Supportive Care…Supportive Oncology…The Comfort Team…The Butterfly Team (as may be heard in pediatrics)…
Why is there so much resistance to the use of the “P” word – palliative? The truth is, palliative care might not be what many people think it is.
Language provides us with a tapestry of tools for communication and understanding. In palliative care, the use of poetic license is certainly no less than in any other fields of medicine. However, the words we use can be confusing. As an example of this, there are several reasons commonly cited for the often observed disconnect between patient wishes and the care they actually receive. These include fragmentation in the health care system and poor coordination between care providers. However, one of the biggest factors may be our cultural reluctance to talk about death, or to use the “P” word.
The history of palliative care itself demonstrates the importance of words and meaning. In the 1800s, with comparatively little in the way of curative treatments to offer patients, physicians who could offer comfort or pain management with Morphine or aspirin at the death bed of a patient were a welcomed sight. However, consider that it was not until Balfour Mount in the 1970s that the term palliative care was created. Prior to this time, there was no name for physicians who provided care to dying patients. Without a name for the field, there was less in the way of its advancement in terms of training, research and recognition.
Nearly 40 years later, the field is deepening and maturing. However, a reluctance to talk about death and dying remains very real for many people. We live in a death denying and death defying society. We use euphemisms, such as “passed away,” “expired,” and “in a better place” to talk about someone’s death. Many people fear the process of dying, as well as the unknown of death itself. In fact, some people often perceive “palliative” as a euphemism for death and dying. The unfortunate result of this is that too few people get the type of care they require until it is much later in their illness trajectory.
What is different about palliative care is that it is not just about treating patients in terms of their physical conditions and ailments, but addressing them in the context of who they are, their families, and what their goals of care are. For some, those goals may be the concurrent pursuit of curative treatment, and in others it may be the control and management of progressive symptoms.
In all cases, palliative care is active care. It is about having the best quality of life possible given an individual’s circumstances. It gives an opportunity for patients to plan the type of care they would like to have throughout the course of their illness. That being said, it of course also encompasses dying and end-of-life care. It is important to talk about death and dying, to make our wishes known and to discuss what measures we would want implemented to make death as comfortable as possible. It is through having these conversations that we can begin to reduce the stigma around the “P” word.
This is not just an issue for patients and families, though. Many health care providers also have a hard time with the word “palliative.” Many patients don’t actually know what palliative care entails. Often bringing up the term palliative can spark much needed conversations and feed into questions about prognosis, which many may not be comfortable discussing. Instead of using the term “palliative,” some HCPs prefer to describe it as an “extra layer of care or support for those facing a life threatening illness.” Though resistance to the term is rapidly and significantly abating, many patients and health care providers alike consider the field of palliative care to have a branding problem, which may well be true. Many patients, caregivers and health care providers do automatically associate palliative care with death. However, it is likely that if the name were to be changed to something else, for instance the “Supportive Care” or “Comfort Team,” those words would soon similarly become a euphemism for death and take on the same connotations. Perhaps what is most important is that patients get the kind of care they need when they need it. It is important for us to continue to educate and use the “P” word, but also find other ways of introducing it to those who are afraid of the word but would benefit from the care.
Written by: Gordon Giddings, MD