BACKGROUND: Advanced medical care in the patient's home setting is becoming more common. Many of the patients who receive this kind of care have severe illnesses and are unable to respond to questions about the quality of care. The research question was: are the patients' opinions congruent with those of family members? AIM: To explore and compare the relationship between patients' perception of the quality of care and close family members' perception of this care as well as their perception of the patients' perception. METHODS: Sixty-seven patients receiving advanced home care, 82 family members (54 matched patient + family member pairs) participated. Data were collected using a short version of the quality from the patient's perspective questionnaire modified to advanced home care. RESULTS: A high degree of perceptual congruence was found between patients and their family members. The similarity was also high between family members' own opinion and their appraisal of how the patient perceived the care. A subgroup of family members who met the patient once a week or less often deviated from this pattern. CONCLUSION: Patients' views on the quality of care are congruent with the opinions of family members if they meet every day (live together) and share the same everyday and care-related experiences. The results can be understood in the light of empathic accuracy theory. RELEVANCE TO CLINICAL PRACTICE: The findings of this study have important implications for clinical nursing practice. Family members' perception of the quality of care may be a valuable data source for nurses in the case of advanced home care if the patient and family member share the same everyday, care-related experiences, otherwise family members' perception tend to be more critical than those of the patients themselves.
Palliative care is a uniquely demanding field in that clinicians routinely address the complex needs of patients living with incurable illness. Due to their relative inexperience, medical learners completing a palliative care educational experience are particularly vulnerable to the stresses that are often encountered. To address this educational need, a structured Self-Care Module was developed for medical learners rotating through a palliative care clinical rotation. Components of this module include completion of a process recording exercise, a structured reflection, and participation in a facilitated group discussion. An examination of the acceptability, utility, and operational feasibility of the module demonstrated that 86% (n=35) of learners found the module helpful in reflecting on their clinical encounters, 86% (n=35) gained an appreciation for the importance of self-reflection and self-awareness as a component of self-care and 97% (n=35) gained a greater appreciation for sharing clinical experiences with other learners. This novel Self-Care Module was found to be a well accepted, useful, and operationally feasible educational experience for postgraduate and undergraduate learners completing a palliative care educational experience.
A Swedish widowhood study revealed that four out of ten widows regarded the pre-loss period more stressful than the post-loss. The present investigation of close relatives to patients dying from cancer (using interviews and the Anticipatory Grief Scale) found that preparatory grief involves much emotional stress, as intense preoccupation with the dying, longing for his/her former personality, loneliness, tearfulness, cognitive dysfunction, irritability, anger and social withdrawal, and a need to talk. Psychological status was bad one by every fifth. However, the relatives mostly stated adjustment and ability to mobilize strength to cope with the situation. The results suggest development of support and guiding programs also for the anticipatory period.
Patients who have chosen to have treatment withdrawn because of debilitating conditions pose a special problem for palliative care. We report on two such patients: patient 1 refused amputation of a gangrenous leg and patient 2 refused food and hydration after a series of strokes. The management of these patients through the dying process is discussed and guidelines are suggested. The criteria for competency include both a general cognitive and psychiatric assessment as well as a specific evaluation of the patient's ability to make the treatment withdrawal decision. Treatable symptoms which impair the patient's quality of life and have an impact on the decision should be corrected. If a proxy decides to withdraw therapy in an incompetent patient, this decision should accord with the patient's known wishes and values as far as possible. The beneficence of the decision may be assessed according to the disease process, degree of suffering, and risks of accepting treatment. The complexity of these cases calls for a multidisciplinary approach, and the palliative care team should work in collaboration with the primary care treatment team.
The aim of this study was to survey Canadian oncology practitioners' attitudes toward psychosocial concerns and issues in women with breast cancer. Surveys were mailed to 351 medical, radiation and surgical oncologists and 375 oncology nurses. Standard questionnaires assessed attitudes towards psychosocial issues in women with primary and metastatic breast cancer and evaluated the practitioners' willingness to refer women to psychosocial intervention trials in the presence and absence of competing drug trials. Responses were obtained from 74% of those surveyed. Respondents reported being aware of the common occurrence of psychosocial problems in women with metastatic breast cancer, however, physicians were less likely than nurses to offer these women psychosocial support on a prophylactic basis (p
BACKGROUND: The WHO definitions of palliative care have been adopted in Denmark and implemented in The National Guidelines from 1999, but service developments have been very slow and not according to the recommendations. Attitudes to palliative care of Danish doctors and nurses may in part account for this. OBJECTIVE: To assess the attitudes to issues related to palliative care of doctors and nurses in a Danish county hospital and the related primary care services. DESIGN: Cross-sectional survey using a mailed, self-administered questionnaire answered anonymously. PARTICIPANTS: Nurses and doctors employed in a county hospital in Denmark, homecare nurses and general practitioners from the related primary care services. OUTCOME MEASURES: The responses from the groups were compared by chi2 statistics (where ordinal variables with chi2 for trend). Data were analysed using SPSS 10.0. RESULTS: 347 responded, response rate 76%. Eighty-one per cent of all respondents were currently caring for terminally ill patient(s), 94% had done so within the last six months. Hospital doctors see more