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Terminally ill patients who refuse life-supporting treatments and express a wish to die are often viewed in the same light as suicidal patients who are medically well. Terminally ill patients who are depressed should be treated with antidepressants, but if the wish to die persists, it should be respected.
Terminally ill persons and their families will communicate their own prayer needs to healing persons who are attending carefully. A number of guidelines may also be helpful to healers in developing the personal characteristics needed to minister effectively and in determining when and how to pray with patients.
In an effort to determine if terminally ill patients with AIDS had greater religious and spiritual care needs than other terminally ill patient populations, particularly those with cancer, a study was conducted in a community-based hospice in the southeast. The purpose of the study was to compare the perceptions of spiritual well-being, loneliness, social support, health hardiness, pain, and functional status among terminally ill clients with cancer and terminally ill clients with AIDS in a hospice setting and to examine predictors of spiritual well-being in a hospice population. A sample of 55 hospice patients completed the Correlates of Spiritual Well-Being Scale (COSWEB), which includes a demographic data sheet and instruments to measure spiritual well-being, loneliness, health hardiness, social support, functional status, and pain. Patients with AIDS reported significantly lower spiritual well-being than did patients with cancer and other chronic, terminal illnesses. Patients with AIDS also reported significantly greater loneliness than other patient populations. The number of social supports for patients with AIDS was significantly lower than for cancer patients and other groups; moreover, patients with AIDS were significantly more dissatisfied with their supports than other patient groups. The best predictors of spiritual well-being in this study were social support and loneliness, which explained 47% of the variance in spiritual well-being. The results of this study suggest differences between specific groups of hospice patients. Patients with AIDS may be less spiritually well than other terminally ill patient populations due to decreased support systems, dissatisfaction with supports, greater feelings of loneliness, younger ages on entry to hospice, fewer family supports, lack of recognized long-term relationships, and related issues such as homophobia, perceived rejection by religious denominations, unstable living environments, economic disadvantages, and less time to process life events/meaning. Findings in this study and similar future studies can better enable health care providers to allocate time and resources to various terminally ill patient populations to achieve higher quality care outcomes in general and greater spiritual well-being in particular.
Terminally ill adolescents, a heterogeneous group, face unique problems in coming to terms with the prospect of death and dying. In parallel, the psychosocial sequelae of a terminal illness in the adolescent, and their effects on the family and health professionals, present unique challenges for management. Using a developmental framework, we examine issues surrounding the care of dying adolescents and present strategies for their management.
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The experience of terminal illness can best be viewed as a situation of multiple losses involving the dying person, family members and friends, and the health care providers engaged in offering services to them. It is a major transition during which the central participants must cope with the personal meanings of the forthcoming death as well as other losses brought about by the disease process, medical treatments, and the need to provide care for the dying person. How families adapt to the stresses and changes imposed by the experience of living with dying depends on their previous experiences with death, their established patterns of communication about serious matters, and their decision-making practices. Some individuals and families are at greater risk than others for developing maladaptive responses and behaviors during and after the experience of terminal illness. Risk factors to be considered in making hypotheses about the potential for maladaptive reactions include the strength of the attachment to the dying person, uncontrollable and distressing symptoms, and coping limitations associated with age and other factors contributing to increased vulnerability to the demands of continuous change. Working effectively with different kinds of families during the transition of terminal illness can best be accomplished within a conceptual framework built upon knowledge about people undergoing change. The concept of safe conduct can serve as an overall guide for the creation of nursing services designed to offer personalized care and accessibility of professional help at times of maximum need by the family. Assisting dying patients and their families toward the achievement of their personal goals is fundamental to the idea of safe conduct. The delivery of nursing care in terminal illness requires an orientation to assessment as an ongoing process that makes use of knowledge about disease processes, medical treatments, individual and group adaptations to loss, risk factors suggestive of maladaptive responses, and family dynamics in relation to crisis and change. Although nurses bring expert knowledge about available treatments and resources, the process of assessment and decision-making about what needs to be done can be best accomplished through a process of contracting with the patient and family. These mutual agreements need to be concerned with the establishment of specific goals, plans for achieving them, available resources within the family, division of responsibility, time limits on the achievement of objectives, and mutual evaluation of the process and the outcomes.(ABSTRACT TRUNCATED AT 400 WORDS)
The seriously ill or terminally ill child with cancer has received inadequate pain control in the past, partly due to physicians' and nurses' fears and misconceptions regarding the administration of effective pain medications to a child. Advances in assessment techniques in the infant and young child, as well as increasing use of pain assessment questionnaires and VAS in the older child, have mandated changes in administration of analgesia to children. It is the responsibility of the health-care team of provide adequate pain control to the ill child, using knowledgeable assessment and monitoring skills. The goal of therapy for the dying child is to maintain comfort and support the child and the family. Providing analgesia in the hospital or the home has proven safe and effective when administered either orally or parenterally, and comfort of the child is achieved.
