Legal and ethical issues in end-of-life care

Crit Care Nurs Clin N Am 14 (2002) 141 – 155

Legal and ethical issues in end-of-life care$ Ferne C. Kyba, RN, PhD School of Nursing, University of Texas at Arlington, Box 19407, Arlington, TX 76019-0407, USA

Challenges for a ‘‘death with dignity’’ in America Introduction The American experience with death changed dramatically during the 20th century. In the early 1900s, dying was a natural and familiar event. With advances in public health and medicine, the power to control disease and manage injury took hold of our lives and of our deaths, moving the locale from home to institution. Now death is ‘‘medicalized’’ as advances in science and technology allow prolonging life, but also the frightening reality of prolonging dying [1 – 3]. Tilden notes that death is often ‘‘negotiated,’’ following ‘‘a long period of aggressive treatments, burdensome to patients, exhausting and expensive to the family, demoralizing to clinicians, and difficult to justify for society’s resources’’ [4]. Terminally ill patients, families, and professional caregivers confront the tension within the care versus cure paradigm. Nowhere is that tension higher than in critical care settings. Americans have come to view death as the enemy and to expect too much of ‘‘cure,’’ but are awakening to the need for change in our cultural expectations of death. Additionally, the drive to legalize assisted suicide has served as a wake-up call to health care professionals. This article discusses factors challenging a ‘‘good death’’ in America; then it outlines selected legal and ethical issues related to dying persons’ care. Next it

examines key dilemmas faced in end-of-life (EOL) care: patients’ decision-making capacity and right to refuse treatment; withholding and withdrawing lifesustaining treatment, including nutrition and hydration; managing pain; resuscitation decisions; medical futility; and assisted suicide. Implications for critical care practice, education, research, and public policy are identified. Sociocultural context The growing demand to improve the quality of EOL care is fueled by a variety of sociocultural factors. America’s population is aging, with its fastest growing demographic cohort those persons over age 85 [5]. Currently, in many adult critical care units (CCUs), the patient majority is senior. In addition to graying, America is becoming multi-hued through expanding ethnic and cultural diversity, providing the potential for clashing values in sensitive health care encounters. Disease prevalence is shifting from acute to chronic illnesses such as cancer; cardiovascular, respiratory, and neurological conditions. Escalating care needs may further burden our health care system, currently challenged by issues of access, cost and quality, where regulators and third-party payers demand value and accountability [6,7], including documentation that is increasingly burdensome [8]. An additional deterrent to managing EOL pain and suffering is reticence and confusion about use of adequate pain medication, based on fear of drug abuse [6,9].

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Financial Disclosure: The author has no relationship with a commercial company with a financial interest in this subject matter. This article was developed without support from a research grant, other contract, or consultancy. There are no conflicts of interest known to the author. E-mail address: [email protected] (F.C. Kyba).

Technologic imperative With ready access to sophisticated technology, its use often seems imperative, with limited consideration of overall medical goals and patients’ quality of

0899-5885/02/$ – see front matter D 2002, Elsevier Science (USA). All rights reserved. PII: S 0 8 9 9 - 5 8 8 5 ( 0 1 ) 0 0 0 0 4 - 1

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life [1]. Americans fear spending their final hours tethered to cold impersonal machines, rather than in the loving arms of family and friends. In collective dismay, health care consumers are reacting to physicians’ and other health care workers altruistic yet paternalistic treatment decisions [3,10,11]. The question raised is: ‘‘Just because we have the technology, must we always use it?’’ Once it is implemented, a vicious cycle of commitment begins and clinicians face negotiating its strategic withdrawal [2]. Outcry for alternatives and change Stimulated by public discourse, court scrutiny, and institutional review committees, a body of case law and ethical analysis has developed to guide EOL care and to support dying persons’ decision making with families, surrogates, and professional caregivers. From this growing volume of EOL literature, two publications focused attention and galvanized action [12,13]. Findings from the 1995 Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) [14] were clear. Too frequently aggressive treatment merely prolongs dying and does not contribute to a good death. This four year, comprehensive study of EOL care for over 9,000 hospitalized terminally ill patients proceeded in two phases: first, examining baseline data on hospital deaths; and secondly, using nurse facilitators to provide physicians information about prognoses and patient preferences. Its findings were distressing: patients’ wishes regarding cardiopulmonary resuscitation (CPR) frequently were ignored or unknown; physicians had inaccurate perceptions of patients’ treatment preferences; many died prolonged, poorly managed, painful deaths; and the study interventions to improve communication and lower barriers to appropriate terminal care were ineffective. The 1997 Institute of Medicine (IOM) study, Approaching Death: Improving Care at the End-ofLife [15], identified the urgent need for individual and system change and stressed that persons with advanced, incurable disease should expect compassionate, humane care. It linked inadequacy in care to legal, economic, and organizational problems; and faulted academic medicine for failing to provide adequate EOL education, particularly knowledge of the experience of dying and symptom relief. Barriers to palliative care Expert care is critical to meet physiological needs; however; dying persons’ spiritual, emotional, and

psychosocial needs may eclipse those concerns for a ‘‘good death’’ [16]. As Nuland [17] points out: We bear more than pain and sorrow when we depart life. Among the heaviest burdens is apt to be regret. . . . [T]here are additional pieces of baggage we shall all take to the grave, but from which we may somewhat disencumber ourselves if we anticipate them. . .conflicts unresolved, breached relationships not healed, potential unfulfilled, promises not kept, and years that will never be lived. For virtually every one of us, there will be unfinished business. (p 261) Many health care professionals are ill-prepared by their education to address these holistic needs [6,18]. Systematic reviews of medical [19] and nursing texts [6] found that they contain inaccurate and insufficient information to guide EOL practice. Other barriers to palliative care in acute and critical care settings include difficulty in determining treatment preferences, prognostic uncertainties, fragmented care by multiple subspecialties, and problems in assessing intervention promise or futility [2,8,20]. Dying persons may be treated with invasive medical procedures, despite evidence of very poor prognoses. Focus solely on cure feeds an attitude that ‘‘there’s nothing more I can do for you,’’ leaving patients and families with a sense of abandonment in their time of greatest need. This is where the palliative care philosophy shifts us from intensive care to intensive caring. Hospice and palliative care promote the highest quality of living until the end. Yet, hospice is underused, often because it is construed as abandoning hope. Fewer than 30% of deaths are supported by hospice care [21]. If cure is not possible and life cannot be preserved, caregivers frequently experience a sense of failure. Many physicians are reluctant to make a palliative care referral, perhaps from a concern for losing control of the patient’s care. Some patients and their families may be too ill informed or disempowered to access appropriate palliative care through their own initiative. Despite a growing awareness that palliative care must transcend care settings for a seamless transition, the majority of American EOL care is compartmentalized, rather than evolving with the trajectory of persons’ dying [16]. Regulatory and reimbursement issues also pose barriers to care [16]. Hospice eligibility under Medicare is tied to a physician certifying a prognosis projection of six months or less, a legacy from the perspective of cancer trajectories. Such a definition excludes many with chronic dementia, those in persistent vegetative states, end-stage auto-immune defi-

