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ETHICAL AND LEGAL ISSUES IN PALLIATIVE CARE MARY S. MCCABE AND NESSA COYLE OBJECTIVES: To provide foundational knowledge about approaches to ethical decision-making that arise as part of palliative care of cancer patients and their families. DATA SOURCE: Journal articles, research reports, state and federal regulations, professional codes of ethics and state of the science papers.
CONCLUSION: More and more, cancer deaths occur after a long progressive illness, requiring ongoing goals of care discussion and a focus on joint decision-making. No matter how diverse the community or how advanced the healthcare setting, the needs, preferences, and values of the patient and family will continue to be at the core of palliative care.
IMPLICATIONS
FOR NURSING PRACTICE: The increasingly complex healthcare environment makes it essential that nurses have an understanding of medical ethics and relevant federal and state laws so that this knowledge can be applied to the many issues arising in palliative and end-of-life care.
KEY WORDS: Palliative care, bioethics, end-of-life conflict, nursing codes of ethics
A
basic knowledge of ethics, relevant federal and state law, and how these intersect with palliative care and end-of-life care provides a necessary framework for oncology nurses working in an increasingly Mary S. McCabe, RN, MA: Director, Survivorship Program, Chair, Ethics Committee, Memorial Sloan Kettering Cancer Center, New York, NY. Nessa Coyle, ACHPN, PhD, FAAN: Consultant in Palliative Care and Bioethics, Memorial Sloan Kettering Cancer Center, New York, NY. Address correspondence to Mary S. McCabe, RN, MA, Memorial Sloan Kettering Cancer Center, 1275 York Ave., Room 2101J, New York, NY 10065. e-mail: [email protected] Ó 2014 Elsevier Inc. All rights reserved. 0749-2081/3004-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2014.08.011
complex healthcare environment. The National Consensus Project for Quality Palliative Care emphasizes this aspect of care in Domain 8: Ethical and Legal Aspects of Care, where it states in Guideline 8.1 ‘‘The patient or surrogate’s goals, preferences, and choices are respected within the limits of applicable state and federal law and within current accepted standards of medical care and professional standards of practice. These goals, preferences, and choices form the basis for the plan of care.’’1 In the United States, as well as other technologically advanced countries, the majority of cancer deaths occur after a long and progressively debilitating illness. Co-morbidities are common and symptoms with suffering tend to be cumulative. Sudden deaths, although they do occur, are much less frequent. The combination of advances
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in science and medical technology, concerns about paternalism, emphasis on patient autonomy, and reluctance to offer a clinical judgment in guiding the decisions of patients and their families have complicated the picture. Healthcare providers have the means to prolong life, but also the means to prolong the dying process. This double-edge sword has led to both benefits and challenges for society and an implicit responsibility to provide care that is clinically and ethically appropriate.2 Clinical judgment and effective communication are essential ingredients in the ethics of care. Illness with a long trajectory provides both the opportunity and the obligation for nurses and other healthcare professionals to have ongoing conversations with patients and their families about their desire for present and future healthcare interventions that align with their values, beliefs, and goals. Presenting the patient and or family with the opportunity to have these conversations (for example, at key points in a disease trajectory, such as at time of initial diagnosis or when the disease has progressed and goals of care need to be revisited) is an ethical obligation. The need to have these conversations becomes even more urgent when the patient presents with advanced disease.2-4
CASE
An 88-year-old orthodox Jewish man presents with recently diagnosed thyroid cancer and extensive pulmonary metastases. He is not a candidate for chemotherapy or surgery, but radiation therapy is being considered for palliation. The patient, who is alert but confused, is admitted to the hospital for dyspnea. He has a devoted, extended family that communicates well with each other. His wife is deceased and his two daughters are his healthcare agents. They both defer, however, to one of the patient’s sons-in-law (who is a Rabbi) for decisions about care. An ethics consult is called by the primary care team for assistance in addressing the patient’s code status, as well as to answer the family’s questions about the institutions policy regarding Jewish Law around end-of-life care. After meeting with the clinical team, the ethics consultant speaks with the daughters and one son-in-
law and then meets with the son-in-law who is the Rabbi. A very extensive discussion is held regarding what needs to be done to fulfill Jewish law and how this could be done without causing the patient any additional suffering. From the Rabbi’s perspective, DNR may be appropriate, but nutrition, hydration, and oxygen need to be provided to the patient. The consultant discusses what can be done to fulfill the spirit of these requirements. It is explained that the patient is at risk for aspiration pneumonia and that oral feeding may no longer be safe. The risks associated with tube feedings are also explained. The Rabbi does not question this clinical judgment and agrees that the nutrition and hydration requirements can be fulfilled with intravenous fluids, if needed. The question of intubation without cardiac resuscitation is raised. It is explained that intubation is uncomfortable and that the patient would in all likelihood need to be sedated afterwards. The Rabbi states that he does not want his father-in-law to suffer and that the patient himself had expressed that wish. After extensive discussion, he states that if the patient stops breathing or his heart stops, ‘‘it will be God’s wish and the clinical staff should not interfere.’’ The family is in agreement. The patient’s condition deteriorates over the next few days and he dies peacefully with his family at the bedside. Comment – respect for the family, their values, and traditions, identifying the decision-maker, and accommodations on both sides facilitated this man’s peaceful death.
CONTEXT AND CULTURE MAKE A DIFFERENCE Although the tenets of bioethics–doing good, avoiding harm, respecting people and their communities, and justice–are of concern to every culture and society, how they are conceptualized is grounded in the moral traditions and philosophy of a particular society and culture, as reflected in the above case. For example, many cultures do not share the primacy of the value of individualism and individual autonomy.5,6 The family as a whole, rather than the individual, or a religious leader, as
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illustrated above, may make the important healthcare decisions. In addition, truth telling in the setting of advanced disease may be seen as doing harm rather than doing good. The norms of a society evolve and change, however, and multiple subcultures may be present in one society and indeed within one family. In some cultures, societies, and religions, moral distinctions differ from the dominant culture. The following examples illustrate end-of-life situations viewed through the lens of ‘‘Western’’ bioethics, where no moral distinctions are made: 1) Withholding versus withdrawing treatment is not morally distinct. A justification for not starting a treatment is also sufficient for stopping it. 2) Artificial nutrition and hydration and other life-sustaining technology such as a ventilator are medical treatments, and as such can be withheld or withdrawn. 3) The right to refuse treatment is not dependent on the type of treatment. A person with capacity has the right to refuse any or all treatment.6 In addition, The Principle of Double Effect (ie, intended versus unintended but foreseeable consequences of an action) is relevant to both bioethics and palliative care. For example, a symptomatic patient at end-of-life may require increasing doses of analgesics to control pain. Although escalating opioid doses in response to the level of pain or dyspnea does not hasten death in most patients, it may do so in a specific case. To evoke the principle of Double Effect, the act must be morally good or neutral (eg, controlling pain or dyspnea) the good effect is intended (relieving suffering); the bad effect is merely foreseen as a potential (hastening death); the bad effect is not the means to the good effect (intent to kill the patient to relieve the suffering); and proportionality (the good trying to achieve outweighs the bad that might happen) – this may vary based on goals of care.6,7 Ethical issues at end-of-life are emotionally loaded and when cultural or spiritual values are in opposition to the dominant cultural norms, ethical conflicts may arise. Because of these as well as other factors, there is a natural interface between ethics and palliative care.2,8
ETHICS AT THE BEDSIDE Although the patient and family is the unit of care in palliative care and end-of-life care, the healthcare provider’s primary obligation is to the patient. This obligation to the patient comes into
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play in the following situations: the patient and family disagree on the goals of care; the family and patient disagree on code status; the family attempts to override the patient’s advance directives; the family attempts to interfere with symptom management, especially around the use of opioids; the family does not want the patient to know their diagnosis (‘‘don’t tell mama’’); or the family’s voice drowns out that of the patient, who’s voice is lost.9-11 The importance of nurses’ moral sensitivity and advocacy in recognizing and addressing these issues is clear.12,13
CASE
The patient is a 76-year-old man who was diagnosed at a community hospital with neuroendocrine cancer with metastases to the liver. He began chemotherapy at the facility, but this was stopped because of urinary retention, severe gout, and dehydration. His functional status quickly declined and he became severely debilitated. The patient and his family sought a second opinion at a comprehensive cancer center regarding his treatment options. Before the scheduled visit the patient’s daughter called to request that the staff not engage the patient in any discussions regarding his diagnosis, treatment options, and prognosis, and that all discussion and disclosure of information be directed to her and other members of the family. An ethics consultation was requested by the team to discuss how best to deal with this situation. The ethics consultant explained that in the matter of truth-telling the clinician’s responsibility is primarily to the patient and secondarily to the family, although cultural issues may be relevant. The consultant recommended that the physician and office practice nurse first meet with the patient alone to determine his true wishes regarding disclosure of his healthcare information and then discuss his preferences with him, his daughter, and other family members together during an office visit. This approach allowed the patient to express his preference for full disclosure but with the desire to have his daughter included in important messages and decisions. During the clinic visit, with his daughter present,
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the patient clearly stated that he wanted full disclosure on all issues. The attending physician was thus able to discuss the incurable nature of the patient’s disease, goals of care, and specific aspects of staging and sites of metastases. The discussion was meaningful and the patient’s daughter had no further objections once the patient clearly stated his wishes with his family present.
