Opinion

Palliative care training ‘woefully inadequate’ in meeting need

Leave a Comment

Your email address will not be published. Required fields are marked *

42 Comments
  • Jackie Dix says:

    Abby, is there any access to your report on the internet?

  • Jackie Dix says:

    thank you so much for this informative article Dr. Cargill. As a 70 year old woman here in Ontario, I lament how reluctant society is to demand better care around death and dying. Our local peer learning for seniors has embarked on a 10 week discussion group called “Let’s Talk about Death and Dying” just to initiate dialogue around this important aspect of living. Keep up the good work! And Western, shame on you!

  • Jane Vincent says:

    I wanted to let you know that I heard a broadcast on CBC Radio 1 on the 26th of December 2020. It was an interview with a doctor of palliative care and was probably pre-recorded so I have not been able to find her name but she touched so clearly on my own experience that I was shocked. She spoke about doctors in other specialties not being in tune with eminent death. My husband died from cancer and if it had not been of the nurses giving me subtle hints I would have been unable to cope with the speed with which he died. They had a meeting with me on a Monday about getting things ready for him to come home to finish out his life for six to nine months, which of course put me in a panic to get everything done to allow this to happen and he died the following day. The nurses knew what was coming and they were the ones to help me realize I needed to spend the next 24 hours with him in the hospital. The doctors are either unrealistic to end of life symptoms or just reluctant to admit to the families of those dying that palliative care is what is now needed. Those last few days could have been so much different for my husband if the doctors had stepped up to the plate.

  • Abby Maybee says:

    Hi Darren,

    As I said before (and you quoted above), there are just not enough palliative care specialists to go around. I certainly did not mean to insinuate that we CAN’T train enough specialists. I think we can all agree that we need more palliative care specialists. I fully support increasing our number of trainees. Thank you again for participating in my research project.

    Sincerely,

    Abby

    • Darren Cargill says:

      Thanks Abby.

      It was my pleasure to participate in your project. It provided a great springboard to have this conversation.

      Best wishes as you begin your career as a palliative doc!

      PS “triggered” was totally tongue in cheek

  • Julia Appleton says:

    I listened to the results of that research this morning. I would say palliative care is like ID. Every MD should have competencies common to their patient population, and consult PC for complexity. I think well educated Nurse Practitioners can and should be part of the solution.
    We are a very big country with variance in urban and rural settings. It would make sense to mobilize many providers, social work and chaplains too. This is a societal need not just medical.

    • Darren Cargill says:

      It is not either/or.

      We can do both. We simply seem to ignore the fact we need to train specialists too.

      And yes, have enjoy working with NPs in my career. All hands on deck.

  • Marissa Slaven says:

    I’ve been saying the same thing for years, well said!

  • Margaret A deMello says:

    Excellent article! We need a public and professional force behind quality of care issues in this country. How quickly health policy embraced hastening death (MAID) for terminally ill and elderly patients with no corresponding effort to expand pain management, community care, hospice, palliative and terminal care resources. If you do not think that is a dangerous situation, your head is in the sand.

    • Darren Colin Cargill says:

      Thanks Margaret.

      Professionally, many organizations have been pushing for increased access to palliative care including the CSPCP, OMA, CMA, OPCN, CHPCA, HPCO, just to name a few. Ultimately government will not respond unless the feel pressure from the public. This means patients, families and caregivers.

      Re: MAiD. Almost every other country in the world that has legalized MAiD also made concurrent investments in palliative care. Canada has not done this. While less than 1% of Canadians will avail themselves of MAiD, 100% could benefit from PC when facing a life-limiting illness.

      I don’t think anyone’s head is in the sand, I think government will listen if the public demand it.

      • Dr. Ron Posno says:

        Thanks, Darren for raising this issue. Covid 19 has affirmed our need for better elder care with respect to facilities and staffing. PSWs should not be considered as mere ‘bottom’ washers, and as it has been pointed out, much of their training should be shared with nurses and physicians. PSWs are key to better care and their remuneration should reflect their roled and responsibilities.

