(The pdf for the issue in which this article appears is available for download: (Bifocal, Vol. 37, Issue 1).)
You are a physician in a busy urban hospital when a 95-year-old man arrives in the emergency room, non-responsive, after collapsing at home. You need to make a decision about his code status. While no medical records have accompanied him, soon his two daughters arrive. You determine from talking with them that there is no guardian and no advance directive—and also that one daughter favors a do not resuscitate order and the other daughter opposes it.
Rising Role of Surrogates in Medical Decisions
Scenarios like this are increasing in frequency. Converging demographic trends increasingly make the question of who decides if the patient cannot central to medical practice. The boomers are aging; the “old old” population is swelling; the number of Americans with Alzheimer’s disease is markedly escalating; the number of people with intellectual disabilities living into old age is rising; and a significant number of individuals each year suffer a traumatic brain injury. A recent landmark study by the Institute of Medicine found that:
Most people nearing the end of life are not physically, mentally, or cognitively able to make their own decisions about care. Approximately 40 percent of adult medical inpatients, 44-69 percent of nursing home residents, and 70 percent of older adults facing treatment decisions are incapable of making those decisions themselves.1
Moreover, increasingly older patients in need of decisions about end of life care will be seen by physicians who do not know them. Hospital medicine is an emergent medical specialty dedicated to the delivery of comprehensive medical care to hospitalized patients. Hospitalists are on the front line every day. They work under pressure—sometimes with incomplete records or delayed records, and little or no knowledge of a patient’s background. They frequently encounter incapacitated patients with no advance directive or guardian, sometimes with discord among relatives or no apparent relatives, and must determine quickly how a decision is to be made. Hospitalists have no pre-existing relationship with the patient or family—thus increasing the challenge of identifying a surrogate who knows about the patient’s wishes.
In situations in which the patient is not able to give informed consent for treatment, and there is no guardian and no advance directive, some 44 states2 have “default surrogate consent laws”—formerly commonly known as “family consent laws.” These laws generally provide a hierarchy of authorized family decision-makers who in descending order starting with the spouse can make medical treatment decisions on someone’s behalf. Over 20 of these statutes now specify that a “close friend” familiar with the person’s values can make the decision if none of the listed family members exist or are available—and approximately 11 states have developed a mechanism for “unbefriended” patients, usually involving choices by designated physicians often in conjunction with other physicians or ethics committees.
Because less than 30% of Americans have an advance directive in place,3 these surrogate consent laws cover the vast majority of decisions for patients unable to give informed consent. Indeed, “default surrogates are the most numerous type of surrogate. Therefore, the sequence and manner in which they are designated . . . has great significance.”4 Yet there has been no research on their use and implementation. For example, it would be important to know how often the need for surrogate decision-making in the medical context occurs; whether physicians look to the state law in determining who is to make choices; and whether hospitals have policies aligned with the surrogate laws.
ABA Commission Focus Group
Because questions about surrogate decisions are so grave and the existing knowledge so scant, in the Spring of 2015, the ABA Commission on Law and Aging conducted a focus group of physicians at the March meeting of the Society of Hospital Medicine. The group included 22 hospitalists from 13 states, with a medical experience range of from five to 32 years. While small and not conclusive for research purposes, the focus group began to shed light on how the laws are perceived and used on the ground in hospital settings (although other clinicians may have different perspectives).
We asked the physicians how frequently they face situations in which there is no guardian and no advance directive, and there is a need for a decision by family members. They reported a range of frequency from “four or five times a year” to “several times a week.” Of those who gave specific numbers, the average was 40 times in the past year. For cases in which there was no family, but a close friend, the average was 28 times per year. For cases in which surrogates are in conflict over treatment, the average was 21 times in the past year. For “unbefriended” cases, the average was 12 times in the past year. Concerning unbefriended patients, some of the focus group attendees pointed out that performing a due diligence search for contacts often results in finding someone who knows the person, however attenuated.
