Surrogate Decision Making: Medical and Legal Implications for Healthcare Providers
Popular media depictions show death occurring quickly with little or no pain or suffering. Unfortunately, this fictional depiction is not typical of most individuals’ end-of-life experiences, particularly in hospitals or other healthcare settings. The reality for most individuals is that current medical treatments using advanced technology can delay death for an uncertain, sometimes lengthy, period of time.1-4 Well over half of all patients experience some type of invasive and/or painful medical procedure shortly before their death.5 In addition, most deaths in Intensive Care Units have involved someone, usually a family member or designated surrogate decision maker, having to make a difficult decision about initiation or continuation of life-support treatments.6
Few individuals in the United States have drafted an advance directive or discussed their wishes with their healthcare provider, family member, or a designated surrogate decision maker before becoming ill.7,8 Although healthcare providers have long relied on family members or caregivers to make decisions on behalf of incapacitated individuals, they are often not adequately prepared to take on this important duty.9-13 Adding to this problem, a busy and unfamiliar environment such as an Emergency Department or Intensive Care Unit is frequently the setting where these issues are first considered.4,14,15
Communicating about end-of-life decisions is extremely difficult, even under ideal circumstances, let alone in medical situations with significant variability, stress, and uncertainty.13,15-18 Complicating this further is that most healthcare providers have had little or no preparation in handling the complex communicational, emotional, and legal ramifications of end-of-life decision making. Finally, these important decisions are jointly influenced by the legal precedents and statutes that impact medical standards of care. This review will speak to these multifaceted issues that healthcare providers must face as they make critical medical decisions with little to no direct input from the individual at the end of life.
Background: Legal Basis of Surrogate Decision Making
The legal concept that one individual can make decisions for someone else derives from the English common law concept of agency.19 This relationship requires three elements: (1) evidence that the surrogate is authorized to assume that responsibility; (2) acceptance by the surrogate of the responsibility; and (3) the understanding by both parties that the surrogate will direct the activity. 19 A surrogate is not just a spokesperson, but a representative empowered to use his/her judgment to make decisions on behalf of another person.19 This was not generally an issue in healthcare until 30-40 years ago, as the public perceived physicians and allied providers as the most qualified individuals to make healthcare decisions, and they, in fact, made the majority of patient care decisions. 20 However, in the 1970s our country underwent a significant shift wherein individual surrogate decision makers began going to court to obtain the right to make healthcare decisions for their family members. Important terms used in surrogate decision making include the following:
Decision-making capacity – Assessment by the healthcare provider of the patient’s ability to comprehend, appreciate, and communicate the risks, benefits, and alternatives to any proposed healthcare treatment. 21,22
Surrogate – A person designated to speak for the patient who is lacking decision-making capacity. This person can be a family member, friend, or spouse.23
Default surrogate –A decision maker for patients who are unable to speak for themselves and have no legally authorized person or guardian. This is typically granted based on his/her relationship to the patient using a kinship hierarchy that usually begins with the patient’s spouse.23
Advance directive – Includes both an individual statement written (or form completed) by the patient that communicates how he/she wants medical decisions made and designation of a person, called a durable power of attorney for healthcare, to make decisions for him/her when he/she can no longer make healthcare decisions for himself/herself.12,22,24
Substituted judgment doctrine – The substituted judgment standard “asserts that surrogates should make medical decisions for incapacitated patients that reflect the decisions the patients would make for themselves in the same circumstances if competent.”2,21,25,26
Best interest judgment doctrine – If the patient’s wishes cannot be ascertained or inferred in any way, the surrogate is obligated to make a decision consistent with what most people would decide for themselves under the same circumstances, or what would be best for the individual.2,26,27
Informed consent – Common law principle that vests in a competent person the right of self-determination about what happens to himself/herself and the right to refuse treatment.9
Autonomy – An ethical principle that guides decision making at the end of life; “respect for a patient’s capacity of self-determination and exercise of personal informed choice.”3,28
Good quality death – A death free from avoidable distress for patients and their families, in accordance with the patients’ and families’ wishes, while being reasonably consistent with clinical, cultural, and ethical standards.29
This review of the current literature is intended to empower healthcare providers in the often difficult decision-making process and complex medical and legal issues that can arise at the end of life. PubMed, EBSCO, and LegalTrac electronic databases were searched using the Medical Subject Headings (MeSH) terms surrogate, proxy, durable power of attorney, terminally ill, palliative care, resuscitation, life support care, feeding tube, and end-of-life. Manual searches of medical journals by author and reference lists for related sources were also used. The search was limited to peer-reviewed, English-language manuscripts published between 1988 and 2009, and to adult populations. The search omitted books, articles related to financial proxy, editorial, and review articles. The resulting 72 medical and 33 legal articles were reviewed to determine factors that impacted surrogate decision making at the end of life. These factors have been categorized with respect to three key stakeholders: dying individuals; surrogates; and healthcare providers.
