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Legal aspects in palliative and end-of-life care in the United States

Legal aspects in palliative and end-of-life care in the United States
Author:
Thaddeus M Pope, JD, PhD, HEC-C
Section Editor:
Robert M Arnold, MD
Deputy Editor:
Jane Givens, MD
Literature review current through: Apr 2021. | This topic last updated: Aug 20, 2019.

INTRODUCTION — Caring for patients at the end of life is a challenging task that requires not only the consideration of the patient as a whole but also an understanding of the family, social, legal, economic, and institutional circumstances that surround patient care. Unfortunately, there are many myths and misconceptions about what may or may not be ethical and legal in this setting [1].

In the United States, fear of litigation may prompt unnecessary interventions or hinder clinicians from acting completely ethically when they are faced with a patient with life-threatening illness [2]. One study found that as many as 93 percent of clinicians in high-risk medical specialties (ie, emergency medicine, general surgery, orthopedic surgery, neurosurgery, obstetrics/gynecology, and radiology) report practicing defensive medicine in that they did testing beyond what they felt was clinically necessary [2].

Acting in a manner that does not comply with the law can have serious consequences for both the patient and clinician. Negative consequences for patients include receiving unwanted treatment or not receiving treatment that is wanted. Both scenarios could potentially result in civil and criminal sanctions for clinicians [3]. Importantly, the mere absence of explicit legal authorization for an action does not mean that action is prohibited. Medicine remains a largely self-regulated profession. There is comparatively more law regarding end-of-life care. But, the law does not and cannot directly address all interventions and procedures.

Understanding the legal aspects of end-of-life care should give the practicing clinician the confidence and freedom to act ethically and reasonably. Some of the legal standards regarding end-of-life care in the United States vary by state, but there are specific legal precedents surrounding end-of-life care that generalize. When in doubt, clinicians should consider an ethics consultation, seek legal counsel, or seek assistance from risk management.

Different hospitals will have different structures and roles for these different departments. Most hospitals have an ethics consultation service available 24 hours a day, seven days a week. This service helps clinicians navigate conflict and uncertainty and helps determine which actions should or should not be taken. Increasingly, clinical health care ethics consultants are credentialed as Healthcare Ethics Consultant-Certified (HEC-C). Many of the issues most frequently handled by ethics consultants are end-of-life issues. (See "Ethical issues in palliative care" and "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit" and "Kidney palliative care: Ethics" and "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults".)

The legal department (or office of general counsel) exists to ensure that the hospital operates in accordance with applicable laws and regulations. Most hospital lawyers focus on issues other than patient care. For example, business attorneys are responsible for the negotiation of business transactions and the preparation of documents and agreements related to business, corporate, and real estate matters. Other attorneys focus on matters such as labor and employment, litigation, and privacy. Typically, at least one attorney specializes in matters directly related to patient care.

In contrast to the legal department, risk management is more focused on patient care and ethics issues. Risk management may be an independent department, or it may be part of the legal department. Like ethics consultants, risk managers frequently are not attorneys. Because risk management is responsible for identifying, evaluating, and addressing not only actual but also potential risk, they are eager to proactively learn of situations that might present conflict or patient safety issues.

This topic review discusses issues related to legal aspects of end-of-life care that are specific to the United States. These may not apply outside the United States, although many of the principles are becoming more widely accepted. Ethical issues regarding end-of-life care, euthanasia, and physician-assisted suicide, ethical issues in the intensive care unit, and topics related to medical futility, advance care planning, and advance directives are discussed separately. (See "Physician-assisted dying" and "Ethical issues in palliative care" and "Ethics in the intensive care unit: Informed consent" and "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit" and "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults" and "Advance care planning and advance directives".)

HISTORIC PERSPECTIVE — Throughout the history of medicine, a primary responsibility for clinicians has been the care of dying patients. Over centuries, clinicians have developed ethical norms regarding care of the dying, including the withdrawal and withholding of life-sustaining treatments.

The first suggestion that clinicians should withhold medical interventions from terminally ill patients in some circumstances probably dates to Hippocrates’ injunction “to refuse to treat those (patients) who are overmastered by their disease, realizing that in such cases medicine is powerless” [4].

Subsequently, clinicians and religious leaders also have argued that withholding care from dying patients may be appropriate in some situations:

In 1835, Jacob Bigelow urged fellow members of the Massachusetts Medical Society to withhold “therapies,” such as cathartics and emetics, from hopelessly ill patients [5].

In 1848, John Warren, the surgeon who performed the first operation with ether anesthesia, urged that ether should be used “in mitigating the agonies of death” [6].

In 1958, Pope Pius XII, in response to questions about resuscitating patients and maintaining comatose patients on respirators, stated that clinicians had no obligation to use such “extraordinary” means to forestall death [7].

THE RIGHT TO REFUSE MEDICAL INTERVENTIONS — Prior to 1976, legal cases in the United States involving the refusal of life-sustaining medical care usually involved Jehovah’s Witnesses. These decisions were justified based upon the First Amendment’s right of religious freedom.

The Quinlan case — In 1976, this changed with the Quinlan case. In that case, 21-year-old Karen Ann Quinlan suffered two 15-minute-long apneic periods, probably related to intoxication with alcohol and drugs. While her friends had attempted resuscitation, she was comatose when she arrived at the hospital and, one year later, was in a persistent vegetative state requiring respiratory support and artificial feedings. After consulting with his priest, Quinlan’s father wanted Karen to be taken off the ventilator.

