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.     

Patient participation in decision making at the end of life as seen by a close relative

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors' manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients' participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients' opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient's personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.     

Decision support: helping patients and families to find a balance at the end of life

Terminally ill patients and their families face many decisions at the end of life that can sometimes be overwhelming. Nurses play a key role in providing decision support so that patients and their families can make timely decisions about their health care that reflect their individual needs and circumstances. The Ottawa Decision Support Framework can help nurses to assess patients' decision-making needs, provide tailored decision support and evaluate the effect of their interventions. The theoretical underpinnings of the model and its implications for palliative care clinical practice are discussed.     

Relational autonomy or undue pressure? Family’s role in medical decision‐making

The intertwining ideas of self-determination and well-being have received tremendous support in western bioethics. They have been used to reject medical paternalism and to justify patients' rights to give informed consent (or refusal) and execute advanced directives. It is frequently argued that everyone is thoroughly unique, and as patients are most knowledgeable of and invested in their own interests, they should be the ones to make voluntary decisions regarding their care. Two results of the strong focus on autonomy are the rejection of the image of patients as passive care recipients and the suspicion against paternalistic influence anyone may have on patients' decision-making process. Although the initial focus in western bioethics was on minimizing professional coercion, there has been a steady concern of family's involvement in adult patients' medical decision-making. Many worry that family members may have divergent values and priorities from those of the patients, such that their involvement could counter patients' autonomy. Those who are heavily involved in competent patients' decision-making are often met with suspicion. Patients who defer to their families are sometimes presumed to be acting out of undue pressure. This essay argues for a re-examination of the notions of autonomy and undue pressure in the contexts of patienthood and relational identity. In particular, it examines the characteristics of families and their role in adult patients' decision-making. Building on the feminist conception of the relational self and examining the context of contemporary institutional medicine, this paper argues that family involvement and consideration of family interests can be integral in promoting patients' overall agency. It argues that, in the absence of abuse and neglect, respect for autonomy and agency requires clinicians to abide by patients' expressed wishes.     

Patient-professional partnership in spinal cord injury rehabilitation

There has been considerable pressure from both patients and professionals for greater patient involvement in the delivery of health services in recent years, particularly in the domain of rehabilitation. However, it has been suggested that involvement by patients is limited to rehabilitation. Accordingly, this study aimed to explore and describe patients' and professionals' experiences of patient participation in team decision-making processes. This article presents findings from a larger ethnographic study, which employed interviews and participant observation to collect data. This article focuses on the results from semistructured interviews, which were conducted with 30 healthcare professionals and 20 patients in a spinal cord injury unit in the UK. Findings suggest that the experience of team membership and decision-making is shaped by professional paternalism. Patients and professionals perceive that they are involved in a partnership where patients make decisions. However, different levels of paternalism in the professional-patient relationship within team decision-making processes emerged from the data. These have been categorized as 'open paternalism' where power and control lies with professionals; 'they tell me what they are doing' where patients are informed of decisions; 'they can always say no' where patients can agree or disagree; 'making the right choice' where patients are steered towards the choice professionals consider as the 'right' choice; and 'active participation' where patients choose the course of action. It is suggested that professionals should examine their own practice and attempt to develop ways of working that empower patients to become equal members of the rehabilitation team.     

An ethical case for patient self-determination

The self-determination of patients can be impeded or enhanced to a significant extent by the professionals who care for them. The autonomy of cancer patients especially is affected by their care givers. These patients often face difficult choices in the management of their illness: decisions about pain control, treatment choice, research participation, family involvement, withdrawal of treatment, and the degree to which they wish to be informed in making each of these decisions. The extent to which consent is free and informed and the autonomy of the patient not impeded, but positively enhanced, is determined by the professional. Is it fair to assign the professional so much responsibility for patient autonomy? Are patients not free to make decisions as they wish? In a technological society, serious illness is managed by professionals who incur a major share of responsibility for the degree of freedom that patients exercise. When patients are not encouraged and assisted to exercise their freedom, they cannot be autonomous. When an experience is brought under professional management, self-determination is possible only to the extent that it is both protected and promoted, or actively advocated. In the care of cancer patients, the central responsibility for advocacy belongs to the professional best situated within the framework of health care to sustain a partnership with the patient, and that professional is the nurse.     

