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PubMed1998

Caring for terminally ill persons: comparative analysis of attitudes (thanatophobia) of practicing physicians, student nurses, and medical students.

To investigate why some caregivers desire to avoid patients with terminal illnesses, a thanatophobia scale assessing caregivers' uncomfortable feelings and sense of helplessness was developed and evaluated among practicing physicians and student nurses and medical students. As a group, student nurses scored lower on the thanatophobia scale than practicing physicians and medical students. Higher scores on intolerance to clinical uncertainty were associated with higher thanatophobia scores in all groups. Scores for depressed mood, decreased sensitivity, and Machiavellianism were statistically significant predictors in some groups. Higher thanatophobia scores also predicted lower scores for ratings of self-esteem in caring for elderly patients. Among senior medical students, those with lower thanatophobia scores tended to enter primary care residencies. Health professional educators may find this scale helpful both in pinpointing sources of caregivers' angst and useful in counseling students in management of terminally ill persons.

Adult↗
PubMed1996

The role of the primary care physician in the care of the terminally ill.

The primary care physician is often the provider best situated and suited to deal with all aspects of the care and management of the elderly patient with a terminal illness. Despite the many barriers physicians face (the most significant of which are inadequate training and poor reimbursement), providing quality care for the terminally ill is a critically important task. As Angell editorialized in 1982 about pain management, "the quality of mercy is essential to the practice of medicine. Here, of all places, it must not be strained."

Aged↗
PubMed1990

Fostering hope in terminally-ill people.

This study explored the meaning of hope and identified strategies that are used to foster hope in a convenience sample of 30 terminally-ill adults using the technique of methodological triangulation (interview, Herth Hope Index and Background Data Form). Cross-sectional data were collected on 20 of the subjects, and longitudinal data were collected on 10 of the subjects in order to provide a clearer understanding of the hoping process during the dying trajectory. Hope was defined as an inner power directed toward enrichment of 'being'. With the exception of those diagnosed with AIDS, overall hope levels among subjects were high and were found to remain stable over time and across the background variables. Seven hope-fostering categories and three hope-hindering categories were identified based on the interview responses. The findings could serve as a guide for the development of interventions to foster hope in terminally-ill people.

Adaptation, Psychological↗
PubMed1996

A randomized controlled trial of the cost-effectiveness of a district co-ordinating service for terminally ill cancer patients.

The objective of this paper is to compare the cost effectiveness of a co-ordination service with standard services for terminally ill cancer patients with a prognosis of less than one year. We designed a randomized controlled trial, with patients randomized by the general practice with which they were registered. Co-ordination group patients received the assistance of two nurse coordinators whose role was to ensure that patients had access to appropriate services. The setting was in a South London health authority. Complete service use and outcome data were collected on 167 patients, 86 in the co-ordination group, and 81 in the control group. Our results, as previously reported, show that no differences in outcomes were detected between the co-ordination and control groups; the mean total costs incurred by the co-ordination group were significantly less than those of the control group. The co-ordinated group used significantly fewer inpatient days (mean 24 versus 40 inpatient days; t = 2.4, p = 0.002) and nurse home visits (mean 14.5 versus 37.5 visits; t = 0.3, p = 0.01). Mean cost per co-ordinated patient was almost half that of the control group patients 4774 pounds versus 8034 pounds, t = 2.8, p = 0.006). Although the unit cost data were relatively crude, these cost reductions were insensitive to a wide range of unit costs. These differences persisted when, in order to control for any putative differences in severity between the two groups, the analysis was restricted to patients who had died by the end of the study. The ratio of potential cost savings to the cost of co-ordination service was between 4:1 and 8:1. In conclusion, the co-ordination service for cancer patients who were terminally ill with a prognosis of less than one year was more cost effective than standard services, due to achieving the same outcomes at lower service use, particularly inpatient days in acute hospital. Assuming that the observed effects are real, improved co-ordination of palliative care offers the potential for considerable savings. Further research is needed to explore this issue.

Adolescent↗
PubMed1999

Successful validation of the palliative prognostic score in terminally ill cancer patients. Italian Multicenter Study Group on Palliative Care.