Initially, his request was denied, but the New Jersey Supreme Court then granted the request. The court ruled that the right to privacy includes a right to refuse medical care [8]; this right extends to incompetent patients, and the right can be exercised on their behalf by their legal guardian. Importantly, the court held that decisions to withdraw medical treatments, at least when there is consensus among clinician and families, does not require going to court but can be handled by hospital ethics committees, clinicians, and families.

Karen Ann Quinlan was taken off the ventilator and was able to breathe on her own. She was kept alive for nine more years with artificial nutrition and hydration.

The Quinlan case changed the focus in cases of treatment refusal from a right of religious freedom to a person’s so-called “right to die.” Throughout the last part of the 1970s and 1980s, many state courts, particularly in California, Florida, Massachusetts, and New Jersey, established the legal norms for terminating life-sustaining treatment. Nearly 15 years of rulings at the state level were solidified when the United States Supreme Court decided the Cruzan case in 1990; this case was very similar to the Quinlan case [9].

The Cruzan case — Nancy Beth Cruzan was 31 years old when she was in an automobile accident; this resulted in severe brain damage that placed her in a persistent vegetative state dependent upon a feeding tube. After four years without improvement in her cognitive function, her family asked to have her artificial feeding and hydration stopped. In its decision, the United States Supreme Court recognized that competent patients have a constitutional right to refuse medical care [10]. Using the Fourteenth Amendment’s guarantee that no person shall “be deprived of life, liberty, or property, without due process of law,” the Supreme Court affirmed patients’ rights to refuse medical treatments [10]. The court declared that artificial hydration or nutrition is no different from other medical interventions. Although mentally incapacitated patients have the same right, the Supreme Court allowed states to impose restrictions on how explicit and specific the patient’s prior wishes had to be [10].

After this court ruling, some of Cruzan’s friends provided evidence that she had previously expressed wishes that she would not want artificial feedings to be continued in such a scenario. As a result of this testimony, her feedings were terminated.

Mentally competent patients need not be terminally ill to exercise this right to refuse interventions; they have the right regardless of health status. In addition, the right applies equally to withholding proposed treatments and to discontinuing initiated treatments. Of note, this right to refuse medical care does not imply a correlative right to demand treatment [11,12].

The Cruzan case established a constitutionally protected liberty interest in refusing medical treatment, which has been referenced in subsequent appellate court decisions [13]. In theory, as noted by the Cruzan case, the right of patients to refuse medical therapy can be limited by four countervailing state interests in [12]:

Preservation of life

Prevention of suicide

Protection of third parties such as children

Preserving the integrity of the medical profession

In practice, these interests almost never override the right of competent patients and incompetent terminally ill patients who have left explicit advance directives.

The Schiavo case — In 1990, 27-year-old Theresa Marie “Terri” Schiavo suffered cardiopulmonary arrest in her home, leading to a persistent vegetative state requiring artificial nutrition and hydration by feeding tube. After eight years without neurologic recovery, her husband and guardian requested that her feeding tube be removed, but her parents objected, and the case went to court. In 2000, a Florida circuit judge determined that there was “clear and convincing evidence” that she would not have wanted to be kept alive in this state. Therefore, clinicians should honor the request of Schiavo’s husband to remove her feeding tube.

Despite several additional attempts on the part of Schiavo’s parents to prevent removal of her feeding tube, including claims that she could recover, in 2004 the Florida Supreme Court affirmed that her husband could exercise her right and discontinue treatments, since that was consistent with her wishes [14]. The United States Supreme Court stood by the lower court’s decision and refused to hear the case [15].

This consistent refusal to intervene on behalf of Schiavo’s parents’ desire to continue nutrition and hydration is reaffirmation of the right to refuse medical care, even for mentally incapacitated patients, and reaffirmation that artificial nutrition and hydration are medical treatments.

The right to refuse medical care is a right explicitly granted to patients by health care decisions acts in almost every state. Incapacitated patients can refuse nutrition and hydration through an instructional advance directive (a living will), through a Physician Order for Life-Sustaining Treatment (POLST), or by the direction of their surrogate. But, with respect to those surrogates not appointed by the patient, some states impose some limitations on the surrogate’s authority to withhold or withdraw nutrition and hydration.

MEDICAL INTERVENTIONS THAT CAN BE STOPPED — Every medical intervention, including artificial nutrition and hydration, may be terminated at the patient’s request. Specific legal cases have sanctioned the withholding or withdrawal of respirators, chemotherapy, blood transfusions, hemodialysis, and major surgical operations. In the Cruzan case, the United States Supreme Court definitively stated that artificial nutrition and hydration are medical interventions that can be withheld or withdrawn under the guidelines that apply to other medical treatments [10]. (See "Withholding and withdrawing ventilatory support in adults in the intensive care unit" and "Kidney palliative care: Withdrawal of dialysis" and "Stopping nutrition and hydration at the end of life" and "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit" and "Management of cardiac implantable electronic devices in patients receiving palliative care", section on 'Withholding versus withdrawing therapy'.)

Less settled is whether ordinary food and water may similarly be terminated at the patient’s request [16]. Many patients who want to hasten their death are neither eligible for physician-assisted dying (PAD, also known as medical assistance in dying [MAID]) nor dependent upon any life-sustaining treatment. These patients have increasingly turned to voluntarily stopping eating and drinking (VSED). While patients have a right to refuse even interventions that do not constitute health care, some clinicians are reluctant to support VSED without direct, clear, and authoritative permission. Again, the absence of express legal permission is not the same as legal prohibition. Still, uncertainty remains. Few statutes, appellate cases, or agency regulations provide authorization or guidance.

