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About Pallium Canada

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About Pallium Canada

About Us

Pallium Canada is a national, pan-Canadian not-for-profit organization that aims to improve Palliative Care across Canada through community-building and education of health professionals and carers. It was established in 2001 and since then hundreds of courses have been delivered and thousands of health professionals across different disciplines and professions have been trained.

Our Vision

Every Canadian who requires palliative care will receive it early, effectively and compassionately.

Our Mission

To educate health care professionals and carers about palliative care and to accelerate the integration of palliative care in Canadian communities and healthcare systems.

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Defining Palliative Care

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A brief history of palliative care

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A brief history of palliative care

The origins of palliative care began in the hospice movement. "Hospices" were originally places of rest and care for travelers dating back many centuries. In the 19th century religious orders established hospices in London and Ireland for dying people, often the homeless. It was while working in two such hospices in the 1950's that the founder of modern-day hospice and palliative care, Dame Cicely Saunders, decided to improve the care of terminally ill patients. She had initially trained as a nurse and then as a social worker. She went on to train as a physician to enhance her ability to provide care for these patients. In 1967 she opened St. Christopher's Hospice in London, a hospital (hospice) specifically dedicated to caring for the terminally ill. She also championed and pioneered research and education in the field. She always acknowledged the role that patients and other pioneers across the world had in promoting hospice and palliative care.

Cicely Saunders
Cicely Saunders, Founder of modern day hospice palliative care
Balfor Mount
Dr. Balfour Mount, Founder of palliative care in Canada

In the early 1970's , Dr. Balfour Mount, a Canadian, Montreal-based surgeon and urologist, visited St. Christopher's Hospice and brought the concept to Canada. He coined the term "palliative care" because the term "hospice" had negative connotations in French. In 1973 he opened a palliative care unit in the Royal Victoria Hospital in Montreal. At the same time a similar unit opened in St. Boniface Hospital in Winnipeg. Dr. Mount, like Dame Saunders and other pioneers in the field, has championed the importance of integrating palliative care throughout the healthcare system.

Royal Victoria
Royal Victoria Hospital, Montreal
Saint Boniface Hospice
Saint Boniface Hospital, Winnipeg

Today Palliative Care is practiced in many different settings and different services, not only in hospices. This includes palliative care units and palliative care specialist teams in the community and hospitals. It recognizes that the responsibility of providing palliative care falls both on specialist palliative care teams as well as all other health professionals , including providers of primary care (such as family physicians and primary care nurses) and professionals working in a number of specialty fields, including internal medicine, cardiology, pulmonology, neurology, nephrology, medical and radiation oncology, geriatrics and care of the elderly, critical care, and emergency care (to mention a few). It recognizes the important role of volunteers, a role that goes back centuries.

In an effort to allay confusion between the terms (and concepts) "hospice" and "palliative care", the term "Hospice Palliative Care" came to be used in the early 2000's in Canada by the Canadian Palliative Care Association (which is now called the Canadian Hospice Palliative Care Association or CHPCA) . Palliative care is therefore practiced in hospices as well as in many other settings where patients with life-threatening and life-limiting illnesses and their families are cared for (home, community, hospitals, palliative care units, retirement homes, long term care or continuing care facilities, etc.).

The term "hospice" has come to mean different things in different countries. In Canada, as in the United Kingdom, it largely refers to a residential facility (often free standing but sometimes within another facility such as a long term care facility) that provides end-of-life care (last days and weeks of life). Hospice programs often also provide volunteer-based day-hospice programs and home visiting programs. Palliative Care Units generally care for patients with complex needs across the illness trajectory (not only at the end of life) and are generally housed in hospitals or complex continuing care facilities. In the United States, "hospice" generally refers to home-based care in the last months of life. There are however also residential hospices for end of life care.

What is "Palliative Care"

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World Health Organization (WHO) Definition

Definition: "An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

It states that palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Unfortunately, many people still think of palliative care as being applicable only for the last days or weeks of life. This is incorrect and leads to needless prolonged suffering, inappropriate care and treatment choices and lack of preparation. The WHO's definition -"associated with life-threatening illnesses" - highlights the need to consider palliative care earlier in the illness.

More generally, however, the term "palliative" may refer to any care that alleviates symptoms, whether or not there is hope of a cure or control of the disease. Therefore, "palliative" treatments may be used to alleviate the side effects of treatments intended to cure of control the disease (e.g. nausea associated with chemotherapy or radiotherapy).

Canadian Hospice Palliative Care Association (CHPCA)

Definition: "...Hospice palliative care is appropriate for any patient and/or family living with, or at risk of developing, a life-threatening illness due to any diagnosis, with any prognosis, regardless of age, and at any time they have unmet expectations and/or needs, and are prepared to accept care."

"...Hospice palliative care may complement and enhance disease-modifying therapy or it may become the total focus of care."

The American Society of Clinical Oncology (ASCO)

Definition: "...The integration into cancer care of therapies to address the multiple issues that cause suffering for patients and their families and have an impact on the quality of their lives. Palliative cancer care aims to give patients and their families the capacity to realize their full potential, when their cancer is curable as well as when the end of life is near."

The European Society of Medical Oncology (ESMO)

Definition: "...care that aims to optimize the comfort, function, and social support of patients and their family when cure is not possible"

ESMO prefers to use the term "supportive care" for patients with curable or potentially curable diseases.

The National Institute for Clinical Excellence (NICE)

Definition: "...the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments".

Palliative Care Australia

Definition: "...care provided for people of all ages who have a life limiting illness, with little or no prospect of cure, and for whom the primary treatment goal is quality of life".

Key Concepts in the Definition of "Palliative Care"

Palliative Care is:

  • Applicable across the illness trajectory, not only for the last days, weeks or even months of life.
  • Applicable for all disease groups and conditions. This includes, amongst others:
    • Cancer
    • Advanced lung, heart, neurological, renal, hepatic and metabolic diseases
    • Dementia
    • Frailty
  • For persons of all ages
    • neonates, pediatrics, adults and the elderly.
  • Provided by health professionals from different disciplines and specialty areas, as well as by volunteers
  • Best provided through interprofessional collaboration
  • Provided in many different settings (home, hospital, palliative care units, hospices, etc.)

"Early" Vs. "Late" Palliative Care

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"Early" Vs. "Late" Model of Palliative Care

Early Model of Palliative Care

New PC Model

Versus

Late Model of Palliative Care - Don't use this

Old PC Model

Late Model of Palliative Care

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Late Model of Palliative Care

Old PC Model
Diagram modified from CHPCA model

Cancer Case

Mrs. K, a 55 year-old lady, is diagnosed with lung cancer. At the time of diagnosis the cancer is found to have spread locally; there are no distant metastases. Surgery is not an option. Cure is unlikely. She is experiencing pain and anxiety. She undergoes radiotherapy and chemotherapy with the goal of controlling the disease. She believes the treatment was for cure. The treatment leaves her with fatigue, nausea and a depressed mood. No-one addresses these problems.

A few months later her pain worsens and she starts experiencing more shortness of breath. Further tests show the cancer has progressed and there are metastases in the chest and bones. She is devastated. Mrs. K agrees to 2nd line chemotherapy offered by her oncology team. She experiences side effects. She also notices that she is losing a lot of weight. When she complains of this she is referred to a nutritionist. The oncology team tells Mrs. K that when she feels stronger they could consider other chemotherapy. Mrs. K goes home and tries to eat as much as she can to gain weight so that she can receive other chemotherapy treatment. This makes her more nauseous.

She starts experiencing more pain, shortness of breath, weight loss and anxiety and her functional status starts to decline. She is spending more time sitting and resting. She finds it difficult to go to the cancer centre. The oncology team informs her that there is nothing more they can do and refer her for palliative home care. She and her family are very distressed by this. They say that "they did not see this coming." They become even more distressed when the home care team asks her about Advance Care Planning and recommend a Do-Not-Resuscitate status (DNR). These had never been discussed with her previously and she feels like everyone is giving up on her.

Her family physician informs the family that she does not do home visits. They have to find another physician. Unfortunately she develops severe pain and confusion and is taken to the Emergency Department. She is admitted to hospital where the palliative care team are consulted and treatments are started to control her pain and confusion. She dies several days later in hospital in a three-bed ward. The family are upset that they never really got to say goodbye to her and that she spent her last days in hospital.

Non-Cancer Case

Mr. G is a 69 year old man with advanced congestive heart failure (CHF) (ejection fraction of 18%) who has been brought to the emergency department with severe shortness of breath (NYHA Class IV), episodes of syncope and severe swelling of his legs. He has an implantable cardioverter defibrillator (ICD) and this has fired twice in the last 24 hours. Over the last months he has experienced increasing shortness of breath, edema of the lower legs and weight loss, despite adjustments to his medications. Both he and his family are very distressed.

His CHF was diagnosed about 5 years ago and is related to long-term hypertension. He has visited his cardiologist regularly and has been on medications for several years, including ACE inhibitors, b-blockers and diuretics. He has been hospitalized twice in the last six months because of his heart condition. An implantable cardioverter defibrillator device (ICD) was inserted during the last admission because of cardiac arrhythmias. His and his family's understanding is that this device will keep him alive for many more years.

The on-call cardiologist (who is not his regular cardiologist) is called to see him and the cardiologists asks him and his wife what his goals of care are and whether anyone has spoken to him about advance care planning. The doctor says that it would be important to consider starting palliative care and focus on quality of life at this time, particularly given his failing kidneys and very poor heart function.

Mr. G and his wife are very distressed. He asks the cardiologist "Am I dying?" The cardiologist says "I don't want to lie to you but there is a high risk that it could happen. We could consider admitting you to ICU but if things get worse you will likely need to be put onto life support machines and given the poor condition of your heart, this may not provide you good quality of life."

Before he can decide about his goals of care and DNR status, he loses consciousness and the ICD shocks him twice; this is distressing to his wife and she does not know what to do. His children, who have arrived in the ED, are also not sure what to do. He gets taken to the ICU where he dies several days later on life support machines; during the last days the ICD shocked him several times until the ICU team convinced the family to have it switched off.

Why It's Wrong

Both Mrs. K and Mr. G experienced a disease that progressed over time. Most of us, like these two patients, will experience an illness trajectory with gradual progression and functional decline (sometimes over weeks or months and sometimes over years) before our deaths. Only 10% of deaths occur suddenly and unexpectedly (e.g. massive stroke, myocardial infarction or accident).

Despite clear signs of disease progression and functional decline, the treatment focus for both patients continued to be cure or control; or at least the patients and families were left with this impression. There were no discussions earlier about prognosis or advance care planning. Realistic goals of care were not discussed until the very end, taking the patients and their families by surprise and thereby increasing their distress and not allowing them any opportunity to prepare for end of life.

There was no attention to symptoms, psychological and social, and spiritual well-being and quality of life, until the terminal phase. They both experienced needless symptoms and suffering for many months before palliative care was finally initiated days before their deaths.

Both died in acute care settings. While acute care settings are appropriate for some persons (particularly when disease progression is unexpected and rapid, resulting in complex complications that require hospitalization for treatment), in many cases such settings can be avoided if advance care planning is done earlier, goals of care are discussed and there is better planning ahead in the context of clear signs of disease progression.

Mr. G experienced painful and uncomfortable ICD shocks even while dying. These could have been avoided if there had been discussions about prognosis and quality of life and quality of dying earlier. Mrs. K ended up being admitted to the Emergency Department and hospital to spend her last days of life.

All of this could have been avoided with earlier introduction of a palliative care approach. Click here to learn why Early is better.

Early Model of Palliative Care

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Early Model of Palliative Care

New PC Model
Diagram modified from CHPCA model

Examples:

  • Cancer: chemotherapy, radiotherapy, surgery
  • CHF: Heart failure treatments

Supportive & Palliative Care begins early in the illness trajectory, alongside treatments to control the disease.

  • Symptom management
  • Address psychosocial & spiritual needs
  • Goals of care discussions
  • Do not wait for the last days or weeks to initiate a Palliative Care Approach. Integrate it earlier in the illness trajectory to avoid sudden transitions of care at end of life. Earlier Palliative Care improves quality of life, reduces psychological distress and allows patients to make better care decisions.

Examples: Treat hypercalcemia, infections, delirium, fractures, GI obstruction, heart failure, etc.

When the illness progresses and the patient enters the terminal phase (end of life), the focus of care turns more towards comfort measures

Bereavement care is often forgotten. This is a key component of palliative and end-of-life care. In fact, it often begins even before the death when the patient and family experience anticipatory grief. It also includes identifying family members at risk for complicated grief reactions after the death.

Cancer Case

Mrs. K, a 55 year-old lady, is diagnosed with lung cancer. At the time of diagnosis the cancer is found to have spread locally; there are no distant metastases. Surgery is not an option. She understands that cure is unlikely but that control of her disease for as long as possible is a realistic goal. She undergoes radiotherapy and chemotherapy with the goal of controlling the disease. At the same time her symptoms are assessed by her oncology team and she is found to be experiencing moderate levels of pain and anxiety. A weak opioid is initiated by her oncologist to control her pain and the combination of this and the radiotherapy successfully controls the pain. Her anxiety is explored and supportive counselling is provided by her oncology nurse. She is encouraged to continue seeing her family physician.

A few months later her pain worsens and she starts experiencing more shortness of breath. Further tests show the cancer has progressed and there are metastases in the chest and bones. She is devastated and experiencing significant sadness. Her oncologist refers her to the psychosocial program at the Cancer Centre. She also discusses the various treatment options with Mrs. K. Although 2nd line chemotherapy may be an option, it does not appear to offer significant benefits; neither significant life prolongation nor significant symptom control. They decide that the most appropriate goal of care would be to optimize quality of life. Given that her functional status is still reasonable at this time, this would include treating any complications of the disease that may arise, such as infections or hypercalcemia. Her oncologist also encourages to review her advance care plans and to identify a power of attorney. They also discuss code status and she requests a DNR status. She is also connected with palliative home care and starts seeing her family physician in his clinic.

A few weeks later she presents to her family physician with increased shortness of breath, a productive cough, fever and somnolence. Tests (blood work and a chest x-ray) show that she has a pneumonia and hypercalcemia. Antibiotic treatment is started and she is referred to the day hospital where she is treated with a bisphosphonate infusion to reduce the calcium level. A few days later she is feeling much better and visits her son in another province.

Over the ensuing weeks she spends lots of quality time with her family. Adjustments are made to her pain medications to control her symptoms (pain and dyspnea). Medications that are no longer useful given the goals of care, are discontinued. These include her cholesterol lowering medications and calcium and vitamin D.

Several weeks later she experiences a pain crisis. Initial attempts at treating this at home (including a visit by the specialist palliative care consultation team) are unsuccessful. She is admitted to a local acute palliative care unit where the pain is treated. She is discharged again home 10 days later, where she stays for another 45 days until her death, surrounded by her family. Her family physician provides bereavement care to her husband because he is also the husband's physician. The husband is also connected to a community grief and bereavement program.

Non-Cancer Case

Mr. G is a 69 year old man with advanced congestive heart failure (CHF) (ejection fraction of 18%). He is being cared for at home and has been connected with palliative home care for several months. His family physician does occasional home visits. His family physician and home care nurses have access to a specialist palliative care consultation team for advice when needed. Dyspnea has been well controlled with a small dose of morphine. This was already started several months ago when he first started experiencing shortness of breath with mild exertion. He continues to be on his heart medications (diuretics, ACE inhibitor and B-blocker) and these, particularly the diuretics, have recently been adjusted to help control his symptoms (dyspnea and pedal edema). He has a Do Not Resuscitate (DNR) order in place and his wish is to die at home or a hospice, depending on his needs and the impact on his family (unless his symptom become very severe in which case he wishes to be admitted to a palliative care unit for symptom control at the end of life).

