Six months ago, doctors in a South Jersey hospital told my uncle, Frank, he was going to die. This was not the first time doctors had made this prediction. Since 1985 – and subsequently though a string of diseases – Frank received this sad prognosis. Each time, he managed to rally hope and physical resources with which to stage a recovery. But six months ago, his hope and his resources ran out, and in August, he finally died after have waged battles with cancer and emphysema.
Over the years, my uncle became an unofficial expert for receiving bad news, and he often marveled at the range of reactions he got from doctors charged with informing him of his pending death. My uncle frequently commented on how badly doctors managed to convey the uncomfortable news. Some were embarrassed by their duty. Others were furious at their inability to save my uncle’s life, seeing his potential death as their own failure.
Some doctors, my uncle said, hid their emotions behind a cold professional demeanor. One doctor even ordered his nurse to inform Frank of the unhappy news.
Dennis Maycher, attorney for the Secaucus Board of Education, became aware of this problem this year when both of his parents died with a few months of each other. His father’s death struck him particularly vividly because of the many hours Maycher spent at his father’s side.
“I didn’t know it was going to be like that,” he said. “It all happened so fast, my father slipping into a coma before I could say all the things I had to say to him.”
Maycher – like many family members who survive the death of loved ones – believes he would have done things differently had he known all the details leading up to his father’s death, if someone had made the inevitability of his father’s dying clear to him right from the start. Because he did not know how close his father was to death, Maycher didn’t get a chance to say everything he might have.
Maycher – like my uncle – also noticed how uncomfortable some of the medical professionals were when it came to talking about the issue of death. Maycher also noticed how some doctors took up internal defenses.
“All of the medical people, I think, cared,” Maycher said. “But some were more distant than others.”
Came together
Then in September, Maycher saw a four-part series on PBS by Bill Moyers, “On our own terms, Moyers on Dying.” The events surrounding his father’s death started Maycher thinking. As a trustee at the Hackensack University Medical Center Foundation, Maycher wondered whether or not the hospital could better train doctors to communicate bad news, not just to the family members, but to the dying patient as well.
“I saw a program on public television and wondered why the hospital couldn’t educate its doctors on the subject,” he said. Maycher brought the idea to the hospital administration and they concurred.
“Dennis Maycher came to us and we saw the need for it,” said William J. Marrone, coordinator of organizational education and a committee member for the one-day educational program the hospital held on Oct. 11.
Teaching the doctors how to help
The symposium, called “Communicating bad news: How to ease an uneasy situation,” was not aimed at the general public, said Marrone.
“This was geared towards health care professionals, physicians, nurses, psychologists,” he said. “We invited other professionals health as well as guidance counselors and school nurses throughout the area.”
Marrone said the hospital wanted to provide insight and resources for dealing with those issues surrounding death and dying with the aim of helping to ease the family and the patient.
“Maycher sparked it. While he loved the way his father was taken care of, no one is prepared for news like this, and people often need others to help them deal with the issue,” Marrone said. “The more information doctors have to fall back on, the more comfort they can give to a patient and the patient’s family.”
The full day event included Patricia Murphy Ph.D., a New Jersey doctor who has specialized in this area. The events also included a panel of physicians who gave their reflections on how doctors deal with death, dying and communicating that news to the patient and a patient’s loved ones.
“These are doctors involved in the field,” Marrone said. “They talked about what has worked for them and what hasn’t.” Another lecture covered how caregivers can help with people’s grief, the personal side rather than just the medical reality. The symposium also held sessions on hospices – places terminal patients go to live out the remainder of their lives – and how people face end-of-life issues at various facilities for the aged, such as assisted living facilities and nursing homes. Another session dealt with teaching doctors a family-centered approach to anticipated grief, how medical professionals can communicate bad news to younger members of the family.
This is part of a national movement
The symposium on how to give bad news, is part of a much larger national issue called “Care at the End of Life,” the subject of the Moyers television program and a hearing by the New Jersey Advisory Council on Elder Care held in Edison in 1999. It included medical professionals and state legislators from Hudson County as well as other parts of the state.
In 1996, the Robert Wood Johnson Foundation created a coalition of organizations to improve the quality of care for dying patients in the U.S., which has since worked to identify reforms that would alter the behavior of physicians and other providers. In its report, the foundation said medical professionals need to improve communication and decision-making with respect to end of life care, and change how health care providers and institutions approach the care of dying people.
In August of this year, Osteopathic physicians, at their annual convention in Chicago, adopted end-of-life care principles to help medical professionals deal with the concept of death. These principles seek to allow doctors to ease the pain of dying patients and create conditions that will allow people to die with dignity. One of the key pieces in these principles is the ability of doctors to communicate with patients and their families.
Telling patients about their terminal condition is a relatively new concept, one that – according to Americans for Better Care of the Dying in Washington, D.C. – only became acceptable in the 1960s, something that grew out of other social movements such as the civil rights movement.
Information, according to Dr. Robert Buchman, author of “How to Break Bad News” is important in allowing people to make informed decisions, and how to disseminate that news to patients and families is an important part of a doctor’s practice. Bad news, Buchman said in his book, is “Any news that drastically and negatively alters the patient’s view of her or his future.”
According to the American Medical News, “Some physicians procrastinate, some equivocate, other delegate. It has been a common practice to have the lease senior staff member tell a patient’s family about his or her death.”
Buchman said terminally ill patients need to be directed to realistic goals such as the happy times spent with family members, getting their affairs in order or making a good death. Buchman’s six-point protocol for communicating bad news has become a standard among many in the medical profession.