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ciency syndrome, and many with chronic cardiac, pulmonary, or neurological diseases; thus, their EOL needs are addressed inadequately or belatedly. Hospice patients must agree to forgo life-sustaining treatments, including dialysis, radiation, and chemotherapy, whether or not their goal is comfort, rather than cure [8]. Although most private insurance policies and over 80% of managed care plans provide a hospice benefit; the majority do not cover non-hospice palliative care [16]. Influencing the national scene: professional associations and community foundations Professional organizations have responded by publishing policy and position statements to guide EOL practice [22 – 29]. Pain management is receiving great attention from a variety of public and private organizations. The Joint Commission on Accreditation of Healthcare Organizations and the Veterans’ Administration (America’s largest integrated health care system) have mandated assessment of pain as the fifth vital sign. The American Association of Colleges of Nursing (AACN) and other nursing organizations have endorsed this standard [30]. Several foundations have provided invaluable support [13]. In 1997 the Robert Wood Johnson (RWJ) Foundation funded Last Acts, a national coalition of professional organizations and consumers, and provided grants for Community-State Partnerships to Improve EOL Care. The Soros Foundation’s Project on Death in America supported the Nursing Leadership Consortium to develop an EOL agenda for nursing. National nursing organizations have recognized educational inadequacies in undergraduate, graduate, and continuing education. The American Association of Colleges of Nursing, the National League for Nursing, and the National Council of State Boards of Nursing, supported by the RWJ Foundation, have developed EOL competency statements as basis for curricular changes [30]. Pain management and EOL care questions will be included on the national nursing (NCLEX) licensing exam. Specialty practice organizations such as the American Association of Critical-Care Nurses (AACN) and the Oncology Nursing Society (ONS) have EOL agendas including review of related certification exam content. Through national ‘‘train the trainer’’ models for continuing education, the American Medical Association’s project Educating Physicians on End-of-Life Care (EPEC) [31] and the End of Life Nursing Education Consortium (ELNEC) [6,30], a cadre of expert educators and teaching resources are developing. Formal EOL skill training, not routine for most

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postgraduate medical programs, is changing, too. The Accreditation Council on Graduate Medical Education has revised its internal medicine residency program requiring palliative care education [11].

Legal perspectives in EOL care Consent, competency, and decision making capacity In Western medicine, treatment decision making is grounded in the legal right to self-determination and the ethical principle of autonomy [3,32]. Competent persons have the right to make treatment choices, based on their own values, beliefs, and life goals, even against the recommendations of their families and health care professionals. Several decades of court decisions, including Quinlan and Cruzan, have established the legal framework for EOL decision making. Withholding or withdrawing life-sustaining treatment is legally justified by precepts of informed consent and informed refusal [33]. There are legal concerns for patients’ and surrogates’ mental and emotional capacity to which professionals must be attuned. Depression and its effects, delirium, dementia, and acognitive states all impact patients’ decision-making participation and ability to consent authentically [34 – 36]. Critically ill patients typically lack decision-making capacity. Even where advance directives are available, they often provide limited guidance in current unanticipated situations [8,33]. Empirical evidence indicates that surrogates’ decisions may not accurately reflect patient preferences and physicians often do not know their patients’ wishes for EOL care [3,14,36]. Fear of medical malpractice, often unfounded, is a barrier to EOL care. A bigger threat to clinicians is licensing board disciplinary action for failure to meet the standard of care and clinical practice guidelines [37]. A 1997 consensus panel of the American College of Physicians and the American Society of Internal Medicine [38] identified seven legal myths as barriers to EOL care: (1) forgoing life-sustaining treatment for patients without decision-making capacity requires evidence that this was the patient’s actual wish; (2) withholding or withdrawing of artificial fluids and nutrition from terminally ill or permanently unconscious patients is illegal; (3) risk management personnel must be consulted before life-sustaining medical treatment may be terminated;

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(4) advance directives must comply with specific forms, are not transferable between states, and govern all future treatment decisions; oral advance directives are unenforceable; (5) if a physician prescribes or administers high doses of medication to relieve pain or other discomfort in a terminally ill patient, resulting in death, he/she will be criminally prosecuted; (6) when a terminally ill patient’s suffering is overwhelming despite palliative care, and he/ she requests a hastened death, there are no legally permissible options to ease suffering; (7) the 1997 Supreme Court decisions outlawed physician-assisted suicide [38]. Legal instruments and surrogate decision-making Advance directives (ADs), called ‘‘living wills’’ by the lay public, state persons’ future health care preferences, if they later lack decision-making capacity. ADs also provide the ‘‘clear and convincing evidence’’ required by some court and legislative mandates [39,40]. Legislative and legal action expanded the scope and specificity of ADs into two legal instruments, now recognized in all 50 states [36]. The medical directive provides instruction to physicians and, in some states, to families [40]. The durable power of attorney for health care (medical power of attorney or health care proxy) appoints a health care agent, surrogate, or proxy to act on the patient’s behalf [32,34,36,40]. Practitioners must be aware of variation in state laws, including terms for the ADs, requirements for specific documents, and application within their own jurisdictions. Decision making for incapacitated persons falls to surrogates [4,40]. Legal guidelines direct surrogates to represent the patient’s own values (substituted judgment standard), based on ADs or prior conversations. When the patient’s values are unknown, the best interest standard is applied by balancing the burdens and benefits of the proposed treatment to determine the care promoting the patient’s highest quality of life. However, studies indicate that families’ own values, motives and identification with the patient often shape such decisions [4]. The Patient Self-Determination Act requires institutions receiving Medicare funds to inform patients of their AD rights [13]. Unfortunately, fewer than 30% of Americans have completed ADs. Research indicates that persons who are Hispanic or Spanishspeaking, those with high school education or less, with low income, and the uninsured are less likely to have done so. Many directives are not available when

needed or lack clarity for guiding surrogates’ decisions under life-threatening conditions [3,34,39, 41,42]. These factors highlight the importance of advance care planning discussions with family and surrogates, beyond formal document completion. A more comprehensive review of persons’ preferences for treatment under particular life-threatening situations and for location of terminal care, such as hospital, hospice, or critical care is needed.

