Biomedical subjects

Guy Widdershoven

Publications and source records attributed to Guy Widdershoven.

8 recordsLinked to original sources

PubMed2006

What is a good death? Terminally ill patients dealing with normative expectations around death and dying.

OBJECTIVE: Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a 'good' death. METHOD: Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework. RESULTS: Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions. CONCLUSIONS: The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm. PRACTICE IMPLICATIONS: Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an 'appropriate death'.

Adaptation, Psychological↗

PubMed2006

Quality of life in palliative care cancer patients: a literature review.

AIMS AND OBJECTIVES: [corrected] This review of the literature intended to get insight into the international standards of quality of life assessment in palliative care, the conceptual and research literature addressing illness related quality of life and an examination of how nurse researchers define and assess this concept in the context of terminally ill cancer patients. Clearly stated goals for measuring quality of life as well as an understanding of the pragmatic and theoretical explanations for current trends in quality of life measurement are fundamental to this focus. BACKGROUND: Most clinicians and researchers agree that the primary goal of palliative care is to optimize the quality of life of patients with advanced incurable diseases through control of physical symptoms and attention to the patient's psychological, social and spiritual needs. Palliative care therefore is the achievement of the best quality of life for patients and their families. Consequently, the outcomes of care should be measured in terms of the extent to which this goal is achieved. Quality of life is difficult to define and measure; it is a multidimensional, dynamic and subjective concept. During the past decade, multidisciplinary research measuring the impact of cancer and its treatment on the quality of people's lives escalated rapidly in international literature but not in the German speaking European countries. This international escalation was accompanied by a proliferation of measurement strategies and tools. Nursing shared this interest and began to generate substantive research of the phenomenon. In the oncology and palliative care nursing societies quality of life and numerous closely related areas of symptom management rank among the highest research priorities. METHOD: This paper examines nursing literature published between 1990 and 2004, retrieved through a computer review of MEDLINE and Cumulative Index of Nursing and Allied Health Literature. The review includes reports that systematically describe or measure the quality of life of people with a terminal cancer in palliative care as a variable of interest. This article also describes conceptual and operational definitions of quality of life and explores the implicit and explicit goals of research. RESULTS: Quality of life is a concept relevant to the discipline of nursing. Nurses, especially oncology and palliative care nurses, actively contributed to the development of the quality of life concept through instrument development and population description. CONCLUSION: Nurses working in German palliative care settings do change the quality of life of patients they care for, but there are no systematic standards of assessing these outcomes. RELEVANCE TO CLINICAL PRACTICE: There are challenges related to measuring quality of life in patient-focused palliative care and research. Systematic quality of life assessment in all palliative care settings will establish quality assurance and the further development of this very young discipline in Germany.

Attitude to Death↗

PubMed2005

Competency in shaping one's life: autonomy of people with type 2 diabetes mellitus in a nurse-led, shared-care setting; a qualitative study.

BACKGROUND: In the Netherlands diabetes specialist nurses play an important role in specialized, long-term care for the chronically ill. One of the goals of nurse-led, shared care is to encourage chronically ill people to participate actively in selecting the organisation and interventions of care. This paper reports the findings of a study to determine which concepts of autonomy people with type 2 diabetes use in a nurse-led, shared-care setting. OBJECTIVES: The aim of this article was to portray how people with type 2 diabetes mellitus who are being cared for by diabetes specialist nurses in a shared-care unit view autonomy. DESIGN AND SETTING: This qualitative study used in-depth interviews and was carried out in a nurse-led, shared-care unit in the Netherlands. PARTICIPANTS: The study population consisted of 15 people who were enrolled for at least 1 year at the nurse-led, shared-care unit and who lived independently at home. METHOD: Data were analysed with a grounded-theory-like method. RESULT: The core category, 'competency in shaping one's life', described how people with diabetes exercise their autonomy. Seven categories that emerged were considered dimensions of autonomy. The dimensions were: identification, self-management, welcomed paternalism, self-determination, shared decision-making, planned surveillance, and responsive relationship. CONCLUSION: Autonomy is a multi-dimensional, dynamic and complex construct. Further research is needed to investigate which decision-making processes patients with type 2 diabetes use in a nurse-led, shared-care setting.

Aftercare↗

PubMed2004

Competence in mental health care: a hermeneutic perspective.

