The end-of-life discussion: How do you say it?

Some contend that oncologists are not having appropriate conversations with their terminally ill patients.

The front door of many major news websites, including CNN.com, recently spotlighted an Associated Press article calling out oncologists for not having end-of-life discussions with their patients. The headline: “Cancer doctors dodge the death talk.”

The ammunition used to fire such a story came from preliminary results of a study examining the effects of end-of-life discussions on patients’ medical care. The results of the Coping with Cancer study, presented at the 2008 ASCO Annual meeting in June, showed that one-third of terminally ill cancer patients had discussed end-of-life care with their physicians.

Sharon M. Weinstein, MD, is Director of Pain Medicine and Palliative Care at Huntsman Cancer Center Institute at the University of Utah. Photo by Adam Finkle

An article published in the June issue of the Journal of the American Medical Association stated that clinicians involved in oncology and palliative care could be more effective by telling the story of a man who suffered through chemotherapy days before his death and resisted entering into hospice care until his prognosis and options were explicitly communicated.

This all coincides with a proposed California bill that would require physicians to have open discussions with their dying patients. Also, it would require that health care providers who do not wish to comply with a particular patient’s choice must refer or transfer the patient to another provider.

Are oncologists really not having the appropriate end-of-life conversations with their patients? Do end-of-life discussions cause distress to terminally ill patients, offering little or no benefit?

HemOnc Today spoke with a number of experts in the field to examine whether there needs to be an improvement in dialogue with patients regarding this matter and what they feel is the best approach to guiding a patient through the dying process.

Michael Wong, MD, PhD, medical director of clinical drug development at Roswell Park Cancer Institute, told HemOnc Today he was not shocked by the study results.

“We can do better, and all oncologists want to do this right,” said Wong. “But we are also cognizant of the fact that hope itself has therapeutic value, and it can be destroyed by early or botched disclosure of prognosis.”

Sharon M. Weinstein, MD, director of pain medicine and palliative care at Huntsman Cancer Center Institute at the University of Utah, Salt Lake City, stated what many of the oncologists interviewed had expressed: The statistic could be misleading for many different reasons.

“For example, I have witnessed a long, careful, thorough end-of-life discussion between an oncologist and patient and on meeting with the same patient a few hours later have been told that no such discussion occurred,” Weinstein said.

Coping with Cancer is a prospective, longitudinal, multi-institutional study funded by NCI/NIMH. More than 600 patients who had advanced cancer and a caregiver (such as a spouse or adult child) were interviewed on enrollment and followed until death.

Patient and caregiver were first interviewed, and then within a few weeks after each death-research staff reviewed medical records and interviewed the patient’s caregiver. A median of 6.5 months later, caregivers were once again interviewed to assess bereavement adjustment.

Of the 603 patients, only 188 (31.2%) reported having end-of-life conversations with physicians.

“This study confirms our experience with terminally ill individuals throughout the nation,” said Barbara Coombs Lee, president of Compassion and Choices, a nonprofit organization working to improve care and expand choice at the end of life.

“Patients who ask about their prognosis and end-of-life options desperately want candid, comprehensive information. They feel abandoned when their physician evades the question with a pat on the knee,” said Coombs Lee, a proponent of the Terminal Patient’s Right to Know Act.

“Some physicians purposefully withhold information about alternatives they find morally objectionable, like palliative sedation,” Coombs Lee said. “Patients should not have to fend for themselves to procure accurate information and expert advice. They should be free to follow their own moral compass, not be trapped by the orthodoxy of their doctor,” Coombs Lee said.

Quality of life near death

In addition to highlighting a lack of end-of-life discussions between physician and patient, the study showed that patients who reported end-of-life conversations were more likely to be referred to hospice earlier, and this was associated with better quality of life near death.

“We believe it provides compelling evidence that planning for the end of life improves a patient’s medical care near death and their caregiver’s bereavement adjustment,” Alexi A. Wright, MD, of the Dana-Farber Cancer Institute, said during the ASCO presentation.

According to the presentation, patients who reported end-of-life discussions were less likely to meet DSM-IV criteria for a mental disorder or to report feeling more depressed, sad, terrified or worried than patients who reported not having an end-of-life conversation.

“Despite physicians’ concerns that end-of-life discussions may cause harm, we found no evidence that they were associated with lasting psychological distress,” Wright said.

At the presentation, Wright said that patients who did not report end-of-life conversations were significantly more likely to undergo ventilation, resuscitation or be admitted to the intensive care unit in their final week of life. The results, according to Wong, suggest that end-of-life discussions have cascading benefits for patients and their caregivers. Patients who reported these discussions were more likely to accept that their illness was terminal and more likely to complete advanced care planning such as a do-not-resuscitate order or a living will.

