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PubMed1998

Cost analysis of palliative care for terminally ill cancer patients in the UK after switching from weak to strong opioids. Palliative Care Advisory Committee.

OBJECTIVE: We constructed a UK-based decision model of palliative care for terminally ill cancer patients who were switched from a weak to a strong opioid so that the expected direct healthcare costs in the UK could be estimated from the time a patient commenced a strong opioid until death. DESIGN: Decision analysis techniques were used to estimate the expected total direct healthcare cost per patient, stratified according to the first choice of strong opioid. The model was based on prescription data on 1975 terminally ill cancer patients who were on the Intercontinental Medical Statistics database, Mediplus (IMS Ltd, Middlesex, England). Resource-use data were obtained from published literature, a Delphi Panel and an advisory panel with expertise in palliative care. MAIN OUTCOME MEASURES AND RESULTS: The expected cost of managing terminally ill cancer patients after they switched from a weak to a strong opioid ranged from 2391 pounds sterling (Pounds) to 3701 Pounds at 1995/1996 prices, depending primarily on the patient's duration of survival. Sensitivity analyses showed that the cost could be as low as 1500 Pounds or as high as 6000 Pounds, depending on resource use (at 1995/1996 prices). The key cost drivers were: hospice care, hospitalisation, general practitioner (GP) consultations and specialist nurse visits. In contrast, neither the choice of opioid nor managing constipation impacted substantially on the expected cost. Approximately two-thirds of the expected total cost was incurred by the UK National Health Service (NHS), with the remainder incurred by voluntary and charitable sectors. Hospice care and hospitalisation collectively accounted for between 50 and 80% of the expected costs. Management of patients in the community by the primary healthcare team accounted for between 10 and 40% of the costs. The acquisition cost of opioids accounted for between 2 and 8% of the expected cost and discounting the cost of these drugs sold to hospitals did not impact substantially on the total expected costs. The use of other resources such as antiemetics, NSAIDS, antidepressants and gastrointestinal drugs accounted for up to 3% of the expected cost. CONCLUSION: The expected cost of palliative care in the UK healthcare setting ranged from approximately 2500 Pounds to 4000 Pounds (1500 Pounds to 6000 Pounds in the sensitivity analysis) depending on the length of survival after patients switch from weak to strong opioids. Since opioids account for only 2 to 8% of expected costs, factors other than economic issues, such as tolerability profile, patient preference and convenience of use, should form the basis of clinical decision-making between opioids with similar analgesic efficacy.

Analgesics, Opioid↗
PubMed2005

Disclosure of prognosis to terminally ill patients: attitudes and practices among French physicians.

BACKGROUND: Disclosure of the prognosis to terminally ill patients is a strong prerequisite for integrating the physical, psychological, spiritual, and social aspects of end-of-life care. OBJECTIVE: This study aimed to assess French physicians' general attitudes and effective practices (with patients followed up to death recently) toward such disclosure. DESIGN/SUBJECTS: We used data from a cross-sectional survey conducted among a national sample of 917 French general practitioners, oncologists, and neurologists. RESULTS: A majority of respondents opted for prognosis disclosure only at patients' request, very few opted for systematic disclosure without patient's request, and a significant minority opted for systematic concealment. Concerning deceased patients described by respondents, 44.5% of competent patients were informed of prognosis by their physician, 27.3% were informed by someone else, 9.0% refused to be informed, and 19.2% were simply not informed. Concealment was more frequent for older patients, and physicians involved in a nongovernmental organization (NGO) for patients' support were more likely to disclose the prognosis, even without patient's request. CONCLUSIONS: Disclosure of the prognosis to terminally ill patients is still far from systematic in France. Further research is needed to better understand the motivations of French physicians' disclosure practices, which are probably culturally shaped.

Adult↗
PubMed1998

Seven deaths in Darwin: case studies under the Rights of the Terminally Ill Act, Northern Territory, Australia.

BACKGROUND: During the 9 months between July, 1996, and March, 1997, the provision of euthanasia for the terminally ill was legal in the Northern Territory of Australia. Seven patients made formal use of the Rights of the Terminally Ill (ROTI) Act; four died under the Act. We report their clinical details and the decision-making process required by the Act. METHODS: We taped in-depth interviews with the general practitioner who provided euthanasia. Further information was available from public texts created by patients, the media, and the coroner. FINDINGS: All seven patients had cancer, most at advanced stages. Three were socially isolated. Symptoms of depression were common. Having met criteria of the Act, some patients deferred their decision for a time before proceeding with euthanasia. Medical opinions about the terminal nature of illness differed. INTERPRETATION: Provision of opinions about the terminal nature of illness and the mental health of the patient, as required by the ROTI Act, created problematic gatekeeping roles for the doctors involved.

