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2.4 SURROGATE DECISION MAKERS

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Crucial clinical decisions must often be made when a patient is very sick and unable to communicate his or her desires about care. Other persons speak in their behalf. Such persons are called surrogates. Traditionally, next of kin have been considered the natural surrogates, and clinicians have turned to family members for their permission to treat the patient. This practice has been tacitly accepted in Anglo-American law, but was rarely expressed in statutes.

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2.4.1 Question Five—Who Is the Appropriate Surrogate to Make Decisions for the Incapacitated Patient?

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In recent years, efforts have been made to clarify the determination of surrogates for medical decision making. Statutes authorize persons to appoint their own surrogates, or holders of durable powers of attorney (see Section 2.3.3). These appointed surrogates supersede any other party, including immediate family members. In addition, many states have enacted legislation that gives specific authority to certain family members, ranking them in priority (eg, first spouse, then parents, then children, then siblings, etc). These statutes avoid the need to seek judicial recourse, except in cases of conflict or doubt about legitimate decision makers. Statutes of this sort are helpful in avoiding conflicting claims to authority. On the other hand, they may designate some party who is inappropriate, for example, a person who is also incapacitated or has a conflict of financial interest. Finally, all states have provisions for the judicial appointment of guardians or conservators for those declared incompetent by a judge.

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2.4.2 The Standards for Surrogate Decisions

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The decisions of surrogates are guided by definite standards. There are two sorts of standards. The first is called “substituted judgment”: when the patient’s preferences are known, the surrogate must use knowledge of these preferences in making medical decisions. The second is called “the best interest standard”: when the patient’s preferences are not known, the surrogate’s judgment must promote the best interests of the patient.

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  • 1. Substituted judgment. “Substituted judgment” is when a surrogate relies on known preferences of the patient to reach a conclusion about medical treatment. This is used in two situations: (1) where the patient has previously expressed his or her preferences explicitly and (2) where the surrogate can reasonably infer the patient’s preferences from past statements or actions.

    The first situation is the most straightforward and occurs when the patient has previously expressed preferences concerning the course of action she would desire in the present circumstances. Whether the patient recorded these preferences in writing or merely informed another person of the preferences orally, the surrogate should follow the patient’s preferences as closely as possible. In effect, the surrogate is not making medical decisions for the patient, but is merely giving effect to decisions the patient would have made for herself. Courts typically apply this standard in situations where the patient’s preferences are known.

    When the patient has not specifically stated what she would want, a surrogate should base his decision on familiarity with the patient’s values and beliefs. Obviously, only individuals with a close association to the patient are suitable as surrogates when this sort of judgment is called for. Surrogates must be careful to avoid the common pitfall of injecting their own values and beliefs into the decision-making process. Studies demonstrate that this happens quite frequently. Only the patient’s values and beliefs are relevant to the substituted judgment decision. An ethics consultant should probe to assure that this mistake does not occur.

    Two important legal cases illustrate the importance of surrogate decision makers and substituted judgment. In the case of Nancy Cruzan (1990), the US Supreme Court was confronted with a request by her parents, who were her co-guardians, to remove artificial nutrition and hydration from their 26-year-old daughter who was in a chronic vegetative state because of a vehicular accident. The patient had previously made statements to her roommate that she would not want to continue her life if she could not live “halfway normally.” The Court, while endorsing the substituted judgment standard, declined to order the removal of life support, because it was unclear whether the evidence about the patient’s preferences met Missouri’s evidentiary standards. The Court ruled that each state can adopt its own evidentiary standards in such cases. When the case was sent back to the trial court, the judge ruled that her roommate’s testimony along with additional testimony from her friends constituted clear and convincing evidence of Nancy’s preferences. Artificial nutrition and hydration were terminated at the request of her parents and she died in two weeks (see Section 3.3.7).

