Nursing and End-of-Life Care
One of the most difficult realities that nurses face is that, despite our very best efforts, some patients will die. Although we cannot change this fact, we can have a significant and lasting effect on the way in which patients live until they die, the manner in which the death occurs, and the enduring memories of that death for the fam-ilies. Nursing has a long history of holistic, person- and family-centered care. Indeed, the definition of nursing offered by the American Nurses Association (ANA) highlights nursing’s com-mitment to the diagnosis and treatment of human responses to illness (ANA, 1995). There is perhaps no setting or circumstance in which care—that is, attention to the human responses—is more important than in caring for the dying patient.
Knowledge about end-of-life decisions and principles of care is essential to supporting patients during decision making and in end-of-life closure in ways that recognize their unique responses to illness and that support their values and goals. Education, clinical practice, and research concerning end-of-life care are evolving, and the need to prepare nurses and other health care professionals to care for the dying has emerged as a priority. The National Institute for Nursing Research has taken the lead in coordinating research related to end-of-life care within the National Institutes of Health (Grady, 1999). At no time in nurs-ing’s history has there been a greater opportunity to bring re-search, education, and practice together to change the culture of dying, bringing much-needed improvement to care that is rele-vant across practice settings, age groups, cultural backgrounds, and illnesses.
In the past three decades there has been a surge of interest in the care of the dying, with an emphasis on the settings in which death occurs, the technologies used to sustain life, and the challenges of trying to improve end-of-life care. The focus on care of the dying has been motivated by the aging of the population, the prevalence of and publicity surrounding life-threatening illnesses such as cancer and AIDS, and the efforts of health care providers to build a continuum of service that spans the lifetime from birth until death (Lesparre & Matherlee, 1998). Although there are more opportunities than ever before to allow a peaceful death, the knowledge and technologies available to health care providers have made the process of dying anything but peaceful. According to Callahan (1993a), Americans view death as what happens when medicine fails, an attitude that often places the study of death and improvement of the dying process outside of the focus of modern medicine and health care. Numerous initiatives aimed at improving end-of-life care have been launched in recent years, spurred by a widespread call for substantive change in the way Americans deal with death.
The Palliative Care Task Force of the Last Acts Campaign (Last Acts, 1997) identified the following as precepts or princi-ples underlying a more comprehensive and humane approach to care of the dying:
· Respecting patients’ goals, preferences, and choices
· Attending to the medical, emotional, social, and spiritual needs of the dying person
· Using strengths of interdisciplinary resources
· Acknowledging and addressing caregiver concerns
· Building mechanisms and systems of support
In the last century, chronic, degenerative diseases replaced com-municable diseases as the major causes of death. Although tech-nological advances in health care have extended and improved the quality of life for many, the ability of technologies to prolong life beyond the point that some would consider meaningful has raised troubling ethical issues. In particular, the use of technology to sustain life has raised perplexing issues with regard to quality of life, prolongation of dying, adequacy of pain relief and symptom management, and allocation of scarce resources. The major eth-ical question that has emerged concerning the use of technology to extend life is: Because we can prolong life through a particular intervention, does it necessarily follow that we must do so? In the latter half of the 20th century a “technological imperative” practice pattern among health care professionals emerged, along with an ex-pectation among patients and families that every available means to extend life must be tried.
Decisions to apply every available technology to extend life have contributed to the shift in the place of death from the home to the hospital or extended care facility. In the earlier part of the lastcentury, most deaths occurred at home. Because of this, most fam-ilies had direct experience “being with” death, providing care to family members at the end of life and mourning for the loss of loved ones. As the place of death shifted to the hospital, families be-came increasingly distanced from the death experience. By the early 1970s, when hospice care was just beginning in this country, tech-nology had become the expected companion of the critically and terminally ill (Wentzel, 1981). The implications of technological intervention at the end of life continue to be profound, affecting a societal view of death that influences how clinicians care for the dying, how family and friends participate in care, how patients and families understand and choose among end-of-life care options, how families prepare for terminal illness and death, and how they heal following the death of a loved one.