Nevertheless, professional society policy statements endorse VSED’s ethical and legal legitimacy [17]. Going even further, Nevada authorized a new “dementia directive” form that permits patients to choose “yes” or “no” to the following statement: “I want to get food and water even if I do not want to take medicine or receive treatment” [18]. (See "Stopping nutrition and hydration at the end of life", section on 'Voluntary cessation of intake'.)

PHYSICIAN-ASSISTED DYING AND ITS RELATIONSHIP TO WITHHOLDING TREATMENT — Physician-assisted dying (PAD, also referred to as medical aid in dying [MAID]) refers to the physician’s act of providing medication, a prescription, or other interventions to a patient with the understanding that the patient intends to use them to hasten their death. Literature and practice also refer to PAD as physician-assisted death and, increasingly less commonly, physician-assisted suicide.

Outside the United States, PAD is legal in the Netherlands, Belgium, Switzerland, Luxembourg, Colombia, Canada, and Victoria (Australia) (table 1). (See "Physician-assisted dying", section on 'Current legal status of assisted dying'.)

United States Supreme Court deference to states — The legality of PAD has been addressed by the United States Supreme Court three times. The court ruled in all three cases that decisions about PAD are properly left to the “laboratory of the states.” The court declined to rule that PAD was either required or prohibited by federal law:

In the 1997 case Washington v. Glucksberg, several physicians counseling patients at the end of life challenged a state law banning PAD on the grounds that the Constitution guarantees the liberty of a consenting, terminally ill adult to PAD. The Supreme Court ruled that a state could ban PAD because such a ban is “rationally related to a legitimate government interest,” namely preserving human life and upholding the integrity and ethics of the medical profession. Thus, the court held that individuals do not have a constitutional right to PAD [19]. The majority view, written by Chief Justice Rehnquist, drew a distinction between the right to withdraw or withhold life-sustaining treatments as a liberty interest in being free of unwanted bodily invasion versus the right to PAD, which does not contain a liberty interest [10,20].

In the 1997 case Vacco v. Quill, the court maintained that there is a rational basis for a distinction between laws allowing doctors to withhold medical treatment and laws permitting PAD. As stated by the decision, “The law has long used actors’ intent or purpose to distinguish between two acts that may have the same result… a physician who withdraws, or honors a patient’s refusal to begin, life-sustaining medical treatment purposefully intends or may so intend, only to respect his patient's wishes… A doctor who assists a suicide, however, ‘must, necessarily and indubitably, intend primarily that the patient be made dead’” [20].

While the court has not held that individuals have a constitutional right to PAD, it has not overturned state laws allowing this practice. In the 2006 case Gonzales v. Oregon, the Supreme Court preserved Oregon’s Death with Dignity Act [21]. In 2001, the attorney general had issued an interpretive rule announcing that assisting suicide was not a legitimate medical purpose under federal drug control legislation. The Supreme Court upheld an appellate court decision that had rejected this interpretation.

Expanding legalization in United States jurisdictions — In the United States, Oregon legalized PAD in 1997. PAD is also legal by statute in Washington State (2008), Vermont (2013), California (2015), Colorado (2016), Washington, DC (2016), Hawaii (2018), New Jersey (2019), and Maine (2019) (table 2). In addition, PAD has been ruled not illegal by a state court decision in Montana. (See "Physician-assisted dying", section on 'Current legal status of assisted dying'.)

These statutes are nearly identical, generally exempting state-licensed physicians from civil or criminal liability when, in compliance with specific safeguards, they dispense or prescribe a lethal dose of drugs requested by a state resident with a terminal illness that, within reasonable medical judgment, will cause death within six months.

PAD and voluntary active euthanasia (including the legal status both in the United States and elsewhere), and practical guidance for responding to requests for these interventions are discussed in detail separately. (See "Physician-assisted dying".)

Physician-assisted suicide is explicitly illegal in six states (Alabama, Arkansas, Georgia, Idaho, Ohio, and Rhode Island).

DECISION-MAKING CAPACITY — Capacitated patients have the right to refuse medical care. Even in cases where the patient’s wishes may conflict with those of their family, the patient’s right to refuse care is determinative. For mentally incapacitated patients who left living wills or other advance care documents, the wishes in these directives are also definitive.

Distinguishing capacity and competence — Patients are presumed to have capacity until that presumption is rebutted. Determining that a patient lacks capacity requires neither a formal legal proceeding nor a psychiatric evaluation. Instead, it can be done by clinicians. Capacity is task-specific [22]. Even though a patient may lack capacity to make some decisions, they may still retain the capacity to make others.

By contrast, competence is distinct in two ways. First, it is a global determination of the person’s ability to make both medical and nonmedical decisions. Second, while it relies upon clinical assessments, competence is a legal determination that must be made by a judge.

Assessing capacity — An assessment of “decision-making capacity” can and should be performed by the primary clinician. There is no singular “test” of decision-making capacity. The Mini-Mental Status Examination and other quantitative measures of cognitive function do not predict the ability to make medical decisions, except in cases of extreme impairment [23]. (See "The mental status examination in adults", section on 'Cognitive screening tests'.)