Comment – Respect for autonomy gives the patient the right to receive full disclosure about their medical condition but also the right not to be told this information but to have it directed to another person. A recent ethnographic study explored the context in which ethically difficult situations arise. Nurses reported challenges such as ‘‘administering treatments that cause suffering, being honest without removing hope, and considering the risks of speaking up.’’10 In addition, they described nine types of ethically difficult situations: end-of-life situations with futility as a major concern; end-of-life situations with patient autonomy as a primary issue; fidelity to RN obligations but medical team not listening; end-of-life situation with honesty about prognosis a concern; patient capacity to provide informed consent for clinical trial; pain management when drug-seeking behavior is suspected; adolescent patients with cancer above age 18 years but parents continue to make all decisions; mental health capacity to comply with complex treatments; justice issues with insurance company refusal to cover treatment.10,11
THE HISTORICAL INFLUENCE ON PALLIATIVE CARE PRACTICE Although moral principles should guide the professional behavior and decision-making of all healthcare providers, history has shown that it is, unfortunately, necessary to set out ethical standards in the law to require their consistent applica-
tion by all.14 One of the most important examples for why the coupling of ethics and law has been necessary can be traced back to the Nuremberg trials of Nazi physicians and researchers who had subjected concentration camp prisoners to cruel experiments without their consent and knowledge. The conclusions of this Military Tribunal, which became known as the Nuremberg Code, set forth 10 ethical principles regarding human experimentation and established the moral standard that the ‘‘voluntary consent of the human subject is absolutely essential.’’15 More than any previous ethical code for the conduct of research, it was remarkably specific in requiring free choice. Building on this precept of respect for persons, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research issued The Belmont Report in 1979. This code set out three principles, or prescriptive judgments, that are relevant to both clinical research and clinical care in our Western cultural tradition: respect for persons, beneficence and justice.16 These principles continue to be applied today to the identification and assessment of ethical issues in palliative care, as highlighted in the cases included in this article. Then through the courts, two important cases highlighted the fact that there are limits to physician authority and expanded the concept of surrogate decision-making and the right to refuse treatment. In 1976, the New Jersey Supreme Court in the case of Karen Ann Quinlan gave the patient’s father the right, as the surrogate decision-maker, to choose a physician who would support his desire to remove the ventilator, thus allowing for the withdrawal of ventilator support in a permanently unconscious patient.17 In 1990, in the Nancy Cruzan case, the US Supreme Court decision allowed for the discontinuation of artificial nutrition and hydration (both were categorized as medical treatment), also in a permanently unconscious, young woman.18 Both cases set out the palliative care concepts we use today; respect for the patient’s right to refuse treatment and acknowledgment of the rights of surrogates to make decisions for patients when they no longer have capacity to make medical decisions for themselves.
THE LAW AND THE ETHICS OF HEALTHCARE PLANNING In recent years, the historical precedence established for the ‘‘respect for persons’’ concept
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continues with considerable focus on the rights of patients as ‘‘autonomous agents’’ to make their own healthcare decisions. Alongside this movement has been a parallel effort to assure that the rights of patients are protected even when they no longer have the capacity to make healthcare decisions. Both federal and state laws have continued to focus on protecting these rights. The Patient Self Care Determination Act, passed by Congress in 1990, requires that hospitals and other healthcare institutions provide information about advance healthcare directives to adult patients upon their admission to the healthcare facility.19 The intent of the law is to ensure that patients can make their own healthcare decisions, accept or refuse treatment, and communicate their preferences for future care should they become incapacitated through an advance directive. More recently, states passed legislation supporting the use of advance directives called either Medical Orders for Life Sustaining Treatment (MOLST) or Physician Orders for Life Sustaining Treatment (POLST).20 Each of these documents is a tool to communicate the preferences developed by a patient in conjunction with the healthcare team. All but seven states and the District of Columbia currently have or are developing such laws.20
Resuscitation Decisions Cardiopulmonary resuscitation (CPR) was initially developed for acute illnesses, such as myocardial infarctions, but CPR has now become a standard intervention (regardless of diagnosis) unless there are specific orders to the contrary. The lack of a DNR order for a terminally ill patient leads to ethical conflicts for the healthcare team because CPR is almost never successful in these individuals.22 Understanding the reasons for the reluctance to permit a DNR order is essential. There can be religious or cultural reasons that patients and their families request resuscitation, but there also may be misunderstandings about what such a procedure entails and whether the DNR restricts other care of the patient. For some patients and families, they are not making the decision, but rather it is being made by a religious figure who guides the decision-making, thus making it critically important to engage this key figure in the discussion. Patients and families may also fear that DNR translates into ‘‘Provide No Care’’ and once the DNR is in place, the patient will no longer be turned or bathed and all other interventions will be stopped, including supportive care.21,22 Through compassionate and sensitive communication, these concerns can be addressed and decisions made that are in keeping with the values of the patient.
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Fluids and Nutrition Withholding fluids and nutrition at the end-oflife is an especially sensitive issue because food and hydration are such essential human needs and are central to the social interactions in many cultures. Family members, in particular, may become distressed when their request for tube feedings are denied in the dying patient, and they may become angry when counseled to not give food or liquids orally to a dying patient at risk of aspiration. In the first case, the family may wrongly think that the nutrition being denied will prolong survival; in the second case, the family may feel they are being forbidden to perform the one remaining act of caregiving that they can still provide to their loved one.23,24 In both cases, a sensitive approach to education and counseling is important. Both medical and nursing associations, along with palliative care organizations, support the withholding of artificial nutrition and hydration at the end-of-life, except in select patients. However, the application of these statements requires that the nurse is knowledgeable
Increasingly, as patients and families are involved in healthcare decisions, value conflicts arise when there are differences in the desired plan of care. Although these differences are most often attributed to conflicts between clinicians and patients, they may also exist between healthcare providers and healthcare teams. Regardless of the parties involved, the issues causing the conflict are characterized by: attempting to discern and make the ‘‘right’’ decision that benefits the patient, and creating a supporting framework about what makes a particular decision or a particular action the ‘‘right’’ choice.21 The areas for dispute are extensive, such as brain death determination by neurologic criteria, terminal sedation, voluntary stopping eating and drinking at the end-of-life, artificial nutrition and hydration, resuscitation orders, euthanasia, and physician-assisted suicide. Each of these topics deserves attention and extensive discussion, but two that are particularly relevant to nursing practice are highlighted.