Aged↗
PubMed2004

Incidence and underlying etiologies of bronchial secretion in terminally ill cancer patients: a multicenter, prospective, observational study.

Although bronchial secretion is frequently observed in terminally ill cancer patients and can cause significant distress for both patients and family members, the pathophysiology is unclear. The primary aim of this study was to investigate the incidence and underlying etiologies of bronchial secretion. A multicenter, prospective, observational study was conducted on consecutive terminally ill patients with lung or abdominal malignancies. Primary physicians and nurses prospectively evaluated patients' symptoms. Of 310 patients enrolled, bronchial secretions were observed in 41% in the final 3 weeks, and oral/bronchial suctioning, with considerable distress, was required in 9%; bronchial secretions were severe in 4.5% of all patients. Multiple logistic regression analyses revealed that the determinants of the development of bronchial secretion were primary lung cancer, pneumonia, and dysphagia. There were no statistically significant effects of severity of peripheral edema and pleural effusion on development of bronchial secretions and requirement for oral/bronchial suctioning. Etiology-based classification of bronchial secretion is useful to identify the most suitable palliative treatments and to clarify treatment efficacy in each specific pathophysiology.

Abdominal Neoplasms↗
PubMed2002

Clinical estimation of survival and impact of other prognostic factors on terminally ill cancer patients in Oman.

A prospective study was carried out in the only tertiary oncology department in Oman to analyse the pattern of various prognostic factors in terminally ill cancer patients and their impact on these patients. Between September 1999 and February 2001, terminally ill cancer patients with solid tumours who fulfilled the eligibility criteria were included. All of them were coded Do Not Resuscitate (DNR). Clinical estimation of survival as well as recording of different symptoms and signs was carried out for each patient. Survival was calculated from the date of the DNR coding to the date of death. A total of 162 patients were included. Mean survival time was 41.5 days (median 10 days). The gastrointestinal tract (GIT) was the most common site of malignant disease, followed by the breast. Univariate analysis of evaluable patients showed that performance status (PS), dry mouth, presence of delirium, anorexia, peripheral oedema, absence of bone metastasis, low lymphocyte count and low albumin level had significant effects on survival. Multiple regression analysis showed that PS and oedema were the only independent predictors of survival. Clinical prediction of survival was correlated with observed survival. Patient's PS, presence of peripheral oedema and clinical estimate of survival are good predictors of survival in terminally ill cancer patients.

Adult↗
PubMedDate not supplied

Pain and desire for hastened death in terminally ill cancer patients.

The purpose of this study was to assess the relationship between pain and the desire for hastened death in terminally ill cancer patients. The participants were 120 terminally ill cancer patients under palliative treatment from June 2003 to November 2004. Patients completed a pain assessment tool, the Greek Brief Pain Inventory (G-BPI), and a self-report measure of the desire for hastened death, the Greek Schedule of Attitudes Toward Hastened Death (G-SAHD). Moderate but statistically significant associations were found between some of the severity and interference items of G-BPI and G-SAHD; more specifically, between G-SAHD and G-BPI3, "worst pain in the last 24 hours" (r = 0.279, P = .002); G-SAHD and G-BPI4, "least pain in the last 24 hours" (r = 0.253, P = .005); and G-SAHD and G-BPI5, "average pain in the last 24 hours" (r = 0.283, P = .002). A stronger association was revealed between G-SAHD and G-BPI8, "relief provided by pain treatment and medications in the last 24 hours" (r = -0.326, P = .000). Multiple regression analyses including the enter model and the forward model were conducted. According to the enter model, the strongest predictors of hastened death were items G-BPI6, "current pain"; G-BPI8, "relief provided by pain treatment and medications in the last 24 hours"; G-BPI9i, "interference of pain in general activity"; and G-BPI9iii, "interference of pain in walking." According to the forward model, significant predictors of the desire for death were items G-BPI5, "average pain in the last 24 hours"; G-BPI6, "current pain"; G-BPI9i, "interference of pain in general activity"; and G-BPI9ii, "interference of pain in mood," all of which were statistically significant (P = .000-.042). Pain appeared to have a statistically significant relationship with the desire for hastened death. Effective treatment by healthcare professionals should be provided to reduce pain and cancer-related symptoms as well as the desire for hastened death.

