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Too Few Patients with Cancer Communicate Preferences for End-of-Life Care

August 10, 2015, by NCI Staff

Family discussing care issues

Many people with cancer are still not discussing their end-of-life care wishes with their loved ones or doctors, according to a new study.

Credit: iStock

Many patients with cancer are not communicating their preferences for end-of-life medical care either through written documents or discussions with loved ones, a new study suggests. The study also found a large increase in the number of people receiving intensive treatment in the last days and weeks of their lives.

The results, published online July 9 in JAMA Oncology, underscore the need for patients to share their end-of-life care wishes before they are too sick to do so, the study authors said.

Near the end of life, many patients with advanced cancer rely on loved ones—as well as legal documents such as living wills and durable power of attorney—to ensure that their medical care reflects their values, goals, and care preferences.

The new study describes trends in the use of advance care planning. Amol K. Narang, M.D., of the Johns Hopkins School of Medicine, and his colleagues analyzed survey data on the use of advance care plans and end-of-life care discussions from nearly 2,000 participants in the prospective Health and Retirement Study who died from cancer between 2000 and 2012.

The Health and Retirement Study includes biennial interviews with a representative sample of Americans who are older than 50 years of age. Within two years of a participant’s death, a study investigator interviews a knowledgeable proxy (often the participant’s next of kin) about the individual’s end-of-life care.

Over the study period, the use of living wills and participation in discussions about end-of-life care did not change significantly among the study population, the researchers found.

By contrast, from 2000 to 2012, the percentage of patients with cancer who designated durable power of attorney privileges to a loved one increased from 52 percent to 74 percent. However, nearly 40 percent of the survey respondents said their loved ones had not discussed end-of-life care preferences with them. And the percentage of patients who received “all care possible” near the end of life rose from 7 percent to 58 percent during the study period.

Assigning durable power of attorney was associated with lower chances of patients dying in the hospital rather than in a hospice facility or their own home. And patients who had a living will and had also engaged in end-of-life discussions were far more likely to have limited treatment at the end of life than those who had neither.

The survey results underscore the need to “find ways that prompt clinicians to have discussions with patients and caregivers about their end-of-life preferences,” Dr. Narang said in a news release.

If a patient’s treatment preferences have not been communicated explicitly, either through writing or discussions, then surrogates “may default to providing all care possible instead of limiting potentially intensive, life-prolonging care,” the researchers noted.

The study had several limitations, including the use of subjective survey questions and the potential for recall errors among respondents to the survey, the study authors noted.

Cancer care in the United States continues to be “intensive, with evidence of increasing rates of hospitalizations, intensive care unit stays, and emergency department visits in the last month of life, along with persistently high rates of terminal hospitalizations, late hospice referrals, and burdensome transitions near death,” the authors wrote.

In the study population, between 20 percent and 25 percent of terminally ill patients with cancer died in the hospital, which is consistent with previous reports.

For patients and families, determining and articulating their values and preferences for end-of-life care can be “a difficult and emotional exercise, sometimes fraught with legalistic elements, and it is often avoided,” noted Michael J. Fisch, M.D., of AIM Specialty Health, in an accompanying editorial. “For many, the task seems daunting and the reward nebulous.”

The path to progress starts with “better communication by proactive, prepared clinician teams,” wrote Dr. Fisch. “Advance directives have inherent limitations and might be regarded as sometimes necessary but rarely sufficient for achieving optimal cancer care toward the end of life for each individual patient.”

The primary focus of health care providers, Dr. Fisch continued, should be “on fostering prognostic awareness, focusing on goals of care rather than specific treatments, and responding to emotions.”

The Institute of Medicine has called for the development of evidence-based standards for clinician-patient communication and advance care planning, which should lead to progress in the field, he noted.

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