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about the risks and benefits of such requested interventions and can explain their being withheld in terms of promoting the good of the patient.25
CREATING AN ETHICAL PRACTICE FRAMEWORK Ethical care is an obligation of each individual nurse, and, in support of this responsibility, nursing codes of ethics form a framework that unite individual nurses into a caregiving community with ideals of professional conduct. The International Council of Nurses (ICN) has put forth their code, which states in its preamble: ‘‘Nurses have four fundamental responsibilities: to promote health, to prevent illness, to restore health, and to alleviate suffering. The need for nursing is universal.’’ To properly carry out these responsibilities, there are four ethical standards of conduct in the ICN code and they relate to: people requiring care, clinical practice, professionalism, and co-workers.26 In addition, the American Nurses Association has a code of ethics and the tenets of this code consist of nine statements, which describe the commitment of nurses to patients, duty to self and others, and duties beyond individual patient encounters.27 These codes of nursing ethics have two principal functions as put forth by Benjamin and Curtis.28 First, they set out an enforceable standard of minimal conduct that allows the profession to discipline those who fall below this minimum standard; and second, they serve as a guide for individuals in deciding on actions in particular situations.28 These codes are not merely a set of rules, but rather they are a reminder to nurses of the special responsibilities we have in caring for the sick and highlight the responsibility we have to use our knowledge and skills to help individuals and families when they are at their most vulnerable. Most importantly, the professional ideals expressed in these codes must be supported and actualized to be of value. Such actualization can occur in a number of ways, at the individual level, at the unit work level, at the site of healthcare delivery, and at the institutional level. At all levels, actualization requires ethical analysis and reasoning specific to the situation at hand. One important way in which these values can be actualized is through the function of institutional ethics committees. Such committees are very common in the US and throughout the world, and the need for them reflects the complexity of healthcare today, in particular oncology care. These committees were first organized in the mid 20th century as
institutional efforts to bring a formal ethical perspective to clinical issues. However, they fell short of this goal and were described as ‘‘a politically attractive way for moral controversies to be procedurally accommodated.’’29 They were usually small groups focused on particular issues, such as making decisions about involuntary sterilization, abortion committees that evaluated requests from women who wished to terminate their pregnancies, and the selection of individuals who would receive hemodialysis among candidates with end-stage renal disease.30 Fortunately, over time, clinicians, clergy, and administrators came to see the value for interdisciplinary deliberations about issues related to the rapid explosion of high-tech care, especially its use at the end of life. In fact, in 1976, the Supreme Court of New Jersey recommended in its decision in the Karen Ann Quinlan case that hospitals have an ethics committee to deal with termination of life-sustaining treatments.17 The broader intent of this recommendation, which evolved over time, was to have a group to resolve healthcare conflicts with ethical dimensions within the healthcare system rather than resolving them in the courts. More recently, the Joint Commission on Accreditation of Healthcare Organizations has required since 1992 that each healthcare institution have a standing mechanism to address ethical issues and resolve disputes.31 Thus, in the beginning, ethics committees focused primarily on ethical conflicts related to goals of care. Over time, the activities of ethics committees have expanded to include three defined functions: consultation, education, and policy development/review, which then provide a broad opportunity to assure that the institution develops and encourages a culture of moral agency with ethical obligations that guide practice. To be effective in these two clinical domains of consultation and education, it is critically important that nurses know about and be active members of ethics committees. Because so much of oncology care is provided by multidisciplinary teams, it is not only natural but necessary for nurses to be part of the committee function and to be confident in calling on the ethics committee to assist in clinical situations when ethical issues arise. However, such confidence and expertise does not arise overnight, it requires the identification and commitment of nursing leadership to encourage and even request committee participation, if need be, and to support nurses who speak up about clinical situations where there is ethical conflict.
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ETHICS CONSULTATION Hospitals have increasingly incorporated consultation into the role of ethics committees and, by 2002, 81% of all US hospitals had an ethics consultation service of some kind.32 As one might expect, the majority of these consults deal with conflict, most often at the end of life. But what is driving this need for ethics consults? For one thing, the healthcare system has become incredibly complex and our approach with patients is to engage them in joint decision-making and have them more actively involved in their care. More than ever before, patients and families face choices that are difficult to understand and they are asked to make decisions they often feel unprepared to make. In addition, the coordination of care among providers is often lacking because each specialist is focused on a limited set of medical problems and communication with the primary care provider may be quite limited. Patients also have less wellestablished relationships with their physicians and these physicians have less time to spend with their patients at a time when clear, understandable communication is essential. But communication and coordination problems are not the sole and inevitable causes of ethics consults. There can also be real disagreements about what constitutes medically beneficial care, especially as our country becomes increasingly diverse. An ‘‘ethics facilitation’’ approach as described in Core Competencies for Health Care Ethics Consultation: The Report of the American Society of Bioethics and Humanities offers a balanced approach to decision-making when disagreements arise, as they will, and sets out a template for a respectful dialogue among the parties involved.33
ETHICS EDUCATION One of the most important opportunities for nurses to reduce moral distress associated with patient care is to develop a practice environment of ethical inquiry so that problematic issues can be identified, addressed, and resolved (Table 1).34 Certainly, such an effort requires a positive ethical climate at the organizational level, but it can truly be supported and enhanced by nurses themselves. A number of nursing-led forums can be practically and effectively instituted. For example, nurses on a particular unit or practice site can take the lead in setting up multidisciplinary debriefings after a
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TABLE 1.
Components of an Ethical Inquiry in Complex Clinical Situations Patient/family issues Socially and psychologically what issues are driving the situation? Whom do they involve? Staff issues Is there disagreement about medical management? Is some other interstaff conflict being played out? Joint issues What is the relationship between the staff and the patient and family? What is the understanding of goals of care by different participants? Ethical issues Is there an ethical dilemma? A true conflict of values that cannot be reduced to any other problem or misunderstanding? Are there cultural or religious issues at play here? Legal issues Are there laws or regulations, federal, or state that impact the case? Could any of these create a potential clinical/ethical conflict? What is the nature of that conflict? (Adapted and reprinted with permissions from Lederberg.34)
particularly difficult case. It can be more than peer support with particular focus on the ethical issues at play, how they were addressed (or not), and what would work better in the future. For example, a debriefing centered on a case where the family was requesting that the patient not receive pain medication at the end of life, despite the assessment by the nurses that the patient was in significant pain, could focus on the professional obligation to relieve suffering, as well as the legal and clinical issues of the case. In addition, an ethics curriculum can be developed by an interested group that can be instituted as part of an already existing inservice program, nursing grand rounds, or unit-based training. Such a curriculum could be simple and include such topics as: truth telling, surrogate decision-making, and medical futility. It takes the interest, commitment, and enthusiasm of one nurse to begin.