Although each individual experiences terminal illness uniquely, such illness is also shaped substantially by the social and cultural contexts in which it occurs. In the United States, life-threatening illness, life-sustaining treatment decisions, dying, and death occur in a social environment where illness is largely considered a foe and where battles are either lost or won (Benoliel, 1993). A care/ cure dichotomy has emerged in which health care providers may view cure as the ultimate good and care as second best, a good only when cure is no longer possible (Benoliel, 1993; Gadow, 1988). In such a model of health or medical care, alleviating suffering is not as valued as curing disease, and patients who cannot be cured feel distanced from the health care team, con-cluding that when treatment has failed, they too have failed. Pa-tients and families who have internalized the socially constructed meaning of care as second best may fear that any shift from cu-rative goals in the direction of comfort-focused care will result in no care or poorer-quality care, and that the clinicians on whom they have come to rely will abandon them if they withdraw from the battle for cure.
The reduction of patients to their diseases is exemplified in the frequently relayed message in late-stage illness that “nothing more can be done.” This all-too-frequently used statement communi-cates the belief of many clinicians that there is nothing of value to offer patients who are beyond cure. In a care-focused perspec-tive, mind, body, and spirit are inextricable, and treating the body without attending to the other components is considered inad-equate to evoke true healing (Upledger, 1989; Wendler, 1996). This expanded notion of healing as care, along with and beyond cure, implies that healing can take place throughout life and outside the boundaries of contemporary medicine. In this ex-panded definition, healing is transcendent and its boundaries are unlimited, even as body systems begin to fail at the end of life (Byock, 1997).
Clinicians’ attitudes toward the terminally ill and dying remain the greatest barrier to improving care at the end of life. Kübler-Ross illuminated the concerns of the seriously ill and dying in her seminal work On Death and Dying, published in 1969. At that time, it was common for patients to be kept uninformed about life-threatening diagnoses, particularly cancer, and for physicians and nurses to avoid open discussion of death and dying with their patients (Krisman-Scott, 2000; Seale, 1991). Kübler-Ross taught the health care community that having open discussion about life and death issues did not harm patients, and that the patients infact welcomed such openness. She was openly critical of what she called “a new but depersonalized science in the service of pro-longing life rather than diminishing human suffering”. She taught the health care community that healing could not take place in a conspiracy of silence, and that as clinicians break the silence and enter the patient’s world, they too can be healed by their struggles and strengths. Her work re-vealed that, given adequate time and some help in working through the process, patients could reach a stage of acceptance where they were neither angry nor depressed about their fate (Kübler-Ross, 1969).
Clinicians’ reluctance to discuss disease and death openly with patients stems from their own anxieties about death as well as misconceptions about what and how much patients want to know about their illnesses. In an early study of care of the dying in hospital settings, sociologists Glaser and Strauss (1965) dis-covered that health care professionals in hospital settings avoided direct communication about dying in hope that the patient would discover it on his or her own. They identified four “aware-ness contexts,” described as the patient’s, physician’s, family’s, and other health care professionals’ awareness of the patient’s sta-tus and their recognition of each other’s awareness:
1. Closed awareness: The patient is unaware of his or her ter-minal state while others are aware. Closed awareness may be characterized by families and health care professionals conspiring to guard the “secret,” fearing that the patient would not be able to cope with full disclosure about his or her status, and the patient’s acceptance of others’ accounts of his or her “future biography” as long as they give him or her no reason to be suspicious.
2. Suspected awareness: The patient suspects what others know and attempts to find out. Suspected awareness may be triggered by inconsistencies in families’ and clinicians’ communication and behavior, discrepancies between clini-cians’ accounts of the seriousness of the patient’s illness, or a decline in the patient’s condition or other environmental cues.
3. Mutual pretense awareness: The patient, the family, and the health care professionals are aware that the patient is dying but all pretend otherwise.
