Palliative Care: Ethics and the Law

Ryan R. Nash

This material is also covered with modification and greater depth in Nash RR, Nelson LJ. UNIPAC 6: Ethical and Legal Dimensions of Care. 4th ed. AAHPM; 2012.

INTRODUCTION TO ETHICS

Ethics is the study of right and wrong, good and evil. Ethics assumes that such categories exist, although these categories are not always dichotomous. Ethics does not always deal with absolutes; instead, it entails trying to find the better option on the moral gradient. The ultimate determination of right and wrong, or the meta-ethical claim, is based on how one knows truth and how one values or orders life. Therefore, the ultimate ethical determination is based on epistemology. Epistemologies are diverse. Various philosophical theories and religions have made claim to define the good, the evil, virtue, and vice. However, they often do not agree. One may place the highest value on self-determination and freedom, another on equal opportunity for all, and yet another on selfsacrifice and love of another. When there is no agreement on where humankind comes from, where it is going, and what in life is most valuable and good, then agreement on what is ethical is all but impossible. Even if two persons from competing epistemologies find that they agree on an ethical claim they may do so for very different reasons. Thus, making a claim that something is ethical or unethical begs the question, “according to whose ethics? and why?” In a pluralistic society such as that of the United States, it is expected that two may meet as moral strangers (1), not having an agreed upon epistemology or understanding of right and wrong. In such as anticipated scenario, how are we to “do ethics” and determine the best path forward? We strive to come to an agreement of mutual consent, a modus vivendi (way of life). This is not a claim that we are agreeing on the ultimate ethic, nor is it saying that all of ethics is personal and relative. It is claiming that we come to an agreed upon operation that allows for variation on points of disagreement. Mistakenly many in health care use the phrase ethical or unethical as an ultimate truth claim and pretend, perhaps unknowingly, that all ethics is agreed upon. Much in ethics is not agreed upon. Thus, how we “do ethics” in health care is more procedural, based on agreements and precedence over time. Though consensus statements exist (2, 3), we fail to give ethics and ultimate truth claims their due if we think our laws, procedures, or professional statements are the ultimate source of right and wrong, good and evil. This chapter will not focus on the ultimate meta-ethical claims or differing epistemological approaches to finding the good but deals with the practical approach of doing bedside clinical medical ethics, describing the usual modus vivendi and shared wisdom of those that have wrestled with what to do in the past. It will not attempt to solve the legion of disagreements that do and will exist.

DIVERSE FOUNDATIONS

Many ethical systems or approaches have been promoted. Some of these are summarized in Table 58.1. However, these ethical systems are often an attempt to identify or at least define the ultimate ethical nature of an action. As previously mentioned, all attempts to reach the ultimate ethical judgment depends on presuppositions of how life is valued or ordered. These systems do give focus for reflection and are helpful in ethical discourse by giving a shared vocabulary. However, at the bedside they too often fail to give sufficient clarity and direction. For instance, how does one decide if differing ethical principles conflict? Should autonomy or beneficence receive greater ethical weight?

PALLIATIVE CARE TERMS

To establish a common ground of meaning, palliative care terms are defined in Table 58.2. These terms reflect hospice and palliative medicine’s emphasis on improving quality of life for patients with serious disease through management of pain and other distressing symptoms. Misunderstanding of these terms often leads to needless ethical conflicts or false dilemmas.

RESPONSIBILITY AND OBLIGATIONS OF PALLIATIVE CARE

Related to the definition of palliative care is its responsibilities. It has been proclaimed that the role of medicine is to restore health or to fight disease and death. More realistic views have emphasized the sentiment attributed to a number of famous physicians including Sir William Osler and Edward Trudeau, “to cure sometimes, to relieve often, to comfort (or to care) always” (4,5). Palliative care professionals have understood this later call and have championed it. However, some have taken the call for comfort and relief of all suffering as responsibilities and obligations. Although relief of suffering is a worthy goal and should be attempted with great effort and skill, the hospice and palliative medicine specialist’s responsibility is not to perfectly relieve
all suffering but to use the best of one’s knowledge, skill, and abilities to provide the best possible care (6). Palliative care teams also must appreciate the finitude of medicine. Not only is medicine not the source of eternal life but it often fails at being the source of perfect relief of suffering or “a good death.” Attempts to “totalize” the dying experience with medicine can lead to actions held by many to be wrong or evil in the name of compassion (7). Ironically, palliative care providers must be reminded of the original hospice movement goals of not medicinalizing, institutionalizing, or trying to hide death.