The aim of this work was to validate a previously constructed prognostic score for terminally ill cancer patients in order to determine its value in clinical practice. The Palliative Prognostic Score (PaP Score) was tested on a population of 451 evaluable patients consecutively entered in the hospice programs of 14 Italian Palliative Care Centers. The score subdivided patients into three specific risk classes based on the following six predictive factors of death: dyspnea, anorexia, Karnofsky Performance Status (KPS), Clinical Prediction of Survival (CPS), total white blood count (WBC), and lymphocyte percentage. The performance of the PaP Score index in the training and testing sets was evaluated by comparing mortality rates in the 3 prognostic risk categories. The score was able to subdivide the validation-independent case series into three risk groups. Median survival was 76 days in group A (with a 86.6% probability of 30-day survival), 32 days in group B (with a 51.6% probability of 30-day survival), and 14 days in group C (with a 16.9% probability of 30-day survival). Survival medians were remarkably similar to those of the training set (64 days in group A, 32 days in group B, and 11 days in group C). In the complex process of staging terminally ill patients, the PaP Score is a simple instrument which permits a more accurate quantification of expected survival. It has been validated on an independent case series and is thus suitable for use in clinical practice.

Algorithms↗
PubMed2004

Desire for death and requests to hasten death of Japanese terminally ill cancer patients receiving specialized inpatient palliative care.

A desire for death and requests to hasten death are major topics in recent medical literature. The aim of this study was to clarify the bereaved family-reported incidence and reasons for desiring death and requests to hasten death during the whole course of terminally ill cancer patients receiving specialized palliative care in Japan. A nationwide questionnaire survey of 500 primary caregivers yielded a total of 290 responses (effective response rate, 62%). Sixty-two (21%) families reported that the patients had expressed a desire to die, and 29 (10%) families reported that the patients had requested that death be hastened. The major reasons for desiring death and requests to hasten death were: burden on others, dependency, meaninglessness, unable to pursue pleasurable activities, general malaise, pain, dyspnea, concerns about future distress, and wish to control the time of death. No intolerable physical symptoms were reported in 32% and 28% of the patients who desired death and those who requested to hasten death, respectively. Concerns about future distress and wishes to control the time of death were significantly more likely to be listed as major reasons for desiring death in patients who requested that death be hastened than those who did not. A desire for death and requests to hasten death are not uncommon in terminally ill cancer patients receiving specialized inpatient palliative care in Japan. More intensive strategies for general malaise, pain, and dyspnea near the end of life, and for feelings of being a burden, meaninglessness, and concerns about future distress would alleviate the serious suffering of patients with a desire for death. However, some patients with a strong wish to control the time of death might not receive benefit from conventional palliative care.

Adult↗
PubMed1978

Management of constipation in terminally ill patients.

This small study was carried out to assess the effectiveness of lactulose syrup (Duphalac) in the management of constipation in forty-six patients with terminal illnesses. The daily dose of lactulose was titrated to meet the individual patients requirements and was found to be in the region of 20 to 30 mls twice daily, despite the almost universal administration of opiates as analgesics. The study lasted 21 days in each patient capable of completing the assessment. Constipation was relieved within a an average of 3 to 4 days, and of the 512 days observed, there were 203 days in which a bowel movement occurred. Of these motions 71% were recorded as easy to move, rather than hard (21%) of loose (8%). Faecal incontinence and nausea attributable to lactulose treatment were extremely rare. Therefore, lactulose appeared to be a useful treatment for constipation in the terminally ill patient.

Adult↗
PubMed1991

Anorexia in the terminally ill cancer patient: the emotional impact on the patient and the family.

Anorexia is a troublesome symptom, experienced by the majority of cancer patients. Loss of appetite in the terminally ill patient is seen as a certain sign of impending death and is a source of considerable anxiety. This study was designed to explore the ways in which terminally ill cancer patients and their primary caregivers view and respond to the patient's loss of appetite. Semi-structured interviews were conducted to elicit data. Findings suggest that loss of appetite is indeed a source of anxiety and conflict within the family, and that the amount of food and fluid taken is used as a barometer of the patient's overall condition. Findings also suggest that caregiver anxiety is more pronounced in the female than in the male because the patient's inability to eat impacts upon her customary role identity. The majority of patients viewed anorexia to be of less concern than other problems, and also voiced a preference to have their family members focus less energy on encouraging them to eat.

Adaptation, Psychological↗
PubMed2006

Predictors of the extent of agreement for quality of life assessments between terminally ill cancer patients and their primary family caregivers in Taiwan.

The use of family caregivers to report patients' dying experiences has been suggested as a way of resolving the problem of non-response bias and missing data in end-of-life research. There is a dearth of information in the literature about the predictors of the extent of agreement for quality of life (QOL) assessments between patients and family informants outside of Western countries. In addition, to date there has been little progress made in deciphering meaningful influencing factors on the levels of agreement between patient and family QOL assessments. The purpose of this study was to identify the impact of the demographics and disease characteristics of patients and families, relationships of the patient to family caregiver, and caregiving burden on the extent of agreement for QOL assessments between Taiwanese terminally ill cancer patients and their family caregivers. Results from assessments by 114 dyads of Taiwanese terminally ill cancer patients and their family caregivers indicated that the extent of agreement between patient and family assessments of patient QOL was negatively influenced by the caregiving burden (amount of care needed and the impact of caregiving on caregiver's health), positively influenced by the patient's poorer health status, and there were a mixed effect of the demographics and the relationship between the patient and the family. Providing clinical care tailored at empowering families and aimed at reducing their unmet caregiving needs may improve family caregivers' abilities to assess patient QOL sensitively.

