When Is the Right Time to Talk About Death?

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by Patrick Zweidler-McKay, M.D., Ph.D., Children's Cancer Hospital

zweidler_mckay_small.jpgIn a recent study published in the journal Cancer, more than 4,000 oncologists were surveyed to find out what they would discuss with their patients regarding end-of-life issues. When asked how they would approach a patient who was feeling well, but likely only had four to six months to live, nearly two-thirds of the oncologists said they would talk to their patient about his or her prognosis. However, at that point, most would not discuss hospice or where the patient wanted to die.

Many oncologists said that they would wait until the patient felt worse or when there were no more cancer treatments to offer. But younger physicians indicated they were more likely to have these discussions early. Some guidelines recommend these discussions should be introduced for all terminally ill patients with less than one year to live.

An opinion piece in The New York Times, "Facing End-of-Life Talks, Doctors Choose to Wait," brings the difficulty of this issue into focus. One physician with personal experience said that having end-of-life discussions too early was not welcome. However, the lead author of the study and others disagree.

Those in favor of early discussions regarding end-of-life care feel that patients and families have the right to know about these issues, so they can make the most informed decisions for their care. Others argue that such discussions are depressing and can take hope away from patients. And don't forget that end-of-life discussions are not easy for oncologists, who deal with it every day.

One study of 332 cancer patients, though, found that such discussions were not associated with higher rates of major depression or more "worry." Instead, they were strongly associated with lower rates of intubation, resuscitation and intensive care unit admission, based on the wishes of the patient (Journal of American Medical Association, Oct. 8, 2008).

In reality, each patient's circumstance is different and it's very hard to know the right time to have these discussions. On top of this, in pediatric oncology, we have to find the right time for both the family and our young patients. It's often different based on the child's age, comprehension, coping skills and the parents' wishes.

At the Children's Cancer Hospital at M. D. Anderson, we believe the only answer is better support and communication. To enable families, patients and health care providers to have open communication and the support of all available Children's Cancer Hospital resources, we have formed a Supportive Care Committee, which includes family members of current and former patients.

The multidisciplinary Pediatric Supportive Care Team, which this group created, not only deals with end-of-life issues but also any stressful situation such as coping with the diagnosis of cancer, management of symptoms or a visit to the ICU. This gives us an early opportunity to open lines of communication.

Having families at the core of this committee is both inspiring and essential to our understanding of the family perspective. Only through this understanding can we provide the support and communication that is right for each patient and family.

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