Decisions become more difficult when patients have some cognitive impairment, such as moderate Alzheimer disease. In this situation, the first step is trying to determine if the patient is able to make some decisions for themself. A patient may have the capacity to express their values and preferences and make decisions regarding treatment even if they are unable to carry out other functions of higher reasoning, such as balancing their checkbook or living independently. On the other hand, a patient without capacity may seem intact in superficial conversation but be unable to make decisions regarding their medical care on their own preferences and values. If not, the next step would be to determine whether they made any previous instructions for their care. If a patient does not have the mental capacity to make medical decisions and there are no prior instructions, a surrogate decision maker should be identified. (See 'Surrogate decision makers' below.)

An approach to the assessment of decision-making capacity is covered in detail elsewhere and summarized in the table (table 3). (See "Assessment of decision-making capacity in adults", section on 'How to assess capacity'.)

The role of surrogate decision makers as they relate to advance care planning are discussed separately. (See "Advance care planning and advance directives", section on 'A practical approach to ACP'.)

SURROGATE DECISION MAKERS — A 2010 study of adults age 60 or older who died between 2000 and 2006 found that 42 percent required decision making about treatment in the final days of life, but 70 percent lacked decision-making capacity. Of those lacking decision-making capacity, around one-third did not have advance planning directives [24].

Arguably, if patients left sufficiently clear and complete instructional advance directives (living wills), there would be no need for surrogates. Providers could simply consult the patient’s own prior instructions for guidance. However, more than four decades of experience shows that it is difficult to effectively implement this form of advance planning and decision making. Most individuals do not complete advance directives. Most of those that are completed are not available when needed. Even when completed and available, instructional advance directives are almost never sufficiently clear and detailed to obviously apply to the patient’s current situation [25]. Moreover, a majority of patients want their surrogates to have flexibility and leeway to consider the benefits and burdens of treatment [26]. (See "Advance care planning and advance directives", section on 'Use of advance directives'.)

Therefore, clinical practice relies on surrogates to make or help make treatment decisions for incapacitated adults. If a patient does not have the mental capacity to make medical decisions, a surrogate decision maker should be identified. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

Types of surrogates — There are three types of surrogates:

All states permit a patient-identified agent (durable power of attorney for health care, medical power of attorney, health care agent).

All states permit a court-appointed surrogate (legal guardian or conservator) to make decisions about life-sustaining treatment for an incapacitated person.

Most states permit clinicians to identify a surrogate from a defined list. These surrogates are usually limited in what decisions they can make by the patient’s medical condition [27].

Patient-appointed surrogates — Every state has established a process that allows competent individuals to appoint an agent to decide health care in the event that they become unable to decide for themselves. This appointment can be made through a legal form typically referred to as an advance directive, or a durable power of attorney for health care (DPAHC). While relatively short and simple, these appointment forms require the strict observation of certain formalities [28]. For example, many states require the individual to sign the form before a notary public or in the presence of two witnesses who are neither related to the individual nor employed at a facility where the individual is a patient or resident.

The agent’s power is often referred to as “springing” because it is triggered when the patient loses capacity and it vanishes when the patient regains capacity. Whenever authorized to act, the agent typically has the right to make all health care decisions that the patient could have made for him or herself, unless the patient has explicitly limited the agent’s authority. Clinicians must comply with decisions made in good faith by an agent to the same extent they would have to comply with decisions made by the patient [25]. An important point is that clinicians do not need to confirm the legality of the advance directive or DPAHC. They have legal immunity and may and should comply in good faith with advance directives that appear valid on their face.

Court-appointed surrogates — In cases of conflict among potential surrogates or where no previously designated surrogate is reasonably available, it is sometimes necessary to petition a court to appoint a surrogate. A court-appointed surrogate is typically referred to as a “guardian” or “conservator.” After the appointment, the court is supposed to supervise and monitor the guardian’s choices on behalf of the patient to ensure that the patient is getting appropriate medical care. Because this entire process can be cumbersome and expensive, comparatively few surrogates are guardians [25].

Default surrogates — While some surrogates are patient appointed and some are court appointed, most surrogates are designated by clinicians pursuant to statutory priority lists that typically proceed in this sequence [25,29] (though the precise order varies from state to state):

Spouse

Adult child

Parent

Adult sibling

Nearest living relative

Close friend

Many states impose limitations on these categories. For example, spouses are first unless they are separated or estranged. Some states do not qualify family members by their status alone but also require that the individual have maintained significant contacts with the patient.

Unbefriended patients — Some incapacitated patients have no available surrogate of any kind. In general, approaches to medical decision making for these “unbefriended” or “unrepresented” patients in health care settings are variable, and professional guidelines and laws to address issues arising in this population are inconsistent [30,31]. Some states have developed special mechanisms for authorizing treatment decisions on behalf of these patients. But, such mechanisms are available in only a few states and often for only certain treatment decisions or certain patient populations [32].

Methods for making decisions — Capacitated patients have the right to refuse medical care and can use whatever criteria they deem acceptable; it is their values, whatever they are, that guide their choice [33]. Similarly, for mentally incapacitated patients who left advance directives that specify the interventions they want or do not want, their values determine their choices. Regarding mentally incapacitated patients who either appointed a proxy without specific indications of their wishes or who never completed an advance care directive, this question remains controversial.

Substituted judgment — According to court decisions and statutes, the substituted judgment criterion holds that the surrogate should try to imagine what the patient would do if the patient were competent [34]. That is, the proxy should try to “ascertain the incompetent person’s actual interests and preferences,” making a decision that “would be made by the incompetent person if that person were competent” [35]. The decision is subjective in the sense that the proxy tries to figure out what the incompetent person would want. However, in the absence of specific guidance from the patient when competent, substituted judgment becomes more of a guessing game, or, as some courts have called it, a “cruel charade” or “a legal fiction at best,” than a way of fulfilling the patient’s wishes [12,36].

