Talking about death is never easy.
It’s a difficult topic to approach with patients who are aging in hospitals or living with chronic illnesses.
An end-of-life “conversation guide” endorsed by the Canadian Researchers at the End of Life Network and published in the Canadian Medical Association Journal offers steps that doctors in hospitals can follow to sensitively broach the subject with patients and their families.
Family doctors and consultant physicians may discuss advance-care planning in outpatient settings. This guide aims to make the conversation more routine for hospital physicians as well, since family members (who may later become substitute decision-makers) are usually present. As well the exchange is more relevant because the patient is in hospital.
“A lot of the patients I care for are seriously ill and in fragile health and my observation has been that as a health care team we don’t spend that time to understand what their priorities are. I think it’s an important gap that we need to close,” Dr. John You, one of the authors of the guide and an associate professor at McMaster’s Departments of Medicine and Clinical Epidemiology and Biostatistics, said.
The guide offers advice for physicians on when to start talking about long-term planning. For example, doctors can use the “surprise” question to gauge the appropriate time to discuss options: “Will they be surprised if the patient dies within a year?” The guide says if the answer is “no,” then an end-of-care discussion should be started.
Once a physician has decided to speak with a patient, there is advice on how to set up the interview, such as asking the patient who else they would like there.
Doctors are also encouraged to consider involving a colleague such as a nurse in the discussion, and to make the patient as comfortable as possible by sitting down and making eye contact with them.
Dr. You said there isn’t a lot of specific training for medical students on how to have these conversations.
“The medical culture is for very good reasons focused on cures and saving lives and getting people better, so acknowledging that we all die one day is not necessarily the first thing that we want to do,” he said. “But that’s reality; we’re all mortal. We’re all going to die one day.”
The guide points out that some patients may not be interested in discussing end of life care. In this situation, it suggests sensitively gauging that by asking the patient, “Are you the sort of person who wants to hear all the details of your medical condition?”
Those who are not interested in knowing all the details should have their views respected.
“Clinicians should exercise judgment and flexibility in engaging patients and family members in these discussions, recognizing that determining goals of care is a process. For patients who have existing advance directives, this process may be straightforward; for others who may be less prepared, the discussion may best unfold in a phased approach, with initial introduction and probing of this issue early during the stay in hospital and more detailed follow up later on,” the authors write.
“It needs to be handled with sensitivity and it does take some actual training to be a good communicator,” You said.
Physicians are encouraged to talk about the patient’s goals of care including prognosis, the patient’s values, and the risks and expected outcomes of life-sustaining treatments. All of those decisions made by the patient should be documented in their medical record for easy access afterward.
The guide also suggests families work with patients to determine their views on life-sustaining measures such as CPR. You said there is a misunderstanding of what CPR can do because of its popularity in movies and television. In reality, it can do a lot of harm and is only useful in rescuing patients from sudden death, which is the least common end-of-life trajectory (five per cent of all deaths).
The study’s authors conclude that there should be a push to increase public awareness outside of the hospital about the limitations of life-sustaining technologies as well as the importance of advance care planning.