(Note: The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 36, Issue 1.)
The greying of America has become a concern for medical professionals and health care planning advocates. According to current demographic trends, there is a growing aging population and an increase in the prevalence of chronic disease among adults 44 years or older.1 Thus, it is vital that families and physicians engage in meaningful communication regarding a patient’s health care and end-of-life care wishes. However, 27% of Americans say they have thought very little about how they would like medical professionals to handle end-of-life medical decisions. In the absence of advance care directives, most individuals unknowingly rely heavily on their state’s default surrogate consent statutes. These statutes grant a person or particular class of people, usually in kinship priority, the default authority to make health care decisions for a loved one when that loved one loses decisional capacity. This article provides a brief overview of state statutory provisions in the U.S. which directly address health care decision-making on behalf of patients lacking advance directives.
Default Surrogate Consent Statutes
Default surrogate consent statutes were enacted to provide legal authority for health care decision-making through a non-judicial rule of law when no guardian or agent had been appointed. States which have adopted these provisions recognize the importance of alternative means of consent to health care in the absence of advance directives. Instead of forcing families and incapacitated individuals into judicial guardianship proceedings for their failure to execute advance directives, surrogate consent laws allow physicians to consult a designated individual or group of individuals who can presumably convey the incapacitated or incompetent patient’s health care wishes and provide informed consent or refusal to proposed health care interventions. Currently, 44 states have enacted surrogate consent laws.
Generally, two types of surrogate consent laws are recognized: hierarchy surrogate consent laws and consensus surrogate consent laws. In four of the states with surrogate consent laws, the law is only applicable to consent for medical research and certain facility admissions.2 Currently, there are seven states with no surrogate consent laws (Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire,3 Rhode Island, and Vermont). In states that have adopted hierarchy surrogate consent laws, family members and the people closest to the patient by kinship usually become the designated surrogate. In Colorado and Hawaii, consensus statutes require that all reasonably available “interested persons” come to a consensus about who should act as the decision-maker. Most state provisions address four key areas of surrogate decision-making:
- the priority of surrogates who may legally act in the absence of an appointed agent or guardian with health care powers;
- limitations on the types of decisions the surrogate is empowered to make;
- the standards for decision-making; and
- the process for resolving disputes among equal priority surrogates.
Potential Surrogates and Priority
Statutory provisions addressing who may act as surrogate for decisionally incapacitated adults vary, but a majority of states have adopted hierarchy surrogate consent laws. Under the hierarchy scheme for decision-making, members of the patient’s family fall within a priority list of potential surrogates who may act as surrogate. In most states, the following persons are designated to serve as surrogates, in descending order: the spouse (unless divorced or legally separated); an adult child; a parent; and an adult sibling. Some also include class designations for other adult relatives including: grandchildren; nieces and nephews; and aunts and uncles. Twenty-one go as far as to include virtually any living adult relative.4 Currently, about half of states include recognition of authority to persons considered to be a “close friend” of the incapacitated patient, although close friend usually falls at the bottom of the priority list.5
Colorado and Hawaii have chosen an alternative to reliance on a priority list by creating a single class of “interested persons.” In Hawaii, “interested persons” includes the patient’s spouse (unless legally separated or estranged), a reciprocal beneficiary,6 any adult child, either parent of the patient, an adult sibling or adult grandchild of the patient, or any adult who has exhibited special care and concern for the patient and who is familiar with the patient’s personal values.7
Fourteen states have enacted provisions for decisionally incapable patients who have no living relative or friend who can be involved in decision-making. Commentators have called this class of patients “unbefriended.”8 The total unbefriended population includes “persons who are decisionally incapacitated and made up of two main groups:
- those who had capacity and lost it, including frail elders in nursing homes and hospitals; and
- those who never had capacity, including persons with mental retardation or developmental disabilities.”9
In nine states, attending and primary physicians have been placed on surrogate priority lists for Patients with no family or friend surrogates. These states typically seek to prevent unilateral decision-making by requiring physicians to consult an ethics committee or have the concurrence of a second physician before health care decisions are made for the unbefriended.