Terminally ill geriatric patients have been found to prefer the type of care provided by home health hospices to the life-sustaining technologies received in hospitals. Nevertheless, disproportionately few dying elderly patients enroll in available hospice programs despite their preferences for, and Medicare's coverage of, hospice services. This study examines several critical factors expected to facilitate or inhibit the utilization of home-based hospice services. Seventy-six critically ill aged patients, their physicians and primary caregivers (e.g., family members) were interviewed about their attitudes and actions regarding the treatment of dying patients. The results indicate that patients who acknowledge their terminal health status, whose physicians disclose the terminal prognosis to them and do not fear malpractice, whose primary caregivers know about hospice and believe the patient would be receptive to enrollment in such a program, have a relatively high probability of home health hospice utilization.
The care of terminally ill patients with severe chronic pain should provide treatment that permits these patients to close their lives with dignity and purpose. Analgesics, both opioid and nonopioid, are available and when properly used can provide effective relief of pain for most terminally ill patients. It is incumbent on the physician and on all others who care for the dying patient with severe chronic pain to understand clearly the dynamics of the pain experience, the clinical pharmacology of analgesics, and the needs of the patient, family, and friends.
Nurses assume a primary role in the care of chronic and terminally ill individuals in their homes and are in a strategic position to foster or hinder hope. Using a descriptive survey design, home health care nurses and hospice nurses were asked to rate proposed hope interventions as to use and effectiveness in facilitating hope in their chronically ill and terminally ill clients. One hundred and fifty-eight registered nurses, representative of six hospice agencies and six home care agencies in a Midwestern state, completed the Hope Intervention Questionnaire. Provision of comfort and pain relief emerged as the most effective and most frequently used hope interventions by both the home health care nurses and the hospice nurses. The top 15 interventions, though ranked in slightly different order, were the same for hospice nurses and the home health care nurses and were reflective of the multi-dimensions of hope. The findings of this study have practical importance to nursing practice as they provide a framework for selecting strategies to foster hope in the chronically ill and terminally ill population.
The need to treat dehydration in terminally ill patients has become a very controversial topic. Numerous reports in the literature illustrate opposing view-points from both clinical and ethical perspectives. Arguments for the maintenance of hydration in terminally ill patients have tended to come from "the traditional medical model". Many health care professionals looking after terminally ill patients have reacted to the generalized use of intravenous fluids in dying patients and the perceived negative effects of this management. Our palliative care group has argued that the viewpoint that dehydration in dying patients is not a cause of symptom distress overlooks commonly reported problems, such as agitated delirium, that can be prevented or reversed by the management of dehydration. This review presents a summary of the traditional arguments, a different perspective on the controversy, biochemical parameters reported in terminally ill cancer patients, recent dehydration research, and the use of hypodermoclysis and rectal hydration. We conclude that the data reported to date are insufficient to allow a final conclusion on the benefit or harm of dehydration in terminally ill patients. Nevertheless, it is worth considering that while some dying patients may not suffer any ill effects from dehydration, there may be others who do manifest symptoms, such as confusion or opioid toxicity, that might be alleviated or prevented by parenteral hydration.
