The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients’ views on their participation in care and (...) decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: active participants, patients giving active consent, and patients giving passive consent to medical decisions. (shrink)

The aim of this study was to explore experiences of participation in treatment planning decisions from the perspective of patients recently treated for colorectal cancer. Ten patients were purposively selected and interviewed. Constant comparative analysis, the core concept of grounded theory, was used. The dimensions were developed and organized into the main theme of ‘compliant participation in serious decisions’, which was composed of the two variations: complying with participation; and complying without participation. Complying with participation was characterized by feelings of (...) self-confidence and self-competence and by open dialogue between the participants, significant others and the physician. Complying without participation was characterized by participants’ feelings of uncertainty and distress, and of being rushed into submitting to decisions without having time to reflect on the information provided or the opportunity to influence the treatment and care process. To participate builds on open and affirming dialogue, information and knowledge about the illness. Patient participation in treatment and care decision making is interpreted as a health promoting way of coping with illness. (shrink)

This essay explores the evolution of the tension between the principles of autonomy and beneficence in American health care over the past several decades. In retrospect it is clear that the social movements of the 1960s and 70s set the tone and the goals for the emergence of a new emphasis on patient autonomy. Indeed, the impact of civil liberties-minded lawyers on the promotion of a commitment to autonomy is far more vital than the term “bioethics” commonly suggests. Tracing the (...) impact of this principle on clinical encounters over the past 25 years makes apparent that consumers have extended their influence over a wide range of treatment decisions. This influence is now being reinforced by an extraordinary information revolution, which includes the computer, the web, the dot.coms, the search engines, and such novel practices as Direct-to-Consumer advertising by pharmaceutical companies. The impact of these developments may be seen in such diverse issues as physician-assisted suicide and the failure of national health insurance initiatives. (shrink)

: Bioethicists have articulated an ideal of shared decision making between physician and patient, but in doing so the role of clinical uncertainty has not been adequately confronted. In the face of uncertainty about the patient's prognosis and the best course of treatment, many physicians revert to a model of nondisclosure and nondiscussion, thus closing off opportunities for shared decision making. Empirical studies suggest that physicians find it more difficult to adhere to norms of disclosure in situations where there is (...) substantial uncertainty. They may be concerned that acknowledging their own uncertainty will undermine patient trust and create additional confusion and anxiety for the patient. We argue, in contrast, that effective disclosure will protect patient trust in the long run and that patients can manage information about uncertainty. In situations where there is substantial uncertainty, extra vigilance is required to ensure that patients are given the tools and information they need to participate in cooperative decision making about their care. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded.Main outcome (...) measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)