Most Americans lack advance directives — but they also report concerns about end-of-life care
Bioethicists must "speak up and speak loudly"
Executive Summary
Only 26% of 7946 adults surveyed had an advance directive, according to a recent study. Lack of awareness was the most frequently reported reason for not having an advance directive. Most participants reported concerns about end-of-life care. Bioethicists can consider:
- Establishing educational partnerships with community long-term care facilities.
- Avoiding assumptions that providers are aware of the components and advantages of advance care planning.
- Making the long-term care community aware of their availability to consult pre-transfer.
In a 2014 survey of more than 7946 adults, only about one-fourth (26%) had an advance directive.1 "Our study provides information from a large sample of adults on their attitudes and behaviors regarding advance directives," says Lynda A. Anderson, PhD, one of the study's authors and director of the Centers for Disease Control and Prevention's Healthy Aging Program.
The most frequently reported reason for not having an advance directive was lack of awareness. Here are other findings:
- Advance directive completion was associated with older age, more education, and higher income, and was less frequent among non-white respondents.
- Respondents with advance directives were more likely to report having a chronic disease and a regular source of care.
- The majority (68%) of study participants reported having concerns about end-of-life care, including concerns about the costs of the care, the pain they might experience, or their comfort and dignity. Another 19% reported no end-of-life concerns, and 14% responded that they did not know if they had end-of-life concerns. Those who responded they "did not know" if they had an end-of-life concern were less likely to have an advance directive.
"People who lack the knowledge to have end-of-life concerns, or about the role of advance directives in facilitating end-of-life decisions, may represent important audiences for intervention," says Anderson. - Older adults were more likely to have an advance directive, but only 29% of those aged 55 to 65, and about half (51%) of those 65 or older, indicated having an advance directive.
"Given the current discussions about implementing various models of health care delivery, including the patient-centered medical home, end-of-life issues need to come to the forefront of planning efforts," underscores Jaya K. Rao, MD, the study's lead author. At the time the work was performed, Rao was an associate professor in the Division of Pharmaceutical Outcomes and Policy at University of North Carolina's Eshelman School of Pharmacy.
"Hopefully, these findings will contribute to the current national conversations about end-of-life care," says Rao.
Efforts have "fallen short"
Questions about end-of-life care often seem to occur to seriously ill patients and families "as if out of the blue," says F. Keith Stirewalt, PA, MBA, MDiv, advance care planning coordinator and bioethics committee member at Wake Forest Baptist Medical Center in Winston-Salem, NC. "And we scratch our heads and exclaim, 'How could they not have known?'"
Stirewalt says that despite decades of attention, "attempts to emphasize the 'advance' descriptor in the terms 'advance care planning' and 'advance directive' have fallen short."
There is a need to "normalize" advance planning conversations in order to reduce end-of-life angst for family, patients, and medical caregivers alike, argues Stirewalt. "What we have failed to accomplish is the normalization of advance care planning as discussed in the living room, rather than the side of the sick bed," he says.
Purposeful conversations that incorporate advance directives and Physician Orders for Life-Sustaining Treatment (POLST) documentation at the time of admission allow for advance care planning to be "woven into a greater tapestry of goals of care," says Stirewalt. "Partnership between the patient and family, the long-term care facility, and the referring health care provider(s) are crucial." He says bioethics consultants should consider:
- Proactively reaching out to community long-term care facilities, rather than waiting for the patient to return to the hospital as a future consult.
- Defining the components and advantages of advance care planning. "No assumptions should be made that all know the basics, or agree about their advantages and uses," he says.
- Emphasizing to the long-term care community their availability to consult pre-transfer.
"As a neutral source, the bioethics committee can facilitate communication with the patient and family within the creation of a safe space," says Stirewalt.
Conflicts at the bedside may be avoided through educational leadership, community involvement, and the setting of realistic expectations for treatment and end-of-life care. "Certainly, bioethical quandaries will not end," says Stirewalt. "They may, however, be alleviated."
Move to values-based model
The Affordable Care Act (ACA) has the potential to improve end-of-life care, in part because it is transitioning away from a fee-for-service model to a values-based model, says Ira Byock, MD, a professor at Geisel School of Medicine at Dartmouth University in Hanover, NH. Byock is author of The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life (Avery, 2012).
"This means providers just can't keep ordering tests and new treatments when there is no evidence that they are actually helpful," he says. Byock says that the comparative effectiveness research that the ACA advances will promote measurement of meaningful outcomes, including the patient's well-being during late-stage illness.
Byock says too many people are still at high risk for dying in ways they would not have wanted to die. "They are often suffering as they die, in ways that are often avoidable," he says. "We haven't hardly budged the number of people getting late-stage treatment in intensive care units."
Byock argues that "all of us, including bioethicists, have to take a step back and acknowledge that we are failing. If we stay silent or are too meek, we are complicit." The time for incremental improvements in care and the way people die has passed, he underscores.
"We really need to be honest — firstly, with our own disciplines — but most importantly, with the patients and families who come to us for help," says Byock. "So many of them are not getting the best possible care we can provide."
Inadequate palliative care
While many hospitals claim to have palliative care programs, this is often somewhat misleading. "Health care centers must not be allowed to keep stating to the public that they are providing state-of-the-art cancer or cardiac care when they cannot reliably provide palliative care," says Byock. "It is unethical for them to do so."
Byock says that bioethicists must "speak up, and speak loudly" within their own institutions, and state that this needs to become a new standard of care.
"There is now really good clinical research that shows that concurrent models of disease treatment with palliative care clearly improve quality of life, often improve survival, and as an unintended consequence, actually diminish total health care costs," says Byock.2
Some hospital CEOs and CFOs don't believe that palliative care is cost-effective. "That's now clearly shown to be wrong, but it is a common prevailing attitude," says Byock. Similarly, some clinical leaders of cancer centers and cardiac care have the misconception that palliative care requires people to give up treatment for their disease.
"All of us who are practicing medicine or providing bioethics consultations need to realize that it's not okay for our institution to be a late adopter here," says Byock. "If a clinical leader or CEO continues to hold attitudes that have become anachronistic, we have to speak up!"
References
- Rao JK, Anderson LA, Lin FC, et al. Completion of advance directives among U.S. consumers. Am J Prev Med 2014; 46(1):65-70.
- Smith S, Brick A, O'Hara S, et al. Evidence on the cost and cost-effectiveness of palliative care: A literature review. Palliative Med 2014;28(2):130-150.
SOURCES/RESOURCES
- Lynda A. Anderson, PhD, Director, Healthy Aging Program, Centers for Disease Control and Prevention, Atlanta, GA. E-mail: [email protected].
- Ira Byock, MD, Professor, Geisel School of Medicine, Dartmouth University, Hanover, NH. Phone: (603) 667-7598. E-mail: [email protected].
- F. Keith Stirewalt, PA, MBA, MDiv, Advance Care Planning Coordinator, Wake Forest Baptist Medical Center, Winston-Salem, NC. Phone: (336) 716-5811. E-mail: [email protected].
- The Centers for Disease Control and Prevention offers a free online course, Advance Care Planning: An Introduction for Public Health and Aging Services Professionals, to prepare public health and aging services professionals to assist individuals with advance care planning. For a course description, go to : http://1.usa.gov/1kHMqgZ.
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