His CHF was diagnosed about 5 years ago. Over the years he has been cared for by both his cardiologist and his family physician (his cardiologist always encouraged him to stay connected to his family physician). With every visit to them, they examined him and adjusted his heart medications to optimize control of his CHF. Periodically they did investigations to guide treatment and understand the extent of the disease. They also regularly assessed his symptoms and periodically explored for psychosocial and spiritual needs. They occasionally touched base on the goals of care; particularly when there were signs of disease progression despite the treatments. They discussed prognosis and realistic goals of care ("if cure is not possible, what is possible?"). Within that framework the focus was on controlling his disease as best as possible while at the same time ensuring optimal quality of life and undertaking advance care planning.

Several months previously, when he was experiencing palpitations and episodes of syncope as a result of dysrhythmias, it was deemed appropriate to insert an implantable cardioverter defibrillator (ICD). Over the months this had fired once. However, as his functional status declined and he lost a lot of weight and started experiencing shortness of breath at rest (NYHA Class IV), he and his cardiologist and family discussed goals of care and appropriate end-of-life care. They decided to switch off the ICD, recognizing that care would continue but at least he would not experience painful shocks and futile prolongation of life without good quality.

Mr. G dies comfortably, surrounded by his family and with the support of home care services and a family physician.

Why It's Right

Both Mrs. K and Mr. G experienced a disease that progressed over time. Most of us, like these two patients, will experience an illness trajectory with gradual progression and functional decline (sometimes over weeks or months and sometimes over years) before our deaths. Only 10% of deaths occur suddenly and unexpectedly (e.g. massive stroke, myocardial infarction or accident).

Initially (at the beginning of the illness trajectories), the main focus was on controlling the diseases (in some cases even curing). However, symptom control and attention to psychological, social and social well-being as well as quality of life were also started. These two goals of care- treatments to modify and control the disease and palliation- are not mutually exclusive and occurred at the same time. Advance care planning was also initiated early and the patients and families were connected to palliative care resources.

Later, as the disease progressed and treatments to control the disease became less effective, the palliative care approach became more prominent. It was a gradual, seamless transition in both cases.

Introducing palliative care early did not increase psychological distress (depression or anxiety) but resulted in better quality of life and better care decisions as well as healthcare resource utilization. A study in 2010 by Temel and colleagues, published in the New England Journal of Medicine, showed that introducing palliative care early in the illness of patients who had incurable lung cancer at the time of diagnosis resulted in significantly less depression, anxiety and symptoms and improved quality of life when compared to patients who were referred to a palliative care service only at the end of life (last days or weeks)(1). Moreover, patients who received early palliative care (at the same time as radiotherapy and chemotherapy) lived about 3 months longer. More recent studies involving patients with other types of cancer and non-cancer diagnoses have demonstrated similar results, particularly with respect to improved quality of life (2,3).

The model of early integration of a palliative care approach (whether it be provided by the attending physician or a specialist palliative care service) should replace the current "late" model. The "early" model avoids the often abrupt and traumatic transitions of care from curative or control to "palliative" or "hospice" at the EOL. In the earlier phases of a disease, when the main focus of care may be on controlling the disease, palliation can optimize symptom control, quality of life and goal of care discussions. Palliation becomes the main focus as the disease advances and EOL approaches (See the Pallium Doodle "Better early than late". This does not mean that all patients should be referred to specialist palliative care teams, but rather that a palliative care approach should be activated early. This approach can be provided by the physician and team caring for the patient. See "Who provides palliative care")

1. Temel JS, et al. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. N Engl J Med 2010;363:733-742.
2. Zimmerman C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomized controlled trial. Lancet 2014;383(9930):1721-1730
3. Sidebottom AC, Jorgenson A, Richards Het al. Inpatient Palliative Care for Patients with Acute Heart Failure: Outcomes from a Randomized Trial. J Palliat Med. 2015; 18(2): 134-142

Better Early Than Late

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Better Early Than Late

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Who Provides Palliative Care

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Who Provides Palliative Care

Palliative care is not the responsibility only of specialist palliative care clinicians and teams. All health professionals who provide any form of care to patients with life threatening and life limiting illnesses should be able to provide basic, primary- or generalist-level palliative care, also known as the "Palliative Care Approach".

Who Provides Palliative Care 2

Specialist-Level Palliative Care

A smaller number of patients require specialist-level palliative care services. Palliative care specialists also provide consultation and education support to generalists providing a Palliative Care Approach.

Primary-Level Palliative Care

Most palliative and end-of-life (EOL) care can be provided at this primary - or generalist-level. It requires basic palliative & EOL care competencies and the support of palliative care specialist teams.

Who Provides Palliative Care

Patient A: is a patient who has experienced basic palliative care needs throughout his/her illness. These needs were met by a non-palliative care health care professional, such as a family physician, oncologist or internist with good basic skills to provide a palliative care approach. He/she required primary-level palliative care throughout his/her illness. He/she did not require specialist palliative care services.

Patient B: required primary-level palliative care through most of his/her illness but experienced a complex crisis that required the temporary intervention of a specialist palliative care service until his/her situation resolved. Most patients requiring palliative care follow the trajectories of Patients A and B.

Patient C: started off with basic palliative care needs early in the illness trajectory and these were addressed by his/her care team; it did not require a palliative care specialist team. However, at some point in the illness, his/her needs became complex and remained complex until his/her death. This required that a specialist palliative care team take over the responsibility of providing palliative care (at a specialist level).

Patient D: had complex palliative care needs throughout his/her illness, requiring a specialist palliative care team to provide palliative care. These constitute a small number of patients requiring palliative care.

Patient and Family Needs Care Level Required
Complex palliative and end-of-life (EOL) care needs Specialist-level Palliative Care Also responsible for leading education, research, quality improvement and health services planning in the field
Needs not complex or very difficult. Palliative Care Approach Generalist-level Provided by health professionals in family medicine, internal medicine, cardiology, ICU, ED, pulmonology, nephrology, geriatrics, neurology, etc.

Myths

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Palliative Myths Episode 1

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Myths

Myth Reality
Palliative care is only for the last days and weeks of life Fact: Palliative care should start early, when a disease is found to be serious and life threatening.

Palliative care should start as soon as a disease is deemed to be progressive and incurable. When done earlier, it can be done alongside treatments to control the disease. The palliative approach to care results in better quality of life, reduced depression and anxiety, and in some cases a longer life expectancy.
Starting palliative care means I'm dying Fact: Starting palliative care early means many more months of better quality of life.

Many people would benefit from palliative care long before their disease is in the terminal phase. Palliative care focuses on improving quality of life and engaging in important discussions - no matter how long one has to live.
Palliative care starts when there is no further active treatment available Fact: Palliative care is active care.

Palliative care is very active care. It requires:
  • Treating symptoms using different medications and approaches
  • Making the right choices between different treatments and care goals
  • Providing psychological and social support
  • Providing spiritual care
  • There is always a lot of active care to be done!
Starting palliative care means giving up Fact: Starting a palliative care approach means that care continues.

Starting palliative care means changing the goals of care. It doesn't mean "giving up" as there is always ongoing and active care to be done!
Palliative care means getting doped up with morphine until the end Fact: The goal of palliative care requires effective and judicious use of medications.

Morphine and other opioids are safe and effective medications when used appropriately to treat pain. The goal is to control pain and have a person clear of mind. Becoming increasingly sleepy and fatigued is a normal part of dying. Too often morphine is blamed for this when it's actually innocent.

Palliative Myths Episode 2

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Myths

Myth Reality
Palliative care is only for the elderly. Fact: Palliative care is applicable for ALL ages! Life threatening and life limiting illnesses occur across all age groups.

Although more common in older people, younger people also develop progressive incurable illnesses.
Palliative care is just for patients with cancer. Fact: Palliative care is for all life limiting illnesses, cancer OR non-cancer.

Palliative care is applicable for many different diseases, not only cancer. This includes advanced heart, lung, kidney and neurological diseases such as dementia and ALS.
Palliative care is done only by palliative care specialist teams. Fact: Palliative care is the responsibility of all health professionals who, in the course of their work, provide care to patients with life threatening and life limiting illnesses.

All health professionals who care for someone with a life threatening or life limiting illness should know the essentials of good palliative care. Family Doctors, Nurses, Oncologists, Cardiologists, Pharmacists, Social Workers, Dieticians, Physiotherapists, Occupational Therapists, Ethicists, Spiritual Care Providers, should all have training. We cannot rely only on a small number of palliative care specialists to provide palliative care.
Everyone has access to good palliative care. Fact: Work still needs to be done by health services across the country to fully integrate palliative care and ensure access to palliative care.

Only 16 to 30% of Canadians have access to palliative care and most of them only receive palliative services within the last days and weeks of life.
People are immortal. Fact: No one is immortal.Everyone dies someday, and today, sudden death is much less common than it once was.

The World Health Organization states that in Canada chronic diseases are projected to account for 89% of all deaths.

The Right Language

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Lexicon of Common Terms

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Lexicon of Common Terms

Advance Care Planning

ACP refers to the process where capable adults reflect and discuss their beliefs, values, and wishes about the health care they wish to receive at the end of life. It also includes identifying a power of attorney (for health care and for finances). People are encouraged to discuss these wishes and preferences with their substitute decision maker or power of attorney (POA) as well as their health care providers and to document them. It is a process of reflection on personal values and wishes and letting others know preferences regarding future health and personal care in the event the person becomes incapable of consenting to or refusing treatment or other care. Wishes in the form of advance directives or otherwise do not constitute consent for treatment. Consent for treatment, including the withholding or withdrawal of treatment, must be obtained at the time the treatment is proposed from the patient when capable, or the substitute decision-maker or POA when the patient lacks capacity.

End-of-life (EOL)

Refers to the last days or weeks of life. It is synonymous with "terminal". The European Society Of Medical Oncology (ESMO), for example, defines EOL as "when death is imminent"

Hospice

The term "hospice" has come to mean different things in different countries. Its roots lie in a care approach for patients at the end-of-life (last days and weeks). See "A Brief History of Palliative Care". In Canada, as in the United Kingdom, it largely refers to a residential facility (often free standing but sometimes within another facility such as a long term care facility) that provides end-of-life care (last days and weeks of life). Hospice programs often also provide volunteer-based day-hospice programs, bereavement care and home visiting programs. "Hospice" is therefore a subset of "palliative care" and palliative care is practiced in hospices. Palliative Care Units on the other hand generally refer to units for patients with complex needs across the illness trajectory (not only at the end of life). They are generally housed in hospitals or complex continuing care facilities. In the United States, "hospice" generally refers to home-based care in the last months of life. There are however also residential hospices for end of life care.

Hospice Palliative Care

In an effort to allay confusion between the terms (and concepts) "hospice" and "palliative care", the term "Hospice Palliative Care" came to be used in the early 2000's in Canada by the Canadian Palliative Care Association (now called the Canadian Hospice Palliative Care Association or CHPCA). Instead of being two distinct and separate approaches to care and settings of care, the phrase is used to highlight that they are part of the same approach and represent different points on the same spectrum. Palliative care is therefore practiced in hospices and the "hospice approach" and "palliative care approach" are one and the same, although the hospice approach generally, in residential hospices, focusses on end of life care (last days and weeks) while palliative care is across the illness trajectory, from early in the illness to the end of life. Both include bereavement care. Palliative care is provided in the many different settings that patients with life-threatening and life-limiting illnesses and their families are to be found, including patients' homes and long term care facilities and retirement homes, the community, hospitals, palliative care units and hospices.

Palliative Care

The World Health Organization (WHO) defines "palliative care" as:

"An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

It states that palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible until death;
  • offers a support system to help the family cope during the patients illness and in their own bereavement;
  • uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
  • will enhance quality of life, and may also positively influence the course of illness;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
http://www.who.int/cancer/palliative/en/

Palliative and End-of-Life (EOL) Care

This phrase is sometimes used to highlight palliative care beginning early in the illness trajectory and not only at the end-of-life (last days or weeks). Using the two alongside one another (i.e. "palliative" and "end-of-life") underscores this. However, some may consider this redundant because end-of-life care is included in "palliative care".

Palliative Care Approach

Refers to primary - or generalist-level palliative care. The term originated in Australia to differentiate primary-level (or generalist-level) palliative from specialist-level palliative care. Palliative Care Australia defines it as "an approach linked to palliative care that is used by primary care services and practitioners to improve the quality of life for individuals with a life limiting illness, their caregiver/s and family". A Family physicians, primary care nurses and other primary care health professionals as well as health professionals across a number of specialty areas (such as internal medicine, medical oncology, radiation oncology, cardiology, pulmonology, emergency medicine, critical care, geriatrics and care of the elderly, nephrology, neurology and pediatrics to name a few) should posses good basic competencies to provide a palliative care approach (i.e. high quality primary-level palliative care).

The terms "generalist-level palliative care" and "primary-level palliative care" are synonymous to the "palliative care approach".

Palliative Care Unit (PCU)

Palliative Care Units refer to units that provide palliative care for patients and families with complex needs, across the illness trajectory (not only at the end of life). They are usually hosted in acute care hospitals and facilities, but in some provinces (e.g. Ontario) may also be found in complex continuing care facilities. The cost of care in these units, given the complexity of patient needs, is higher than in hospices but often less than the costs of care in acute medical or surgical units. PCUs vary in size from a handful of beds to over 30 beds in some provinces.

Phases of Palliative Care

Refers to the various timelines across the illness trajectory. It includes the ambulatory phase (when a patient's performance status is still good), the transitional phase (increasing performance status decline), and the terminal phase (or EOL phase). These are followed by the bereavement phase for the family.

Primary-Level Palliative Care

Health services are provided at different levels, including primary, secondary and tertiary. "Primary-level palliative care" refers to the palliative care that is required by patients and families whose needs are not complex (i.e. have basic palliative care needs). Specialist-level palliative care clinicians and services are not required to meet these needs, provided the providers of "primary-level" palliative care have the basic set of competencies and skills to provide the care. With some good basic palliative care training, primary-level palliative can be delivered by a large number of health professionals and teams across different specialty areas and settings. These include, amongst others, family physicians and primary care nurses and health professionals (including physicians, nurses and allied health professionals) in medical oncology, radiation oncology, internal medicine, cardiology, pulmonology, nephrology, neurology, emergency medicine, intensive care, geriatrics and care of the elderly and pediatrics.

The terms "palliative care approach" and "generalist-level palliative care" are synonymous to "primary-level palliative care".

Specialist Palliative Care

Refers to palliative care provided by clinicians and teams with advanced competencies, experience and training in palliative care. Specialist-level palliative care clinicians and teams are found across a number of settings, including hospitals, community, hospices and palliative care units (amongst others). They usually provide clinical care to patients and families with difficult and complex needs, and lead education and research activities in the field of palliative care. Most of palliative care could be delivered at a generalist or primary-level (Palliative Care Approach), with specialist-level services involved in a proportionately smaller number of cases.

Supportive Care

Supportive care is an 'umbrella' term for care and services that may be required to support patients throughout the illness trajectory; patients with potentially curative illness, cancer survivors, patients whose disease is controlled and those whose disease is progressing. It includes symptom management, physiotherapy and occupational therapy and other rehabilitation, nutritional care, social care, psychological support and spiritual care, amongst others. It recognizes that people have needs for supportive care from the time that the possibility of cancer is first raised. "Palliative care" makes up a large portion of spectrum that "Supportive care" represents. Supportive care, including palliative care, requires an inter-professional approach with close collaboration between all professionals involved in the care of a patient.

While some cancer organizations include the management of cancer treatment - related complications such as febrile neutropenia and chemotherapy-induced nausea as a component of "supportive care", others view these treatments as components of general cancer care and not separate "supportive care' interventions. National Institute for Care of the Elderly (NICE) stresses that "rather than being a distinct specialty, supportive care is the responsibility of all health care professionals involved with the care of patients and families at various points in the illness trajectory".

The concept of supportive and palliative care is also applicable to non-cancer diagnoses.

Terminal

Refers to the last days or weeks of life. It is synonymous with end-of-life (EOL).

Terms and Phrases to Avoid

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Terms and Phrases to Avoid

"The patient is not yet palliative."