        Medical Assistance in Dying(MAiD) is not ‘pushed’ by any government and should be considered as one of the options of palliative care. Some people really come to the ‘end’ of living and want an easy, dignified death.

      • Darren Colin Cargill says:

        Thanks Dr. Posno.

        Can’t agree more. PSWs are part of the team.

        I have not seen MAiD “pushed” (nor did I claim it was) however I do worry that a lack of access to palliative care may lead patients and families to decisions they would not otherwise make. My perfect world has universal access to palliative care for all patients with a life-limiting illness but also with MAiD available for those who have irremediable suffering. I still see them as separate entities but that they work and collaborate together to put the patient at the center.

        I do, however, feel that “dying with dignity” has been co-opted unfairly by MAiD and supporters for medical aid in dying, now that it is legal, should actively discourage associating DwD with just MAiD. Dying with dignity should be the goal for all patients, not just those who seek MAiD.

        Thanks for the comments.

      • Dr. Ron Posno says:

        Thanks, Darren. I’m sure we’re on the same team … and I really appreciate and support your attempt to clarify a larger and more definitive role for “Dying With Dignity Canada.’ They (it) should be much more than MAiD supporters. There are many who don’t need nor desire MAiD and instead, prefer a supported dignified death.

        Ron Posno

  • Margaret A. Kennedy says:

    A book for those wanting to know some reasons for the lack of gerontologists / palliative care specialists could read the book
    Elderhood
    by
    Aronson, Louise
    An interesting book for the layperson interested in this problem.

  • Margaret A. Kennedy says:

    We must train more Palliative Care specialists. We have an abysmal record on this. We also need to train many more Gerontologists who can handle the special needs of our ever growing senior sector. Neither of these fields get any real training in our medical schools.
    Those who would train as Gerontologists would probably take advanced palliative care courses. Specialized care for seniors and the dying are an absolute necessity in our current society.

  • Sandy Buchman says:

    Great article Darren – thanks for continuing to be such a strong advocate for more palliative care training for both undergrad and postgrad medical programs. So to try to answer your final question “So, why aren’t we doing this?” I would venture 2 important reasons:

    1) Because it’s palliative care and because it’s about death and dying. Full stop. We need to face up to this fact. Canadian society hasn’t yet reached the point of recognizing death and dying as a normative phase of life. Just last week, when the new hospice I am helping to create in Toronto was at Committee of Adjustment, the NIMBYism was profound – and mostly because of the presence of a facility in a residential neighbourhood associated with death and dying was feared to lower property values and interfere with normal life activities. But the real feeling goes much deeper. So as the profession of medicine is part of overall Canadian society – we will be challenged until this basic fear is gone. That is an important area in which to build our advocacy – like through the Compassionate Community initiative which normalizes dying and death and palliative care as a public health issue.
    2) Palliative care training is also part of the much bigger picture of Health Human Resource planning. It is hard to believe, but Canada does not have any national health human resource plan. We have no idea how many physicians to train, in which specialties, the ratio of Family Physicians to other specialties etc. And there is no national plan for any other health profession – from nursing to pharmacy to social work etc. There is no consideration how innovative models of inter-professional care can impact the number of physicians and other professionals needing to be trained. There is no consideration of meeting society’s healthcare needs…no social accountability – e.g. we have 10 x the number of paediatricians being trained as compared to geriatricians. And what does our rapidly aging society need? Geriatricians, family physicians and palliative care physicians of course. And I haven’t even mentioned poor rural and remote access and lack of care of more vulnerable populations everywhere.

    Canada’s medical training programs are province and university program specific. The loudest and most established advocates get the trainees. So palliative care has to compete at the present time while facing the cultural challenges we do. But the real answer is at a much higher level too – training physicians (and others) to meet society’s healthcare needs. Let’s all become more socially accountable to Canadians.

    • Darren Colin Cargill says:

      “Because it’s palliative care and because it’s about death and dying. Full stop. We need to face up to this fact.”

