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Why Not Palliative Care? Some thoughts on resistance…

20:58 EST 8 Nov 2019 | GRACE
Stephanie Harman, MD, GRACE Faculty
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I consider GRACErs a very enlightened bunch regarding of palliative care, but outside of GRACE, there remains a lot of resistance to palliative care amongst patients, families, and oncologists (medical, surgical, radiation). Why? Why do people resist even the discussion of palliative care, even in the absence of end-of-life issues?

Before I launch into further comments, a brief disclaimer: not all of this is evidence-based, but based on experience and what patients tell me when I ask them. I will also say that there are two major areas to discuss here-palliative care as a new specialty, and the difficult conversations we face when things don’t go as we wish.

The Docs

Physicians are major contributors to the resistance in two major ways: 1. misperceptions of palliative care, and 2. reluctance to have the difficult conversations. On the subject of misperceptions, physicians think of palliative care as only for patients at the end of their lives, or only when all anti-cancer treatments have been exhausted. This deprives patients and their families of services that could help them at any point in the course of their disease and places the onus on patients and families to hear about palliative care. There has been a some research to confirm this. Most recently, the Center to Advance Palliative Care hired a polling company to do a “consumer report” on palliative care . During the course of this report, they polled physicians on their understanding, and what do you know-they thought palliative care was only for patients at the end of life and that is the only time they refer. In a study by Keating and colleagues of over 4000 physicians who care for patients with cancer, 65% said that they would discuss prognosis if they saw a patient with a 4-6 month prognosis and only 26% would discuss (not recommend) hospice. Interestingly, while cancer specialists (medical, surgical, radiation oncologists) were more likely to discuss prognosis, non-cancer specialists were more likely to discuss DNR, hospice, and site of death (where a patient preferred to die).

The reluctance to have difficult conversations when treatments aren’t working is a more complex issue, I think. On a very basic level, who wants to have difficult conversations? Many avoid these conversations as much as possible. We all get that “feeling” in our stomachs when we have to do something stressful-nausea combined with heartburn combined with butterflies. The stakes are high, and it’s very emotional for all. Multiple studies have demonstrated that there is only minimal training in these communication skills during the formal years (medical school, residency). A mentor of mine in palliative care would say to me, “Competence is a great stress reliever.” Physicians, just like most human beings, tend to avoid things that they aren’t good at. Better education on this topic and these skills would help. Just think, business school students get all sorts of classes on negotiations and tough conversations to prep them for the hard conversations, like when they have to fire someone, or when they have to tell their board of directors the venture failed. Why not have more rigorous education for physicians-in-training who will be having conversations about prognosis and dying. I’ll also say that discussions like these do take time, and sometimes it is just faster and easier not to talk about such hard topics. Unfortunately, procrastination is not suitable for patient care, especially for patients who have serious illnesses.

What Patients Say

Similar to physicians, there is a lack of understanding of what palliative care is. Most people think it is for patients on hospice. CAPC’s report revealed that of 800 random adults surveyed, 70% were not at all knowledgeable of palliative care. I get that question all the time: What is palliative care? Is it rehab? Is it hospice? That same report also revealed that once the participants were educated about palliative care, 95% agreed that it is important for patients and families with serious illness be informed about palliative care. 92% said that they would be likely to consider palliative care for a loved one if they had a serious illness and that it should be made available at all hospitals. Basically, when most folks here about palliative care, they think it’s a good thing to have. We all need to continue to educate the public and each other about palliative care.

Things become more complicated when we look at why patients resist discussing care that is solely palliative, i.e. when cure is not achievable and anti-cancer treatments are no longer effective. To pull back the curtain on what I do, physicians often call on our palliative care service to help facilitate these tough discussions when communication is not going well. Ultimately, I still think that most of the heavy lifting in having needs to come from the physicians-studies have shown that patients are interested in speaking with their physicians about advance care planning (who is the patient’s surrogate decision-maker, what to do when treatments don’t work, how they want to spend their time if prognosis is limited, etc), but won’t bring it up first. This should be something physicians bring up as part of comprehensive patient care. For those times when more treatment is not necessarily better care, patients tell me it is very difficult not to “do something” at the cancer, even if they are told it will not work. This makes sense, but as in all fields of medicine, we have found that sometimes, less is more-that better outcomes don’t always come from more drugs, more procedures.