This phrase is contrary to the definition of palliative care because it implies that palliative care is relevant only at the end of life (i.e. the last weeks or months). It contradicts the more appropriate model that palliative care begins earlier in the illness trajectory and is appropriate alongside treatments to control the disease (such as chemotherapy, radiotherapy or surgery). This phrase propagates the outdated notion that a patient transitions abruptly from a curative or "treatment" mode to a palliative care mode at the EOL. The transition from a curative or control mode to a palliative-focused mode should, when possible, be more gradual, occurring over months and even years in some circumstances (i.e. progressive chronic illnesses).

"Do you wish active care or palliative care?"

This phrase suggests that palliative care is a passive form of care, one in which clinicians take a "hands-off" approach. On the contrary, palliative care is very active care requiring meticulous screening, history-taking and physical examinations as well as the use of investigations when required and consistent with the goals of care. It requires ongoing monitoring and reviewing of the goals of care and care plans, particularly when the clinical situation changes. It is therefore more appropriate to use language such as "if cure or control of the disease is not possible, let's consider treatments that can get you as comfortable as possible in whatever time you have left" or "While we try and control the disease for as long as possible, we should also ensure that your symptoms are palliated (controlled) and your quality of life is made optimal".

"There is nothing else we can do; you are now palliative."

This language leaves the impression that palliative care has little to provide or benefit the patient. It tends to reduce hope, particularly when the patient's hope is still tied only to disease cure or control. It also propagates the misperception that palliative care is only relevant at the EOL.

It would be more appropriate to say "Although we cannot cure or control the disease, there are still many treatments we could do to ensure that you are comfortable and your quality of life is optimal."

"Do not speak about 'palliative care' yet, otherwise he/she will give up hope and become depressed."

This language implies that activating palliative care, either as a palliative care approach or by a specialist palliative care service, takes away hope and causes increased levels of psychological distress for patients. Experience and empiric evidence from several studies contradicts this misperception. Studies show that earlier activation of palliative care reduces psychological distress on the long term and patients may even live longer than if it were activated only late in the illness. Hope need not be solely linked to cure or survival, but may be reframed and nurtured even in the presence of disease progression.

The Words We Use

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The Words We Use

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Clinical Toolbox

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Illness Trajectories

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Illness Trajectories

Cancer Trajectory

This represents the average curve. A large study by Barbera and Seow et al in Ontario of several thousand cancer patients confirmed this trajectory. However, some cancers are beginning to take on a chronic illness trajectory (see Chronic End-stage heart/lung Illness Trajectory.

Studies show that in advanced lung cancer, for example, life expectancy when a patient has a PPS of 50% is in the order of several weeks to a few months.

For some cancers the terminal phase can be more abrupt, while for others more gradual.

Adapted from Gold Standards Framework Lunney JR, Lynn J, Hogan C. Profiles of older medicare decedents. J Am Geriatr Soc 2002;50:1108-12
Heart and Lung Disease Trajectory

Note that for some patients, e.g. with endstage heart failure, death can be relatively sudden at any time in the illness trajectory.

Adapted from Gold Standards Framework Lunney JR, Lynn J, Hogan C. Profiles of older medicare decedents. J Am Geriatr Soc 2002;50:1108-12
Dementia Trajectory
Adapted from Gold Standards Framework Lunney JR, Lynn J, Hogan C. Profiles of older medicare decedents. J Am Geriatr Soc 2002;50:1108-12

Pain

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Weak opioids and starting doses

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Weak opioids and starting doses

Codeine is a convenient first line weak opioid. If there is a neuropathic pain component, use tramadol instead of codeine. Codeine is not more constipating than other opioids. If pain still not well controlled despite maximum doses, switch to a strong opioid (M or HM). Maximum doses are: Tramadol (400mg per day) and codeine (about 240mg per day). Manage opioid side effects.

Opioid Usual Starting Dose Frail Persons, very elderly and/or patients with advanced heart & lung disease
Start with lower doses
Codeine 15mg q 4hr PO + 15mg PO q1hr PRN 7.5 mg q 6hr PO + 7.5mg PO q2hr PRN
Tramadol 37.5mg PO TID PO + 37.5mg PO QID PRN 37.5mg PO BID PO + 37.5mg PO TID PRN

NB: Note that these are guidelines only. Doses need to be individualized to individual circumstances. The doses in some patients may need to be even lower. This may include patients with renal impairment.

Clinical Frailty Scale

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Clinical Frailty Scale

Clinical Frailty Scale
© 2007-2009. Version 1.2. All rights reserved. Geriatric Medicine Research, Dalhousie University, Halifax, Canada. Permission granted to copy for research and educational purposes only.

RASS-PAL

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RASS-PAL

Score Term Description  
+4 Combative Overtly combative, violent, immediate danger to staff (e.g. throwing items); +/- attempting to get out of bed or chair  
+3 Very agitated Pulls or removes lines (e.g. IV/SQ/Oxygen tubing) or catheter(s); aggressive, +/- attempting to get out of bed or chair  
+2 Agitated Frequent non-purposeful movement, +/- attempting to get out of bed or chair  
+1 Restless Occasional non-purposeful movement, but movements not aggressive or vigorous  
0 Alert and calm  
-1 Drowsy Not fully alert, but has sustained awakening (eye-opening/eye contact) to voice (10 seconds or longer) Verbal Stimulation
-2 Light sedation Briefly awakens with eye contact to voice (less than 10 seconds) Verbal Stimulation
-3 Moderate sedation Any movement (eye or body) or eye opening to voice (but no eye contact) Verbal Stimulation
-4 Deep sedation No response to voice , but any movement (eye or body) or eye opening to stimulation by light touch Gentle Physical Stimulation
-5 Not rousable No response to voice or stimulation by light touch Gentle Physical Stimulation

Click here to learn more about the RASS-PAL

Bush SH, Yarmo MN, Grassau PA, Zhang T, Zinkie SJ, Pereira J. The validation and feasibility of using a palliative care modified Richmond Agitation-Sedation Scale (RASS-PAL) instrument in a palliative care inpatient unit: A pilot study. 7th World Research Congress of the European Association for Palliative Care (EAPC), June 7-9, 2012: Trondheim, Norway. Palliat Med 2012; 26(4):467 (P36)

Who Ladder

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WHO Ladder for Pain Control

WHO Ladder
Adapted from: WHO Analgesic Ladder, 1986

Principles of Pain Care

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Principles of Pain Care

  • By the Ladder
  • By the mouth (the oral route is effective and preferred. Use a parenteral route only if a pt is unable to swallow or in a pain crisis)
  • By the clock (regular dosing - e.g. q4hrs- because most patients have ongoing or frequent pain; avoid only PRN dosing)
  • With a Breakthrough (PRN doses)
  • Titrate (contact the pt every 2 to 3 days during the titration phase to facilitate titration
  • For the individual

Strong opioids and starting doses

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Strong opioids and starting doses

Morphine (M) is a good opioid to start with if a strong opioid is needed. There is no strong evidence that hydromorphone (HM) is superior. Consider HM only if patient is allergic to M.

Opioid Usual Starting Dose Frail Persons, very elderly and/or patients with advanced heart & lung disease
Start with lower doses
Morphine 5mg q 4hr PO + 5mg PO q1hr PRN 1mg or 2.5mg q 6hr PO + 1mg PO q2hrs PRN
Hydromorphine 1mg q 4hr PO + 1mg PO q1hr PRN 0.5mg q 6hr PO + 0.5mg PO q2hr PRN

NB: Note that these are guidelines only. Doses need to be individualized to individual circumstances. The doses in some patients may need to be even lower. This may include patients with renal impairment. Avoid morphine in patients with severe renal impairment.

Opioid Formulations

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Opioid Formulations

In most cases, start with a short-acting opioid to facilitate titration. In rare cases, where compliance is an issue, consider a long-acting formulation plus short acting for PRNs. Do not start an opioid-naïve patient on a fentanyl patch (difficult to titrate & potency high relative to morphine). Switch to a long-acting formulation once titration completed (i.e. pain well controlled & no side effects).

Preventing and Managing Opioids Side Effects

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Preventing and Managing Opioids Side Effects

Common side effects:

Constipation:

  • requires ongoing laxatives (senna or lactulose or PEG (Polyethylene glycol))
  • Do not require more than 1 type of laxative.
  • Docusate no longer recommended (ineffective as per randomized controlled trials)

Nausea:

  • Usually resolves after 3-5 days
  • Prescribe metoclopramide (10mg QID or PRN) or domperidone (10mg TID or PRN) for the first 3 to 5 days after initiating treatment.

Somnolence:

  • Usually resolves after 3-5 days
  • Do not drive until pain controlled; no somnolence and no toxicity.

Less common side effects:

  • Opioid neurotoxicity
  • Sweating, dry mouth, pruritus
  • Respiratory depression (rare with appropriate dosing)

Opioid Equianalegesic Table

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Opioid equianalgesic dose table

Drug Approximate Equivalent Dose
  Oral Subcut (or IV)
Codeine 100mg -
Tramadol 50mg -
Morphine 10mg 5mg (3mg)
Hydromorphone 2mg 1mg (0.5mg)
Oxycodone 5-7.5mg -
Fentanyl - 50mcg
Methadone About 1mg; but various according to the previous opioid dose -

*These are approximate equivalences and serve only as guides When switching, reduce new opioid dose by 20%-30% in all cases.

Other Useful Opioid Information

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Other Useful Opioid Information

Opioid starting doses

Opioid Usual Starting Dose Frail Persons, very elderly and/or patients with advanced heart & lung disease
Start with lower doses
Codeine 15mg q 4hr PO + 15mg PO q1hr PRN 7.5 mg q 6hr PO + 7.5mg PO q2hr PRN
Tramadol 37.5mg PO TID PO + 37.5mg PO QID PRN 37.5mg PO BID PO + 37.5mg PO TID PRN
Morphine 5mg q 4hr PO + 5mg PO q1hr PRN 1mg or 2.5mg q 6hr PO + 1mg PO q2hrs PRN
Hydromorphine 1mg q 4hr PO + 1mg PO q1hr PRN 0.5mg q 6hr PO + 0.5mg PO q2hr PRN

NB: Note that these are guidelines only. Doses need to be individualized to individual circumstances. The doses in patients may need to be even lower. This may include patients with renal impairment. Avoid morphine in patients with severe renal impairment.

Opioid Myths

Myth Fact
Opioids shorten life Opioids, if properly used do not shorten life
Opioids invariably sedate Upon initiation, some patients may experience some somnolence for a few days. This usually resolves. If it does occur, exclude opioid overdosing (a rare phenomenon in this patient population if appropriate practices are followed). If it does not resolve, reassess the patient for other causes. If it is related to the opioid, consider switching to another one.
Addiction is a big problem in this patient population. While it is recognized that in the general population, including patients who develop progressive incurable illnesses, addictions do occur in a small subset of patients, in the context of palliative care, this is not a concern. In most cases, increased doses are required to manage increased pain related to progression of the disease and the development of tolerance to the analgesic effects of opioids. However, it is important that clinicians take the necessary precautions (e.g contracts, single provider prescriptions, etc.) if a clinician suspects a higher risk for addiction or elicit use or diversion.

Opioid addiction versus tolerance versus dependence

Tolerance:
Over time, larger doses are need to control pain. This is not addiction.

Dependence:
Withdrawal symptoms if the opioid is suddenly discontinued or excessively reduced. This is not necessarily addiction (although it may occur in persons with opioid addictions).

Addiction:
Psychological dependence; use for psychological "high" even when it causes harm.

Opioid neurotoxicity versus opioid overdose

Opioid Neurotoxicity Opioid Overdose ("Narcotization")
  • More Common
  • Presentation - one or more of the following:
    • Myoclonus
    • Hallucinations
    • Agitation
    • Somnolence
    • Cognitive Dysfunction
    • Hyperalgesia, alloynia
  • Treatment
    • Reduce opioid dose (if toxicity mild and pain well controlled)
    • Switch opioid (if severe or/and pain poorly controlled)
    • Hydrate (in all cases to help eliminate opioid metabolites; particularly morphine, hydromorphone, oxycodone and codeine.
  • Rare
  • Presentation - usually two or more present:
    • Miosis
    • Respiratory depression
    • Loss of consciousness
  • Treatment
    • Depends on severity
    • If mild to moderate: hold next opioid dose and reduce dose
    • If severe, naloxone

Adjunvant Analgesics

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Adjunvant Analgesics

There are no clear guidelines on when to initiate an adjuvant analgesic.

Mild neuropathic pain: May use an adjuvant only.

Moderate to severe neuropathic pain: Some first titrate the opioid and then add an adjuvant if there is no good response within 5 to 7 days. Others opt to add an adjuvant to the opioid right away. 1st line adjuvants include pregabalin, gabapentin & tricyclic antidepressants.

Bone pain: NSAIDs should be used with caution in frail patients with advanced disease. Their role is limited in severe bone pain (use a corticosteroid for 5 to 7 days instead).

Switching Opioids

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Switching Opioids

Indications for Switching Opioids

  • Opioid neurotoxicity
  • Dose limiting side effects such as nausea
  • Lack of effect despite titrating the dose (opioid may not be ideal for pt's opioid receptor profile)
  • Rapid dose escalation (over days or many days) without a good response (due to tolerance, metabolism, genetic receptor profile); but look for other causes such as disease progression)

Steps When Switching an Opioid

  • Step 1: Calculate the total daily opioid dose (do not include breakthroughs if there was a dose escalation in the context of delirium)
  • Step 2: Convert the opioid to the new opioid dose using the opioid dose table (see below)
  • Step 3: Reduce the dose by another 20% to 30%
  • Step 4: Calculate the dosing schedule & titrate. Monitor pt daily or every 2 or 3 days until switch completed. When switching opioids, switch to short-acting formulations to facilitate titration. Once dose stable, may be switched to a long-acting formulation. Methadone should be initiated only by a palliative care or pain specialist as the switch is complicated. However, once the switch is complete, it is relatively easy to maintain (an important caveat is that the patient may not use more than 4 breakthroughs a day and avoid rapid and large dose titrations)

Opioid Equivalent Dose Table

Drug PO Subcut or IV TD
Morphine 5mg 2.5mg -
Hydromorphone 1mg 0.5mg -
Oxycodone 2.5mg - -
Fentanyl - 25mcg See CPS table
Methadone 0.5mg*
but ratio variable
- -

Note:

  • Hydromorphone is 5 times more potent than morphine (more potent does not mean more effective) and oxycodone is about 2 times more potent than morphine.
  • The parenteral routes (subcut or IV) are about 2 times more potent than the oral routes.
  • Fentanyl is about 100 times more potent than morphine
  • A fentanyl patch of 25 mcg/hr is equivalent to about 90mg to 120mg morphine PO per day. Therefore it is not advisable starting an opioid naïve patient on this patch.

Fentanyl Patch

  • When switching to a fentanyl patch, remember to overlap the previous opioid and the fentanyl patch by about 12 hours. I.e. take a dose of the previous opioid (e.g. morphine PO) and apply the patch at the same time. Take another morphine dose 4 and 8 hours later (if using a short acting form of morphine) and then stop with the regular morphine dose. It takes about 12 hrs for the fentanyl to reach significant blood levels after applying it for the first time. When discontinuing the patch, remove it and only start the new regular opioid 12 hrs later.
  • Patches should be changed only every 3rd day, and doses cannot be increased more rapidly than every 3 days.

