Adding spontaneity to organizations - what hospice volunteers contribute to everyday life in German inpatient hospice and palliative care units: a qualitative study.

BACKGROUND: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. AIM: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? METHODS: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. RESULTS: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". CONCLUSION: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.

When dying does not go well: a qualitative study.

BACKGROUND: Several studies deal with the question of what constitutes a "satisfactory death". A smaller number of studies deal with unsatisfactory dying processes. And only a few shed light on unsatisfactory deaths that take place in hospices and palliative care units, which see themselves as places conducive to a "good" death. What also remains largely undiscussed are the ethical aspects that accompany the observation of an unsatisfactory course of death. METHOD: The research was carried out as an exploratory and qualitative study. The data collection and analysis were based on the methods of the "grounded theory". RESULTS: Notions of a bad death are articulated here, though hardly by the affected persons and their relatives themselves, but rather by the professionals. Principally, descriptions of unsatisfactory dying processes refer to deficient success in symptom control, whereby the principle of autonomy is of particular importance. The focus here is not only on the needs of patients, but also on the needs of staff. The manifestation of such notions is related to the requirements arising from a practice that apparently evokes a need for accountability in the form of communicative reassurance. CONCLUSION: An idealised definition of "dying well" is in danger of losing sight of the contextual specifics of the practice involved, which can lead to ethically problematic situations.

"Do you Really Believe that There is Something More?" - The Offer of Transcendental Communication by Pastoral Care Workers in German Hospices and Palliative Care Units: A Qualitative Study.

BACKGROUND: Palliative Care also encompasses the dimension of spiritual pain. Pastoral care workers and chaplains are specialists in the provision of spiritual care. Decreasing religious affiliation and increasing spiritual diversification in modern societies raise the question of the function of pastoral care. AIM: The goal of this study is to answer the question of what pastoral care workers can offer to dying residents in hospices and palliative care units. DESIGN: A qualitative interview study was designed to explore the specific perspective of pastoral care workers in a multidisciplinary environment. The study is based on differentiation theory which is particularly well adjusted to reveal differences in perspectives in so called 'holistic' care settings. The reporting follows the COREQ guidelines. SETTING: Problem centered interviews were conducted at five hospices and two palliative care units. RESULTS: Eight pastoral care workers were interviewed (5 Catholic, 3 Protestant, mean age of 58 years). The analysis of the interviews revealed three major themes: (A) Self-positioning in relation to the organization, (B) Offering conversations to patients and relatives, (C) Performing religious rituals. Minor themes were: mediating conflicts between patients, relatives and staff, sensing moods in silence with patients and organizing workshops for staff. CONCLUSION: In modern hospice care, pastoral care workers routinely address the problem of making death more tangible and of answering the unanswerable question of what comes afterwards. Through this, they support dying residents in hospices and palliative care units in dealing with the inexplicability of death.

Medical decision-making in hospices from the viewpoint of physicians: results from two qualitative studies.

BACKGROUND: Physicians who practice in a hospice are responsible for working with patients and nursing staff to develop a medication plan, monitor symptoms and pain, and adjust medication if necessary. In inpatient hospices in Germany, physicians are part of a multi-professional approach, but not part of the hospice team itself. However, there is no, or hardly any, literature on medical practice in a hospice setting. Therefore, we wanted to know how physicians reflect upon their role in hospice within a multi-professional setting, how they communicate with patients, relatives, nursing staff and other physicians, and what the limitations of these communication processes are. METHODS: By means of two qualitative studies we explored how physicians classify their activities as part of the hospice organization. The study design followed Grounded Theory procedures. RESULTS: The physicians named an appropriate interpretation of the patient's wishes as the challenge of everyday practice which can lead to differences of perspective with those involved: with nursing staff, who would prefer an alternative form of medication, with relatives, who do not accept that the patient refuses nutrition, with other physicians, who have a different opinion about appropriate treatment. For physicians, this is all the more challenging as communication with the patient becomes increasingly uncertain due to the patient's illness. Again and again, medical measures have to be negotiated on several levels. CONCLUSION: Multi-professional organizations that have to deal with differences in perspective handle them by clearly distinguishing areas of responsibility, an aspect that physicians also claim for themselves. For physicians the question arises repeatedly whether they have correctly interpreted the wishes of the patient. They must continuously reassure themselves of the patient's wishes and this presents them with communication challenges not only with the patient, but also with the nursing staff and relatives and, more recently, with their colleagues.

The Provision of Spiritual Care in Hospices: A Study in Four Hospices in North Rhine-Westphalia.

This article considers the role and the practices of spiritual care in hospices. While spiritual care was firmly established as one of the four pillars of practical hospice care alongside medical, psychological and social care by Cicely Saunders, the importance and functions of spiritual care in daily practice remain arguable. When speaking about spirituality, what are we actually speaking about? What form do the spiritual relations take between full-time staff and volunteers on the one hand, and the patients and their family members on the other? These were central questions of a qualitative study that we carried out in four hospices in North Rhine-Westphalia, Germany, to explore how spiritual care is provided in hospices and what significance spirituality has in hospices. The study shows that the advantages of a broader definition of spirituality lie in "spiritual care" no longer being bound to one single profession, namely that of the chaplain. It also opens the way for nurses and volunteers-irrespective of their own religious beliefs-to provide spiritual end-of-life care to patients in hospices. If the hospice nurses and volunteers were able to mitigate the patients' fear not only by using medications but also in a psychosocial or spiritual respect, then they saw this as a successful psychological and spiritual guidance. The spiritual guidance is to some degree independent of religious belief because it refers to a "spirit" or "inner core" of human beings. But this guidance needs assistance from professional knowledge considering religious rituals if the patients are deeply rooted in a (non-Christian) religion. Here, the lack of knowledge could be eliminated by further education as an essential but not sufficient condition.

