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HOENIX — 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.

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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.

How so?

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?”

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  • “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. It’s not okay to die.”

    I disagree strongly with the tone and tenor of this statement. By accepting that you will die one day, and that it could be any day, even today, it makes it imperative and possible to live one’s life fully in the present. When we keep death in our conscious awareness, the present moment is enlivened.

    I worry that this clinician is protecting herself from her own, not her patients’ suffering. Doubling down on death sends a message to patients and their families that their is no room for welcoming death into the conversation and into the consciousness. If she is uncomfortable with it, how are her patients supposed to find comfort?

    • That is a ridiculous assertion. This woman is clearly not suggesting that one be in denial of their own inevitable death, but that you not become so obsessed with it that you forget to live life while you have it. Life is precious and you should live every moment of it.

      However, I will take this opportunity to say that what she and all other physicians should be more concerned with is the fact that they and their medical cohorts are killing patients needlessly by the hundreds of thousands every year by preventable medical errors. THAT is what needs to be addressed.

    • Larry,
      It is okay to die. Many people greet it with curiosity, a sense of peace, a heightened sense of spiritual fullness. When a physician who is in a position to counsel people at end of life about dying asserts “It’s not okay to die”, she is casting death as a medical failure, and drying up an opportunity to have an expanded, open dialogue about death. She ought to rethink those words.

      Speaking of irrelevant comments…medical errors? Really?

    • Irrelevant to whom? Certainly not me, because my wife was killed by a series of medical errors starting with an inappropriate biopsy followed by the inevitable misdiagnosis and ineffective treatment, then exacerbated by an undiagnosed and untreated HAI, which finally turned septic. And there are 440,000 other victims of this crime as well, every single year. Irrelevant? That number is 7.5 times the number of men killed in the entire Vietnam War. Every; single; year. Don’t talk to me about irrelevancy, unless it is about people like you who feel better telling other people how to view death.

    • I am very sorry for your loss. I don’t doubt that it was painful.

      I think this forum is about this particular MD’s paradigm, which is that the natural fear of death means that death is viewed by patients as a bad thing, and that her message to the patient should be in concert with this pejorative view. Certainly this is the stance of most physicians, who are in the business of curing. But she is in the particular business of counseling people who are dying, because she heads a Palliative Care program. If she cannot find meaning in a patient’s death that is other than negative, that the patient won’t be helped in finding meaning either. Having worked in the field, there is always a tension around the culture of hospice/palliative care versus the culture of cure that can often undermine and invalidate the unique contribution of these programs to improvements in end of life care.

      Here’s what I wish she had said: “Let’s face it, death is inevitable, but unnecessary suffering is inexcusably bad, because it ruins morale and quality of life. Pain, other unpleasant symptoms and emotional suffering are the avoidable failures which we try and view as the enemy, not death. Death is often greeted with grace, and it is also our goal to help the dying achieve this grace. ”

      Larry, seek out a bereavement support group, if there is one near you. Check with your local hospice. I hope you find some peace.

    • I appreciate your comment. I am in grief therapy, but I have a lot of anger about this and I am not going to find real peace until I can find a way to get the medical profession to own up to what it is doing and make a real, substantive and transparent effort to ameliorate the problem. I wrote a letter to the Chief Medical Officer at the hospital where she died, which was not the one that inflicted the HAI; but there were, in my opinion, a series of errors made there as well that may have eradicated the chance that she had to recover. I asked him to answer three pointed and educated questions. I got no reply. Then, three months later I got a bill from the hospital. I wrote them with a very stark and unvarnished reply, told them about the letter I wrote and that they would get paid when I got answers to my questions. Ten days later, I got a letter from their Risk Management Dept. that referenced my original letter and said that they were opening an investigation. Pardon my cynicism, but I think that money doesn’t talk in the medical world, it screams! And “adverse events” that are preventable and yet kill patients are a cancer on the entire profession.

  • I see what you’re saying here, but if you’re struggling with something, be it financial issues or declining health, etc, keeping in the back of your mind that we will ALL die some day offers a degree of relief.

    For me, my life is falling apart and I’m trying my absolute hardest to keep it together. My quality of life is unfavorable and there is little I can do in the foreseeable future to fix it.
    I got dragged into major financial issues because of my family so if I’m to die in some accident soon, my thoughts on it are “Nice, I won’t have to suffer every day anymore.”
    But that’s just me. Not seeking death but if it happens, cool. It’s natural and it comes to us all.

  • “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”

    An antidote: When I was 19 my mother had her second surgery for complications of her stomach cancer diagnosis. Bowel blockage. She was full of metastatic tumors. Our hope for her “cure” evaporated that night. She was dying. A few hours later we were told she was hemorrhaging. Two choices were given to us. Transfusions or don’t do anything with the high probability that she would die. All the family (except unconscious Mom) agreed to give her blood transfusions. It was a Horrible Mistake. We spent the next 6 months in hell watching her literally starve to death and in constant pain. She looked like a Holocaust victim. Skin on bones. Body and face contorted in pain. We were past grieving. It was thank God, it is over. More for me than for Mom.

    When we made that decision not to transfuse her, we were considering OUR needs rather than Mom’s.
    Our emotions drove that decision and nothing else was considered. Emotional decision frequently have bad outcomes. Ours was.