It may be possible to imagine what the incompetent would want if they had left explicit instructions, such as a living will. However, in this case, there is no substituted judgment, only carrying out the patient’s explicit wishes [12]. When there are no explicit instructions, the attempt to predict what the person would want is unrealistic. Unfortunately, most surrogates, even close family members, cannot accurately predict what the patient would have wanted [37-40]. Empirical studies suggest that the preferences of individuals regarding medical treatment may shift over time, meaning that, even if they were accurately informed at one point, surrogates could inaccurately represent a patient’s wishes at the time of incapacitation [41].

Best interests — If the surrogate cannot apply the substituted judgment standard, then the surrogate should employ the best interests standard. Here, the surrogate should evaluate treatments by balancing the benefits and risks and select those treatments in which the benefits maximally outweigh the burdens of treatment [11,12,42]. Legally, this standard is considered “objective” because it does not rely on imagining what the patient would choose but rather on some externally defined standard [11]. The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research endorsed this standard, as have several prominent courts [11,43].

For the best interests standard to work, there must be some “objective, societally shared criteria” about what constitutes benefits and burdens [43]. However, as many court cases in which there is conflict between family members or between family members and the medical team (eg, Schiavo case) make clear, there is no objective way of determining benefits and burdens and how they should be balanced. (See 'The Schiavo case' above.)

One court suggested that burden should be determined solely by levels of pain [11]. However, for many people, being in a persistent vegetative state, even if they are not feeling pain, is a serious burden that they would want to avoid. As one dissenting judge put it: “A decision to focus exclusively on pain as the single criterion ignores and devalues other important ideals regarding life and death” [11]. Thus, deciding what constitutes a benefit or burden seems to depend on a patient’s personal values. The notion of an objective best interests standard also seems illusory. On the other hand, many courts use balance sheets that specify the burdens and benefits of treatments in tables and rows [44].

Ordinary versus extraordinary care — Several other criteria have been proposed to help guide surrogate decision makers. Unfortunately, none is both practically feasible and ethically justified. For example, derived originally from Catholic teachings but used by secular scholars, some advocate a distinction between ordinary and extraordinary care, with ordinary care being mandatory, whereas extraordinary care may be withheld or withdrawn [7].

However, many ethicists and courts have concluded that the distinction between ordinary and extraordinary care is too vague and has “too many conflicting meanings” to be helpful in guiding surrogate decision makers and clinicians [11,12,34,45]. As one lawyer noted, ordinary and extraordinary are “extremely fact-sensitive, relative terms: what is ordinary for one patient under particular circumstances may be extraordinary for the same patient under different circumstances, or for a different patient under the same circumstances” [45]. Thus, the ordinary/extraordinary distinction should not be used to justify decisions about stopping treatment [12].

Problems with surrogates — Many have maintained that the incapacitated patient’s family is the most appropriate surrogate decision maker. In the 1980s, many courts affirmed this view, recognizing that, when patients had explicit but unrecorded conversations with family, friends, and others about their wishes regarding terminating treatments, these conversations should be used as decision-making guides.

However, empirical studies suggest that spouses and other nuclear family members generally do not know the preferences of patients regarding the termination of life-sustaining treatments; therefore, they may not reach the same decision that the patient would have reached [37-39]. One study found that even though patients believed both their family (87 percent) and doctors (90 percent) could accurately represent their wishes, neither family members nor doctors were able to adequately predict patient wishes on scenario testing, with agreement ranging from 59 to 88 percent [40].

Another investigation found that “shared decision making about end-of-life treatment choices was often incomplete, especially among less educated families” but noted that “higher levels of shared decision making were associated with greater family satisfaction” [46].

Surrogate decision makers often struggle with decisions related to goals of care and such decisions can cause psychological distress which may lead to treatment that does not align with patient’s preferences. A review of the literature suggested that over one-third of surrogates had a significant, prolonged, negative psychological experience when making an end-of-life decision for a family member [47]. A small minority had a positive emotional response to surrogate decision making, which was significantly correlated with being confident that they knew which treatment the patient would have wanted. It is not clear that any particular intervention can improve psychological distress in surrogate decision makers. At least one trial suggests that a family support intervention in critically ill patients in intensive care units was associated with significant improvements in markers of the quality of decision making (including the patient and family centeredness of care and the quality of clinician-family communication) but had no effect on the extent of psychological distress [48]. (See "Communication in the ICU: Holding a family meeting", section on 'Psychological impact'.)

Problems with surrogate laws — Even though an increasing number of adults are unmarried and live alone, some of whom identify an individual as “next of kin” who is not a nuclear family member [49], state default surrogate consent statutes vary in their recognition of important relationships beyond the nuclear family, and such persons are not universally recognized as decision makers for incapacitated patients [50]. Federal regulations governing the Veterans Health Administration (VHA) and VHA policy establish a surrogate hierarchy that includes persons outside of the nuclear family and authorizes them to make health care decisions on behalf of patients without decisional capacity in the absence of nuclear family [51]. In other cases, advance directives can be used to identify decision makers who differ from nuclear family members, but completion rates remain too low [52].

