Doctor Dialogue on End-of-Life Care

Brittany Maynard, 29, who suffered from glioblastoma multiforme, an aggressive form of brain cancer, captivated millions of Americans, but also stirred up controversy when she posted her plans on social media to “die with dignity.” Maynard moved from California to Oregon, where it is legal for a doctor to prescribe a life-ending drug to a terminally ill patient. So-called physician-assisted suicide is also legal in Vermont and Washington state. It has also been legalized in Montana via court ruling, not legislation.

Right to Die laws have been introduced in Connecticut, Hawaii, New Hampshire, New Jersey, Pennsylvania, Kansas, and Massachusetts. Meanwhile, a coalition of leading Southern California healthcare providers has issued a set of guidelines calling for more compassionate care while respecting patients' wishes.

Do doctors believe we’re providing good end-of-life care to patients? Are Death with Dignity laws the way forward, or do they undermine doctor authority?

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Doctors Need More Training in End of Life Communication

Dr. Eric Kodish, director of the Center for Ethics, Humanities, and Spiritual Care at the Cleveland Clinic, who cared for children with cancer for 15 years before serving as a medical ethicist, told Healthline, “There’s been a reluctance to confront mortality among the American population. Our society acts as though nobody is going to die, when the only certain thing is everybody is going to die.”

Kodish said the Institute of Medicine’s September report, “Dying in America,” highlights the need for more communication skills in medical school curricula.

Our society acts as though nobody is going to die, when the only certain thing is everybody is going to die.
Dr. Eric Kodish, Cleveland Clinic

Attending medical school in the late 80s, hospice was fairly new, and “death was viewed as the enemy,” Kodish said. Although the Cleveland Clinic’s medical school and others in the nation are starting to teach these communication skills, Kodish said, “Certainly in medical education there’s a long way to go in terms of educating physicians about communication, palliative care, and hospice.”

Kodish cited a randomized study published two years ago in the New England Journal of Medicine that was conducted on lung cancer patients. Half of the patients received hospice care, and these patients lived longer than the remaining half who received typical medical interventions.

“People are worried they are going to live less of a long life when they get hospice, but paradoxically it might quite be the opposite,” said Kodish.

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Kodish is in favor of national adoption of advanced directives, or POLST, which stands for Physician Orders for Life-Sustaining Treatment. POLST is a standardized document that encourages doctors to speak with patients and create specific medical orders to be honored by healthcare workers during a medical crisis. POLST began in Oregon in 1991, and is currently promoted in more than 26 states through national and statewide initiatives.

“Ethically, the most important thing is to respect the wishes of the patient when he or she has the ability to make their own decisions,” said Kodish.

The Cleveland Clinic system does 500 ethics consultations a year, and end-of-life consultations are the most common. Without advanced directives like POLST, Kodish said, “The effort to get family members to say, ‘What would your dad have decided if he were to make the decision himself?’ is critical. So often doctors don’t frame it that way. They say, ‘What do you want us to do?’ Because of that difference, we over-treat a lot of people, and cause a lot of suffering at the end of life that people themselves would not have wanted.”

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More Staffing Urgently Needed

Dr. Ira Byock, founder and chief medical officer of the Providence Institute for Human Caring and author of “Best Care Possible,” believes the American health system is failing people with serious illness and their families.  “We need an engaged public to know what better care looks like, and to know what questions to ask, and to demand it,” he said.

Once you know what a person’s personal preferences and priorities are, it becomes easier to give them the best care we possibly can.
Dr. Ira Byock, Providence Institute for Human Caring

Increased staffing is urgently needed in nursing homes, assisted living facilities, and in-home health programs in order to preserve people’s dignity, especially those who are frail and physically dependent. “All of this is made even more maddening because we know that in geriatrics and in hospice and palliative care, we have demonstrated that much better care is both feasible and affordable,” he said.

Byock is optimistic that communication training programs for doctors are being instituted, and that hospice and palliative medicine are becoming full medical specialties, but he acknowledged, “It’s not nearly enough to meet the health needs of an aging population with increasing prevalence of chronic illness.”

Medical residents should understand the distinction between medical treatment and whole person care when communicating with patients, he said. They should learn about the person they are treating and what matters most to them. “Once you know what a person’s personal preferences and priorities are, it becomes easier to give them the best care we possibly can,” said Byock.

Is Physician Assisted Suicide Driven by Fear of Death?

Dr. Glenn Braunstein, vice president for clinical innovation at Cedars Sinai Medical Center in Los Angeles, California, told Healthline that fear of pain and suffering at the end of life is driving  patients’ concerns about death with dignity.

“People with terminal illnesses also suffer from depression, which may be what drives patients to want to undergo euthanasia and have either physician-assisted suicide or commit suicide using pills.” Braunstein said.

Grand Canyon

Braunstein is a strong proponent of advanced directives, and Cedars is working with clergy in hospitals in Los Angeles to encourage congregants to fill out advanced directives.

All adult patients over age 50 should receive advanced directives as part of a routine visit to their primary care physician, and it is especially important that the forms be given to cancer patients and chronic obstructive pulmonary disease (COPD) patients before their first visit with a specialist.

“It’s very important for patients, while they are relatively well, to make these choices and decisions and talk about them with their families and a healthcare advocate, and then to get the form scanned into the electronic medical record in their health system,” Braunstein said.

He went on to say that death is a fact of life, and we need to plan for it. If we don’t, we are robbing patients and their families of the opportunity to do things in a planned, well thought out, methodical way, he explained.

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Braunstein, who is a strong advocate of relieving pain and suffering with palliative care, said Maynard made a rational decision for herself, but no one knows for certain if the decision was right. Predictions made about the pain she would suffer may not have been accurate. “There were other options that personally I’d like to have seen her or others in her situation explore,” said Brauntstein.

Kodish believes that a doctor should not be the “agent of death.” However, in states where it is legal to prescribe medication to a patient so the patient can commit suicide with the assistance of a physician, he said we need to be very humble. While he said he would not write a prescription to allow someone to commit suicide, he also wouldn’t outlaw the practice.

How Do We Talk About Serious Illness?

Dr. Rachelle E. Bernacki, director of quality initiatives at the Dana-Farber Cancer Institute in Boston and associate director of the Serious Illness Care program at Ariadne Labs, has co-authored a study called “Communication About Serious Illness Care Goals.”

Published in JAMA, the study also includes a Serious Illness Conversation Guide, developed with the assistance of Dr. Atul Gawande of Brigham and Women’s Hospital.

The guide is being used in a two-year randomized, controlled trial at Dana-Farber with 95 doctors and 370 patients. Bernacki said projections show a shortage of 12,000 palliative care doctors, so the guide should be used by palliative care doctors to train other doctors to talk to patients about serious illness.

The first question doctors are encouraged to ask patients is, “What is your understanding now of where you are with your illness?“

Bernacki said that 80 to 90 percent of patients want to know everything about their prognosis. “We ask physicians to really give prognostic ranges and to say, ‘We anticipate you have years, or if they are in the hospital, days or weeks.’

“Patients need to know their time is limited so they can say what they want to accomplish, get closure with their relationships, and put their finances in order. The guide suggests asking patients, ‘If your health situation worsens, what are your most important goals?’” she said.

Doctors should also refer patients to hospice early, because although the number of people getting hospice care is increasing,  the length of stay in hospice is decreasing because many are referred too late.  

Finally, Bernacki said to assign a physician team leader responsible for initiating the end-of-life discussion with patients. “If no one is responsible, it doesn’t get done,” she said.

Photos courtesy of www.thebrittanyfund.org.

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