Breakthrough Pain (BTP)

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Breakthrough Pain (BTP)

Breakthrough Pain

Breakthrough Pain (BTP)

  • Over 70% of cancer patients experience breakthrough pain
  • Defined as a transient exacerbation of pain on a background of well controlled baseline pain (baseline pain has to be well controlled before it can be called breakthrough pain)
  • BTP can last from a few minutes to over an hour and can occur from only a few times a day to many times a day
  • In some cases it's onset is predictable (e.g. incident pain with movement or weight-bearing), while in other cases it is unpredictable and has no obvious precipitating cause. When predictable, take a PRN dose about 10 minutes before engaging in activity (e.g. bathing or weight-bearing) that elicits the BTP

Usual Management of BTP

  • Use a short-acting opioid formulation, usually the same one as the pt is taking regularly for baseline pain control (e.g. If a slow-release formulation of morphine is being used for baseline control, use a short-acting formulation of morphine on a PRN (as needed) basis for BTP)
  • If the patient is on a fentanyl or buprenorphine patch, then use a short-acting formulation of morphine or hydromorphone
  • The dose of the PRN is calculated as 10% of the total daily baseline dose (e.g. if the patient is on slow-release morphine 30mg PO q12hrs, the PRN dose of short-acting morphine is 6mg PO q 1hr PRN (5mg for convenience))
  • Remember to titrate the PRN dose. Do this by simply asking the pt if the PRN dose has been effective (after at least 3 attempts). If effective, leave it at 10% of the total daily dose. If ineffective increase the PRN dose to 15% of the total daily dose. This may be further increased to 20% of the total daily dose if 15% is ineffective. If, on the other hand, 10% causes excessive somnolence, reduce the dose to 5% of the total daily dose.

New transmucosal ™ fentanyl formulations

  • Useful if the "usual management" is ineffective and/or the BTP is of rapid onset and short duration (the onset of action of short acting morphine is 15 to 20 min, not helpful of the BTP's onset is within a few minutes and it then disappears after 10 to 30 min).
  • Much more expensive than the "usual" treatments.
  • A patient must already be on regular opioid treatment (≥60mg morphine PO/day).
  • Start off by using the smallest available dose (in the case of SL, it is 100mcg). If ineffective after at least 3 attempts, titrate the dose to 200 mcg (Titrate as needed in increments of 100 mcg).
  • No more than 4 doses can be given in a 24 hr period.
  • Each dose must be 4 hours apart (if you need a PRN earlier, use another opioid).
  • Note that different transmucosal formulations are not dose equivalent. If switching from one to another, one has to start titrating again de novo at the lowest dose.

"End-of-dose" Failure

  • About 10% to 15% of patients on controlled-release opioid formulations experience worsening of their pain a few hours before the next dose it due
  • The most common cause for this is an inadequate baseline dose. Therefore first try increasing the baseline dose (e.g. from MS Contin 30mg PO q12hrs to MS Contin 45mg PO q12hrs ). If the problem continues, you are dealing with "end-of-dose" failure, usually because of the individual's metabolism of the opioid. In this case, return to the initial dose and reduce the dosing interval (e.g. in the above example, increase the MS Contin to 30mg PO q 8hrs)

Help

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Help

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Total Pain

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Total Pain

Total Pain

Victor Frankl, the Concentration camp survivor, wrote in his seminal book on meaning in the face of suffering (Man's search for meaning): "Man lives in three dimensions: the somatic, the mental, and the spiritual. The spiritual dimension cannot be ignored, for it is what makes us human." Suffering can occur in several of these domains, can originate in any one or more of them and often encompasses them all simultaneously. The other term that is often used is "Total Pain", a concept first proposed by the founder of modern-day hospice and palliative care, Dame Dr. Cicely Saunders. Michael Kearney in his seminal book called "Mortally Wounded" calls it "soul pain".

1. Saunders CM. The management of terminal malignant disease, 3rd ed. London: Edward Arnold; 1993.
2. Man's Search for Meaning, Viktor Frankl. Beacon Press, 2006, ISBN 978-0-8070-1426-4

Palliative Care Approach

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Palliative Care Approach

Identify

  • Identify patients early who may benefit from palliative care

Assess

  • Their understanding of the illness & information needs
  • Symptoms
  • Psychosocial & spiritual needs
  • Quality of life
  • Values, wishes, preferences

Plan

  • Advance care planning

Manage

  • Symptoms
  • Psychosocial & spiritual needs
  • Essential discussions
  • Refer for assistance as needed
adapted from Thomas.K et al. Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC

Defining Palliative Care

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Defining Palliative Care

"The Palliative Care" Approach

  • This term refers to the primary- or generalist level palliative care that should be provided by health care professionals who are not palliative care specialists.
  • It requires essential palliative care-related competencies.
  • All health care professionals across many different disciplines (nurses, physicians, social workers, pharmacists, physio- and occupational-therapists, dieticians, paramedics, personal support workers and health care aides, etcetera) and across different settings (from home and community to hospitals, clinics and long term care facilities) should be equipped with these essential competencies ("The Palliative Care Approach")
  • This includes health professionals in primary health care (including family medicine and family health), internal medicine, oncology, pulmonology, cardiology, nephrology, neurology, emergency medicine, critical care, care of the elderly and geriatrics, to name a few.
  • Pallium Canada’s LEAP courses and the Pallium Palliative Pocketbook are geared towards providing the "Palliative Care Approach".

"Specialist Palliative Care"

  • "Specialist Palliative Care" is provided by health care professionals and teams with advanced training and experience in palliative care.
  • Services that provide "Specialist-Level" Palliative care include specialized palliative care units, consultation and support teams and hospices. They cover different settings as well, from home and community to hospitals.

The term "The Palliative Care Approach" was coined in Australia to differentiate the primary- or generalist-level palliative care from specialist palliative care. It recognizes that Palliative Care Specialists are also able to provide a Palliative Care approach but their palliative care-related skill sets and experience are more specialized.

Decision-Making Grid

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Decision-Making Grid

   

Medical Indications

  • What are the facts of the medical history and the condition, including prognosis?
  • What is the overall disease and symptom burden?
  • Are the symptoms or complications reversible?
  • If reversible, how invasive is the treatment to reverse?
  • What treatment is being proposed?
  • What are the risks and benefits related to treatment vs. non-treatment?
  • What is the functional level?
  • What is the estimated life expectancy?

Patient (and family) factors and preferences

  • If the patient competent?
  • Does the patient have the capacity to fully understand this situation?
  • Does he/she comprehend the situation?
  • Is he does not have the capacity, had he indicated to his family /POAs/surrogate decision makers what he would have wanted in these circumstances?
  • What is his understanding of his illness?
  • What are his expectations & preferences?
  • Has he undertaken advance care planning?
  • Does he have an advance directive?

Quality of Life

  • What does QOL mean for the patient (family)?
  • What are his physical, psychological, social and spiritual needs?
  • What is realistic or achievable with regard to the patient's preferences and expectations?

Contextual features

  • Has an incurable illness been confirmed?
  • Has disease progression been confirmed?
  • Whose interests are affected?
  • What are the thoughts of the caregivers and the issues/problems from their perspectives?
  • What does the law state?
  • What are the social norms and expectations?
Kuhl DR, Wilensky P. J Palliat Med. 1999;2(1):75-86

Ethical-Decision-Making Algorithm

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Ethical Decision-Making Algorithm

Ethical Decision-Making Grid

ESAS-r

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ESAS-r

What is it?

  • The ESAS (Edmonton Symptom Assessment Scales or System) is a short instrument that helps patients self-report the presence and severity of nine frequently occurring symptoms (physical and psychological) using a 0 to 10 numerical scale. There is space to report additional symptoms.
  • 0=no problem at all with that symptom, while 10=the worse possible severity imaginable for the patient.
  • It is a screening tool, not a diagnostic tool. Therefore, if a patient indicates the presence of a symptom, explore it in more detail. Also ask if there are other symptoms or problems that he/she is having but is not listed on the ESAS.
  • The ESAS is appropriate across the entire illness trajectory, not just for patients at the end of life. Patients in the last days of life are often not able to complete it.
  • The ESAS serves as a "window" or "stepping stone" to start exploring and documenting symptoms and needs.
  • It should be completed by the patient (self-reported).
  • If a patient is unable to read or write, a family member or caregiver can assist by circling the score as directed by the patient (i.e. it is based on what the patient says, not what the family member or caregiver's guesses it to be)
  • It is not valid if a patient has significant cognitive impairment (e.g. delirium or dementia)
  • Frequency of completion depends on the setting. In the home and outpatient clinics, it should be completed at each visit.
  • The nurse and physician should review it with the patient.
  • Ideally, keep a graph over time of the symptoms.

Why use it?

  • Studies show that patients will only volunteer a quarter to a third of the symptoms they are experiencing when we simply ask them "How are you feeling?" Using a standardized symptom screening instrument helps us better identify patients' symptoms and needs and provides patients with a way of telling us how they are feeling.
  • Studies show that using a standardized instrument such as the ESAS improves the assessment and management of symptoms , without adding more time to clinic visits.
  • There are many different instruments to screen for and assess symptoms. Many are long and burdensome. The ESAS is short and screens only for the most common symptoms. Clinicians can supplement the ESAS with more disease-specific assessments.
  • The ESAS is valid across the whole illness trajectory, not just for patients at the end of life. In fact, patients in the last days of life are often not able to complete it.
  • Numerous studies have explored and found evidence in support of the instrument's validity.
  • It has been largely used in Cancer populations, but there are also studies showing it to be useful in patients with advanced lung, heart and renal diseases.

How to use it?

  • "This is a short instrument that takes a few seconds to complete that will help us help you".
  • "It helps you tell us what symptoms you are feeling and how severe they are. We can then do our best to control them and make you feel more comfortable"
  • "It assesses 9 different symptoms, such as pain, anxiety, shortness and tiredness."
  • "For each, use a scale of 0 to 10 to rate the severity of the symptom; where 0= no problem at all and 10=the worst you can imagine the symptom to be at."
  • "Tell us how you are feeling right now. However, if it has been worse in the last 24 hours please tell us."
  • "Don't compare yourself to any other person. It is how you are feeling."
  • "Let me explain what is meant by anxiety, depression, tiredness... Depression means feeling sad, while anxiety means feeling nervous. Tiredness means lack of energy and drowsiness means feeling sleepy. Note that for appetite, if you have no problems with appetite, you score it as 0 whereas if your appetite is the worse you can imagine it to be, you should rate it at 10.
  • We will ask you to complete this whenever you see us. It helps us assess if our treatments are helping control the symptoms.
ESAS

Watanabe SM, Nekolaichuk C, Beaumont C, Johnson L, Myers J, Strasser F. A multi-centre comparison of two numerical versions of the Edmonton Symptom Assessment System in palliative care patients J Pain Symptom Manage 2011; 41:456-468.

Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991; 7:6-9.

Palliative Performance Scale (PPS)

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Palliative Performance Scale (PPS)

% Ambulation Activity & Evidence of Disease Self-Care Intake Level of Consciousness
100 Full Normal activity
No evidence of disease
Full Normal Full
90 Full Normal activity
Evidence of disease
Full Normal Full
80 Full Normal activity with effort
Evidence of disease
Full Normal/Reduced Full
70 Reduced Unable to do normal work
Evidence of disease
Full Normal/Reduced Full
60 Reduced Unable to do house work
Significant disease
Occiasional Assistance Normal/Reduced Full or Confusion
50 Mainly Sit/Lie Unable to do any work
Evidence of disease
Considerable Assistance Normal/Reduced Full or Confusion
40 Mainly in bed As Above Mainly Assistance Normal/Reduced Full or Drowsy or Confusion
30 Totally Bed Bound As Above Total Care Reduced Full or Drowsy or Confusion
20 As Above As Above Total Care Minimal Sips Full or Drowsy or Confusion
10 As Above As Above Total Care Minimal/nil Drowsy or Coma

Visit the National Palliative Care Research Center to learn more about the PPS

Copyright © 2001 Victoria Hospice Society

NuDESC

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Nursing Delirium Screening Scale (NuDESC)

Features and descriptions\Time* Symptom rating (0-2)**
I. Disorientation
Verbal or behavioural manifestation of not being oriented to time or place or misperceiving persons in the environment.
     
II. Inappropriate behaviour
Behaviour inappropriate to place and/or for the person (e.g. attempting to get out of bed when it is contra-indicated, pulling at tubes).
     
III. Inappropriate communication
Communication inappropriate to place and/or for the person (e.g. incoherence, non-communicative, unintelligible speech).
     
IV. Illusions/hallucinations
Seeing or hearing things that are not there; distortions of visual objectives.
     
V. Psychomotor retardation
Delayed responsiveness, few or no spontaneous actions/words; e.g. patient is difficult to arouse.
     
Total score***      

* Should ideally be completed at the end of each shift on a palliative care unit (e.g. q8 hrs)

** Scoring:
Symptoms absent = 0
Occasionally or mild = 1
Moderate to severe = 2

*** Total score of 2 or more: indicates the possibility of delirium which needs to be evaluated further with a clinical assessment.

Gaudreau, J.D., et al., Fast, systematic, and continuous delirium assessment in hospitalized patients: the nursing delirium screening scale. Journal of Pain and Symptom Management, 2005. 29(4): p. 368-375

Palliative Performance Scale (PPS) vs. ECOG

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Palliative Performance Scale (PPS) vs. ECOG

ECOG % Ambulation Activity & Evidence of Disease Self-Care Intake Level of Consciousness
0 100 Full Normal activity
No evidence of disease
Full Normal Full
1 90 Full Normal activity
Evidence of disease
Full Normal Full
80 Full Normal activity with effort
Evidence of disease
Full Normal/Reduced Full
2 70 Reduced Unable to do normal work
Evidence of disease
Full Normal/Reduced Full
60 Reduced Unable to do house work
Significant disease
Occiasional Assistance Normal/Reduced Full or Confusion
3 50 Mainly Sit/Lie Unable to do any work
Evidence of disease
Considerable Assistance Normal/Reduced Full or Confusion
40 Mainly in bed As Above Mainly Assistance Normal/Reduced Full or Drowsy or Confusion
4 30 Totally Bed Bound As Above Total Care Reduced Full or Drowsy or Confusion
20 As Above As Above Total Care Minimal Sips Full or Drowsy or Confusion
10 As Above As Above Total Care Minimal/nil Drowsy or Coma

Visit the National Palliative Care Research Center to learn more about the PPS

Visit the ECOG-ACRIN Cancer Research Group to learn more about the ECOG

PPS: Copyright © 2001 Victoria Hospice Society

ECOG: Ma C, et al. Eur J Cancer 2010

GSF Indicators of Decline

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About Indicators

Several frameworks and tools exist to help with the challenging task of predicting prognosis. It is not an accurate science, but they provide some guidance. Functional status and albumin levels are arguably the two most important indicators. The following are three tools that may be helpful.

These tools (indicators), drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?).

General and Disease-specific Indicators of Decline

Link to original

General Indicators of Decline

  • Performance status declining(PPS ≤ 50% or ECOG ≥ 3)
  • Progressive weight loss (≥10%) over past 6 months
  • Two or more unplanned admissions to hospital in past 6 months because of disease-related complications
  • A new diagnosis of a progressive, life limiting illness
  • Repeated unplanned /crisis admissions to hospital
  • Sentinel event (serious fall)
  • Serum albumin < 25g/l
  • Two or more advanced conditions (co-morbidity)

Cancer

These indicators, drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?)

General Indicators Plus:

  • Performance status deteriorating due to metastatic cancer (PPS ≤ 50% life expectancy in order of only a few months)
  • Metastatic disease
  • Significant weight loss due to primary cachexia
  • Refer to prognostic indicator tools (PPS, PaP, PPI): can help but do not refer to them blindly

Heart Disease (≥ of the following)

These indicators, drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?)

General Indicators Plus:

  • NYHA Class III/IV-dyspnea at rest on minimal exertion
  • Repeated hospital admission with heart failure symptoms
  • Persistent symptoms despite optimal tolerated therapy
  • Significant weight loss due to cachexia

Respiratory Disease (≥ of the following)

These indicators, drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?)

General Indicators Plus:

  • Severe airway obstruction (FEV1 <30%) or restrictive deficit (VC <60%).
  • Meets criteria for long term oxygen therapy (Pa02 <7.3kPa)
  • Breathless at rest or on minimal exertion between exacerbations
  • Persistent severe symptoms despite optimal tolerated therapy
  • Symptomatic right heart failure
  • Loss of appetite & weight
  • Recurrent hospital admissions (≥3 in last 12 month) due to disease

Renal Disease

These indicators, drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?)