Adult↗
PubMed1995

Desire for death in the terminally ill.

OBJECTIVE: Euthanasia and physician-assisted suicide have become prominent medical and social issues. This study investigated the prevalence of the desire for death in terminally ill patients, the stability of this desire over time, and its association with psychiatric disorders. METHOD: Two hundred terminally ill inpatients were given semistructured interviews that assessed their desire for death and evaluated them for major and minor depressive episodes according to the Research Diagnostic Criteria. Each patient also completed a short form of the Beck Depression Inventory and provided ratings of pain and social support. When possible, patients who expressed a desire for death received a follow-up interview after a 2-week interval. RESULTS: Although occasional wishes that death would come soon were common (reported by 44.5% of the patients), only 17 (8.5%) of these individuals acknowledged a serious and pervasive desire to die. The desire for death was correlated with ratings of pain and low family support but most significantly with measures of depression. The prevalence of diagnosed depressive syndromes was 58.8% among patients with a desire to die and 7.7% among patients without such a desire. Follow-up interviews were conducted with six patients; in four cases, the desire to die had decreased during the 2-week interval. CONCLUSIONS: The desire for death in terminally ill patients is closely associated with clinical depression--a potentially treatable condition--and can also decrease over time. Informed debate about euthanasia should recognize the importance of psychiatric considerations, as well as the inherent transience of many patients' expressed desire to die.

Adult↗
PubMed2001

Determinants of the sensation of thirst in terminally ill cancer patients.

While a sensation of thirst causes severe distress for a certain proportion of cancer patients in the terminal stage, the factors contributing to this symptom have not been established. To clarify the association between sensation of thirst and medical factors, especially dehydration, a cross-sectional observational study was performed on terminally ill cancer patients receiving inpatient hospice care. On admission to a palliative care unit, 88 consecutive patients underwent blood sampling and were requested to rate the intensity of thirst on a visual analogue scale (VAS). Physicians prospectively evaluated factors that might potentially be contributing to the symptom. The mean VAS score for thirst was 5.0+/-2.8, and 18% of the patients complained of severe thirst with a VAS score of > or = 8. No significant correlations were observed between the VAS score for thirst and the values of total protein, blood urea nitrogen (BUN), creatinine, sodium, osmolality, hematocrit, atrial natriuretic peptide (ANP), and biochemical dehydration defined by the levels of BUN, creatinine, sodium and osmolality. On the other hand, dehydration defined by ANP level (< or = 15 pg/ml), hyperosmolality (> or = 300 mosmol/kg), gastrointestinal cancer, survival, performance status, oral intake, vomiting, and stomatitis were significantly associated with the severity of thirst. In addition, mouth breathing and opioids were determined to be a potential clinical cause of severe thirst when a retrospective chart review was carried out. In conclusion, sensation of thirst is a frequent symptom in terminally ill cancer patients and is associated with dehydration, hyperosmolality, poor general conditions, stomatitis, oral breathing, and opioids. Careful assessments and treatment of underlying causes is important to alleviate patients' distress.

Aged↗
PubMed1996

Symptom profile in terminally ill AIDS patients.

A study protocol to record prospectively, frequency and intensity of symptoms in terminally ill AIDS patients was developed. Other information included mode of transmission, active intravenous drug use, regular visits of family/friends to the ward, the use of symptom-control drugs, and death without family or partner. The study population was selected from patients admitted to the wards or followed in the Clinic or Day Center of the Department of Infectious Diseases of the Catholic University, Rome. Inclusion criteria were diagnosis of AIDS prior to 12 months and advanced stage AIDS (defined with standardized criteria). To standardize the analysis of data, the terminal phase was considered to start 3 months before death (T1). From January 1, 1993 to December 12, 1993, 266 patients (208 males, 58 females) were enrolled. By June 30, 1995 168 patients had died and were considered for analysis. The most frequent symptoms at T1 were anorexia (63.1%), fatigue (60.1%), pain (60.1%), fever (47.6%), and cough (37.5%). At the end week (T6) the most frequent symptoms were fever (81.5%), fatigue (70.2%), dyspnea (68.1%), and pain (58.9%). In two-thirds of the patients, symptom-control drugs were used, most frequently nonopioid analgesics (39.9% at T1 and 56.5% at T6) and antipyretics (38.7% at T1 and 53.6% at T6). Opioid analgesics were used in 19% of patients at T1 and in 28.6% at T6. Almost one-third of the patients (29.2%) died alone without having family, their partner, or a friend near. Considering the high frequency of treatable symptoms in terminally ill AIDS patients, the use of palliative therapy should be emphasized. Flexibility and patient-directed care should be used in deciding care plans to avoid overhospitalization and promote alternative care.

