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Facing the terminal illness of the top administrator of a specialty practice presented the sobering challenges of human support and organizational management. In addition to addressing the impending loss that affected all employees, the group had to ensure current operations and manage a smooth transition to new administrative leadership.
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.
Terminally ill patients are very susceptible to infections, which are the result of disease-related processes and/or therapy-induced mechanisms. These patients are already subject to multiple severe symptoms and associated comorbid conditions, with much resultant distress. Infection increases this symptom burden and further reduces quality of life. We have retrospectively investigated the prevalence of infection and clinical course in 102 consecutive patients who died after admission to a tertiary palliative care unit and assessed the site-specific frequency of infection, pathogenic organisms involved, and the pattern of antibiotic agents used. The prevalence of symptoms and comorbid conditions on admission and during the progress phase of care were noted. Median overall survival of the total cohort was 12 days. The median survival of patients with infections was 22 days. Thirty-seven patients (36.3%) were diagnosed with 42 separate infections. The sites of infections were the urinary tract (42.5%), the respiratory tract (22.9%), blood (12.5%), skin and subcutaneous tissues (12.5%), and the eyes (10.0%). There were 20 separate positive cultures isolated from specimens obtained from 13 individual patients. Three isolates were obtained from 1 patient, 2 isolates obtained from 5 patients, and 1 isolate was obtained from each of the 7 remaining patients. Escherichia coli was the most common pathogen isolated. Eleven patients with infections (31.4%) were diagnosed on admission, and antibiotic treatment was commenced within 48 hours of admission in 21 patients (60%). Overall antibiotic response and symptom control of infections was observed to be a minimum of 40%. Psychological distress was common in this group of patients (P = 0.001) as were disabling symptoms on admission, such as pain, immobility, and weakness. Symptoms indicating poor survival, such as severe pain and dyspnea, were not significantly associated with infection. Decreased patient survival in this cohort was not significantly associated with the presence of bacterial infection (P = 0.07), irrespective of whether or not a positive culture isolate was obtained. We conclude that appropriate management of infection resulted in enhanced palliative symptom control.
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.
Children with terminal illness receive substantial amounts of care from their parents within their home, a palliative care facility or general hospital. Whilst there is a long history of research exploring child and family experiences and coping styles within these settings, the focus has not been on fathers' participation in care-giving. This phenomenon can be explained by traditional sex-role socialisations whereby men are ostensibly conditioned as breadwinners and mothers remain embedded as the primary carers for children, particularly when illness arises. Nevertheless, nurses report that men do provide direct care-giving or seek to be more involved in caring for their child. This literature review offers opportunities for health professionals to reflect on the significance of gender in parenting the terminally ill child and to develop empathy for men experiencing difficulties in their role as care-givers. As there is little literature available on this topic, this paper portrays men's experiences and importantly the barriers they encounter in meeting their desire to care. The approach provides a suitable basis for developing a research agenda to promote competencies and relevance for fathers in their role as care-giver.
BACKGROUND: The care of terminally ill patients is a challenge for nurses that has raised special interest in recent years. Several studies have shown a stereotyped negative attitude in nurses towards terminally ill patients. However, all have used methods with several limitations. AIM: The aim of the study presented in this paper was to identify the nurses' attitude to the terminally ill patient in Catalonia, Spain, and the relationship of this attitude to different socio-demographic data (type of centre, shift, years of experience, age and sex) by means of a new quantitative method based on the free word-association test. METHODS: One hundred and seventy-five nurses working in 18 hospitals and hospices in Catalonia, Spain were included in the study. Data were analysed by the Associative Semantic Field Differential method by means of the computer programme CONTEXT and a quantitative evaluation of the degree of attitudes positivity was obtained. RESULTS: The study revealed a general slight negative trend in attitudes towards the terminally ill patient. A more positive attitude was observed in older caregivers and in women. The positivity in attitude decreased from morning to night shift. No differences were observed between nurses working in hospitals and those working in hospices. CONCLUSIONS: We conclude that nursing attitudes can be analysed by methods such as that used in this study. Attempts can be made to modify this attitude in caregivers by means of training programmes and stimulating awareness of an adequate professional approach.
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.