Pain associated with terminal illness is an extremely stressful problem for the patient as well as family members. Helping family members cope increases their effectiveness as caregivers and improves their own quality of life. Conversely, improving the patient's ability to cope decreases stress on other family members. Optimal treatment of pain in the terminally ill may be conceptualized and administered from a family perspective. Methods for helping families of terminal pain patients cope are organized around a theme of enhancing feelings of control and self-efficacy. Control over pain and related problems may be maximized by providing education, improving decision making and assertiveness skills, and by teaching specific techniques for pain and stress management, including proper analgesic use, progressive relaxation, imagery, distraction techniques, and time management. These techniques are described from a family perspective in this paper.
Denial in the terminally-ill is often seen as a problem that health care professionals, particularly social workers need to fix. Rather than seeing denial as a part of acceptance, it is seen as just the opposite. Denial surfaces to establish control in an uncontrollable situation such as terminal illness. The social worker's challenge is to help the patient and family see their own strengths and make their own decisions. As the patient and family regain some control over their lives, denial is often replaced with other, more functional coping mechanisms.
Physical therapists sometimes hesitate to treat terminally ill patients because they believe the approach to them should differ from the approach to other patients. This belief is based on the assumption that patient needs during terminal illness differ from the needs of other patients. Some important similarities in patient reactions to chronic and terminal illness are explained. A conceptual framework of 'little deaths' is presented for comparing the two types of illness.
While cultural awareness provides direction for planning effective nursing interventions at all stages of health and illness, this article specifically addresses applications for patients who are terminally ill. Professional nurses encounter unique challenges in caring for terminally ill patients. Assisting patients to achieve an "appropriate death" requires communication and collaboration among patients, family members, and professional caregivers. Since patients and their families represent many systems of complex beliefs and values, nurses must be aware of the impact of cultural pluralism on nursing assessment and intervention in terminal illness. Reordering priorities and redistributing resources have been identified as new approaches in caring for terminally ill patients and their families. Two concepts that cut across all cultural boundaries are loss and grief. Expressions of loss and grief take on a variety of forms among members of diverse cultures. It is critical that nurses recognize, understand, and respect each family's culture-specific patterns with regard to terminal illness. Understanding the culture will lead to the design of culturally appropriate nursing care for patients and families. Culture brokerage is defined as an act of translation, where messages, instructions, and belief systems are exchanged between cultural groups. This strategy has the potential to increase understanding among those with diverse cultural backgrounds, resulting in increased patient/family satisfaction within the supportive care setting. Consonance between patients' needs and nurses' understanding of those needs will lead to more culturally appropriate intervention strategies.
Two US courts of appeals have ruled that competent, terminally ill patients have a constitutional right to physician-assisted suicide. The cases are now before the US Supreme Court, which is expected to issue a ruling later this year. This article analyzes the keystone of the courts' ruling: their assertion that competent, terminally ill patients who are being kept alive on life support are equivalent to competent, terminally ill patients who do not require such support. Because the former are permitted to end their lives by refusing treatment, the courts found that the latter also have a right to determine the time and manner of their death, through prescriptions for lethal doses of medication. This article analyzes whether the courts' thinking is premised on a clinically plausible view of the care of terminally ill patients. Based on a discussion of common situations involving terminal illness, we argue that the courts' reasoning is deeply flawed. The article also analyzes how the implications of the courts' reasoning might undermine the care of terminally ill patients.
General issues pertaining to the care of terminally ill patients in their homes are discussed. Lay home-care givers should be recruited as soon as the decision to care for a terminally ill patient at home has been made. Several home-care givers are usually needed for each patient, and the recruitment search should extend beyond the immediate family. Training of home-care givers and patients should be planned so that it fits schedules and covers all details, such as infusion device operation, documentation, and who to contact in case of changes in patient condition. In addition to training, care givers need psychosocial support. In the interdisciplinary approach to home care, pharmacists, nurses, physical and occupational therapists, social workers, and others all participate on a home-care team. Clinical staff members often shoulder much of the responsibility for assessing patient status, informing the physician, and coordinating changes in therapy. The home environment demands flexible policies and procedures and simple, concise methods of monitoring and documentation, especially when intractable pain is being managed. Because less control is possible in the home setting than in the hospital, it may be more difficult to comply with legal requirements concerning controlled substances. Final decisions about how home-care providers will be reimbursed are awaited. Practice standards for home care are being defined and recognized. Home care is a rational alternative for many terminally ill patients but raises new challenges.