Blake Anderson, 64, lives with numerous medical conditions, including chronic back pain, the rheumatic disease ankylosing spondylitis, other autoimmune conditions affecting his tendons and nerves, and non-Hodgkin lymphoma, a lymphatic cancer. But although he is disabled and in pain, he says he deeply values life and has no wish to end his.
Residing in a board-and-care facility in Carlsbad, California, he has good friends and enjoys reading, conversation, learning new things and traveling the world via the Internet. But he also has a POLST form, signed by his doctor, spelling out the treatments he would not want to receive in the event of a medical crisis in which he could no longer speak for himself. Were his heart to stop beating, he would not want medical personnel to try to resuscitate him.
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POLST is a medical form completed by a doctor, nurse practitioner or physician assistant in consultation with the patient. It allows people with serious or chronic illnesses or the frailties of age to spell out what kinds of medical care they would want to be given in potential future medical emergencies.
Unlike legal documents such as the more familiar living will or other advance directives, which can be completed by those in good health, POLST is for when a serious diagnosis is known to the patient. It is more likely to be recognized, read and honored by emergency responders who show up for that potential emergency, such as a heart attack, when someone calls 911.
And, POLST advocates say, it’s not just about saying no to interventions such as cardiopulmonary resuscitation (CPR). Some POLST documents may detail that the person does not want to go back to the hospital or be put on a ventilator. Other orders might note a trial period to see whether aggressive treatments would be successful. But patients can express their treatment preferences, including for doctors to “do everything” medically feasible to keep them alive, if that is what they wish. Ideally, the POLST form signed by the doctor is copied to the patient’s electronic health record and given to close family members and the patient’s named surrogate decision maker for health care decisions.
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Anderson’s doctor, Karl Steinberg, M.D., a geriatrician and hospice/palliative medicine physician in Oceanside, California, who makes home visits for Scripps Health, visited him at home to talk about POLST. “When he found out that I would not want to be resuscitated, Dr. Steinberg told me about the bright pink form I could fill out and put up on my wall where it could clearly be seen,” Anderson says. “I didn’t know there was such a form until Dr. Steinberg told me. It took some worry out of [the medical situation] for me.”
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Steinberg told Anderson that discussing goals for medical care is a routine part of his visits with older patients. “I’m a big proponent of POLST in my practice,” he says. But patients shouldn’t be shy about bringing it up to their doctors or talking about it with their families. CPR is not what it looks like on TV, Steinberg adds. “Most people with serious illness don’t survive even the initial procedure, much less get back to a condition of full, active life.” One analysis of over 433,000 Medicare beneficiaries 65 or older who underwent CPR in U.S. hospitals found the chances of surviving and being discharged were about 18 percent.
Devised in Oregon in the early 1990s by medical ethicists and clinicians who had discovered that patients’ preferences for care at the end of life were not being consistently honored, the typically brightly colored, letter-sized POLST form has since spread to most states (and to locations in more than 20 countries) in a variety of versions and names and stages of development.
It has become mainstream, at least among health professionals. The original name, “physician orders for life-sustaining treatment,” is sometimes replaced by “portable medical orders” or simply “POLST.” The National POLST office, which is leading efforts to standardize its dissemination and promote recommended national language for the states to follow, calls POLST a process and a conversation as well as a form.
POLST has a specific place in medical planning, adds Judy Thomas, CEO of the Coalition for Compassionate Care of California (CCCC), the home for implementing POLST in California. In recent years CCCC has worked to standardize POLST statewide, she says. “We also got it established in statute, which has helped to make health care providers more comfortable with it, knowing they were complying with the law.”
CCCC has also developed training for health care providers on how to have conversations about POLST with consumers and taught hundreds of people to go out and train others. POLST is becoming better known, and more people have seen it used for a loved one, Thomas says. California’s 2021–2022 budget included funds to develop a statewide electronic registry of POLST forms.
In Oregon, with its three decades of experience with POLST, nearly half the people who die of natural causes have a POLST form in that state’s electronic registry, password-protected and accessible to EMS personnel and emergency care physicians, says Susan W. Tolle, M.D., a professor of medicine and director of the Center for Ethics at Oregon Health & Science University in Portland.
“If we could encourage people to take a deep breath and step forward and say, ‘I really want to talk about this,’ it could trigger conversations in their families. COVID is one more reason why we need to talk about it now,” she says.
“It is a true gift if you can engage in advance care planning, which would help your loved ones feel they know what you would want in a crisis and that they are doing what you would have wanted,” Tolle explains. “They won’t have to wake up at 2 a.m. and wonder if they did the right thing.”
Larry Beresford is a contributing writer and freelance medical journalist specializing in hospice, palliative care and hospital medicine. His work has been published in Medscape and KevinMD, among other publications.