Individuals at the End of Life
It is virtually impossible for anyone to consider or anticipate all of the medical events that might ensue or decisions that might need to be made on an individual’s behalf when a life-threatening illness occurs. Most individuals receive life-sustaining interventions when incapacitated due to serious illness, pain, or sedation; therefore, it is extremely important that a surrogate play an integral role early in the provision of care so that he/she can be informed and prepared for the decision-making process.11 Unfortunately, this rarely happens. A majority of individuals who become incapacitated do not have an advance directive and have not discussed their end-of-life wishes with a family member or other surrogate decision maker.30 Only 16% of adults have a formal advance directive, and fewer than 21% have appointed someone as a surrogate decision maker or clearly indicated their end-of-life wishes verbally or in writing.6
A number of potentially important factors have been identified that may serve as barriers to discussing end-of-life issues with a potential surrogate decision maker. Even when asked to do so, some individuals choose not to discuss their wishes or preferences for end-of-life care.14 The discomfort they experience in thinking or talking about their death acts as a strong deterrent.15 If they do broach the subject, it may be in such general terms that surrogates are unable to determine exactly what end-of-life decisions are preferred.31
Many other factors can also act as barriers to end-of-life discussions. How a patient perceives the financial, emotional, and physical burdens placed on surrogates, family members, or friends may influence his/her willingness to discuss end-of-life issues.10,13,15 Many mistakenly assume that only someone very ill or elderly needs to make decisions about life-sustaining treatment. They may avoid or delay appointing surrogates or discussing these issues with them until a life-threatening event occurs, which is frequently much too late.1,4 Even when individuals recognize that they are ill, they may not fully comprehend the expected course or prognosis of their condition,6 or may believe that appointing a surrogate means relinquishing control over their ability to make decisions.32 In addition, individuals may overestimate their life expectancy or misunderstand their prognosis.7 The issues involved are sometimes perceived to be complex and confusing. In one study, patients reported that they would want to continue ventilator treatment even if they were told that they had less than a 1% possibility of improvement. However, if they were told that they would not recover from a coma, they would not want to continue the treatment.7 Another study found that individuals focused more on possible functional outcomes of interventions.33 They named as important to them such outcomes as their cognitive and physical abilities and the emotional and caretaking burden on loved ones.34 Unfortunately, such outcomes are difficult to predict. Interestingly, individuals at the end of life reported requiring less absolute certainty prior to removing a life-sustaining treatment than their surrogates.31
Some individuals state that they prefer to have surrogates make end-of-life decisions for them because they believe that their surrogates will make the best decision even if they override the patients’ own preferences.3,8,13,31,33,35 They sometimes overestimate the level of decision making that surrogates are prepared to make and underestimate the importance of communicating their values and priorities so that surrogates can accurately communicate the individual’s wishes at the end of life.31 However, when the illness is deemed incurable, patients believed that surrogates should have leeway to make decisions with the support of a healthcare provider.14,34
There is no more difficult task than the one confronting surrogates trying to make serious decisions to remove or limit life-sustaining treatment.36 Surrogates are expected to downplay their own wishes and make treatment decisions that most faithfully reflect the patient’s wishes or, if those wishes cannot be known, the best interests of the patient.18,25,26 Key to this process is the important but frequently overlooked concept that a surrogate cannot express a patient’s wishes if he/she does not know what they are.37 Even when surrogates have had extensive conversations with patients, they must weigh the hesitancies, contradictions, changes of mind, or even humor in those conversations.26 In addition, discussions with surrogates are frequently inadequate, leaving them without the critical information they need to make reasonable decisions about the initiation or continuation of all treatments, but especially life-support treatments.