Ethical perspectives in EOL care A framework for ethical decision making: codes and principles Core values including advocacy and commitment to service are embodied in our health care professional codes of ethics. While these codes ‘‘provide a moral compass’’ [43] to guide ethical practice they do not offer clear direction in perplexing dilemmas nor rid us of the moral distress occurring from gutwrenching clinical cases. Ethical practice obliges us to engage in a reasoned process, arrive at appropriate clinical decisions and offer moral justification for our decisions [43,44]. In Western medicine, the ethical principles of autonomy, nonmaleficence, beneficence, and justice offer primary moral justification for our professional acts in EOL care [13,45,46,57]. The principles may be applied as rules of veracity (honesty and truthfulness), confidentiality, privacy, and fidelity (faithfulness) [46]. Together, these principles and rules shape health care professionals’ obligations in caring for critically and terminally ill persons. Autonomy, applied as respect for persons, is the foundation for informed consent, advance care planning, and compassionate EOL care [4,13,46]. The best decision making occurs when patients’ and their significant others’ values, beliefs, and desires are known [44]. Failure to involve patients or their surrogates in decision making negates their autonomy. Autonomy is applied too by giving culturally competent care. As the world becomes a global village, we must recognize cultural and ethnic differences. For example, autonomy is more highly valued in the USA and Canada than South America; less in some European countries, such as Italy and Portugal; and with little but growing interest in Asian countries such as Japan, Taiwan, and Korea [47]. Beneficence and nonmaleficence may be viewed on a continuum, ranging from the minimum expectation that health care professionals will do no harm (nonmaleficence) and optimally promote good (bene-

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ficence) [4,13,46]. Associated with assessing benefit and harm (burden) is the concept of proportionality [48]. It requires that ‘‘the risk of causing harm must bear a direct relationship to the danger and immediacy of the patient’s clinical situation and the expected benefit of the intervention’’ [48]. Autonomy and beneficence may conflict, as with paternalism or parentalism [10]. In that case, providers overrule patients’ autonomous treatment refusals and implement care the providers’ views as beneficial. Or both autonomy and beneficence may be violated as in the uncommon but ethically inappropriate practice of allowing fledgling health care professionals to practice technical skills on dying or newly deceased patients [49]. Justice has many facets including equity and fairness in decisions affecting others [4,13,46]. Decisions are judged unfair when some are provided with access to care and finite health care resources while others with similar need are denied it. With care in a CCU bed costing up to $3500 per day and requiring quadruple the resources for a traditional hospital bed [7], there is a challenging distributive justice issue, especially with evidence that life-sustaining interventions are used often without the consent of patient or surrogate [3,7]. Common ethical dilemmas in critical care Treatment refusal and limiting life-sustaining treatment The majority of American critical care deaths result from decisions to forgo life-sustaining treatment [13]. Across the USA, considerable practice variability exists regarding withholding decisions; such as, whether it is the physicians’ or nurses’ role to withdraw mechanical ventilation; slow terminal weaning or rapid extubation [8]. Such judgments often depend on professional, personal, social, and attitudinal perspectives, including physician subspecialty status [12,14]. Withholding treatment is acceptable legally and ethically for the hopelessly ill. There is no ethical difference between withholding and withdrawing treatment, although the latter may be more difficult emotionally [2]. For some patients and their families, withholding or withdrawing treatment is not an acceptable choice because of personal values or religious beliefs. Studies have shown that white patients are more likely to prefer forgoing treatment than are Black or Hispanic patients [35]. Care of dying persons must always be patient-focused, respecting the unique values and decisions of patients and their support system, and being sensitive to psychosocial and physical needs and concerns. Care

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providers must educate and support the family to understand that the objective of palliative care is comfort, not cure. It is important to help patients’ and families’ focus on the goals of care, weighing treatment options by balancing proportionate benefit and disproportionate burden. Although clinical and ethical analyses support non-aggressive treatment in the imminently dying, it is wise to proceed with caution, especially when dealing with surrogate decision makers. An added concern in a managed care environment is that treatment could be withheld from persons who could benefit from it for economic, not humanitarian, motives. Use of subjective, quality-of-life criteria could endanger those who are old, disabled, or needing expensive care. Medically provided nutrition and hydration Decisions about the technologic administration or withdrawal of nutrition and hydration from the terminally ill are among the most ethically troublesome clinicians face. Provision of food is deeply symbolic of nurturing, caring and commitment in our human experience [27,50]. This dilemma centers on whether food and fluids, provided by gastric and enteral tubes or parenteral administration, preserves life or prolongs death. Individual professionals’ positions range across the spectrum from belief that withholding or withdrawing food and fluids is active euthanasia to a perspective that forcing artificial nutrition and hydration will increase the dying persons’ discomfort and only delay the inevitable. Despite the fact that artificial nutrition and hydration is viewed by a majority of the U.S. Supreme Court as medical therapy that may be withheld, it is administered to a significant number of terminally ill patients. Its use in the USA is 4 to 10 times greater than in other Western countries [3]. Clinical experience, validated by research, has demonstrated that imminently dying persons experience loss of appetite and a natural process of dehydration. Organ systems function less efficiently until they fail and the desire to eat and drink is lost [48,50]. Clinical observations of hospice patients’ final stages indicate that most terminally ill persons do not experience hunger and often exhibit isotonic dehydration [51]. Benefits from end-stage dehydration include the release of endogenous opioids and the analgesic effect of ketosis [3]. There is decreased urine output, diminishing incontinence; lessened edema, decreasing the risk of pressure ulcers; and reduced pulmonary and gastric secretions, relieving congestion, coughing, and vomiting [3]. Finally,

