Reluctance to talk about end-of-life care

Advance care planning can result in more positive experiences for patients, families and health professionals

A study published in JAMA Internal Medicine earlier this year identifies significant barriers to discussions about care for seriously ill patients in Canadian hospitals.

The study, conducted with 1,256 clinicians at 13 hospitals in five provinces, suggests that patient and family factors are a major contributor to a lack of important conversations about end-of-life care.

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"They (physicians, nurses and medical residents) perceive that family members often have difficulty accepting a loved one's poor prognosis, and that they had difficulty understanding how certain treatments may positively or negatively affect their care," says Dr. John You, a principal investigator in the research project.

"That makes it challenging to have conversations or make decisions about treatment."

The top three barriers identified by health professionals were family members' difficulty accepting loved one's poor prognosis, family members' difficulty understanding limitations/complications of life-sustaining therapies and lack of agreement among family members about the goals of care.

Goals of care is a term used to describe discussions between clinicians, patients and family members to establish a plan of care in a hospital setting. For example, deciding whether to use life-sustaining treatments such as a ventilator in certain situations. Reluctance to discuss these details likely reflects understandably high levels of anxiety or even denial about confronting death.

The study adds to a growing body of evidence that suggests health care teams and individuals need guidance to steer them through these important discussions, as well as tools that normalize conversations when people are still healthy.

Dr. You believes that advance care planning, a process of communicating your wishes for future care and naming a substitute decision maker who can speak for you if you cannot, could provide an excellent first step.

"Advance care planning, which ideally happens well before you are seriously ill, can result in more positive end-of-life experiences for patients, families and health professionals," says Dr. You.

Recent polls suggest 60 per cent of Canadians want to have advance care planning conversations with their doctors, however a large number of health professionals don't feel equipped to have these important discussions.

In order to have effective discussions about this topic, clinicians need to be highly skilled communicators; this will require better training and tools/conversation guides for clinicians.

Two new studies are currently underway to develop and test tools for both advance care planning and goals of care discussions in both primary care and acute

care settings.

The Canadian Hospice Palliative Care Association's Advance Care Planning in Canada

Initiative also has a number of advance care planning tools for individuals, family members and health professionals at www.advancecareplanning.

ca. The tools are free to download, and include workbooks, videos, conversation starters and wallet cards.

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