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.     

A study of factors influencing patients' decisions to undergo bone marrow transplantation from a sibling or matched related donor.

This study provides a theoretical analysis of factors influencing patients' decisions to undergo bone marrow transplantation. Data were gathered using single, unstructured interviews with seven bone marrow transplant candidates, and analysed in accordance with grounded theory methodology. Six theoretical categories were generated from the data. These were: the logical mind, gut instinct, personal aims, hope, preparing for transplant and trust in professionals. The findings are discussed in relation to theoretical literature and other research. The results of the study suggest that providing clinical or statistical information about transplantation may not, in itself, constitute adequate decision support. The adoption of a predominantly one-way process, whereby health-care professionals inform and educate patients, may fail to elicit broader subjective and contextual issues that influence patients' decisions. Patients may not fully consider treatment risks, or may interpret treatment information in idiosyncratic ways. Professionals may not foster adequate appreciation of risks, or may inadvertently frame information in ways that render some treatment options more acceptable than others. Recommendations focus upon: increasing professionals' awareness of the complex issues that may underpin patients' decisions, broader assessment of patients' understanding of decision situations, and tailoring information to meet the needs of individual patients.     

Patient involvement in decision-making in surgical and orthopaedic practice. Effects of outcome of operation and care process on patients' perception of their involvement in the decision-making process.

As part of the project Perioperative Risk,--an epidemiological study of complications associated with surgical and orthopaedic operations--the article reports a study of patients' perception of their involvement in decision-making in medical consultations, and how the outcomes of surgery and subsequent care determine patients' evaluation of the treatment. Patients' view of their involvement in the decision-making process was obtained before as well as after surgery. The results reveal that the more satisfied the patients were with the outcome of the operation, and the post-operative situation, the more they were inclined to assume responsibility for the decision to have surgery. The opposite response pattern, indicating a negative evaluation of either the operation or the post-operative care, resulted in an outcome where patients described others--especially the physician--as being responsible for the decision to have surgery. The results suggest that patients' evaluations of surgery are based upon a more global reaction to what happened during the entire care process. Dissatisfaction with either the operation or the post-operative care leads to a negative outcome in terms of patients' perceptions of their own involvement. This emphasizes the importance of all health care professionals seeing themselves as a team with complementary responsibilities for success in health care.     

Surrogate Decision-Making: How to Promote Best Outcomes in Difficult Times

Respect for patient autonomy is highly valued in American society and in nursing professional codes of ethics. US law protects the right of patients to self-determination in health care decisions. Advanced practice registered nurses must be able to identify patients who are not competent to make these decisions and the surrogates who will make decisions in their place. Advance planning with patients and providing optimal support for their surrogates are part of individualized, total-patient care and key to promoting best outcomes for patients and their families who are experiencing extremely difficult choices and significant life transitions.     

Research Article: Perceptions of Japanese patients and their family about medical treatment decisions

Internationally, nurses and physicians are increasingly expected to undertake roles in communication and patient advocacy, including in Japan, where the reigning principle underlying medical ethics is in transition from paternalism to respect for patient autonomy. The study reports the results of a survey in two Japanese teaching hospitals that clarified the perspectives of 128 patients and 41 family members regarding their current and desired involvement in health decision‐making. The commonest process that was desired by patients and their family was for patients to make decisions after consultation with both the physician and their family. The decision‐making preferences for competent patients varied among the participants, who believed that families have a crucial role to play in health‐care decision‐making, even when patients are competent to make their own decisions. The findings will inform health professionals about contemporary Japanese health‐care decision‐making and the ethical issues involved in this process, as well as assist the future development of a culturally relevant model to support patients' preferences for ethical decision‐making.     