Acquired Immunodeficiency Syndrome↗
PubMedDate not supplied

Educational needs of home caregivers of terminally ill patients: literature review.

Hospice care continues to be a rapidly growing philosophy of care at the end of life. One of the fundamental principles of hospice is the role of a primary caregiver to provide for the needs of the terminally ill loved one. Typically, a spouse, adult child, sibling, close friend, or significant other fills this role. Usually, the caregiver has no formal training in caregiving and is learning all aspects of providing for all the needs of the patient. This is an awesome responsibility and quite overwhelming for most caregivers. A research synthesis was completed to assess the educational needs of caregivers of terminally ill patients. The computerized literature search of several databases found very few studies on the educational needs of caregivers. The few studies that have been done have used both quantitative and qualitative approaches, using a variety of assessment tools, looking at several different populations, over varied time periods. In spite of the variety of methods and populations studied, all the studies came to similar conclusions. The needs of the studied caregivers fall into three main categories: needing information on meeting the physical needs of the patients, community resources, and the patient's illness. The findings provide a basis for further research to build a comprehensive educational program that maximizes the role of the caregivers of terminally ill patients.

Adaptation, Psychological↗
PubMed1975

Drug therapy in terminally ill patients.

The drug treatment of terminally ill patients is reviewed. The treatment of the major discomforting symptoms of degenerative diseases--pain, anxiety, nausea, vomiting and depression--is reviewed. The use of phenothiazines, anticholinergic drugs and corticosteroids is discussed. To help patients keep track of their drugs, use of a medication schedule card is recommended.

Adrenal Cortex Hormones↗
PubMed1990

A survey of signs, symptoms and symptom control in 30 terminally ill children.

The notes of 30 terminally ill children with various diagnoses were searched for reports of symptoms that had occurred during their last month of life. All had stayed at Helen House, a hospice for children, for part or all of that time. The results were analysed for symptom frequency and resistance to treatment. Over four-fifths of the children were recorded as having pain in the last month of life. In a smaller number, symptoms such as muscle spasm and excessive secretions proved particularly difficult to control. The identification of symptoms in brain-damaged and young children, and the control of some of the more resistant symptoms, are discussed.

Adolescent↗
PubMed1976

Care of the terminally ill at home.

Care of the terminally ill at home demands the attention of the medical and paramedical community. Patients who choose to remain at home while death approaches must be given full physical, emotional and psychological support by the attending physician and home care services personnel. In 1974 the Vancouver early hospital discharge home care service provided such care to 47 patients. Generally both patient and family were happy with the program. A few families were unable to cope for more than a few days but most continued the care almost to the end, a large number (14) keeping the patient at home until death occurred. Added benefits are the lower costs and the freeing of hospital beds.

Adolescent↗
PubMed2003

A systematic review of physicians' survival predictions in terminally ill cancer patients.

OBJECTIVE: To systematically review the accuracy of physicians' clinical predictions of survival in terminally ill cancer patients. DATA SOURCES: Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases as well as hand searching. STUDY SELECTION: Studies were included if a physician's temporal clinical prediction of survival (CPS) and the actual survival (AS) for terminally ill cancer patients were available for statistical analysis. Study quality was assessed by using a critical appraisal tool produced by the local health authority. DATA SYNTHESIS: Raw data were pooled and analysed with regression and other multivariate techniques. RESULTS: 17 published studies were identified; 12 met the inclusion criteria, and 8 were evaluable, providing 1563 individual prediction-survival dyads. CPS was generally overoptimistic (median CPS 42 days, median AS 29 days); it was correct to within one week in 25% of cases and overestimated survival by at least four weeks in 27%. The longer the CPS the greater the variability in AS. Although agreement between CPS and AS was poor (weighted kappa 0.36), the two were highly significantly associated after log transformation (Spearman rank correlation 0.60, P < 0.001). Consideration of performance status, symptoms, and use of steroids improved the accuracy of the CPS, although the additional value was small. Heterogeneity of the studies' results precluded a comprehensive meta-analysis. CONCLUSIONS: Although clinicians consistently overestimate survival, their predictions are highly correlated with actual survival; the predictions have discriminatory ability even if they are miscalibrated. Clinicians caring for patients with terminal cancer need to be aware of their tendency to overestimate survival, as it may affect patients' prospects for achieving a good death. Accurate prognostication models incorporating clinical prediction of survival are needed.

