Are conversations about end-of-life care distressing to patients? Some physicians and nurses think so, even though there's no good evidence to support this view. In fact, a recent survey of patients with advanced cancer found that rather than doing harm, end-of-life conversations lead to better-quality lives for patients and caregivers, and after such discussions more patients opt for hospice care and less-aggressive treatment.
As part of the Coping with Cancer study, jointly funded by the National Cancer Institute and the National Institute of Mental Health, 332 patients with cancer were surveyed in their final weeks of life. The survey's questions concerned whether they had talked with their physicians about the end-of-life care they wanted to receive, and responses were compared with care they actually did receive (data were obtained from medical records after they died). Interviews with caregivers (usually spouses or adult children) were conducted after the patient's death and about six months later.
About a third of patients recalled discussing end-of-life care with a physician. These patients, compared with those who didn't discuss end-of-life issues, were nearly twice as likely to accept that death was imminent, 1.5 times more likely to enroll in hospice care, somewhat more likely to choose treatments to relieve pain and discomfort than to extend life, and more than twice as likely to have completed a do-not-resuscitate order. Aggressive therapies, such as mechanical ventilation and resuscitation, were seven to eight times more likely to be performed on patients who did not have an end-of-life conversation. Such aggressive medical care diminished the quality of life in these patients, whereas hospice care improved it.
Caregivers whose patients received aggressive care had triple the risk of major depression than those whose patients didn't receive it. And caregivers of patients with higher (better) quality-of-life scores reported less regret and greater ability to face the death than caregivers of patients whose scores were low. The findings suggest that "end-of-life discussions may have cascading benefits for patients and their caregivers," the authors write.
"Nurses are the ones who do the follow-up," although physicians generally initiate end-of-life conversations, says Rose Virani, director of the End-of-Life Nursing Education Consortium (ELNEC) at City of Hope, a cancer center in Duarte, California. After the physician leaves, "patients and families are often in a state of shock. The nurse answers questions, makes sure the patient understands what was said, introduces hospice and palliative care choices, and provides quiet time for patients and caregivers to think."
The study's findings show the importance of nurses' communication skills, Virani says, noting that although nursing schools teach basic skills such as conducting family meetings and breaking bad news, they don't teach specific techniques for use in holding end-of-life discussions. The ELNEC project (www.aacn.nche.edu/elnec) has trained thousands of nurses in end-of-life care since it began in 2000. "We cannot be fearful of our own mortality," Virani says. "Before we can talk with patients about the end of life, we need to accept it ourselves."
Wright AA, et al. JAMA 2008;300(14): 1665–73.