Despite a growing interest in holistic care for the terminally ill, financial needs are often not addressed. This is reflected in the fact that some people with a terminal illness are not accessing disability benefits, despite eligibility. The present paper is based on a study investigating delays experienced by cancer patients in obtaining Attendance Allowance (AA) by special rules, and missed opportunities for professionals to assist with claims. The study took place in a hospice where patients were referred to social work professionals for assistance in claiming AA. In each case, the patient had been eligible for some time before the referral. Over a 5-month period, all 22 patients who were referred completed a questionnaire. Data were collected to show their personal characteristics, how they came to be referred for assistance and their level of knowledge of AA. The length of time that people had already been eligible and the time taken to claim were recorded to show the amount of lost benefit. The health and social care professionals whom these patients had seen since becoming eligible were also recorded. A wide range of people experienced delays in accessing AA. Their total lost income ranged from pound 110.60 to pound 1106.00. The median was pound 387.10 and four people died before being awarded AA. Only four patients were fully aware of their eligibility. Every person had seen between one and four professionals since becoming eligible for the benefit, without the meeting resulting in a claim. Increased income aids the management of illness, and information and assistance to claim disability benefits need to be made available in a consistent manner at the earliest opportunity. Health and social care professionals are in a position to provide this. However, changes to the claims process, proposed by the present author, could ensure that AA is received automatically, without delay and without extensive paperwork.
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.
The number of terminally ill prison inmates rises each year. Mental health professionals are uniquely prepared to provide therapy during the end-of-life process with their assessment, training, empathy, and communication skills. This case study examines the six-month therapy of one terminally ill inmate, using a client-centered approach. Drawing from existential therapy, the review of meaningful life events in the client's life clarifies current goals and the value of the current final stage of life. Ethical issues that arose are discussed, including pain management and compassionate release. Creative solutions to these ethical dilemmas were implemented through consideration of the overt and underlying goals of the inmate, the necessary rules and protocols of the prison, and in conjunction with professional codes of ethics.
BACKGROUND: Terminal illness imposes substantial burdens--economic and otherwise--on patients and caregivers. The cause of these burdens is not understood. OBJECTIVE: To determine the mechanism for economic and noneconomic burdens of terminal illness and to identify potential ameliorating interventions. DESIGN: In-person interviews of terminally ill patients and their caregivers. SETTING: Six randomly selected U.S. sites: Worcester, Massachusetts; St. Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado. PARTICIPANTS: 988 terminally ill patients and 893 caregivers. MEASUREMENTS: Needs for transportation, nursing care, homemaking, and personal care; subjective perception of economic burden; expenditure of more than 10% of household income on health care costs; caregiver depression and sense of interference with his or her life; and patient consideration of euthanasia or physician-assisted suicide. RESULTS: Of all patients, 34.7% had substantial care needs. Patients who had substantial care needs were more likely to report that they had a subjective sense of economic burden (44.9% compared with 35.3%; difference, 9.6 percentage points [95% CI, 3.1 to 16.1]; P = 0.005); that 10% of their household income was spent on health care (28.0% compared with 17.0%; difference, 11.0 percentage points [CI, 4.8 to 17.1]; P < or = 0.001); and that they or their families had to take out a loan or mortgage, spend their savings, or obtain an additional job (16.3% compared with 10.2%; difference, 6.1 percentage points [CI, 1.4 to 10.6]; P = 0.004). Patients with substantial care needs were more likely to consider euthanasia or physician-assisted suicide (P = 0.001). Caregivers of these patients were more likely to have depressive symptoms (31.4% compared with 24.8%; difference, 6.6 percentage points [CI, 0.4 to 12.8]; P = 0.01) and to report that caring for the patients interfered with their lives (35.6% compared with 24.3%; difference, 11.3 percentage points [CI, 5.0 to 17.7]; P = 0.001). Caregivers of patients whose physicians listened to patients' and caregivers' needs had fewer burdens. CONCLUSIONS: Substantial care needs are an important cause of the economic and other burdens imposed by terminal illness. Through empathy, physicians may be able to ameliorate some of these burdens.
Delirium is highly prevalent in terminally ill patients, especially in the last weeks of life, when some cognitive impairment develops in as many as 85% of patients. Delirium is associated with increased morbidity in terminally ill patients and can interfere with pain and symptom control. The cause of delirium is usually multifactorial and often cannot be found or reversed in dying patients. Nonpharmacologic and pharmacologic interventions are effective in controlling the symptoms of delirium in terminally ill patients. Haloperidol and other newer neuroleptics are safe and effective in eliminating delirium for some patients. In approximately one third of patients, delirium can be managed successfully only by providing sedation.