Communicating about prognosis is difficult at best but becomes even more challenging for surrogates and healthcare providers when significant medical uncertainty exists.13,16-18 Possible outcomes such as patient death, likelihood for persistent cognitive or functional disability, or low likelihood of return to previous functional status, as well as alternatives to treatment, have not been adequately explained to many surrogates.6 They are then forced to rely on suppositions and projections of the future based on their own experience, information, hearsay, and fears.26
Most surrogate decision makers are family members. This is significant, as a family is a complex entity, and significant changes in any member of a family can drastically affect—either positively or negatively—the entire family.13,15,35,38 Healthcare providers may feel that surrogates have unrealistic expectations about the patient’s prognosis, and may not be involved in healthcare or end-of-life discussions until late in the process when they are suddenly designated as the decision maker and face choices that they may be ill prepared to make.26 Family discord may also play a role in the decision making and, as one study found, may increase the probability that a patient will get more testing and procedures, with symptom-control measures being postponed or never provided.15 Fagerlin et al25 found that, even when surrogates have an advance directive available, they are no more accurate in their predictions about end-of-life preferences than surrogates who are making predictions without an advance directive. Another study found that surrogates were just as likely to be wrong about what a patient would want as what he/she would not want.7 In other studies, surrogate decision makers were more likely to overpredict their family member’s desire for treatment.3,13,24,25
In fact, several studies have found that family members’ and physicians’ predictions of a patient’s preferences are no more accurate than chance alone.3,10,18,24,25,34,35,39,40 The idea of selfless decision making is generally unrealistic. Different surrogates for the same patient have widely dissimilar judgments depending on their relationships and differing perceptions.3,25 People commonly project their own values and beliefs onto others, assuming that other people will respond as they would.3,24,25 Surrogates are not immune to this phenomenon and, in several of the studies, they selected for patients what they would want for themselves.3,7,10
Prior to the 20th century, healthcare providers could do little to alter the course of many serious diseases or injuries, but people are now able to live for prolonged periods with conditions that would have proven rapidly fatal prior to the advent of modern medical technologies. However, in some cases this means living with disabilities, cognitive deficits, persistent symptoms, and some form of ongoing support. Given that there is no consensus as to when such life-sustaining treatments should be provided, patient preference is an important factor in these medical decision-making situations.1,41 When the patient cannot make decisions, the healthcare provider must discuss end-of-life issues with surrogate decision makers.30 This requires that the healthcare provider identify an appropriate surrogate decision maker. Most commonly, this is the spouse, adult children, or parents.30
Even when a surrogate has been identified and will act as surrogate, decision making can be compromised by difficulties with communication and understanding of complex medical information with significant variability and uncertainty.6 Conflicts often arise when the healthcare provider doubts that the surrogate understands the issues or when the surrogate makes decisions that are incompatible with the healthcare provider’s own judgment.30 Diversity of diagnoses and treatments, along with the uncertainty of prognoses, may create significant dilemmas for the healthcare provider as well. A study indicated that stated end-of-life wishes (verbal preferences, advance directives, and discussions with healthcare providers) have little impact on the actual care that is provided at the end of life.16 When physicians were asked to predict what a patient would want at the end of life, their predictions generally corresponded more closely to their own wishes than they did to those of their patients.25,42
Some healthcare providers may fear a malpractice action for negligence or wrongful death if they decide to remove life-sustaining treatments.2 Most legislation, however, includes protective immunities for healthcare providers who withdraw life-sustaining treatments pursuant to an advance directive or asserted by a surrogate decision maker as long as they act in good faith.2 In litigated cases, the courts have ruled that a physician may refuse to honor a surrogate’s decisions if the surrogate directs care that is contrary to generally accepted standards of medical practice.2,36 Discussions with surrogates about end-of-life decisions with significant variability and uncertainty are almost always challenging and stressful for healthcare providers.11,17 When a patient’s prognosis for survival is poor, physicians’ goals to preserve life, help patients, and value autonomy frequently conflict.34 Unfortunately, many healthcare providers have not been adequately trained to resolve their own conflicts, much less initiate or conduct end-of-life discussions with individuals or surrogates who may be struggling with the same concerns.4,1
