At the end of life, most chronically ill older adults experience some level of physical discomfort, restricted mobility, and cognitive impairment. Incapacitated patients who have not previously made statements or formal arrangements outlining their treatment preferences may receive unwanted or costly medical care or the withdrawal of treatments they may have desired. When individuals fail to state—formally or informally—their wishes regarding the medical care they want to receive or avoid at end of life, this decision-making burden often falls upon the shoulders of distressed family members who may have no awareness of the patient’s preferences or who may disagree with one another about the patient’s care. As a result, both financial and emotional burdens can arise.
To alleviate the associated burdens of making end-of-life plans on behalf of another, practices have been established to enable patients to formally state their medical care preferences when they are still cognitively able. The 1990 Patient Self-Determination Act requires that federally funded hospitals and nursing homes give patients the opportunity to complete advance directives (ADs). An AD is a living will and requires legally naming a durable power of attorney for health care (DPAHC). Living wills are legal documents that specify the medical treatments a person desires. A DPAHC is a named individual given legal authorization to make health care decisions for another individual, should they become incapacitated. Although helpful in many cases, these advance directives have their limitations due to the variability that exists regarding how thorough a patient is when stating their treatment preferences or due to complications surrounding accessibility of ADs when quick decisions must be made. For additional insurance, health care professionals urge patients to also convey their treatment preferences to significant others via informal conversations. Regardless, only one-third to one-half of all adults in the United States has ADs. Much research considers factors that impact the likelihood of having ADs; however, no known studies exist examining the impact of a significant others’ “death quality” on advance care planning.
In response to this dearth of research, Deborah Carr of Rutgers University recently conducted a study examining the impact that negative or positive experiences surrounding a loved one’s death have on an individual’s likelihood of making advance care plans. Dr. Carr examined these associations utilizing data from the New Jersey End of Life study. This survey included a sample of 305 adults age 55 or older seeking care at two major New Jersey medical centers. Additionally, Dr. Carr examined the qualitative responses of 138 survey respondents who reported that they had done advance care planning and were subsequently asked to explain their reasons for doing so. Results demonstrated “positive” role model effects. That is, individuals who witnessed significant others’ deaths at home were free of problems associated with end-of-life care and were more likely to make informal or formal end-of-line plans where advance directives were used. The qualitative data showed that 19 percent of those respondents who had done advance care planning did so based on the recent death experiences of loved ones that they wished to either emulate or avoid. Most cited negative aspects of death—pain, connection to machines, coma—as responsible for triggering their own advance care planning.
As a result of her findings, Dr. Carr argues the importance of advocating for advance care planning among older adults. In 2011, an attempt to increase rates of formal advance care planning among U.S. citizens was thwarted by Congress when proposed Medicare coverage of one doctor-patient advance care planning consultation session was eliminated from the proposed Patient Protection and Affordable Care Act due to unsubstantiated claims that such consultations would encourage euthanasia and “death panels.” Dr. Carr argues that reinstating this benefit would potentially increase rates of advance care planning and provide older adult patients the opportunity to make educated and informed decisions about their medical treatment preferences at end of life. She further suggests that practitioners working with terminally ill older adults engage them in discussions about the aspects of loved ones’ deaths they found either distressing or comforting. Focusing on concrete experiences rather than abstract scenarios about end of life may yield more effective discussions and planning among patients and their health care professionals, resulting in better quality death experiences.