CONTEXT: Understanding why some terminally ill patients desire a hastened death has become an important issue in palliative care and the debate regarding legalization of assisted suicide. OBJECTIVES: To assess the prevalence of desire for hastened death among terminally ill cancer patients and to identify factors corresponding to desire for hastened death. Design Prospective survey conducted in a 200-bed palliative care hospital in New York, NY. PATIENTS: Ninety-two terminally ill cancer patients (60% female; 70% white; mean age, 65.9 years) admitted between June 1998 and January 1999 for end-of-life care who passed a cognitive screening test and provided sufficient data to permit analysis. MAIN OUTCOME MEASURE: Scores on the Schedule of Attitudes Toward Hastened Death (SAHD), a self-report measure assessing desire for hastened death among individuals with life-threatening medical illness. RESULTS: Sixteen patients (17%) were classified as having a high desire for hastened death based on the SAHD and 15 (16%) of 89 patients met criteria for a current major depressive episode. Desire for hastened death was significantly associated with a clinical diagnosis of depression (P=.001) as well as with measures of depressive symptom severity (P<.001) and hopelessness (P<.001). In multivariate analyses, depression (P=.003) and hopelessness (P<.001) provided independent and unique contributions to the prediction of desire for hastened death, while social support (P=.05) and physical functioning (P=.02) added significant but smaller contributions. CONCLUSIONS: Desire for hastened death among terminally ill cancer patients is not uncommon. Depression and hopelessness are the strongest predictors of desire for hastened death in this population and provide independent and unique contributions. Interventions addressing depression, hopelessness, and social support appear to be important aspects of adequate palliative care, particularly as it relates to desire for hastened death.
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.
BACKGROUND: Our understanding of terminal illness and its consequences has been predominantly based on models derived from expert definition, rather than the patient's perspective. More recently, quality of life tools have been developed to enable patient choice in responses. However, an even broader approach may be needed to help identify goals for care for patients who are terminally ill. AIM: The aim of this paper is to report on an exploratory, qualitative study exploring what people living with terminal illness considered were the areas of priority in their lives. METHODS: Ten people living with terminal cancer were interviewed. Analysis of the interviews incorporated principles of narrative analysis and grounded theory. FINDINGS: Over 30 categories were identified and collated into five inter-related themes (personal/intrinsic factors, external/extrinsic factors, future issues, perceptions of normality and taking charge) encompassing the issues of importance to all participants. Each theme focused on 'life and living' in relation to life as it was or would be without illness. Practical issues of daily living and the opportunity to address philosophical issues around the meaning of life emerged as important areas. The central theme, 'taking charge', concerned with people's levels of life engagement, was integrally connected to all other themes. CONCLUSIONS: The findings suggest that the way in which health professionals manage patients' involvement in matters such as symptom relief can impact on existential areas of concern. Understanding patients' perspectives in relation to each theme may assist health professionals to develop management strategies appropriate to their needs. The findings challenge some aspects of traditional 'expert-defined' outcome measures. As this was an exploratory study, further work is needed to test and develop the model presented.
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.
Most knowledge about health seeking behaviour during terminal illness among people with HIV/AIDS in Africa is derived from health facility based studies. This study uses data from a longitudinal community study in a rural area in north-west Tanzania, where interviews were conducted on health seeking behaviour and expenditure with relatives who lost an adult family member in recent months. HIV status and verbal autopsy were used to assess if service use differed by cause of death. During terminal illness, people with HIV/AIDS made extensive use of both traditional and modern health services, and more so than people who died from other causes. The main factor associated with this difference was the longer duration of illness. Expenses associated with HIV/AIDS terminal illness were higher than for other causes of death, largely because of the longer duration of illness. The direct medical costs were about 1.5 times higher than the funeral costs and the sum of the medical and funeral costs exceeded the estimated annual household income per capita in this population. In conclusion, the rapid increase in numbers of terminally ill adults as a result of HIV/AIDS is likely to lead to an increased burden on all layers of the health system and household resources, in part because of the relatively long duration of HIV/AIDS terminal illness. However, almost half of all HIV/AIDS deaths in this rural population were not admitted to hospitals during their terminal illness and only a small proportion died in hospitals. If more effective treatment becomes available, a further increase in health service use and direct medical costs to households and community is likely.