4. Open awareness: All are aware that the patient is dying and are able to openly acknowledge that reality.
Glaser and Strauss (1965) also identified a pattern of clinician behavior in which those who feared or were uncomfortable dis-cussing death developed and substituted “personal mythologies” for appraisals of what level of disclosure patients actually wanted. For example, clinicians avoided direct communication with pa-tients about the seriousness of their illness based on their beliefs that (1) patients already knew the truth or would ask if they wanted to know, or (2) patients would subsequently lose all hope, give up, or be psychologically harmed by disclosure.
Glaser and Strauss’ findings were published more than 35 years ago, yet their observations remain valid today. Although a grow-ing number of health care providers are becoming comfortable with assessing patients’ and families’ information needs and dis-closing honest information about the seriousness of illness, many still avoid the topic of death in hopes that the patient will ask or find out on his or her own. Despite progress on many health care fronts, those who work with dying patients have identified the persistence of a “conspiracy of silence” about dying.
Denial on the part of the patient and family about the seriousness of terminal illness also has been cited as a barrier to discussion about end-of-life treatment options. Kübler-Ross (1969) was one of the first to examine patient denial and expose it as a useful cop-ing mechanism that enables patients to gain temporary emotional distance from something that is too painful to contemplate fully. Patients who are characterized as being in denial may be using that strategy to preserve important interpersonal relationships, to protect others from the emotional effects of their illness, or to protect themselves because of fears of abandonment.
Connor (1992) studied a small group of terminally ill cancer patients who were characterized by their use of denial as a coping mechanism. Participants in the experimental group were ques-tioned in structured interviews about their perceptions of the most difficult aspects of having cancer and those actions that they or others take that make these difficulties easier or more dif-ficult to bear. They were offered psychosocial intervention that consisted largely of therapeutic communication followed by a postintervention assessment of their use of denial as a defense mechanism. The use of denial by patients in a control group was also assessed, but these patients did not receive the psychosocial intervention. The researcher concluded that terminally ill pa-tients using denial respond favorably to sensitive psychosocial in-tervention, as indicated by decreased scores on an instrument to measure denial. Connor acknowledged, however, that additional research is needed to gauge the timing of such interventions ac-cording to some measure of patient readiness.
In a more recent study, researchers reported that while the ma-jority of a sample of 200 patients with advanced cancer in their final weeks of life were completely aware of their medical prognosis, a combined total of 26.5% were either unaware or only partially aware (Chochinov, Tataryn, Wilson, Ennis & Lander, 2000). Depression was nearly three times greater in those patients who were unaware of their prognosis. The researchers concluded that denial of prognosis is more likely in patients with underlying psy-chological or emotional distress. Similarly, Chow and colleagues (2001) reported that many patients surveyed about their under-standing of palliative radiation therapy for advanced cancer be-lieved that their disease was curable, that the radiation therapy would cure their cancer, or that the therapy would prolong their lives. Importantly, most also reported that they were unfamiliar with the concept of radiation therapy, were not given informa-tion, or were not satisfied with the information their physicians had provided. Clearly, further research is needed to examine the complex interplay between patients’ misconceptions about ad-vanced illness, their underlying psychological states, and clinicians’ persistent lack of candor in discussing treatment expectations and prognosis.
The question of how to communicate with patients in a way that acknowledges where they are on the continuum of acceptance, while providing them with unambiguous information, remains a challenge. Zerwekh (1994) analyzed stories from 32 hospice nurses and concluded that nurses in a hospice setting were adept at in-terventions deemed important in care of the dying, namely truth telling and encouraging patient autonomy. Although she ac-knowledged that each individual views “truth” differently, she observed that hospice nurses participating in the study used com-munication skills to assist the patient and family to discuss end-of-life issues. Hospice nurses deliberately spoke about sensitive matters that were usually avoided and gave patients and families truthful representations of their status when patients were in transition from curative to palliative care. Although timing of the ques-tions takes experience, speaking the truth can be a relief to patients and families, enhancing their autonomy by making way for truly informed consent as the basis for decision making.
