A Doctor Regrets Telling a Patient He is Dying

In  ‘You’re Dying,’ I Told My Patient. I Wish I Hadn’t. Dr. Daniela J. Lamas writes:

In most contexts, it is a doctor’s responsibility to tell our patients the truth, to help them to understand even the most devastating realities. But when I think about that night, I know that I added to my patient’s pain in the last hours of his life. I wish that I had done it differently. I could have paused and told him that yes, he was going to go home. I could have simply been there with him and said nothing at all. That small kindness might have done more for him than the truth.

Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary.

From The Washington Post, a story by Geoffrey Hosta that is the opposite of the doctors' first imperative: first, do no harm.

I recently tortured an 88-year-old woman with advanced dementia. Her mind was gone. She didn’t know her own name. Like other advanced dementia patients, she suffered incontinence, aggression, immobility, unaddressed pain and more. Her quality of life was dismal.

Her family brought her to the hospital because she had a high fever and was more confused than usual. I knew that she was near her end.

I asked her daughter, son-in-law and grandson what I always ask families managing a relative’s final days: “Do you want us to do procedures that may well be painful and will not improve her quality of life? Or do you want us to let her go in peace?”

Dr, Hosta says most families choose the second option.

How to Make Doctors Think About Death

Health care providers must learn that end of life care is still care.

Modern health care accomplishes great feats of healing every day. But life ends; there are patients for whom real healing has become impossible. Their bodies have simply taken too many hits. Aggressive care can push back their death for a few days, but it is unlikely to keep them from dying soon.

These situations tend to be obvious to clinical staff, and especially nurses. We administer the hands-on care. But for those around us — physicians, families and the hospital generally — they are not at all clear, and too easily clouded by emotion. That’s why we need end-of-life treatment guidelines.

How to Make Doctors Think About Death

A lesson on life’s end: How one college class is rethinking doctor training

"The class, called Life at the End of Life, places students with medical aspirations — before they even apply to medical school — with patients at the Terence Cardinal Cooke Health Care Center (TCC), a nursing home in Harlem. The students enter the doors of the clinic knowing that their patients will not get better, and likely never leave. In an increasingly tech-enabled medical profession, where death is postponed as long as possible, the class challenges pre-med students to confront that ultimate reality, and to learn how to guide patients and their families through it. And along the way it’s challenging their field’s hidebound distinction between medicine and palliative care — between doing everything to keep someone alive, and helping them die with dignity."

A lesson on life’s end: How one college class is rethinking doctor training:

How to Tell a Mother Her Child Is Dead - NYTimes.com

First you get your coat. I don’t care if you don’t remember where you left it, you find it. If there was a lot of blood you ask someone to go quickly to the basement to get you a new set of scrubs. You put on your coat and you go into the bathroom. You look in the mirror and you say it. You use the mother’s name and you use her child’s name. You may not adjust this part in any way. I will show you: If it were my mother you would say, “Mrs. Rosenberg. I have terrible, terrible news. Naomi died today.” You say it out loud until you can say it clearly and loudly. How loudly? Loudly enough. If it takes you fewer than five tries you are rushing it and you will not do it right. You take your time.
...
When you leave the room, do not yell at the medical student who has a question. When you get home, do not yell at your husband. If he left his socks on the floor again today, it is all right.

How to Tell a Mother Her Child Is Dead - NYTimes.com

'The patient is Code 3 critical. Her frail, 90-year-old body is failing. How much should I do to save her life?' - LA Times

"I can't help wondering if what makes end-of-life decisions so complicated is our definition of medicine itself. The idea of doctoring as a pitched battle against disease is compelling. But it belies the uncomfortable fact that physicians are really more stewards than soldiers. Our patients, and indeed each of us, always die in the end. It's remarkable and good that medicine allows us to live 25 years longer on average than we did 100 years ago. But sometimes my profession forgets that the end point of medical innovation and intervention isn't immortality."

'The patient is Code 3 critical. Her frail, 90-year-old body is failing. How much should I do to save her life?' - LA Times

We doctors can’t prescribe a ‘good death’ | Opinion | The Guardian

There is a perception – even a consensus – that death is a problem that medicine should somehow sort out, that a “good death” is something that doctors should be able to prescribe, as we might prescribe a course of antibiotics. But our needs are spiritual, not medical. Medicine’s dominion should be limited and explicitly defined. Medicine, and our culture, would be healthier and happier if we stopped expecting it to solve our existential problems, if we stopped thinking of our bodies as machines, and if we gave up our fantasies of control and immortality. 

