Although many older patients in Canada have thought about end-of-life care and discussed it with family members, a new study suggests fewer have spoken with doctors and had their wishes noted accurately in their medical record.
Many elderly people prefer to die at home instead of in the hospital - but that's not always the way it works out, researchers said.
Dr. Daren Heyland from Kingston General Hospital in Ontario said a lack of discussion about patients' wishes is often what leads to very aggressive care at the end of life, followed by stress and regret from family members.
"These are 80-year-old patients who are frail, sick, in hospitals, and so they've obviously considered their end-of-life situation," Heyland, who led the new study, told Reuters Health.
"The real problem is the failure of the health care team to engage them."
One recent U.S. study found an increase between 2000 and 2009 in the proportion of people admitted to the intensive care unit in the month before they died. And although use of hospice care seemed to be increasing, dying patients were often transferred only for their last few days of life.
To gauge whether patients' wishes for end-of-life care were clear and known to everyone involved, the researchers interviewed 278 sick, elderly patients who were in the hospital and expected to live less than six months and 225 family members. The interviews were conducted at 12 hospitals across Canada.
About three-quarters of the patients said they had thought about end-of-life care before being hospitalized, and the majority of them had discussed their goals for care with a family member.
But most patients also said they had not discussed how much time they had left with their doctor or been asked about any earlier end-of-life talks when admitted to the hospital this time around.
Even when people's wishes were noted in their medical records, two-thirds of the time those notes differed from what patients and their family members expressed during interviews.
People typically preferred less aggressive treatment than what was recorded, Heyland and his colleagues reported Monday in JAMA Internal Medicine.
"That to me is a huge and alarming problem, that an 80-year-old patient says, ‘When it comes to the final stages of life, just focus on keeping me comfortable,' and on their medical record, they're up for full resuscitative practices," Heyland said.
Dr. Mary Tinetti, chief of geriatrics at the Yale University School of Medicine in New Haven, Connecticut, said the findings aren't all troubling.
"I was heartened by what a high percentage of people actually had discussed preferences," Tinetti, who wasn't involved in the new study, told Reuters Health. "Patients really are beginning to feel comfortable having those conversations, at least with their family."
She said it's hard to tell just how different patients' and families' real preferences were from what was noted in medical records, based on this study alone.
"In any of these kinds of surveys, the way the question gets asked is really key," she said.
Still, Tinetti said the findings do echo recent research suggesting talking to patients on a regular basis about their end-of-life wishes should be considered part of routine care. And patients shouldn't be afraid to bring up those issues on their own, she added.
"Because they're the ones that are most affected by the treatment results, they should really feel comfortable and feel it is appropriate that they raise it with their clinicians," Tinetti said.
"It is important that they open their mouths and adequately communicate their wishes and request or ensure that they get documented appropriately in whatever medical record the facility has for them," he said.