THE PARTNERSHIP OF PALLIATIVE CARE AND THE ETHICS COMMITTEE Increasingly, palliative care services are becoming incorporated into institutions and practices, thus becoming a standard in the care of patients along the care continuum. As this occurs,
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the palliative care specialists and generalists interact with the ethics committee in such a way as to mitigate the need for consults and to serve as expert advisors in the development and dissemination of ethics education programs. The National Consensus Project for Quality Palliative Care has defined palliative care: ‘‘Provides comprehensive management of physical, psychosocial, spiritual and existential needs of patients (and families) that are facing a life limiting illness.’’1 In distinction, the American Society of Bioethics and Humanities Task Force on the Core Competencies for Ethics Consultation has defined Ethics Consultation as: ‘‘A service provided by an individual or a group to help patients, families, surrogates, healthcare providers or other involved parties address uncertainty or conflict regarding value-laden issues that emerge in healthcare.’’33 As one can see, the roles of each group are separate and distinct, but certainly complementary. One serves as a limited consult service and the other as a service providing ongoing care. Each is better because of the other in serving patients, families, and clinical staff. In oncology, many ethically complex issues at end of life fall under the rubric of both palliative care and bioethics, and both services may be involved in a particular case. Often, an ethics consultation may result in a suggested palliative care referral, and if palliative care is already involved in a complex situation they may recommend an ethics consultation to help untangle the situation. In a review of an ethics consultation database from two academic institutions that related to adult patients with
cancer, 41% of the patients had a palliative care consultation as well as an ethics consultation.8
CONCLUSION New medical issues in oncology are increasing and, as a result, there will continue to be ethical challenges in clinical care. The virtual explosion of technology and advances in molecular biology now permit such things as genetically driven treatment plans for many cancers and are rapidly expanding our knowledge of individual and family cancer susceptibility through genome and exome analyses, often outpacing our ability to act on this information. The ability of computers to analyze mass amounts of patient data is also driving the growing focus on learning healthcare systems, which is blurring the distinctions between research and clinical care. At the same time our country is becoming more and more diverse, thus requiring greater sensitivity to religious and cultural issues around clinical decision-making and end-of-life care. Yet, at the center of all this change and scientific advancement is the patient. No matter how sophisticated the technology, how advanced the healthcare delivery system, or how diverse our community, respect for the needs, values, and preferences of the patient and family will continue to be at the core of palliative care. Our ethical responsibility as nurses will continue to be the obligation to establish the trust of our patients and families and apply the principle of beneficence in reducing their suffering, especially at the end of life.
REFERENCES 1. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. Ed 3. Pittsburgh, PA: National Consensus Project for Quality Care; 2013. 2. Coyle N. Palliative care, hospice care and bioethics - a natural fit. J Hospice Palliat Nurs 2014;16:6-12. 3. Wiegand D, Russo MM. Ethical consideration. In: Dahlin CM, Lynch MT, eds. Core curriculum for the advanced practice nurse. Ed 2. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2013: pp. 39-59. 4. Dahlin CM. Communication in palliative care: and essential competency for nurses. In: Ferrell BF, Coyle N, eds. Oxford Textbook of Palliative Nursing. Oxford: Oxford University Press; 2010: pp. 107-133. 5. Prince-Paul M, Daly BJ. Ethical considerations in palliative care. In: Ferrell BF, Coyle N, eds. Oxford textbook of palliative nursing. Oxford: Oxford University Press; 2010: pp. 1157-1175.
6. Beauchamp TL, Childress JF. Principles of biomedical ethics. Ed 6. New York: Oxford University Press; 2008. 7. Schwarz JK, Tarzian AJ. Ethical aspects of palliative care. In: Matzo M, Witt-Sherman D, eds. Palliative care nursing: quality care to the end-of-life. New York, NY: Springer; 2010: pp. 119-141. 8. Shuman AG, Montas SM, Barnosky AR, Smith LB, Fins JJ, McCabe MS. Clinical ethics consultation in oncology. J Oncol Pract 2013;9:240-245. 9. Gaudine A, Lefort SM, Lamb M, Thorne L. Ethical conflicts with hospitals: the perspective of nurses and physicians. Nurs Ethics 2011;18:756-766. 10. Pavlish C, Brown-Salzman K, Jakel P, Rounkle AM. Nurses’ responses to ethical challenges in oncology: an ethnographic study. Clin J Oncol Nurs 2012;16:592-600. 11. Pavlish C, Brown-Salzman K, Jakel P, Fine A. The nature of ethical conflicts and the meaning of moral community in oncology practice. Oncol Nurs Forum 2014;1:130-140.
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12. Schluter J, Winch S, Holzhauser K, Henderson A. Nurses’ moral sensitivity and hospital ethical climate: a literature review. Nurs Ethics 2008;15:304-321. 13. Schlairet MC. Bioethics mediation: the role and importance of nursing advocacy. Nurs Outlook 2008;57:185-193. 14. Faden RR, Beauchamp TL. A history and theory of informed consent. New York, NY: Oxford University Press; 1986: pp. 151-237. 15. United Sates v Karl Brandt. Trials of war criminals before the Nuremberg military tribunals under control council, Law No.10, Vols. 1 and 2, ‘‘The Medical Case’’ (Military Tribunal 1). Washington, DC: US Government Printing Office; 1947: pp. 1948-1949. 16. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont report: ethical principles and guidelines for the protection of human subjects of research. Washington, DC: Government Printing Office; 1979. 17. In re: Quinlan, 137 N.J Super. 227, 348 A. 2d 801 Ch. Div., 1975. 18. Cruzan vs Director, Missouri Dept. of Health, 110 S. Ct. 2841, 1990. 19. Patient Self Determination Act, Omnibus Budget Reconciliation Act of 1990, Pub L No. 101-508, sec.4206 and 4751, 105 Stat.1388, 1388-115, and 1388-204. 20. Physicians Orders for Life Sustaining Treatment Paradigm (POLST). Available at: http://www.polst.org/programs-inyour-state/. Accessed March 29, 2014. 21. Cimino JE. A clinicians understanding of ethics in palliative care: an American perspective. Crit Rev Oncol Hematol 2003;46:17-24. 22. Lo B. Resolving ethical dilemmas: a guide for clinicians. Ed 2. Philadelphia, PA: Lippincott Williams and Wilkes; 2005: pp. 117-124.
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23. McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients: the appropriate use of nutrition and hydration. JAMA 1994;272:1263-1266. 24. Ganzini L, Goy ER, Miller LL, et al. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med 2003;349:359-365. 25. Kinlaw K. Ethical issues in palliative care. Semin Oncol Nurs 2005;21:63-68. 26. International council of Nurses. The ICN code of ethics for nurses. Available at: www.icn.ch. Accessed March 31, 2014. 27. American Nurses Association. Code for nurses with interpretive statements. Washington, DC: American Nurses Association; 2001. Available at: http://www.nursingworld.org/codeofethics. Accessed September 23, 2014. 28. Moral dilemmas and ethics inquiry. In: Benjamin M, Curtis J, eds. Ethics in nursing. Ed 4. New York, NY: Oxford University Press; 2010: pp. 3-26. 29. Moreno JD. Deciding together: bioethics and moral consensus. New York, NY: Oxford University Press; 1995: pp. 93-94. 30. Post LF, Blustein J, Dubler NN. Handbook for health care ethics committees. Baltimore, MD: Johns Hopkins University Press; 2007: pp. 11-22. 31. Joint Commission on Accreditation of Healthcare Organizations. Available at: http://www.jointcommission.orgstandards_ information/standards.aspx. Accessed September 23, 2014. 32. Aulisio MP. Meeting the need: ethics consultation in health care today. In: Aulisio MP, Arnold RM, Younger SJ, eds. Ethics consultation: from theory to practice. Baltimore, MD: Johns Hopkins University Press; 2003: pp. 3-22. 33. The Report of the American Society for Bioethics and Humanities. Core competencies for healthcare ethics consultation. Ed 2. Glenview, IL: American Society for Bioethics and Humanities; 2011. 34. Lederberg MS. Making a situational diagnosis. Psychosomatics 1997;38:327-338.