We cannot, like misers, hoard health; living uses it up. Nor should we lose it like spendthrifts. Health, like money, is not an end in itself; like money, it is a prerequisite for a decent, fulfilling life. The obsessive pursuit of health is a form of consumerism, and impoverishes us. Medicine should give up the quest to conquer nature, and revert to its traditional, creaturely role of accompanying the dying: the doctor as amicus mortis. It is as difficult, however, to advise someone how to die, as it is to advise them how to live. Death cannot be sanitised or workshopped. We are frail and vulnerable animals yet we have come to believe that everything that happens to us – including death – is our fault, our doing, our responsibility. Human agency has replaced the power of nature, in Freud’s words, “majestic, cruel and inexorable.”

We doctors can’t prescribe a ‘good death’ | Opinion | The Guardian:

HUMANS OF NEW YORK: Doctors Mourn Children Who Die of Cancer

“Some of my colleagues tell me they can’t imagine working in pediatrics. Millions of years of evolution have conditioned us to respond to the cries of a child. We can’t bear to see a child in pain. And once we have children of our own, it makes the work even more difficult. We all handle it differently, but everyone cries at some point. Not in front of the patient, but everyone cries. Every few months we have a ceremony where we mourn all the children who have passed away. We have a slideshow. We make cards. We talk about them and remember them together. We acknowledge that we all feel the loss. And even though our grief is not as significant as the family’s, it’s not trivial either. And we must take time to acknowledge that. Or all of us will burn out.”


HUMANS OF NEW YORK

Art Helps Medical Professionals Connect to Patients

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What doctors don’t learn about death and dying: Atul Gawande

"We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life. If he was pursuing a delusion, so were we. Here he was in the hospital, partially paralyzed from a cancer that had spread throughout his body. The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something very good would result.

We did little better than Ivan Ilyich’s primitive nineteenth-century doctors — worse, actually, given the new forms of physical torture we’d inflicted on our patient. It is enough to make you wonder, who are the primitive ones?

Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it.

As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did.

This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital — say, from a massive heart attack, stroke or violent injury — or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes."





What doctors don’t learn about death and dying |:

Hello My Name Is...Campaign for More Compassionate and Personal Care Starting with an Introduction

"I'm a doctor, but also a terminally ill cancer patient. During a hospital stay last summer I made the stark observation that many staff looking after me did not introduce themselves before delivering care.
This felt very wrong so encouraged and supported by my husband we decided to start a campaign to encourage and remind healthcare staff about the importance of introductions in the delivery of care. I firmly believe it is not just about knowing someone's name, but it runs much deeper. It is about making a human connection, beginning a therapeutic relationship and building trust. In my mind it is the first rung on the ladder to providing compassionate care."





Hello My Name Is...

My Turn : AJN The American Journal of Nursing

"In medical school they taught us everything about keeping someone alive, but no one ever told me what to do when a patient dies. I had never pronounced a patient dead before. No one had even explained to me how to tell if someone is dead.He could tell. He said take your time. Be respectful. Be methodical. Be confident. Appreciate the meaning of the moment for the family. Listen to the heart, look for respiratory effort. Talk straight. Stay for as long as the family needs you. And then he left me in charge of the floor for the night."



My Turn : AJN The American Journal of Nursing

Wisconsin is learning how to die - Vox

One town is making a commitment to conversations about end of life, even if they are not paid for by insurance or Medicare.



"La Crosse is a small town in western Wisconsin, right on the Minnesota border. It has about 51,000 residents. And La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die.

"One of our doctors recently told me that making a plan is just like taking blood pressure or doing allergy tests," says Bud Hammes, a medical ethicist at Gundersen Health System, one of La Crosse's two hospital networks. "It's just become part of good care here.""



Wisconsin is learning how to die - Vox

Doctor wants patients to reclaim dying as part of living - Spokesman Mobile - Oct. 25, 2015

Americans are dying all wrong – spending too much time and money in hospitals and intensive care units receiving invasive treatments instead of enjoying those last, valuable days at home, argues Ira Byock, one of the nation’s experts in palliative care and the chief medical officer for the Providence Institute for Human Caring in Torrance, California.

Byock is calling for a revolution, where health consumers – especially patients and their families – demand a better death on their terms. That means accepting that death is a natural part of life and that at some point medicine can’t save people. It means keeping people out of pain and at home so they can be present in this poignant time that is often sacred for families.