Nurses' involvement in 'do not resuscitate' decisions on acute elder care wards

AIM: This paper reports the involvement of nurses in 'do not resuscitate' decision-making on acute elder care wards and their adherence to such decisions in the case of an actual cardiopulmonary arrest. BACKGROUND: Previous literature showed that nurses are involved in half or less than half of 'do not resuscitate' decisions in hospitals, but their involvement in this decision-making on acute elder care wards in particular has not been investigated. METHOD: A questionnaire was sent in 2002 to the head nurses of all acute elder care wards in Flanders, Belgium (n = 94). They were asked whether nurses had been involved in the last 'do not resuscitate' decision-making process on their ward and whether nurses 'never', 'rarely', 'sometimes', 'often' or 'always' started resuscitation in case of cardiopulmonary arrest of patients with 'do not resuscitate' status and of those without. RESULTS: The response rate was 86.2% (n = 81). In 74.7% of the last 'do not resuscitate' decisions on acute elder care wards in Flanders, a nurse was involved in the decision-making process. For patients with 'do not resuscitate' status, 54.3% of respondents reported that cardiopulmonary resuscitation was 'never' started on their ward, 'rarely' on 39.5% and 'sometimes' on 6.2%. For patients without 'do not resuscitate' status, nurses started cardiopulmonary resuscitation 'rarely' or 'sometimes' on 22.2% of all wards, and 'often' or 'always' on 77.8%. CONCLUSION: To make appropriate 'do not resuscitate' decisions and to avoid rash decision-making in cases of actual cardiopulmonary arrest, nurses should be involved early in 'do not resuscitate' decision-making. If institutional 'do not resuscitate' guidelines were to stress more clearly the important role of nurses in all kinds of end-of-life decisions, this might improve the 'do not resuscitate' decision-making process.     

Activities of home-based heart failure nurse specialists: a modified narrative analysis.

BACKGROUND: Heart failure nurse specialists strive to optimize patients' outcomes in home-based settings. OBJECTIVE: To document the activities of home-based heart failure nurse specialists. METHOD: A modified narrative analysis of clinical notes of home-based heart failure nurse specialists during a 12-month period was used. RESULTS: Data analysis revealed 7 key activities of home-based heart failure nurse specialists: (1) monitoring signs and symptoms and reinforcing patients' self-management: identifying trends and appropriate action; (2) organization, liaison, and consultation with other health professionals to deal with changes in clinical status; (3) clarifying and reinforcing patients' self-care strategies; (4) assisting patients in their desire to avoid institutionalized care; (5) identifying patients' psychosocial issues: dealing with social isolation; (6) providing support: journeying with patients and patients' families; and (7) helping patients and patients' families deal with death and dying. CONCLUSIONS: A major proportion of the activities of home-based heart failure nurse specialists are related to facilitating communication between health professionals and providing information and support to patients and patients' families.     

Nurses decision-making in clinical practice

AIM: To identify what decisions nurses make in medical, surgical and critical care areas and compare the results. METHOD: A clinical decision-making questionnaire (CDMQ) consisting of 15 statements was developed. A total of 60 nurses completed the questionnaire: 20 from each of three clinical areas. RESULTS: Most nurses, in all specialties, regularly made clinical decisions on direct patient care, which included providing basic nursing care and psychological support, and teaching patients and/or family members. Although nurses in all specialties regularly managed the work environment, they did not make decisions on the ward or unit budget, supervise junior staff or mentor student nurses. Critical care nurses regularly made decisions on their extended roles, such as acting in emergency situations and deciding to change patient medication, while medical and surgical nurses only did this occasionally. Length of clinical experience is significantly related to the frequency of decision-making. CONCLUSION: The decisions nurses make are directly related to the clinical areas in which they work. However, it would be interesting to know if nurses showed particular aptitudes for different types and levels of decision-making and if this is related to other factors such as personality, education and experience in nursing.