These discrepancies emphasize the importance of patient-surrogate discussions about preferences prior to a loss of capacity. Unfortunately, these proactive discussions are rare, and clinicians are usually left relying on the family for decisions. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

Constraints on surrogate decision making — With Cruzan, the United States Supreme Court held that there is no constitutional requirement that families be permitted to exercise the right of mentally incapacitated patients to terminate care when the patients have not left explicit statements of their preferences [10]. Importantly, however, the court did not delineate uniform national rules regarding who should decide for mentally incapacitated patients. Instead, the court permitted each state to make the rules it deemed best. The court also endorsed, as legally acceptable but not required, Missouri’s contention that the “evidence of the incompetent’s wishes as to the withdrawal of treatment be provided by clear and convincing evidence.”

Since then, several state supreme courts have limited the rights of families to decide for incompetent patients when there is no advance care directive or formal appointment of a proxy [53-55]. These courts have accepted that, when a patient who is mentally incapacitated is in a persistent vegetative state, comatose, or terminally ill, family members (even if not formally appointed as proxy decision makers) can withdraw life-sustaining treatments based on prior conversations with the patient or on their understanding of the patient’s values.

However, these courts have refused to permit families not formally appointed as proxies to terminate life-sustaining treatments for mentally incapacitated but conscious patients, patients who can interact minimally [53]. Explicit statements by the patient that relate to not wanting to be on life support or in a vegetative state, courts have argued, do not meet the standard of “clear and convincing” evidence [53].

The United States appellate court in the Schiavo case, for example, noted that “Cruzan did not establish that the Constitution requires application of a clear and convincing evidence standard before termination of care. The Supreme Court held only that a state could, if it wished, require that evidence of the incompetent’s wishes be proven by clear and convincing evidence” [56]. (See 'The Schiavo case' above.)

This issue can be further illustrated by the Wendland case, in which a 42-year-old man suffered permanent brain damage and hemiparesis in a car accident [53]. In accord with what they believed were his clear wishes, his family requested that his tube feedings be discontinued. Wendland was not in a persistent vegetative state; he was conscious, able to draw shapes, and follow very simple commands, such as choosing a color block. A few months prior to his accident, he had explicitly stated that he would not want to live like his father-in-law, who was dying of gangrene and had his ventilator withdrawn at the family’s request. Similarly, he explicitly stated to his brother just days before his accident that his brother should not let him be kept alive in a vegetative state.

But, the California Supreme Court ruled that, when the patient is conscious and not terminally ill, and there is no advance care directive, there must be “clear and convincing” evidence of the patient’s view [53]. According to the court, “clear and convincing” evidence requires prior comments to refer to the specific intervention in the specific circumstances of the patient, not a similar or vaguely characterized health state. The family was not permitted to have the feeding tube withdrawn.

California and some other states have ruled that clear and explicit verbal statements are not legally binding as applied to incapacitated patients who are still conscious. Nevertheless, at least in the United States, it appears that any properly filled out formal advance care document or durable power of attorney designation, whether it conforms to a state’s specific document or not, is protected by the Constitution and must be honored [10].

These limits emphasize the value of having patients complete formal advance care directives specifying their wishes regarding life-sustaining treatments and who they want to be their proxy decision maker. Advance directives have been associated with improved quality of care and better communication with bereaved family members [57]. Further discussion on advance care planning and advance directives, including specific documents, is covered separately. (See "Advance care planning and advance directives".)

CONFLICTS REGARDING OVERLY AGGRESSIVE END OF LIFE TREATMENT — The ethical and legal focus of the 1970 and 1980s was the right to die. Families and patients were fighting for the right to stop life-sustaining treatment. But since the 1990s, the focus has been just the opposite. Patients and families are fighting for the right to continue life-sustaining treatment. Increasingly, families want clinicians to maintain life-sustaining treatments for patients who are comatose, in a persistent vegetative state, anencephalic, or otherwise catastrophically critically ill, but the treating clinicians object to providing such treatment [58,59]. Two of the most prominent cases involved babies Charlie Gard and Alfie Evans in the United Kingdom [60,61].

In difficult cases, clinicians, nurses, and other care providers should come to an agreement on how they think it is best to care for the patient and whether withdrawal of medical interventions is appropriate. This will typically use the best interest standard informed by whatever knowledge the team has of the patient’s previous wishes. This shared understanding among the caregiving team is critical; any dissent makes it harder to approach the family and will frequently become a focus of discussion with the family. Once an agreed-upon approach is developed, there should be a discussion with the family to present the reasons why the recommended approach is considered best. (See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults" and "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit" and "Communication in the ICU: Holding a family meeting".)

Futility — In general, it is now agreed that there is no objective standard of futility [59]. The term merely conceals subjective value judgments about when a treatment is “not beneficial” [62-65]. A review of the literature regarding the role of medical futility determinations during end-of-life care stated, “The concept of medical futility remains controversial, and there is no general professional consensus about the appropriate use of futility in medical decision making…” [66].

In the late 1980s and early 1990s, some argued that clinicians could terminate “futile” treatments [67]. Unfortunately, the term futility can be used variably [62-65]:

Physiologic futility means that an intervention will have no physiologic effect. For example, it would be physiologically futile to administer antifungals as treatment for an acute myocardial infarction.

Qualitative futility refers to an intervention that “fails to end a patient’s total dependence on intensive medical care” or that would not change the patient’s permanent unconsciousness [67].

Quantitative futility occurs “when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of reported empiric data) that in the last 100 cases, a medical treatment has been useless” [67].