General Indicators Plus:

Stage 4 or 5 chronic kidney disease (CKD)(eGFR <30ml/min) with at least 2 of the following indicators:

  • "No" to Suprise question
  • Patient chooses "no dialysis" option, discontinuing dialysis or not opting for dialysis if transplant failed
  • Difficult physical or psychological symptoms despite optimal tolerated renal replacement therapy
  • Symptomatic renal failure

Dementia

These indicators, drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?)

General Indicators Plus:

  • Unable to walk without assistance
  • Urinary and fecal incontinence
  • Unable to communicate meaningfully
  • Unable to do Activities of Daily Living (ADL)
  • Plus any of the following:

  • Weight loss
  • Urinary tract infections
  • Severe pressure sores (stage 3 or 4)
  • Recurrent fever (aspiration pneumonia, urinary tract infections)
  • Reduced oral intake

Neurological Disease

These indicators, drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?)

General Indicators Plus:

  • Progressive deterioration in function despite optimal therapy
  • Symptoms which are complex and difficult to control
  • Dysphagia leading to recurrent aspiration pneumonia; sepsis, dyspnea, breathless or respiratory failure
  • Speech problems with increasing difficulty communicating and progressive dysphasia

Liver Disease

These indicators, drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?)

General Indicators Plus:

  • Advanced cirrhosis with one or more complications:
    • Intractable ascites
    • Hepatic encephalopathy
    • Hepatorenal syndrome
    • Bacterial peritonitis
    • Recurrent varicea bleeds
  • Serum albumin <25g/l and PTT raised or INR prologned >2
  • Hepatocellular carcinoma
  • Not fit for liver transplant
Thomas.K et al. Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Link to orginal

Phases of Palliative Care

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Phases of Palliative Care

Phases of Palliative Care
www.pcoc.org.au

Surprise Question

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Ask the Question

Joanne Lynn. RAND Lecturer USA and senior advisor on end of life care
Gold Standards framework, UK.
You JJ, et al. Just ask: Discussing goals of care with patients in hospital with serious illness. CMAJ 2013. DOI:10.1503/cmaj.121274

Caveat

This does not mean that palliative care is limited to the last year of life. What it does is emphasize that palliative care is not limited to the last days or weeks, or even months of life. It does not mean that we need to be absolutely certain that life expectancy is less than 12 months- this is not possible. Patients may live longer or shorter than a prediction.

How To Use It

The question is just to make you more vigilant in your daily practice to patients with progressive life limiting illnesses who are at a high risk of dying within the next 6 to 12 months. It allows one to activate a palliative care approach, which will still be of benefit to a patient even if he/she lives longer (e.g. symptom control, quality of life enhancement, advance care planning, etc.).

Ask The Question

Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Thomas.K et al

Palliative Prognostic Index (PPI)

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About Indicators

Several frameworks and tools exist to help with the challenging task of predicting prognosis. It is not an accurate science, but they provide some guidance. Functional status and albumin levels are arguably the two most important indicators. The following are three tools that may be helpful.

These tools (indicators), drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?).

Palliative Prognostic Index (PPI)

Factor Partial Score
Palliative Performace Scale (PPS)(%) 10-20 4
30-50 2.5
≥60 0
Oral Intake Severely Reduced (≤ mouthfuls) 2.5
Moderately reduced (> mouthfuls) 1
Normal 0
Edema Present 1
Absent 0
Dyspnea at rest Present 3.5
Absent 0
Delirium Present 4
Absent 0
Maximum possbile 15

Palliative Alerts

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Palliative Alerts

Palliative Alerts

If not done already, Explore patient's understanding of illness,
discuss prognosis & goals of care.

Ensure ESAS & PPS/ECOG done at each visit.

If not done already, ensure Advance Care Planning is being undertaken.

Ensure home care resources in place (e.g. homecare nursing, primary care physician and emergency plans).

Establish plans to deal with emergencies (e.g. pain crisis).

If not done already, ensure discussion regarding code status (DNR and Advanced Directives).

Discuss preferred versus optimal place of death based on needs & circumstances.

Seow H et al. JCO 2011;29(9):1151-1158

Predicting 1-year Mortality Rate

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About Indicators

Several frameworks and tools exist to help with the challenging task of predicting prognosis. It is not an accurate science, but they provide some guidance. Functional status and albumin levels are arguably the two most important indicators. The following are three tools that may be helpful.

These tools (indicators), drawn from clinical experience and some evidence, correlate with an increased risk of death within the next few months. Some patients may live longer, while others may live shorter than just a few months. At the very least, they are useful in prompting a clinician to consider reviewing a patient's goals of care and activating a palliative care approach. The indicators help answer the Surprise Question (Will I be surprised if this patient dies within the next 6-12 months?).

Predicting 1-year mortality rate after admission to hospital

Step 1

Variable Score
Male Sex 1
Needs assistance with 1-4 ADLs at discharge 2
Needs assistance with all ADLs 5
Congestive heart failure 2
Cancer 3
Metastatic cancer 8
Creatinine >265 mol/l 2
Serum albumin 30-34 g/l 1
Serum albumin <30 g/l 2

Step 2

Variable Score
Total Score 1-year mortality %
0-1 4
2-3 19
4-6 34
>6 64

You JJ, et al. Just ask: Discussing goals of care with patients in hospital with serious illness. CMAJ 2013. DOI:10.1503/cmaj.121274

Walter LC, Brand RJ, Counsell SR, et al. Development and validation of a prognostic index for 1-year mortality in older adults after hospitalization. JAMA 2001;285:2987-94.

End-of-Life Checklist

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End-of-Life Checklist

  • Assess and address patient and family's information needs, including understanding of the disease & prognosis
  • Discuss withholding or withdrawing treatments, if applicable (e.g. artificial nutrition and hydration tubes)
  • Document discussions
  • DNR (“Do Not Resuscitate”) order in place (or “Allow Natural Death”- AND)
  • Power of Attorney(s) for Care and Finance decisions
  • See www.advancecareplanning.ca
  • Discontinue redundant medications (e.g. vitamin & calcium supplements, cholesterol medications, antihypertensive drugs if blood pressure low as often occurs at end of life), unless a patient has end-stage heart failure and the medication is helping control the symptoms
  • Select the right medication for patient's needs. For example, consider opioids only if the patient is experiencing moderate to severe pain or dyspnea. Avoid blanket orders that include an opioid, anticholinergic and midazolam if the patient is not experiencing pain, severe airway secretions, or an intractable symptom.
  • Review diabetes mellitus and hypertension medications (at end of life blood sugars and blood pressure tend to drop due to the advanced disease)
  • Have “emergency meds” available (Emergency Kit) in case patient is unable to swallow (e.g. parenteral formulations of key medications such as opioids, haloperidol, scopolamine)
  • Identify family members at risk for complicated grief and connect them with appropriate caregivers
  • Prepare children
  • Preparation and support for family to care and cope
  • Who to call if emergency occurs
  • Plan to avoid emergency department visits
  • Explore prefer place-of-death and assess whether this is realistic given patient needs
  • Explore options and resources required for each (e.g., home, residential hospice, palliative care unit, etc.)

Adapted from Cancer Care Ontario’s Palliative Care Disease Pathway

Death Pronouncement & Edith

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Death Pronouncement & Edith

Can be done by any nurse or physician

Preparation before entering the room

At the bedside

Pronouncement

Documentation

http://www.cpso.on.ca/policies-publications/policy/decision-making-for-the-end-of-life

FICA

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FICA: Identifying Spiritual and Religious Needs

F What is your Faith or belief? Do you consider yourself spiritual or religious? What things do you believe in that give meaning to your life?
I Is it Important in your life? What influence does it have on how you take care of yourself? How have your beliefs influenced in your behavior during this illness? What role do your beliefs play in regaining your health?
C Are you part of a spiritual or religious Community? Is this of support to you and how? Is there a person or group of people you really love or who are really important to you?
A How would you like me, your healthcare provider to Address these issues in your healthcare?

Visit the GW School of Medicine and Health Sciences to learn more about the FICA

©1999 Christina Puchalski, M.D., Reprinted with permission from Christina Puchalski, M.D.

Symptom Tips

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Symptom Tips

Other Usefull Information About Opioids

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Other Useful Information About Opioids

Opioid starting doses

Opioid Usual Starting Dose Frail Persons, very elderly & advanced heart & lung disease
Start with lower doses
Codeine 15mg q 4hr PO + 15mg PO q1hr PRN* 7.5 mg q 6hr PO + 7.5mg PO q2hr PRN*
Tramadol 37.5mg PO TID PO + 37.5mg PO QID PRN* 37.5mg PO BID PO + 37.5mg PO TID PRN*
Morphine 5mg q 4hr PO + 5mg PO q1hr PRN* 1mg or 2.5mg q 6hr PO + 1mg PO q2hrs PRN*
Hydromorphine 1mg q 4hr PO + 1mg PO q1hr PRN* 0.5mg q 6hr PO + 0.5mg PO q2hr PRN*

*Note that these are guidelines only. Doses need to be individualized to individual circumstances. The doses in patients with frailty may be even further reduced if necessary, e.g., patient with significant renal impairment as well.

Opioid equianalgesic dose ratios

Drug Approximate Equivalent Dose
  Oral Subcut (or IV)
Codeine 100mg -
Tramadol 50mg -
Morphine 10mg 5mg (3mg)
Hydromorphone 2mg 1mg (0.5mg)
Oxycodone 5-7.5mg -
Fentanyl - 50mcg
Methadone About 1mg; but various according to the previous opioid dose -

*These are approximate equivalences and serve only as guides When switching, reduce new opioid dose by 20%-30% in all cases.

Opioid Myths

Myth Fact
Opioids shorten life Opioids, if properly used do not shorten life
Opioids invariably sedate Upon initiation, some patients may experience some somnolence for a few days. This usually resolves. If it does occur, exclude opioid overdosing (a rare phenomenon in this patient population if appropriate practices are followed). If it does not resolve, reassess the patient for other causes. If it is related to the opioid, consider switching to another one.
Addiction is a big problem in this patient population. While it is recognized that in the general population, including patients who develop progressive incurable illnesses, addictions do occur in a small subset of patients, in the context of palliative care, this is not a concern. In most cases, increased doses are required to manage increased pain related to progression of the disease and the development of tolerance to the analgesic effects of opioids. However, it is important that clinicians take the necessary precautions (e.g contracts, single provider prescriptions, etc) if a clinician suspects a higher risk for addiction or elicit use or diversion.

Opioid addiction versus tolerance versus dependence

Tolerance:
Over time, larger doses are need to control pain. This is not addiction.

Dependence:
Withdrawal symptoms if the opioid is suddenly discontinued or excessively reduced. This is not necessarily addiction (although it may occur in persons with opioid addictions).

Addiction:
Psychological dependence; use for psychological "high" even when it causes harm.

Preventing and managing opioid side effects

Common side effects:

Constipation:

  • requires ongoing laxatives (senna or lactulose or PEG (Polyethylene glycol))
  • Do not require more than 1 type of laxative.
  • Docusate no longer recommended (ineffective as per randomized controlled trials)

Nausea:

  • Usually resolves after 3-5 days
  • Prescribe metoclopramide (10mg QID or PRN) or domperidone (10mg TID or PRN) for the first 3 to 5 days after initiating treatment.

Somnolence:

  • Usually resolves after 3-5 days
  • Do not drive until pain controlled & no somnolence

Less common side effects:

  • Opioid neurotoxicity
  • Sweating, dry mouth, pruritus
  • Respiratory depression (rare with appropriate dosing)

Opioid neurotoxicity versus opioid overdose

Opioid Neurotoxicity Opioid Overdose ("Narcotization")
  • More Common
  • Presentation - one or more of the following:
    • Myoclonus
    • Hallucinations
    • Agitation
    • Somnolence
    • Cognitive Dysfunction
    • Hyperalgesia, alloynia
  • Treatment
    • Reduce opioid dose (if toxicity mild and pain well controlled)
    • Switch opioid (if severe or/and pain poorly controlled)
    • Hydrate (in all cases to help eliminate opioid metabolites. Particularly morphine, hydromorphone, oxycodone and codeine.
  • Rare
  • Presentation - usually two or more present:
    • Miosis
    • Respiratory depression
    • Loss of consciousness
  • Treatment
    • Depends on severity
    • If mild to moderate: hold next opioid dose and reduce dose
    • If severe, naloxone

Delirium

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Important notice: Please note that there are many different guidelines, published and in the grey literature, related to the management of delirium in palliative care. Unfortunately, there is a dearth of studies to guide evidence-based guidelines. The recommendations suggested in this app represent Pallium Canada's best attempts at providing useful, best practice-based suggestions. Please note that they are suggestions only and clinicians ought to apply their own assessment and decisions in all cases.

Delirium DSM 5 criteria

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Delirium DSM 5 criteria

  1. A disturbance in attention (reduced ability to direct, focus sustain and shift attention) and reduced clarity of awareness and orientation to environment
  2. The disturbance develops over a short period of time (hours to a few days) and tends to fluctuate during the course of the day
  3. A change in cognition (such as memory deficit, disorientation, language or perceptual disturbance) not explained by a pre-existing or evolving neurocognitive disorder and not occurring in the setting of a severely reduced level of consciousness
  4. There is evidence (history, examination and investigations) of a general medical condition judged to be etiologically related to the disturbance

Clinical subtypes of delirium

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Clinical subtypes of delirium

Hyperactive: Predominantly features of agitation, increased psychomotor activity.

Hypoactive: Predominantly reduced psychomotor activity. Patient appears withdrawn and often somnolent. No agitation.

Mixed: Patient oscillates between periods of hyperactivity and periods of hypoactivity

Meagher D. Motor subtypes of delirium. Int Rev Psychiatry 2009;21:59-73
Lawlor P et al. Archives of Internal Medicine. 2000;160:786-794.
Meagher D et al. Features of subsyndromal and persistent delirium. British Journal of Psychiatry. Nov 10, 2011. Online ahead of print.

Managing Delirium

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Managing Delirium

Click the boxes to learn more about managing delirium.

Delirium Screening

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Delirium Screening

Look for delirium in daily practices. It is a common complication of advanced disease. Some inpatients teams use screening tools such as NuDESC.

Gaudreau, J.D., et al., Fast, systematic, and continuous delirium assessment in hospitalized patients: the nursing delirium screening scale. Journal of Pain and Symptom Management, 2005. 29(4): p. 368-375

Confirm Diagnosis

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Confirm Diagnosis

See the criteria to confirm a diagnosis. It requires a clinical assessment by the health care professional (history and examination). Instruments specifically design to help making a diagnosis are helpful; e.g. Confusion Assessment Method (CAM).

Controlling Symptoms of delirium

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Controlling Symptoms of Delirium (agitation, hallucinations)

Overall approach

Delirium Approach

Guiding principles

  • Treatments of underlying cause(s) take time (many hours to days) to take effect. While we wait for the treatments of the underlying causes (if appropriate and possible to treat these), we need to ensure that the symptoms are controlled. Symptom control is also the focus when the underlying causes cannot be reversed or it is inappropriate to try and reverse them (e.g. last hours or days, recognizing that prognostication is often not accurate).
  • Use non-pharmacological methods whenever possible.
  • If non-pharmacological approaches are ineffective or inadequate, use medications.
  • Several factors influence type and dose of medication (e.g. Severity)
  • Once controlled, try withdrawing medication or finding lowest dose possible.