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ascites related to tumor effects may subside [51]. With total parenteral nutrition, the adverse effects of fluid overload, local bleeding and infection, and sepsis may be significant and shorten life while diminishing its quality [3]. Oral feedings by mouth, to the extent possible, are a part of comfort care for the imminently dying but, in most cases, the aggressive use of parenteral or feeding tubes is not. Their benefits are outweighed by undue burdens and complications when measured against quality of life [3]. We provide appropriate care, not active euthanasia, as death occurs from the terminal condition. However, this perspective may be easier to address in long-term or home settings than in critical care where persons’ clinical outcomes may be uncertain and ambiguous [20]. An integrative review of all research studies from 1977 to 1999 examining withholding or withdrawing nutrition and hydration by Riley et al. [50], identified several additional practice implications. Decisions regarding food and fluids may differ from other life-sustaining decisions and may fluctuate over time, depending on the changing health context. These choices are highly individualized, culture-bound, and difficult to discuss. This highlights nurses’ role for comprehensive assessment and histories and for facilitating the decision-making process for patients and families. Managing pain and suffering Pain management and control of symptoms such as dyspnea, anorexia, nausea, and fatigue offer frequent EOL dilemmas. The 1997 IOM study reported that Americans’ number one fear in dying was that they would die in excruciating pain [14]. Little is known about the impact of suffering and its effect on recovery from critical illness. However, there is emerging evidence that symptom distress in acute and critical care settings is associated with unfavorable outcomes and increased mortality [8]. Professional caregivers’ legal and ethical obligation to be competent in pain and symptom management often is breached [52]. Pain that is not treated effectively undermines the terminally ill person’s autonomy. Although control of pain is estimated possible in 95% of patients, many suffer from professional caregivers’ lack of knowledge and the stigma of narcotic use. Cardiovascular instability, ventilatory impairment, and gastrointestinal dysfunction commonly lead to limiting analgesia and sedation in CCUs [8]. Empirical evidence validates that continuous pain requires continuous pain relief. Yet, frequently analgesia is prescribed ‘‘as needed’’ (PRN) [21]. Clinicians who hesitate or refuse to administer

large doses of pain medication, sufficient to manage severe pain, do so based on unwarranted concerns about addiction, lack of knowledge about drug tolerance and dependence, and fear of respiratory depression hastening death [8,9,21,52]. The Federation of State Medical Board of the United States [37] Model Guidelines for the Use of Controlled Substances for the Treatment of Pain provide guidance for legal, effective pain management. Several recent studies of nurses have confused the issue of pain relief and euthanasia. With lack of conceptual clarity, some nurses believe that using opioids liberally is inappropriate and consistent with active euthanasia [23,53,54]. The U.S. Supreme Court, in its opinion dealing with assisted suicide, affirmed health care professionals’ obligation to provide adequate pain management, even if it hastens death [52]. This provides legal justification for use of deep or terminal sedation (sedated to unconsciousness), if there is no other way to relieve intolerable suffering [48,55]. In applying the concept of proportionality, this means that the greater the patient’s suffering, the greater the risk that can be taken in causing death, provided that the patient and/or surrogates understand and accept the risk [48]. From an ethical perspective, an act is viewed as right or good when it results from the good intention of the moral agent (e.g., physician or nurse). The rule of double effect provides moral justification based on the clinician’s primary good intent to control pain, not to cause the secondary morally indefensible effect of death [9,48,56]. Pellegrino [52] delineates the five conditions of this rule: (1) the act itself is good or at least morally neutral; (2) only the good effect is intended (relieving pain); (3) the good effect is not achieved through the bad effect (pain relief does not depend on hastening death); (4) there is no alternate way to attain the good effect (pain relief); (5) there is a proportionally grave reason for running the risk, e.g., relief of intolerable pain. Resuscitation decisions Cardiopulmonary resuscitation (CPR), introduced in 1960, was intended for victims of sudden cardiac or pulmonary arrest who had good survival prognosis [3,57]. CPR is now universally available to all institutionalized patients, including those with serious chronic illness [58], unless there is a specific do-not-

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resuscitate (DNR) order. A DNR excludes CPR in case of cardiac arrest but may allow other medical and nursing treatments. Patient care is affected by confusion about the exact intent of a DNR order, often arising from unclear hospital policies. Studies indicate considerable variation in DNR orders based on assessment of patients’ likelihood to survive and of family preferences [54,59,60]. Evidence exists that monitoring and physical care decrease for patients’ with DNR orders. Adherence by ICUs to published DNR standards, physician or ICU practice style, and physicians’ lack of knowledge and leadership in giving nursing staff clear directions also affect care delivery. Our ethical dilemma with DNR hinges on the conflict of sanctity of life versus quality of life. Professional caregivers are concerned about realistic outcomes, whereas the public’s perception of CPR is overly optimistic, compared with a low survival-todischarge ratio of 1:10 [3,57]. A clear mechanism for decision making is essential that considers therapeutic goals, timing, impact on the dying experience, and consequences for care and cost. The DNR order may affect whether the patient remains in ICU or whether the DNR should be suspended if surgery is required [61,62]. Patients and/or their surrogates must be able to exercise autonomy through the informed consent process. Theoretically, going against patient wishes opens providers to liability for ‘‘wrongful life,’’ battery or negligence [61]. Clear DNR policies addressing legal and ethical aspects are essential [60]. The medical order should be unambiguous in its intent. Terms such as ‘‘no code,’’ DNR, no CPR, or ‘‘comfort care only’’ lack clarity for directing care. The more recent modifications of ‘‘DNAR’’ (do not attempt resuscitation) and ‘‘AND’’ (allow natural death) also lack specificity, unless supported by clear protocols. Legal and ethical obligations direct that the order must be documented carefully in the patient’s record and communicated to all team members [57,60]. Medical futility Medical futility is a difficult dilemma in the patient-provider relationship as it pits expert medical judgment about appropriate, beneficial treatment for the patient against that person’s autonomy [63]. Coppa [64] differentiates futility as quantitative and qualitative. Quantitative or physiologic futility exists when empirical data and clinical experience indicates that treatment will have very low probability of benefiting the patient. In qualitative futility, an intervention may sustain unconsciousness but does not end total intensive dependence. An example of the

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latter is CPR that resuscitates a patient who will remain in a persistent vegetative state. A variety of reasons may motivate patients’ and families’ insistence for care deemed inappropriate. When patients died at home, loved ones were intimate parts of the dying process. Through bathing, touching, or providing special foods, families were ‘‘doing everything’’ and giving the best care possible. These simple acts of compassionate caring now are replaced by high tech interventions. Fueled by a sense of helplessness and frustration, families only available gesture of love and devotion may be the unrealistic request to ‘‘do everything’’ technologically [1]. Other motivations include denial; fear; religious belief in sanctity of life, irrespective of its quality; unrealistic expectations or lack of understanding of the treatment plan; language, cultural, and socioeconomic barriers; distrust of health care professionals and the care system; and belief in spontaneous remissions or miracles. The term ‘‘futile care’’ should be avoided, as it is a red-flag term for some families. Although particular interventions may be physiologically futile, care that provides palliation or comfort is never futile [59]. Schneiderman [65] states ‘‘The physician’s duty is to provide not merely an effect upon some organ, body part or physiologic function, but a benefit to the patient as a whole.’’ We must also be aware that implementing futile treatment diminishes the professional caregiver, both as a clinician and as a person [66]. A significant level of emotional distress occurs for nurses and other caregivers in these cases [20], exhibited by expressions such ‘‘nursing a corpse.’’ When patient-provider conflicts arise over treatment, we are ethically obliged to employ a dispute resolution process [65]. A fair-process approach has been developed by AMA [3] and in some states, dispute resolution mechanisms are built into legislative statutes [40]. Nurses may not be initiators of futile treatment but they play an important role in its prevention based on their clinically expert judgment. A patient care conference or ethics consultation is advisable to clarify EOL treatment when conflicting expectations arise. An example, increasingly common, is that of an implantable defibrillator persistently jolting an obviously moribund patient. Euthanasia and assisted suicide Active euthanasia is defined in an American Nurses Association (ANA) position statement [27] as someone other than the patient acting intentionally to end the patient’s life. It may be voluntarily, with the patient’s consent; or non-voluntarily, where the patient lacks decision-making capacity. Assisted sui-

