Many Cancer Patients Silent About Care at End of Life

Fran Lowry

July 09, 2015

Many more cancer patients are now designating someone to be their power of attorney, although this is not associated with end-of-life care decisions, conclude researchers reporting a national longitudinal survey published online July 9 in JAMA Oncology.

"Many cancer patients never communicate their preferences for end-of-life care prior to death," lead author Amol K. Narang, MD, from Johns Hopkins School of Medicine, Baltimore, Maryland, told Medscape Medical News.

"More cancer patients are assigning durable power of attorney without communicating their end-of-life care preferences, either in the form of a written living will or in the form of a discussion with a loved one, but power of attorney is an ineffective form of end-of-life care planning, and many patients' loved ones may default, providing an all-care-possible end of life," Dr Narang said.

Dr Amol Narang

However, a living will is not the entire solution to the end-of-life care dilemma, says Michael J. Fisch, MD, from AIM Specialty Health, Chicago, Illinois, who wrote an accompanying commentary.

"You need to have been down the road of lived illness and serious illness to really understand all the nuances and complexities that happen in that space," Dr Fisch told Medscape Medical News.

"Talking about having a living will or advanced directives makes sense and is a good idea. But at the end of the day, for things to go well, care needs to be respectful and responsive to individual patients and their preferences, needs, and values. And within the whole context and trajectory of care, things have to be well understood. You may not feel the way you did when you wrote your living will 5 years ago. So a living will is a good starting point for starting a dialogue, but it can be full of complexity," he said.

Trends in Advance Care Planning

For their study, Dr Narang and his team examined trends in advance care planning with durable power of attorney (DPOA) assignment, the creation of living wills, and discussions of end-of-life care preferences.

The researchers analyzed prospectively collected survey data from 1985 respondents who were participants in the Health and Retirement Study (HRS), a nationally representative biennial, longitudinal panel study of US residents older than 50 years.

Most respondents were the next of kin or significant others of patients with cancer who had died between 2000 and 2012.

During the study period, there was a significant increase in DPOA assignment, from 52% to 74% (P = .03).

But there was no significant change in the use of living wills, which went from 49% in 2000 to 40% in 2012 (P = .63).

Nor was there any change in end-of-life discussions, which were reported by 68% of participants in 2000 and 60% of participants in 2012 (P = .62).

Next-of-kin reports that patients receive "all care possible" at the end of life significantly increased during this period, from 7% to 58% (P = .004), and rates of terminal hospitalizations were unchanged (29% in 2000, 27% in 2012; P = .70).

The existence of a living will was associated with limiting or withholding treatment (adjusted odds ratio [AOR], 2.51; 95% confidence interval [CI], 1.53 - 4.11; P < .001) and end- of-life discussions (AOR, 1.93; 95% CI, 1.53 - 3.14; P = .002) but was not linked to DPOA assignment.

"It was surprising to us that people did not have living wills," Dr Narang told Medscape Medical News. "Just assigning a power of attorney did not affect the type of care that they received at the end of life, and this suggests that patients' loved ones may default to providing all care possible at end of life if their loved one has not discussed what they wanted."

"It has been increasingly recognized in the cancer community that advanced care planning initiatives such as living wills and, most importantly, just having a conversation with your loved one, that just doing so is crucial. The median age of the patients in this study was 74, so they were not young. Our expectations were that advanced care planning and use of living wills would increase, but the only form of advanced care planning that did was assignment of power of attorney, which is ineffective," he said.

Dr Fisch added: "Fundamentally, patients need to know, what's happening to me, what's going to happen to me? What can be done to help me?”

"Doctors need to be asking patients what's important to them, what are they hoping for? How do they like to receive information? How much detailed information is helpful to them?" Dr Fisch said. "They [physicians] must really understand and tailor things to their patients. When that kind of practical, flexible individualized care is happening with prepared proactive practice teams working with informed, activated patients, then things go well. And if that's not how things are going, then having a living will isn't going to help that much," he said.

Dr Michael Fisch

Basically, the living will starts the conversation, but not much more.

"For instance, say someone is getting medicines for cancer but early on in the course, there is a big downturn in their illness. I'm not sure what a living will is going to do to help them figure out how to navigate those choppy waters," Dr Fisch said.

"The way forward, as I write in my editorial, begins with better communication by proactive, prepared clinician teams. Advanced directives have inherent limitations and might be regarded as sometimes necessary but rarely sufficient for achieving optimal cancer care toward the end of life for each individual patient," he said.

The study was funded by the National Institutes of Health's National Institute on Aging and the National Cancer Institute. Dr Narang and Dr Fisch report no relevant financial relationships.

JAMA Oncol. Published online July 9, 2015. Abstract, Commentary

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