How to justify a ban on doping?

BACKGROUND: This article deals with arguments that challenge the possibility of an ethical justification for a doping ban. HYPOTHESIS/PURPOSE: It shows that a justification for the doping ban is only possible if its implementation can be safeguarded. STUDY DESIGN: Systematic review. METHODS: Based on the proposition of the game theory, this article examines the scope of the arguments of naturalness, health, equal opportunity and fairness used in scientific literature. RESULTS/CONCLUSIONS: Ceteris paribus, athletes will always prefer a situation that presents no health risk to a situation in which they face a threat to their health. They will therefore consent to a doping ban on the condition that it is ensured that all parties are bound to this rule, so that anyone complying with the rules will not be afraid of losing the competition as a result. For even if we condoned self-harm, it could still be argued plausibly that the individual should not suffer more disadvantages than absolutely necessary for the sake of gaining an advantage over others. Of course, it is possible to plead for a restricted approval of doping measures with acceptable risk. But even taking minor risks would not seem sensible under the condition that all participants without exception adhere to the same conditions when there is the option to renounce the (avoidable) risks. So as far as the use of performance-enhancing substances or methods is concerned, we can maintain that even if minor health risks are to be expected, a ban on doping can be justified from an ethical point of view.

Ethical decision-making in hospice care.

BACKGROUND: Hospices are based on a holistic approach which places the physical, psychological, social and spiritual welfare of their patients at the forefront of their work. Furthermore, they draw up their own mission statements which they are at pains to follow and seek to conduct their work in accordance with codes of ethics and standards of care. RESEARCH QUESTION AND DESIGN: Our study researched what form the processes and degrees of latitude in decision-making take in practice when questions of an ethical and ethically relevant nature arise. We used a qualitative approach. Data collection and evaluation was based on the methods of grounded theory. ETHICAL CONSIDERATIONS: The study was reported to the relevant Ethics Commission who had raised no objections following the submission of the study protocol. The study at the hospices was approved by the directors of the hospices and the nursing teams. The rights of the participants were protected by obtaining informed consent. RESULTS: Medication in the prefinal phase and questions affecting the provision of solids and liquids in the end-of-life phase have an ethical dimension. In the context of these two fields, decisions are taken collectively. A nurse's individual (and ethically relevant) leeway in decision-making processes is restricted to the nurse's own style of administering care. The nurse's decision-making often depends to a far greater degree on her ability to adapt her concept of ideal care to fit the practical realities of her work than to any conceptual framework. DISCUSSION: An adaptive process is necessary for the nurse because she is required to incorporate the four pillars of hospice care - namely, physical, psychological, social and spiritual care - into the practice of her daily work. CONCLUSION: Ethically relevant decisions are often characterised by nurses adjusting their aspiration levels to the practical conditions with which they are confronted.

Conflicts and conflict regulation in hospices: nurses' perspectives. Results of a qualitative study in three German hospices.

The present article considers conflicts and conflict regulation in hospices. The authors carried out a qualitative study in three hospices in North Rhine-Westphalia, Germany, to explore how conflicts arise and how conflict regulation proceeds. Hospice nurses should act according to a set of ethical codes, to mission statements of the institution and to professional standards of care. In practice the subjective interpretations of codes and/or models concerning questions of care are causes of conflicts among nurses, with doctors, patients and family members. The management has two choices to react to these conflicts. It can either tolerate the conflicts, as long as they do not disturb the daily routine. Or it can increase the degree of organisation by integrating the different viewpoints into its own program and/or by restructuring its organisational units.

Morality and moral conflicts in hospice care: results of a qualitative interview study.

Hospices consider themselves places that practise a holistic form of terminal care, encompassing physical and psychological symptoms, and also the social and spiritual support for a dying patient. So far, the underlying ethical principles have been treated predominantly in terms of a normative theoretical discussion. The interview study discussed in this paper is a qualitative investigation into general and hospice-related conceptions of morality among full-time and voluntary workers in German inpatient hospices. It examines moral conflicts and efforts leading to their solution. The main ideas identified include moral neutrality towards the patients and their requests, the capability of acceptance, the idea of self-restraint with respect to the dying patient and the principle of respect for the natural course of dying. Essential triggers for moral conflicts were the inadequate education of patients, problems of acceptance in view of incurable disease, and disagreements between members of patients' families. The interviewees expressed their scepticism towards formal institutions of ethical counselling. The study has shown a type of virtue ethics that forms an integral part of the overall concept of hospice care, which cannot be treated separately from a holistic idea of care at the end of life.

Medical decision-making and communication of risks: an ethical perspective.

The medical decision-making process is currently in flux. Decisions are no longer made entirely at the physician's discretion: patients are becoming more and more involved in the process. There is a great deal of discussion about the ideal of 'informed consent', that is that diagnostic and therapeutic decisions should be made based on an interaction between physician and patient. This means that patients are informed about the advantages and disadvantages of a treatment as well as alternatives to the treatment; then, based on this information they can decide whether or not they want to undergo the treatment. However, recent studies show that the realisation of the ideal of 'shared decision-making' faces a number of difficulties related to the fact that patients are not provided with complete and accurate information. Using the example of breast cancer screening, this article examines the question of whether, in light of these difficulties, the ideal of informed decision-making is only an illusion or whether concrete steps can be taken towards the realisation of this ideal.