A gap between doctors' goals and patients' wishes may mean seriously ill patients are receiving aggressive forms of treatment that they don't actually want at the end of their lives, according to a new study.
The study, published in the Canadian Medical Association Journal on Monday, surveyed 233 older patients who were at risk of dying within the next six months, and 205 family members. These patients were from nine acute-care hospitals – not palliative-care facilities – in British Columbia, Alberta, Ontario and Quebec. It found patients' preferences for life-sustaining treatment and the orders that hospital teams gave about their resuscitation status were in agreement in only 30 per cent of cases.
In some instances, even though patients told researchers they did not want to be kept alive by artificial means, the orders written on their charts called for aggressive treatments, including cardiopulmonary resuscitation at all costs. In others, patients wanted health-care providers to switch to focusing on their comfort if they showed no signs of improvement, yet the prescribed orders were to provide full medical care.
"The concern is that should something have happened to them in hospital, the likelihood is that they wouldn't have received what they wanted," said Dr. John You, the lead author of the study and an associate professor at McMaster University's Michael G. DeGroote School of Medicine, noting that patients generally preferred a less intensive approach than was prescribed. "The implications are that there may be people who are at risk of receiving invasive treatments at the end of life that they, in fact, wouldn't have wanted."
At issue is the researchers' finding that health-care providers seldom talk to patients about their care as patients face the end of their lives. While patients said the most important issues were preferences for care, prognosis, the values that influence their decision-making, and fears or concerns, the researchers found health-care providers infrequently discussed these issues with their patients.
The study did not address the issue of physician-assisted death, but highlighted the concerns patients have about being able to make decisions around dying in comfort. The researchers noted that even though a previous study found 80 per cent of older, seriously ill patients prefer less aggressive care that focused on providing comfort at the end of their lives, dying, in Canada, "is often an in-hospital, technology-laden experience."
The issue of whether to allow patients to end their lives with the help of physicians has been a hot topic in recent months, with Quebec poised to implement Bill 52 and the Supreme Court of Canada deciding if it will allow terminally ill Canadians the right to physician-assisted death. And in the United States, Brittany Maynard, a 29-year-old with brain cancer who became an advocate for assisted death, ended her own life this week, taking advantage of Oregon's Death With Dignity Act (while making the point that she was not suicidal, but wanted to die on her own terms).
In Canada, there are no formalized guidelines for talking to patients about end-of-life care, in part because each case is highly individual, You said. However, he noted that the current best practices set out by health-care organizations are largely based on expert opinion, rather than the input of patients and family members themselves.
He and his fellow researchers asked patients and family members to rate a list of 11 key elements to end-of-life communication and decision-making. Those elements were compiled from recommendations used by organizations in Britain and Australia, as well as Cancer Care Ontario, and involved such items as "offer a time to meet to discuss goals of care," and "provide information about outcomes, benefits and risks of life-sustaining treatments."
Patients reported they had discussed fewer than two of the 11 key elements with their medical team since being admitted to hospital. Less than 10 per cent said they had a discussion about their prognosis, and only 21.5 per cent were asked about their preferences for care in the event of life-threatening illness.
Dr. John You said there are many reasons these conversations do not happen.
"The culture of hospitals is much more oriented to life-saving, which is completely understandable, but that does sometimes get in the way of these other important conversations," You said. "And generally when patients come to the hospital, the reflex is to activate everything and do as much as you can. … Sometimes the automatic, do-everything pathway isn't what we always need to do."
In the busy hospital setting, medical teams may simply not have the time, while physicians may feel uncomfortable initiating the discussion or handling patients' and family members' emotions.
To address the latter problem, You and his colleagues published a conversation guide in the CMAJ in April, titled "Just ask," which offered practical advice for health-care workers on how to broach the subject of end-of-life care. Among the pointers: To arrange for privacy when setting up an interview and to consider involving a nurse, trainee or other colleague who had developed a relationship with the patient. It also recommended asking patients how they perceived their own medical situations, with questions such as "What have you been told about your medical situation so far?" and "What are your thoughts about the future?" before determining how much information they wanted.
As his study emphasizes, You said, health-care providers need to give patients and families an opportunity to voice their preferences and concerns. "As doctors, in meeting with families and even in conversations with patients, I think we tend to talk too much and not listen enough."