terminally ill patients than GPs (P = 0.002). Comparison of doctors (both hospital and GPs) with nurses showed that nurses were more likely to definitely agree that palliative/terminal care was a rewarding part of their work (61% 'definitely agree' versus 30%), and they were less likely to prefer to leave care of these patients to others (4% 'definitely/probably agree' versus 9%). Nurses reflected more on existential matters (80% 'definitely/probably agree' versus 63%) and were more likely to agree that dealing with a dying patient made them aware of their own feelings regarding death (97% 'definitely/probably agree' versus 80%). Only 7% of all respondents reported 'being an active member of a religious community'. Ninety-two per cent of all respondents agreed that doctors play a key role in reducing the suffering of dying patients, but 59% of nurses versus 9% of doctors 'definitely/probably agree' that 'it is primarily the task of nurses to deal with patients reactions to death'. There were significant differences between hospital doctors and GPs, with the former less likely to agree that palliative and terminal illness is rewarding, more likely to leave care of dying patients to others, and more likely to 'probably' or 'definitely agree' that it is more satisfying to work with patients who will improve. Home care nurses reflected more on existential matters than their hospital colleagues, and were more likely to 'definitely agree' that palliative/terminal care is rewarding. Differences between groups seemed to be due to profession (doctor versus nurse) and setting (hospital versus community) rather than age or gender. CONCLUSION: These findings suggest that in Denmark nurses demonstrate more positive attitudes to the care of palliative/terminally ill patients than doctors, and that attitudes amongst doctors and nurses working in the community are more positive than those of the colleagues in hospitals. There is currently little education in the principles and practice of palliative care in Denmark. These findings will inform the development of appropriate palliative care education for doctors and nurses working both in the hospital and in the community in Denmark. They also raise the possibility that part of the inertia in the development of palliative care in Denmark is related to the lack of education and, in particular, to the need of support for doctors and nurses providing terminal care so they are enabled to be more reflective on the care they currently provide. There is evidence that education in palliative care can change health professionals' attitudes to palliative and terminal care, and this now needs to be investigated in Denmark.
Attitudes toward euthanasia differ between individuals and populations, and in many studies the medical profession is more reluctant than the general public. Our goal was to explore medical students' attitude toward euthanasia. A questionnaire containing open-ended questions was answered anonymously by 165 first- and fifth-year medical students. Data were analysed using qualitative content analysis with no predetermined categories. The students' arguments opposing euthanasia were based on opinions of 1. euthanasia being morally wrong, 2. fear of possible negative effects on society, 3. euthanasia causing strain on physicians and 4. doubts about the true meaning of requests of euthanasia from patients. Arguments supporting euthanasia were based on 1. patients' autonomy and 2. the relief of suffering, which could be caused by severe illnesses, reduced integrity, hopelessness, social factors and old age. There are several contradictions in the students' arguments and the results indicate a possible need for education focusing on the possibility of symptom control in palliative care and patients' perceived quality of life.
BACKGROUND: Most studies on attitudes towards euthanasia and physician-assisted suicide (PAS) have been conducted in healthy populations. The aim of this study is to explore and describe attitudes towards, and wishes for, euthanasia/PAS in cancer patients with short life expectancy. METHOD: Semi-structured interviews with 18 cancer patients with a life expectancy of less than nine months. All patients were recruited from an inpatient palliative medicine unit. RESULTS: Patients holding a positive attitude towards euthanasia/PAS do not necessarily want euthanasia/PAS for themselves. Wishes are different from requests for euthanasia/PAS. Fear of future pain and a painful death were the main reasons given for a possible wish for euthanasia/PAS. Worries about minimal quality of life and lack of hope also contributed to such thoughts. Wishes for euthanasia/PAS were hypothetical; they were future oriented and with a prerequisite that intense pain, lack of quality of life and/or hope had to be present. Additionally, wishes were fluctuating and ambivalent. CONCLUSION: The wish to die in these patients does not seem to be constant. Rather, this wish is more appropriately seen as an ambivalent and fluctuating mental 'solution' for the future. Health care providers should be aware of this when responding to utterances regarding euthanasia/PAS.
In this grounded theory study, the authors interviewed caregivers and patients in end-of-life cancer care and found Balancing to be a fundamental process explaining the problem-solving strategies of most participants and offering a comprehensive perspective on both health care in general and end-of-life cancer care in particular. Balancing stages were Weighing--sensing needs and wishes signaled by patients, gauging them against caregiver resources in diagnosing and care planning; Shifting--breaking bad news, changing care places, and treatments; and Compensating--controlling symptoms, educating and team-working, prioritizing and "stretching" time, innovating care methods, improvising, and maintaining the homeostasis of hope. The Balancing outcome is characterized by Compromising, or "Walking a fine line," at best an optimized situation, at worst a deceit.
The aim of this study was to illuminate the way of being a family when one family member is in the midst of living and dying. A family systems frame and a life world perspective were used in interviews with five families. A qualitative analysis inspired by Giorgi revealed dialectic and dynamic processes in constant motion within and between the continua being in affinity-being in loneliness, being in power-being in helplessness, and being in continuity-being in disruption. When families were moving in the direction of being in affinity, power, and continuity, these seemed to be prerequisites for enduring their challenged life situation and for giving them a kind of repose. When the movements were in the opposite direction, existential and emotional suffering were manifested as individual embodied experiences such as depression and anxiety.