Executive Summary

There was a 40% increase in the number of cancer patients designating a durable power of attorney over a 12-year period, but this didn’t impact the rates of aggressive medical care received in the last weeks of life, according to a recent study.

  • Nearly 40% of family members said that patients did not discuss end-of-life preferences with them.
  • Granting power of attorney decreased the odds of terminally ill patients dying in the hospital as opposed to hospice or their home.
  • There was no increase in patients who created a living will or communicated end-of-life care preferences.

Despite a 40% increase in the number of patients with cancer who designated a durable power of attorney, there was no decrease in the rates of aggressive medical care received in the last weeks of life, according to a recent study.1

“The study findings were very surprising to us,” says Amol Narang, MD, the study’s lead author and a radiation oncologist at Johns Hopkins School of Medicine in Baltimore. Researchers used survey data from the University of Michigan’s Health and Retirement Study, which surveys a representative sample of approximately 20,000 Americans over the age of 50 every two years. The researchers analyzed responses from the next of kin of 1,985 participants with cancer who died between 2000 and 2012, about whether patients had signed durable power of attorney documents or living wills or participated in conversations about their end-of life-preferences. The researchers then examined the association between these advance care planning activities and the medical care the cancer patients received at the end of life.

“The oncology community has long recognized that the type of care that cancer patients receive before dying is often overly aggressive and inconsistent with patients’ preferences,” explains Narang.

Advance directives have been endorsed as an important part of care by all major cancer-related professional societies. “As such, we figured that the prevalence of advance directives amongst patients dying of cancer would have increased over the study period,” says Narang. Instead, the researchers found that important forms of advance care planning, such as creating a living will or communicating one’s preferences for end-of-life care to loved ones, had not increased. Other key findings include the following:

  • Nearly 40% of family members said patients did not discuss end-of-life preferences with them.

“Most of these patients likely recognized that they had a terminal condition much before death, and so 40% is too high,” says Narang.

  • Granting power of attorney decreased the odds of terminally ill patients dying in the hospital as opposed to hospice or their home, but was not associated with treatment limitations.

This suggests that assigning a durable power of attorney is likely not an effective form of advance care planning, if patients haven’t communicated their preferences for end-of-life care to that individual.

“While this can be a difficult conversation, it is one that has to happen,” says Narang. “It’s much better for this conversation to take place in a controlled environment than in an urgent, hospital-based setting.”

  • There was no difference in use of aggressive end-of-life care for cancer patients who did not have a durable power of attorney, and those whose durable power of attorney lacked written or oral information about their loved one’s preferences.

This finding highlights the importance of engaging patients and their families in advance care planning in ways that are more substantive than merely appointing a durable power of attorney, says Lauren Hersch Nicholas, PhD, one of the study’s authors and assistant professor of health policy and management at Johns Hopkins Bloomberg School of Public Health.

“Hospital bioethicists can play an important role in catalyzing meetings with patients and their families early in the treatment process, so that family members are prepared when treatment decisions need to be made,” says Nicholas.

Clear recommendations needed

One often-overlooked factor is the reluctance of providers to make clear recommendations about what types of treatments are reasonable and appropriate under the circumstances, according to Robert D. Truog, MD, Frances Glessner Lee professor of medical ethics, anaesthesiology, and pediatrics and director of the Center for Bioethics at Harvard Medical School in Boston.

“Too often, clinicians assume that, if the patient does not have an advance directive, they are obligated to pursue life-sustaining treatments at all cost,” says Truog. “This is not true.”

Rather, he says, in the absence of a clear directive from the patient, clinicians and the family should work together to decide what is best for the patient. “Caregivers have an ethical obligation to tell the family what they think would be most reasonable and appropriate given the patient’s condition and prognosis, as well as known values and preferences,” adds Truog.

One reason why patients receive curative treatments in the final stages of illness is that both physicians and patients avoid discussions about palliative care options. “It feels contrary to treatment plans,” explains John Carney, MEd, president and CEO of the Center for Practical Bioethics in Kansas City, MO. “No one has told the patient that the curative treatment efforts have failed them, rather than the patient ‘failing’ the treatment.”

Patients will likely take into account disease burden, other life-limiting conditions and illnesses, and the perceived effectiveness of past and current treatment. “Patients want their providers asking about their well-being, not just physical health status,” says Carney. “The more reluctant physicians are in addressing the non-physical aspects of care, the more complicated the dance steps become.”

Carney says bioethicists and palliative care professionals need to impress upon patients, families, caregivers, and providers the importance of goals of care discussions. Such discussions “can be great tools for exploring the impact of current treatment regimens on day-to-day quality of life, independence, and functional status,” he explains.

Carney recommends providers explore areas of life that are most meaningful to patients, instead of focusing solely on the patient’s physical experience of the illness. “This can go a long way in reframing goals of care,” he says.

Encouraging patients to explore all options is part of the provider’s commitment to promote autonomy and ensure informed consent, says Carney. “Battlefield metaphors fail miserably when our only frame of reference in altering the treatment plan is viewed as ‘surrender’ and ‘defeat,’” he says. He suggests providers instead use terms such as “next phase of the journey.”

“This allows the patient to devote energy on ‘life-completion’ tasks facilitated by palliative care, rather than solely on the work of recovery burdened by unwanted or ineffective treatment,” says Carney.

Each patient, spiritually and culturally, will have a different approach to end-of-life decision-making, says Robert Wergin, MD, president of the Leawood, KS-based American Academy of Family Physicians. “Our job as physicians, particularly family physicians, is to keep patients as functional as possible and minimize symptoms as much as possible,” he says. Part of the physician’s role, as early as possible in the stage of illness, is to ask patients what they want to do if they reach a point where they can’t make decisions regarding their care. “Sometimes the advance planning process falls on me,” Wergin says.

Wergin often sees advance planning documents that are not specific enough in terms of what providers need to do clinically as disease progresses, however. “It may say ‘no heroic life-sustaining treatments,’ but what does that mean? Does the patient want not to be put on a ventilator, no feeding tubes, no IV, no antibiotics?” he asks. Wergin recommends that his patients living with advanced illness complete Physician Orders for Life-Sustaining Treatment (POLST) forms, relying on the strong bonds he’s established as a family physician in rural Nebraska. “Having a continuous relationship with the patient, and often their family members, gives us an ‘in’ to begin these discussions,” he says.

REFERENCE

  1. Narang AK, Wright AA, Nicholas LH. Trends in advance care planning in patients with cancer: Results from a national longitudinal survey. JAMA Oncol 2015; 1(5):601-608.

SOURCES

  • John Carney, President/CEO, Center for Practical Bioethics, Kansas City, MO. Phone: (816) 221-1100. Fax: (816) 221-2002. Email: JCarney@practicalbioethics.org.
  • Amol Narang, MD, Fellow, Radiation Oncology and Molecular Radiation Sciences, School of Medicine, Johns Hopkins University, Baltimore. Phone: (410) 955-7390. Email: anarang2@jhmi.edu.
  • Lauren Hersch Nicholas, PhD, Assistant Professor, Health Policy & Management, Johns Hopkins School of Public Health, Baltimore. Phone: (443) 287-5680. Email: lauren.nicholas@jhu.edu.
  • Robert D. Truog, MD, Professor of Medical Ethics, Anaesthesiology & Pediatrics, Harvard Medical School, Boston, MA. Email: Robert_Truog@hms.harvard.edu.