Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities: dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process.

BACKGROUND: Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. METHODS: This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. RESULTS: The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. CONCLUSION: The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

Stroke patients' needs and experiences regarding autonomy at discharge from nursing home.

In this qualitative study stroke patients rehabilitating in nursing homes experienced an increase in their autonomy (particularly in self-determination, independence and self-care) in the last weeks before discharge. The change in autonomy was found to be related to regained abilities and self-confidence, and to patients' strategies (e.g. taking initiative, being assertive). The attitude of health professionals and family, and the nursing home could influence patient autonomy. Overprotection, paternalism, care routines and an inconsistent approach constrain autonomy. Conversely, attentiveness, tailored interventions and a respectful dialogue facilitate autonomy, like moderate instrumental and emotional support by the family. Nursing homes can enhance autonomy by minimizing care routines and by providing room for doing activities independently and privately. Attention to patient autonomy may improve patients' active participation in rehabilitation, quality of life, and autonomous living after discharge. Multidisciplinary guidelines based on the results may increase attention to the stroke patients' autonomy and stimulate a team approach.

Patient autonomy during rehabilitation: the experiences of stroke patients in nursing homes.

This article describes the results of a grounded theory study among stroke patients (N=17, aged 50-85) in rehabilitation wards in nursing homes. Patient autonomy (dimensions: self-determination, independence and self-care) increases during rehabilitation due to patient factors (conditions and strategies of patient) and environmental factors (nursing home and strategies of health professionals and family). During rehabilitation patients are in a state of transition regarding autonomy: patients need support to enhance autonomy, gradually regain autonomy, and thereby need less support. Although facilitating environmental factors were discovered, patients also experienced constraining factors regarding patient autonomy. Health professionals should give more attention to self-determination and independence; the nursing home should offer stroke patients more opportunities to do familiar activities autonomously.

Facilitating and constraining factors on autonomy: the views of stroke patients on admission into nursing homes.

This article describes a model changing autonomy which was developed in a grounded theory study among stroke patients on admission into nursing homes for rehabilitation. Three dimensions of autonomy were identified: self-determination, independence, and self-care. On admission, patients' conditions (disabilities, multimorbidity, emotional state, and feeling like a layperson) and patients' strategies (waiting and seeing, and acting as a subordinate) constrain autonomy. Several environmental factors facilitate patient autonomy. The nursing home sustains patient autonomy by providing a hopeful atmosphere and room for autonomy. The health professionals facilitate autonomy by giving therapy, support and information, attentiveness and respect, paternalism and teamwork, Facilitating strategies of the family encompass emotional and instrumental support Care routines, lack of privacy, an unfamiliar environment, waiting periods, boredom, and lack of information were identified as constraining environmental factors. Developing guidelines and multidisciplinary courses regarding the approach to patient autonomy on admission is recommended.

Autonomy in the rehabilitation of stroke patients in nursing homes. A concept analysis.

This article presents a concept analysis of autonomy in relation to the rehabilitation of stroke patients. Analysis of the results of a literature survey provided three important concepts of autonomy in the field of biomedical ethics: self-governance, self-realization and actual autonomy. These concepts are compared with concepts from caring sciences and summarized in a table. The results indicate the importance of the social environment (formal and informal caregivers) for the restoration of autonomy. Because of the patient's condition and context, a social concept of autonomy makes more sense in the rehabilitation of stroke patients in nursing homes than does an individual concept. The concept analysis sheds light on the fact that the majority of studies regarding patient autonomy are primarily based on theoretical reflections, not on empirical studies. More research is warranted to gather information on how patients themselves consider and appreciate autonomy during rehabilitation, to explore the views of stroke patients' formal and informal caregivers and to investigate whether a social concept of autonomy is suitable for all phases of rehabilitation. Concerning the practice of rehabilitation, no definite conclusion can be given as yet.

Somatization in frequent attenders of general practice.

The DSM-III-(R) definition of somatization disorder is too restrictive for use in general practice. A more comprehensive definition, the "somatic symptom index" (SSI) has shown good validity in open populations. However, a definition has to differentiate validly within a population of frequent attenders to be a useful diagnostic instrument in general practice. We studied a threshold of five complaints (nearly identical to the SSI) in 80 Dutch general practice patients. Patients were selected on age (20-44 years), history of back, neck or abdominal complaints, and on frequency of consultation- at least 12 consultations in the previous 3 years, corrected for consultations with compelling somatic reason for encounter. Prevalence of somatization in this group was 45%. Women had a 2 times higher risk of somatization. A relation with age was not found. Somatization was related to depressive complaints (relative risk 2.5) and probably also to anxiety. Somatizing patients consulted their general practitioner more often and had more health problems (especially psychic problems) than non-somatizers. These results support the validity of this definition. The distinction between our definition of somatization and somatization defined as a symptom of psychiatric (e.g. depressive or anxiety) disorder is emphasized.