TABLE 58.1 Selected ethical frameworks and foundations

Principle based

Focuses on the following ethical principles:

• Beneficence—promote patient well-being

• Autonomy—respect patient self-determination

• Nonmaleficence—do no harm

• Justice—protect vulnerable populations and provide fair allocation of resources

Professionalism

Professionalism involves the qualities that make a good professional or a good physician. The ways in which a practitioner is true to a standard when honoring established principles, oaths, or examples determines his or her level of professionalism.

Virtue based

Virtues defining the character of a good physician include the following:

• Fidelity to trust and promise—honoring the ineradicable trust of the patient-physician relationship

• Effacement of self-interest—protecting the patient from exploitation and refraining from using the patient as a means to advance power, prestige, profit, or pleasure

• Compassion and caring—exhibiting concern, empathy, and consideration for the patient’s plight

• Intellectual honesty—knowing when to say “I do not know”

• Prudence—deliberating and discerning alternatives in situations of uncertainty and stress

Caring based

The ethics of caring assumes that connections to others are central to what it means to be human. Caring requires empathy and compassion for patients, assuming responsibility for patients by performing actions that meet their needs and creating an educational environment that fosters caring

Respect for personhood

Respect for personhood proposes the following:

• Treatment of patients must reflect the inherent dignity of every person regardless of age, debility, dependence, race, color, or creed.

• Actions must reflect the patient’s current needs.

• Decisions must value the person and accept human mortality and medical finitude.

Humanities

Uses literature, history, the arts, and narrative to arrive at principles or sentiment of the right and wrong

Religious and cultural

Application of deep and rich contextual understandings of the good or ways of life. Such considerations may or may not be able to be reduced into philosophical categories or language. The truth claims are at times exclusive to the group.

Ethics, Law, and Practice

In giving clinical ethics advice, it is common for a clinical ethicist to address three perspectives: the legal, the professional, and the consultant’s judgment or opinion on the case. This chapter provides a suggested framework to practically
address clinical ethical decision making and describes key legal considerations and give an overview of issues important in palliative care. Hospice and palliative medicine, unlike many other specialities, has less univocity regarding many ethical issues. Thus, the chapter will not emphasize professional standards. The American Academy of Hospice and Palliative Medicine (AAHPM) has ethical statements readily available, which are frequently updated and sometimes changed (www.aahpm.org).

TABLE 58.2 Definitions associated with hospice and palliative care

Palliative care is patient- and family-centered care that anticipates, prevents, and treats burdens of disease. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient access to information and choice. Palliative care is ideally delivered by an interprofessional team including a physician, nurse, social worker, chaplain, counselor, and others. (Modified from 73 FR 32204, June 5, 2008, Medicare—Final Rule.) Palliative care deals with the burden of disease regardless of the stage of disease and attempts to encourage effective and desired interventions delivered in the right place and at the right time.

Palliative treatments are treatments and interventions that enhance comfort and improve the quality of a patient’s life. No specific therapy is excluded from consideration. The decision to intervene with a palliative treatment is based on the treatment’s ability to meet the stated goals rather than on its effect on the underlying disease. The treatments are explored and evaluated within the context of the patient’s values, symptoms, and clinical circumstances.

What palliative care is not

Palliative care is not only end-of-life care. Palliative care deals with the burden of disease regardless of the stage of disease. It includes treating patients with serious, but not necessarily life-limiting, illnesses as well as those who likely are dying.

Palliative care is not an attempt to contain medical costs or ration care. Palliative care attempts to encourage effective and desired interventions in the right place and at the right time. Palliative care has been shown to be a good steward of medical resources and sometimes is associated with cost savings, but controlling costs is not its primary aim.

Palliative care does not hasten death. In fact, many patients receiving palliative care may live longer and have opportunity to pursue additional “aggressive” or curative interventions due to enhanced symptom management, communication, and coordination of care. Appropriate pain and symptom management and addressing other burdens of disease have not been shown to hasten death.

Palliative care is not a dichotomy of care between “do everything” vs. “do nothing” or aggressive care vs. comfort care only. Palliative care helps involved parties navigate the complex range of medical choices and make the best possible medical decisions under difficult circumstances.

Palliative care is not always a choice. Most patients receiving palliative care will have a goal to live longer and have a better quality life. Many would choose life-prolonging, curative therapies if they were available and could be effective for them, but often they are not. For those with incurable disease, palliative care is an essential part of their treatment plan alongside the disease-directed therapies they continue to try.

Palliative care is not an attempt to force one definition of “the good death” upon all patients.

