Rebecca Sudore’s years of experience as a geriatrician, hospice physician, advocate for the elderly and caregiver for her own grandparents has taught her one thing: making end-of-life decisions is one of the toughest and most complicated challenges faced by patients and their caregivers. “A great deal of my job involves talking to patients and family members about end-of-life care and I have found that advance directives are one part of a much larger puzzle, made even more difficult by health literacy issues, existing advance directive laws and poor communication between physicians and patients,” explained Sudore, an M.D. and a VA Fellow 2009-2012 in the Robert Wood Johnson Foundation (RWJF) Physician Faculty Scholar program.
In keeping with RWJF’s long tradition of exploring compassionate, effective solutions to end-of-life care dilemmas, Sudore decided to take on these issues as her scholar project. “The RWJF program has provided me with exceptional mentors. This support really helped me to work through many methodological issues regarding my research. I’ve also received guidance in pursuing additional funding,” Sudore said.
Helping Patients, Families & Physicians
The most basic issue facing many people attempting to make end-of-life plans is language. “The mean reading level of U.S. adults has been shown to be at the 8th grade level. For U.S. adults ages 65 and older, the mean reading level is only at the 5th grade level, which may reflect additional problems with cognitive impairment among this age group. Yet most advance directives are written at a 12th grade level,” said Sudore, who is also an assistant professor of medicine at the University of California, San Francisco School of Medicine. “I have seen people check the box that says: ‘I do not want life-sustaining treatments’ without fully understanding what that means.”
Acknowledging that advance directives (primarily living wills) are only one part of the planning process, Sudore and her team decided to explore a full range of issues with the traditional models for assessing end-of-life treatments, along with the communication and decision-making difficulties faced by patient's and their surrogates. They published their findings in the thought piece, “Redefining the Planning in Advance Care Planning: Preparing for End-of-Life Decision Making,” in the August 17, 2010 issue of the Annals of Internal Medicine. The primary recommendation made by Sudore and her colleagues was that rather than asking patients to make premature decisions about life prolonging treatments, advance care planning should focus on preparing patients and their surrogates to work with clinicians to make “the best, possible in-the-moment medical decisions.”
Sudore also suggests that patients choose an appropriate surrogate decision-maker, but ensure that person knows and agrees to play the role. “Research shows that half the time, the surrogate doesn’t know that they were even chosen to make these momentous end-of-life decisions on someone else’s behalf,” Sudore explained. “Patients, surrogates and physicians should also explicitly discuss leeway in medical decision making, because patients values and preferences are likely to change over time," she added. To address these issues and others, Sudore is creating an advance care planning intervention that will produce concrete examples of language that patients and surrogates can use to talk to one another and to their physicians. The intervention will be tested in a randomized, controlled trial.
New Research—Assessing Law—Changing Policy
While pursuing her initial research, Sudore also found that even when patients and caregivers did their best to prepare for these tough decisions, state advance directive laws made it difficult—in some cases nearly impossible—for them to carry out their wishes. Her latest research, “Lost in Translation: The Unintended Consequences of Advance Directive Law on Clinical Care,” published in the January 18, 2011 issue of the Annals of Internal Medicine, offers one of the most comprehensive analyses to date of the legal restrictions patients face. Sudore and her co-authors reviewed the medical and legal literature and identified five primary ways that advance directive law interferes with patients’ wishes:
- As mentioned in her first study, readability is an issue because most state advance directives are written above a 12th grade level and are often not available in a patient’s native language.
- Surrogate restrictions often prohibit a patient’s care providers, such as a case manager, from acting as a surrogate. While this restriction is meant as a safeguard, it may interfere with a patient’s preferences, especially if she or he is isolated and has no one to name as an acceptable surrogate.
- In order to create a legally valid document, Sudore and her co-authors point out that “patients must navigate a myriad of execution requirements, such as obtaining witness signatures, having a document notarized and requiring advance directive documents to be in writing.”
- If a patient does create an advance directive, it does not guarantee that it will be accepted and followed in a state different than the one in which it was executed— a potential problem for elderly people who may live with several caregivers and for transient homeless people.
- Religious and cultural concerns may not be recognized.
Sudore explains that “in an attempt to safeguard patient autonomy, legal restrictions have rendered advance directives less clinically useful. I recommend improving the readability of advance directives, allowing for the use of oral advance directives, lifting restrictions on who may act as a surrogate and eliminating witness/notary requirements in order to help restore the clinical effectiveness of advance directives and ensure that all patients’ wishes are heard and honored.”
The Robert Wood Johnson Foundation Physician Faculty Scholars program provides research opportunities for junior physician faculty members through mentoring, protected time, networking and the opportunity to gain valuable research experience. The program produces academic leaders who are creative and well-positioned to improve the nation’s health and health care.