Clinicians should be cognizant of the national and local laws governing end-of-life care where they practice. Some hospitals have enacted “unilateral DNR” policies to allow clinicians to provide a do-not-resuscitate order in cases where consensus cannot be reached with families and there is medical opinion that resuscitation would be futile if attempted. Indeed, some states have enacted so-called medical futility laws to protect clinicians from liability if they terminate life-sustaining treatments against family wishes [68]. (See "Ethics in the intensive care unit: Responding to requests for potentially inappropriate therapies in adults" and "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit".)

For example, in Texas, ethics consultations are called upon if there is a conflict between the medical team and family about potentially futile interventions. If the ethics consultation agrees with the findings of the medical team but the family disagrees with the determination, the hospital is tasked to facilitate transfer of the patient to another institution willing to provide treatment [68]. If this attempt is not successful within 10 days, then the hospital and clinician may unilaterally withdraw treatments determined to be futile, although the family may appeal to a state court for an extension if a transfer arrangement is imminent [69]. Similar laws have been enacted in California and Virginia [70,71]. At the same time, other states have been enacting laws that prevent clinicians from withholding or withdrawing life-sustaining treatment without consent [72,73].

Early data suggest that Texas law increases futility consultations for the ethics committee and that most families concur with withdrawal decision [68]. As of 2007, according to data from Baylor University Medical Center on 16 Texas hospitals, there had been 974 ethics committee consultations on medical futility cases, 65 in which committees ruled against families and gave notice that treatment would be terminated. Treatment was withdrawn for 27 of those patients, while the remainder were transferred to other facilities or died while awaiting transfer [74].

Unwanted treatment — While medical futility conflicts are situations in which families may not get desired life-sustaining treatment, the opposite situation also presents some risk to clinicians. Families have sued when advance directives or family preferences were ignored and life-sustaining treatment was administered contrary to patient wishes.

Three representative examples are provided:

In 2007, a Florida jury awarded USD $150,000 against a nursing home for keeping a resident on life support for six days against the statements contained in her advance directive. The jury found that the nursing home had failed to develop a plan for managing her care consistent with her living will [75,76].

In 2013, a Georgia physician intubated and treated a patient contrary to her advance directive and agent’s instructions. The agent brought a lawsuit. In 2017, after losing an appeal before the state supreme court, the hospital settled for $1 million [77,78]. (See "Advance care planning and advance directives".)

In 2019, a Montana jury awarded $400,000 against a hospital that performed cardiopulmonary resuscitation on a patient despite confirming his DNR order [79].

These lawsuits and similar sanctions imposed by government agencies underscore the legal weight of advance directives and the importance that clinicians be prepared to honor them.

COMMUNICATION AND DOCUMENTATION — No matter how detailed a clinician’s knowledge of the law is, clinician-patient or clinician-family communication is essential for patient/family satisfaction with medical care [80,81]. An open dialogue should be encouraged. This is especially important in end-of-life care, when many treatment decisions are made based upon patient preferences.

Summaries of these interactions should be included in the medical record as they both relate to decisions about current care and can potentially help in future care decisions. Key components of this documentation include who participated in the meeting, how they were related to the patient, and the patient’s capacity if they participated in the discussion, along with decisions that were made. Documentation of clinician-patient discussions about patient wishes while the patient is still able to express them can help once the patient is no longer mentally competent. Along with medical facts such as physical exam and laboratory values, clinician decision making and the reasons behind the decisions should be incorporated into the medical record.

Goals of treatment are not limited to the promotion of health and prevention of disease, cure, or prevention of untimely death. They can also include [82]:

Education and counseling about the condition and its prognosis

Improvement or maintenance of functional status

Relief of symptoms, pain, and suffering

Emotional support of the patient and family

Specifically mentioning goals of care and which treatments will be given or withheld based on patient preferences clarifies the decision-making process. (See "Communication in the ICU: Holding a family meeting".)

INTERNATIONAL PERSPECTIVES — It is important to recognize that the legal standing of advance care planning and advance directives is largely restricted to Western, educated, industrial, rich, and democratic (WEIRD) countries, including Australia, Great Britain, and some countries in Europe. Outside these regions, advance directives and advance care planning remain concepts that are largely unheard of, and/or they may not reflect the values of other peoples, societies, or countries. (See "Advance care planning and advance directives".)

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, “The Basics” and “Beyond the Basics.” The Basics patient education pieces are written in plain language, at the 5th to 6th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10th to 12th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on “patient info” and the keyword(s) of interest.)

Basics topic (see "Patient education: Advance directives (The Basics)" and "Patient education: Sudden cardiac arrest (The Basics)")

SUMMARY AND RECOMMENDATIONS — Laws regarding end-of-life care in the United States vary by state. When in doubt, clinicians should seek legal counsel and/or assistance from their ethics committees for help with individual cases.

Patients must give their explicit consent for care, except in specific instances of implied consent. Patients can refuse medical care, even if this refusal results in their death. This is based on their constitutional right to be free of bodily invasion without their consent. (See 'The right to refuse medical interventions' above.)

All medical interventions, including artificial nutrition and hydration, may be terminated at the patient’s request. (See 'Medical interventions that can be stopped' above.)

To have the capacity to make decisions, the patient must be able to express their goals and values and justify their choice in association with these values and goals. If a patient does not have the capacity to make medical decisions for themself, a surrogate decision maker should be found. (See 'Decision-making capacity' above and 'Surrogate decision makers' above.)

Patients with the capacity to make medical decisions have the right to refuse medical care, even if their wishes conflict with those of their family members. For mentally incapacitated patients who left advanced directives, the wishes in these directives are determinative. Decisions become more difficult when patients are mentally incapacitated but did not previously give instructions for care. (See 'Methods for making decisions' above.)