Limitations on Decision-Making
To protect against the potential misuse and abuse of incapacitated adults, some states have placed limitations on surrogate decision-making. The District of Columbia has adopted a procedural limitation requiring that at least one witness be present whenever a surrogate grants, refuses, or withdraws consent on behalf of the patient.10
About a dozen states permit surrogates to withhold life-sustaining treatment only if the patient has been certified to be in a terminal or permanently unconscious condition. In a few states, special conditions apply to the withholding of artificial nutrition and hydration. Ohio goes as far as prohibiting it without a court order.11
Standards for Decision-Making
In a majority of states, surrogates must make decisions in accordance with a substituted judgment standard. Under this approach, the surrogate makes decisions according to the patient’s wishes even if such wishes may not have been expressly conveyed. Instead, with as much accuracy as possible, the surrogate must make an inference based on the patient’s statements and conduct. Where the patient’s values and wishes are unknown, surrogates must take an objective approach in determining the patient’s best interests. The best interest standard seeks to implement one’s best interests by reflecting upon the welfare or wellbeing of the individual.12
Resolving Disagreement Among Surrogates
Lastly, most states provide avenues for resolution of differences when equal priority surrogates are unable to reach a consensus regarding health care decisions or when some interested party objects to the process or decision. First, the designation of a hierarchy is the primary strategy states use to avoid disputes, because those lower in the hierarchy cannot overrule the authorized surrogate without resorting to judicial proceedings. The most common provision for dispute resolution among multiple surrogates at the same level of authority (typically adult children) is to allow providers to rely on a majority of the equally authorized surrogates. About 18 states follow that principle, although whether such democratic principles succeed for families under stress in a clinical setting may be in doubt. Currently, 39 states and the District of Columbia expressly address some form of judicial recourse for disagreements. Even without an express provision for resolving disagreements, judicial intervention through the initiation of a guardianship or conservatorship is always available as a possible intervention by any interested party.
The Future of Surrogate Consent
Despite the many statutory improvements and changes in the law, significant challenges remain to be resolved by legislatures and policy makers. Generally, surrogate consent statutes may need further evaluation in three areas: (a) whether specifying a priority order of surrogates can accurately reflect today’s family and cultural diversity; (b) whether surrogate decisions accurately reflect patients’ values and priorities, considering the resources available to support surrogate decision makers; and (c) how to devise more meaningful decision-making processes for unbefriended patients.
Addressing the Realities of Family and Cultural Diversity
The hierarchical model of surrogate appointment applied in most states may not appropriately address the needs of patients in non-traditional family settings. Family differences in culture, religious tradition, ethnic and racial background all affect the decision-making process. Decisions may be a group obligation, or may be driven by communitarian concerns rather than individual preferences, or may involve certain mandates or prohibitions relating to ill health and the dying process. Even in traditional family structures, the legal hierarchy may not reflect reality where families are geographically far flung or complicated by divorce and remarriage, or where a friend has become the closest confidant and supporter.
Under the hierarchical model of surrogate appointment, there is very little focus on collaborative decision-making. In contrast, the consensus model expands the decision-making process to include individuals with some personal tie to the patient.13 In order to better support surrogates, this model acknowledges that a single person may be ill equipped to make health care decisions for the patient. Instead, collaborative decision-making among family surrogates is employed and the health care facility may provide support to surrogates by providing a consultation by the facility’s ethics committee and input from various members of the patient’s treatment team.
Further, the rigid structure of the priority list also denies legal authority to non-traditional families and persons who may be best suited to make decisions for the patient. Currently, 19 states and the District of Columbia allow same-sex marriage.14 In these states, same-sex spouses are given statutory priority to serve as surrogates just as opposite-sex spouses are. As more states with hierarchy surrogate consent laws allow same-sex marriage, and as more same-sex couples marry, same-sex spouses will not be prevented from making health care decisions due to their inferior status on the priority list.
Providing Greater Support for Surrogate Decision-Makers
The most difficult issue facing family surrogates is how to understand the unique health care issues and treatment options, and how to make an informed decision that reflects their loved one’s values, goals, and preferences. It is not a familiar role. There is a tremendous need for health care providers to provide more support to family surrogates. Under the hierarchical model of surrogate appointment, there is very little focus on collaborative decision-making. In contrast, the consensus model expands the decision-making process to include individuals with some personal tie to the patient.15 This model acknowledges that a single person may be ill equipped to make health care decisions for the patient. Both models are needed to accommodate the cultural diversity of families.
Dignity driven decision-making is an important emerging concept. Defined as “a process in which decisions about the patient’s care emerge from a collaborative relationship developed over multiple encounters,” this method also favors patient autonomy and greater support for surrogate decision-makers.16 Further, care featuring dignity-driven decision-making involves balancing medical care with supportive services.17 There are limitations surrounding the amount of time and resources individual clinicians can devote to the dignity-driven decision-making process.18 However, hospitals and health plans using this model have invested in additional resources, such as trained social workers to manage parts of the process. Undoubtedly, surrogates and patients could benefit greatly from a process that requires a team of clinicians and other staff to work collaboratively throughout the process.