Non-pharmacological approaches

  • Gentle, repeated reassurances
  • Reorientation
  • Reduce stimulation
  • Low ambient light
  • Low noise
  • Avoid physical restraints

Mild delirium

Mild agitation (e.g. RASS-Pal +1) and/or mild occasional, non-distressing hallucinations

  • Haloperidol is generally 1st line
    • Low dose and short term
    • Try first controlling only with PRN dosing
    • 0.5mg to 1mg PO or subcut q1hr PRN
    • ± regular dose 0.5mg to 1mg OD or BID
    • Subcut may be twice as potent as PO
    • Monitor for extrapyramidal side effects (EPS) & akathisia
  • Atypical antipsychotics
    • E.g. Risperidone, quetiapine, olanzapine (low doses)
    • Consider if haloperidol not tolerated or contraindicated or long term treatment required (e.g. irreversible delirium)

Moderate delirium

  • Moderate agitation (e.g. RASS-Pal +2) and frequent distressing hallucinations
  • Control quickly : Use PRNs first to achieve control and then maintain with regular dosing plus PRNs
  • Methotrimeprazine
    • More sedating than haloperidol
    • 5mg to 12.5mg PO or subcut q1hr PRN
    • ± regular dose of 5mg to 12.5mg PO or subcut BID to q8hrs

    Other options

  • Haloperidol at higher doses
    • 2mg PO or subcut q1hr PRN
    • ± regular dose 1mg to 2mg PO or subcut BID to q8hrs
  • Atypical antipsychotics
    • Few options if parenteral needed
      • Olanzapine not effective for severe delirium
    • Quetiapine PO

Severe delirium

  • Danger to him/herself and others. E.g RASS-Pal +3 or +4
  • Control quickly: Use PRNs. Then maintain with regular dose
  • Methotrimeprazine
    • 12.5mg to 25mg subcut q30min PRN
    • Then regular dose of 12.5mg to 25mg PO or subcut q8hrs to q6hrs

    OR

  • Midazolam
    • 1mg to 5mg subcut q15min to 30min
    • Consider antipsychotic medication dose at the same time (e.g. haloperidol or methotrimeprazine)
  • If refractory, consider sedation with midazolam infusion: criteria for palliative sedation need to be met

RASS-PAL

Score Term Description
+4 Combative Overtly combative, violent, immediate danger to staff (e.g. throwing items); +/- attempting to get out of bed or chair -
+3 Very agitated Pulls or removes lines (e.g. IV/SQ/Oxygen tubing) or catheter(s); aggressive, +/- attempting to get out of bed or chair -
+2 Agitated Frequent non-purposeful movement, +/- attempting to get out of bed or chair -
+1 Restless Occasional non-purposeful movement, but movements not aggressive or vigorous -
0 Alert and calm - -
-1 Drowsy Not fully alert, but has sustained awakening (eye-opening/eye contact) to voice (10 seconds or longer) Verbal Stimulation
-2 Light sedation Briefly awakens with eye contact to voice (less than 10 seconds) Verbal Stimulation
-3 Moderate sedation Any movement (eye or body) or eye opening to voice (but no eye contact) Verbal Stimulation
-4 Deep sedation No response to voice , but any movement (eye or body) or eye opening to stimulation by light touch Gentle Physical Stimulation
-5 Not rousable No response to voice or stimulation by light touch Gentle Physical Stimulation

Click here to learn more about the RASS-PAL

Bush SH, Grassau PA, Yarmo MN, Zhang T, Zinkie SJ, Pereira J. The Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL): a pilot study exploring validity and feasibility in clinical practice.

Delirium Management

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Delirium Management

Management requires doing three things at the same time:

  1. Identify and treat the underlying causes;
  2. Control the symptoms (particularly agitation and hallucinations);
  3. Educate patients, family and caregivers.

Identify & treat underlying cause(s)

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Identify & treat underlying cause(s)

Examples of underlying precipitating causes Examples of treatments of underlying causes
Opioid neurotoxicity Opioid switch, dose reduction and/or hydration
Medications Discontinue or reduce
Dehydration IV or hypodermoclysis
Hypercalcemia Bisphosphonate (or calcitonin if renal impairment) plus hydration or hydration only if mild
Infection Antibiotics (therapeutic trial)
Brain metastases Corticosteroid

Educate Patient, Family & Caregivers

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Educate Patient, Family & Caregivers

Screening and Diagnosis

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Screening and Diagnosis

Coming Soon!

Managing Dyspnea

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Managing Dyspnea

Click the boxes to learn more about managing dyspnea.

Screen and Confirm Diagnosis

  • Ask the patients if they are experiencing short of breath. Don't rely on how they look and what lung function tests or oxygen saturations are reporting.
  • Dyspnea is a subjective symptom. There are patients who may appear to be short of breath (tachypnea and using accessory breathing muscles) who are not feeling short of breath. There are others who don't look short of breath but are experiencing shortness of breath, sometimes even severe (in some cases even when there is no apparent lung involvement).
  • Oxygen saturations and lung function tests do not necessarily correspond with the level of shortness of breath.
  • Use a scale (e.g. ESAS to screen for and to assess dyspnea).

Management

Management requires doing three things at the same time: 1) Identify and treat the underlying causes; 2) Control the symptom; and 3) Educate patients, family and caregivers.

Educate patient, family & caregivers

Discuss with patients, family and other caregivers what is happening, including the care plan. Educate them on what constitutes dyspnea. It is important to recognize that dyspnea is what the patient reports and not necessarily their breathing pattern.

Control symptoms

Opioids

  • Safe and effective
  • Diminishes the sensation of being short of breath
  • Usefulness and safety in cancer, ALS and end-stage heart and lung diseases confirmed in randomized studies
  • Use same way as in cancer pain (regular dose plus PRN, except start with lower doses and titrate slower). (See opioid section for starting doses)
  • Usually given PO or subcut or IV. Nebulized opioids not generally recommended.

Oxygen

  • Useful for patients with hypoxia. Start with lower volumes in patients with severe COPD.
  • Role in non-hypoxic patients less clear (Some individuals may benefit but not generally recommended)
  • If a patient is terminal and not complaining of shortness of breath, there is no need to start oxygen

Benzodiazepines

  • Limited to patients with significant underlying panic disorder and anxiety disorder. May be helpful in select cases where dyspnea causes severe anxiety
    • Clonazepam 0.5-1 mg q6-8hr PO
  • Consider midazolam in case of severe dyspnea crisis or intractable dyspnea at EOL (palliative sedation)- if so, ensure criteria for palliative sedation are met

Adjuvant medications for dyspnea

  • Methotrimeprazine
    • Role unclear, but consider a trial if dyspnea severe and not responding to opioids & oxygen
    • Regular or PRN dosing: 2.5-12.5 mg bid-tid PO or subcut and/or PRN
  • Steroids
    • For lymphangitic carcinomatosis, severe COPD
  • Bronchodilators
    • Only if broncho-constriction (wheezing heard)
  • Diuretics
    • For congestive heart failure, pulmonary edema

Non-pharmacological measures

  • Fan
  • Position: lean forward, head up
  • Avoid irritants
  • Avoid exacerbating activities
  • Relaxation
  • Breathing control techniques

Identify & treat underlying cause(s)

  • In some patients there are more than one cause of dyspnea (e.g. pleural effusion and underlying COPD).
  • To what extend one will look for the underlying causes and treat them depends on several factors. These include:
    • The illness trajectory: It would be more appropriate to do investigations and look for underlying causes in someone who is earlier in the illness trajectory versus someone who is in the terminal phase (last days and hours);
    • Reversibility of the cause;
    • Availability of treatments;
    • Goals of care and patient wishes and values;
    • Etc.
  • Causes can be divided in the following domains:
    • pulmonary causes: e.g. lung metastases, pleural effusion, infections, airway obstruction, etc;
    • Cardiac: e.g. heart failure;
    • Systemic: e.g. anemia;
    • Neurological: e.g. Respiratory muscle weakness;
    • Other: e.g. large volume of ascites.
Causes of dyspnea Possible treatments for underlying causes
Pleural effusion thoracentesis
Large airway obstruction stenting, steroid, radiotherapy
Pneumonia antibiotics
Lymphangitic carcinomatosis steroids
Anemia therapeutic trial of transfusion as appropriate
CHF and COPD optimize medications
ALS non-invasive ventilation

Symptom Tips

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Nausea and Vomiting

Causes in Palliative Care

Often several causes at the same time

  • Constipation
  • Abdominal disease
    • Tumors, metastases
  • Cachexia with inflammatory state
  • Gastroparesis
  • Metabolic causes:
    • Hypercalcemia, uremia, hyponatremia
  • Chemotherapy, RXT
  • Medications
    • Opioids (at start of treatment)
    • SSRIs, NSAIDs
  • Malignant bowel obstruction
  • Increased intracranial pressure
  • Oral candidiasis
  • Poor oral hygiene
  • Anxiety

Nausea pathways, mechanisms and treatments

Brain Diagram

Anti-emetics in palliative care

  • Depends on underlying mechanism
  • 1st line agents:
    • Metoclopramide 10mg PO QID PO/Subcut and PRN
    • Domperidone 10mg TID PO (max dose 30mg/day)
  • 2nd line agents:
    • Ondansetron 4 or 8mg PO/subcut BID or TID
    • Methotrimeprazine: low dose (2.5mg to 5mg PO TID and PRN)
    • Haloperidol: low dose 0.5-1mg subcut BID (particularly if bowel obstruction)
    • Dimenhydrinate: 25mg or 50mg TID and PRN subcut (particularly if bowel obstruction)
  • 3rd line agents:
    • Dexamethasone 2mg to 4mg PO/subcut OD
    • Nabilone 1mg PO BID
  • Use haloperidol, methotrimeprazine or dimenhydrinate if nausea and vomiting caused by malignant bowel obstruction (avoid metoclopramide if complete bowel obstruction)

Bowel Care & Constipation

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Bowel Care & Constipation

Scope of problem

  • Constipation occurs very frequently in palliative care. Most patients, for example, are on opioids. Many patients when the disease is advanced are bedridden and immobile.
  • Constipation is often missed if it is not regularly screened for and assessed.

Causes

Examples:

  • Medications (e.g. opioids, anticholinergic agents, ondansetron)
  • Autonomic neuropathy
  • Ileus
  • Abdominal masses
  • Social: embarrassment when bedridden or hospitalized

Assessment

  • Ask about usual bowel pattern (varies a lot between individuals)
  • Some useful questions to assess:
    • D:  Difficulty - more difficult than usual?
    • I:  Infrequent - more infrequent than usual?
    • S:  Size - smaller than usual? (Size)
    • H:  Harder - harder than usual?
    • Effectiveness of current laxative regimen?
    • How tolerable is current laxative regimen?
  • Physical exam: don't forget to do abdominal examination and assess bowel sounds, as well as rectal exam (often not done)
  • Investigations
    • May consider Abdominal X-ray (Constipation Score) in select cases

Constipation Score

  • A scoring system to describe the amount of stool present has been used in palliative care. It is useful to quantify fecal load. It does not assess fecal transit time.
  • Draw two diagonal lines across the abdominal x-ray, transecting at the umbilicus. This divides the abdomen into 4 quadrants, corresponding to the ascending, transverse, descending and recto sigmoid colons. Stool appears either as larger round opacities in the colon or has a "dotted" look of multiple small opacities. Then assess the amount of stool in each of the four quadrants using the following score:
    • 0 = no stool
    • 1 = stool occupying less than 50% of the lumen
    • 2 = stool occupying greater than 50% of the lumen
    • 3 = stool completely occupying the lumen of the colon
  • The score will therefore range from 0 to 12.
  • A score of greater than or equal to 7 indicates significant constipation and may require immediate treatment.

Prevention with laxatives

  • Start laxative when starting opioids
    • Most patients require ongoing regimen
  • Lack of studies comparing various laxatives
  • 1st line agents (select one):
    • Lactulose 15-30ml OD PO
    • Senna 1 tab OD PO HS
    • Polyethylene glycol 17gm in 250ml liquid OD PO
      • Consider provincial drug coverage
  • Titrate to achieve bowel movement at least every 3rd day
  • If ineffective, change to alternative
  • Avoid docusate, ineffective
  • Avoid bulking agents/psyllium (require high fluid intake which is often not tolerated in patients with advanced disease)
Librach SL,, et al. J Pain Symptom Manage. 2010;40(5):761-773

Treatment of established constipation

  • Fleet enema
  • Dulcolax or Glycerin suppository
  • Manual disimpaction
    • If impacted stool in rectum; do with some sedation and analgesic as can be uncomfortable and painful
  • Methylnaltrexone subcutaneously
    • Rarely needed
    • Only for opioid-induced constipation
    • Contraindications: bowel obstruction or impacted stool
  • Once constipation cleared, readjust prevention regimen

Hydration

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Hydration

When is artificial hydration appropriate?

  • Depends on the goals of care, illness trajectory and goals trying to be achieved.
  • Earlier in illness:
    • Management of delirium if dehydration cause or contributing factor
    • Opioid neurotoxicity
  • In the terminal phase:
    • Reduction in oral fluid intake is normal in the terminal phase
    • Dehydration generally does not cause thirst
    • Artificial hydration may worsen edema (peripheral and lungs)
    • Therefore, generally limited role for artificial hydration
    • Sometimes may need to continue due to cultural or religious beliefs: but discontinue if causes S/E

When is artificial hydration not appropriate?

  • Depends on the goals of care, illness trajectory and goals trying to be achieved.
  • Earlier in illness:
    • If a patient refuses it
    • If patient has significant fluid overload
  • In the terminal phase:
    • Reduction in oral fluid intake in is normal in the terminal phase
    • Dehydration generally does not cause thirst
    • Artificial hydration may worsen edema (peripheral and lungs)
    • Therefore, generally limited role for artificial hydration

How is artificial hydration provided?

  • There are two ways to provide hydration: IV or subcutaneously (referred to as hypodermoclysis)
  • Hypodermoclysis
    • Subcutaneous administration using a butterfly needle (plastic better than metal) or CLEO set
    • Use normal saline
    • Volumes
      • Continuous: 30ml to 80ml/hr
      • Intermittent: e.g. overnight
      • Bolus: Up to 100ml/hr (less tolerated)
    • Site
      • Lower abdomen, thighs, chest
      • Swells during infusion (normal)
    • Advantage over IV
      • Easy to insert
      • Easy to maintain
      • Fewer infections than IV
Sasson M, Shvartzman P. Hypodermoclysis: An Alternative Infusion Technique. Am Fam Physician 2001;64:1575-8

Cachexia and Artificial Nutrition

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Cachexia and Artificial Nutrition

The Cachexia Syndrome

Cachexia Syndrome Diagram

Cachexia Syndrome

Cytokines (e.g. interleukin-1, interleukin-6, tumor necrosis factor and protein cachexia factor) are produced by the cancer cells or other advanced disease (e.g. endstage heart or lung disease or AIDS) and by their interaction with the immune system. These products alter metabolism resulting in a catabolic state - characterized by protein and lipid breakdown leading to weight loss. In addition to the chronic inflammatory start, other mechanisms are also involved, namely:

  1. Dysregulation of hypothalamic function
  2. Hormone resistance (insulin & growth hormone)
  3. Activation of muscle proteolysis
  4. Increase loss of fat
  5. Resting energy expenditure in patients with end-stage heart disease related cachexia, in addition to the above, one finds neurohormonal and immune abnormalities, raised plasma levels of norepinephrine, epinephrine, and cortisol, high plasma renin activity and increased plasma aldosterone levels

Unfortunately, we do not have treatments that can reverse this.

Definition by Evans et al

A complex metabolic syndrome associated with underlying illness. Characterized by loss of muscle (with or without loss of fat mass). Prominent clinical feature include weight loss (corrected for fluid retention). Anorexia, inflammation, insulin resistance and increased muscle protein breakdown are frequently associated. It is different to starvation, age-related loss of muscle mass, primary depression, malabsorption and hyperthyroidism. Associated with increased morbidity & mortality.

