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Palliative vs. supportive: The zombie argument that refuses to die

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22 Comments
  • Marian Quenneville says:

    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.

  • Vera-D. says:

    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.

  • Kathy M Johnston says:

    Palliative care is nothing but drugging the patient and keeping them tied in in bed..no compassion like l remember

    • Mallie ellis says:

      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?

      • Darren Colin Cargill says:

        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.

    • Darren Colin Cargill says:

      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.

  • Ingrid de Kock says:

    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.

    • Darren Colin Cargill says:

      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.

    • Helen Aqua says:

      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.

      • Darren Colin Cargill says:

        Thanks for sharing your experience Helen. You make good points about the misconceptions and need for education.

  • Michael Fraumeni says:

    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/

    • Darren Colin Cargill says:

      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.

      • Michael Fraumeni says:

        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.

  • Michael Fraumeni says:

    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

  • Theresa Greer says:

    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.

    • Darren Colin Cargill says:

      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.

  • Eoin Lalor says:

    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.

    .

    • Darren Colin Cargill says:

      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!

  • Cindy Doucette says:

    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?

    • Darren Colin Cargill says:

      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.

  • Darren Cargill says:

    Looking forward to your questions, comments and gratuitous insults.

    Does anyone have believe that changing the name from “palliative” to “supportive” will increase access?

    • Pranab Basu says:

      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.

Author

Darren Cargill

Contributor

Darren Cargill, MD FCFP (PC) FRCPC HMDC CCPE Medical Director, Hospice of Windsor and Essex County Inc., Adjunct Professor, Western University. Past Chair, OMA Section of Palliative Medicine.