Cancer patients' views and experiences of participation in care and decision making

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: (1) active participants (n = 7), (2) patients giving active consent (n = 9), and (3) patients giving passive consent to medical decisions (n = 18).     

Children's participation in the decision-making process during hospitalization: an observational study

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child's view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children's participation in decision making concerning their health care.     

Learning, decisions and transformation in critical care nursing practice

Critical care nurses are key providers in a high acuity environment. This qualitative research study explored ethical decision making in a critical care practice setting. Fifteen critical care nurses with varying experience and education levels were purposively sampled to assure the representativeness of the data. The theoretical concepts of experiential learning, perspective transformation, reflection-in-action and principle-based ethics were used as a framework for eliciting information from the participants. A new model of focused reflection in ethical decision making was developed. Findings showed that having a role model or mentor to help guide the ethical decision-making process was critical for focused ethical discourse and the decision making.     

Conflict resolution strategies: when ethical dilemmas evolve into conflict

In critical care, ethical dilemmas arise when all duties, rights, and goals cannot be satisfied by the alternatives that are available. Conflicts evolve from ethical dilemmas due to differences in how nurses, physicians, administrators, and patients or families who are involved in a clinical situation assign priorities or interpret roles and responsibilities. This author presents strategies for critical care nurses to use to resolve conflicts that arise in relation to ethical dilemmas.     

Attitudes towards do-not-resuscitate decisions: differences among health professionals in a Portuguese hospital

OBJECTIVES: Implementation of an in-hospital cardiopulmonary resuscitation (CPR) program stresses the need to discuss do-not-resuscitate (DNR) orders, as CPR may not be desirable in some terminally ill patients. Ethical, social, educational, and professional issues may influence these decisions. This study was designed to evaluate attitudes among four categories of healthcare professionals. DESIGN AND SETTING: Survey in a tertiary hospital in Portugal. METHODS: An anonymous self-completed questionnaire was distributed to 825 staff members, 527 of whom responded (20% physicians, 44% nurses, 20% health technicians, 16% healthcare domestic staff). Responses were compared between the various health professional groups. RESULTS: The level of medical/health training was positively related to the frequency of DNR decisions (physicians and nurses could foresee more circumstances warranting DNR decisions than technical/administrator or domestic staff) and negatively related to the willingness to include the patient's family in the DNR decision (physicians and nurses saw less need for the family's participation than technical/administrator or domestic staff). Significant differences were also found between professional groups regarding the physician's responsibility and the nurses' participation in DNR decisions. There was no difference between the professional groups regarding the need to note the DNR decision in clinical charts. CONCLUSION: Health professionals differ in their attitudes concerning DNR decisions. In particular, the level of medical/health training and/or degree of involvement with the patient's daily care may play an important role in DNR decisions.     

A qualitative analysis of ethical problems experienced by physicians and nurses in intensive care units in Turkey

In this qualitative study, we aimed to identify and compare the ethical problems perceived by physicians and nurses in intensive care units at Baskent University hospitals in Turkey. A total of 21 physicians and 22 nurses were asked to describe ethical problems that they frequently encounter in their practice. The data were analyzed using an interactive model. The core problem for both physicians and nurses was end-of-life decisions (first level). In this category, physicians were most frequently concerned with euthanasia while nurses were more concerned with do-not-resuscitate orders (second level). At the third level, we saw that almost all of the participants' responses related to negative perceptions about euthanasia. Communication and hierarchical problems were the second most reported main category. Nurses were more likely to cite problems with hierarchy than physicians. At the third level, a large percentage of nurses described communication problems with authority and hierarchical problems with physicians. In the same category, physicians were most often concerned with communication problems with patients' relatives. The ethical problems were reported at different frequencies by physicians and nurses. We asked the participants about ethical decision-making styles. The results show that nurses and physicians do not follow a systematic pattern of ethical decision making.     

