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The Sunday Conversation
Sun August 25, 2013
Hospice Doctor Helps Families Navigate The End Of Life
Originally published on Sun August 25, 2013 9:22 am
Each week, Weekend Edition Sunday host Rachel Martin brings listeners an unexpected side of the news by talking with someone personally affected by the stories making headlines.
Dr. David Casarett is the director of hospice care at the Perelman School of Medicine at the University of Pennsylvania. He works with families as they try to navigate end-of-life decisions.
At least once a week, Casarett says, one of his patients expresses a desire to end his or her own life. "It's a reminder to me that I have to stop whatever I was doing ... and sit back down to try to find out what is motivating that request," he says. "Is it really a carefully thought out desire to die, or is it, as it is unfortunately many times, a cry for help?"
As for his own preferences, Casarett says they've changed. He's been doing research for a book he's writing, and in the process he's become more inclined toward aggressive treatment. "If I were to track my preferences over time, my preferences for treatment at the end of life have gotten much more ... optimistic just over the last six months. So it's a moving target."
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DR. DAVID CASARETT: It's a conversation with patients, with families, with hospice staff who really want to do the best they possibly can, who want to relieve suffering.
RACHEL MARTIN, HOST:
That is David Casarett. He's the director of Hospice Care at the Perelman School of Medicine at the University of Pennsylvania. Casarette works with families as they try to navigate end-of-life decisions. He says the Mancini case brings these decisions into sharp focus. Dr. David Casarett is our Sunday Conversation.
CASARETT: Often what I'm told is that a patient who has severe pain, who has legitimate pain-related needs for opioids might take a little bit more; might be given a little bit more. In trying to figure out what the intention was, and what the intention should be in a case like, I think keeps a lot of our nurses up at night as they struggle to do the right thing.
MARTIN: Can you walk us through a situation, a real life example of how a hospice care worker might have to come up against this problem and how they would make those determinations?
CASARETT: I would say at least once a week I hear from one of my patients some version of: I just can't take this anymore, I wish you could help me end it. Or: If only I had one of those cyanide pills, I would take it.
It's a reminder to me that I have to stop whatever I was doing. If I was thinking about leaving the room, I needed to turn around and go back and sit back down, to try to find out what is motivating that request. Is it really a carefully thought-out desire to die? Or is it, as it is unfortunately many times, a cry for help?
MARTIN: Is there someone who you have counseled, someone that you have helped through this in your practice?
CASARETT: There was one patient I took care of about two months ago. This was a retired academic professor who was suffering from multiple conditions, including cancer; had been in hospice now for several months. And from the story that I took away from my conversations with him and his family, he really had been getting more and more tired. Really, I think, to use his phrase, really ready to go. And after I had known him for about a month and a half, made a very clear request to his daughter - within his wife's hearing - to hasten his death by providing him with extra prescription for an opioid.
This was particularly difficult for me because there was some fundamental disagreement, I think, between the daughter and the wife about what the right response would be. And I think his daughter was much more willing to respect his wishes as she heard them. His wife was much, much more reluctant. And so, we began to understand what was motivating his request. It was really a fear of being a burden to his wife and his daughter.
That gave his daughter a chance to say: You've raised me, you've supported me, I wouldn't be here without you, I owe this to you; caring for you is not a burden - it's really a privilege. And that was the last time we heard that request from him.
That process of unpacking is something that physicians who are trained in palliative care, I think, are better able to do than, say, family members. But it was really, in this case, the daughter's insight into the way her father thought, the way his mind worked. She was one who figured out the puzzle.
MARTIN: Why did you get into this work?
CASARETT: My father actually died when I only five. And from what I remember about the way that things unfolded, I knew enough to know that that is really not the way that end-of-life care should happen. He had a brain tumor. He got very, very aggressive treatment for a very long time. So that I have recollections of most, I don't and have heard third-hand.
But what I do remember is that he disappeared. He literally vanished. Went to the hospital, stayed there, died in the hospital and I didn't get a chance to see him when he died. And that was not an uncommon way to die back 40 or so years ago. But unfortunately it's not an uncommon way to die now. And that really put into a personal perspective for me the opportunities we have to improve end-of-life care in this country.
MARTIN: Have you ever made the wrong call trying to interpret a patient's intentions?
CASARETT: I'm sure I have. I'm thinking of one patient in particular who said very clearly that he wanted help in dying. We talked about what was driving him to make that request. He was afraid of winding up at a nursing home. And I honestly thought that I was able to reassure him. I couldn't promise him that he wouldn't end up in a nursing home. But I did promise - what I promise all my patients - that I would stay with them and whatever happened in the future we would work through together. And he died suddenly about a week and a half later.
CASARETT: It seemed as though he had been getting opioid prescriptions, morphine and other drugs from multiple physicians without my knowledge, and had taken an overdose and had probably ended his life. I really thought that we had had a good conversation - and it wasn't just me. There was a social worker and a chaplain involved, we all got together. We were convinced that we had effectively staged an effective intervention and that we had supported this patient. Maybe something else came up. But I think the other possibility is that we were wrong and that he put on a brave face for us, and then went home and killed himself.
MARTIN: Do you think that you have a clear understanding about your own family members' wishes when it comes to end of life decisions?
CASARETT: I think I do. I've been around the racetrack enough with my patients and their families to know that there are always surprises. My grandmother is about to turn a hundred in the next couple of months. She's been absolutely clear about what she wants and what she doesn't want. Every time I talk with her, she reminds me of everything that she does not want.
CASARETT: And I think to some degree I have a pretty good understanding of what my other family members want. Whether they understand my own wishes I think is another question.
MARTIN: Hmm. You haven't expressed that yet.
CASARETT: I have but I do sort of wonder whether I've been as clear as I could be. And honestly, my own preferences have changed. I'm in the process of writing a book I call "Chalked," about the science of resuscitation. And just in the process researching that book, I've become much more of a fan of aggressive treatment and now all that science can provide.
So if I think I were to contract my preferences over time, my preferences for treatment at the end of life has gotten much more, much more aggressive, much more optimistic just over the last six months. So it's a moving target.
MARTIN: David Casarett is the director of Hospice Care at the Perelman School of Medicine at the University of Pennsylvania. He joined us from WHYY in Philadelphia. Dr. Casarett, thank you so much.
CASARETT: Oh, you're most welcome, my pleasure.
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MARTIN: You're listening to NPR News. Transcript provided by NPR, Copyright NPR.