Talking about end-of-life issues
By Deborah Gesensway
SAN DIEGO—The internist had to tell Mr. Lambert, a 74-year-old retired machinist, that a recent CT scan showed a large pancreatic mass that had metastasized to his liver, but Mr. Lambert's agitated daughter was worried that the news would devastate him. Her mother had died a painful death from cancer 10 years ago, and the memories were still vivid in the family members' minds.
This scenario was acted out at a clinical skills demonstration, "Communicating with Patients at the End of Life," at Annual Session. Through role-playing, the participants illustrated ways of delivering bad news, taking a history to elicit the patient's values, talking about death and dying, and working with families during their grieving process.
The course was part of a new track on how to improve end-of-life care offered at this year's Annual Session. The track also included courses on how to address psychiatric and spiritual issues at the end of life and how to treat pain in dying patients.
Panelists at the clinical skills demonstration, which used standardized patients, stressed that when it comes to delivering bad news, internists need to think about more than just the patient. In the case of Mr. Lambert, for example, Wendy Levinson, FACP, who was playing the role of Mr. Lambert's physician, suggested that the daughter come into the office with her father. The patient needs to be told, said Dr. Levinson, of the University of Chicago Pritzker School of Medicine. Plus, she said, the father and daughter would cope with the news better together than alone.
As it turned out, the daughter could not be with her father to receive the news, but ultimately conceded that her father needed to hear the truth. When Mr. Lambert came into the office the next day, Dr. Levinson got straight to the point: "As we talked about, there is a cancer in your pancreas ... and it's fairly advanced in your case. ... This is not a type of cancer that can be cured." The internist then paused for what seemed a long time.
It actually turned out to last only 15 seconds. However, it was a crucial part of what panelist Richard M. Frankel, PhD, director of the Primary Care Institute at Highland Hospital in Rochester, N.Y., said were the principles of delivering bad news: getting directly to the point, being brief, avoiding euphemisms and medical lingo (in other words, say "cancer," not "tumor"), and then giving the patient some silent time to process the news and respond in his own manner.
When Mr. Lambert, who had been fairly stoic throughout the role-playing, started to show some emotion, Dr. Levinson moved her chair closer to him. "This indicated nonverbally that she won't pull away from him" during his illness, Dr. Frankel said.
Internists need to understand that no patient in Mr. Lambert's situation is going to leave the office "satisfied." Explained panelist James A. Tulsky, ACP Member, of Duke University Medical Center in Durham, N.C., "That shouldn't be our goal in this case. You want to give [the patient] information and an understanding that the doctor won't abandon him."
The next encounter in the role-playing was supposed to take place a month later, after Mr. Lambert had been hospitalized for placement of a biliary stent. During his hospital stay, he had developed pneumonia but was now recovering.
It was time for doctors to talk to Mr. Lambert about what type of treatment he might want in the future. "We want to broaden the discussion about advance directives, do-not-resuscitate orders," Dr. Tulsky said. "We need to elicit a values history."
Learning about the patient's values—the most commonly mentioned include family and interpersonal relationships, spiritual beliefs or religion and independence—can help physicians work with patients and their families as they make tough decisions about treatment.
Panelists emphasized that when talking about dying, internists should remember to address psychiatric issues such as depression, as well as spiritual issues. Patients often want doctors to recognize that their religion is an important part of their life, explained Dr. Tulsky, and frequently a discussion about perceptions of God and afterlife can help patients articulate what they think they have left undone in their lives. This, in turn, can give doctors an opening to raise the often sensitive issue of hospice care.
At another session, "Psychiatric and Spiritual Issues at the End of Life," speakers said that treating spirituality and religion as taboo subjects is simply ignoring a coping mechanism. "Remember, we are always trying to cut down the disability," explained Edwin Cassem, MD, chief of psychiatry at Boston's Massachusetts General Hospital. "It's mandatory to explore the taboo."
Recent studies have found that only about 13% of terminally ill cancer patients had a major depression, which means that the majority of dying patients are not clinically depressed, according to William Breitbart, MD, chief of psychiatry at Memorial Sloan-Kettering Cancer Center in New York. As a result, many terminally ill patients will not respond to antidepressant drugs or other therapies designed to treat depression.
To determine which patients at the end of life are clinically depressed, Dr. Breitbart suggested the following screening question: "Have you been depressed most of the time in the last two weeks?" Another way to think of it is that if the patient describes being depressed "all day, every day," clinical depression is probably present.
What if the patient does not appear to be clinically depressed but is depressed enough to make you concerned? Because serotonin-specific reuptake inhibitor (SSRI) type antidepressants have few side effects, Dr. Breitbart said, there is not much of a downside to prescribing them to terminally ill patients who may not be clinically depressed.
He said physicians who specialize in care of dying cancer and AIDS patients also think about prescribing psychostimulant drugs, such as Ritalin, as a first-line therapy because they tend to work very quickly in helping with depression, appetite, cognitive deficits and fatigue. They also tend to work as a good adjuvant to analgesia, working in conjunction with opiods to control pain.
In terms of pain, studies are also showing that uncontrolled pain or fear of pain are not the main reasons why patients say they want to die. "Adequate palliative care is turning out to be more than pain control," Dr. Breitbart said. "It's turning out to be addressing psychological and spiritual issues."
Not that pain should be ignored. At another course on assessing pain at the end of life, Eduardo Bruera, MD, a palliative care expert at the University of Alberta in Edmonton, Alberta, Canada, said that in treating pain, it is critical to recognize that physicians—and nurses—tend to understate patients' pain. "We can only measure how the symptoms express themselves," he said.
Therefore, he said, providers must always ask patients about their pain—using a 10-point scale or any other one that works for them—and charting the response to see if prescribed interventions are actually working for that particular patient. Patients given the same amounts of opiods, he said, often experience very different levels of pain control.
Realizing also that internists cannot really treat dying patients well until the doctors themselves understand their own views of death, a four-hour workshop tried to convey the complex emotions that patients nearing the end of their lives feel. After the workshop, many internists who participated expressed feelings of guilt and anger. "This gives you an idea of what might go through your patients' minds when you give them a diagnosis of death," explained course leader Dr. Tulsky. "Our own anxiety about death is a huge reason we're not very good" at talking to dying patients.
Back to the case of Mr. Lambert, physicians tried to address the issue head on. "You've gotten better from the pneumonia this time, but many people with cancer die of infections like these," Robert M. McCann, ACP Member, an internist from Rochester, N.Y., told Mr. Lambert during the role-play. "Can you imagine when life would not be worth living?"
Dr. Tulsky said that the key is to follow up on any responses to understand why the patient may feel this way. Asking about previous experiences the patient may have had with family members or friends who died, or having the patient describe what "quality of life" means, can elicit information about treatment decisions, even if not expressly worded this way.
Two weeks later, Mr. Lambert was readmitted to the hospital with severe pain. Once that was under control, Dr. Levinson called for a palliative care consult to talk to the patient about dying and explain what hospice care might do for him.
Two weeks after being discharged from the hospital to hospice care at home, Mr. Lambert died. His son and daughter were with him. It was an entirely different experience than his wife's death.
The audience gave him a moment of silence.
Six stumbling blocks in end-of-life care
The following topics were identified by internists at Annual Session as the most troublesome when dealing with dying patients:
- Breaking bad news.
- Dealing with denial—either on the patient's part or on a family member's part.
- Getting over the taboo of talking about spirituality with patients.
- Knowing the difference between sadness and true depression.
- Coping with requests for assisted suicide.
- Using non-verbal communication.
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