In this paper we develop a hermeneutic approach to the concept of competence. Patient competence, according to a hermeneutic approach, is not primarily a matter of being able to reason, but of being able to interpret the world and respond to it. Capacity should then not be seen as theoretical, but as practical. From the perspective of practical rationality, competence and capacity are two sides of the same coin. If a person has the capacity to understand the world and give meaning to the situation, he or she is able to make decisions, and is thus competent. People can fail in the area of practical rationality. They can feel ill at ease, uncomfortable or not at home in the situation. Under such conditions, they appear as incompetent, and urge caregivers to respond in such a way that their competence can be raised. The issue is not how to measure their incompetence, but how to help them to become more competent, that is to get a practical grip on their situation and to be able to live out their lives in such a way that they develop their identity in relations with others. From a hermeneutic point of view, assessing a patient's capacity implies focusing on the patient's way of meaning making and regarding her behavior from the perspective of practical rationality. The focus should not be on the assessment as a matter of fact, but on improving capacity. This requires allowing the patient to experience the world meaningfully and affording her, in the context of a supportive and trustful institutional environment, the possibility of developing a personal narrative where her choices are expressed verbally or non-verbally.

Adult↗

PubMed2004

Being a Parkinson's patient: immobile and unpredictably whimsical literature and existential analysis.

What is characteristic of being a Parkinson's patient? This article intends to answer this question by means of an analysis of novels about people with Parkinson's disease, personal accounts, and scientific publications. The texts were analyzed from an existential-phenomenological perspective, using an adapted version of the existential analysis. Being a Parkinson's patient is apparently characterized by an existential paradox: life appears simultaneously immobile and unpredictably whimsical. This may manifest itself in the person's corporeality, in his being-in-time and in-space, in his relating to things and events, his life-world, and in his being-together-with-others as an individual. Finally, some specific characteristics of being a Parkinson's patient are described that may be relevant for purposes of adequate care, as is to be specified by further research.

Adaptation, Psychological↗

PubMed2004

Integrated empirical ethics: loss of normativity?

An important discussion in contemporary ethics concerns the relevance of empirical research for ethics. Specifically, two crucial questions pertain, respectively, to the possibility of inferring normative statements from descriptive statements, and to the danger of a loss of normativity if normative statements should be based on empirical research. Here we take part in the debate and defend integrated empirical ethical research: research in which normative guidelines are established on the basis of empirical research and in which the guidelines are empirically evaluated by focusing on observable consequences. We argue that in our concrete example normative statements are not derived from descriptive statements, but are developed within a process of reflection and dialogue that goes on within a specific praxis. Moreover, we show that the distinction in experience between the desirable and the undesirable precludes relativism. The normative guidelines so developed are both critical and normative: they help in choosing the right action and in evaluating that action. Finally, following Aristotle, we plead for a return to the view that morality and ethics are inherently related to one another, and for an acknowledgment of the fact that moral judgments have their origin in experience which is always related to historical and cultural circumstances.

Coercion↗

PubMed2003

Health care ethics and health law in the Dutch discussion on end-of-life decisions: a historical analysis of the dynamics and development of both disciplines.

Over the past three or four decades, the concept of medical ethics has changed from a limited set of standards to a broad field of debate and research. We define medical ethics as an arena of moral issues in medicine, rather than a specific discipline. This paper examines how the disciplines of health care ethics and health care law have developed and operated within this arena. Our framework highlights the aspects of jurisdiction (Abbott) and the assignment of responsibilities (Gusfield). This theoretical framework prompted us to study definitions and changing responsibilities in order to describe the development and interaction of health care ethics and health law. We have opted for the context of the Dutch debate about end-of-life decisions as a relevant case study. We argue that the specific Dutch definition of euthanasia as 'intentionally taking the life of another person by a physician, upon that person's request' can be seen as the result of the complex jurisdictional process. This illustrates the more general conclusion that the Dutch debate on end-of-life decisions and the development of the two disciplines must be understood in terms of mutual interaction.

Bioethics↗

PubMed2002

[Mental competence and elderly care].

Competence or decision-making capacity are concepts, which are far from clear-cut. The normative consequences of an incapacity-judgment in elderly care require a balanced approach, which takes into consideration the risk of misuse in the context of the justification of interventions that are applied without consent of the patient. In this article a number of central issues in the debate on decision-making capacity are discussed. The different criteria, which are proposed to assess capacity, are discussed as well as the development of instruments in order to objectify capacity. It is concluded that the common approach towards decision-making capacity, which is strongly cognitive-oriented, is inadequate. A number of relevant aspects remain underexposed within this approach. A broader approach is explored, which takes into account the role of emotions, identity, and dialogue and deliberation. The different approaches are illustrated by way of a case example.

Adult↗