Experience with end-of-life care makes advance care planning more likely
Older individuals who have experience with end-of-life care of others demonstrate greater readiness to participate in advance care planning, according to a recent study.1
Of 304 participants, 84% had one or more personal experiences or experience with others. This was associated with greater readiness to complete a living will and health care proxy, discuss life-sustaining treatment with loved ones, and discuss quantity versus quality of life with loved ones and with physicians.
Halima Amjad, MD, MPH, the study’s lead author, was surprised that personal experiences with serious illness or surgery were not associated with increasing readiness to engage in most forms of advance care planning. Amjad is a post-doctoral fellow at Johns Hopkins University School of Medicine’s Division of Geriatric Medicine and Gerontology in Baltimore, MD.
"Intuitively, it would make sense that for an older adult, having his or her own personal illness experience might lead to reflection on end-of-life care and outlining or discussing what treatments would or would not be accepted," she says. However, it was the end-of-life experiences with others that were associated with greater readiness to participate in advance care planning rather than personal experiences. "Actually witnessing end-of-life care and decision-making may be more important than an older individual’s own illness experience," says Amjad.
Another surprising finding was that knowing someone who had a bad death due to too little medical care was associated with greater readiness to complete a living will and/or health care proxy, and to discuss life-sustaining treatment and quantity versus quality of life with loved ones.
In contrast, knowing someone who had a bad death due to too much medical care was associated with increased readiness for only one of six advance care planning behaviors — discussing quantity versus quality of life with a physician.
"We typically think of advance care planning as a way to limit unwanted interventions at the end of life, so this finding was the opposite of what we expected," says Amjad.
It was unclear whether participants felt that loved ones died with uncontrolled symptoms, and therefore received too little medical care, or if they were motivated to specify life-sustaining treatments they would accept at the end of life.
"For bioethicists often grappling with difficult end-of-life issues, advance care planning can address some of the most pressing questions and allow individuals to make their wishes known when they cannot speak for themselves," says Amjad. "It is unfortunately still underused." She says the study’s findings have these implications for bioethicists:
• In discussing advance care planning and end-of-life care with individuals, a discussion of their previous experiences with loved ones, rather than focusing on personal illnesses, may be more productive.
• Recognition that individuals without prior end-of-life experiences with others may be less ready to engage in advance care planning can help tailor these important discussions to each individual and his or her stage of readiness.
• Bioethicists can promote advance care planning with other providers who may be interacting with older patients and conducting end-of-life care discussions, including health care providers, social workers, and chaplains.
These providers should be encouraged to step back, reflect with the older patient on end-of-life experiences he or she has had with others, and assess how ready the individual is to engage in different forms of advance care planning, advises Amjad.
"Rather than using a generic script or starting with discussion of the patient’s own health experiences, this approach may lead to a more individualized and fruitful discussion on extremely important issues," she concludes.
- Amjad H, Towle V, Fried T. Association of experience with illness and end-of-life care with advance care planning in older adults. Journal of the American Geriatrics Society 2014. doi: 10.1111/jgs.12894.
- Halima Amjad, MD, MPH, Division of Geriatric Medicine and Gerontology, Johns Hopkins University School of Medicine, Baltimore, MD. Phone: (215) 896-2534. E-mail: email@example.com.