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ETHICAL AND LEGAL ISSUES IN PALLIATIVE CARE MARY S. MCCABE AND NESSA COYLE OBJECTIVES: To provide foundational knowledge about approaches to ethical decision-making that arise as part of palliative care of cancer patients and their families. DATA SOURCE: Journal articles, research reports, state and federal regulations, professional codes of ethics and state of the science papers.
CONCLUSION: More and more, cancer deaths occur after a long progressive illness, requiring ongoing goals of care discussion and a focus on joint decision-making. No matter how diverse the community or how advanced the healthcare setting, the needs, preferences, and values of the patient and family will continue to be at the core of palliative care.
IMPLICATIONS
FOR NURSING PRACTICE: The increasingly complex healthcare environment makes it essential that nurses have an understanding of medical ethics and relevant federal and state laws so that this knowledge can be applied to the many issues arising in palliative and end-of-life care.
KEY WORDS: Palliative care, bioethics, end-of-life conflict, nursing codes of ethics
A
basic knowledge of ethics, relevant federal and state law, and how these intersect with palliative care and end-of-life care provides a necessary framework for oncology nurses working in an increasingly Mary S. McCabe, RN, MA: Director, Survivorship Program, Chair, Ethics Committee, Memorial Sloan Kettering Cancer Center, New York, NY. Nessa Coyle, ACHPN, PhD, FAAN: Consultant in Palliative Care and Bioethics, Memorial Sloan Kettering Cancer Center, New York, NY. Address correspondence to Mary S. McCabe, RN, MA, Memorial Sloan Kettering Cancer Center, 1275 York Ave., Room 2101J, New York, NY 10065. e-mail: [email protected] Ó 2014 Elsevier Inc. All rights reserved. 0749-2081/3004-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2014.08.011
complex healthcare environment. The National Consensus Project for Quality Palliative Care emphasizes this aspect of care in Domain 8: Ethical and Legal Aspects of Care, where it states in Guideline 8.1 ‘‘The patient or surrogate’s goals, preferences, and choices are respected within the limits of applicable state and federal law and within current accepted standards of medical care and professional standards of practice. These goals, preferences, and choices form the basis for the plan of care.’’1 In the United States, as well as other technologically advanced countries, the majority of cancer deaths occur after a long and progressively debilitating illness. Co-morbidities are common and symptoms with suffering tend to be cumulative. Sudden deaths, although they do occur, are much less frequent. The combination of advances
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in science and medical technology, concerns about paternalism, emphasis on patient autonomy, and reluctance to offer a clinical judgment in guiding the decisions of patients and their families have complicated the picture. Healthcare providers have the means to prolong life, but also the means to prolong the dying process. This double-edge sword has led to both benefits and challenges for society and an implicit responsibility to provide care that is clinically and ethically appropriate.2 Clinical judgment and effective communication are essential ingredients in the ethics of care. Illness with a long trajectory provides both the opportunity and the obligation for nurses and other healthcare professionals to have ongoing conversations with patients and their families about their desire for present and future healthcare interventions that align with their values, beliefs, and goals. Presenting the patient and or family with the opportunity to have these conversations (for example, at key points in a disease trajectory, such as at time of initial diagnosis or when the disease has progressed and goals of care need to be revisited) is an ethical obligation. The need to have these conversations becomes even more urgent when the patient presents with advanced disease.2-4
CASE
An 88-year-old orthodox Jewish man presents with recently diagnosed thyroid cancer and extensive pulmonary metastases. He is not a candidate for chemotherapy or surgery, but radiation therapy is being considered for palliation. The patient, who is alert but confused, is admitted to the hospital for dyspnea. He has a devoted, extended family that communicates well with each other. His wife is deceased and his two daughters are his healthcare agents. They both defer, however, to one of the patient’s sons-in-law (who is a Rabbi) for decisions about care. An ethics consult is called by the primary care team for assistance in addressing the patient’s code status, as well as to answer the family’s questions about the institutions policy regarding Jewish Law around end-of-life care. After meeting with the clinical team, the ethics consultant speaks with the daughters and one son-in-
law and then meets with the son-in-law who is the Rabbi. A very extensive discussion is held regarding what needs to be done to fulfill Jewish law and how this could be done without causing the patient any additional suffering. From the Rabbi’s perspective, DNR may be appropriate, but nutrition, hydration, and oxygen need to be provided to the patient. The consultant discusses what can be done to fulfill the spirit of these requirements. It is explained that the patient is at risk for aspiration pneumonia and that oral feeding may no longer be safe. The risks associated with tube feedings are also explained. The Rabbi does not question this clinical judgment and agrees that the nutrition and hydration requirements can be fulfilled with intravenous fluids, if needed. The question of intubation without cardiac resuscitation is raised. It is explained that intubation is uncomfortable and that the patient would in all likelihood need to be sedated afterwards. The Rabbi states that he does not want his father-in-law to suffer and that the patient himself had expressed that wish. After extensive discussion, he states that if the patient stops breathing or his heart stops, ‘‘it will be God’s wish and the clinical staff should not interfere.’’ The family is in agreement. The patient’s condition deteriorates over the next few days and he dies peacefully with his family at the bedside. Comment – respect for the family, their values, and traditions, identifying the decision-maker, and accommodations on both sides facilitated this man’s peaceful death.