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cide (AS) is distinguished from voluntary active euthanasia because the agent in AS is the patient. The United States Supreme Court in 1997 ruled unanimously that there is no constitutionally protected right to AS. However, individual states have the right to legalize it through state legislation [32,67]. The only American state to do so is Oregon [68]. Internationally, The Netherlands recently legalized the practice that previously had been illegal, but tolerated, if particular guidelines were followed. Nonmaleficence directs us away from aiding others to die as the intent of the act causes harm, the shortening or termination of life. Moral justification by those supporting AS centers on mercy through the principles of autonomy, non-maleficence, and beneficence [53,67,69 – 71]. Nurses are challenged deeply by AS because of commitment to patient advocacy. Troubling issues include whether advocacy requires support of a patient’s autonomous request for AS, whether AS destroys or protects human dignity, and whether hastening death can ever be compassionate and merciful. Almost universally, AS is condemned by professional health care organizations as inconsistent with core professional values. There is concern about the effect on the public perception of the healing professions being licensed to cause death as well as on the personal integrity of professionals. Thus, it is believed to be bad ethics and bad policy, for it gives opportunity to those who would abuse it [14,23, 26,27,31]. This is a small risk, but it should not be overlooked. Although some argue that AS returns control of dying to the patient; others believe that the measures enacted to safeguard patients from coercion leave ultimate control to medicine and society [69]. Formal legal-clinical procedures also lead to ‘‘bureaucratization’’ of the death process [3], further depersonalizing the event. The AS research base continues to develop. Current findings for predicting a predisposition to accept or request AS include those who accept suicide and persons with low self esteem, low life satisfaction, depression, loneliness, lack of social support, and high levels of stress. Persons with high religious levels generally disapprove of assisted suicide, while those with a high internal locus of control orientation are more likely to take EOL decisions into their own hands [71]. In the continuum of EOL care AS may be viewed as a palliative care option of last resort, in response to intractable suffering. Dame Cicely Saunders, founder of the British hospice movement admonished us that ‘‘intractable’’ does not mean impossible to relieve, rather ‘‘it is not easily treated’’ [21]. Thus, clinicians

are challenged to focus on effective pain and symptom control. An initial report on Oregon’s AS law offered reassurance that it was implemented appropriately and it served as a stimulant for improving palliative care [13]. However, others raise concern about the lack of reported data regarding the affected patients’ palliative care experience, and their emotional and financial status [68]. As the national debate continues, monitoring Oregon’s experience will be vital.

Implications for critical care practice Strategies to improve EOL clinical care Transition from cure to palliation Once critically ill patients’ primary treatment goals shift from cure to palliation, nursing care will be focused by three essential values of the hospicepalliative care philosophy: relief of pain and suffering, individual control and autonomy, and the value of personal integrity and healing [16,72]. This philosophy encompasses family needs, including respite and spiritual and bereavement care. ‘‘Letting go’’ is hardest for families and friends ‘‘surviving on the brink’’ as they prepare for life without their loved one. Family presence during the traumas of this struggle helps the grieving process for many [73]. However, as Chapple [74] points out, the switch from ‘‘rescue’’ to ‘‘letting nature take its course’’ is difficult for ICU caregivers and new rules must be learned. Core competencies, guidelines, and EOL care resource materials are becoming available to guide in this transition [16,30,31,37,72,73,75 – 77,94]. Cultural and spiritual care Attention by professional caregivers to patients’ physical suffering has increased; but spiritual suffering and distress remains slighted [76,78]. Cultural, spiritual, and religious beliefs and needs must be assessed and addressed [34,47,76]. Pastoral care, social services and the patient’s spiritual advisor should be encompassed in the interdisciplinary team. We must be in tune with the holistic being of our dying patients, as we are caring for their souls as well as their bodies. Oliver [79] suggests that nurses be invited to ‘‘dance with the angels’’ as we support the patient’s transformative state of passing into eternity. Valuing communication and communicating values Studies document that poor communication is patients’ and families’ biggest dissatisfaction with EOL care. Critical care conversations often are com-

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plicated by the unexpected nature of the illness, an incapacitated patient, and limited interactions with families, whose members have had few or limited discussion about quality of life issues [80]. Other communication barriers include lack of caregivers’ knowledge, time constraints, family dynamics, constantly changing health care teams, insensitive opinions about prognoses, and cultural differences [81]. This highlights the importance of teaching ethically important communication skills including giving bad news and conflict resolution and mediation related to treatment conditions [31,80,82,83]. Strategies to improve dialogue include: developing a personal relationship with death, communicating being genuine and present, creating a proper environment, being willing to give up control, and facilitating communication including use of family conferences [1,11,36,80,84 – 86]. Helpful decisionmaking behaviors include: encouraging advance planning, timely communications, clarifying families’ roles, facilitating family consensus, emotional support for family decisions, providing access to the patient before and after death, and accommodating family grief [31,87]. Behaviors that are not helpful include: postponing discussions regarding treatment withdrawal, delaying withdrawal once it is decided, placing full burden of decision making on one person, withdrawing from the family, and defining death as failure. Communicating values to significant others charged with future EOL decisions are the foundation of advance care planning [34,36,39]. Value histories and clinical scenario tools aid with reflection and deliberation [73,87]. These interactions enrich, comfort, and provide a sense of family integrity. Ideally, advance care planning is an ongoing conversation over time within the network of relationships as preferences may shift, emerging from a changing health and social context [34,36,39,41,42]. Continuity of conversation is an essential ingredient. When done collaboratively with families and professionals the process offers a sense of team building. Once admitted to CCU, patients are often cognitively incapacitated and unable to participate. Then the decision-making process is complicated by lack of familiarity between patients/ families and providers and burdened by the spiraling pace of care and time constraints that provide limited opportunity for building trusting relationships [11]. Influencing the clinical context of care Moral distress of caregivers Ministering to critically and terminally ill patients is emotionally intense for nurses. Guided by