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Cruzan v. Director, Missouri Department of Health. Supreme Court of the United States 497 US 261 (1990).
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Sulmasy  DP, Snyder  L. Substituted interests and best interest judgments; an integrated model of surrogate decision-making. JAMA[JAMA and JAMA Network Journals Full Text]. 2010;304(17):1946–1949.
CrossRef  [PubMed: 21045102]

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In the widely publicized case of Terri Schiavo (2005), Ms. Schiavo had been in chronic vegetative state for 15 years, fed by a feeding tube. Her husband, who had been judicially appointed as her legal guardian, was authorized to make a substituted judgment on her behalf. Mr. Schiavo asserted that, prior to her illness, his wife had expressed her preference not “to be kept alive on a machine.” Her brother-in-law and sister-in-law corroborated this testimony, which was accepted as clear and convincing evidence by all the courts that adjudicated the case. Life support was discontinued despite numerous objections raised by her parents, her siblings, and many political figures. These two cases are described more fully in Section 3.3.7.

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It must be acknowledged that many studies have shown that surrogates often mistakenly believe that they know what their family members would have wanted. One study, for example, showed that surrogates predicted the patient’s preferences with 68% accuracy. Even then, the surrogates were more accurate than physicians. A substituted judgment standard, then, cannot always be taken at face value. The surrogates’ information should be discussed, probed, and checked against other sources of information. At best, information derived from surrogates can help to formulate a picture of the values and beliefs of the patient. Still, legitimate surrogates must be permitted to make these decisions as long as clinicians believe they are acting in good faith.

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  • 2. Best interests. If the patient’s own preferences are unknown or are unclear, the surrogate must consider the best interests of the patient. This requires that the surrogate’s decision must promote the individual’s welfare, which is defined as making those choices about relief of suffering, preservation or restoration of function, and the extent and sustained quality of life that reasonable persons in similar circumstances would be likely to choose. The concept of best interest is discussed more fully in connection with quality of life in Section 3.0.7.

    It may happen that a properly appointed surrogate acts inappropriately. He or she may themselves show some of signs of incapacity mentioned above (see Section 2.2.3). If so, the surrogate must be disqualified and another found. More problematic, the surrogate may make choices that are clearly contrary to the previously expressed wishes of the patient or to the best interests of the patient.

    When a surrogate’s decision runs directly counter to the patient’s previously expressed wishes or the patient’s advance directive, such decisions should be challenged by the medical team. Additional consultation should be sought from an ethics committee, ethics consultation service, or by recourse to the court. A clearly expressed prior preference should have moral priority. When the patient does not have an advance directive or has not expressed prior preferences about treatment, a surrogate’s decision may appear to go contrary to the patient’s best interests (see Section 3.0.7), the medical team should also challenge the surrogate’s decision. However, because best interest is notoriously difficult to determine, a consultation should at least include an extensive discussion with the surrogate, in order to discern the reasoning behind the decision. A surrogate’s well-reasoned best interest judgment may be taken as conclusive.

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Beauchamp  TL, Childress  JF. A framework of standards for surrogate decision-making. Principles of Biomedical Ethics. 7th ed. New York, NY: Oxford University Press; 2012.
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Fritsch  J, Petronio  S, Helft  PR, Torke  AM. Making decisions for hospitalized older adults: ethical factors considered by family surrogates. J Clin Ethics. 2013;24(2):125–134.  [PubMed: 23923811]
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Shalowitz  DI, Garrett-Hayes  E, Wendler  D. The accuracy of surrogate decision makers. Arch Intern Med[Archives of Internal Medicine Full Text]. 2006;166:493–497.
CrossRef  [PubMed: 16534034]
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Sulmasy  DP, Terry  PB, Weisman  CC  et al.. The accuracy of substituted judgments in patients with terminal diagnosis. Ann Intern Med. 1998;128:621–629.
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Torke  AM, Alexander  C, Lantos  J  et al.. The physician-surrogate relationship. Arch Intern Med[Archives of Internal Medicine Full Text]. 2007;167:1117–1121.
CrossRef  [PubMed: 17563018]