Evans WJ, Morley JE, Argilés J, et al: Cachexia: A new definition. Clin Nutr 2008;27:793-799

Definition by Fearon et al

  • Cancer cachexia defined as a multifactorial syndrome
    • Ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment.
  • Pathophysiology characterised by a negative protein and energy balance driven by a variable combination of reduced food intake and abnormal metabolism.
  • Weight loss greater than 5%, or weight loss greater than 2% in individuals already showing depletion according to current bodyweight and height (body-mass index [BMI] <20 kg/m2) or skeletal muscle mass (sarcopenia).
  • Cachexia syndrome can develop progressively through various stages: precachexia to cachexia to refractory cachexia.
Fearon K, Strasser F, Anker SD, et al. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol. 2011;12:489-495

"Cachexia syndrome" vs. "secondary cachexia"

Cachexia syndrome (primary cachexia)

  • Caused by inflammatory state resulting in altered metabolism.
  • 3 stages:
    • Pre-cachexia (early)
    • Cachexia
    • Refractory cachexia
    • In Cachexia, and Refractory Cachexia, treatments such as appetite stimulants and artificial feeding are not helpful

Secondary cachexia

  • Weight loss due to cause(s) other than cachexia syndrome, e.g.
    • Depression
    • Nausea
    • Poor oral hygiene
    • Xerostomia
    • Reversible dysphagia
  • Addressing these problems results in increased food intake and weight gain.
  • Always exclude reversible causes when assessing cachexia in a patient with advanced disease and weight loss.
Evans WJ, Morley JE, Argilés J, et al: Cachexia: A new definition. Clin Nutr 2008;27:793-799.

Artificial nutrition in patients with advanced disease and cachexia syndrome

Role in advanced disease

  • "Artificial nutrition" refers to enteral feeding via nasogastric (NG) or percutaneous gastrostomy feeding (PEG) feeding tube; or parenteral feeding as in Total Parenteral Nutrition (TPN) via a large central vein.
  • When weight loss is caused by advanced disease (e.g. advanced cancer, advanced AIDs, end-stage heart or lung disease), artificial nutrition has not generally been shown to improve quality of life or even prolong life.
  • In these situations, it can burden:
    • Enteral feeding: tubes, aspiration risk
    • TPN: septicemia, electrolyte disturbances, frequent blood tests needed, hospitalized
  • Avoid offering it simply for psychological support and reasons; it creates false hope.

When is artificial nutrition indicated?

  • An identifiable & reversible cause of weight loss is present
  • Reduced food intake because of therapy-responsive tumor causing dysphagia
  • Pre-operative treatment of malnutrition in surgically resectable tumor

When a patient complains of weight loss

  • Explore what it means for the patient & family
  • Explain reasons for appetite & weight loss (cachexia)
  • If advanced cachexia syndrome from advanced disease, provide following nutritional counselling
    • "Eat what you can, enjoy and tolerate"
    • Eat small meals and have snacks throughout the day instead of large meals to avoid early satiety & nausea

Appetite stimulants

Indicated when:

  • Loss of appetite not related to primary cachexia syndrome
  • Pre-cachexia phase of cachexia syndrome
  • Enjoyment of eating when cachexia advanced
    • After explanation given to avoid false hope

Appetite stimulants - Mixed results reported with the following:

  • Omega-3 fatty acids
  • Cannabinoids THC (nabilone)
  • Megesterol acetate
    • Increases fat/lipid, but not muscle mass
    • Expensive
    • Increased risk of clots
  • Corticosteroids
    • Effective for short duration (3 to 4 weeks). Weight gain may occur but this is generally due to water retention and not build up of muscle or slowing down of cachexia syndrome. Longer use may aggravate weakness throughout proximal myopathy. Avoid using this as first line agent. Note that this is an off label use in Canada.
  • Mirtazepine

Depression

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Depression

Prevalence in advanced disease

  • Major depression: 11%- 18%
  • Major anxiety disorder: 7%-13%
  • Adjustment disorder: 10%-22%
  • All depression (major, minor, dysthymia): 17% -32%
Mitchell AJ, et al. Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies. Lancet Oncol 2011; 12: 160-74

Diagnosing in advanced disease

  • Challenge: Somatic symptoms that used in the diagnosis of depression are often non-specific in advanced disease (they are caused by the disease itself).
    • E.g. Weight loss, fatigue, appetite loss, psychomotor retardation.
  • Other symptoms, in addition to the usual psychological ones such as anhedonia, that are useful in diagnosing depression in the palliative care context include pervasive feelings of worthlessness, guilt, hopelessness and a death wish (I wish I could just die; not necessarily suicidal ideation or request to hasten death). Look as well for signs such as tearfulness, depressed appearance, brooding, social withdrawal, pessimism, lack of reactivity, cannot be cheered up.
  • Demoralization, characterized by a profound loss of meaning and hopelessness (without the other signs of depression) is considered by some to be a separate syndrome to depression.

Supportive counseling

Management of sadness and depression

  • Supportive counseling is indicated in all cases
  • Consider referral to psychiatrist and/or psychologist if severe.
  • Involves:
    • Exploring feelings, fears, and goals
    • Identifying strengths and coping strategies
    • Re-establishing self-worth
    • Reframing hope
    • Providing ongoing support

Pharmacological treatments

  • Pharmacological management is indicated in select patients (not all patients with sadness), particularly if the level of depression affects the ability of the person to function.
  • Medications that are used in the palliative care setting include:
    • Citalopram (sedating)
    • Venlafaxine (stimulating)
    • Mirtazapine (sedating, appetite stimulation)
    • Duloxetine (if requires adjuvant analgesic)
    • Methylphenidate (short onset of action, therefore useful for patients with limited life expectancy.
    • Contact a palliative care physician or psychiatrist for advice regarding selection and dosing of antidepressant.

Airway Secretions

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Airway Secretions

Palliative Sedation

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Palliative Sedation

Definition

  • "the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family and health-care providers."
  • Goal is to achieve comfort at lowest dose and lightest level of sedation possible.
Cherny N, Radbruch L, et al. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Pall Med 2009;23(7) 581-593

Criteria for Palliative Sedation

  • Refractory (intractable) symptom
    • All else has been tried or usual treatments not available
  • Death is imminent
    • Within days to several days
  • DNR in place
  • Consent from patient or proxy (e.g. substitute decision maker or POA)
  • Address hydration & nutrition - discuss
    • Usually at the very end of life patients stop eating and drinking as part of the dying process
    • Do not have to be discontinued
  • Preferably decision made as a team (interprofessional)
  • Assessed by or discussed with Palliative Care specialist (team)
Cherny N, Radbruch L, et al. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Pall Med 2009;23(7) 581-593

Last days and hours

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Last days and hours

Prepare early

Start preparing earlier in illness for EOL

  • Review Goals of Care
  • Ensure ACP done & DNR in place
  • Discuss preferred place of death
  • Discuss plans in case of emergency
  • Ensure plans for home death if so preferred
    • Pronouncement
    • Death certificate completion
  • Explain to family signs of imminent death

Anticipate inability to swallow medications & other emergencies

  • Emergency meds & supplies in the home
    • Opioid subcut
    • Haloperidol subcut
    • Subcut supplies
  • "Emergency kit"
  • Encourage funeral home preparations

Review goals of care, treatments & medications

  • Consider discontinuing:
    • Redundant oral medications (e.g. lipid lowering medications, anti-hypertensives, LMWH for primary thromboprophylaxis, etc.)
    • Intravenous or subcutaneous fluids
    • Oxygen
      • if patient is unconscious or finds oxygen administration uncomfortable

Educate families on what to expect

Signs that death is imminent

  • Increased periods of sleeping & unconsciousness
  • Changes in respiratory rhythm & rate
    • Cheyne stoke breathing
    • Agonal breathing, etc.
  • Reduce peripheral perfusion/weak pulse
  • Skin mottling
  • Airway secretions

Educate families & caregivers on what to expect

Examples

  • Signs of imminent death
  • Address questions related to hydration and nutrition
  • Explain airway secretions
  • Explain normal dying patterns (e.g. Cheyne Stoke breathing is a normal phenomenon and not a sign of suffering)
  • Funeral arrangements

Manage Airway secretions

See Airway Secretions

Patients at risk for terminal bleeding

Patients at risk:

  • large neck mass invading large vessels
  • Large open malignant wound with exposed blood vessel
  • Prior episodes of hemoptysis, upper GI or rectal bleeding

Prepare family/caregivers if patient at risk:

  • Dark towels
  • Midazolam 5mg pre-drawn vial in dark envelope available (subcut site in place)
  • Lateral position if hemoptysis or upper GI bleed
  • Avoid calling 911

"Comfort measures"

  • Avoid blanket orders such as "Midazolam PLUS opioid PLUS glycopyrrolate or scopolamine"
  • No need to start "morphine drip" if there was no pain before
  • No need to start midazolam drip if there is no refractory symptom and palliative sedation is not required
  • No need to start anti-cholinergic agent if there are no air-way secretions
  • No need to start Oxygen simply if a patient's respiratory pattern changes (particularly if unconscious or conscious but not complaining of dyspnea)

Palliative Sedation

See Palliative Sedation

Death pronouncement

  • Allow family to stay in room
  • Observe: breath or other movements
  • Confirm absence of pulse and heart and lung sounds
  • Confirm dilatation of pupils
  • Document above

Coroner to be notified only if:

  • Suspicion of unnatural death
  • Recent fall or surgery
  • If not sure
  • Note: See provincial requirements

Care of body

Completing death certificate

  • Avoid writing "cardiac arrest" or "respiratory arrest"
  • Indicate main cause of death as the main underlying disease (e.g. lung cancer, congestive heart failure, etc.)
  • Death certificate to be completed within 24 hours
  • In most jurisdictions, funeral home may collect body without death certificate if expected death

Contact coroner before moving body if:

  • Unexpected death
  • Recent surgery
  • Recent accident or fracture
  • If uncertain

Grief

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Grief

Useful points

  • Usually a normal and healthy response to loss
  • Difficult to attach a time frame. Normally grieving persons may re-experience grief reactions many months and years after the losses, especially during anniversaries, special holidays, birthdays, etc.
  • The grief experience
    • Physical symptoms, psychological, cognitive, spiritual
    • The intensity or degree of grief depends upon the person who is experiencing it, the culture, the relationship with the person who died and the way they died, etc.
  • Different types of grieving
    • E.g. anticipatory, normal, complicated, etc.
  • Signs that grief is abnormal or complicated
    • Unable to function
    • Severe depression
    • Suicidal
    • Pervasive and severe symptoms

Persons at risk for complicated grief

Risk Factors for abnormal or complicated grief

  • Loss of child
  • Dependent relationship
  • Unexpected or violent loss
  • Multiple losses
  • History of psychiatric illness or poor coping
  • Lack of social support
  • Losses resulting in major changes
    • Negative financial changes
    • Loss of role, admission into LTC
  • Elderly male widower

Conversations

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Helpful Phrases

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SPIKES (breaking bad news)

Adapt to individual situations

  • Setting
  • Patient's expectations
  • Invitation
  • Knowledge
  • Exploring & Empathy
  • Strategy & Summary
Baile W.F., et al. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. The oncologist 2000; 5(4):302-311

FIFE (eliciting concerns)

Adapt to individual situations

  • Function: "How is this affecting you?"
  • Ideas: "What concerns you most?" "What do you symptoms mean to you?"
  • Feelings: "How are you managing all of this?" "How are you feeling?"
  • Expectation: "What concerns do you have about what is happening and what the future holds?" "What are your hopes & wishes?"
  • Empathy"It must be difficult?" "Lets plan the next steps together" "What resources do you need?"
Stewart MA., Effective physician-patient communication and health outcomes: a review. CMAJ 1995; 152(9):1423-1433

Behaviors to avoid

Adapt to individual situations

  • Blocking
  • Lecturing
  • Collusion
  • Premature reassurance
Maguire P. Improving communication with cancer patients. Eur J Cancer. 1999; 35(10): 1415-1422

Behaviors to cultivate

Adapt to individual situations

  • Ask-Tell-Ask
  • Tell me more
  • Don't be afraid to use the words "death" and "dying" if talking about it.
  • Respond to emotions (NURSE)
    • Name the emotion
    • Understand
    • Respect (verbal or non-verbal)
    • Supporting
    • Explore
Maguire P. Improving communication with cancer patients. Eur J Cancer. 1999; 35(10): 1415-1422

Disease progression

Adapt to individual situations

  • "Are you someone who wants as much information as possible about your illness or you would prefer someone else to get that information."
  • "How much and what information do you need?"
  • "Have you noticed things changing?"
  • "What do you feel is happening with your illness?"
  • "I'm afraid there are signs that the disease is progressing"
  • "I think it is important to hope for the best and also prepare for worse"
  • "I wish I could be saying that we can cure or control your illness, but I would be lying if I did."
  • Listen and use silence

Initiating Goals of Care discussions

Adapt to individual situations

  • "What do you feel is happening with your illness?"
  • "What do you understand about your illness or what's happening to you?"
  • "What do you think has been the effect of the treatments?"
  • "Unfortunately, your illness is not curable. There are signs that it is progressing. [silence]."
  • "Does this come as a surprise to you?"
  • "I would like us to discuss what the treatment goals could be if cure or control is no longer possible."
  • "I am talking about ongoing care and treatments, but treatments that will focus on you being as comfortable as possible in whatever time you may have, whether it be many months or weeks."
  • "Is this information useful for you? Do you need more information?"
Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the "elephant in the room". JAMA 2000; 284(19): 2502-2507

Discussing Palliative Care

Adapt to individual situations

  • "What do you understand about your illness?" [discuss]
  • "Given that you are experiencing symptoms from your illness, we need to ensure that your quality of life is as best it can be."
  • "Given that your illness is progressing despite the treatments you have received, we need to review the goals of care."
  • "I think we need to consider a Supportive and Palliative Care Approach, alongside treatments to control your illness."
  • "Many people think that Palliative Care is only for end-of-life care. That is not correct. It is an approach that helps patients whether their illness is under control or progressing."
  • "This does not mean that we stop caring for you, it simply means that we focus on the type of care that is most appropriate and realistic given your illness".
  • "We will continue treating the disease while making sure your symptoms are well controlled and we make the right decisions."
  • Listen and use silence

How long do I have to live?

Adapt to individual situations

  • Step 1: "That must be an important question for you?"
  • Step 2: "We are not very good at predicting?"
  • Step 3: "I think it is in the order of [days/weeks/months/many months/years]" Or
    "I don't know, I will talk to the specialist to get more information"
  • Step 4: "Does this come as a surprise to you?"
  • Step 5: "Remember we could be wrong... it may be longer... or shorter than what I think"
  • Step 6: "I want you to know that no matter what the time is we will get you the best care"
  • Step 7: "No matter how much time there is, there is still living to be done"
  • Listen and use silence
Loprinzi CL, et al. Doc, how much time do I have? J Clin Oncology. 2000; 18(3): 699-701

DNR discussions

Adapt to individual situations

  • "There is an important discussion we need to have. It may be difficult, but it will help you, your family and your care team ensure the right care is given".
  • "Do you know what 'CPR' or 'cardiopulmonary' resuscitation means?" [explain, describing what happens during CPR - chest compressions, tubes, shocks, etc.]
  • "I want you to know that I am recommending a "Do Not Resuscitate" or "DNR" for you. That means that when your heart and lungs stop naturally, we will not do CPR. I recommend this because, unlike what you see in the movies and TV, CPR is almost always unsuccessful in situations such as yours where someone has very advanced disease. In the unlikely even that CPR is successful (less than 1% of cases), you will most likely have to be connected to a life support machine and will suffer from broken ribs. I don?t think that this is consistent with your goals of care."
  • "How do you feel about what I have just said?"
  • "Does this come as a surprise to you?"
  • Listen and use silence
Von Gunten CF. Discussing do-not-resuscitate status. J Clin Oncology 2001; 19(5): 1576-1581

Initiating Advance Care Planning

Adapt to individual situations

  • "We like to discuss with each person what they want for end-of-life care so we can honor their wishes. Can we talk about this now?"
  • "We ask everybody if they have an advance care plan or power of attorney in case a situation arises that they are unable to make decisions for themselves. Do you have these in place?"
  • "Do you know what these terms mean?"
  • "Are there any medical treatments which you would not want if you had a very advanced incurable disease?"
  • "Is there Information you need to make decisions about the kinds of treatment you do or do not want if you become very sick with a life-limiting illness?"
  • "Please visit www.advancecareplanning.ca for very helpful information on the topic, including short videos and workbooks"

Helping with Advance Care Planning

Adapt to individual situations

  • "Advance care planning is about reflecting on your wishes and values related to end-of-life care, identifying someone who would make decisions on your behalf if you are longer able to, and documenting these wishes."
  • "If you are unable to make decisions for yourself, whom would you want to make decisions (about care and about finances) on your behalf?"
  • "It is important to chose someone who knows you well and will make decisions that are consistent with your own wishes and values. This is a called a Power of Attorney for Health [the term may differ across provinces]"
  • "It is wise to also have a Power of Attorney for your finances. This may be the same person as the Power of Attorney for Health or someone else whom you trust will handle your finances well"
  • "The Power of Attorney will only be activated if you are no longer able to make decisions for yourself:
  • "Have you talked to your Power of Attorney (or substitute decision maker/agent etc.) (or anyone else) about your wishes or preference for health care decision that may come up or for end of life care?"
  • "You can always revisit these in the future, especially if your health changes."
  • "If you change your mind at any time, please let me know so that we can discuss this."
  • "Please visit www.advancecareplanning.ca for very helpful information on the topic, including short videos and workbooks"

Helpful Approaches

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Coming Soon!