Seasonal bed closures in an intensive care unit: a qualitative study

OBJECTIVE: To describe perceptions of the administrative procedures for seasonal bed closures and their consequences in the intensive care unit (ICU), and to critique this example of health care priority setting for legitimacy and fairness. DESIGN: A qualitative study using case study methods and interviews with key participants. We evaluated fairness and legitimacy of the bed closure process using 4 domains of the ethical framework of "accountability for reasonableness." SETTING: An university-affiliated medical/surgical ICU in Eastern Canada. PARTICIPANTS: ICU clinicians (9 bedside nurses and 5 physicians), and administrators (3 ICU managers and 2 senior hospital executives). MAIN OUTCOME MEASURES: Perceptions of ICU clinicians and administrators regarding the ICU bed closure decision-making process and its consequences. RESULTS: Emerging themes concerned: (1) bed closure rationale (including arbitrary decision making, bed closure masquerading as a code for a nursing shortage, and suboptimal evidence base for implementing closures); (2) bed closure process (viewed as unclear with insufficient prior publicity and inadequate subsequent review); and (3) adverse consequences (including safety issues, negative professional working relationships, and poor morale). Although an appeals mechanism existed, nurses were not available to staff reopened beds so this condition is only partially met. The relevance, publicity, and enforcement conditions for accountability of reasonableness were not satisfied, offering opportunities for improvement. CONCLUSION: Clinicians and administrators are readily able to identify shortcomings in the seasonal bed closure process in the ICU. These shortcomings should be targeted for improvement so that intensive care health services delivery is legitimate and fair.     

Important aspects of care and assistance for children with cancer

This study examined aspects of care and assistance that are important for 8- to 12-year-old children with cancer. Data were gathered through interviews with 25 children, 31 parents, and 32 nurses. Each participant was asked: “What caring aspects are important for you/your child/the child to feel cared for?” and “What help, if any, do you/your child/the child need outside the hospital?” Data were analyzed by content analysis. The following important caring aspects were identified: amusement, clinical competence, continuity, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, and time. Children most frequently mentioned the importance of social competence, amusement, and satisfaction of basic needs. Parents and nurses most frequently mentioned the importance of information, social competence, and participation in decision making. The following important assistance aspects were also identified: emotional support, family life, meeting friends, practical support, rehabilitation, and school support. Two-thirds of the children did not mention that they needed any help outside the hospital. According to parents and nurses, one third of the children needed emotional support, whereas none of the children mentioned a need for this.     

FROM THE EDITOR—INTRODUCTION OF GUEST EDITOR

A meta-analysis of 125 nurses in three types of nursing roles investigated whether these nurses received social support from their administrators, the types of social support received, and whether more or less social support from these managers was desired. The Arizona Social Support Interview Schedule (ASSIS) was used to assess these questions. Results showed that home health nurses received social participation and physical assistance, whereas staff nurses received positive feedback and physical assistance. Nursing faculty received little support from their managers. Social exchange theory predicts that intangibles such as social support should exist in equitable relationships. It is possible that the difference in the nurses' and administrators' statuses and power levels affected staff nurses' results. Mental health clinical nurse specialists can use these results to help nurses understand their work relationships.     

Attitudes toward limitation of support in a pediatric intensive care unit

OBJECTIVE: To prospectively determine opinions of members of a pediatric intensive care unit (PICU) team regarding the appropriateness of aggressive care. The types of support that caregivers sought to limit and their reasons for wanting these limits were collected over time. DESIGN: Prospective survey of caregiver opinions. SETTING: PICU in an academic tertiary care children's hospital. SUBJECTS: A total of 68 intensive care nurses, 11 physicians attending in the PICU, 10 critical care and anesthesia fellows, and 24 anesthesia and pediatric residents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During a 6-month period, 503 patients were admitted to the PICU. Within this time period, 52.4% of all deaths were preceded by limitation of support, with 100% of noncardiac surgical deaths preceded by limitation of medical interventions. At least one caregiver wished to limit care for 63 of these patients (12.5%). When caregivers wished to limit support they most frequently wished to limit invasive modes of support such as cardiopulmonary resuscitation (94%) and hemodialysis (83%). The ethical rationales identified most often for wishing to limit support were burden vs. benefit (88%) and qualitative futility (83%). Preadmission quality of life was cited less frequently (50%). Caregivers were less likely to limit care on the basis of quality of life. Nurses and physicians in the PICU were very similar to each other in the types of support they thought should be limited and their ethical rationales. CONCLUSIONS: When making decisions about whether or not to limit care for a patient, caregivers were more likely to rely on the perceived benefit to the patient than preadmission quality of life.     