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their code of ethics, nurses are motivated to fulfill their advocacy role. In reality, nurses may not be involved or have only a limited role in treatment decision-making processes [59,60]. Disagreeing with the best way to care for patients and not being able to influence the outcome leads to frustration [59]. Long-term consequences encompass emotional burnout, diminished empathy, and retreat from the profession that could compound the current crisis in staffing [20]. Witnessing suffering and death, caregivers need support, such as unit-level grief counseling and debriefing sessions [20]. Moral distress also may occur, when care decisions nurses believe most ethically appropriate are blocked from enactment by professional and institutional barriers [20,88,89]. Ideally, all team members should have optimal input into decision making, providing the benefit of differing viewpoints [12,47,88,90]. Yet empirical evidence, including the SUPPORT study, raise significant questions regarding ineffective communication within the interdisciplinary team and whether nurses have sufficient organizational power and prestige to impact decision making [12]. Nurses are often seen as passive participants rather than engaged in collegial deliberations. Clinically-based ethics education programs for nurses would provide the knowledge, skills, and support for enhanced participation [91]. The culture of critical care Improving care of the dying requires a change in clinicians’ attitudes and institutional policies. Interdisciplinary teamwork is needed and a collaborative model for a moral community must be developed [4,12,88,90]. To effect this, the culture of medicine and nursing and their interactions requires change. An ethically significant factor is an effective working relationship between and among nurses and physicians [12,88,90]. Beneficence and autonomy, as respect for persons, should not accrue solely to patients but also to nurses and other caregivers in our healing enterprise [90,92]. Role of ethics committees Ethics committees (ECs) serve as a medium for education, discussion, policy development, consultation, and case review and fulfill the Joint Commission on Accreditation of Healthcare Organizations’ mandate for an formalized ethical decision-making process. ECs can be valuable tools to promote reflective dialogue, mediation, and conflict resolution in ethically challenging cases. In addition, ethics consultation done proactively has been associated

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with a significant decrease in ICU length of stays for both survivors and non-survivors [8]. Research studies indicate that ECs can benefit by retrospective dialogue with patients and/or families, to provide important feedback for quality improvement [93]. Strategies to improve EOL education for critical care As goals of EOL care may change rapidly as a critically ill patient transitions to palliative care, effective interdisciplinary communication is essential [72]. The SUPPORT study and others indicate that the quality of EOL care is dependent on collaborative teamwork and both education and clinical practice must emerge from an interdisciplinary mindset [6,14,18,72,91]. Curricular content for interdisciplinary EOL care is available as a resource [6,31,72]. In a study examining needs related to basic and continuing education, ONS members were asked to rank their level of knowledge deficit on 12 core competencies of EOL care. The top three were how to talk with patients, pain control techniques, and comfort care nursing interventions [18]. Other studies echo the need to improve knowledge and attitudes about drug addiction and dependency and enhancing skills for pain and symptom management [12,81]. Resource materials for palliative care in ICUs now are available for the education of physicians [8] and nurses [94,95]. Strategies to impact EOL research for critical care Good ethical decisions are based in sound clinical data and this obliges us to apply and disseminate current evidence-based knowledge for alleviating pain, symptoms, and depression. EOL studies document a substantial prevalence of poorly managed distressing symptoms, including pain in critically ill patients [8,12,14,15]. The IOM study highlighted the need for research and the National Institutes of Health and the National Institute of Nursing Research have committed program funds to EOL research [13]. Appropriate outcome measures and quality indicators for care of the dying [1] and standardized, valid, reliable, practical instruments are needed [11]. Concurrent data collection and direct investigation of patient/family and provider perspectives are a challenge in the ICU environment [8]. Other barriers include the difficulty of assessing symptoms, compounded by patients’ impaired cognition or inability to communicate [8]. Medical records often are inadequate as alternate information sources as the psy-

chological or spiritual suffering of patients and families is seldom recorded [8]. Most studies have been retrospective, causing concern about distorted recollection [12]. Yet, it is difficult to identify relevant populations prospectively. Exploration of how cultural and institutional influences affect variability in limiting treatment is vital [12]. Distributive justice also suggests the need to determine the most optimal setting for those patients for whom palliative care is chosen, whether hospice, palliative care unit, other supportive care environment, even home; or remaining in ICU. Strategies to impact public policy and community dialogue Improving palliative care across all settings requires collaboration of patients, their significant others, clinicians, payers, policy makers, health care planners, and the community at large. Nurses have a pivotal role in advocating for better clinical care of the dying and affecting policy for health care system reform. The ethical dialogue that begins at the clinical bedside, and with our colleagues, must become a public dialogue within our communities. While empirical evidence will support decision making, there are many issues that are grounded in social and community values; thus, the decisions become moral and ethical based on judgment of those values [7]. Part of the policy debate must center on safeguards to protect vulnerable persons from the risk of error, abuse, or coercion, in a health care system driven by market forces [94]. Research data on quality, cost, access, and utilization must be made available for public policy debates. Distributive justice decisions about resource allocation do not belong at the bedside, rather as part of community policy development to assure fairness. Finally, a major public policy issue relates to the nursing shortage and economic and institutional pressures regarding nurse-patient ratios. Staffing shortages are a significant factor in nurses’ moral distress [88,89]. Nelson and Danis remind us, ‘‘availability of the bedside nurse to assess symptoms, administer medication, and provide other forms of support and comfort may be the single most important component of effective palliative care for the critically ill patient.’’ [8].

Closing thoughts As we reflect on death in America, we must remember that the national quest to improve care

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for the dying is just emerging. Earlier common wisdom marked clear distinctions between critical and terminal care. Thus, palliative care was postponed until patients’ deaths seemed imminent. The evidence now mounts that palliative care must be integrated as a component of comprehensive critical care [8]. High hurdles still confront us but we are encouraged, as more persons and organizations are sensitized to this mission. We must nurture hope for our dying patients and for success in transforming EOL care. Nuland, a surgeon, medical educator, and author of How We Die: Reflections on Life’s Final Chapter [17] challenges all who work with dying persons: [W]e need to find hope in other ways, more realistic ways, than in the pursuit of elusive and danger-filled cures. . . Hope should be re-defined. Some of my sickest patients have taught me of the varieties of hope that can come when death is certain. (p 233)

