By Seema Gupta, MD, MSPH
Clinical Assistant Professor, Department of Family and Community Health, Joan C. Edwards School of Medicine, Marshall University, Huntington, WV
Dr. Gupta reports no financial relationships relevant to this field of study.
SYNOPSIS: In a systematic review of 795,909 people in 150 studies, researchers found many Americans have not completed an advance directive.
SOURCE: Yadav KN, Gabler NB, Cooney E, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff (Millwood) 2017;36:1244-1251.
Advance care planning (ACP) is a continual process of preparing for future medical care in case patients are unable to make their own decisions. It includes engaging patients and families to reflect on patients’ personal goals, values, and belief systems, which ultimately translate into informing medical care. This process helps prepare the patient for current and future decisions regarding medical treatment. Data show that Americans have fallen behind on this process. For example, a survey revealed that although many people say they would prefer to die at home, only about one in three American adults have created an advance directive expressing their wishes for end-of-life care.1 Only 28% of home healthcare patients, 65% of nursing home residents, and 88% of hospice care patients have created an advance directive.2 Data show that among severely or terminally ill patients, < 50% have an advance directive. As many as three-quarters of physicians whose patients had an advance directive were not even aware that it existed.3 In fact, studies have shown that in ICU patients, as few as 17% of patients possessed advance directives.4 As components of ACP, advance directives such as durable power of attorney for healthcare and living will ensure patients receive the care that is consistent with their wishes while significantly improving multiple outcomes in patients with serious medical conditions. Additionally, ACP improves communication for shared decision-making while reducing the level of anxiety in family members during times of high stress.
Yadav et al conducted a systematic review of the data on the prevalence of advance directives among U.S. adults collected between 2011 and 2016 to determine how many Americans had advance directives, both overall and specifically among people most likely to benefit from them, and how advance directive completion rates have changed over time. Researchers included 795,909 Americans who were part of 150 different studies. Approximately 63.6% were female, 65.1% were white, 80.6% were ≥ 65 years of age, and 62.7% were in a nursing home. The meta-analyses revealed completion proportions of 29.3% (95% confidence interval [CI], 25.0-34.0%) for living wills, 33.4% (95% CI, 29.5-37.6%) for healthcare powers of attorney, and 32.2% (95% CI, 27.2-37.7%) for undefined advance directives. Patients ≥ 65 years of age exhibited a significantly greater completion percentage of any advance directive (45.6%; 95% CI, 40.6-50.8%) compared to younger adults (31.6%; 95% CI, 28.4-35.0%; P < 0.001). There was a significant difference in any advance directive completion by patient type (P < 0.001), with the highest rates among patients in hospice or palliative care (59.6%; 95% CI, 41.8-75.1%) and nursing home patients (50.1%; 95% CI, 42.1-58.2%).
Using advance directives to plan for the end of life is viewed as a public health issue. Not only does this prevent unnecessary suffering and anxiety among families, but it can reduce unwanted and expensive treatment. However, as the research by Yadav et al demonstrated, the prevalence of advance directives remains low and stagnant. Recognizing a challenge in the field, effective Jan. 1, 2016, Medicare made the decision to reimburse physicians for ACP counseling. As Americans continue to live longer, many more are surviving with one or more chronic diseases and experience substantial disability before dying. For instance, 70% of Americans die of a chronic disease, and about 62% of all deaths each year are caused by five chronic diseases: cancer, COPD, diabetes, heart disease, and stroke. However, to ensure that more patients are able to create updated advance directives, it is critical to reduce the barriers to ACP. This includes increasing awareness among patients and their family members, and addressing denial about death and dying where it may exist. A discussion about palliative care, which may involve end-of-life care much earlier in a person’s disease process, could help avoid the confusion while maintaining quality of life at the end of life. Finally, as physicians, we must recognize the cultural differences within our patients that result in certain patients’ lower usage of hospice services and ACP, with the resultant increased likelihood of dying in hospital as well as use of intensive care and life-sustaining treatments.5
- Pew Research Center. Strong public support for right to die. More Americans discussing — and planning — end-of-life treatment, Jan. 5, 2006. Available at: http://pewrsr.ch/1hcXoqp. Accessed Aug. 3, 2017.
- Jones AL, Moss AJ, Harris-Kojetin LD. Use of advance directives in long-term care populations. NCHS Data Brief; No 54. Hyattsville, MD: National Center for Health Statistics, 2011. Available at: http://bit.ly/2fc5HMr. Accessed Aug. 3, 2017.
- Kass-Bartelmes BL. U.S. Agency for Healthcare Research and Quality. Advance care planning: Preferences for care at the end of life. Research in Action; Issue 12, 2003. Available at:
http://bit.ly/2wp0l46. Accessed Aug. 3, 2017.
- Van Scoy LJ, Sherman M. Factors affecting code status in a university hospital intensive care unit. Death Stud 2013;37:768-781.
- Barnato AE, Herndon MB, Anthony DL, et al. Are regional variations in end-of-life care intensity explained by patient preferences? A study of the US Medicare population. Med Care 2007;45:386-393.