Patients and families state that they value comfort, having time with family and death not being prolonged, but these values often don't align with the treatment they expect at the end of life, according to a new Canadian study.
"Based on our clinical experience and previous research, we had a sense that patients were not well informed about treatment options at the end of life nor grounded in their own values," said lead author Dr. Daren K. Heyland at the Department of Critical Care Medicine of Kingston General Hospital.
Patients need more help clarifying their values and forming informed preferences as a means to making better treatment decisions at the end of life, Heyland said.
"We are saying that when patients express a value of what's important to them, they don't understand how their goals may compete with each other," he told Reuters Health by email.
The researchers surveyed 278 hospitalized patients who were 80 years or older, or had advanced pulmonary, cardiac or liver disease or metastatic cancer, as well as 225 family members.
Questionnaires asked patients or family to rate a series of general end of life values in importance on a scale of 1 to 10, with 10 being the most important.
Patients and family almost universally rated comfort, having time with family, not being attached to machines or tubes, not prolonging death and letting "nature taking its course" as 10 out of 10 in importance.
Other factors like living as long as possible, preserving life and respecting the wishes of other family members regarding one's care tended to score somewhat lower.
Another series of questions addressed their preferred type of end of life care. Almost a third of patients said they preferred "comfort care" and another third preferred full medical care without resuscitation, while only 12 percent wanted full medical care with resuscitation. Answers were similar for family members, according to the results in BMJ Supportive and Palliative Care.
Eight percent of patients and family said they were unsure of their treatment preferences.
"The fact that people have a hard time formulating discrete plans for care that stem naturally from their underlying values is undoubtedly true," said Dr. Scott D. Halpern of the Perelman School of Medicine at the University of Pennsylvania in Philadelphia, who was not part of the new study.
"These are extremely challenging decisions for a whole host of reasons," Halpern told Reuters Health. "We know whether we like vanilla or chocolate ice cream, we've made that choice hundreds or thousands of times, and experienced what it is like to eat vanilla or chocolate. Those of us who fly on airplanes a lot have strong feelings about window versus aisle seats. Future decisions are thereby informed by prior ones."
You can't have experience with end of life decisions until they are happening, Halpern said.
The inconsistencies between stated values and actual preferences in this study may also come from rating values on a scale of 1 to 10, where so many are rated 10, he said - it makes it hard to distinguish between them.
"It would have been more helpful to force people to rank these values," he said. "If everyone wants everything, it's not going to be so useful."
But the study team's conclusion is valid, he said.
"What you want for yourself in terms of how comfortable you are and how long you live may not translate neatly into 'should I get CPR if I need it or not'," Halpern said.
"We need a fair bit more research to really understand how to make considerable and widely accessible improvements in advanced care planning," he said.