I usually don’t give a second thought to the white coat I wear each day in my work as a hospitalist. Today, though, the beginning of Yom Kippur, it takes on a special meaning. Jews the world over wear white clothing on this day to symbolize atonement and remind us that someday we’ll be buried in white, too.
My white coat and I have seen many patients die. Sometimes we even play a role in their deaths. I think of the time I snapped an elderly man’s ribs in a futile attempt to keep him alive.
At age 88, Mr. K was suffering from end-stage kidney failure. I, fresh out of medical school and ready for action, was on call in the intensive care unit the night his heart stopped. My team spent half an hour doing everything possible to keep him alive. While a code blue alarm wailed mournfully in the background, we punctured his paper-thin skin again and again as we inserted intravenous lines into his blood vessels, and placed a sturdy breathing tube into his windpipe.
I did the chest compressions that broke Mr. K’s ribs.
We did “everything possible” for Mr. K, but he still died — in pain, in a room full of strangers.
Later that night, I wept on the phone with Mr. K’s daughter, who was out of town on vacation and surprised to hear that her father had been admitted to the hospital, even though he’d been admitted six other times in the past nine months. She was even more shocked to hear that he had passed away.
Western culture and medicine are rooted in the belief that life is to be preserved and protected at all costs. From day one in medical school, physicians-to-be are taught that if a patient dies, it’s usually because they made a mistake or that something beyond their control went wrong. Millions of people near the end of life suffer needlessly because of a health care system that casts death as our ultimate adversary.
It’s not just fear of failure that drives physicians to do everything we can to keep our patients alive. Perverse financial incentives are also at play. We’re paid to do things to people, like perform procedures and surgical interventions. Those incentives permeate the culture of caring for patients. We have automated care in a way that my friend and colleague Dr. Jessica Nutik Zitter calls the phenomenon the “medical conveyor belt of care.”
In the United States, patients receive aggressive, invasive care by default, no matter their age or underlying medical problems, unless they’ve formally articulated the alternative they desire. Studies show that 80 percent of people wish to die at home, but only 20 percent actually do.
Imagine the most helpless, vulnerable person you know being kept alive by a machine that breathes for him or her, hooked up to various other machines, being bounced from place to place and doctor to doctor in an effort to “do everything possible.” Imagine that all this person wants is to be at home, surrounded by loved ones in comfort and in private. And imagine that none of the physicians know that, because they didn’t bother to ask.
I’ve seen this story play out time and time again. It has made me come to believe that the way we treat dying in America today is a public health crisis. That revelation led me to become an impassioned proponent of end-of-life care. It’s why I founded the End Well Project, an interdisciplinary symposium to bring together diverse perspectives to transform the end of life into a more human-centered experience.
It’s unlikely that most of us will be able to control all of the circumstances of our deaths. But we can take measures to ensure that our wishes for end-of-life care are articulated and understood. The best way to do this is to create a will or trust that contains copies of your advanced care directive and a Physician Orders for Life-Sustaining Treatment form. Add a layer of protection by consolidating all of your preferences where your family can easily access them in an actual or virtual folder.
The most important thing you can do is to communicate your wishes now, when you’re able. Don’t wait until the moment that decisions need to be made. It’s not fair to your loved ones. I can tell you, and, the data support it, that family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about a loved one’s wishes in a relaxed environment without a crisis looming.
Choose a health care proxy, someone who will make health care decisions on your behalf if you aren’t able to make your own decisions Most people choose their partner, a parent, a child who knows you well, or a very close friend. But don’t tell them how you want to die. Tell them instead how you want to live. Talk about your goals and values, talk about your fears. There are many good resources to help with these conversations: a card game called Go Wish, a living will template called Five Wishes, or a website called The Conversation Project dedicated to helping people talk about their wishes for end-of-life care, and more.
Perhaps surprisingly, you may have to lead the conversation with your doctor. Nearly 70 percent of doctors say they haven’t been trained to have these difficult conversations, and about half say they don’t feel comfortable sharing the news of a terminal illness. Yet a doctor can beneficially alter the course of a patient’s life simply by having conversations about options, goals, and values; by clearly articulating and explaining the prognosis; and by discussing advance care plans.
Among Jews, Yom Kippur is the holiest day of the year. This day of fasting, meditation, and prayer reminds us that time is limited, that there may not be a tomorrow. My Jewish tradition requires that I embrace dying because it can help me live better.
So this is a perfect time to for anyone to ask, “What does it mean for me to live well until the very end?” Then set yourself on a quest to answer for yourself and with those you love. After all, these end-of-life discussions aren’t really about how we want to die. They are about how we want to live and appreciate to the end the miracle of our lives.
Shoshana Ungerleider, M.D. is an internist practicing hospital medicine in San Francisco.
I often see the term “advanced directives” in these articles. I believe the correct term is “ADVANCE Directives.” The meaning of the term has to do with planning ahead in order to communicate wishes regarding end of life treatment.
Dr. Ungerleider,
God bless you for the work you do. Advanced directives, appointing a health care power of attorney who respects your wishes for end-of-life care, and discussing these wishes with your doctor (s) are very important and I commend you for bringing them up.
But first, I would caution readers to examine their state laws about POLST (or MOLST laws as some some states label them), very carefully. In some states, they become permanent unless a patient requests that they be reviewed. In others, they must be reauthorized regularly. In my home state, Ohio, the proposed POLST law requires an annual review, which seems prudent. A patient’s condition or views on end-of-life care may change after s/he or signs a POLST. She might change her mind on medical interventions she once did not wish to have if her health improves or vice versa. If there is no law that specifies
a POLST review, a POLST could work against a patient’s end-of-life wishes from one year to the next.
Secondly, it depends on the part of the country and the physician, but there can be a subtle or not-so-subtle bias against treating the elderly and/or patients with Alzheimer’s or another form of dementia regardless of what their advanced directive states or health care power of attorney wishes. In no way, do I wish to imply that this is your bias or belief, but it does happen. Two personal examples to illustrate my case:
1) My late father-in-law needed a two heart valves replaced at age 82. The cardiovascular surgeons at the regional medical center where he was been treated said he was too old. My husband and I said that was ridiculous and urged he and my mother-in-law to seek another opinion. They consulted another surgeon at a teaching hospital in a larger city 40 miles away. He said age alone was never a barrier and considered him a good surgical candidate. My father-in-law had the surgery and lived another three years post surgery, traveling with his wife and seeing one of his granddaughters complete college.
2) My 61-year old husband has frontotemporal degeneration (dementia). Shortly after he entered long-term care at age 59, I attended a lecture by a palliative care specialist at our state’s flagship public medical school. His subject was end-of-life care for people with Alzheimer’s and related dementia. During the Q&A, I asked him what would happen if my husband was transported to a local ER with a very serious, but not quite life-threatening, emergency. His advanced directive stated that he was a full code and was to receive all-out medical treatment. What if the advanced directive didn’t arrive with his chart? Would he receive it if I couldn’t make it there in time to insist that that happened? He was on Medicare, not Medicaid, not that should have mattered. This physician told me that ***it would have depended on the attending physician***. I was appalled and told him so. “Would the same physician done the same thing for me? I’m two years older than him,” I asked. “No, a doctor should have treated you aggressively,” he said. “That’s discrimination on the basis of disability,” I said. He answered back, “You feel that way, but other families might consider it a blessing.”