“It turns out, talking about death won’t kill you,” Coombs Lee said of the study. “Most people hope when death comes it will creep up peacefully while they’re at home in their own bed. Now we know talking about it can help make that happen,” Coombs Lee said.

Study design flaws

Lodovico Balducci

Lodovico Balducci, MD, chief of the senior adult oncology program, Moffit Cancer Center, Tampa, FL, said he feels the study’s numbers do not accurately reflect what he sees in the field.

“At least in our community, oncologists are much more likely to provide the patients with proper information,” Balducci said. “I believe it is very important to understand what the patient understood of the conversation. I believe in telling the patient the truth and consider it a sacred privilege of my profession to have the ability to accompany the patient and his/her family to the ultimate goal line.”

Balducci said he feels the study’s results could be misleading. The Coping with Cancer study assessed the end-of-life discussion by providing the question: “Have you and your doctor discussed any particular wishes about the care you would receive if you were dying?” The response options were “yes” or “no.”

Wright acknowledged at the end of the ASCO presentation that future studies would include longitudinal investigation with repeated assessments of the patient, caregiver and oncologist with independent validation, such as audio taping.

“A serious study should record the conversation that doctors and physicians had, ask open-ended questions and ask both patients and physicians to say their side of the story,” Balducci said.

“It is very possible that only one third of patients did know they had a terminal illness, but that does not mean that physicians did not discuss appropriately the issue with them. Blaming physicians for inadequate patient information is like blaming a history book for the fact that a student did not learn history. Maybe the book could have been more effective, but if the student did not read the book he certainly did not have a chance to learn history,” Balducci said.

“To be even more candid,” Balducci said, “the study seems to prepare the way to another parasitic and costly intrusion in our practice. The last thing we need is to be required to take a course every year on how to talk to patients about their terminal illness, so that a so-called social scientist who has never managed a patient in his/her life can tell us how to take care of the patients for a fee that of course will be very stiff and will further increase the cost of medical care, without changing in any way the outcome.”

Right to Know Act

The Terminal Patient’s Right to Know End-Of-Life Options Act, recently passed by the California Senate Health and Judiciary Committees in late June, would be the first in the nation to provide terminally ill patients with a full disclosure of, and counseling about, all available legal and ethical end-of-life care options.

The act is slated to move to the Senate floor in July or August.

“For the first time ever, in any state, patients can expect their questions will be answered thoroughly and concretely,” Coombs Lee said.

“If their physician is not comfortable having this conversation, this law creates a duty to refer the patient to another knowledgeable professional, willing to speak frankly,” Coombs Lee said.

Not all oncologists are on board with the bill.

“I do not see what this would accomplish,” said Kenneth Micetich, MD, professor of medicine, hematology/oncology at Loyola University. Chicago. “The physician should be skilled in recognizing the dying patient and initiating the discussion. Certainly if the patient asks, the truth is to be told in a kind and empathic manner.

“So we have a law. The patient does not ask — then what? Thus, the law does not really solve the problem,” said Micetich.

“This is one of the most idiotic bills I’ve ever heard about,” said Balducci. “It must have been written by somebody who has never taken care of patients and does not realize the array of unpredictable circumstances that may occur in this context. A physician is expected to always provide complete and honest answers in all circumstances, not only to dying patients.”

“So this request is redundant and it is offensive to assume that physicians do not oblige with this ethical imperative,” Balducci said.

Charlotte D. Jacobs, MD, division of oncology, Stanford Cancer Center, shares similar sentiments.

“I find this a bit deprecating,” Jacobs said. “Do the legislators, most of whom have never practiced medicine, let alone oncology, think they have the expertise to direct physicians in the most sacred of all of our tasks — talking with our patients? This is part of the art of medicine that even after 30 years in oncology, I still don’t think I’ve mastered,” Jacobs said.

“I’d rather see the legislators put their effort on helping us try to cure cancer rather than dictating what we have to say to those who are dying,” Jacobs said.

Patient depression

Many oncologists will admit that there is some concern that a frank discussion about terminal illness and end-of-life care may cause depression in the patient, said Gregory A. Thomas, MD, medical director of the Bridges Pediatric Palliative Care program at Doernbecher Children’s Hospital, Oregon Health & Science University.

“Those concerns about patient depression certainly make some family members reluctant to have the discussion, but as the Dana-Farber study points out, those concerns may not be warranted,” Thomas said.

“One situation that I come across frequently is parents who do not want me to discuss dying with their terminally ill child. They often state it will make the child depressed or want to ‘give up.’ What I tell them is that the child usually knows that they are dying, even if no one is discussing it openly, and that if there is no opportunity for talking about death, the child’s fears may be worse than reality,” Thomas said.

