End-of-life talk betters patients’ remaining time
Discussion reduces stress for families
Patients are dying technology-laden deaths, hooked up to machines, tubes and monitors, because doctors aren’t sparing the time to talk to them about what care they would or would not want at the end of life, according to the authors of a new guide for physicians on advance care planning.
The guide encourages physicians in hospitals to identify patients at high risk of dying and to have full, frank and meaningful conversations about life-prolonging interventions, including CPR, which, for the sickest patients in real-world intensive care units, is nothing like the sanitized versions depicted on TV medical dramas.
Of the few people who survive in-hospital CPR, “most will have substantially diminished function,” and end up dependent on others for daily support, or discharged to a hospice or nursing home.
“CPR was invented to restart the hearts of otherwise healthy people who are having heart attacks. The people who developed it — I don’t think they could ever have envisioned that CPR would be the norm and the default treatment for anyone who is essentially dying,” says Dr. John You, an associate professor at Hamilton’s McMaster University and a member of the Canadian Researchers at the End of Life Network.
Canada’s population is aging and older people are living longer with chronic diseases, making endof-life care discussions even more relevant.
But doctors and other health-care workers in hos-
There may be some reluctance to accept that patients are actually going to die DR. JOHN YOU
pital “infrequently engage patients and families in such conversations,” You and his co-authors write in this week’s edition of the Canadian Medical Association Journal.
As a result, “patients kind of get put on an automatic default care pathway, where the assumption is, because we have a lot of technology we should use, we can use it and so we will use it,” You, a general internist, said in an interview.
Those technologies can save lives. But, “for a good proportion of patients, just because we can do it doesn’t it mean it’s the kind of care we would necessarily want,” he said.
“Where we let patients and families down is that we just don’t spare the time to really talk with them and understand what their wishes are and what their values are, just to make sure that we’re honouring what they want.”
Doctors receive little training in medical school around end-of-life conversations with terminally sick patients, You said. “I think the biggest problem is that we just don’t ask, and we just don’t initiate these conversations.”
Doctors also tend to overestimate their patients’ life expectancies by as much as 430 per cent.
“To me, it speaks to human optimism,” You said. “I just think we are hardwired to be overly optimistic. (Doctors) went into medical school to save people’s lives. There may be some reluctance to accept that patients are actually going to die.”
In a recent study, You and colleagues interviewed elderly patients in a dozen Canadian hospitals who were at high risk of dying in the next six months. “What we found was striking,” You said.
Only about half the patients had discussed their wishes around end-of-life care with a member of the health-care team. Only a minority wanted CPR. But when researchers looked at the actual “code status” on their charts, many were recorded as “full code” — meaning CPR and every other possible measure would be used to try to resuscitate them. “That, to me, shouldn’t really be happening,” You said.
“My hope is that by having (endof-life care) conversations we can really provide the care that patients and families want, and not subject them to things they wouldn’t have wanted,” You said.
The guide recommends doctors begin by identifying patients at high risk of dying by asking a simple question: “Would I be surprised if this patient died in the next year?” The guide provides suggested questions and comments to help steer doctors through end-of-life care discussions, such as, “Did this situation make you think about states of being that would be so unacceptable to you that you would consider them to be worse than death?”
The patient’s wishes should be clearly documented in their medical record, the authors write.
For patients with advance directives — legal documents that set out the treatments the person would accept or reject should they ever lose the capacity to consent to, or refuse a treatment — the process can be straightforward. But polls suggest the majority of Canadians don’t have advance directives, and fewer than half have discussed the issue with their families.
Advance care planning can increase the quality of life of dying patients, reduce the costs of futile care and lead to less depression among family members, experts say.
“Everyone tries to see things in the best possible light,” You said. “People are trying to be hopeful for the best possible outcome. To acknowledge death and dying, you sometimes feel like you’re painting a negative picture. But the reality is, we’re all going to die one day.”