    Back then there was no Hospice. You are at home or in the hospital because your insurance did not cover a nursing home. Mom’s best friend next door was an RN. It nearly took an act of God for her to obtain morphine shots for her pain management. Every 4 hours , 24-7, she had to go to the hospital, return the last empty syringe and obtain another full one to replace it. She did that for 5 months – a Saint. They would never increase the dose as her pain increased. We finally were forced to admit her to the hospital in the hope they could increase her morphine and ease her pain.

    I have worked in health care all my life. My summer job in high school was a nurses aid in a nursing home. I was Mom’s nurses aid through all that. I quit school to take care of Mom. The draft board would have to come and drag me out of the house in chains. They didn’t. 50 year later, I’m a retired occupational therapist. Our health care system has come a long way in managing the terminally ill.

    I did nursing homes, home health, Hospice, hospitals. Seen my share of grim diagnosis and families clinging onto a thread of hope. Saw patients that were just tired of living. Ready to quit. How these families made decisions varied tremendously. Sometimes the decision did not involve the patient. Saw families fight and go to court over the power of attorney for Dad’s health care management. Saw the patients decide to suffer just to meet the needs of their spouse. Others stand up and say, “No, I’m done.” Based on my experiences in life and health care I have a very unusual Advance Directive. My wife does not want the job to unplug me. She doesn’t want to be forced to make those decisions even though they are MY wishes. Her wishes are to be considered but MY wishes will be final.
    I have informed all of my family that I will NOT go to a nursing home if my I am mentally incapacitate.
    I have informed all of my family that consider suicide a viable option for me and for no one to intervene.

    So what business is it for someone outside family to get involved? I believe it is because families frequently make the wrong decisions. But that is based on the health care workers knowledge and experience – aka- values. They see the results of bad decisions like I narrated above. If the patient and family only KNEW what the consequences of their decision might be….. So how do you convey to a family that experiential knowledge? Not the doctor. They don’t have time. 5 minutes a visit. Who’s job should it be? What kind of training should they have? Not your average social worker for sure. Experienced RNs from a Hospice background maybe. Seen some candidates for saint hood in my day.

    If you don’t have an advance directive, make one. I consider the generic ones on line inadequate. No specifics. Regardless, you need to talk one on one with every member of your family about potential scenarios so they have an idea how to implement your advance directive wishes. You can’t put every scenario in it. Just guidelines. And have a frank conversation with the appointed person to see if they REALLY want the job. Many feel a duty but it is not fair to them if they really don’t want to make those kinds of decisions.

  • Very good stuff, as usual, from Dr. Meier.
    I do disagree to some degree that is can very much be part of a clinician’s role to help in “convincing people that it’s OK to die, and that death is natural and death is good.” Maybe not “good”, but inevitable. Preparing people before they are right in the midst of it can really help them go more easily. And that might also help get more patients in the USA into palliative and hospice care earlier, as in other nations.
    Also, re Silicon valley, some of them might be “cool” in addressing this, but what I’ve seen more is denial projected into efforts at immortality. Perhaps understandable, but they are likely in for some big disappointments there.
    Thanks for this interview.

  • In reading about Dr. Diane Meier’s approach to end of life care I was again reminded of the work of Dame Cicely Saunders and her well known quote
    “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
    I believe that Dr. Meier’s approach can open the door to more people and their loved ones, who are reticent about palliative care, being open to it earlier in their lived experience. With the correct approach, such as Dr. Meier’s, the wonderful paradox of palliative care can be realized. Helping the person and their loved ones have quality living and quality end of life care.

  • “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. It’s not okay to die.”

    I understand her point regarding treating life as precious as a doctor, and not forcing people to confront their own mortality too soon so that it overshadows their time spent living. But I question her language here. I think balance is possible on both sides but her language seems needlessly strong.

  • No patient should be written-off too soon.
    This is achieved by fulfilling the 15 safeguards.

    If death by dehydration is selected by the proxies,
    they should make certain that all symptoms of dying will be controlled. This might include terminal sedation if there is any worry about the patient suffering.

    Here are the five top methods for managing dying:
    http://www.tc.umn.edu/~parkx032/MMMD.html

  • Death can’t be judged as a value, “OK or not OK”. It simply is. Life and death are two sides of the same coin, inextricably linked. Each is meaningless and disembodied unless considered in the context of the other. To counsel a patient with life-limiting illness about “living life as well and fully as possible” without acknowledging and problem-solving about their approaching death is to speak only half the truth. It is fundamentally dishonest, and I believe cripples their ability to live life fully.
    One of the best things about practicing Palliative Medicine is the opportunity (and I believe responsibility) to widen medicine’s perspective to clearly include the end of life / death. Our patients lose if we do not speak clearly about the whens, wheres and hows as death approaches. Time and again I see patients and their families find a meaningful path forward by exploring what they value as life is ending. Paradoxically, it is life-giving.

  • Whence comes this preoccupation with “forcing” patients to adopt any particular view, whether the view is that it is “okay to die” or “not okay to die?” The physician no doubt means well, but I find her assertion that “death is not okay” as disturbing as the presumption that medicine would push the alternate perspective. Of course, there is no shortage of practitioners who project their issues onto their patients, much to their patients’ detriment.

    Perhaps the matter could be dealt with more effectively and humanely if we focused on listening to our patients and, within the parameters of truthfulness, assisted them in their desires rather than assuming that it is for us to shape their feelings and opinions. We all have to formulate our philosophical approaches, but we might risk less self-important intrusion into the patient’s experience if we remember that actually, when we’re supporting them, it’s not about us.

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