New study suggests patients and families make it challenging for health professionals to talk about end-of-life care

A new study published in JAMA Internal Medicine 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.

“Physicians, nurses and medical residents feel that a number of patient and family factors pose significant barriers to discussions about goals of care,” says Dr. John You, a Principal Investigator in the research project. “They 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. 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
-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 or not use life-sustaining treatments such being on a ventilator in certain situations. Reluctance to discuss these details likely reflects understandably high levels of anxiety or even denial about confronting death.

Could advance care planning help?

The study adds to a growing body of evidence that suggests that 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. “We need to better understand the barriers to ACP and what tools are needed to facilitate these conversations — that will have a huge impact on facilitating discussions about goals of care when people are seriously ill.”

Recent polls suggest that 60% 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 (CHPCA) 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.

The 5 steps to Advance Care Planning:

1. THINK about what’s important to you
2. LEARN about different medical procedures and what they can or can’t do
3. DECIDE on a substitute decision maker – someone who is willing and able to speak for you if you can’t speak for yourself
4. TALK about your wishes with your loved ones
5. RECORD your wishes with an advance care plan

-30-

For more information about CHPCA’s Advance Care Planning in Canada Initiative and the Speak Up campaign, please contact: Tamir Virani at 1-800-668-2785 ext. 229 or by email at: Tvirani@bruyere.org.

Tamir Virani
Communications Officer
Canadian Hospice Palliative Care Association

tel: 1-800-668-2785 ext. 229
fax: 1-613-241-3986