The assisted suicide debate has aimed a spotlight on the adequacy and quality of end-of-life care in the United States. Assisted sui-cide refers to providing another person the means to end his orher own life. Physician-assisted suicide involves the prescription by a physician of a lethal dose of medication for the purpose of ending someone’s life (not to be confused with the ethically and legally supported practices of withholding or withdrawing med-ical treatment in accordance with the wishes of the terminally ill individual).
Judeo-Christian beliefs support the view that suicide is a vio-lation of natural law and the law of God (Helm, 1984; Sorenson, 1991). However, there have recently been calls for the legaliza-tion of assisted suicide. Although the preference to take one’s own life over awaiting death has been evident through the ages, these recent efforts to legalize assisted suicide underscore the need for changes in the ways individuals with terminal illnesses are cared for and treated at the end of their lives. This is further empha-sized by the efforts of groups such as the Hemlock Society to have physician-assisted suicide legalized and the Hemlock Society’s publication of information to the public describing methods for ending one’s own life when such assistance from physicians is not available.
Although assisted suicide is expressly prohibited under statu-tory or common law in the majority of states, the calls for legal-ized assisted suicide have highlighted inadequacies in the care of the dying. In 1990, Dr. Jack Kevorkian, a retired pathologist, as-sisted a 54-year-old woman with early Alzheimer’s disease to end her life using a device that he had devised to allow a patient to control the infusion of a lethal dose of potassium chloride. In 1999, after 130 deaths and nine trials, Kevorkian was convicted on second-degree murder charges in the death of a 52-year-old man with amyotrophic lateral sclerosis and is currently serving a 10 - to 25-year prison sentence in Michigan. In a telephone poll conducted the week following the conviction, 55% of respon-dents disagreed with the verdict (Langer, 1999).
Meanwhile, public support for physician-assisted suicide has resulted in a number of state ballot initiatives. In 1994, voters ap-proved the Oregon Death with Dignity Act, the first such leg-islative initiative to pass. This law provides for terminally ill patients’ access to physician-assisted suicide under very controlled circumstances. After numerous challenges, a majority of Orego-nians voted against an attempted repeal, and the law was imple-mented in 1997. The most recent challenges to the law included the 1999 federal Pain Relief Promotion Act, a bill designed to de-rail the implementation of the Oregon law by prohibiting the use of federally controlled substances for physician-assisted suicide, and a 2001 directive from Attorney General John Ashcroft to the Drug Enforcement Agency to track and prosecute physicians who prescribe under the Oregon law. There is an ongoing battle in the courts over this issue, and while Oregon is currently the only state with a statute legalizing physician-assisted suicide, it is likely that the issue will be pursued in the courts and through ballot mea-sures in other states.
Whereas proponents of physician-assisted suicide argue that terminally ill individuals should have a legally sanctioned right to make independent decisions about the value of their lives and thetiming and circumstances of their deaths, its opponents argue for greater access to symptom management and psychosocial support for individuals approaching the end of life. Numerous ethical and legal issues have been raised, including voluntariness and au-thenticity of requests in relation to the mental competence and decision-making capacity of patients who request physician-assisted suicide, the existence of underlying untreated clinical depression or other suffering, and issues of overt or perceived co-ercion. Assisted suicide is opposed by nursing and medical orga-nizations as a violation of the ethical traditions of nursing and medicine. The ANA Position Statement on Assisted Suicide ac-knowledges the complexity of the assisted suicide debate but clearly states that nursing participation in assisted suicide is a vi-olation of the Code for Nurses. The ANA Position Statement further stresses the important role of the nurse in supporting effective symptom management, contributing to the creation of environments for care that honor the patient’s and family’s wishes, and ascertaining and addressing their concerns and fears (ANA, 1994).