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[45] Pierce SF. Neonatal intensive care: Decision making in the face of prognostic uncertainty. Nurs Clin North Am 1998;33:287 – 97. [46] Beauchamp TL, Childress JF. Principles of Biomedical Ethics, ed 5. New York: Oxford University Press; 2001. [47] Vincent J-L. Cultural differences in end-of-life care. Crit Care Med 2001;29(Suppl):N52 – 5. [48] Quill TE, Lo B, Brock DW. Palliative options of last resort: A comparison of voluntarily stopping eating and drinking, terminal sedation, physician-assisted suicide, and voluntary active euthanasia. JAMA 1997;278:2099 – 104. [49] Ciment J. Procedures on dying patients are wrong, study concludes. Brit Med J 2000;320:137. [50] Riley JM, Mahoney MA, Fry ST, Feild L. Factors related to adult patient decision making about withholding or withdrawing nutrition and/or hydration. Online J Knowledge Synthesis Nurs 1999;6 (Document no. 3):1 – 20. [51] Smith SA. Controversies in hydrating the terminally ill patient. J IV Nurs 1997;2:193 – 200. [52] Pellegrino ED. Emerging ethical issues in palliative care. JAMA 1998;279:1521 – 2. [53] Dixon MD. The quality of mercy: Reflections on physician-assisted suicide. J Clin Ethics 1997;8: 290 – 302. [54] Dracup K, Bryan-Brown CW. Nurses and euthanasia: A tale of two studies. Am J Crit Care 1996;5:249 – 52. [55] Enck RE. Terminal sedation. Am J Hospice & Pall Care 2000;17:148 – 9. [56] Hawryluck LA, Harvey WRC. Analgesia, virtue, and the principle of double effect. J Pall Care 2000;16 (Suppl):S24 – 30. [57] Birtwistle J, Nielsen A. Do not resuscitate: An ethical dilemma for the decision-maker. Br J Nurs 1998;57: 543 – 9. [58] McIntyre KM. CPR in chronically ill patients in ICU. Arch Intern Med 1996;152:2181 – 3. [59] Sherman D. Branum K: Critical care nurses’ perceptions of appropriate care of the patient with orders not to resuscitate. Heart Lung 1995;24:321 – 9. [60] Thibault-Prevost J, Jensen LA, Hodgins M. Critical care nurses’ perceptions of DNR status. J Nurs Scholarship 2000;32:259 – 65. [61] Eckberg E. The continuing ethical dilemma of the donot-resuscitate order. AORN Journal 1998;67:783 – 785, 787, 789 – 790. [62] Keenan CH, Kish SK. The influence of do-not-resuscitate orders on care provided for patients in the surgical intensive care unit of a cancer center. Crit Care Nurs Clin North Am 2000;12:385 – 90. [63] Ewer MS. The definition of medical futility: Are we trying to define the wrong term? Heart Lung 2001;30: 3 – 4. [64] Coppa S. Futile care: Confronting the high costs of dying. JONA 1996;26:18 – 22. [65] Schneiderman LJ. Family demand for futile care. Lahey Clinic Med Ethics Newsletter 2001;3,8.

F.C. Kyba / Crit Care Nurs Clin N Am 14 (2002) 141–155 [66] Shotton L. Can nurses contribute to better end-of-life care? Nurs Ethics 2000;7:134 – 40. [67] Scanlon C. Supreme Court of the United States renders decision on physician assisted suicide. ANA Center for Ethics and Human Rights Communique 1997;6:1 – 2. [68] Foley K, Hendin H. The Oregon report: Don’t ask, don’t tell. Hastings Cent Rep 1999;29:37 – 42. [69] Salem T. Physician-assisted suicide: Promoting autonomy – or medicalizing suicide? Hastings Cent Rep 1999;29:30 – 6. [70] Schwarz JK. Assisted dying and nursing practice. Image: J Nurs Scholarship 1999;31:367 – 73. [71] White BC, Zimbelman J. Symposium on assisted suicide and nursing. J Prof Nurs 1999;15:141 – 69. [72] Mularski RA, Bascom P, Osborne ML. Educational agenda for interdisciplinary end-of-life curricula. Crit Care Med 2001;29(Suppl 2):N2 – 9. [73] Meyers TA, Eichhorn DJ, Guzetta C, Clark AP, Klein JD, Taliaferro E, et al. Family presence during invasive procedures and resuscitation: The experience of family members, nurses, and physicians. Am J Nurs 2000;100:32 – 42. [74] Chapple HS. Changing the game in the intensive care unit: Letting nature take its course. Crit Care Nurse 1999;19:25 – 34. [75] National Council of Hospice Professionals. Guidelines for curriculum development on end-of-life and palliative care in nursing education. (Available from the Nurse Section, National Council of Hospice Professionals), 1997. [76] Sumner CH. Recognizing and responding to spiritual distress. Am J Nurs 1998;98:26 – 31. [77] Weissman DE, Ambuel B, Hallenbeck J. Improving end-of-life care: A resource guide for physician education. Milwaukee, Medical College of Wisconsin, 1999. [78] Dunne T. Spiritual care at the end of life. Hast Cent Report 2001;31:22 – 6. [79] Oliver SL. Dancing with angels. Am J Hospice & Pall Care 2000;17:368. [80] Fins JJ, Solomon MZ. Communication in intensive care settings: The challenge of futility disputes. Crit Care Med 2001;29(Suppl 2):N10 – 5. [81] Bowman KW. Communication, negotiation, and mediation: Dealing with conflict in end-of-life decisions. J Pall Care 2000;16(Suppl):S17 – 23. [82] Fetters MD, Churchill L, Danis M. Conflict resolution at the end of life. Crit Care Med 2001;29:921 – 5. [83] Glaser V, with Buckman R, Byock I, Fry VL: Talking with patients and family. Patient Care 2000;34:16 – 8, 20, 29, 33 – 6. [84] Blatt L. Working with families in reaching end-of-life decisions. Clin Nurse Spec 1999;13:219 – 23. [85] Curtis JR, Patrick DL, Shannon SE, et al. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: Opportunities for improvement. Crit Care Med 2001;29(Suppl 2): N26 – 33. [86] Larsen DG, Tobin DR. End-of-life conversations:

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Evolving practice and theory. JAMA 2000;284: 1573 – 8. Baggs JG, Mick DJ. Collaboration: A tool addressing ethical issues for elderly patients near the end of life in intensive care units. J Gerontol Nurs 2000;26: 41 – 7. Corley MC. Ethical dimensions of nurse-physician relations in critical care. Nurs Clin North Am 1998;33: 325 – 37. Hamric AB. Moral distress in everyday ethics. Nurs Outlook 2000;48:199 – 201. Aroskar MA. Ethical working relationships in patient care: Challenges and possibilities. Nurs Clin North Am 1998;3:313 – 24. McDaniel C. Enhancing nurses’ ethical practice: Development of a clinical ethics program. Nurs Clin North Am 1998;33:299 – 311. Jezuit DL. Suffering of critical care nurses with endof-life decisions. Medsurg Nurs 2000;9:145 – 52. Jacobson JA, Francis LP, Battin MP, Green DJ, Grammes C, Van Riper J, et al. Dialogue to action. J Clin Ethics 1997;8:359 – 71. Puntillo KA, Stannard D. The intensive care unit. In: Ferrell B, Coyle N, editors. Textbook of Palliative Care Nursing, New York, Oxford University Press; 2001. p. 609 – 21. Ferrell B, Coyle N. editors. Textbook of Palliative Care Nursing, New York: Oxford University Press; 2001.