CONTEXT AND CULTURE MAKE A DIFFERENCE Although the tenets of bioethics–doing good, avoiding harm, respecting people and their communities, and justice–are of concern to every culture and society, how they are conceptualized is grounded in the moral traditions and philosophy of a particular society and culture, as reflected in the above case. For example, many cultures do not share the primacy of the value of individualism and individual autonomy.5,6 The family as a whole, rather than the individual, or a religious leader, as
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illustrated above, may make the important healthcare decisions. In addition, truth telling in the setting of advanced disease may be seen as doing harm rather than doing good. The norms of a society evolve and change, however, and multiple subcultures may be present in one society and indeed within one family. In some cultures, societies, and religions, moral distinctions differ from the dominant culture. The following examples illustrate end-of-life situations viewed through the lens of ‘‘Western’’ bioethics, where no moral distinctions are made: 1) Withholding versus withdrawing treatment is not morally distinct. A justification for not starting a treatment is also sufficient for stopping it. 2) Artificial nutrition and hydration and other life-sustaining technology such as a ventilator are medical treatments, and as such can be withheld or withdrawn. 3) The right to refuse treatment is not dependent on the type of treatment. A person with capacity has the right to refuse any or all treatment.6 In addition, The Principle of Double Effect (ie, intended versus unintended but foreseeable consequences of an action) is relevant to both bioethics and palliative care. For example, a symptomatic patient at end-of-life may require increasing doses of analgesics to control pain. Although escalating opioid doses in response to the level of pain or dyspnea does not hasten death in most patients, it may do so in a specific case. To evoke the principle of Double Effect, the act must be morally good or neutral (eg, controlling pain or dyspnea) the good effect is intended (relieving suffering); the bad effect is merely foreseen as a potential (hastening death); the bad effect is not the means to the good effect (intent to kill the patient to relieve the suffering); and proportionality (the good trying to achieve outweighs the bad that might happen) – this may vary based on goals of care.6,7 Ethical issues at end-of-life are emotionally loaded and when cultural or spiritual values are in opposition to the dominant cultural norms, ethical conflicts may arise. Because of these as well as other factors, there is a natural interface between ethics and palliative care.2,8
ETHICS AT THE BEDSIDE Although the patient and family is the unit of care in palliative care and end-of-life care, the healthcare provider’s primary obligation is to the patient. This obligation to the patient comes into
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play in the following situations: the patient and family disagree on the goals of care; the family and patient disagree on code status; the family attempts to override the patient’s advance directives; the family attempts to interfere with symptom management, especially around the use of opioids; the family does not want the patient to know their diagnosis (‘‘don’t tell mama’’); or the family’s voice drowns out that of the patient, who’s voice is lost.9-11 The importance of nurses’ moral sensitivity and advocacy in recognizing and addressing these issues is clear.12,13
CASE
The patient is a 76-year-old man who was diagnosed at a community hospital with neuroendocrine cancer with metastases to the liver. He began chemotherapy at the facility, but this was stopped because of urinary retention, severe gout, and dehydration. His functional status quickly declined and he became severely debilitated. The patient and his family sought a second opinion at a comprehensive cancer center regarding his treatment options. Before the scheduled visit the patient’s daughter called to request that the staff not engage the patient in any discussions regarding his diagnosis, treatment options, and prognosis, and that all discussion and disclosure of information be directed to her and other members of the family. An ethics consultation was requested by the team to discuss how best to deal with this situation. The ethics consultant explained that in the matter of truth-telling the clinician’s responsibility is primarily to the patient and secondarily to the family, although cultural issues may be relevant. The consultant recommended that the physician and office practice nurse first meet with the patient alone to determine his true wishes regarding disclosure of his healthcare information and then discuss his preferences with him, his daughter, and other family members together during an office visit. This approach allowed the patient to express his preference for full disclosure but with the desire to have his daughter included in important messages and decisions. During the clinic visit, with his daughter present,
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the patient clearly stated that he wanted full disclosure on all issues. The attending physician was thus able to discuss the incurable nature of the patient’s disease, goals of care, and specific aspects of staging and sites of metastases. The discussion was meaningful and the patient’s daughter had no further objections once the patient clearly stated his wishes with his family present.
Comment – Respect for autonomy gives the patient the right to receive full disclosure about their medical condition but also the right not to be told this information but to have it directed to another person. A recent ethnographic study explored the context in which ethically difficult situations arise. Nurses reported challenges such as ‘‘administering treatments that cause suffering, being honest without removing hope, and considering the risks of speaking up.’’10 In addition, they described nine types of ethically difficult situations: end-of-life situations with futility as a major concern; end-of-life situations with patient autonomy as a primary issue; fidelity to RN obligations but medical team not listening; end-of-life situation with honesty about prognosis a concern; patient capacity to provide informed consent for clinical trial; pain management when drug-seeking behavior is suspected; adolescent patients with cancer above age 18 years but parents continue to make all decisions; mental health capacity to comply with complex treatments; justice issues with insurance company refusal to cover treatment.10,11
THE HISTORICAL INFLUENCE ON PALLIATIVE CARE PRACTICE Although moral principles should guide the professional behavior and decision-making of all healthcare providers, history has shown that it is, unfortunately, necessary to set out ethical standards in the law to require their consistent applica-
tion by all.14 One of the most important examples for why the coupling of ethics and law has been necessary can be traced back to the Nuremberg trials of Nazi physicians and researchers who had subjected concentration camp prisoners to cruel experiments without their consent and knowledge. The conclusions of this Military Tribunal, which became known as the Nuremberg Code, set forth 10 ethical principles regarding human experimentation and established the moral standard that the ‘‘voluntary consent of the human subject is absolutely essential.’’15 More than any previous ethical code for the conduct of research, it was remarkably specific in requiring free choice. Building on this precept of respect for persons, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research issued The Belmont Report in 1979. This code set out three principles, or prescriptive judgments, that are relevant to both clinical research and clinical care in our Western cultural tradition: respect for persons, beneficence and justice.16 These principles continue to be applied today to the identification and assessment of ethical issues in palliative care, as highlighted in the cases included in this article. Then through the courts, two important cases highlighted the fact that there are limits to physician authority and expanded the concept of surrogate decision-making and the right to refuse treatment. In 1976, the New Jersey Supreme Court in the case of Karen Ann Quinlan gave the patient’s father the right, as the surrogate decision-maker, to choose a physician who would support his desire to remove the ventilator, thus allowing for the withdrawal of ventilator support in a permanently unconscious patient.17 In 1990, in the Nancy Cruzan case, the US Supreme Court decision allowed for the discontinuation of artificial nutrition and hydration (both were categorized as medical treatment), also in a permanently unconscious, young woman.18 Both cases set out the palliative care concepts we use today; respect for the patient’s right to refuse treatment and acknowledgment of the rights of surrogates to make decisions for patients when they no longer have capacity to make medical decisions for themselves.
THE LAW AND THE ETHICS OF HEALTHCARE PLANNING In recent years, the historical precedence established for the ‘‘respect for persons’’ concept
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continues with considerable focus on the rights of patients as ‘‘autonomous agents’’ to make their own healthcare decisions. Alongside this movement has been a parallel effort to assure that the rights of patients are protected even when they no longer have the capacity to make healthcare decisions. Both federal and state laws have continued to focus on protecting these rights. The Patient Self Care Determination Act, passed by Congress in 1990, requires that hospitals and other healthcare institutions provide information about advance healthcare directives to adult patients upon their admission to the healthcare facility.19 The intent of the law is to ensure that patients can make their own healthcare decisions, accept or refuse treatment, and communicate their preferences for future care should they become incapacitated through an advance directive. More recently, states passed legislation supporting the use of advance directives called either Medical Orders for Life Sustaining Treatment (MOLST) or Physician Orders for Life Sustaining Treatment (POLST).20 Each of these documents is a tool to communicate the preferences developed by a patient in conjunction with the healthcare team. All but seven states and the District of Columbia currently have or are developing such laws.20
Resuscitation Decisions Cardiopulmonary resuscitation (CPR) was initially developed for acute illnesses, such as myocardial infarctions, but CPR has now become a standard intervention (regardless of diagnosis) unless there are specific orders to the contrary. The lack of a DNR order for a terminally ill patient leads to ethical conflicts for the healthcare team because CPR is almost never successful in these individuals.22 Understanding the reasons for the reluctance to permit a DNR order is essential. There can be religious or cultural reasons that patients and their families request resuscitation, but there also may be misunderstandings about what such a procedure entails and whether the DNR restricts other care of the patient. For some patients and families, they are not making the decision, but rather it is being made by a religious figure who guides the decision-making, thus making it critically important to engage this key figure in the discussion. Patients and families may also fear that DNR translates into ‘‘Provide No Care’’ and once the DNR is in place, the patient will no longer be turned or bathed and all other interventions will be stopped, including supportive care.21,22 Through compassionate and sensitive communication, these concerns can be addressed and decisions made that are in keeping with the values of the patient.
