The best end-of-life care is customized to the individual patient

July 1, 2013


ANAHEIM, Calif. — While triumphs of medical science allow people to live years with chronic heart failure or other serious chronic disease, such treatment advances also have made it a lot harder for people in America to die a natural death, said Dr. Ira Byock.

In his keynote speech at the 2013 Catholic Health Assembly here, Byock said many patients live with two or three diseases, any one of which would have "taken them away quite gently in the middle of the 20th century" but now are survivable. "Nowadays we doctors talk about the symptom burden of illness," he said.

Byock has written numerous articles and books about improving the quality of death in the U.S. He is director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and a professor at Dartmouth's Geisel School of Medicine in Hanover, N.H. He wove many personal anecdotes into his warmly received speech before a joint general session of the Catholic Health Assembly and the Congress of The Supportive Care Coalition: Advancing Excellence in Palliative Care. The coalition's membership largely overlaps that of CHA, and the two groups co-located their national meetings last month at the Anaheim Marriott Hotel.

It's never easy
Byock related that when his daughters asked him in the spring of 2005 what he would like for Father's Day, he requested that the two college-aged women write advanced directives to guide him and other loved ones in the event either was mortally ill or injured and could not speak for herself. The right-to-die debate had reached a political crescendo that spring, tied to publicity about the controversy surrounding continuing care for Terri Schiavo, a severely brain-damaged woman who had spent years in a persistent vegetative state in a Florida nursing home. Schiavo's husband pressed to have his wife's feeding tube withdrawn. Schiavo's parents objected and waged a public and legal campaign. At one point, President George W. Bush flew back from his Texas ranch to Washington, D.C., to sign legislation giving the parents standing to challenge the feeding tube withdrawal in court. The husband prevailed in court, and Schiavo died on March 31, 2005, almost two weeks after a doctor removed her feeding tube.

Byock recalled telling his daughters that spring, "If tragedy befalls our family, could we at least keep it in the family?"

Byock said he urges his colleagues at Dartmouth-Hitchcock to ask their patients to express their wishes for end-of-life care. He said some doctors are reluctant to do so, especially when they are first delivering the bad news of a diagnosis of a debilitating or terminal disease. Some of his colleagues believe that turning the discussion to end-of-life care at that tender point can quash the patient's hope and increase the patient's fear. But Byock tells them the discussion never gets easier and may get harder as a disease progresses. He advises his peers to begin a discussion on advance directives by telling patients: "We do this for everyone. We ask everyone their preferences. We ask them to complete an advance directive. We think it is part of our standards of providing the best care for people at the end of life.

"The second thing to come out of the doctor's mouth should be, 'I have an advance directive and so do all the adults in my family.'"

Byock said Americans don't want to anticipate or plan for their own deaths. "If you ask an American what the best care would be for you at the end of life, the most common answer is, 'I don't want to think about it.'" As a consequence, "It is always too soon (to think about end-of-life care preferences), until it is too late."

Counseling tool
It is past time for the public and clinicians to take a straightforward approach to end-of-life care planning, he said. "We malign and misunderstand advance directives." People mistakenly think that advance directives are synonymous with do-not-resuscitate orders or the cessation of curative care. Byock said he uses a patient's advance directive as a counseling tool to help families decide the best course of care for their loved one.

Byock told the story of a beloved elderly cousin whose health status was deteriorating following cardiac artery bypass surgery. She was seriously depressed and believed she was dying; she pleaded with her family to let her go home to die, but her cardiologist argued that she should be transferred to a rehabilitation facility. The woman was transferred to rehab and she became severely malnourished as she continued to decline. The family approached Byock for advice, and he suggested his cousin be allowed to move home with nursing and hospice care. He intervened with the cardiologist, and the cardiologist acquiesced after a time, albeit reluctantly, to the woman's return home. "Edith's cardiologist thought we were crazy," Byock said.

Once home, Byock's cousin's condition improved, and her depression lifted. Within five weeks, she had "graduated from hospice," Byock said. He said she credits him and hospice with saving her life. "In hospice care, we are the only area of medicine where you have to be a little embarrassed about saving lives," he quipped.

Human relations
The family anecdotes underscored one of Byock's central themes, that "the fundamental nature of serious illness and certainly, the nature of death is only partly medical, it is intensely personal for the individual and all who love them. The notion of being a human being has no meaning outside of relationship. We matter to one another," he said.

Byock said he starts relationships with new palliative care patients by telling them that, in addition to providing the best treatments for their conditions and symptoms, he wants to attend to their overall well-being. He will tell a patient: "In focusing on your physical health, I don't want to ignore how this illness affects your personal life, your family, your hopes, your fears."

The best end-of-life care does not derive from a one-size-fits-all model, Byock said. "In palliative care, we become an expert on patients, one family at a time. The very definition of quality involves care being consistent with the values and preferences of the people we serve."


Copyright © 2013 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.

Copyright © 2013 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.