Families urged to talk about end-of-life care

Refusal to accept death can result in unnecessary suffering: doctors

Seriously ill, hospitalized Canadians are increasingly receiving aggressive, invasive and futile care at end of life because patients and families cannot accept the grim reality that they are dying, according to more than 1,200 doctors and nurses surveyed from across the country.

Unrealistic expectations about life-prolonging treatments and disagreements among family members are also preventing crucial discussions around the use — or not — of CPR, artificial ventilators, tube-feeding and other interventions from happening, according to the survey.

“If we don’t have these conversations, there is a chance of patients receiving care that in the end is going to inflict more suffering than help,” said Dr. John You, lead author of the study and an associate professor of medicine and clinical epidemiology and biostatistics with McMaster University’s Michael G. DeGroote School of Medicine in Hamilton.

Victoria-based physician David Attwell led development of the Doctors of B.C.’s advance care planning policy. He said it is important for people to have those conversations long before crises happen.

“One of the biggest problems that people have is talking about death and dying. It’s not just patients and families. It’s also physicians.”

“We’re in the business of making people healthy and giving them hope, and so a lot of people — a lot of physicians — have fear that they’ll take away a patients’ hope if they bring up the whole idea of death and dying,” said Attwell.

The study, published Monday in JAMA Internal Medicine, involved a survey of 1,256 staff doctors, residents and nurses working in medical teaching units at 13 hospitals in B.C., Alberta, Ontario, Quebec and Newfoundl and and Labrador between September 2012 and March 2013.

The questionnaire began with a vignette of a 70-year-old patient with a flare-up of chronic obstructive pulmonary disease, or COPD.

The man is housebound, on oxygen, and needs others to help provide almost all care for him.

Respondents were asked to rate the most important barriers that would prevent them from engaging the patient or his family in end-of-life discussions around goals of care — particularly around the use of life-sustaining, or death-prolonging, treatments.

The three biggest barriers identified by all three groups were difficulty accepting a loved one’s poor prognosis, difficulty understanding the limitations and risks of life-sustaining interventions and lack of agreement among family members about goals of care.

Atwell said once people are incapable of making their own care decisions that stress is passed on to family members.

“If those discussions haven’t taken place, there’s a fair bit of conflict, confusion and ... potentially guilt associated with the decisions that they make if they don’t have direction from the person.”

The survey builds on an earlier study by You and his colleagues from the Canadian Researchers at End-of-Life Network (CARENET) who interviewed elderly patients in a dozen Canadian hospitals who were at high risk of dying in the next six months.

Only about half had discussed their wishes around end-of-life care with a member of their health care team.

Only a minority wanted CPR.

But when the researchers looked at the actual “code status” on their charts, many were “full code” — meaning CPR and every other possible measure would be used to try to resuscitate them.

You said the new survey highlights the “sometimes high, but understandable levels of anxiety and denial experienced by seriously ill, hospitalized patients and their families.”