Involving People with Memory Loss in the Development of a Patient Handbook: A Strengths-Based Approach.

A memory clinic used two key approaches in developing a patient and family handbook: partnership with people with memory loss and strengths-based social work practice. Social worker coeditors of the handbook intentionally sought guidance from people with mild to moderate memory loss regarding handbook content, design, and overall tone. A focus group, three sessions of a review group, e-mails, and personal interviews were used to solicit and review input from participants. The editors also incorporated content contributions in the form of essays, quotations, and an original poem from people with memory loss, alongside contributions from clinic staff, university faculty, and community service providers. People with memory loss provided input in five areas: response to a new diagnosis, coping with memory loss, messages to other newly diagnosed people and health care professionals, available community resources, and recommendations for handbook design. The development process reinforced a key message of the handbook: People with memory loss exhibit ongoing strengths, which help them participate in life. The process also ensured that the handbook content and design would be relevant and applicable to its users. The handbook is now regularly distributed as a primary patient education tool in the memory clinic and community programs.

Continuing education in ethical decision making using case studies from medical social work.

Medical social workers have needs for training in ethics that is specific to dilemmas that arise while providing service to patients who are very ill, mentally compromised, or in a terminal condition. A social work department developed a continuing education training to educate social workers in bioethics related to determining decisional capacity and understanding standards of ethical decision making. Case studies are used to illustrate ethical conflicts and the role of social workers in resolving them. The benefits of case study training are discussed.

Buddhist ethics and end-of-life care decisions.

Buddhism has grown in the United States in the past 50 years. Immigrants come following long traditions. American converts are more eclectic. The first Buddhist precept prohibiting harm to living things, the virtue of compassion, and the goal of a peaceful death provide guidance for ethical decision making regarding organ donation, withholding and withdrawing life-sustaining treatment, voluntary cessation of eating, physician aid in dying, and euthanasia. Concepts and views from three Buddhist traditions and views of master practitioners are presented. Case examples illustrate some of the differences within Buddhism. Suggestions for social workers are provided.

Self-determination, the right to die, and culture: a literature review.

Self-determination is a primary ethical principle underlying social work practice in health care settings. Since the 1970s, a right-to-die movement that shares the social work commitment to self-determination has grown and influences end-of-life care decisions. However, the role of culture is notably absent in discussions of the right to die. A literature review was conducted to explore self-determination and the role of culture in the context of the history of the right-to-die movement. A total of 54 articles met the criteria for inclusion in the review. Of the total, 21 related to self-determination, and 12 related to ethnicity and culture at the end of life. A history based on the review of the right-to-die movement is presented. The review found that social workers support passively hastening death and that views of self-determination are affected by both law and culture. In response, social workers will face three tasks: (1) becoming more public in their support for client self-determination as an important standard in end-of-life care, (2) being more explicit in support of diverse cultural traditions in end-of-life decision making, and (3) expanding their traditional educational and bridging roles between families and medical personnel.

Improving social work in intensive care unit palliative care: results of a quality improvement intervention.

OBJECTIVE: The intensive care unit (ICU) is a focal point for decision making in end-of-life care. Social workers are involved in providing this care for patients and families. Our goal was to examine the social worker component of an intervention to improve interdisciplinary palliative care in the ICU. METHODS: The study took place at a 350-bed hospital with 65 ICU beds. We surveyed family members and social workers caring for patients who died in the ICU or within 30 hours of transfer from ICU. Clustered regression was used to assess the effect of the intervention on three outcomes: (1) families' satisfaction with social work, (2) social workers' reported palliative and supportive activities, and (3) social workers' satisfaction with meeting family needs. RESULTS: Of 590 eligible patients, 275 families completed surveys (response rate, 47%). Thirty-five social workers received 353 questionnaires concerning 353 unique patients and completed 283 (response rate, 80%). Social workers reported significant increase in the total number of activities for family members after the intervention. Some of the activities included addressing spiritual or religious needs, discussing disagreement among the family, and assuring family the patient would be kept comfortable. Neither social workers' satisfaction with meeting families' needs nor family ratings of social workers were higher after the intervention. Increased social worker experience and smaller social worker caseload were both associated with increased family satisfaction with social work. DISCUSSION: The increase in social worker-reported activities supports the value of the interdisciplinary intervention, but we did not demonstrate improvements in other outcomes. Increased social-worker experience and decreased social worker caseload were independently associated with better family ratings of social workers suggesting future directions for interventions to improve care by social workers. Future studies will need more powerful interventions or more sensitive outcome measures to document improvements in family-assessed outcomes.

Social workers in palliative care: assessing activities and barriers in the intensive care unit.

Social workers are playing an increasingly important role in providing palliative care to dying patients and their families in the intensive care unit (ICU). The purpose of this study was to determine which activities social workers provided to families of patients who die in the ICU, what barriers to care social workers identified, and whether these activities and barriers were associated with the social workers' satisfaction with the care provided to family members. The study took place at a 350-bed hospital with 65 ICU beds. We examined hospital records and identified 253 consecutive eligible patients who had died in an ICU between August 2003 and March 2004. Of these, 157 (62%) received social work services from one or more social workers. One hundred and seventy-eight questionnaires were sent to 27 social workers; 20 social workers completed 150 questionnaires for 136 patients giving a response rate of 84% for questionnaires sent to social workers (150/178). A multiple regression model with clustering under social workers was used to analyze the data. Talking about the family's feelings and providing support for decisions made by the family were the most frequent activities provided by social workers; both were positively associated with the social workers' satisfaction with meeting families' needs. A heavy patient caseload was one of the most common barriers to care identified by social workers. In conclusion, we identified specific activities and barriers that, if targeted, might improve social workers' abilities to meet a family's needs and we also provided some preliminary evidence for the reliability and validity of questionnaires designed to assess these constructs.