“My Strength Defines Me”: Living with a Life-Limiting Illness

In June 2016, Kim Coughlin went to the hospital for surgery to remove a benign brain tumour. At 45 years old, Kim led a busy and fulfilling life. She was a mother, wife, sister, employee, leader and friend. She was a bereaved parent, carrying the memory of her infant daughter in her heart always. Kim expected to be away from work for eight weeks. But after the surgery, Kim received a new diagnosis that would change her life.

“I knew something was wrong as soon as I woke up,” says Kim. Her husband Kevin and sister Liane were with her when she was diagnosed with glioblastoma, an aggressive form of brain cancer that is diagnosed in about 1,000 Canadians every year.

“Kevin and Liane really struggled with the diagnosis,” says Kim. “They felt helpless. At least when you’re the patient, you feel some level of control.”

Typically, glioblastoma is diagnosed in older adults, so Kim’s age was in her favour. As well, the surgeons had performed a successful resection of the tumour and Kim’s genetic markers looked promising. Kim underwent a year of chemotherapy and 30 radiation treatments, which eradicated 90 percent of the tumour.

Kim was pleased with the expert level of care provided by her neurosurgeon and oncology team, but she noticed a breakdown in communication between her specialists and her primary care team. At times, her family doctor seemed hesitant and uncertain about how to treat Kim’s symptoms and manage pain.

“My family doctor is a bit leery about treating some of my symptoms because she doesn’t know if they are related to glioblastoma or not,” says Kim. For example, last year, Kim went to her family doctor with an excruciating sore throat that was unrelated to glioblastoma. Her doctor sent her to the emergency room (ER), and the ER sent her home without a prescription for antibiotics. Kim’s symptoms worsened and she had to return to the ER. The next doctor on duty said Kim was extremely dehydrated and immediately put her on intravenous fluids and antibiotics. It took three trips to diagnose tonsillitis, something Kim chalks up to general practitioners’ hesitancy toward treating patients with life-limiting illnesses in the clinic or the ER.

“The reality is, some doctors don’t have the knowledge and skills to properly care for patients like me who are dealing with a life-threatening illness,” says Kim.

Learning Essential Approaches to Palliative Care (LEAP) training builds a greater sense of understanding between primary care and specialty teams, providing a common language about patients with life-limiting illnesses, as well as specific guidance on treating and managing symptoms, and prescribing pain medication. LEAP-trained health care providers are equipped to advise patients and their loved ones about the options available to them, which gives them hope about navigating life-limiting illness together.

Kim believes an important component of LEAP training is that it considers the emotional side of working with patients diagnosed with life-limiting illnesses.

Being aware of emotional needs enables primary care providers to deliver more empathetic care and to anticipate where their patients may need additional support.

“Physicians should take inventory of their patients with life-limiting illnesses and have agreements related to their specific needs,” says Kim. For example, every three to four months, Kim has a Magnetic Resonance Imaging (MRI) and waits at least one week for results. The waiting period is stressful, and often, Kim will make an agreement with her oncologist how she will get the results—either at a follow-up appointment, by email or by calling her general practitioner’s office. To reduce the stress of waiting for results, Kim’s former general practitioner—who is now retired—used to call immediately once she saw the results.

As well as providing essential support for patients, LEAP training also equips health care professionals to help the patients’ loved ones. Kim remembers undergoing treatment while navigating the advance care planning process with Kevin. “There was so much stress on top of all the treatment, and no support offered for Kevin, Liane or the kids,” says Kim. “That’s a big miss. I wish there was a program or course we could have taken as a family.”