The Law

The law and ethics are not synonyms. We hope that our laws are ethical but history has shown that such is not guaranteed. At least theoretically, if a law were ethically wrong then one may willfully disobey the law. Further, some may suggest that we may have duty to try to change unethical laws. However, the laws we currently have throughout the United States are an attempt for a modus vivendi (mentioned in the Introduction). Laws vary from state to state and a description of each is beyond the scope of this chapter. Needless to say, it behooves all health-care professionals to know the laws of their land (8,9), as many myths and misconceptions exist (10,11,12). Failure to correct these misconceptions may result in physicians stepping outside of accepted standards of medical practice (13). Most state laws are a reaction to landmark court cases around the country that became precedence. These cases, at times, had misinformation or needless court involvement, but they have defined the current legal terrain. Upon review of state laws and landmark cases, one may be surprised how often the well-intended laws are impractical and often not followed in clinical settings.

RIGHT TO REFUSE AND RIGHT TO DIE

Two distinct but related movements occurred in end-oflife law during the recent technological age of medicine and in part a reaction against the perception of a paternalistic medicine. The right to refuse is the belief that medical care is
optional for adults with decisional capacity (or determined by their appropriate proxy decision maker). This negative or material right has become accepted in clinical care and ethical discourse and is legal precedence. Further, it is constitutive of palliative care.

The right to die movement agrees that medical care is optional and can be refused, but adds a claim or positive right for a person to choose the method, manner, and timing of death. Some advocates argue for the right to demand help in causing death from health-care professionals and systems. The right to die movement advocates assisted suicide and some types of euthanasia. The right to die has not been broadly accepted legally, ethically, or clinically. The right to die is not constitutive of palliative care.

Finally, another positive or claim right, the right to demand medical care, movement has come to the fore, as seen in several court cases (14). This right to demand is similar to the right to die (which is a type of demand) in that they are both positive or claim rights. Currently, the right to demand is mainly being considered in the context of reproductive technologies and chronic treatments such as hemodialysis. Currently, a right to demand a particular treatment is not broadly accepted in law or medical ethics.

LANDMARK CASES ON THE RIGHT TO REFUSE

The Quinlan Case¹

In April 1975, at age 21 years, Karen Ann suffered severe anoxic brain injury. Karen Ann was eventually diagnosed to be in a persistent vegetative state. She had been on a mechanical ventilator. Her father requested guardianship and requested the mechanical ventilator be removed. Mr. Quinlan’s requests were opposed by the treating physicians, the hospital, the local prosecutor, the State of New Jersey, and Karen’s guardian ad litem. The Supreme Court of New Jersey authorized the withdrawal of life support and the appointment of Mr. Quinlan as guardian for that purpose if it was concluded, after appropriate consultation with a hospital ethics committee, that there was no reasonable possibility of Karen ever emerging from a persistent vegetative state. The court also noted that this decision was consistent with Karen Ann’s and Mr. Quinlan’s Roman Catholic faith (the decision had been endorsed by their bishop).

The Supreme Court of New Jersey found that the right of Karen Ann Quinlan to refuse medical treatment, even if exercised by her surrogate or proxy, was protected by a right of privacy. The court noted that the claimed interests of the state were to preserve life and protect the right of physicians to administer treatment in accordance with their best judgment, but these interests were outweighed by the poor prognosis of the patient and great bodily invasion involved in sustaining her life. The court endorsed the use of a substituted judgment standard (i.e., allowing her guardian and family “to render their best judgment” regarding whether she would refuse the continuation of treatment if she could wake up for a few minutes and tell her family what she would want them to do before returning to her vegetative state). The court also endorsed the use of hospital ethics committees in reviewing decisions to withdraw life-sustaining treatment as preferable to court proceedings. After this decision, mechanical ventilation was removed, but Karen Ann Quinlan was able to breathe on her own (as predicted by only one expert witness). She lived for several years being fed by artificial nutrition and hydration (ANH) and died from an “overwhelming infection in 1985 without regaining consciousness” (15). Despite the expanded role for ethics committees envisioned in the Quinlan decision, few hospitals created such committees (16). The failure of hospitals to adopt ethics committees was attributed to a “reluctance to disturb the status quo, together with a sense of confusion over what an ethics committee could accomplish” (16).

