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Whether in one’s prime or approaching the golden years, many of us will face a hospitalization at least once in our lifetime. According to a Centers for Disease Control and Prevention (CDC) report in 2010, there were 35.1 million people discharged from hospitals after a 4.8 day average length of stay. In cases where people know they will be admitted, there is time to make known their wishes regarding treatment or end-of-life decisions. (1) But in emergencies, for both the young and old, without medical directives hospitals talk with next of kin -- even if that person is not a loved one. A team of Yale researchers in an April report documented their concern.
The definition of next of kin in most states means a blood relative or a spouse. And yet, oftentimes those we love, those for whom we are most grateful for being in our lives, are excluded from making health care decisions for us. Researchers at Yale in a study published last month in JAMA found a growing number of patients do not list relatives as next of kin, but rather members within their non-nuclear family. However, there is some question as to whether or not states will honor such wishes. Since state laws differ, there can be a delay when it comes to making a critical medical decision.
Yale postdoctoral fellow Dr. Andrew B. Cohen and colleagues pointed out:
“Even though an increasing number of adults are unmarried and live alone, state default surrogate consent statutes vary in their recognition of important relationships beyond the nuclear family, such as friends, more distant relatives, and intimate relationships outside marriage.” (2)
The at-risk elderly and the “unbefriended”
The situation for the elderly can be dire. While the rates of admission for the elderly seem to have been dropping slightly, a CDC data brief noted that “adults aged 85 and over were less likely than those aged 65–74 and 75–84 to be discharged home and more likely to die in the hospital.” And who makes decisions for them?
Thaddeus Mason Pope, J.D., Ph.D. noted in the New England Journal of Medicine’s Perspectives in 2013:
"People who are decisionally incapacitated but haven't provided advance directives for their health care and have no health care surrogates — sometimes called the 'unbefriended' or 'unrepresented' — are some of the most powerless and marginalized members of society. Most of the unrepresented are elderly, homeless, mentally disabled, or socially alienated. Yet medical decision making for these vulnerable patients often lacks even minimally sufficient safeguards and protections. Consequently, health care decisions made on their behalf are at risk of being biased, arbitrary, corrupt, or careless.” (3)
Solutions for any adult still carry a stress risk
Although the Yale study review was comprised of an examination of 109,803 veterans collected at the Veterans Health Administration, it is a wake-up call for all those who have no health care directives in place. For approximately 7 percent next of kin listed were outside of the nuclear unit.
It is also important to keep in mind that those who make the medical decisions for loved ones face the burden of decision-making stress. Oftentimes people find themselves stressed by second-guessing their own decisions.
As the AMA News pointed out:
"Surrogate decision-makers can be haunted by lingering doubts about whether they made the right choices for family members or may feel guilty about those decisions, research shows. Surrogates often feel anxious and depressed, and are at significant risk for posttraumatic stress disorder. . . And the distress is slow to fade." (4)
The Yale team found that non-nuclear family contacts included same-sex partners, common law spouses, and even “live-in-soul mate” as their next of kin. What we once defined as the family unit – husband, wife, and child – is changing and, as such, may become challenging for medical decision makers and patients.
How can this be resolved?
Health care advance directives are legal documents of which the two basic kinds are living wills and durable powers of attorney for health care. The decision-making process is difficult especially when there are siblings involved as each may have a different interpretation of a parent's wishes. Even a medical directive can be viewed in different ways. The crucial question becomes, “What if?” when people are hoping for a miracle.
Cohen raised the suggestion of uniformity in every state for “default surrogate consent laws;” that is, state laws which set priority for people who should be contacted and act as a surrogate decision maker during a medical emergency.
5 thoughts to consider
To be clear about the person whom you would choose to make a decision for you in the event of a critical emergency, you might wish to:
- Talk with an attorney who might help you draft up a medical directive.
- Decide to put in place a health care proxy – which, in some states, must be updated when a patient is admitted to a hospital or nursing home.
- Explore temporary power of attorney to go into effect in the event of a serious accident or illness – if your state prefers this to a health care proxy.
- Make your wishes known to your relatives even if you immediately print out a short Internet medical directive.
- Ask relatives to respect the decisions you have made with your partner and attorney.
According to Charles Sabatino, J.D., Ph.D, American Bar Association Commission on Aging and Law and summarized in Advance Directives, the Merck Manual,
"When state law does not authorize a default surrogate decision maker, doctors and hospitals still usually turn to next of kin, although the extent of their legal authority becomes less clear. In the rare event that the issue is referred to a court, courts generally prefer to name a family member as guardian or conservator to make health care decisions, but they may also turn to a friend or a stranger to direct care. A durable power of attorney for health care (and, in some cases, a living will) eliminates almost any need for the courts to get involved and helps ensure that the person’s health care decisions will be respected." (5)
Additionally, advance directives may in some way mitigate the possibility of a post-traumatic stress disorder, which researchers have found affects one in three surrogates who have been involved in making life care decisions. However, stressful situations can be alleviated through communication with physicians and those on hospitals teams trained in end-of-life decisions, whether sudden or anticipated.
It is especially important to talk with parents or loved ones in nursing homes or assisted living facilities. While all too often they may wave you off when bringing up the subject, talking with them in the presence of a member of the nursing staff and suggesting that it is simply a policy to have directives in place, can be helpful.
(Rita Watson, MPH, writes on issues affecting the elderly as a former recipient of the MetLife Foundation Journalist in Aging Award of the Gerontological Society of America and New America Media.)
References:
1. FastStats, CDC, April 29, 2015 Hospital Utilization, National Hospital Discharge Survey: 2010 table
2. Andrew B. Cohen, MD, DPhil; Mark Trentalange, MD, MPH; Terri Fried, MD Patients With Next-of-Kin Relationships Outside the Nuclear Family JAMA. 2015;313(8):868. doi:10.1001/jama.2015.133.
3.Thaddeus Mason Pope, J.D., Ph.D, Making Medical Decisions for Patients without Surrogates N Engl J Med 2013; 369:1976-1978November 21, 2013DOI: 10.1056/NEJMp1308197
4.Kevin B. O’Reilly / End-of-life care: How you can help stressed surrogates Posted June 13, 2011 http://www.amednews.com/article/20110613/profession/306139942/4/ End-of-life care:
5.Sabatino, Charles JD, Advance Directives and Advance Care Planning: Legal and Policy Issues, Health and Human Services, American Bar Association, Commission on Law and Aging 2007 and Advance Directives, Merck Manual, Dec 2012
Copyright 2015 Rita Watson
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