In addition, end-of-life discussions frequently require significant time and attention, which is always at a premium in a busy medical setting.15 End-of-life decisions occur within a healthcare system struggling to resolve conflicting priorities: providing cost-effective medicine while providing complex medical care with significant variability and uncertainty, with little to no direct input from the individual.43 Healthcare providers cannot realistically be both the providers and rationers of these services.28 Both traditional and contemporary medicine hold that healthcare providers are obligated to deliver treatment that reflects the wishes or the best interests of the individual, regardless of the individual’s mental competence or the cost-effectiveness of the services provided.43
This review of surrogate decision making emphasizes that healthcare decisions are fraught with significant variability and uncertainty, and are frequently based on the personal values and beliefs of both surrogate decision makers and healthcare providers. The surrogates’ interests are often closely intertwined with the patient’s due to personal, emotional, and financial relationships.19 Despite this, healthcare providers must frequently make critical medical decisions with little to no direct input from the individual at the end of life.30,36 Ideally, patients would tell providers and caregivers what they want to happen either before or during an illness. The reality is that decisional capacity is usually absent, requiring a surrogate to make decisions, usually with limited information and frequently on short notice or within other time constraints.11
The President’s Council on Bioethics summarized many of the issues attendant on end-of-life decision making: …prudence is that excellence of heart and mind that enables us to see deeply and wisely into the truth of things—deeply enough to discern the goods that are present, wisely enough to identify the best means available for pursuing those goods, without violating the norms of right and justice…as we shall see, the obligation to seek the best possible care hardly means that there is an easy answer in every case, or that there is a best decision in every situation.44 End-of-life decision making requires the participation of both healthcare providers and surrogates to honor an individual’s wishes. Healthcare providers must provide recommendations based on their technical expertise, while surrogates must provide information based on their special knowledge of the individual and the individual’s wishes. This process is complicated, requiring skills that are outside the traditional training of most providers. This process entails the merging of technical abilities of the provider with the surrogate’s understanding of the individual, along with caring and compassion to fulfill the individual’s wishes.34
Effective communication between healthcare providers, individuals, and their surrogates is needed to ensure that individuals’ wishes at the end of life are honored.4 This is a complex process and no one individual can anticipate all of the decisions that will have to be made. A shared decision-making model implemented early in treatment with surrogates and healthcare providers working together to more effectively prepare for and tackle the profound issues surrounding benefits and burdens of treatment on behalf of an individual is important. This entails frequent and open communication that occurs in stages, with the ultimate objective of setting goals of care and determining what aspects of care the individual would feel were acceptable or unacceptable based on expected outcomes.4 It is likely that this process would enhance patient autonomy by increasing the sharing of information about the patient’s desires, the various treatment options, and their potential outcomes. Additionally, it could potentially decrease the risk of liability, as it allows for surrogates and healthcare providers to share decision making around jointly established goals of care.
The authors gratefully acknowledge the work of research assistant Susan Moore in the completion of this manuscript. The authors report no relevant financial relationships. Drs. Garner and Sullivan are from Central Arkansas Veterans Healthcare System, Geriatric Research, Education and Clinical Center, and the Donald W. Reynolds Department of Geriatrics, College of Medicine, University of Arkansas for Medical Sciences, Little Rock; Dr. Lefler is from the College of Nursing, University of Arkansas for Medical Sciences; and Dr. Kirchner is from Central Arkansas Veterans Healthcare System, South Central Mental Illness Research, Education and Clinical Center, Department of Psychiatry, College of Medicine, and Department of Maternal and Child Health, College of Public Health, University of Arkansas for Medical Sciences.
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