Adult↗
PubMed1996

Dehydration among terminally ill patients: an integrated ethical and practical approach for caregivers.

The purpose of this paper is to examine the possibilities and limitations of an ethical and practical approach to terminal dehydration. We have argued that dehydration among terminally ill patients offers an important key to a better understanding of the dying process, and that the caregivers' reactions can lead to a deepening of holistic palliative care. This article makes clear that the moral question of terminal dehydration can only be treated by an interdisciplinary approach. Therefore, before studying the question of the most humane course possible, we must first understand the meaning of dehydration and its repercussions for the dying patient. Inspired by an attitude of respect for a good dying process, we have suggested that it is possible to put forward as a general guideline that medical therapy should be progressively reduced when it has been determined that a patient has reached the terminal stage, or is in an irreversible deteriorating process. We describe the critical somatic, social, psychological, moral and spiritual points, which make up an ethical approach to terminal dehydration (TD). In the total care of the irreversibly terminally ill patient, tolerating TD can be an expression of an authentic and caring involvement in the dying patient's welfare.

Attitude of Health Personnel↗
PubMed2004

Judgments of laypersons and general practitioners on justifiability and legality of providing assistance to die to a terminally ill patient: a view from New Zealand.

As part of a larger study, four decisions related to a vignette scenario of the elective death of a terminally ill patient suffering intractable pain are examined (doctor supplying information and drugs, assisting patient to take the drugs, or administering a lethal injection). Judgments on justifiability and legality of actions were obtained from laypersons and general practitioners (GPs) in Auckland, New Zealand. The results show that over 72% of laypersons and over 30% of GPs judged all four actions justified. Despite illegality a significant number of laypersons and some doctors were unsure of the legal status of actions. The current law in New Zealand prohibiting physician-assisted death may not reflect judgments by the majority of laypersons or 30% of general practitioners on the justifiability of elective death options for a terminally ill patient with intractable pain. Judgments on justifiability may be related to confusion over the legality of actions.

Adolescent↗
PubMed2005

Effects of parenteral hydration in terminally ill cancer patients: a preliminary study.

PURPOSE: Most patients with cancer develop decreased oral intake and dehydration before death. This study aimed to determine the effect of parenteral hydration on overall symptom control in terminally ill cancer patients with dehydration. PATIENTS AND METHODS: Patients with clinical evidence of mild to moderate dehydration and a liquid oral intake less than 1,000 mL/day were randomly assigned to receive either parenteral hydration with 1,000 mL (treatment group) or placebo with 100 mL normal saline administered over 4 hours for 2 days. Patients were evaluated for target symptoms (hallucinations, myoclonus, fatigue, and sedation), global well-being, and overall benefit. RESULTS: Twenty-seven patients randomly assigned to the treatment group had improvement in 53 (73%) of their 73 target symptoms versus 33 (49%) of 67 target symptoms in the placebo group (n=22; P = .005). Fifteen (83%) of 18 and 15 (83%) of 18 patients had improved myoclonus and sedation after hydration versus eight (47%) of 17 and five (33%) of 15 patients after placebo (P = .035 and P = .005, respectively). There were no significant differences of improvement in hallucinations or fatigue between groups. When blinded to treatment, patients (17 [63%] of 77) and investigators (20 [74%] of 27) perceived hydration as effective compared with placebo in nine (41%) of 22 patients (P = .78) and 12 (54%) of 22 investigators (P = .15), respectively. The intensity of pain and swelling at the injection site were not significantly different between groups. CONCLUSION: Parenteral hydration decreased symptoms of dehydration in terminally ill cancer patients who had decreased fluid intake. Hydration was well tolerated, and a placebo effect was observed. Studies with larger samples and a longer follow-up period are justified.

Adult↗
PubMed1989

The bridge beyond: strengthening nursing practice in attitudes towards death, dying, and the terminally ill, and helping the spouses of critically ill patients.

