One of my guilty pleasures is The Walking Dead. Based on a comic book, I actually discovered the TV show first, which is unusual for me.
The story chronicles a group of survivors of a zombie apocalypse in the not-too-distant future, led by Sheriff Rick Grimes, as they attempt to survive in this “new normal.” (Sound familiar?)
Although COVID-19 has been a worldwide tragedy closing in on a million deaths, at least we can be thankful that a zombie-reanimating virus is the thing of pure fiction.
What isn’t fiction is a healthcare zombie.
A healthcare zombie is a myth about something in healthcare that simply won’t die. I first came across the term in Dr. Danielle Martin’s book Better Now, in which she uses it to refer to issues such as user fees, a parallel private system for paying doctors and private financing.
I, too, suffer from healthcare zombies. And like real zombies, mine is proving hard to kill.
I refer to the persistent argument that we need to change the name of palliative care to “supportive care.” The argument is that palliative care is associated with death and dying and that for this reason, allegedly, access to high-quality palliative care remains poor. It has been suggested that patients and clinicians avoid using the term “palliative,” which in turn leads to patients not being referred to palliative care services in a timely fashion.
This argument, long felt to be settled, was raised again in a recent Washington Post article to my chagrin. So, like Rick Grimes, I must once again do battle with the walking dead.
The article starts by stating that “the very phrase ‘palliative care’ is frightening to many people with critical illness and that “a growing movement is advocating to rename palliative care.”
OK, let’s define palliative care.
Palliative care is a holistic approach to care for patients facing a life-limiting illness. It provides compassionate, patient-centred care that focuses on patients and their families. Palliative care has been shown to significantly improve a patient’s quality of life, decrease stress and burden on families and caregivers while, in some cases, actually increasing a patient’s survival. These benefits have been shown in both cancer and non-cancer patients.
Not so frightening.
Interestingly enough, like a shambolic zombie, the WaPo article actually debunks itself when it states “that over 70 per cent of respondents didn’t even know what palliative care was.” Further, the article goes on to clarify that “of those who were aware of palliative care, almost two-thirds think it is the same as hospice.”
Again, none of this has to do with its name. The study is actually highlighting a lack of education rather than an insurmountable stigma.
While the article aims to increase the “acceptability of palliative care for both patients and clinicians,” it fails to make a case that it is the name that is the actual barrier. The authors quote a study showing that a name change increases referrals and that 70 per cent of patients lack understanding of what palliative care is. However, they fail to mention that “95 per cent rated palliative care favourably after being prompted with a tested definition.” (Thanks to @DrJRubenstein for pointing that out)
The reasons for poor access to palliative in Canada are not rooted in nomenclature but rather in the priorities of our healthcare system. For decades, we have collectively valued cure over care, technology over compassion and innovation over simply “being present.” This is not to discount the former but it is telling that we have ignored the latter to our detriment.
The benefits of palliative care are undeniable, the evidence irrefutable. It provides better outcomes for patients while simultaneously cutting healthcare costs. It provides care in settings more appropriate for patients such as their homes or a hospice. While healthcare savings are not the goal of palliative care, I refer to this as a “beautiful side effect.” These savings can then be reinvested into other areas such as mental health, addiction, public health and preventative care. As such, palliative care contributes positively to the sustainability of our publicly funded healthcare system.
However, we know that in Canada too few patients are referred to palliative care and often too late. We also know that access to palliative care, while better in hospitals, is limited in the community setting.
The modern field of palliative care was not “made in Canada.” That honour goes to Dame Cicely Saunders in England. She founded St. Christopher’s Hospice in 1967 and with it the field of palliative care as we currently know it. The term “palliative care” was, however, coined here in Canada in 1975 by Dr. Balfour Mount, a surgeon in Montreal. He used the term so that it would be acceptable in both English and French as he brought the movement to Canada (from Latin palliare = to cloak or cover). He also created Canada’s first palliative care unit (PCU) and is widely recognized as the “father of palliative care in North America.”
Persistent calls to change the name of palliative care are both unlikely to have the desired effect and highly disrespectful to the history of this field and its founders. Increasing access to palliative care requires patient and clinician education as well as investment in human resources like well-trained doctors and nurses, not superficial name changes.
A better approach would be to enlighten Canadians about the benefits of palliative care, not only for them but their families and loved ones. While a rose by any other name is still a rose, changing the name of palliative care should not be a lazy substitute for the important work of educating patients, families, caregivers and clinicians alike.
So, let’s hope this is the last time I need to pull out my trusty six-shooter for this healthcare zombie. But if I do, maybe next time I should reach for the old barb-wired wrapped baseball bat I call her Cicely. Rest assured she’s ready and waiting for the argument to change the name of “palliative care.”