      I think you may have just spoiled my next HD article, lol :)

    • Margaret A. Kennedy says:

      Wonderful analysis.
      The response of NIMBY to building a hospice is absolute astounding.

      • Darren Colin Cargill says:

        Agree Margaret.

        Hospices are fantastic facilities. Any community would be lucky to have one.

        John Fraser included hospices in his 2016 roundtable report. Using them as “community hubs” is a great idea, imho.

  • DM Connors says:

    Excellent article! Thank you. Let’s get moving.

  • Kathy kastner says:

    Darren, Thanks for this excellent and provocative article. As a self-described ‘Palliative Care Evangelist’ I think the palliative philosophy and approach should be the Standard of Care, I heartily agree that ensuring all healthcare professionals have Palliative Care training would indeed be ideal. While I am much encouraged by the (faster than usual in healthcare) move to make Palliative its own specialty, I respectfully disagree that a bottom-up push, ‘ask patients/fams what they want’ and expecting ‘palliative care’ to be the answer: many are still fearful of or misconstrue the term. As for PSWs – those essential front-liners – who are indeed perfectly positioned in patients/families lives – I submit they should be better paid and better protected when taking on palliative training and palliative roles.

    • Darren Colin Cargill says:

      Thanks Kathy.

      Always appreciate your insights.

      The “bottom up” push has more to do with who should be doing/providing palliative care. There is a belief that family doctors/generalists should be doing all the primary level palliative care and specialists should only do complex cases (secondary or tertiary level) while mentoring and coaching primary level providers.

      My experience, including many of my colleagues, is that patients and families often request a palliative physician because they know symptom management and EOLC is our expertise. It is literally what we do all day, every day.

      I am NOT saying that family doctors can’t or shouldn’t do palliative care. I support primary level capacity and generalists. What I am expressing is that many patients and families request a specialist. Do we acknowledge that or do we paternalistically tell them that we know what’s best? That was my point.

      No argument re: PSWs. Hard work for poor pay. Needs to change.

  • Linda Latcham says:

    I believe the root of many issues in our healthcare stem from the education facilities that train(or so not train doctors). This is just one example of the antiquated medical system we have here in Canada that starts with training. There are too many politics and economics involved in medicine. When medicine decides to put patients and their care first, then we will have a system that we can depend on from cradle to grave. What concerns me is that the people paying for this care(ie, the taxpayers), are not receiving the level of care they deserve, especially when they need it the most. Until doctors, on mass, start advocating for a better system and putting the patient care ahead of their big earnings, nothing will change. It is just one big political system, with a bunch of politicians looking after their interests first. Shameful

    • Darren Colin Cargill says:

      Thanks Linda.

      I agree unfortunately about the politics. But it is also an issue of priorities. Palliative care has always been viewed as something you could learn on the fly after you graduate or that (even worse) end of life care just didn’t matter as much as curative treatments or chronic disease management.

      When we talk about “cradle to grave,” why is it that we ignore the “grave” part? Dying is a natural part of living. Saunders recognized this decades ago.

  • Joan Eaglesham says:

    Right on, Dr. Cargill! Love the reference to the Onion’s take on the inevitability of violence, too.

  • Janis B says:

    Loved the idea of supporting PSW’s, many who have taken the 40 hr Palliative care training. When my mother was a actively dying, needed to see her family doctor, the office asked if she couldn’t just come into the office!! No understanding of Palliative care. Doctors could benefit from a mandatory reading list of books on death and dying. Even watch a movie specially designed around death and the fears that both family and individual are facing. Spending a 24 hr stint at a residential hospice to see what Palliative care is in the real world . The one take away is a physician needs to learn about pain management and how to properly prescribe standing orders so families and helpers(nurses or PSW’s) can manage the individual ‘s pain. Doctors cannot heal at end of life.

    • Darren Colin Cargill says:

      Thanks Janis.