Since many patients will lose capacity at the end of life, clinicians should engage their patients in advance care planning discussions. Not only can they clarify the identity of the surrogate decision maker, but they can also provide guidance to the surrogate. (See 'Decision-making capacity' above and 'Surrogate decision makers' above.)

ACKNOWLEDGMENT — The editorial staff at UpToDate would like to acknowledge Ezekiel J Emanuel, MD, PhD, who contributed to an earlier version of this topic review.

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Topic 2207 Version 33.0

References

1 : Seven legal barriers to end-of-life care: myths, realities, and grains of truth.

2 : Defensive medicine among high-risk specialist physicians in a volatile malpractice environment.

3 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

4 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

5 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

6 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

7 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

8 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

9 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

10 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

11 : Is There a Role for Law in Medical Practice When Withholding and Withdrawing Life-Sustaining Medical Treatment? Empirical Findings on Attitudes of Doctors.

12 : A review of the ethical and legal aspects of terminating medical care.

13 : A review of the ethical and legal aspects of terminating medical care.

14 : A review of the ethical and legal aspects of terminating medical care.

15 : A review of the ethical and legal aspects of terminating medical care.

16 : Legal briefing: voluntarily stopping eating and drinking.

17 : Legal briefing: voluntarily stopping eating and drinking.

18 : Legal briefing: voluntarily stopping eating and drinking.

19 : Legal briefing: voluntarily stopping eating and drinking.

20 : Legal briefing: voluntarily stopping eating and drinking.

21 : Legal briefing: voluntarily stopping eating and drinking.

22 : Clinical practice. Assessment of patients' competence to consent to treatment.

23 : Cognitive models that predict physician judgments of capacity to consent in mild Alzheimer's disease.

24 : Advance directives and outcomes of surrogate decision making before death.

25 : Legal fundamentals of surrogate decision making.

26 : Advance directives: The elusive goal of having the last word.

27 : The POLST (Physician Orders for Life-Sustaining Treatment) paradigm to improve end-of-life care: potential state legal barriers to implementation.

28 : Delegalizing Advance Directives - Facilitating Advance Care Planning.

29 : Delegalizing Advance Directives - Facilitating Advance Care Planning.

30 : Medical Decision-Making for Adults Who Lack Decision-Making Capacity and a Surrogate: State of the Science.

31 : Life support for patients without a surrogate decision maker: who decides?

32 : AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults.

33 : AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults.

34 : AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults.

35 : AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults.

36 : AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults.

37 : Proxy decision making for incompetent patients. An ethical and empirical analysis.

38 : The accuracy of surrogate decision makers: a systematic review.

39 : Agreement between patients and their self-selected surrogates on difficult medical decisions.

40 : Substituted judgment: how accurate are proxy predictions?

41 : Substituted judgment: the limitations of autonomy in surrogate decision making.

42 : The ethical concept of "best interest".

43 : The ethical concept of "best interest".

44 : The ethical concept of "best interest".

45 : Legal myths about terminating life support.

46 : Toward shared decision making at the end of life in intensive care units: opportunities for improvement.

47 : Systematic review: the effect on surrogates of making treatment decisions for others.

48 : A Randomized Trial of a Family-Support Intervention in Intensive Care Units.

49 : Patients with next-of-kin relationships outside the nuclear family.

50 : Patients with next-of-kin relationships outside the nuclear family.

51 : Surrogate Decision Making for Patients Without Nuclear Family.

52 : Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis.

53 : Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis.

54 : Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis.

55 : Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis.

56 : Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis.

57 : Association between advance directives and quality of end-of-life care: a national study.

58 : Informed demand for "non-beneficial" medical treatment.

59 : An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units.

60 : An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units.

61 : An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units.

62 : The problem with futility.

63 : Why physicians cannot determine if care is futile.

64 : The rise and fall of the futility movement.

65 : Use of the medical futility rationale in do-not-attempt-resuscitation orders.

66 : Meeting physicians' responsibilities in providing end-of-life care.

67 : Medical futility: its meaning and ethical implications.

68 : Resolution of futility by due process: early experience with the Texas Advance Directives Act.

69 : Texas Advance Directives Act: nearly a model dispute resolution mechanism for intractable medical futility conflicts.

70 : Texas Advance Directives Act: nearly a model dispute resolution mechanism for intractable medical futility conflicts.

71 : Texas Advance Directives Act: nearly a model dispute resolution mechanism for intractable medical futility conflicts.

72 : Texas Advance Directives Act: nearly a model dispute resolution mechanism for intractable medical futility conflicts.

73 : Texas Advance Directives Act: nearly a model dispute resolution mechanism for intractable medical futility conflicts.

74 : Texas Advance Directives Act: nearly a model dispute resolution mechanism for intractable medical futility conflicts.

75 : Compliance with advance directives. Wrongful living and tort law incentives.

76 : Clinicians may not administer life-sustaining treatment without consent: civil, criminal, and disciplinary sanctions.

77 : Legal Briefing: New Penalties for Ignoring Advance Directives and Do-Not-Resuscitate Orders.

78 : Legal Briefing: New Penalties for Ignoring Advance Directives and Do-Not-Resuscitate Orders.

79 : Legal Briefing: New Penalties for Ignoring Advance Directives and Do-Not-Resuscitate Orders.

80 : Dialogue: the core clinical skill.

81 : Physician-patient communication. The relationship with malpractice claims among primary care physicians and surgeons.