A majority of physicians, but not all, said they were aware of a state law on surrogate decision-makers. Interestingly, the responses did not always correlate with the actual state statute. Less than half the physicians in the group were fully knowledgeable about their state provisions. Additionally, 12 participants said they were aware of a hospital policy that would affect their identification of a surrogate decision-maker.
We asked the physicians to name the two top medical treatment decisions in which issues of surrogacy come up. By far, the top issue was life sustaining treatment decisions, followed by code status decisions, surgery and discharge.
Perhaps most interesting was the perspective of the hospitalists on the decision-making process. During the focus group, many stated that the process to identify the patient’s values and preferences was more important than the legal identification of the proper decision-maker. Participants talked about initiating family meetings, bringing all parties together to make a decision, and being guided by what people who know the patient best think he or she would want. Many indicated they wanted to find the decision that most closely approximates what the person would choose (i.e., “substituted judgment”5). In other words, getting the decision right (i.e., what the patient would have wanted) was more important than identifying the right surrogate under state surrogacy laws. Here is what they said about how surrogate decisions are made on the hospital floor:
- “You find out who [the patient is] closest to, even outside the borders of law, and ask that person what do you think their wishes would be.”
- “We ask who she would want to speak on her behalf, and then we accept that, if they are willing to perform that role.”
- “In conflict, you’re in a tough spot, but almost always you try to get the family to agree.”
- “If there is a conflict, you bring as many people in so when the people leave they are not upset. People are emotionally invested. You can’t throw laws at someone and say ‘the law says you are the decision-maker.’”
- “Get all the siblings in a room and focus on what would be his or her decision. Often it takes multiple family meetings. When they’re together, it’s easier.”
The focus group results thus call into question whether the 44 state surrogate consent laws on the books have any substantial association with real life hospital practices—and also suggest that the surrogate issue will continue to arise with compelling frequency.
Moreover, the group’s discussion alluded to but did not directly explore related issues of surrogacy: To what extent do the surrogates named by law or selected by the physicians accurately reflect the values of the patient? What hospital practices encourage and support involvement of the surrogates? To what extent do the physicians and hospital staff take action to support the patient so perhaps the patient could make his or her own decisions rather than or in conjunction with the surrogates.
Finally, what guidance is available to surrogates to perform their often anguishing role? As to guidance for surrogates, see the ABA Commission’s booklet on Making Medical Decisions for Someone Else (available on the Commission's Health Care Decision-Making website at http://ambar.org/healthdecisions), and consider adapting this guide for your state.
1 Institute of Medicine, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” Washington DC, The National Academies Press, 2014.
2 American Bar Association Commission on Law and Aging, http://www.americanbar.org/content/dam/aba/migrated/aging/PublicDocuments/famcon_2009.authcheckdam.pdf.
3 Pew Research Center for the People and the Press, “Strong Public Support for Right to Die: More Americans Discussing and Planning End-of-Life Treatment,” 2006, http://www.people-press.org/2006/01/05/strong-public-support-for-right-to-die (accessed April 2014); AARP, “AARP Bulletin Poll: Getting Ready to Go,” Jan 2008, http://assets.aarp.org/rgcenter/il/getting_ready.pdf.
4 Thaddeus Mason Pope, “Legal Fundamentals of Surrrogate Decision-Making,” CHEST Journal, Medical Ethics, American College of Chest Physicians, April 2012, 1074-1081.
5 “Substituted judgment” is a decision-making standard in which surrogated make decisions “as they believe the incapacitated person would have made them.” See Kohn, Nina & Blumenthal, Jeremy, “Designating Health Care Decision-Makers for Patients Without Advance Directives: A Psychological Critique,” Georgia Law Review, Vol.42, p. 979, 2008. Also see Torke, Alexia et al., “Substituted Judgment: The Limitations of Autonomy in Surrogate Decision-Making,” Journal of General Internal Medicine, 23(9), pp. 1514-1517 (2008).