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2.4.3 Implied Consent

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In life-threatening emergencies, patients may be unable to express their preferences or give their consent because they are unconscious or in shock. No surrogate may be available. In such situations, it has become customary for physicians to presume that the patient would give consent if able to do so, because the alternative would be death or severe disability. This is sometimes called implied consent. The patient is not, of course, giving consent; the physician is presuming that the patient would consent to treatment if they could. From the ethical point of view, the principle of beneficence, which prescribes that a person has a duty to assist someone in serious need of help, is the ethical justification for emergency treatment of the incapacitated person. The presumption that a person would, if they could, accept help in a critical situation is reasonable. Implied consent also provides the physician with a legal defense against a subsequent charge of battery, although it may not defend against charges of gross negligence if the emergency treatment falls far below the acceptable standards of care.

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2.4.4 Decisions for Patients Who Lack Surrogates (Unrepresented Patients)

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A patient who has lost decisional capacity may have no person who can be identified as a surrogate. The term “unbefriended or unrepresented patient” is sometimes used. Unrepresented patients are patients who lack decisional capacity, who do not have an advanced directive, and who do not have an available person to act as their surrogate decision maker. Unrepresented patients are highly vulnerable both because they are incapacitated and without a surrogate, and because they frequently come from marginalized groups such as the homeless, the mentally ill, and those with substance abuse problems.

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CASE. An elderly homeless woman collapses in a bus station. She is carrying no identity. She is taken to the emergency department. She is badly malnourished with end-stage liver disease. She also has pneumonia. She is intubated, on grounds of an emergency implied consent. She remains stuporous. After three days in the ICU, she develops hepatorenal syndrome and renal failure. Emergency dialysis is initiated, on grounds of implied consent. However, after a week, question arises about terminating respiratory support and dialysis, because her underlying disease is chronic liver failure and, due to age and comorbidities, she is not a candidate for transplantation.

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COMMENT. A legal proceeding to appoint a guardian for this patient can be initiated. The Hospital Social Work Department is adept at this task. However, often it takes considerable time and, as in this case, the critical need for a surrogate emerged slowly. There is no agreed approach to a problem of this sort.

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Ethics committees or hospital-appointed patient advocates have been employed to review the case and, on the basis of principles of beneficence and nonmaleficence, advise regarding treatment. However, ethics committees and patient advocates are hospital entities, and as such, open to allegations of conflict of interest. The principal approach used for these difficult cases of unrepresented patients is to have the patient’s physician or physician team, sometimes in consultation with other physicians, make important decisions for the patients, including end-of-life decisions. A recent multicentered study showed that 81% of end-of-life decisions for unrepresented patients were made by the patient’s medical team either alone or in consultation with other physicians. This study showed, surprisingly, that ethics committee review of the clinical team’s decision occurred in fewer than 20% of cases. This approach of clinician as surrogate decision maker has been criticized on the grounds that this is an inappropriate and potentially conflicting role for clinicians and that the approach lacks standards of procedural fairness. Critics have suggested that instead of clinicians deciding, multiple perspectives should be sought including that of ethics committees, ethics consultants, and patient advocates. In our view, it is important that hospitals formulate a policy that would provide for a decision-making process in which conflict is reduced, for example, by having an outside consultant or by submitting the case to another ethics committee.

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Montgomery-Hunter  K. Limiting treatment in a social vacuum: A Greek chorus for William T. Arch Intern Med[Archives of Internal Medicine Full Text]. April 1 , 1985;145(4):711–713.
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White  DB, Jonsen  A, Lo  B. Ethical challenges when clinicians act as surrogates for unrepresented patient. Am J Crit Care. 2012;21:202–207.
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White  DB, Curtis  JR, Wolf  LE. Life support for patients without a surrogate decision maker: who decides? Ann Intern Med. July 2007;147(1):34–40.
CrossRef  [PubMed: 17606959]

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2.4.5 Consent of Minors

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Family physicians and other physicians who usually treat adults may be approached by young persons who have not yet reached the statutory age of consent (18 years in all states). Such persons can be treated only with the consent of their parents or legal guardian. However, there are several exceptions to this rule.