Coombs Lee said that often healthy grief gets confused with pathological depression. “It is normal and healthy to feel sad at the end of life, grieve the impending loss of everything a person holds dear. Avoiding a truthful conversation does not bring hope and comfort; it brings isolation and loneliness. Many patients need honesty to build their last, and greatest, hope — the hope for a humane death and a legacy of dignity and peace to leave their loved ones,” Coombs Lee.

Barbara A. Murphy, MD, who runs the pain and symptom management program at Vanderbilt-Ingram Cancer Center, Nashville, said that the issue is more complex than to merely state that the truth causes depression.

Barbara A. Murphy

“There are family members, patients and health care providers who maintain an ideology that ‘taking away hope’ or providing unfiltered truth is harmful to the patient,” said Murphy.

“There is indeed a small group of patients who fail to accept their prognosis despite honest appraisal by health care providers,” Murphy said. “There are physicians who are paternalistic and do not want to share difficult information with patients. There are also family members who will corner you in the hall and request that you not reveal the truth to their loved ones. The reasons are protean, powerful and deep seeded,” said Murphy. “There is no simple fix.”

Handling the discussion

For many oncologists, end-of-life discussions are the most difficult aspect of the patient/physician relationship. If there is clamoring to have laws initiated to have better dialogue between physician and patient, how should oncologists handle the end-of-life discussions?

“Helping someone through the dying process is like trying to land a plane in a storm — we all hope for a gentle landing, but there are lots of unforeseen currents and bumps along the way,” said Jacobs.

Jacobs said that her method is to remember that every patient is different, and the key is getting to know someone well enough to frame the discussion to best meet his or her needs.

“Some want to know the details of the dying process while others say they don’t want to talk about it,” Jacobs said. “Educational, cultural, religious and economic issues all need to be taken into account. There is no ‘one size fits all.’”

“I have come to realize that many of us want some sort of guideline, preferably the type that fits on an index card that you can put into your lab coat pocket,” Wong said. “We are surrounded by a plethora of self-help books, five-step plans, seven good habits, and the like. The fundamental core of what is actually happening is that you are reaching out to each other as imperfect human beings, trying to help each other get through something very, very difficult,” Wong said.

Thomas stated that he thinks end-of-life discussions should always take place with terminally ill patients but hopes that all these patients had had some discussion of their prognosis at some stage in their treatment and were given some opportunity to think about what they would want to do if the treatment didn’t work.

“One thing I think oncologists could do more of is to talk to patients early in the course of the disease about what the patient’s goals are, not just ‘I want to be cured’, but goals about quality of life. This would make it easier for physicians to recommend the right treatment for that particular patient (eg, attempts at curative treatment vs. symptomatic comfort care) and easier for patients to make decisions about treatments they want based on thoughtful considerations, not unrealistic hopes for a miracle,” Thomas said.

Moving forward

“Please adjust the goals of treatment so you may learn to take pride not only in the absolute length of your patients’ lives but also the quality of their deaths,” Coombs Lee said, given the opportunity to make a plea to the readers of HemOnc Today.

Weinstein said that perhaps under current pressures, physicians try to stay too much on the technical side of the line and need to be better supported to emphasize the human aspect of medicine, to treat the patients as people.

“I am concerned that the art of medicine is being lost,” Weinstein said. “Hospice and palliative medicine specialists are devoted to preserving the art of medicine as well as the science. That reinforces our commitment and our oath to serve humanity and is what makes the practice of medicine profoundly rewarding for me,” Weinstein said.

Wong said that his view is that there’s no “typical” approach, and that there are as many ways of handling end-of-life discussions as there are patients. So the challenge for oncologists is to choose the right way, at the right time, for the right person.

“This means that sometimes you wait for the patient to broach the topic and other times they are waiting for you to take the lead,” said Wong. “I tell all my trainees that at this stage of the therapeutic relationship, there is no pill, there is no IV, there are no tests, there is no diagnostic scan. There is only you. It demands everything of you. Emotions are at a peak, coloring the events as they unfold,” Wong said.

“It is no wonder that the most experienced of us, even with the best intentions, can fail spectacularly,” he said. – by Angelo Milone

How should oncologists handle end-of-life discussions with their patients?

For more information:

• Harrington SE, Smith TJ. The role of chemotherapy at end of life. JAMA. 2008;299:2667-2678.
• Matsuyama R, Reddy S, Smith TJ. Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol. 2006. 24:3490-3496.
• Wright AA, Ray A, Zhang B, et al. Medical care and emotional distress associated with advanced cancer patients’ end-of-life discussions with their physicians. J Clin Oncol. 26:2008. 2008 ASCO Annual Meeting.