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.”
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I have been a volunteer at our hospice since the doors opened. I have told all family and friend contacts about the special care given to the person in care but also how wonderful and supportive it is for the families.
Thanks Marian.
This is how change happens. By sharing stories.
I agree with the drugging comment. Sat with my neighbour who took 3 weeks to die of hypoxia while starved and dehydrated in the local hospital palliative care wing. She was lucid at home and never again after that. It affected me so much, PTSD, that I will immediately choose MAiD at the earliest possible stage of whatever I qualify for and that would include Alzheimer’s. I would never want so-called palliative care.
Palliative care is nothing but drugging the patient and keeping them tied in in bed..no compassion like l remember
My aunt and now my mother receive(d) palliative care. Unless you have experienced the compassion and the overall idea of caring for an individual when on the end of their life journey you Judy don’t know. There is no drugging or tying down. Where in earth would you have such a conception?
Thanks Mallie.
Unfortunately, people may mistake an absense of high quality palliative care for “actual” palliative care.
This is also an example of why we need better access to palliative care, particulary at EOL. Family and caregivers who witness a “bad death” are traumatized and carry that trauma forward.
Thanks Kathy.
I’m sorry to hear that, clearly you have had a bad experience. I would suggest what you witnessed was not palliative care but a lack of palliative care.
Appreciate your thoughtful essay! Great comments and discussion too.
I think we can all acknowledge that palliative care principles, or a palliative care approach, i.e. good communication and symptom management, should be incorporated in the care of anyone with a life-limiting illness (and if I could have my way, this is an approach that should be part of all patient care!); what needs to be added is that this approach should be part of any practitioner’s practice when working with a patient with any life-limiting illness, and that only the more complex situations should require the expertise of a palliative care consultant. It boils down to education of the public and healthcare providers about what palliative care can do for the patient, and empowering healthcare providers to incorporate palliative care principles in their practice, and as you say, not a cosmetic change in name.
Thanks Ingrid.
Two sides to your argument. While we can hope for a future state that includes all health care providers having basic competencies in palliative care and reserving the “experts” for complex cases, this is a “provider-centric” view. What if patients or families want to see a palliative care specialist or have that specialist act as their primary provider for care? This would be a “patient-centered” approach.
I am aware of areas where most of the PC is done by focused practice FPs and specialists. In other areas it is done by primary care (FP and/or NP) with specialist consultation. Both work. Whatever gives patients access is the right answer.
I agree with your point of view. It seems that all the discussion about palliative care is coming from the medical profession. No one, it seems, has asked for feedback from the public. Why are patients vehemently recoiling when palliative is mentioned?
I will tell you why I would have reacted negatively before getting involved with Advance Care Planning and learning that palliative is not just for those near death.
My only experience with the word palliative was that there is/was a palliative floor (16, I believe) at Vancouver General Hospital. Any patients transferred (after having been assessed & approved for transfer, meaning death was near) to that floor and their families suddenly found themselves in another world, far from whatever floor they had been residing in that hospital. The rooms were peaceful, there was space for family and family was welcome 24/7. The patient was carefully, frequently monitored and kept comfortable. And yes, except for one case I knew about where the patient actually returned home, most patients died. After the “horror” of being on another floor in the hospital where it was noisy and it seemed nurses were scarce and no one seemed to know what what going to be done, when, patients lucky enough to make it to the palliative floor, finally were gently cared for until death. And their families were too.
To be blunt, I learned that any patient who transferred to the palliative floor was expected to die. No one ever explained that palliative care could be provided in many other situations, in conjunction with other treatments, short term or long term, without the expectation of expected death within a short time from whatever illness or post op recovery the patient was dealing with.
That is what needs to be happening. All doctors need to buy into and learn how to apply palliative care to treating their patients. Not just “palliative” doctors or teams. Not just in hospitals or hospices. Yes, palliative care and hospice is good. Now let’s automatically assess every ailing patient for comfort along with treatment. There doesn’t have to be a name change, there does have to be a concerted effort to show by doing throughout medicine that palliative care is comfort care.
Thanks for sharing your experience Helen. You make good points about the misconceptions and need for education.
Also this piece from the American Society of Clinical Oncology news section may be of interest:
“What Is the Difference Between Supportive and Palliative Care?”
“Conclusion – The fields of “supportive care” and “palliative care” in oncology emerged from separate patient needs, have evolved, and are now intertwined. Supportive care arose specifically to combat toxicities of cancer treatment. Palliative care, which has historic roots in end-of-life and hospice care, has now established itself as a medical specialty dedicated to helping patients with serious illness live as well as possible. Abundant data now demonstrate that palliative/supportive care is beneficial to patients and their families and should be incorporated into cancer care.
The similarities and goals of supportive and palliative care far outweigh their distinctions. The term used to describe this type of care is less important than the benefit it provides to patients with cancer and their families. If it takes changing the name from “palliative care” to “supportive care,” so be it. What is most critical is that we ensure that every patient has access to this important additional layer of support.”
Source: https://dailynews.ascopubs.org/do/10.1200/ADN.19.190354/full/
Thanks Michael.
“If it takes changing the name from palliative to supportive, so be it.”
