Identifying Key Domains and Implementation Challenges for a Live Discharge From Hospice Protocol.

Background: Hospice agencies lack an explicit live discharge process to guide practitioners in transitioning these patients and their primary caregivers (PCGs) out of hospice care. Based on previous research and input from an advisory committee, a live discharge protocol (LDP) was drafted with .three general areas of assessment: 1) concrete services; 2) psychosocial assessment; and 3) 30-day post discharge follow-up phone call. This study sought to gather perspectives from hospice social workers on the proposed assessment components and other needs in implementing a LDP. Methods: Purposive, convenience sampling occurred over 4 months. Participants were hospice social workers (n = 14) recruited through personal and professional contacts and social media. Four focus groups were conducted via Zoom. Data was analyzed using thematic analysis. Results: Three major themes appeared: 1) benefits and challenges of having a structured discharge protocol (n = 14); 2) need for specific LDP roles across team members (n = 11); and 3) education and clear boundaries for both patients/PCGs and professionals (n = 9). Conclusions: All three assessment components of the preliminary LDP were deemed necessary by participants; however, implementation challenges were both unique for each agency and reflective of the broader hospice culture. Further research is needed to measure the impact of the LDP.

Terminally ill African American elders' access to and use of hospice care.

The underuse of hospice care by terminally ill African American elders suggests they are suffering when hospice care could offer quality end of life care. Guided by the Behavioral Model for Vulnerable Populations, this study sought understanding of structural barriers faced when seeking access to hospice care and reasons for using it when access is possible. Data was collected through interviews with 28 African American hospice patients. Themes from directed content analysis provide insights into strategies used to overcome access barriers posed by income, health insurance and administrative procedure, as well as the role religion, family, information and health beliefs played in using it. Distributing educational materials and addressing spiritual/religious concerns in choosing hospice care are key in promoting African Americans' use of hospice care.

Terminally ill elders' anticipation of support in dying and in death.

This study explored terminally ill elders' anticipation of future support, which may be particularly important due to their vulnerable state and resulting support needs. Qualitative data was gathered from face-to-face interviews with 100 elders receiving hospice care; 85 of whom discussed anticipating future support. Content analysis revealed that anticipating support was based on current experiences of received support and that the definition of future extended beyond death for some who anticipated surviving loved ones receiving grief support. Not all anticipation of support evoked positive feelings. Some respondents anticipated receiving unhelpful support or felt guilty about anticipating support from overburdened caregivers. Implications are discussed regarding the role of social workers in working with caregivers to insure that the terminally ill elders they care for can anticipate future support in their dying process and after death.

Cancer information sources used by patients to inform and influence treatment decisions.

Previous research has indicated that treatment staff often underestimate the informational needs of cancer patients. In this study, the authors determined the total number of information sources obtained and used to influence treatment decisions, and the clinical and demographic factors associated with the use of specific sources of information in cancer patients. Participants were identified by the statewide cancer registry and diagnosed in 2004 with breast, colorectal, lung, or prostate cancer. A self-administered mailed questionnaire elicited cancer treatments, demographics, and information sources used to make treatment decisions. Of those surveyed, 1,784 (66%) participated and responded to all questions regarding information use. Over 69% of study participants reported obtaining information from a source other than the treatment staff. Significant predictors of using additional information sources included younger age, higher income, higher education, complementary and alternative medicine (CAM) use, and reporting shared decision making (all p values <.01). Participants with a college degree were more likely to use the Internet (OR 3.7; 95% CI 1.5-9.0) and scientific research reports (OR 3.3; 95% CI 1.6-6.9) to influence treatment decisions compared with those without a high school degree. Support group use to influence treatment decisions was not associated with socioeconomic variables but did vary by cancer type and CAM use. The sources of information study participants obtained and used to influence treatment decisions varied strongly by socioeconomic and demographic variables. These findings provide a deeper understanding of the information needs of cancer patients and have implications for dissemination strategies that can minimize disparities in access to cancer information.

Seeking to bridge two cultures: the Wisconsin Hmong cancer experience.

Compared to white non-Hispanics, Hmong report higher incidence rates of certain cancers and present at an advanced stage. Using a community-based participatory research approach, Hmong leaders partnered with academic researchers to assess the Wisconsin Hmong population's readiness to address cancer. Using the Colorado Tri-Ethnic Center's Community Readiness Assessment, face-to-face interviews were conducted with eight Hmong leaders. The stage of readiness to address cancer was "Vague Awareness". Six thematic areas provided insight into this stage and recommendations for effective intervention. Results emphasize the need for a bridge between Hmong and mainstream communities to provide basic, culturally appropriate education on the US healthcare system and cancer.

The myriad strategies for seeking control in the dying process.

