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Advanced care planning rates increase modestly among patients with cancer
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The use of advanced care planning among patients with cancer increased modestly between 2000 and 2012, according to an analysis of prospectively collected survey data.
A significant increase in the designation of a durable power of attorney accounted for most of the increase. Researchers observed no significant changes in use of end-of-life discussions or living wills.
“Advance care planning may prevent end-of-life care that is non-beneficial and discordant with patient wishes,” Amol K. Narang, MD, resident in the department of radiation oncology and molecular radiation sciences at Johns Hopkins Hospital in Baltimore, and colleagues wrote. “Despite long-standing recognition of the merits of advanced care planning in oncology, it’s unclear whether participation in advanced care planning by patients with cancer has increased over time.”
Narang and colleagues evaluated trends in advanced care planning and end-of-life treatment intensity among patients with cancer who participated in the Health and Retirement Study, a panel survey in which interviews were conducted with more than 26,000 U.S. residents aged older than 50 years and their spouses.
After the death of a study participant, a proxy — typically next of kin — answers questions about end-of-life and medical care. The response rates for these “exit” exceed 85% since 2000.
The analysis by Narang and colleagues relied on “exit” interviews conducted by 1,985 next-of-kin surrogates of Health and Retirement Study participants with cancer who died between 2000 and 2012. The proxies included spouses or partners (43%), children (38%), siblings (5%), or other relatives or friends (14%).
The median time from death to “exit” interview was 12 months (range, 1-36).
Results showed 81% of decedents had engaged in at least one form of advanced care planning — 48% had a living will, 58% had designated a power of attorney and 62% had discussions with their surrogates about their preferences for end-of-life care.
The rate with which study participants designated a power of attorney increased significantly during the study period, rising from 52% in 2000 to 74% in 2012 (P = .03). However, researchers reported no significant changes during the study period in use of living wills or end-of-life discussions.
Researchers also reported no significant changes in the percentage of decedents who had terminal hospitalizations, or had treatments limited or withheld at end of life.
The percentage of surrogates who reported their decedents received “all care possible” at end of life increased from 7% in 2000 to 58% in 2012 (P = .004).
Narang and colleagues observed a significant association between creation of al living will and the likelihood that treatments would be limited or withheld at the end of life (adjusted OR = 2.51; 95% CI, 1.53-4.11). Likewise, having end-of-life discussions appeared significantly associated with limited or withheld treatments at end of life (adjusted OR = 1.93; 95% CI, 1.53-3.14).
“Although associated with reduced end-of-life treatment intensity, key advanced care planning domains are not being increasingly utilized, highlighting the need for new measures to bolster their adoption,” Narang and colleagues wrote.
Researchers acknowledged their study could be limited given they obtained information on advanced care planning and end-of-life treatment decisions from surrogates, and because the findings could be subject to biases on the part of proxies, including recall bias and social desirability.
The findings could be evidence of a negative trend, Charles R. Thomas Jr., MD, professor and chair of the department of radiation medicine at Oregon Health and Science University and deputy editor of JAMA Oncology — the journal in which the study was published — wrote in an editor’s note.
“[Narang and colleagues] suggest that an unintended scenario may be evolving in which the increasing use of power of attorney may be associated with patients relinquishing their opportunity to communicate end-of-life and living will care preferences,” Thomas wrote. “Hence, patients are de facto forcing surrogates who are granted power of attorney to make decisions in a communication vacuum.”
The results demonstrate the need for better communication, not just between patients and their surrogates, but also with clinicians and their palliative care teams, Michael J. Fisch, MD, MPH, FACP, FAAHPM, medical director of medical oncology programs at AIM Specialty Health, wrote in an accompanying editorial.
“The way forward begins with better communication by proactive, prepared clinician teams,” Fisch wrote. “Advance 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. The primary focus of providers should be on fostering prognostic awareness, focusing on goals of care rather than specific treatments, and responding to emotions. This mirrors the practical, flexible, and individualized approach of master clinicians working as part of effective, properly resourced teams.” – by Anthony SanFilippo
Perspective
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Christine A. Zawistowski, MD
Narang and colleagues report their findings of trends of advanced care planning (ACP) in a cohort of deceased cancer patients over a 12-year period. The authors looked at the use of durable power of attorney (DPOA), living wills and end-of-life (EOL) care preferences discussions prior to death. Over the 12-year period, the use of DPOA increased significantly, but there was no significant change in the use of living wills or EOL care discussions. Per surrogate report, there was a significant increase in the deceased receiving “all care possible” at the end of life. These findings are similar to previously published data even though there is evidence that aggressive EOL interventions may not be associated with better quality of life, and adult patients who recognize they are dying usually do not wish to receive aggressive EOL interventions. However, the authors did find a correlation between the presence of living wills and EOL care discussions with a higher likelihood of limiting or withholding treatments at the end of life. This leads one to wonder why findings for adults with DPOA — another form of ACP — were not similar. It might be that assigning a DPOA does not necessarily mean that the parties involved have had a discussion about what EOL care should look like for that person. Perhaps the individual assigning a DPOA feels the person they assign knows them well enough to know what they would want. And conversely, perhaps the surrogate decision-maker feels he needs to “do everything” if the person did not make their wishes explicit. And herein lies the crux of the problem and an area to investigate for the solution — the communication gap. In the meantime, there are tools available (Five Wishes, Respecting Choices, POLST) to help with these conversations. Electronic health record systems can be configured with prompts to aid providers in identifying patients who may die in the next 6 months as a cue to have discussions and inquire about living wills. Practitioners can encourage their patients to have their health care proxy be present in the office/hospital at key points in care — recurrence, new metastases, signs of treatment failure, etc — when discussions about their preferences may occur. Focusing on goals of care and responding to the strong emotions these discussions raise will help strengthen the partnership between the health care team and patient and their proxy. By investigating and working towards closing this communication gap, clinicians can help ensure that their patients receive the care they want to receive at the end of life.
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