Ruud ter Meulen

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.

Actual interaction and client centeredness in home care.

The purpose of this study is to explore client-nurse interaction from a client perspective with respect to client-centered care. A grounded theory study was conducted with Dutch clients who were chronically ill and receiving home care. Data were collected by focus interviews with 8 client informants, participatory observations with 45 clients, and semistructured interviews with 6 clients. The core category actual interaction was identified. Six patterns of actual interaction were distinguished. Changes in actual interaction could be related to changes in desired participation by the client and in allowed client participation by the professional. From the clients perspective, client-centeredness means congruence between desired and allowed participation. Congruence was experienced with consent, dialogue, and consuming. Congruence is not necessarily synonymous with promoting patient participation or with doing as the client wants. Ongoing attentiveness, responsiveness, promotion of client autonomy, and being a critical caregiver are recommended.

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.

The expectation(s) of solidarity: matters of justice, responsibility and identity in the reconstruction of the health care system.

We analyse solidarity as a mixture of social justice on the onehand and a set of cultural values and ascriptions on the otherhand. The latter defines the relevant sense of belonging togetherin a society. From a short analysis of the early stages of theDutch welfare state, we conclude that social responsibility wasoriginally based in religious and political associations. In theheyday of the welfare state, institutions such as sick funds,hospitals or nursing homes became financed collectively entirelyand became accessible to people of all denominations. Solidaritywas transformed in a more general category, related to the statusof Dutch citizenship. Responsibility was transformed tocollective responsibility.Financial pressures on the Welfare State have resulted in adebate on choices in health care and in a number of systemreforms, so far relatively small. In the surrounding discourse,justice was linked to private responsibility. Both fromgovernment officials and from participants in the societaldebate, moralistic overtones could be heard concerning the threatof overburdening of the health care system by citizens.In this paper, we develop a concept of reflexive solidarity thatlinks elements of social justice to conceptualisations ofresponsibility that address policy makers and health careinstitutions as well as citizens, in their role of carereceivers. A short analysis of the phenomenon of personal budgetsin care services should prove that our concept of reflexivesolidarity is not empty. Linked to, but beyond the concept ofjustice, issues of social responsibility can be addressed withoutmoralistic overtones.

Supporting Stroke Patients’ Autonomy During Rehabilitation

In a qualitative study, 22 stroke patients undergoing rehabilitation in three nursing homes were interviewed about constraints on and improvements in their autonomy and about approaches of health professionals regarding autonomy. The data were analysed using grounded theory, with a particular focus on the process of regaining autonomy. An approach by the health professionals that was responsive to changes in the patients’ autonomy was found to be helpful for restoration of their autonomy. Two patterns in health professionals’ approach appeared to be facilitatory: (1) from full support on admission through moderate support and supervision, to reduced supervision at discharge; and (2) from paternalism on admission through partial paternalism (regarding treatment) to shared decision making at discharge. The approach experienced by the patients did not always match their desires regarding their autonomy. Support and supervision were reduced over time, but paternalism was often continued too long. Additionally, the patients experienced a lack of information. Tailoring interventions to patients’ progress in autonomy would stimulate their active participation in rehabilitation and in decision making, and would improve patients’ preparation for autonomous living after discharge.

Editorial: Mental Capacity: In Search of Alternative Perspectives

Respecting patient autonomy is an important value in (mental) health care. In many jurisdictions, this value is translated into the concept of informed consent, which implies that before treatment or research can take place, the patient or research subject should give consent on the basis of relevant information which is provided by the health care worker or researcher. The concept of informed consent is based on the volenti non fit injuria principle, which states that a person is not harmed by acts of others to which he or she has consented (Feinberg, 1986). One of the preconditions for informed consent to be valid is that the patient or research participant has mental capacity (Faden and Beauchamp, 1986). In order to execute his or her rights, the person involved ought to have the capacity or competence to decide (decision making capacity) about treatment or research participation. In case the person lacks such decision making capacity, others may have authority to decide for the patient (proxy consent). In a number of clear-cut cases, judgments about capacity are uncontroversial, as in the case of a comatose patient or a newborn or very young infant. The issue of mental capacity generally arises (and becomes more controversial) with regard to patients who belong to ‘vulnerable’ groups: the cognitively impaired elderly, the mentally handicapped, individuals suffering from mental illness and children (Berghmans, 2001).

Consumer Choice in Dutch Health Insurance after Reform

This article investigates the scope and effects of enhanced consumer choice in health insurance that is presented as a cornerstone of the new health insurance legislation in the Netherlands that will come into effect in 2006. The choice for choice marks the current libertarian trend in Dutch health care policymaking. One of our conclusions is that the scope of enhanced choice should not be overstated due to many legal and non-legal restrictions to it. The consumer choice advocates have great expectations of the impact of enhanced choice. A critical analysis of its impact demonstrates that these expectations may not become true and that enhanced consumer choice should not be perceived as the ‘magic bullet’ for many problems in health care.

Client-Centered Home Care: Balancing Between Competing Responsibilities

This study explores and describes the perceptions of nurses with respect to everyday client-centered care. A grounded theory study was conducted with 10 Dutch nurses and auxiliary nurses giving home care to chronically ill clients. Participatory observations and semistructured interviews were held. Nurses perceived roles and responsibilities competing with the role as a responsive professional to the client demand: a critical professional, developer of client competencies, individual, and employee. Strategies in balancing between competing responsibilities were distinguished: pleasing, dialoguing, directing, and detaching. Directing (related to impaired client competencies) and detaching (related to organizational barriers) were also used as second choice strategies. Effectively balancing between competing responsibilities was seen in dialoguing and directing as second choice. Conditions identified related to these strategies are awareness of, and responsibility taking for competing responsibilities. Recommendations for practice concern a care relationship and a dialogue with the client, critical ethical reflection, professional autonomy, self-assertiveness and organizational support.

Dutch Nurses' Attitudes Towards Euthanasia and Physician-Assisted Suicide:

This article presents the attitudes of nurses towards three issues concerning their role in euthanasia and physician-assisted suicide. A questionnaire survey was conducted with 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The study was conducted in the Netherlands between January 2001 and August 2004. The results show that less than half (45%) of nurses would be willing to serve on committees reviewing cases of euthanasia and physician-assisted suicide. More than half of the nurses (58.2%) found it too far-reaching to oblige physicians to consult a nurse in the decision-making process. The majority of the nurses stated that preparing euthanatics (62.9%) and inserting an infusion needle to administer the euthanatics (54.1%) should not be accepted as nursing tasks. The findings are discussed in the context of common practices and policies in the Netherlands, and a recommendation is made not to include these three issues in new regulations on the role of nurses in euthanasia and physician-assisted suicide.

FAMILY SOLIDARITY AND INFORMAL CARE: THE CASE OF CARE FOR PEOPLE WITH DEMENTIA

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role.