      Sorry to hear about your experience with PC. Prior to COVID, all of our physicians did home visits. Now with virtual care, we offer patients their choice of home visit, VC or telephone contact. We hope to add email and text messaging in the future (currently not funded by OHIP).

      The CMAJ article is one of the most important. Most physicians graduate with little or no training in palliative care, which includes pain management.

      In terms of books, I would recommend (in no particular order):

      Being Mortal by Atul Gawande
      When Breath become Air by Paul and Lucy Kalanithi
      Talking about Death won’t Kill you by Kathy Kortes-Miller
      With the End in Mind by Kathryn Mannix

  • Franklin Warsh says:

    Darren,

    Great article. I agree the most sensible approach would be to firm up palliative care competencies as part of Family Medicine certification, and add mandatory exposure to the field. It would be nice to see it tried with students too, but there’s just too much going on in med school and too many med students are destined for “action” specialties to make it a smart investment of resources for now.

    As I’ve understood from you (and correct me if I’m wrong), there’s now a push to make palliative care a Royal College specialty. Is there a worry that will make the expertise shortage worse? This isn’t to diminish the the specialized knowledge at all. But credentials creep has been a growing problem everywhere in medicine, and palliative care is one of those fields that might not appeal to a new grad. Rather, it’s one of those areas of medicine many of us don’t appreciate without a little more experience under our belts. Maybe I only speak for myself here, but I didn’t get much out of an elective in palliative care as a resident, despite really wanting to. I didn’t learn to like the field until I was able to provide the care for my own patients and families.

    Then again, anything I suppose is better than the current Ned-Flanders’-parents, “we’ve tried nothing and we’re all out of ideas” approach.

    • Darren Colin Cargill says:

      Thanks Frank.

      Well, push came to shove and Palliative Medicine is now a Royal College subspecialty. I passed “the trials” in 2019 and am now a double boarded geek, or just a nerd, one or the other.

      As for med students, we have a very successful program here where we had them volunteer and do night vigils to expose them to palliative care. If I had the time, I would love to see if revived. I think it spurred the interest in our PGY3 program, which has directly lead to our HHR explosion here in Windsor. We went from one deeply burned out doctor to 10 FT palliative physicians (and growing).

      One thing I will say about your experience with PC, not every rotation is created equal. But you are, after all, a certified curmudgeon so it is no surprise you weren’t drawn to it. You probably had a “sad hands” preceptor. All of our physicians are under 50. I’m the oldest at 45. Most are relative new grads, under 40.

  • Brenda Bonnell-Goss says:

    What if PSW’s who are trained specialists in palliative care partner with our Ontario Physicians and Surgeons and get paid appropriately for our knowledge and service and lets all advance medicine and the systems of 2020. :).

    • Darren Colin Cargill says:

      I have nothing but great experiences with PSWs, they are an essential service in PC. eShift has been invaluable to my patients and their families.

  • Darren Cargill says:

    Look forward to your questions, comments and gratuitous insults :)

    • Darren Cargill says:

      Ok, I seem to have found a way to silence the Interweb ;)

      • Brenda Bonnell-Goss says:

        Not silence, folks don’t usually know how to approach a Dr. Authoritarian fear. Anyway, loved the article, wonderful incite. 2nd year BSCN at 52…year ole female….answering you. :)

      • Darren Colin Cargill says:

        Thanks Brenda.

        I’m very approachable. I’m like a small Cherub :)

        Good luck with school!

Author

Darren Cargill

Contributor

Dr. Darren Cargill is a fellow of the College of Family Physicians of Canada, the Royal College of Physicians of Canada, and American Association of Hospice Palliative Medicine. He is the medical director for the Hospice of Windsor and Essex County and lead physician for its community-based Palliative Medicine Program. He is one of only two certified hospice medical directors in Canada and has his designation as a certified Canadian physician executive. He serves on the board executive of the Canadian Society of Palliative Care Physicians (CSPCP).

Republish this article

Republish this article on your website under the creative commons licence.

Learn more