April 5, 2013: Discussing end of life plans with family members isn’t a guarantee your wishes will be followed. Canadian research, published in the Journal of the American Medical Association (JAMA), shows that despite expressing their wishes to family members, fewer older Canadians discuss plans with their doctor, and when they do, the plans are rarely noted accurately in the medical record. The study found when patients did express wishes to their doctor, two-thirds of the time the medical record did not accurately reflect patient wishes.

The study concludes that “many elderly patients at high risk of dying and their family members have expressed preferences for medical treatments at the EOL (end-of- life). However, communication with health care professionals and documentation of these preferences remains inadequate. Efforts to reduce this significant medical error of omission are warranted.” The lead researcher, Dr. Daren Heyland of Kingston General Hospital in Ontario, said that “the real problem is the failure of the health care team to engage them.”

Participants in the study, which was conducted at 12 acute care hospitals across Canada, included 278 patients and 225 family members. The study found that “before hospitalization, most patients (76.3%) had thought about EOL care, and only 11.9% preferred life-prolonging care; 47.9% of patients had completed an advance care plan, and 73.3% had formally named a surrogate decision maker for health care. Of patients who had discussed their wishes, only 30.3% had done so with the family physician and 55.3% with any member of the health care team. Agreement between patients’ expressed preferences for EOL care and documentation in the medical record was 30.2%. Family members’ perspectives were similar to those of patients.

The study finds that three quarters of elderly patients had talked to their families about end-of-life issues, while among CARP members polled in February 2013, this figure was 61%.

CARP polling on the subject of EOL care, however, confirms the study’s general finding. CARP members for the most part have not discussed end-of-life issues with their doctors either but have done so with their families. In each case the main topics of conversation were DNRs and treatment choices at the end of life.

Getting the End-of-Life Care You Want

Getting the care you want at the end of life may prove to be out of patients’ hands. The reported difference in patient wishes and medical records shows that people typically expressed a preference for less aggressive treatment than was recorded by doctors, the study found.  Only 11.9% of patients in the study wanted life-prolonging care.

“That to me is a huge and alarming problem, that an 80-year-old patient says, ‘When it comes to the final stages of life, just focus on keeping me comfortable,’ and on their medical record, they’re up for full resuscitative practices,” Dr. Heyland told reporters. The study speaks to the growing need in Canada for comprehensive end-of-life care, especially for a system that accepts and respects patients’ wishes.

It should come as little surprise that in 2010, Canada was ranked ninth out of 40 countries on a list of best places in the world for end-of-life care. One of the main reasons that Canada ranked relatively low on the list, tied with the United States, is that Canadians, our doctors and politicians are afraid to talk openly about death and end-of-life issues. Until the national conversation progresses, however, it may prove difficult to have it your way at the end of life.

Read more about Canada’s Quality of Death Ranking

Read CARP’s Member survey on advanced directives and end-of-life care