It happens every day in the intensive care units of hospitals throughout the country: Physicians ask the loved ones of someone kept alive by a ventilator and other medical devices whether the patient would want to live hooked up to machines.
Or, would the patient prefer to forgo extreme life-prolonging measures for palliative care, in which physicians manage the patient’s symptoms — even during aggressive treatments like chemotherapy — and try to help ease spiritual suffering and emotional anguish?
Often, the loved ones are bewildered, confused and frightened — usually because they’ve never discussed such issues with their parent, spouse, sibling or other loved one, according to physicians and officials at The Conversation Project, a nonprofit group based in Cambridge, Massachusetts that advocates that people should talk about their wishes for end-of-life care. A national survey the project conducted in 2013 found that 90 percent of people say talking with loved ones about end-of-life care is important, but only 27 percent had done so. The survey found that 82 percent of people say it’s important to put their wishes in writing, but only 23 percent had done so.
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The dearth of end-of-life conversations between patients who end up receiving critical care in hospitals and their loved ones and health care providers helped inspire Dr. Jessica Nutik Zitter to write “Extreme Measures: Finding a Better Path to the End of Life,” a 2017 book in which the author describes how many old and ill people are put on what she calls the “end-of-life conveyor belt.” In the book, she describes how U.S. physicians are trained to prolong life at all costs, even if that means aggressively treating dying patients.
“They are intubated, catheterized and even shelved away in care facilities to live out their final days alone, confused, and, often, in pain,” Nutik Zitter wrote. She describes in the book how she became an ICU doctor because she wanted to save patients on the brink of death. The book details more than a dozen horrifying cases in which she and other doctors prolong the lives of gravely ill patients who don’t improve, as well as situations in which people lived out their final days in relative peace.
Dying patients
For example, as she heads to her first code (responding to a patient in cardiac arrest) as a medical intern, Nutik Zitter is astonished to find that the malnourished patient is cadaverous, with ashy gray-yellow skin. She conducts chest compressions and “bone grinds against bone under my palms,” Nutik Zitter writes. For 30 minutes, she and other residents compress the man’s chest, until the supervising doctor calls the man’s death.
Nutik Zitter writes that her ICU experiences inspired her to become trained in palliative care. She and her ICU team at Highland Hospital in Oakland, California, are the focus of “Extremis,” a short documentary about the physicians’ efforts to help patients and the people who love them navigate emotional health care decisions. The 2016 film was nominated for an Academy Award.
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“Our current system, however well-intentioned, causes unnecessary suffering,” she says in an interview. “Don’t wait until you’re [critically ill] to be thinking about this. I’ve seen a great difference in the experience of patients who have thought about these things before they’re in the ICU. In my experience, it’s the patients who’ve had these conversations upstream before they’re critically ill in the ICU who end up living the way they want up until the end.”
Your wishes
It’s important to let your health care providers and the people who care about you know what kind of medical treatment you would want — and wouldn’t want — if you become gravely ill or injured. Experts recommend these strategies to ensure your wishes are carried out if you become critically ill and can’t speak for yourself:
1. Put your wishes in writing. If you are 18 or older, you can fill out an advance directive, a simple document that allows you to designate a surrogate or proxy to speak for you about your wishes regarding medical care if you become incapacitated. Such documents can be downloaded from a number of organizations, such as the AARP. You don’t need a lawyer to fill out an advanced directive and file it with your health care providers, says Anna Gosline, senior director for health policy and strategic initiatives at Blue Cross Blue Shield of Massachusetts and an adviser to the Massachusetts Coalition for Serious Illness Care.
Your directive can cover issues like tube feedings for nutrition and hydration, cardiopulmonary resuscitation, dialysis, the use of a ventilator, surgery, chemotherapy, radiation, organ and tissue donation. Such a document could state whether your choices are mandatory or just suggestive, leaving the proxy to make the final decision, says Heidi Rai Stewart, an attorney in private practice in Pittsburgh. Many states require these documents be witnessed by someone other than a health care provider or a relative, and a handful of states require these documents to be notarized. To learn each state’s requirements, you can go to www.joincake.com.
2. Be specific. Before you’re in an ICU, talk to your loved ones and doctors about what kind of medical intervention you want or don’t want if you’re in critical condition. Be aware there’s often uncertainty about whether a medical condition is irreversible or incurable, and family members and doctors in such cases will often opt for continued treatment without clear directions to do otherwise, says Dr. Wendy A. Edwards, director of the Merinoff Palliative Medicine Program at Lenox Hill Hospital-Northwell Health in New York City. Edwards recalls a patient who provides this direction to her family members and doctors: “If there is any doubt about whether I meet the criteria above, I wish the doctors to err on the side of nontreatment.” This provided her caregivers with a clear idea of her wishes.
3. Carefully choose a proxy or surrogate. Choose someone who will represent what you want in terms of medical care if you become incapacitated, says Ellen Goodman, founder of the Conversation Project and a founding member of the Massachusetts Coalition for Serious Illness Care. “It may not be the person closest to you,” she says. “It might be too difficult for someone close to you. It might be a friend with a health care background.” It’s important to tell your proxy that you’ve chosen him or her for this responsibility, and to clearly convey your wishes, says Dr. Michael Mencias, a hospice medical director at MJHS, a health system that provides palliative care and other services in the greater New York area. “It’s pretty common that a person doesn’t know they’ve been named a proxy,” he says.
4. Tell your doctor to be honest. Some physicians are reluctant to tell their patients they’re dying and that no medical treatment will save them, Nutik Zitter says. “Give your physician permission to be honest with you, to tell you whether further medical treatment will benefit you,” she says.
[See: 14 Things You Didn’t Know About Nurses.]
5. Don’t procrastinate. You may be in good health, but grave conditions from cancer, stroke and a heart attack can occur quickly, and trauma from an accident can incapacitate you.
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How to Ensure Your Medical Wishes Are Followed if You’re Critically Ill and Incapacitated originally appeared on usnews.com