Meaningful Processes for Unbefriended Patients
There is a great need to devise respectful and dignified ways to make health care decisions for unbefriended individuals. Although judicial processes such as guardianship proceedings may be available, more timely and respectful non-judicial processes can be more appropriate. Because all patients deserve the same quality of health care treatment, meaningful processes can help engender a clear focus on the interests and well-being of unbefriended patients.
One approach allows physicians to serve as ad hoc surrogates and with other physicians and/or ethics committees make decisions for an unbefriended patient. Another is to allow employees of the health care facility where the patient receives treatment to serve as surrogates. Institutional committees at the health care facilities where the patient receives treatment can also play an important role in the decision-making process. Scholars have proposed that this group include a pre-established subcommittee of the hospital ethics committee.19 While routinely relying on judicial procedures does not serve best serve unbefriended patients in need of immediate care, a less extensive judicial intervention may serve as a last resort. Health care institutions have opted for the temporary guardianship process as an expedited, value-neutral way of making treatments decisions for unrepresented patients.20
In conclusion, default surrogate consent statutes are far from ideal solutions to decisionmaking in the absence of an advance directive. There is a great need for all Americans to communicate personal health care and end-of-life care wishes effectively. As a result, advocates and health care professionals are encouraged to increase awareness about options for advance care planning.21 Equipped with a better understanding of the history and current progress of advance directives, individuals may be more inclined to complete the documents. Nonetheless, until culture change leads to execution of advance directives by the majority of Americans, default surrogate consent statutes will remain all the more important. ■
1 Jaya K. Rao et al., Completion of Advance Directives Among U.S. Consumers, 46 Nat’l J. of Preventive Med. 65, 65 (2014) (The data collected from this survey was collected from 2009 and 2010 Porter Novelli Healthstyles surveys. There were a total of 7,946 respondents included in the population-based end-of-life care data).
2 In California, Kansas, New Jersey, and Oklahoma the law only applies to consent for medical research. The surrogate consent statute in Wisconsin only applies to certain facility admissions.
3 New Hampshire enacted a surrogacy law in 2014, effective
1/1/15. The statute is not included in this analysis.
4 There are 21 states and the District of Columbia which list “other adult relatives” as another broad category of decision makers.
5 Currently, 22 states list “close friend” where relatives are not available to serve as surrogates.
6 Reciprocal beneficiaries include two adults who are parties to a valid reciprocal beneficiary relationship. Hawaii Rev. Stat. §572-C-4. Under HRS § 572C-3, a valid reciprocal beneficiary relationship is established where: (a) each party is at least eighteen years old; (b) neither party is married, a partner to another reciprocal beneficiary relationship, or a partner in a civil union; (c) the parties are legally prohibited from marrying one another; (d) consent of either party to the relationship has not been obtained by force, duress, or fraud; and (d) each party has signed a declaration of reciprocal beneficiary relationship.
7 Hawaii Rev. Stat. § 327E-2. In Colorado, the “interested person” definition is similar. See, Colo. Rev. Stat. Ann. § 15-18.5-103(3).
8 Naomi Karp & Erica Wood, Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly, A.B.A. Commission on L. and Aging, 15 (July 2003), available at http://www.americanbar.org/content/dam/aba/administrative/law_aging/2003_Unbefriended_Elderly_Health_Care_Descision-Making7-11-03.authcheckdam.pdf.
9 Id. at 15.
10 DC Code § 21-2210.
11 Idaho Code § 39-4504.
12 Alan Meisel & Kathy L. Cerminara, The Right to Die: The Law of End-of-Life Decisionmaking, § 4.01 C 3 (suppl.) (New York:Aspen, 2013).
13 Thomas L. Hafemeister, End of Life Decision Making, Therapeutic Jurisprudence, and Preventive Law: Hierarchal v. Consensus-Based Decision-Making Model, 41 ARIZ. L. REV. 329 (1999).
14 Nat’l Conf. of State Legislators, Defining Marriage: State Defense of Marriage Laws and Same-Sex Marriage (July 11, 2014), http:// www.ncsl.org/research/human-services/same-sex-marriage-overview.aspx.
15 Thomas L. Hafemeister, End of Life Decision Making, Therapeutic Jurisprudence, and Preventive Law: Hierarchal v. Consensus-Based Decision-Making Model, 41 ARIZ. L. REV. 329 (1999).
16 Bruce C. Vladeck Erin Westphal, Dignity-Driven Decision Making: A Compelling Strategy For Improving Care For People With Advanced Illness, 31 Health Affairs, 1271 (2012).
18 Id. at 1273.
19 Supra, note 12 at 270.
20 Pope & Sellars, at 271.
21 Jaya K. Rao et al., Completion of Advance Directives Among U.S. Consumers, 46 Nat’l J. of Preventive Med. 65 (2014). ■