Let’s Talk About Dying: End-of-Life Planning
As a physician who practices both intensive care and palliative care medicine at the public Highland Hospital in Oakland, Calif., I am also the “go-to” person at my synagogue for advice on serious illness.
Four years ago, a fellow congregant at Beth Jacob Congregation, also in Oakland, confided in me that his father, who suffered from severe dementia, was attached to a breathing machine in a local hospital’s intensive care unit. The congregant came to me with the usual questions—should he leave him on it and for how long?
That same year, my rabbi asked me to speak with the family of another member whose skin cancer, which had already spread to multiple organs, had now reached her brain. She was considering a fourth course of chemotherapy. She was so weak she could barely get out of bed. I spent hours with both families, coaching them how to talk to the medical team and helping them figure out what they wanted to say.
In the case of Peter Shankman’s father, the doctors were planning to exchange his temporary breathing tube for a tracheostomy, a more permanent and stable connection that is surgically implanted through the neck. They were also planning to exchange the temporary feeding tube for a permanent G-tube, which is surgically placed through the abdominal wall into the stomach to deliver liquid calories.
For her part, the toxic chemotherapies that Arlene Steinberg, the skin cancer patient, was scheduled to receive were only slightly different than those that had been tried—and failed—before. I felt that these decisions were not in Steinberg and Shankman’s best interest.
There is a public health crisis surrounding frail and seriously ill patients in the United States. Most people, afraid of talking—or even thinking—about death, receive high-tech treatments that support organ functions until they die. But the lives they live on these machines are almost never what they would have signed up for. Their remaining time is filled with suffering, restraints and isolation. It’s not only traumatizing for the patient but for the family, too. Yet it’s done in the name of love.
All of us—patients, families and doctors—are trapped in a pattern of overtreatment. The desire to escape death, combined with the widespread availability of life-prolonging technology, has led to patients often getting swept onto what I call “the end-of-life conveyor belt.” As increasingly aggressive machines take over for patients’ failing organs, the dying become completely dependent on life support.
Because of my unofficial advisory role on palliative care in my synagogue, I wasn’t surprised when I was asked to lead a “death café” alongside my then-rabbi, Judah Dardik. Death cafés have become increasingly common in the United States and Europe over the past several years. The idea originated with Bernard Crettaz, a Swiss sociologist who organized what is believed to be the first café mortel in Neuchâtel in 2004. At these gatherings, people come together in a nonthreatening environment to consider their own goals for end-of-life care, learn how to communicate with a health care team and talk about death and dying.
Speaking at the death café organized by my modern Orthodox congregation felt like the perfect venue to share my insights, even though my views on end-of-life care differ from traditional Orthodoxy. Given the sanctity of life outlined in the Torah and the Talmud, the strictest interpretations of Jewish law prohibit the removal of any treatment keeping a patient alive. That is not my own belief, nor that of mainstream medical ethics, which supports the withholding and withdrawing of life-support treatments for patients who do not wish to remain dependent on breathing machines and feeding tubes. I believe that Jewish law has not yet fully accounted for technology’s capability of keeping bodies alive in new, often gruesome, ways.
With permission from the Shankman family, at the death café I described how they decided to reject tracheostomy, remove the temporary breathing tube and allow their father to die naturally. The deceased, I told the group, was a man who valued his relationships, hated being alone and would have been miserable forced to lie immobile to prevent disturbing the various tubes he was hooked up to.
We also discussed how a patient or designated representative should communicate with the medical team. It might require asking your doctor to be honest with you when the situation is looking grim and options are limited, as was the case with Steinberg, where more chemotherapy would not only have been unlikely to help but might have filled her final days with suffering. Doctors are not trained in, or comfortable with, breaking bad news. They might be more likely to tell you the truth if they feel you are open to hearing it.
The membership of Beth Jacob is diverse, with some congregants adhering strictly to Jewish law while others are less observant. In the public forum—attended by newlyweds, young families, baby boomers and seniors—Dardik and I presented our positions, and we encouraged people to pick their own approach. Although he did not condone the removal of an intervention actively keeping a patient alive, the rabbi did provide some creative halachic ideas. For example, because it is permitted under Orthodox halacha not to start new treatments, it might be acceptable in some situations to not replace an emptied bag in intravenous treatments. Or not to open a new oxygen tank when the old one empties (only possible in situations where the breathing machine uses oxygen from tanks rather than from a continuous wall source). These approaches, Dardik said, would only be acceptable in cases where the patient is known to be imminently dying.
We also discussed the importance of preparing for our own deaths so our loved ones wouldn’t need to guess our preferences. Preparation begins with conversations with family, clarifying preferences and filling out necessary documentation, such as an advance health care directive and a Physician Order for Life Sustaining Treatment (this includes the Do Not Resuscitate directive). These documents help people identify the person or persons who speak for them if they are ill or unable to speak for themselves as well as delineate their personal goals of care in a variety of medical circumstances.
Data shows that communicating about death affects the choices people make and can even improve outcomes. A 2009 study published in the Archives of Internal Medicine revealed that patients who had talked with their doctors about their end-of-life medical preferences chose to use significantly less technology. Only 1 percent ended up on breathing machines, compared with 14 percent who never had these conversations. Only 1 percent received electric shocks and chest compressions in the event of a cardiac arrest, compared with 9 percent of those who didn’t communicate with their doctors about intervention. And only 3 percent who engaged in these conversations with their doctors died in an intensive care unit (rather than in a hospice or at home), compared to 13 percent of the others.
Talking and communicating about death are essential parts of a good life. It is my fervent hope that we continue this important dialogue.
Jessica Nutik Zitter, M.D., is the author of Extreme Measures: Finding a Better Path to the End of Life. Her work is featured in the 2017 Oscar-nominated short documentary, Extremis, now streaming on Netflix.
Considering and Communicating Personal Preferences
Prepare: Motivational videos walk you through the steps of choosing a surrogate decision maker, determining your preferences and communicating them.
The Conversation Project: A starter kit and other tools help people begin the conversation with friends and families about their end-of-life wishes.
Go Wish Card Game: This takeoff on the classic card game gives you an easy way to talk to family and friends about what’s most important to you.
Death Café: This site provides a downloadable guide to facilitate conversation about the end of life among gatherings of people, often strangers.
Death over Dinner: Prompts and materials help guide meaningful communication and conversation over organized dinners intended to tackle these issues.
DOCUMENTING YOUR PREFERENCES
National POLST Paradigm: This site provides state-specific forms for the physician’s order for life-sustaining treatment.
Five Wishes: Using ordinary language, Five Wishes functions as an advance directive in most states but focuses on personal and
National Hospice and Palliative Care Organization: Download state-specific advance directive forms as well as information to help make end-of-life decisions and give support to caregivers.
My Directives: Helps you create an advance directive that you can email to your doctor and family.