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.
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.