Death and dying are often surrounded by a conspiracy of silence. Usually it is an unconsciously organised silence, leaving those whose lives are threatened by terminal illness or an accelerated death with a physiological insult and without much-needed communication. The silence seems self-protecting for relatives, medical and nursing staff. Silence is a false reassurance and offers no emotional growth or understanding of the events which surround death in its finality. People who fear death of a close family member often begin the process of grieving their loss before actual loss occurs, and can remain locked in grief for years unless helped by the right communication. According to Hampe (1975) this phenomenon is known as 'anticipating grief' or grieving. If medical staff and nurses are to feel confident in anything to do with death and dying, or to feel comfortable in dealing with terminal illness, they should have some understanding of death itself. They should also feel confident in opening up and maintaining an effective dialogue. This requires training in the relevant interviewing, assessment and counselling skills (Maguire, 1985). A systematic approach is necessary to provide good care for the spouses of critically ill patients, who may suffer anticipatory grief. Excerpts from a very helpful paper by Breu (1982) and an adapted care plan are included (with permission) at the end of this paper.

Attitude of Health Personnel↗
PubMed2002

Terminally ill patients and Jehovah's Witnesses: teaching acceptance of patients' refusals of vital treatments.

OBJECTIVES: To find out whether and how the teaching of medical ethics can influence attitudes on accepting treatment refusals. SETTING AND DESIGN: Anonymous questionnaires were distributed to 4 groups of students at the University of Geneva who had participated (P) or not (nP) in teaching modules on medical law and ethics. One vignette described a terminally ill patient refusing mechanical ventilation, another a Jehovah's Witness refusing a life-saving blood transfusion. PARTICIPANTS: 127 medical and 168 law students. MAIN OUTCOME MEASURES: 5-point Likert scale of responses to the vignettes reaching from certain acceptance to certain non-acceptance of the treatment refusal. RESULTS: More than 80% of law students (nP) said that a good physician should accept the terminally ill patient's refusal. 84% (P) compared to 68% (nP) of medical students (P=0.03) would accept this refusal. The acceptance of the Jehovah's Witness refusal of a life-saving transfusion was less among all students. Students from the groups (P) reported significantly more often (P < 0.001) that they would accept (76% of medical students) or that a good physician should accept (63% of law students) the treatment refusal of the Jehovah's Witness than medical students (48%) and law students (27%) from the two other groups (nP). CONCLUSION: (P) students showed significantly more acceptance of treatment refusals in the hypothetical case scenarios than (nP) students from the same faculty. Religion, cultural origin and school education of the parents had less influence on attitudes than participation in ethical teaching and type of student (medicine vs. law).

Adult↗
PubMed1999

Abandonment of terminally ill patients in the Byzantine era. An ancient tradition?

Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content.

Byzantium↗
PubMedDate not supplied

[Ethical and clinical decisions on artificial hydration and feeding via tube in the terminally ill].

Tube feeding is a widely used medical treatment for providing nutrition to terminally ill patients. Long term nutritional support in these patients or patients with irreversible neurological deterioration create a host of ethical and legal conflicts with difficult solutions. This work looks at the cultural and ethical-legal basis of these decisions and gives simple suggestions that might help the health care provider in making a viable clinical decision. However, each case should be treated in an individualized manner taking into consideration the rights and desires of each patient and their families.

Cognition Disorders↗
PubMed1998

Sentinel practices in evaluating longer periods of care: quality of life and drug therapy of terminally ill persons in Lower Saxony (Germany).

STUDY OBJECTIVES: (1) To study the feasibility of using sentinel practice networks to evaluate longer periods of care. (2) To assess the quality of life and drug therapy of community dwelling terminally ill persons. DESIGN: Prospective longitudinal design with GPs in an existing sentinel practice network identifying "terminally ill" persons and recording the following data: age, sex, diagnoses, and ongoing drug therapy initially, time, place, duration, services, and drug changes for every contact, quality of life (HRCA-QL Index, Spitzer Index, uniscale), pain intensity and frequency on a weekly basis, and time and circumstances of death. SETTING: 26 GP practices in Lower Saxony, Germany. PATIENTS: 47 patients (age: mean 76 years, range 31 to 98; sex: 21 male, 26 female; diagnosis: 35 with cancer) with 582 contacts. Mean of recorded time before death was 70 days (median 50). MAIN RESULTS: Average number of physician-patient contacts increased from 0.7 a week three months before death to 2.4 in the final week. Quality of life decreased during that period (HRCA-QL Index: 5.1 to 0.8; Spitzer: 4.4 to 0.8; uniscale: 37 to 9). In the last week of life, no person was free of pain; analgetic therapy was "successful" in 57% of cases. CONCLUSIONS: (1) The sentinel practice approach is feasible for evaluating longer periods of care. The generalisibility, however, may be limited to certain subgroups. (2) The observed trends in quality of life, pain, and analgetic treatment should be compared with those in other settings and countries to identify the scope of care improvement.

Adult↗