The Cruzan Case²

In January 1983, Nancy Cruzan, a 25 year-old Missourian, was seriously injured in an automobile accident. When she was found lying face down, there was no detectable heartbeat or respiration, but these functions were restored at the scene by paramedics. She was taken to a hospital where she remained unconscious. Physicians implanted a gastrostomy tube with permission. Her condition subsequently was diagnosed as a persistent vegetative state. Eventually, Cruzan’s parents asked hospital employees to stop ANH administration, but hospital employees refused to accede without a court order. The trial court recognized a constitutional right to refuse life-sustaining treatment and authorized withdrawal of ANH based upon its finding that before her injury Cruzan had told a friend that if she were seriously injured she would not want to live unless she could live “halfway normally.” The Missouri Supreme Court reversed the decision of the trial court. Although the court recognized a right to refuse treatment under the common law doctrine of informed consent, it refused to recognize a constitutional right. It found strong state interest in preservation of life as expressed in the Missouri Living Will Statute. On that basis, the court found that treatment could not be terminated in the absence of a valid living will unless it could be shown by “clear and convincing evidence” that the patient would have wanted it terminated. It found that the statements relied on by the trial court were unreliable and did not meet the clear and convincing evidence standard. The US Supreme Court affirmed the decision of the Supreme Court of Missouri, holding that the state could require clear and convincing evidence of a person’s expressed wishes made while competent. While the majority opinion upheld the constitutionality of the State of Missouri’s requirement of clear and convincing evidence, it also acknowledged that “a constitutionally protected liberty interest in refusing unwanted medical treatment may be inferred from our prior decisions.” The court stated, however, that because incompetent patients need certain
protection given they cannot exercise this right of refusal, it was appropriate for the State of Missouri to impose additional safeguards in the form of the clear and convincing evidence standard in light of its interest in preserving life. After the Supreme Court’s decision, the Cruzans petitioned the trial court in Missouri, again requesting discontinuation of tube feedings. Her coworkers testified that Cruzan stated she would not like to live “like a vegetable.” Cruzan’s treating physician and court-appointed guardian also supported discontinuation of ANH. As a result, the Missouri court authorized the discontinuation of feeding, and Cruzan died shortly thereafter. The publicity surrounding this case fostered interest in advance directives and health-care proxy appointments. It also generated support for the federal Patient Self-Determination Act passed in 1991 (17), which requires some health facilities to present patients with information on advance health-care directives.

The Schiavo Case

On February 25, 1990, Theresa Schiavo suffered anoxic brain injury following a cardiac arrest as the result of a potassium imbalance. She never regained consciousness and eventually her condition was diagnosed as a persistent vegetative state. A feeding tube was inserted and ANH started, but in 1998 her husband asked a Florida state trial court for permission to remove the feeding tube. The court granted permission after determining this was what she would have wanted. At the time feeding tube removal was sought, it was clear that with ANH Terri Schiavo could continue to live for many years, but, if withdrawn, she would die in a few days. The Florida trial court authorized the withdrawal of ANH. The trial court decision was affirmed by the Florida District Court of Appeals, holding that the trial judge had properly found under the clear and convincing evidence standard that Theresa would have wanted the feeding discontinued.³ The Florida courts—applying a substituted judgment standard— authorized the withdrawal of ANH based on the assumption that she, if competent to make the decision, would have wanted it withdrawn. Schiavo and her family were Roman Catholic, so Catholic teaching was an issue in the case, bearing on the question of what she would have wanted. In the original proceedings before the trial court, a Catholic priest from the Diocese of St. Petersburg, FL, testified regarding Church teaching on the withdrawal of ANH from patients in a persistent vegetative state. Schiavo’s husband’s attorney asked the priest whether removal of ANH would be consistent with the teaching of the Catholic Church. He further asked the priest to assume, for purposes of this question, that Theresa Schiavo had told her husband she would not want to live “if she was dependent on the care of others” and further that she “mentioned to her husband and to her brother and sister-in-law that she would not want to be kept alive artificially.” The priest answered: “After all that has transpired, I believe, yes, it would be consistent with the teaching of the Catholic Church.” On cross-examination, Fr. Murphy was asked if he was familiar with Directive 58 in the 1994 Ethical and Religious Directives for Catholic Health Care Services, which states there should be a presumption in favor of providing ANH. He stated that he was familiar with Directive 58, but characterized it as providing an ideal standard; further, “You have to go back and evaluate the proportion” (18). The appellate court sided with the husband, permitting the husband to order the withdrawal of treatment. After this decision came several years of additional legal wrangling in both state and federal courts between her parents, who opposed removal of the feeding tube, and her husband, who sought its removal. The parents continued to contend that Theresa was in a minimally conscious state rather than in a persistent vegetative state and that in light of her Catholic faith she would want the feeding continued. On October 15, 2003, Theresa’s feeding tube was removed. Six days later, the Florida legislature passed a law allowing Governor Jeb Bush to order that the feeding be resumed. The feeding tube was reinserted, but this law subsequently was declared unconstitutional by the Florida Supreme Court.⁴

Theresa Schiavo died on March 31, 2005, approximately 2 weeks after the removal of her feeding tube pursuant to a court order (19).

The Schiavo case focused attention on Catholic teaching on withdrawal of ANH from patients in a persistent vegetative state and eventually resulted in a revision of Directive 58 of the Ethical and Religious Directives for Catholic Health Care Services (see box below).