Advance directives and health care proxies: Equally effective in influencing doctors’ decisions
Advance directives and proxy opinions are equally effective in influencing doctors’ decisions, but having both has the strongest effect, says a 2014 study.
• Advance care planning and regular care planning are starting to merge
• Meaningful use criteria require only an answer to the question of whether the patient has an advance care plan, not the actual plan itself.
• "Big data" have the potential to offer more accurate prognostic estimates.
Advance directives and proxy opinions are equally effective in influencing doctors’ decisions, but having both has the strongest effect, says a 2014 study.1
"Compared with no information about the patient’s preferences, having some indication of their preferences made a really big difference for physicians in their decision about whether to press on versus allowing the patient to die more gently," says Harold C. Sox, MD, MACP, professor of medicine emeritus at Geisel School of Medicine at Dartmouth in Hanover, NH.
Sox points to the 1995 SUPPORT study that explored the effectiveness of communication about patients’ preferences for end-of-life treatment for intensive care unit patients with a poor prognosis.2 In that large, multi-site, randomized trial, a comprehensive intervention did not affect physicians’ knowledge of seriously ill patients’ wishes for end-of-life care, nor the frequency of discussing preferences for cardiopulmonary resuscitation.
"The question is, what happens in real life? Has there been any real progress since the SUPPORT study?" says Sox.
A 2008 review concluded that there was strong-to-moderate evidence to support interventions to improve important aspects of end-of-life care.3 "Maybe there has been a little progress, but it’s probably a pretty good bet that things haven’t gotten much better," says Sox. "The question is why — where are the breakdowns?"
Merge with regular care planning
Advance care planning and regular care planning are starting to merge, says Joanne Lynn, MD, MA, MS, director of the Center for Elder Care and Advanced Illness at Altarum Institute in Washington, DC.
"We are moving into an era where many, many patients have a lot of things going on and they really need a comprehensive care plan," says Lynn, also a former professor of medicine at Dartmouth College and at George Washington University.
"Once you start doing comprehensive care planning, then advance care planning just becomes part of it," says Lynn. In talking about how the patient wants to live as the disabilities or illnesses get worse, it follows that the provider will ask where the patient wants to be when he or she dies, and what kinds of treatments he or she wants.
"It becomes natural to be asking questions about how you want to live your last few months or minutes," says Lynn. "More and more people are dealing with the issue, whether they fill out a formal form or not."
One obstacle is that the "meaningful use" criteria established by the Centers for Medicare & Medicaid Services (CMS) requires only an answer to the question of whether the patient has an advance care plan, not the actual plan itself. "To me, that seems to be a bad idea. If you know that the person has an advance plan, but you don’t know what it says, in some ways you are in worse shape," says Lynn.
Vendors typically don’t include this in electronic medical records because it’s not required and hospitals aren’t requesting it, she explains. "Even a place to scan it in so you have the person’s signature would be a good thing," says Lynn. "Summarizing whether the person wants to avoid hospitalization or resuscitation would also be good."
Lynn says that meaningful use criteria need to be updated to include a statement about the patient’s prognosis, not just for survival but also for function, as CMS’ Continuity Assessment Record and Evaluation (CARE) instrument does.4 This ensures that the patients and family at least know the general outline of what they face while making decisions, she adds.
"We have a ways to go," says Lynn. "But as it becomes more commonplace for people to die at home or in nursing homes, it will be more common for people to state their preferences."
Big data will offer prognostic estimates
Lynn expects that in the near future, "big data" will offer prognostic estimates that are much more accurate than individual doctors currently offer.
"In an era where Angie’s List can give you comments from 100 people about how good a plumber is, surely we will get to the point where a family member of a person who has just had a stroke can say, I’d really like to know how people do who have had a similar stroke two years ago,’" says Lynn.
Data will be able to answer such questions as how many of these individuals had to live in a nursing home, details on their functional status, and the best outcomes of a group of 100 people who had a similar stroke, for instance.
"Imagine the difference in advance care planning if you knew that only two out of 20 people did well, 10 died within three months, and all the rest are living with substantial disabilities requiring constant attendance in nursing home or at home," says Lynn. A person could also learn how many of the individuals who had a similar stroke are living independently.
"There’s no reason why we can’t start answering these questions," says Lynn. "We just haven’t set up [systems] to do it yet."
- Escher M, Perneger TV, Rudaz S, et al. Impact of advance directives and a health care proxy on doctors’ decisions: A randomized trial. J Pain Symptom Manage 2014;47(1):1-11.
- Teno JM, Licks S, Lynn J. Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc. 1997;45(4):508-512.
- Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: A systematic review. Ann Intern Med. 2008;148:147-159.
- Care Item Set and B-Care. http://cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Post-Acute-Care-Quality-Initiatives/CARE-Item-Set-and-B-CARE.html.
- Joanne Lynn, MD, MS, MS, Director, Center for Elder Care and Advanced Illness, Altarum Institute, Washington, DC. Phone: (202) 776-5109. E-mail: [email protected]
- Harold C. Sox, MD, MACP. Professor of Medicine Emeritus, Geisel School of Medicine at Dartmouth, Hanover, NH. E-mail: [email protected]