“It means that at some point in time we have to care for their comfort, dignity and support their interpersonal, social and spiritual well being,” Byock said in a recent telephone interview. “We know how to do this. The best hospice, best palliative care and the best nursing homes give us this model and show us the way.”

Doctor wants patients to reclaim dying as part of living - Spokesman Mobile - Oct. 25, 2015

What Older Patients Need From Doctors

A panel of elderly advisors tells medical students that they need doctors who can listen.

"Efforts to introduce relatively healthy older adults to medical students can 'reduce the sense of futility and show [the students] that there are real people with real lives who can benefit from quality health care,' said Chris Langston, program director at the John A. Hartford Foundation, which focuses on aging and health, who has been analyzing the trend for the past several years."



What Older Patients Need From Doctors

Doctors are waiting too long to tell patients death is near

"It’s a surprisingly common theme in American emergency rooms. Family members arrive with patients who are verging on death but can’t articulate whether they want potentially life-saving medical procedures that might also carry the risk of debilitating consequences. They have never had the talk.Obermeyer, it turns out, is developing a novel approach so that patients — and their clinicians — avoid that kind of scenario. The idea is to help doctors know when patients have begun a decline toward death and should have a conversation about end-of-life choices — preferably before they reach the ER...Three years ago, Obermeyer received a National Institutes of Health grant designed to assist “exceptionally creative scientists who propose highly innovative approaches to major challenges in biomedical research.” He said his research has already yielded promising results, with published data coming soon. The next step is to establish a system to alert doctors that a patient’s condition might warrant an end-of-life conversation."

Doctors are waiting too long to tell patients death is near

Poem: What the Doctor Said

What the Doctor Said
by Raymond Carver


He said it doesn’t look good
he said it looks bad in fact real bad
he said I counted thirty-two of them on one lung before
I quit counting them
I said I’m glad I wouldn’t want to know
about any more being there than that
he said are you a religious man do you kneel down
in forest groves and let yourself ask for help
when you come to a waterfall
mist blowing against your face and arms
do you stop and ask for understanding at those moments
I said not yet but I intend to start today
he said I’m real sorry he said
I wish I had some other kind of news to give you
I said Amen and he said something else
I didn’t catch and not knowing what else to do
and not wanting him to have to repeat it
and me to have to fully digest it
I just looked at him
for a minute and he looked back it was then
I jumped up and shook hands with this man who’d just given me
something no one else on earth had ever given me
I may have even thanked him habit being so strong

"What the Doctor Said" by Raymond Carver from All of Us: Collected Poems

Talking to Your Doctor About How You Want to Die - Bloomberg Business

 ""Clinicians are going to need training because unfortunately, they don't get this in medical school," said Harriet Warshaw, executive director of the Conversation Project, a nonprofit initiative to encourage discussion about end-of-life wishes. While every doctor knows how to ask about allergies or family medical history, the process of talking about patients' wishes for their final days is less familiar and less comfortable.
"The idea is to take the time to really try to understand what’s important to the patient, what matters to them," said Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. "What is the patient’s experience of health care? What have they seen other people go through, and how did they feel about that?"
"



Talking to Your Doctor About How You Want to Die - Bloomberg Business

Dalai Lama’s American doctor wants more compassion in medicine

I’m a doctor. Preparing you for death is as much a part of my job as saving lives. - Vox

"I believe we owe it to our patients to have open, honest conversations about what the future holds. Patients and families need to be informed in order to make decisions that are in line with their values.

My patients have all taught me valuable lessons about what a "good death" might look like. Each one has reminded me that there is more to medicine than placing a line to monitor the heart, or performing an intubation. Just because more tests and procedures exist does not mean that we should perform them all each time. Sometimes the most powerful healing of all comes through the simple act of sitting and listening to our patients with compassion.

We know that 75 percent of Americans would prefer to die at home. Only 20 percent actually do. We also know that 80 to 90 percent of physicians would not want CPR or mechanical ventilation at the end of life. Doctors actively choose to forgo the suffering that takes place in our ICUs, because we've seen it and we know better. My goal is to close this gap, to educate my patients about their options based on open, honest communication. I no longer see death as a failure but as a place we are all headed at some point — and if I can help someone live the fullest to the very end, I have practiced the best medicine.

"



I’m a doctor. Preparing you for death is as much a part of my job as saving lives. - Vox