PURPOSE: This study explored the role control plays in the dying process of terminally ill elders by investigating the aspects of the dying process over which they seek to exercise control, the strategies they use, and whether they desire to exercise more control. DESIGN AND METHODS: In-depth face-to-face interviews were conducted with 84 terminally ill elders receiving hospice care. Directed and conventional content analysis methods were used to identify main themes and patterns. RESULTS: The results revealed that all 84 elders were using at least 1 primary control strategy in their dying process, 83 of whom did so in combination with another primary or compensatory secondary control strategy. Decision making, independence, mental attitude, instrumental activities of daily living, activities of daily living, and relationships were aspects of the dying process over which the respondents sought to exercise control. Over half of the respondents wanted more control; however, they felt their illness prevented it. IMPLICATIONS: The findings highlight the importance of terminally ill elders' having opportunities to exercise control in their dying process. Practitioners need to ensure that these opportunities exist and to be aware that elders are adaptive and use multiple strategies in exercising control.

A community-specific approach to cancer research in Indian country.

BACKGROUND: Health care leaders in a small, rural, American Indian community and university partners used the community-based participatory research (CBPR) method to survey cancer survivors. OBJECTIVES: We sought to provide support for the use of CBPR to generate ideas for how to improve the detection and treatment of cancer in American Indian communities. METHODS: Partners worked together to develop a mail-out survey and send it to the Indian health clinic's patients who had cancer in the past 5 years. The survey sought information on their experiences with cancer screenings, cancer diagnoses, and accessing and receiving cancer treatment. RESULTS: Community leaders identified three priority areas for intervention: (1) high incidence of breast cancer; (2) lack of culturally appropriate cancer education; and (3) need for a more in-depth assessment. CONCLUSIONS: CBPR's partnership principle allowed for results to be viewed within the community's context, availability of community resources, and relevant cultural beliefs and traditions.

Social relationships and their role in the consideration to hasten death.

PURPOSE: This study explored the quality and functioning of terminally ill elders' social relationships and their impact on elders' consideration to hasten death. DESIGN AND METHODS: In-depth, face-to-face interviews were conducted with 96 terminally ill elders. Logistic regression was used to determine whether aspects of social relationships significantly predicted the consideration to hasten death. The qualitative data was content analyzed to identify main themes and patterns. RESULTS: Logistic regression revealed that conflictual social support was a significant predictor of the consideration to hasten death. Qualitative data provided insight into findings that responsibilities to loved ones or direct verbal attempts did not deter elders' consideration to hasten death. IMPLICATIONS: This research highlights the importance of quality social support in elders' consideration to hasten death and exhibits the need for practitioners to assess thoroughly the quality of elder-caregiver relations.

Critical events in the dying process: the potential for physical and psychosocial suffering.

BACKGROUND: Understanding what aspects of the dying process motivate terminally ill individuals to consider hastening their death, can lead to improving end-of-life care. OBJECTIVE: Advance knowledge regarding critical events within the dying process that have the potential to give rise to physical and psychosocial suffering such that an elder wishes for or considers a hastened death. DESIGN AND METHODS: Face-to-face in-depth qualitative interviews conducted with 96 terminally ill elders, 15 of whom discussed an event in their dying process that resulted in suffering so great they wished for, or considered, a hastened death. Data were content analyzed to identify and categorize the main themes and patterns involved in these elders' experiences. SETTING: The interviews were conducted on palliative care hospital units, and in outpatient clinics, free standing hospice facilities, and home hospice. RESULTS: Four critical events emerged: perceived insensitive and uncaring communication of a terminal diagnosis; experiencing unbearable physical pain; unacknowledged feelings regarding undergoing chemotherapy or radiation treatment; and dying in a distressing environment. Respondents discussed physical and/or psychosocial suffering that occurred at these events, and the end-of-life care practices that reduced their suffering. CONCLUSION: Awareness of events common to the dying process, the potential physical and psychosocial suffering that may arise at these events, and the end-of-life care practices associated with reducing that suffering can lead to health care professionals being able to take a proactive rather than reactive approach to end-of-life care.

Mind frames towards dying and factors motivating their adoption by terminally ill elders.

OBJECTIVE: This study was designed to advance the understanding of the physical and psychosocial factors that motivate terminally ill elders not only to consider a hastened death but also not to consider such a death. METHODS: I conducted face-to-face in-depth qualitative interviews with 96 terminally ill elders. An inductive approach was taken to locating themes and patterns regarding factors motivating terminally ill elders to consider or not to consider hastening death. RESULT: Six mind frames towards dying emerged: (a) neither ready nor accepting; (b) not ready but accepting; (c) ready and accepting; (d) ready, accepting, and wishing death would come; (e) considering a hastened death but having no specific plan; and (f) considering a hastened death with a specific plan. From the data emerged approaches towards dying and accompanying emotions characterizing each mind frame, as well as factors motivating their adoption by elders. The results showed that psychosocial factors served more often than physical factors as motivators. DISCUSSION: The results demonstrate the importance of assessing the mind frame adopted by a terminally ill elder and his or her level of satisfaction with it. Terminally ill elders may experience a higher quality dying process when a traditional medical care approach is replaced by a holistic approach that addresses physical, spiritual, emotional, and social needs.