A couple of Vancouver doctors are hoping to get patients talking to their family doctors about something that isn't easy to discuss — their wishes surrounding end-of-life care and issues around do-not-resuscitate, or DNR, directives in particular.

Dr. Claire Robinson says that when she was in training, she would often notice that patients who came to the hospital in acute distress had never previously discussed their wishes with family members or a health-care provider. 

'I think that their research is probably right on the money when it comes to patients and families wanting the physicians to initiate that conversation.' — Thomas Foreman, director of clinical and organizational ethics, Ottawa Hospital

"If they are in acute distress, they are often in a terminal illness or sometimes they're incompetent to make their own decisions," she said in an interview.

"It just adds so much stress to an already very stressful situation, not just for the patient but for all of their family and for caregivers. And oftentimes, when someone is in distress, families often have conflicting wishes as well. So it just creates tons of turmoil."

Robinson, along with Dr. Sharlene Kolesar, gave a presentation on the subject recently at the annual meeting of the College of Family Physicians of Canada, held in Vancouver.

They were armed with data from a survey they conducted last year of patients at four family practice offices in Vancouver. Out of 429 surveys, 386 were completed by the patients and returned.

"Our major surprise was that 86 per cent wanted to talk about it with their family doctors, but that only eight per cent had done so," Robinson said.

"So that highlights a need that we're not fulfilling, we haven't thought to fulfil."

Seventy-two per cent said they'd like to talk about the subject with a family member (respondents were allowed multiple responses).

Kolesar said the researchers thought the high response rate indicated that "people must be quite keen to have this discussion."

But she believes end-of-life discussions are often too stressful for patients, and that this constitutes a barrier for many doctors to initiate the discussion because they don't want to cause their patients distress.

"But we found in this study that only 15 per cent found the topic stressful," Kolesar said.

Overall, 84 per cent of respondents were at least familiar with DNR directives, she said.

Bedside discussions

DNR forms instruct hospital staff not to attempt to revive a patient whose heart has stopped when it would take invasive and continuous medical treatment to keep the person alive. They are signed by medical personnel only if there's no reasonable likelihood that a patient would recover from an illness or injury.

Robinson said that most people want to have the DNR discussion in an outpatient setting before a crisis situation arises, and only 11 per cent of respondents wanted to talk about it while in hospital.

"In real life, that's where the majority of these discussions occur is at the bedside in hospital when the patient is seriously ill, when it has to be discussed," she said.

It's hoped that the study's findings will bring about change and trigger some physicians to become passionate about the topic, and not be afraid to initiate DNR discussions, she added.

Thomas Foreman, director of clinical and organizational ethics at The Ottawa Hospital, welcomed any attention brought to the topic.

"I think that their research is probably right on the money when it comes to patients and families wanting the physicians to initiate that conversation," he said.

Discussions around end-of-life care are emotionally laden, he said. Parents want to shield their adult children, and likewise adult children want to protect their elderly parents from thinking about death.

"So you have this catch-22. Who starts the difficult conversation?" he asked.

"And I think for the most part, the general public concedes that it's the physician, your family physician, as opposed to a specialist in emergency or critical care that you don't have an established relationship with."

It may be more beneficial to have a conversation with the patient and family members about the patient's values in life, such as whether he or she values quantity of life over quality of life, while appreciating the nuances, Foreman said.