Analysis of Variance↗
PubMedDate not supplied

Family physicians' attitudes toward death and the terminally-ill patient.

Family physicians often experience a continuing relationship with the terminally-ill patient. Like other physicians, they may experience difficulty in these relationships. We surveyed 441 family physicians practicing in South Carolina to determine their personal attitudes toward death, and their feelings and reactions toward terminally-ill patients and their families. Physicians aged 50 years and older had a significantly more positive attitude toward death than did physicians aged 25-34 years (p less than .05). In addition, more positive attitudes were present in physicians who had a strong religious orientation (p less than .002) or had received some death education instruction in medical school (p less than .002). The study suggests that the basic concepts of death and dying should be included in medical school curricula. In addition, a medical education series offering practitioners an opportunity to express their feelings about this topic might also be beneficial.

Adult↗
PubMed1998

Educational needs among pediatricians regarding caring for terminally ill children.

BACKGROUND: According to the Accreditation Council on Graduate Medical Education and the Ambulatory Pediatrics Association, pediatricians need to be instructed in caring for terminally ill children as a part of residency training. However, a systematic approach to education in end-of-life care is lacking in most residency programs. OBJECTIVES: To assess pediatricians' self-perception of their coping skills regarding death and dying at The New York Hospital-Cornell Medical Center, New York City, NY, if they felt further support and education were needed in this area, and which modes of instruction respondents thought would be most useful. METHODS: Data based on a questionnaire distributed to pediatricians at The New York Hospital are presented. RESULTS: The following topics are discussed: (1) existing level of education and support in caring for terminally ill patients; (2) attitudes of pediatricians regarding discussions of diagnosis and prognosis with dying children and their families; (3) pediatricians' perceived need to limit emotional involvement with terminally ill children; (4) attendance of funeral or memorial services of patients by pediatricians; (5) experience of patient death as a failure; and (6) expressed need for support and instruction in death and dying based on level of training. CONCLUSION: Educational interventions and support in this area are needed.

Adult↗
PubMed1993

Dissociation between the wishes of terminally ill parents and decisions by their offspring.

OBJECTIVE: To assess the attitude and factors affecting decision-making by offspring for life-sustaining measures toward their elderly terminally ill parents. DESIGN: Survey SETTING: Acute geriatric department of a university-affiliated teaching hospital. PATIENTS AND PARTICIPANTS: 108 offspring of 48 terminally ill elderly patients were interviewed. MEASUREMENTS: The attitude of offspring regarding life-sustaining measures based on a comprehensive questionnaire, administered by face-to-face interview, that included clinical, social, and religious information for each patient and social, religious, demographic, and educational information for each family member. RESULTS: A significant majority requested the continuation of fluid, nutrition, and medication (78%, 66%, 73%, respectively). A minority of 25%-29% requested the initiation of resuscitation, mechanical ventilation, and dialysis. Active euthanasia was requested by seven offspring. Factors that significantly affected offspring's decisions were the degree of religious observance and close relationship. Approximately 50% of offspring believed they knew their parents' wishes, but most of them did not comply with the parents' wishes. The offspring's preferences for themselves differed in important aspects from the requests for their parents. The great majority stated that a family member and/or the responsible physician should be involved in the decision-making process (76% and 79%, respectively). Only 2.0% suggested the participation of an ethics committee, and the court was rejected by all. CONCLUSIONS: Basic life-sustaining measures are requested for the terminally ill parents by most of the offspring. A significant minority even requested aggressive life-sustaining measures. The degree of religiosity and closeness of relationship influenced offspring's request most strongly.

Adult Children↗
PubMed2003

Religiosity and the challenge of terminal illness.

One of the assumptions that underpins the literature on spirituality is the belief that facing a terminal illness is a life crisis that intensifies the search for meaning, leaving individuals predisposed to embrace religion. To date, however, there is scant empirical research on the topic. This article seeks to make a contribution to this topic by reporting findings from a qualitative study that address the question of whether individuals embrace religious beliefs when faced with the challenge of a serious illness. The data were gathered from open-ended interviews with 14 hospice patients, audiotaped, transcribed verbatim, and thematically analyzed. The findings indicate the majority did not seek religious comfort or conversion as a response to the challenge of terminal illness, even when this was seen as desirable. Although participants were not actively inspired to be religious as a result of their illness, they did hold a number of spiritual perspectives that were actively at play.

Humans↗