Last summer, Steve Pantilat, MD, was interviewed by GeriPal, a blog (geripal.org) that focuses on geriatric medicine. Dr. Pantilat is a palliative care physician at UCSF. The interview occurred shortly after his book was published — “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.”
We posted a link to the podcast of the interview on Brain Support Network’s Facebook page at the time, but I just got around today to listening to the podcast. Here’s are some highlights for me:
* “There’s this idea that somehow if we talk about what’s really happening, like how serious your prognosis is, or the fact that you have in fact a life limiting illness, that somehow that’s gonna take away hope and so, let’s not talk about it, we need to leave people with hope. But I worry that what that leaves people with is false hope. And that fundamentally, false hope is no hope. And if we talk about hope, we can really promote it and we can encourage it and to recognize that people have hope, even when we take care of people who are days away from the end of life, who are actively dying. They still have hope for things that are meaningful to them. And by talking about it, we can really encourage people to have hope, and to build on and to recognize, yeah, there’s hope for cure, sure. But there’s hope for a lot of other things that can coexist within the hope for cure, or alongside that hope, and we can encourage that.”
* “[We] talk about a good death but I don’t see death as good. I’ve seen it only as being sad and filled with grief and loss, and nothing we do seems to make it good. And the tragedy … I recently took care of a forty-two-year-old woman with an eight-year-old child in the hospital. She died in the hospital. People would say, ‘Oh, that’s a bad death,’ but you know, what was bad is that she died. And if she had died at home, it wouldn’t change the tragedy and the sadness and the grief and loss associated with her death.”
* The interviewer mentioned a story in the book about Sergei, an 80-year-old whose wife has dementia. Sergei hopes that the wife will get better. The interviewer asked Dr. Pantilat if this is false hope. “That I would say is false hope, we know that dementia does not reverse. …I realize that there was nothing I could say that would fundamentally change his hope in his wife getting better and I realize my role at that point was just to support him in that hope. … But, you know, there’s a time to push and there’s a time to accept and support and that was a time to accept and support.”
* “Realistic prognosis focuses hope. They give patients reliable and realistic information they can use to make decisions.”
* “[We] often give people this false choice, we say, ‘Do you want quantity of life or quality of life?’ And it’s somehow, if you want quantity of life, you have to accept all the possible interventions to attack your illness or to treat your illness. Every chemotherapy regimen, every procedure, and so on. And what we know now is that, in fact, there comes a time when some of those things not only don’t help you live longer but may actually ruin your quality of life. Chemotherapy in the last six months of life, for example. And that somehow if you want quality of life, it means you’re not gonna live quite as long. And what we know from Palliative Care, from the research, from the literature in our field, is that you can get both. And Palliative Care helps you live better and at least as long, maybe longer, but certainly no shorter, and you can live well and long. And part of my book, the point is to really get people to engage with and ask for and demand Palliative Care to live well and to live long.”
* He talks about using a word like “progress.” “Like progressive illness, your illness has progressed. ‘Oh, that’s great!’ No, that’s terrible. So I now think about this when I talk with my patients and I say, ‘Your heart failure is worse,’ rather than saying, your heart failure has progressed…”
* “Dignity is one of those very loaded words that’s in fact very personal. … And so we often use this word as a code for certain things. Like, respect your dignity by withdrawing interventions and what we should … If we’re gonna use that word, we [physicians] really need to embed it in what the patient and family think of as dignity and their interpretation of dignity and try to support that idea, not our own.”
* “If despite CPR, you die, your final moments will have been spent at the center of a tornado and while a team works on your body, your family will be watching the horror or be banished from the room. In either case, they won’t be with you, at your side, holding your hand.”
* “I think there’s a way in which people with serious illness think, ‘Why not? Why not just try it?’ And the evidence really suggests that when your illness is very advanced, to the point that you die of it, CPR isn’t really gonna help you. It’s not gonna help you at all and you’re gonna end up sicker. I think there’s a way that people think it’s like reset the computer. … But we all know that even if you survive CPR, you’re gonna be worse off than you were and there are implications, maybe not for you, I think this idea that somehow it’s suffering for the patient, I think is not right. We do CPR generally on people who have died. And so I don’t see that there’s a lot of added suffering to the person who’s died but there is this impact on their loved ones who might be at the bedside. And we have to remember what their experience is as well.”
* “[We] have to be careful to remember that all we’re saying is, ‘When you die, when your heart stops and you stop breathing, we will not try to revive you because it won’t work. We’ll let you die peacefully.’ But that has no bearing on all the other care that we will continue to provide. And we have to emphasize what we’ll continue in the meantime and all the care we will provide to make sure people are comfortable and well cared for so that we don’t see this decision about CPR at the very end as somehow implicating something more than it is.”
You can read the full transcript and listen to the podcast here:
www.geripal.org/2017/07/life-after-diagnosis-podcast-with-steve-pantilat.html
Dr. Pantilat was also interviewed at the Commonwealth Club of California last summer. A recording of that interview can be found here:
www.commonwealthclub.org/events/archive/podcast/life-after-diagnosis-how-live-well-serious-illness
And he was interviewed on KQED’s Forum show last summer. That recording is here:
ww2.kqed.org/forum/2017/08/01/living-well-with-chronic-illness/
Happy listening!
Robin