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  1. In emergency situations when permission cannot be obtained.

  2. Almost all jurisdictions now have special provisions for the treatment of certain conditions without the consent of the minor’s parents. These conditions usually include drug abuse and venereal disease (contraception, abortion, and mental illness are sometimes included, and at other times, specifically excluded). Most states permit minors to make decisions about contraception and abuse treatment, without parental permission.

  3. The emancipated minor is a young person who lives independently of parents, physically, financially, or otherwise. Married minors, those in the armed forces, or those living away at college are considered emancipated. They may request treatment and be treated without parental consent.

  4. “Mature minor” designates a person who is below statutory age and who is still dependent upon parents but who appears to make reasoned judgments. These young persons pose something of a quandary to the physician from whom they seek care. On the one hand, they appear able to decide for themselves; on the other hand, their parents remain legally responsible for them. Legal authorities conclude that the physician may respond to their requests under the following conditions: (a) The patient is at the age of discretion (15 years or older) and appears able to understand the procedure and its risks sufficiently to be able to give a genuinely informed consent; (b) the medical measures are taken for the patient’s own benefit (ie, not as a transplant donor or research participant); (c) the measures can be justified as necessary by medical opinion; and (d) there is some good reason, including simple refusal by the minor to request it, why parental consent cannot be obtained. It is also advisable for the physician to clarify with the minor any billing arrangements, because medical bills sent to parents may breach the confidentiality of the patient.

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Benatar  D. Non-therapeutic pediatric interventions. In: Singer  PA, Viens  AM, eds. The Cambridge Textbook of Biomedical Ethics. New York, NY: Cambridge University Press 1st ed. Chaps 17, 18.
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Goodlander  EC, Berg  JW. Pediatric decision-making: adolescent patients. In: Diekema  DS, Mercurio  MR, Adam  MB, eds. Clinical Ethics in Pediatrics. A Case-Based Textbook. New York, NY: Cambridge University Press, 2011.

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2.4.6 Statutory Authority to Treat

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In all jurisdictions, statutes exist that authorize psychiatrists to restrain mentally ill persons who are dangerous to themselves or to others for psychiatric treatment against their will. These statutes pertain to persons who are suffering from mental disease, and the treatment authorized is treatment only for mental disease. In some situations, both mental disease and medical problems may be present. These situations of dual diagnoses deserve special consideration.

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CASE. A 75-year-old veteran of the Vietnam War is brought to the hospital by a friend. He has a long history of mental disease and alcohol addiction. He has been drinking and is hallucinating that Viet Cong are attacking him. He is breathless, has fainted twice in the last hour, and is incontinent of urine. He says his heart is breaking through his chest. He says he must leave the hospital because it is being bombed. The admitting physician writes in the chart, “I noted hallucinations and psychotic ideation; I am putting the patient on a medical hold and keeping him in the hospital for observation. Diagnosis: paroxysmal supraventricular tachycardia. Medications: haloperidol, digitalis. Further evaluation: assess electrolytes.”

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COMMENT. The question is whether the statutory authorization for involuntary hospitalization allows medical treatment as well as treatment for mental illness. The answer is it does not. The statutes refer to the treatment of mental illness alone as the justification for involuntary commitment. If medical treatment is needed, the patient must consent or, if unable to do so, a legally authorized decision maker must be appointed. If medical treatment is needed for a life-saving emergency, implied consent suffices.

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RECOMMENDATION. The emergency department (ED) physician should immediately request psychiatric consultation. The consulting psychiatrist will examine the patient and, having made a diagnosis of paranoid schizophrenia, may authorize involuntary commitment for treatment of this mental disorder. The ED physician does not have this authority. The term medical hold is sometimes used to describe this procedure but it is misleading for two reasons: physicians, other than psychiatrists, cannot “hold” patients, and the only psychiatric treatments may be administered.

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