Yvon Bureau, president of the "Responsable jusqu'à la fin" foundation, spoke at the annual congress of the Quebec section of the College of Family Physicians of Canada. A social worker, Bureau spoke as if he were a doctor and asked some important questions as to what would be his relationship to his patient. His insights can be applied to anyone who works with those who are dying or terminally ill.
Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.
This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.
The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.
The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.
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.
The care of dying patients in hospital is characterized by the copresence of four different frames: practical, medical, lay and psychological. Within the psychological frame, the staff define the patient as an experiencing subject, exposed to the staff members' knowledge and involvement. The psychological frame is used in two different circumstances. First, it is used by the staff members when the patient deviates from an expected identity within some other frame. The deviation creates a threat to the working conditions and moral order at the ward. The threat is managed through a shift into the psychological frame. Second, the psychological frame is used spontaneously in the accounts of their work given by staff members to the sociological field researcher. The image of care associated with the field researcher is characterized by a special awareness of the psychological issues. Thus the field researcher is inevitably a part of the functioning of the new kind of surveillance working through the psychological frame.
A qualitative study was conducted to obtain a deeper understanding of the hospice care of terminally ill cancer patients, where care was delivered via a primary nursing system combined with a team setting. Relatives of terminally ill cancer patients (n = 20) and the personnel (n = 8) participated in open-ended interviews. Phenomena relating to the philosophy of primary nursing and the hospice movement (continuity; closeness; accountability 24 h/day; individualized care; satisfied physical, psychological, social, and spiritual needs; and support to relatives) were experienced by the relatives, nurses, and physician as "good care." Most of the phenomena defined as important needs by the relatives and personnel were met when the primary nurse was on duty and the team was intact. Needs that were unmet were mainly a result of lack of continuity. Caring for the terminally ill via primary nursing in a team setting was regarded as two-sided by the nurses. It was seen as stimulating and rewarding, as well as demanding and burdensome. Therefore, the need for support to the nurses involved was deeply stressed.
In this article, we draw on data collected from two samples of home care nurses to examine how relationships between nurses and family caregivers intersected with access to palliative home care nursing services. Participants referred to relationships as important for their practical benefits and for access to care: good relationships enhanced the nurse's ability to assess clients and families and fostered the family's trust in the nurse's care. Although emphasizing the need to build and maintain relationships (often requiring time), participants simultaneously referred to beliefs about the need to control the personal emotions invoked in relationships so as to ensure appropriate access for clients and families. Future research should further explore how the organizational and resource context, and the culture of palliative care, shape nurses' beliefs about relationships in their practice, the nature and types of relationships that can develop, and both client and family caregivers' access to care.
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.
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.
When patients are unable to communicate their own wishes, surrogates are commonly used to aid in decision making. Although each jurisdiction has its own rules or legislation governing how surrogates are to make health care decisions, many rely on the notion of "best interests" when no prior expressed wishes are known.
We purposively sampled written decisions of the Ontario Consent and Capacity Board that focused on the best interests of patients at the end of life. Interpretive content analysis was performed independently by 2 reviewers, and themes that were identified by consensus as describing best interests were construed, as well as the characteristics of an end-of-life dispute that may be most appropriately handled by an application to the Consent and Capacity Board.
We found that many substitute decision makers rely on an appeal to religion or God in their interpretation of best interests, whereas physicians focused narrowly on the clinical condition of the patient in their interpretations.
Several lessons are drawn for the benefit of health care teams engaged in end-of-life conflicts with substitute decision makers over the best interests of patients.