PHOENIX — Dr. Diane Meier won a MacArthur Foundation “genius” grant in 2008 for her pioneering work in palliative medicine, which seeks to optimize patients’ quality of life by preventing or reducing their suffering.
That journey, she said, started on the first morning of her internship — during which she assisted in an hour-long, fruitless effort to resuscitate an 89-year-old man with end-stage heart disease — and culminated in 1999 with her cofounding of the Center to Advance Palliative Care.
Meier is vice chair for public policy and professor of palliative medicine at the Icahn School of Medicine at Mount Sinai. When she spoke here on a recent day at the annual meeting of hospice and palliative care specialists, there wasn’t a single empty chair in the room.
STAT caught up with Meier for an interview later. The transcript of the interview has been edited for length and clarity.
You’ve been critical about our culture’s increasing focus on discussing and accepting death, and how that could affect the medical community.
I am not critical of the cultural openness to this element of the human experience. Rather, I think the job of health professionals is to help our patients and their families live as well and as fully as possible while they are alive.
We in medicine should not be in the business trying to sell people the idea that death is OK. Death is never going to be OK. And it feels a bit self-righteous to me — as if we are saying it’s a moral obligation for people to prepare for their own death. It makes me very uncomfortable, because that impulse is more about us than about the people we’re trying to serve.
The people we’re trying to serve have serious illnesses, and they’re trying to live as well as they can for as long as they can. This notion that somehow you’re braver or smarter or wiser if you confront your death and accept it and plan for it — this is not what most patients and families are seeking. It’s not what most people care about. And it actually can get in the way of people having a good life.
Because quite naturally, all living things try to avoid death, and are afraid of death. And by focusing on that inevitable event, you’re not living in the present. You’re letting your life be defined by the fear of death.
Can’t the awareness of death help you live more consciously in the present?
Yes. And as a physician, I have a much greater appreciation for the value of present moment, because I’ve taken care of so many people who had fewer moments than they wanted. But I don’t feel like it’s my job to impose that awareness or approach to life on my patients.
Are there any redeeming qualities in this movement?
I think there are societal advantages to it being permissible to talk about the fact of death and its inevitability. People who are facing death perhaps feel less marginalized or beyond the pale, literally, if it’s an acceptable mainstream conversation. And achieving the good death — where death is not full of pain or shortness of breath, or fear, or families falling apart — I think that’s a societal good. But I don’t think you get there by forcing people to face the fact of their mortality.
And it’s not our job as health professionals to be convincing people that it’s OK to die, and that death is natural and death is good. It flies in the face of millions of years of human evolution. It’s not OK to die. Very few people want to die, particularly if they have a quality of life that’s acceptable to them. Life is precious, and sweet, and my job as a physician is to help my patients get as much of that good quality life as they can.
Some of the people who helped start this movement, like Atul Gawande, probed death and dying in order to prompt a conversation about quality of life. He wrote about a diabetic man who was near death, but the medical staff was still micromanaging his diet. The quote was something like, ‘Let him have the damn cookie.’
That’s exactly my point. It’s about helping people live the kind of life that they want. Being in the moment with them.
For a patient, accepting death …
That’s somebody else’s agenda. When they talk to me about it, patients are mostly afraid of what might happen before they die. Will they be short of breath? In pain? And it’s amazing how reassured people are to know that for the great majority of people death is very peaceful. And in the unusual instances where there are symptoms like pain and shortness of breath or confusion or restlessness, we have very effective medicines for those things.
So do you think this societal focus on accepting death will continue to intensify?
There are generational cycles where death is in vogue. Think about Elisabeth Kubler Ross and her book “On Death and Dying,” which had a huge readership. And now we’ve got Paul Kalanithi and Atul Gawande and “Extremis.” It does cycle, this generational rediscovering the fact of death. And now it’s kind of hip, because it’s Silicon Valley. It’s Ideo [the design firm that launched an initiative called “Redesigning Death”]. Cool people are writing about it. Fine. Good. But is this going to change how human beings from time immemorial have thought about and feared their own death? I don’t think so.
And, as you’ve pointed out, we’re more than a little obsessed with immortality too.
The medical profession has quite explicitly become about the defeat of death. Go to the NIH websites: The mission is to eliminate cancer. Eliminate dementia. Eliminate heart disease. As if their true goal is bodily immortality. Now let’s think about that for a minute, and what it’d mean for our society. And yet there’s not even a whiff of irony about this.
Certainly we want to eliminate childhood deaths, premature death. But do we really want to be pouring the entire Treasury into eliminating death among old people? It’s an unquestioned assumption that it’s good. That’s the air we’re breathing. And I think the question is not one of forcing people to look in the mirror and say, “You’re going to die.” The right question is, “What’s a good life for you? How can I as a clinician wrestle the resources and capacities of the health care system into something that’ll serve what matters most to you?”
This seems absolutely absurd to me. WE ARE MORTAL BEINGS, why is it a bad thing to accept that knowledge – just as we recognize we have blue or brown eyes, short stature or tall. These are simply the facts of existence.
Sorry, doctor, but acceptance of death inspires one to live fully and how can that be construed as a negative?
Dear Larry, Wow!! Your wife sounds like an amazing person. I’m impressed she so wisely used her skills as a clinical psychologist to analyze ancient art on the walls of caves. You must carry her work forward in some format, as I’m sure so many would want to learn about her art and scholarship. How wonderful that you so appreciate and admire her work and talent and want to tell the story. I would be thrilled to read about it. In the meantime, please take good care of yourself. Warmest regards, Deborah
Dear Larry, I’m so sorry to hear about your wife and what she went through, what you have both gone through. And you are absolutely right about the communications breakdown within our healthcare systems – they are complex systems, care is more fragmented than ever, and physicians are overworked and understaffed. However, these tragic incidents are unacceptable, much too frequent, and it’s true that the patients usually end up paying the price, but it is not because physicians don’t care. My grandmother died from a disease that was very treatable because her neurologist and internist were not communicating with one another. She was taking high doses of prednisone from each physician that came from different drug companies. There were so many barriers to good health communication in her case. All to say, she died much too soon, angry and without an ounce of peace. It was not a good death. Back to the thread… I believe Dr. Meier is working to help people have a better death with more open communications between the team of providers and the patient, and the patient’s family. This is what good palliative care does. She is training physicians to be better listeners, to work closely with the patient’s values and wishes. My thoughts are with you. May your journey to healing and acceptance continue. Warmest regards, Deborah
Thank you, Deborah; I appreciate your note. My wife also held a PhD. She was a Clinical Psychologist. She was also an astonishing human being whose story should be and will be told. She was also an artist who had undergraduate degrees in Studio Art and Art History, and was working on her MFA in studio painting. She applied for and won a grant to study Cave Art in France in the summer of 2015, and used her skills as a clinician to analyze the cave paintings as if they were part of a psych evaluation. The idea was completely original in the analysis of cave art. She was working on two papers due for peer-reviewed journals and five large paintings based on her experience with the cave art, when she became ill. I miss her.
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