I think what I am arguing here is:
a) name change won’t accomplish what we need to
b) there is danger is not being able to define a field of medicine
https://globalpalliativecare.wordpress.com/2019/01/04/the-stakes-of-not-endorsing-the-new-iahpc-consensus-based-definition-of-palliative-care/
This article by Eduardo Bruera highlights the dangers of not being able to define what is (and importantly what is not) palliative care. Given the fact that the scope of palliative care continues to evolve, the risk is that government and policy makers can’t fund a moving target that is constantly changing its very nature.
A name change, especially one that is seen as unnecessary by the majority of those involved, just further muddies the waters.
Palliative care needs a name and congrete defintion so government and policy makers can understand what it is and how best to fund it so we can ensure universal access.
I will read that article by Bruera. You make an excellent point IMHO that government and policy makes aren’t so comfortable with a moving target that implies elusiveness. Completely agree. Sort of reminds me of the psychiatric diagnosis I have been given, mistakingly I believe but that is another discussion, by neurologists/psychiatrists of “Conversion Disorder/Functional Neurological Symptom Disorder” that is not well defined from a pathophysiological perspective and hence, one reason at least, funding for treatment for this condition in Ontario is not readily available.
Interesting in searching Medine (Pubmed), the bibliographic database from the US National Library of Medicine that indexes thousands of biomedical journals in the health sciences, the official medical heading of Palliative Care, see link below, has entry terms which can also be used to search as a medical heading for Palliative Care — 1. Palliative Supportive Care and 2. Supportive Care, Palliative
https://www.ncbi.nlm.nih.gov/mesh/68010166
Totally agree with your comments. We need to be educating the public about palliative care and the benefits. We need look no further than the trauma inflicted on individuals and families as we have floundered through Covid 19 – individuals dying without families present or able to visit; impact on the grieving process for family members who were not allowed to visit. We all die. Why have we not adopted the caring compassionate services that palliative care can be…why is it not available to everyone or as we have seen recently referred to hospice services with less than 28 days….Healthcare is care and we need to remember that it includes compassionate care.
Thanks Theresa.
Educating the public is a priority. Like study showed, 95% had a positive impression of PC when given a short description of what palliative care is. If the public demands it, the resources will be made available for earlier involvement.
Excellent essay, Dr Cargill. I appreciate your clarity and conviction, as in all your writing.
I agree with you (BTW, I am a gastroenterologist). I do not think that the Washington Post article, nor the study to which they refer from Texas (published in 2011, with some Canadian input) would be a reason to change the name of the specialty. In particular, in Canada, with limited resources, I think it is an ongoing, and generally successful, plan to educate family doctors, specialists, and the public, to understand the potential for a palliative care referral to help our patients. I prefer, perhaps naively, to think of palliative care as experts, with limited human resources, to be called for somewhat difficult cases, and “supportive care” to be more reflective of that which all doctors should be able to provide.
The palliative care consultations that I have witnessed are long, detailed, meticulous, and thorough, and often the most outstanding review of all the clinical, psychosocial, and family issues.
We need to be cognizant in Canada of the shortage of palliative care resources, like many other specialties. Earlier referral is probably a reasonable goal, but we need to look at the resources, and not overwhelm our colleagues.
Concerning the comment about dementia, I believe that most patients identified with dementia have more than 6 months to live (which may not be an important number for the definition of palliative care). Many live for several, or even many, years, and the need, related to those patients, is more for supportive care for their families and caregivers.
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Thanks Eoin.
I agree with you about being experts and having limited resources. I wrote about our HHR problem previously in Healthy Debate.
http://healthydebate.ca/opinions/palliative-training-inadequate-in-meeting-need
Resources are scarce in palliative care because there has never been a priority to expand or invest in them. Palliative medicine was not recognized as a specialty until 2014 and the first RC exams were written in 2019.
Thanks for the compliments, palliative medicine prides itself on being a valuable member of a patient’s team!
Thank you for your helpful article Dr. Cargill. I wish the people with dementia that I work with had access to palliative care. Often it is the palliative care practitioners who don’t want to work with this population. For some reason, people with dementia are not seen to need palliative care. This applies to people living in long term care as well, many of whom die within 2 years of admission, often after being sent to the hospital for uncomfortable and expensive and futile testing. Why is it so difficult for clinicians to have ongoing goals of care discussions, which include the likely trajectory of this life-limiting and life-altering diagnosis?
Thanks Cindy. Access for non-cancer diagnoses remains a challenge with dementia being the poster child.
Communication is a key yet basic competency in palliative care. Unfortnately, most clinicians are graduating without those basic PC competencies.
We can, and should, address these basic compentencies through better undergraduate, postgraduate and continuing medical education, as well as in schools of nursing, social work and allied health.
Looking forward to your questions, comments and gratuitous insults.
Does anyone have believe that changing the name from “palliative” to “supportive” will increase access?
Dr Cargill, your article truly deserve commendable. Changing the name doesn’t increase access as supportive medicine are prescribed alongwith the pain management medicine. Besides patient centred palliative care support the family members specially caregivers to boost mental power, mitigating total pain physical emotional social and spiritual. A great support in palliative care makes the patients and families to get rid of mental, social stigma of isolation or loneliness. Palliative care treats the person not the disease.