ETHICAL ISSUES AT THE END-OF-LIFE
Fluids and Nutrition Withholding fluids and nutrition at the end-oflife is an especially sensitive issue because food and hydration are such essential human needs and are central to the social interactions in many cultures. Family members, in particular, may become distressed when their request for tube feedings are denied in the dying patient, and they may become angry when counseled to not give food or liquids orally to a dying patient at risk of aspiration. In the first case, the family may wrongly think that the nutrition being denied will prolong survival; in the second case, the family may feel they are being forbidden to perform the one remaining act of caregiving that they can still provide to their loved one.23,24 In both cases, a sensitive approach to education and counseling is important. Both medical and nursing associations, along with palliative care organizations, support the withholding of artificial nutrition and hydration at the end-of-life, except in select patients. However, the application of these statements requires that the nurse is knowledgeable
Increasingly, as patients and families are involved in healthcare decisions, value conflicts arise when there are differences in the desired plan of care. Although these differences are most often attributed to conflicts between clinicians and patients, they may also exist between healthcare providers and healthcare teams. Regardless of the parties involved, the issues causing the conflict are characterized by: attempting to discern and make the ‘‘right’’ decision that benefits the patient, and creating a supporting framework about what makes a particular decision or a particular action the ‘‘right’’ choice.21 The areas for dispute are extensive, such as brain death determination by neurologic criteria, terminal sedation, voluntary stopping eating and drinking at the end-of-life, artificial nutrition and hydration, resuscitation orders, euthanasia, and physician-assisted suicide. Each of these topics deserves attention and extensive discussion, but two that are particularly relevant to nursing practice are highlighted.
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about the risks and benefits of such requested interventions and can explain their being withheld in terms of promoting the good of the patient.25
CREATING AN ETHICAL PRACTICE FRAMEWORK Ethical care is an obligation of each individual nurse, and, in support of this responsibility, nursing codes of ethics form a framework that unite individual nurses into a caregiving community with ideals of professional conduct. The International Council of Nurses (ICN) has put forth their code, which states in its preamble: ‘‘Nurses have four fundamental responsibilities: to promote health, to prevent illness, to restore health, and to alleviate suffering. The need for nursing is universal.’’ To properly carry out these responsibilities, there are four ethical standards of conduct in the ICN code and they relate to: people requiring care, clinical practice, professionalism, and co-workers.26 In addition, the American Nurses Association has a code of ethics and the tenets of this code consist of nine statements, which describe the commitment of nurses to patients, duty to self and others, and duties beyond individual patient encounters.27 These codes of nursing ethics have two principal functions as put forth by Benjamin and Curtis.28 First, they set out an enforceable standard of minimal conduct that allows the profession to discipline those who fall below this minimum standard; and second, they serve as a guide for individuals in deciding on actions in particular situations.28 These codes are not merely a set of rules, but rather they are a reminder to nurses of the special responsibilities we have in caring for the sick and highlight the responsibility we have to use our knowledge and skills to help individuals and families when they are at their most vulnerable. Most importantly, the professional ideals expressed in these codes must be supported and actualized to be of value. Such actualization can occur in a number of ways, at the individual level, at the unit work level, at the site of healthcare delivery, and at the institutional level. At all levels, actualization requires ethical analysis and reasoning specific to the situation at hand. One important way in which these values can be actualized is through the function of institutional ethics committees. Such committees are very common in the US and throughout the world, and the need for them reflects the complexity of healthcare today, in particular oncology care. These committees were first organized in the mid 20th century as
institutional efforts to bring a formal ethical perspective to clinical issues. However, they fell short of this goal and were described as ‘‘a politically attractive way for moral controversies to be procedurally accommodated.’’29 They were usually small groups focused on particular issues, such as making decisions about involuntary sterilization, abortion committees that evaluated requests from women who wished to terminate their pregnancies, and the selection of individuals who would receive hemodialysis among candidates with end-stage renal disease.30 Fortunately, over time, clinicians, clergy, and administrators came to see the value for interdisciplinary deliberations about issues related to the rapid explosion of high-tech care, especially its use at the end of life. In fact, in 1976, the Supreme Court of New Jersey recommended in its decision in the Karen Ann Quinlan case that hospitals have an ethics committee to deal with termination of life-sustaining treatments.17 The broader intent of this recommendation, which evolved over time, was to have a group to resolve healthcare conflicts with ethical dimensions within the healthcare system rather than resolving them in the courts. More recently, the Joint Commission on Accreditation of Healthcare Organizations has required since 1992 that each healthcare institution have a standing mechanism to address ethical issues and resolve disputes.31 Thus, in the beginning, ethics committees focused primarily on ethical conflicts related to goals of care. Over time, the activities of ethics committees have expanded to include three defined functions: consultation, education, and policy development/review, which then provide a broad opportunity to assure that the institution develops and encourages a culture of moral agency with ethical obligations that guide practice. To be effective in these two clinical domains of consultation and education, it is critically important that nurses know about and be active members of ethics committees. Because so much of oncology care is provided by multidisciplinary teams, it is not only natural but necessary for nurses to be part of the committee function and to be confident in calling on the ethics committee to assist in clinical situations when ethical issues arise. However, such confidence and expertise does not arise overnight, it requires the identification and commitment of nursing leadership to encourage and even request committee participation, if need be, and to support nurses who speak up about clinical situations where there is ethical conflict.
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ETHICS CONSULTATION Hospitals have increasingly incorporated consultation into the role of ethics committees and, by 2002, 81% of all US hospitals had an ethics consultation service of some kind.32 As one might expect, the majority of these consults deal with conflict, most often at the end of life. But what is driving this need for ethics consults? For one thing, the healthcare system has become incredibly complex and our approach with patients is to engage them in joint decision-making and have them more actively involved in their care. More than ever before, patients and families face choices that are difficult to understand and they are asked to make decisions they often feel unprepared to make. In addition, the coordination of care among providers is often lacking because each specialist is focused on a limited set of medical problems and communication with the primary care provider may be quite limited. Patients also have less wellestablished relationships with their physicians and these physicians have less time to spend with their patients at a time when clear, understandable communication is essential. But communication and coordination problems are not the sole and inevitable causes of ethics consults. There can also be real disagreements about what constitutes medically beneficial care, especially as our country becomes increasingly diverse. An ‘‘ethics facilitation’’ approach as described in Core Competencies for Health Care Ethics Consultation: The Report of the American Society of Bioethics and Humanities offers a balanced approach to decision-making when disagreements arise, as they will, and sets out a template for a respectful dialogue among the parties involved.33
ETHICS EDUCATION One of the most important opportunities for nurses to reduce moral distress associated with patient care is to develop a practice environment of ethical inquiry so that problematic issues can be identified, addressed, and resolved (Table 1).34 Certainly, such an effort requires a positive ethical climate at the organizational level, but it can truly be supported and enhanced by nurses themselves. A number of nursing-led forums can be practically and effectively instituted. For example, nurses on a particular unit or practice site can take the lead in setting up multidisciplinary debriefings after a
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TABLE 1.
Components of an Ethical Inquiry in Complex Clinical Situations Patient/family issues Socially and psychologically what issues are driving the situation? Whom do they involve? Staff issues Is there disagreement about medical management? Is some other interstaff conflict being played out? Joint issues What is the relationship between the staff and the patient and family? What is the understanding of goals of care by different participants? Ethical issues Is there an ethical dilemma? A true conflict of values that cannot be reduced to any other problem or misunderstanding? Are there cultural or religious issues at play here? Legal issues Are there laws or regulations, federal, or state that impact the case? Could any of these create a potential clinical/ethical conflict? What is the nature of that conflict? (Adapted and reprinted with permissions from Lederberg.34)
particularly difficult case. It can be more than peer support with particular focus on the ethical issues at play, how they were addressed (or not), and what would work better in the future. For example, a debriefing centered on a case where the family was requesting that the patient not receive pain medication at the end of life, despite the assessment by the nurses that the patient was in significant pain, could focus on the professional obligation to relieve suffering, as well as the legal and clinical issues of the case. In addition, an ethics curriculum can be developed by an interested group that can be instituted as part of an already existing inservice program, nursing grand rounds, or unit-based training. Such a curriculum could be simple and include such topics as: truth telling, surrogate decision-making, and medical futility. It takes the interest, commitment, and enthusiasm of one nurse to begin.