Perceptions and expectations of Baccalaureate-prepared nurses in Jordan: Community survey

The overall purpose of this paper is to describe the process of utilizing community participation for curriculum design to develop a new school of nursing. A brief Community Needs Assessment Survey was carried out in order to explore community perceptions and expectations of Baccalaureate-prepared nurses in Jordan. The sample consisted of 152 participants who were staff nurses, nurse administrators, nurse supervisors, nurse educators, physicians, pharmacists and consumers of services. Data were collected through a self-administered survey form using open-ended questions. Participants were asked to describe their perceptions of nursing and nurses, the desired professional skills and personal characteristics of the Baccalaureate-prepared nurse, important curriculum contents and to provide suggestions or comments for improving the preparation of Bachelor of Science in Nursing (BSN) nurses. The findings indicated that nursing was viewed as a caring profession where nurses care for the person both in sickness and health. Several professional skills and personal characteristics emerged as being important for the BSN nurse, including clinical competence, the desire to continue learning, communication skills, ethical and moral character, critical thinking, assessment skills, and computer and English-language skills. The participants provided the desired curriculum contents and suggestions related to the expected skills. Implications for nursing education were discussed.     

Staff nurse retention. Laying the groundwork by listening

In response to critical staff shortages, the nursing leadership of a five-hospital system implemented a research program to create a health promoting organization that would support nurse retention. Since a health promoting organization supports each individual's participation in the decision-making process through communication and consensus-building, listening to the concerns of current nurse managers (Parsons & Stonestreet, 2003) and staff nurses was crucial for developing innovative retention strategies. This qualitative study utilized open-ended, data-generating questions in focus groups to elicit the issues staff nurses considered crucial to their continued employment. Consistent with findings in the literature, the quality of administrative management systems and relationships with physicians, nurse managers, peers, and administrators were essential factors for nurse retention in this system.     

Factors influencing ethical decision making in the home setting.

The process of ethical decision making does not differ according to the patient care setting. However, various factors in home care affect the way in which decisions are made. The factors to consider are the amount of time needed to make a decision, the involvement of the patient and family, the need for support systems, the difficulties with interdisciplinary communication, and the lack of an ethics committee. Recognizing the ways in which these variables affect the decision making can help home healthcare nurses resolve the ethical dilemmas they face. In addition, staff education programs, the use of consultants, and the development of ethics committees are possible strategies to facilitate ethical decision making.     

‘But there are so many referrals which are totally … only generating work and irritation’: a qualitative study of physicians’ and nurses’ experiences of work tasks in primary care in Sweden

ObjectiveThis study explored the perceptions of physicians and nurses in Swedish primary care regarding the legitimacy of their work tasks and the use of their professional competence.Design and settingThis qualitative study was based on manifest content analysis. Data were collected with individual semi-structured interviews of physicians and nurses at publicly managed primary care centres in the Region Östergötland, Sweden. To include both large and small primary care centres, we applied strategic sampling. Among 15 primary care centres invited, nine agreed to participate, including four urban, two suburban, and three rural centres.SubjectsThe study included 11 physicians and 13 nurses from nine primary care centres.Main outcome measures and resultsThe physicians and nurses perceived several of their work tasks as illegitimate. In addition, they experienced work-related difficulties, due to resource shortages, challenging electronic data systems, work inefficiencies, and that there were insufficient cooperation with, and problems drawing the line between, primary care and hospital care responsibilities. However, most found that their individual expertise was appropriately used, overall.ConclusionsStrained work situations and illegitimate work tasks may inflate discontentment and lead to negative work stress. Nevertheless, the staff felt that competence was used appropriately in the tasks considered legitimate.

Key Points

• Physicians and nurses in primary care in Sweden described several work tasks as illegitimate.
• Physicians and nurses described problems with heavy workloads, resource shortages, electronic data-system challenges, inefficiencies and with cooperation and drawing the line between primary care and hospital care.
• Overall, physicians and nurses believed their individual expertise was used appropriately.
• To uphold sustainable working conditions and thoughtful use of staff competence, organisational measures, such as redistributing staff from hospital to primary care were proposed.

     

Marketing the home healthcare agency. Do nurses and physicians agree?

Increasingly, hospital nurse administrators are being called upon to organize and implement home care services and to market these services to physicians, patients, and family members. A survey of hospital personnel revealed that both nurses and physicians perceived themselves as the persons primarily responsible for determining the patient's need for postdischarge home care. In listing criteria for selecting a home care agency for patient referral, nurses and physicians rated service dependability and nursing care quality as the most important criteria.