Further reading American Association of Colleges of Nursing. (1997). A peaceful death. (Report of the Robert Wood Johnson Endof-Life Care Roundtable.) Washington, DC: Author. American Association of Critical-Care Nurses. (1999). Designing an agenda for the nursing profession on end-of-life care. (Report of the Nursing Leadership Consortium on End-of-Life Care Roundtable.) Washington, DC: Author. American Medical Association. (1999). Educating physicians on end-of-life care (EPEC) trainers’ guide. (EPEC Project). Chicago, IL: Author. Byock I. (1998). Peace and possibilities at the end of life. New York: Riverhead Books, G.P. Putnam Sons. Curtis JR, Rubenfield GD. (Eds.). (2000). The transition from cure to comfort: Managing death in the ICU. New York: Oxford University Press. Decisions Near the End-of-Life. A series of teaching modules co-developed by Education Development Center, Inc., and the Hastings Center. Resource companion: Solomon MZ, Jennings B, Fins JJ, et al. (1997). Decisions near the end of life: Faculty guide, (3rd ed.). Newton, MA: Educational Development Center. Available from Decisions

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National Coordinating Center, Education Development Center, Inc., 55 Chapel Street, Newton, MA 02458-1060. Web page access at http://www.edc.org/cae. Ferrell B, Coyle N. (Eds.). Textbook of palliative care. New York, Oxford University Press, 2001. Field MJ, Cassel CK. (Eds.). Committee on Care at the End-of-Life. (1997). Approaching death: Improving care at the end-of-Life. (Report of the Institute of Medicine Task Force.) Washington, DC: National Academy Press. Lynn J, Harrold J. (1999). Handbook for mortals: Guidance for people facing serious illness. New York: Oxford University Press. Lynn J, Schuster JL, Kabcenell AK. (2000). Improving care for the end of life: A sourcebook for health care managers and clinicians. New York: Oxford University Press. McFarlane R, Bashe P. (1999). The complete bedside companion: No-nonsense advice on caring for the seriously ill. Fireside Edition. Meyer C. (1998). A good death: Challenges, choices, and care options. Mystic, CT: Twenty Third Publications. Nuland SB. (1994). How we die: Reflections on life’s final chapter. New York: Alfred A. Knopf. Solomon MZ, Romer AL, Heller KS. (Eds.). (2000). Innovations in end-of-life care: Practical strategies & international perspectives. Larchmont, NY: Mary Ann Liebert, Inc. Publishers. Weissman DE, Ambuel B, Hallenbeck J. (1999). Improving end-of-life care: A resource guide for physician education. Milwaukee, WI: Medical College of Wisconsin. American Academy of Hospice and Palliative Medicine http://www.aahpm.org/ Listing of certified palliative care physicians. American Association of Colleges of Nursing http:// www.aacn.nche.edu/elnec/curriculum.htm Information re: End-of-Life Nursing Education Consortium (ELNEC) curriculum, workshops, resources.

ter professional education, reform of pain-relief drug laws, and new payment options. Cancer Care, Inc. http://www.cancercare.org Mission to promote health and quality of life by disease/injury control and prevention. Center to Improve Care of Dying http://www.gwu.edu/~cicd Interdisciplinary team engaged in research, public advocacy and education to improve EOL care for dying and their families. City of Hope Medical Center http://www.cityofhope.org Variety of resource materials; (Betty Ferrell, Director, Mayday Pain Resource Center). Dying Well. http://www.dyingwell.com/ Defining wellness through EOL; resources for persons facing life-limiting illness. EPEC Project Web Site http://www.ama-assn.org/ethic/epec/ American Medical Association’s project on Education for Physicians on End-of-life Care. A model ‘‘train-the-trainer’’ curriculum. Facts on Dying http://www.chcr.brown.edu/dying/factsondying.htm Resource center at Brown University. Gateway to Bioethics Web Sites: http://www.mcw.edu/ bioethics/bioweb.html Site links to over 25 USA centers studying bioethics. Growth House, Inc. http://www.growthhouse.org/ International gateway to resources for life-threatening illness and EOL issues. Hospice and Palliative Nurses Association http://www. hpna.org Home page; links to other EOL sites. International Association for Hospice and Palliative Care http://www.hospicecare.com International resource information. Last Acts http://www.lastacts.org National coalition of more than 680 organizations to improve EOL care through sharing ideas and solutions by professional caregivers, institutions, and individuals. National Hospice and Palliative Care Organization http:// www.nhpco.org Information, advocacy, professional education, referrals to local hospice & palliative care programs.

Americans for Better Care of the Dying http://www.abcdcaring.com Source for news about EOL issues, including legislation.

Nursing Ethics Network (NEN). (2001) http://www.bc.edu/ nursing/ethics Site dedicated to ethics information and service for practicing nurses.

American Pain Society http://www.ampainsoc.org Multidisciplinary organization; mission to advance pain-related research, education.

Partnership for Caring http://www.partnershipforcaring.org National collaborative; resources for public and professionals. Operates a 24-hour hotline (800. 989.9455) to respond to EOL crises of patients and families.

Approaching Death: Improving Care at the End of Life http://www2.nas.eduhcs21da.html Committee report from the Institute of Medicine, calls for improved EOL care, bet-

Project on Death in America http://www.soros.org/death/ Mission: transform culture & experience of dying & bereave-

F.C. Kyba / Crit Care Nurs Clin N Am 14 (2002) 141–155 ment through initiatives in research, scholarship, humanities & arts; foster innovations care, public & professional education, & public policy. Robert Wood Johnson Foundation http://www.rwjf.org/ mainhtml USA’s largest philanthropy dedicated exclusively to health and health care. See the ICU Peer Workgroup of

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RWJ’s Promoting Excellence in End-of-Life Care Project at http://www.promotingexcellence.org. University of Ottawa, Institute of Palliative Care http:// www.pallcare.org/ Resource center for Canadian palliative care information.