THE PARTNERSHIP OF PALLIATIVE CARE AND THE ETHICS COMMITTEE Increasingly, palliative care services are becoming incorporated into institutions and practices, thus becoming a standard in the care of patients along the care continuum. As this occurs,
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the palliative care specialists and generalists interact with the ethics committee in such a way as to mitigate the need for consults and to serve as expert advisors in the development and dissemination of ethics education programs. The National Consensus Project for Quality Palliative Care has defined palliative care: ‘‘Provides comprehensive management of physical, psychosocial, spiritual and existential needs of patients (and families) that are facing a life limiting illness.’’1 In distinction, the American Society of Bioethics and Humanities Task Force on the Core Competencies for Ethics Consultation has defined Ethics Consultation as: ‘‘A service provided by an individual or a group to help patients, families, surrogates, healthcare providers or other involved parties address uncertainty or conflict regarding value-laden issues that emerge in healthcare.’’33 As one can see, the roles of each group are separate and distinct, but certainly complementary. One serves as a limited consult service and the other as a service providing ongoing care. Each is better because of the other in serving patients, families, and clinical staff. In oncology, many ethically complex issues at end of life fall under the rubric of both palliative care and bioethics, and both services may be involved in a particular case. Often, an ethics consultation may result in a suggested palliative care referral, and if palliative care is already involved in a complex situation they may recommend an ethics consultation to help untangle the situation. In a review of an ethics consultation database from two academic institutions that related to adult patients with
cancer, 41% of the patients had a palliative care consultation as well as an ethics consultation.8
CONCLUSION New medical issues in oncology are increasing and, as a result, there will continue to be ethical challenges in clinical care. The virtual explosion of technology and advances in molecular biology now permit such things as genetically driven treatment plans for many cancers and are rapidly expanding our knowledge of individual and family cancer susceptibility through genome and exome analyses, often outpacing our ability to act on this information. The ability of computers to analyze mass amounts of patient data is also driving the growing focus on learning healthcare systems, which is blurring the distinctions between research and clinical care. At the same time our country is becoming more and more diverse, thus requiring greater sensitivity to religious and cultural issues around clinical decision-making and end-of-life care. Yet, at the center of all this change and scientific advancement is the patient. No matter how sophisticated the technology, how advanced the healthcare delivery system, or how diverse our community, respect for the needs, values, and preferences of the patient and family will continue to be at the core of palliative care. Our ethical responsibility as nurses will continue to be the obligation to establish the trust of our patients and families and apply the principle of beneficence in reducing their suffering, especially at the end of life.
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6. Beauchamp TL, Childress JF. Principles of biomedical ethics. Ed 6. New York: Oxford University Press; 2008. 7. Schwarz JK, Tarzian AJ. Ethical aspects of palliative care. In: Matzo M, Witt-Sherman D, eds. Palliative care nursing: quality care to the end-of-life. New York, NY: Springer; 2010: pp. 119-141. 8. Shuman AG, Montas SM, Barnosky AR, Smith LB, Fins JJ, McCabe MS. Clinical ethics consultation in oncology. J Oncol Pract 2013;9:240-245. 9. Gaudine A, Lefort SM, Lamb M, Thorne L. Ethical conflicts with hospitals: the perspective of nurses and physicians. Nurs Ethics 2011;18:756-766. 10. Pavlish C, Brown-Salzman K, Jakel P, Rounkle AM. Nurses’ responses to ethical challenges in oncology: an ethnographic study. Clin J Oncol Nurs 2012;16:592-600. 11. Pavlish C, Brown-Salzman K, Jakel P, Fine A. The nature of ethical conflicts and the meaning of moral community in oncology practice. Oncol Nurs Forum 2014;1:130-140.
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12. Schluter J, Winch S, Holzhauser K, Henderson A. Nurses’ moral sensitivity and hospital ethical climate: a literature review. Nurs Ethics 2008;15:304-321. 13. Schlairet MC. Bioethics mediation: the role and importance of nursing advocacy. Nurs Outlook 2008;57:185-193. 14. Faden RR, Beauchamp TL. A history and theory of informed consent. New York, NY: Oxford University Press; 1986: pp. 151-237. 15. United Sates v Karl Brandt. Trials of war criminals before the Nuremberg military tribunals under control council, Law No.10, Vols. 1 and 2, ‘‘The Medical Case’’ (Military Tribunal 1). Washington, DC: US Government Printing Office; 1947: pp. 1948-1949. 16. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont report: ethical principles and guidelines for the protection of human subjects of research. Washington, DC: Government Printing Office; 1979. 17. In re: Quinlan, 137 N.J Super. 227, 348 A. 2d 801 Ch. Div., 1975. 18. Cruzan vs Director, Missouri Dept. of Health, 110 S. Ct. 2841, 1990. 19. Patient Self Determination Act, Omnibus Budget Reconciliation Act of 1990, Pub L No. 101-508, sec.4206 and 4751, 105 Stat.1388, 1388-115, and 1388-204. 20. Physicians Orders for Life Sustaining Treatment Paradigm (POLST). Available at: http://www.polst.org/programs-inyour-state/. Accessed March 29, 2014. 21. Cimino JE. A clinicians understanding of ethics in palliative care: an American perspective. Crit Rev Oncol Hematol 2003;46:17-24. 22. Lo B. Resolving ethical dilemmas: a guide for clinicians. Ed 2. Philadelphia, PA: Lippincott Williams and Wilkes; 2005: pp. 117-124.
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23. McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients: the appropriate use of nutrition and hydration. JAMA 1994;272:1263-1266. 24. Ganzini L, Goy ER, Miller LL, et al. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med 2003;349:359-365. 25. Kinlaw K. Ethical issues in palliative care. Semin Oncol Nurs 2005;21:63-68. 26. International council of Nurses. The ICN code of ethics for nurses. Available at: www.icn.ch. Accessed March 31, 2014. 27. American Nurses Association. Code for nurses with interpretive statements. Washington, DC: American Nurses Association; 2001. Available at: http://www.nursingworld.org/codeofethics. Accessed September 23, 2014. 28. Moral dilemmas and ethics inquiry. In: Benjamin M, Curtis J, eds. Ethics in nursing. Ed 4. New York, NY: Oxford University Press; 2010: pp. 3-26. 29. Moreno JD. Deciding together: bioethics and moral consensus. New York, NY: Oxford University Press; 1995: pp. 93-94. 30. Post LF, Blustein J, Dubler NN. Handbook for health care ethics committees. Baltimore, MD: Johns Hopkins University Press; 2007: pp. 11-22. 31. Joint Commission on Accreditation of Healthcare Organizations. Available at: http://www.jointcommission.orgstandards_ information/standards.aspx. Accessed September 23, 2014. 32. Aulisio MP. Meeting the need: ethics consultation in health care today. In: Aulisio MP, Arnold RM, Younger SJ, eds. Ethics consultation: from theory to practice. Baltimore, MD: Johns Hopkins University Press; 2003: pp. 3-22. 33. The Report of the American Society for Bioethics and Humanities. Core competencies for healthcare ethics consultation. Ed 2. Glenview, IL: American Society for Bioethics and Humanities; 2011. 34. Lederberg MS. Making a situational diagnosis. Psychosomatics 1997;38:327-338.