ABCDs of Dignity Conserving Care

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Important Background

  • Please visit Dignity Conserving Website of Dr. Harvey Chochinov et al for more details regarding this therapy, including a useful toolkit.
  • Dignity therapy, developed by Chochinov et al and based on extensive research where hundreds of patients were asked what dignity meant for them and what enhanced their sense of dignity, facilitates review of one's life and provides the opportunity for the dying to reflect upon issues that matter most to them or speak of things they would most want remembered as death draws near.
  • Chochinov's ABCDs of Dignity Conserving Care include a set of attitudes, behaviours, compassionate behaviour and questions (dialogue) that enhance a person's sense of Dignity. The full Dignity Conserving Therapy Approach requires taping the responses of patients to these questions and developing a legacy document. In the absence of resources and time to do the full therapy, the questions themselves are useful to engage the patient in dialogue and to prompt patient reflection.
  • These discussions can not be enforced. Be attentive to signs from patients and families who wish to either not engage in these discussion or who wish to bring them to an end.

Attitudes

  • How would I be feeling in this person's shoes?
  • What is leading me to draw those conclusions?
  • Am I aware how my attitudes toward the person may be affecting him or her?
  • Could my attitude towards the patient be based on something to do with my own experiences, anxieties, fears?

Behaviour

  • Paying attention to the tone of contact & voice
  • Looking at person
  • Going the extra mile

Compassion

  • Getting in touch with one's own feelings
    • Before entering room and in presence of patient
  • Spoken or unspoken communication that acknowledges the person beyond their illness
  • An understanding look
  • A gentle touch on the shoulder, arm or hand
  • "This must be frightening for you"
  • "I can only imagine what you must be going through"

Dialogue

  • "What do I need to know about you as a person to give you the best care possible?"
  • "At this time in your life, what are the things that are most important to you, or that concern you most?"
  • "What are you most proud of in your life?"
  • "Are you concerned about how your illness is affecting other people close to you?" (burden)
  • "How are you coping with what is happening?"
  • "Are there things about you that this illness does not affect?"
  • "Can you tell me a little about your life history, particularly those parts that are the most important?"
  • "How at peace are you with what is happening to you?"
  • "What advice or words of guidance would you wish to pass along to your... (son, daughter, spouse, family, etc.)?"
  • "Do you worry about being a burden to others?"
  • "What are your biggest concerns for the people you will leave behind?"
Chochinov H. Dignity and the essence of medicine: ABCD of dignity conserving care. BMJ 2007;335:184-187

Pallium Pocketbook

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Pallium Palliative Pocketbook

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What is it?

The Pallium Palliative Pocketbook is practical, peer-reviewed and fully-referenced and is intended to support safe, ethical, effective and accountable palliative clinical service interventions in various community-based settings of care, such as: home, hospice, community hospital, long term/continuing care, community cancer care, etc. Its compact size and easily accessible information make it ideal for family/non-specialist physicians, nurses, nursing and medical students, and medical residents.

The Pocketbook is designed to be used as "take away" practice support resource with other Pallium related professional education tools, including a companion decision-support for Learning Essential Approaches to Palliative and End-of-Life (LEAP) courseware.

How was it developed?

Pallium Canada uses a systematic development process for new educational and clinical decision support tools, informed by current available evidence and subject to pan-Canadian, semi-blind peer review (i.e., reviewers are known, but the principal author(s) is not able to link reviewers' individual feedback to the individual reviewer). This process is designed to increase the objectivity of the review process. Therefore, this book has undergone an extensive blinded peer review process with over 15 content experts from different disciplines contributing to the review and content process.

The 1st Edition (1st printing) was first written in 2006 and 2007. Dr. José Pereira (then co-lead of the Pallium Project and Associate Professor of Palliative Medicine at the University of Calgary) was the principal author and prepared the first draft. The first draft then underwent an extensive peer-review process by a national Canadian 'Editorial Advisory and Oversight Panel' comprising of eleven palliative care experts from different disciplines (see list below). This included an independent Pharmacy review. Each panel member received a draft manuscript with a confidential reviewer number assigned to said manuscript. All manuscripts were returned to the co-managing editors, who worked with the review data to compile a single manuscript incorporating substantive comments from all 12 reviewers. Dr. Pereira then reviewed the substantive feedback from the blind-review process on a line-by-line basis noting acceptance, rejection or modification as the specific circumstance warranted. The content of the final draft was then agreed upon through a consensus process involving the principal author and the panel. As a final step, each citation in the reference section was verified against the PubMed database or the original book source and formatted according to the International Committee of Medical Journal Editors Uniform Requirements for Manuscripts Submitted to Biomedical Journals.

Contents

  1. Principles of Palliative Care
  2. Advance Care Planning (ACP), Decision-Making and Ethics in Palliative Care
  3. Communication
  4. Estimating Life Expectancy
  5. Pain
  6. Respiratory Symptoms
  7. Delirium
  8. Gastrointestinal Problems
  9. Hematological Problems
  10. Metabolic, Electrolyte and Endocrine Problems
  11. Neurological Problems
  12. Psychological and Psychiatric Distress
  13. Total Suffering, Spirituality, Hope, Dignity and Spiritual Care
  14. Palliative Emergencies
  15. Non-Cancer: Select Issues
  16. Miscellaneous Problems
  17. Miscellaneous Interventions
  18. Palliative Sedation for Refractory Symptoms at the End-of-Life
  19. Last Days and Hours (Terminal Phase)
  20. Grief and Bereavement

Sample Pages

Pocketbook Chapter 1 Pocketbook Chapter 2 Pocketbook Chapter 3 Pocketbook Chapter 4 Pocketbook Chapter 5 Pocketbook Chapter 6 Pocketbook Chapter 7 Pocketbook Chapter 8 Pocketbook Chapter 9 Pocketbook Chapter 10 Pocketbook Chapter 11 Pocketbook Chapter 12 Pocketbook Chapter 13 Pocketbook Chapter 14 Pocketbook Chapter 15 Pocketbook Chapter 16 Pocketbook Chapter 17 Pocketbook Chapter 18 Pocketbook Chapter 19 Pocketbook Chapter 20

Advanced Care Planning

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Advance Care Planning (ACP)

What is ACP?

  • Two essential components
    • A reflection on values and wishes while we are still able to
    • Considering who will speak for you when you are no longer capable of making decisions about your own care (substitute decision maker)
  • Communicating with others about preferred health/personal care if you become incapable
  • Share wishes with family, SDM and health care providers
  • These reflections and discussions can result in an advance care plan (verbal, written, etc.)

Terms Used

  • "Substitute Decision Maker (SDM)" versus "POA" (various terms in different prov/terr)
  • Written instructional directives (Different terms used).
    • "Advance Care Plan"
    • "Advance Directive"
    • "Medical Directive"
    • "Instructional Directive"
    • Can only be activated when a person lacks capacity
  • "Power of Attorney"
    • Health
    • Finances
  • "Living Will"
    • an American term that does not have legal status in Canada and should not be used here

Advance Care Planning is NOT

  • One conversation about treatment options with a physician or other healthcare professional
  • Refusal of medical treatments - for example a "DNR"
  • A document or form
  • "Checklist type living wills"

What is the process of establishing an advance care plan?

ACP Process

Reviewing your wishes/plan regularly and continuing the conversations.

Adapted from CARENET's Model for Improving Communication about End-of-Life Care

Speak Up Website

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For:

  • Patients and families
  • Professionals
  • Community organizations / agencies / programs
  • Researchers

"Just Ask" Useful Phrases

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Questions to ask your patients:

  • "What do you understand about your illness or what's happening to you?"
  • "Do you have an advance care plan?"
  • "Do you know what I mean by these terms?"
  • "Have you talked to your SDM (or anyone else) about your wishes or preferences for health care decisions that may come up? May I ask what you discussed?"

When would one engage in Advance Care Planning?

It is not limited to when one is terminally ill. In fact, that is not the best time to initiate it. It should be done at the following opportunities:

  • At a routine annual physical when one has no serious medical conditions
  • In a general conversation over dinner with family members when no one has serious medical conditions
  • When a life threatening is diagnosed
  • When an incurable illness is found to be progressing despite treatments
  • When a serious illness is being controlled with treatments

LEAPing

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LEAP (Learning Essential Approaches to Palliative Care)

What is LEAP?

LEAP is interprofessional palliative and end-of-life care education nurtured by a pan-Canadian network of academic health leaders and skilled community-practitioners. Focusing on current best practices, LEAP provides a standardized, competency-based approach to enhancing palliative care services across Canada.

LEAP Guiding Principles:

  1. Promote interprofessional care
  2. Translate and diffuse knowledge
  3. Constructivist design to promote active learning
  4. Connect community to local palliative care resources
  5. Build palliative care capacity at generalist level through competency based education

LEAP Products

LEAP Core

LEAP Core Page

LEAP Mini

LEAP Mini Page

LEAP Onco

LEAP Onco Page

LEAP Paramedic

LEAP Paramedic Page

LEAP LTC

LEAP LTC Page

Taking Ownership

LEAP Taking Ownership Page

Coming Soon!

  • LEAP ED
  • LEAP Surgery
  • LEAP Hospital
  • LEAP Renal
  • LEAP Heart
  • LEAP Lung
  • LEAP Liver
  • LEAP Complex Continuing Care

LEAP Facilitators

LEAP Facilitator Training

400+ LEAP Facilitators trained since September 2014!

All Pallium Canada products are offered by experienced LEAP Facilitators.

LEAP Facilitators help Pallium Canada build capacity in palliative care by:

  • Educating front-line healthcare professionals
  • Solidifying local interprofessional healthcare teams
  • Standardizing competency-based training

Pallium Canada is offering training and certification for LEAP facilitators. Approved facilitators are licensed to use the LEAP courseware and all of Pallium Canada's learning resources. LEAP Facilitators receive unlimited access to:

  • Pallium Portal (Learning Management System)
  • Renewed, up-to-date content
  • E-learning and communication video resources
  • Repository of setting-based cases
  • Generated reports on your LEAP sessions

During LEAP facilitator training, participants learn to use the LEAP curriculum to address different learning styles. They are introduced to a number of facilitation strategies including:

  • Mind-mapping to address core theory
  • Small group work
  • Case-based discussions
  • Trigger tapes
  • Large group discussions
  • Role play
  • Call for Participants

Call for Participants - Facilitator Training

How to Register or Organize a LEAP Course

  • Go to the Search for a LEAP Course page in this app!
  • Visit www.pallium.ca and search its calendar of events for a course near you. Some courses are open to any registrant, while others are closed to employees or staff of the organization offering it.
  • Look out for local advertisements.
  • If there is no course near you and/or you wish to bring one to your team, facility or community, contact your local palliative care organization or service, or contact the Pallium Office at:

    info@pallium.ca or
    1-613-562-6262 ext 1784.

  • Participants and organizers have to register through the www.pallium.portal.ca

Resources

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Doodles & Videos

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Doodles & Videos

Better Early Than Late

Advance Care Planning

The Words We Use

Palliative Myths - Episide 1

Palliative Myths - Episide 2

Visit YouTube for more videos!

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Provincial Resources

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National Resources

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What is the Palliative Palliative Pocketbook (PPP)?

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What is the Palliative Palliative Pocketbook (PPP)?

The Pallium Palliative Pocketbook is a practical, peer-reviewed, fully-referenced resource that is intended to support safe, ethical, effective and accountable palliative clinical service. Its compact size and easily accessible information make it ideal for family/non-specialist physicians, nurses, nursing and medical students, and medical residents. It's available in a paperback and an e-book. Details on where you can get it are below.

Author: Pallium Canada

Where can I get it?

Get more information on our Website or on the Pallium Palliative Pocketbook section of the Pallium App

What is the Pallium Portal?

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What is the Pallium Portal?

The Pallium Portal is a Learning Management System that organizes and tracks learner and facilitator activity. The Pallium Portal is Pallium Canada's central hub for professional development and provides access to:

If you're interested in the Pallium Portal and want to learn more about it, visit the portal by clicking the button below.

View Portal

What are Pallium Doodles?

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What are Pallium Doodles?

Doodles are short 1 to 3 minute-long animated videos designed to educate the general public and healthcare professionals on a topic in an engaging way. Recent Doodles have highlighted the importance of Advance Care Planning, euphemisms surrounding the word "palliative", and palliative myths. You can access all of our Doodles for free on our YouTube Channel.

Visit our YouTube Channel

What are CCO Palliative Care Tools?

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What are CCO Palliative Care Tools?

Links to best-practice tools from around the world to support primary care providers in the delivery of palliative care.

Tools are organized according to the 3-step model of best practice proposed by the Gold Standards Framework (GSF): Identify, Assess, and Plan. This evidence-based approach has been adopted broadly across the United Kingdom. Work has also been done to adapt the GSF in British Columbia for an End of Life Care Module developed by the General Practice Services Committee. For resources tailored to support First Nations, Metis and Inuit families and communities, please see Tools for the Journey: Palliative Care in First Nations, Inuit and Metis Communities , a Resource Toolkit, developed by the Aboriginal Cancer Control Unit at Cancer Care Ontario

To view a detailed map of the standard of care and support that all cancer patients and their families should receive, please refer to the Psychosocial Oncology/Palliative Care Pathway (Cancer Care Ontario).

Source: CCO Website (https://www.cancercare.on.ca/toolbox/pallcaretools/)

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What is Life and Death Matters?

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What is Life and Death Matters?

Life and Death Matters is on a mission to develop and deliver resources to increase the capacity of the individual to provide excellent care for the dying and the bereaved.

A palliative approach can be integrated into care by all care providers in acute, emergency, long-term, and home care settings. A palliative approach does not need to be provided by specialists. The inclusion of a palliative approach across all settings means that all the dying, not just a minority of them, can benefit from the principles of hospice palliative care.

Since 2005 they have been developing and delivering palliative care education, resources and materials.From textbooks and workbooks to a complete podcast library and complimentary teaching resources, we strive to help students to learn, and instructors to teach, palliative care principles.

Source: Life and Death Matters Website (http://lifeanddeathmatters.ca/)

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What is Speak Up?

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What is Speak Up?

The Speak Up Campaign is part of a larger initiative "Advance Care Planning in Canada" and is overseen by a National Advance Care Planning Task Group comprised of individuals representing a spectrum of disciplines, including health care, law, ethics, research and national non-profit organizations.

Source: Advance Care Planning Project Overview (http://www.chpca.net/media/7437/acp_detailed_project_overview_sep_2_10.pdf)

Visit the Website

What is the CHPCA Marketplace?

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What is the CHPCA Marketplace?

The CHPCA Marketplace is a one-stop shop for hospice palliative care resource and information materials for health care providers, volunteers and family and informal care givers. It's an online marketplace where you can purchase palliative care resources and information materials.

Source: CHPCA Marketplace Website (http://market-marche.chpca.net/)

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What is Canadian Virtual Hospice?

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What is Canadian Virtual Hospice?

The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators.

Source: CVH Website (http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home+Navigation/About+Us.aspx)

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