New research reveals what to discuss near life's end

A study led by a McMaster University researcher has identified the top five things health care teams should discuss with hospitalized patients and their families at the end of life, but the research also found gaps between what patients would like and the care they receive.

In the study published today in CMAJ (Canadian Medical Association Journal), seriously ill hospitalized patients and their families say the most important aspects to discuss are:

• Preferences for care in the event of life-threatening illness
• Patient values
• Prognosis of illness
• Fears or concerns
• Additional questions regarding care.

"However, we found that these elements are infrequently discussed and that concordance between preferred and prescribed goals of care is low," the authors stated.

The researchers asked older patients and their families for their top priorities and discovered that gaps exist between what patients would like and the care that they actually receive.

"Our findings could be used to identify important opportunities to improve end-of-life communication and decision-making in the hospital setting," said Dr. John You, lead author of the study and an associate professor of medicine and clinical epidemiology and biostatistics with McMaster's Michael G. DeGroote School of Medicine. He is also a staff physician for Hamilton Health Sciences.

Current guidelines list 11 key elements for health care providers to discuss regarding end-of-life care. However, these are based mainly on expert opinion and not on patient and family feedback.

A team of researchers with backgrounds in general internal medicine, critical care medicine and palliative care surveyed 233 hospitalized older adults with serious illnesses and 205 family members about the importance of the 11 guideline-recommended elements of end-of-life care. The patients had been admitted to nine hospitals in British Columbia, Alberta, Ontario and Quebec.

Patients reported that of the 11 key elements, an average of only 1.4 had been discussed with the health care team within the first few days of admission to hospital. The more elements of care that physicians discussed with patients, the higher the satisfaction that they and their families reported regarding care received, and the higher the concordance between preferred and prescribed goals of care.

"Our results suggest that concordance between preferences and prescribed goals of care, as well as satisfaction with end-of-life communication, increase with the number of elements discussed," write the authors.

They hope that their findings will help improve end-of-life care for patients in hospital.

The authors previously published a related guide in CMAJ called "Just Ask" to help physicians initiate end-of-life discussions with patients and their families.