The question of hope comes up a lot in these discussions. Hope is a complex thing, not just one-dimensional. Hope doesn’t exist only when there is treatment going on, but I think many view it this way and fiercely adhere to that view. And of course, the hope for cure, for long life, is an important hope, but the inter-workings of human emotion and psyche go beyond that. There are often lots of different hopes (hopes for being pain-free, hopes for spending time with family, hopes for not having to hang out so much in a hospital, etc). Chris Feudtner, a pediatrician and medical ethicist, wrote a moving perspectives article in the New England Journal of Medicine a few years ago that I have found helpful, basically urging us all not to underestimate or limit what hope exists.

The Hard Part of Palliative Care

I can tell you that in these tough circumstances when the treatment doesn’t go how we want, when the diagnoses are devastating, we all have the same prelude to everything we do: “I wish that things were different…” That being said, palliative care is there for patients, families and clinicians as we face tough times.

14 Responses to Why Not Palliative Care? Some thoughts on resistance…

  • Laya D. says:

    Thank you, Dr. Harman.

  • DianaJ says:

    Dr. Herman: Your paragraph about hope is so relevant and beautifully worded. Diana

  • kej says:

    Dr Harman
    My thoughts about this are that I simply cannot have two agendas simultaneously regarding my husband’s situation. It drains my resources having to think ahead and be prepared to assist treating his disease and be there for him where he is at any given time.
    Should I at the same time engage in giving in (because noone has yet succeeded in selling me palliative care as anything but giving in at the same time as feeling as comfortable as can be) then it would by far exceed my capacity.
    I need to focus at his treatments now, and I will deal with the palliative care later, when that time might come.

  • Dr Harman says:

    Laya, you’re welcome!

    kej,
    I think what you are saying makes sense, and I appreciate your candor. It is difficult to think of all the different things you face all at the same time. I do think the “giving in” version of palliative care is what most folks think of it. I would say that palliative care goes beyond just “end of life,” but also includes good symptom management and support for patients who have tough illnesses and their families. Sometimes, pain management while they are undergoing chemotherapy is what palliative care means for a particular patient.

    It may not be that one has to shift focus to think ahead, but just to have a discussion along the way re: planning for the future and treatment goals.

  • DianaJ says:

    Dr. Harman….sorry about my typo of your name on earlier post.

  • Dr Harman says:

    Thanks, Diana!

  • Laya D. says:

    Maybe what we neeed is a really good comprehensive definition of “palliative care.”

    Laya

  • Dr Harman says:

    Good suggestion, Laya. Here’s what the CAPC report used:
    “Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis.
    The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care
    is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”

    I tell folks that palliative care provides support for patients and families dealing with a serious illness–we’re an additional resource. Dr. Ramchandran did a post on what is palliative care (http://cancergrace.org/cancer-treatments/2011/03/28/is-palliative-care-right-for-you/).

  • certain spring says:

    Thank you for writing about this, Dr Harman. Because of my dx, it was made clear from the start that all my treatments would be palliative. The doctor said, ‘We can give you chemotherapy and radiotherapy, but we can’t make it go away’. On the point about resistance, the UK has a system of specialist community cancer nurses (“Macmillan nurses”). I was very reluctant to meet them because in my area they work out of a hospice. As it turns out, they are not only very supportive but very good at cutting through bureaucracy, chivvying doctors and coordinating crises. I now have an agreement that if I get pneumonia again I can go and have IV antibiotics in the hospice rather than in hospital. Having spent a week with pneumonia on a busy acute medical ward, there is no way I would wish to repeat the experience. So my feeling about palliative care is that the vocabulary is muddled and unfortunate, as Laya said, but also that it is a ‘show and tell’ experience: the rhetoric around it is frightening, but the reality is reassuring and helpful.

  • Dr Harman says:

    “the rhetoric around it is frightening, but the reality is reassuring and helpful.”
    Very well put, certain spring!

  • FaithAndHope79 says:

    Thank you, Dr. Harman. This is very educational. Very oftenI stay away from scary thoughts and hard topics. But I do like to read eye-opening articles because I know getting myself educated is part of my battle with cancer.

  • Dr Harman says:

    You’re welcome, FaithAndHope79. I think we all stay away from scary thoughts and hard topics to a certain extent.

  • reginac says:

    Because I am looking at this issue now (just found out I have 3 mets to the brain today), this is a timely discussion. But my insurance will only pay for 6 months of palliative/hospice care, so I think I have to be careful about when it gets started. I am sure it is not cheap.

  • certain spring says:

    Dear Regina – Really sorry to hear this, but as you know the treatments out there are excellent.

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