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This study explores the experiences of retirement village residents as they move from an independent to a supported living environment within a retirement village. It focuses on residents’ perceptions of their transitions and adopts a qualitative approach to understand the nature of their transitions and the way in which they are experienced. A grounded theory framework is used in order to capture the meanings that participants apply to concepts such as home, and to the physical, social, personal and veiled spaces in which they live. The findings from the study reveal that as residents’ health fails, the impact of increasing dependence is such that their sense of social and personal autonomy is gradually eroded. The research also provides insights into residents’ expectations and fears surrounding end of life. In many ways the experiences of the residents in supported living environments do not differ greatly from those of residents in any aged care facility. One major finding of this research, however, is the debilitating impact on well-being that occurs as a consequence of these transitions from independent to supported living, taking place within one physical location – the retirement village – a physical space which promises prospective residents the opportunity for active and positive ageing.

This study explores and examines the roles of caregivers within rest home facilities in New Zealand; and specifically, how they unpack and deal with managing the tensions associated with end of life (EOL) care. It adopted a qualitative perspective to enable an exploration of how the experiences of caregivers help guide their practice and understanding of their roles in relation to EOL care. A grounded theory framework was utilised in order to explore how caregivers make meaning and find value in the roles they perform within rest home facilities. This study offers insights into some of the tensions that caregivers face in a working environment where life and death occur simultaneously. It was apparent that caregivers are aware of the many social taboos they must negotiate in order to conduct their work. It was also apparent that they understood that others might perceive their work as dirty but that this did not prevent them from finding job satisfaction and create meaning in their work. Instead, they created meaning by using the conceptual tool the imagination of care. This involved utilising their imagination and past experiences to enable EOL care which represented the dying rites of individual residents but also fitted within their ethic of care.

As the population of the United States continues to age, providing this ever-growing group of individuals with end of life care is becoming an increasingly important issue. Quality end of life care begins with understanding the distinct needs and desires of each individual, and the best way to ensure that their wishes are followed is through the completion of advance directives. Although many Americans understand the importance of completing advance directives, the most vulnerable members of our society, the homeless, are often not given the opportunity to document their end of life wishes. In addition to dealing with the demands of everyday life on the street, homeless individuals are often disconnected from the healthcare system, and therefore they frequently miss out on the opportunity to partake in advance care planning. As this population ages, their end of life care is becoming ever more important. Studies have shown that homeless individuals are willing and able to fill out advance directives when they are given the opportunity, but in today’s busy healthcare system medical providers often do not have the time to assist each of their patients with completing an advance directive. Fortunately, nursing and medical students have proven that they can successfully assist homeless individuals in filling out advance directives, although the success of physician assistant students in providing this intervention has yet to be studied. This thesis will propose a new educational intervention designed to teach physician assistant students about advance care planning as well as giving them the opportunity to assist homeless individuals in completing advance directives. The curriculum will provide an innovative way of fulfilling educational standards set forth by the Accreditation Review Commission on Education for the Physician Assistant, and it can be adapted for physician assistant programs throughout the nation. As a result, physician assistant students will graduate with the confidence and skills necessary to provide advance care planning to all of their patients.

Older adults with dementia are at increased risk of becoming incapable of making their own decisions and may therefore benefit from planning for care at the end-of-life. Advance care planning (ACP) is a complex, multifaceted process by which people can express their wishes about care at the end-of-life in case they become incompetent to make decisions for themselves. However, we have little understanding of the ACP process among people with dementia and their families. This study addressed three questions: 1) when and how to cognitively impaired older adults and their families receive information about ACP; 2) in which aspects of the ACP process do families of cognitively impaired older adults engage, and why (and does this fit within the framework of the transtheoretical model of behaviour change [TTM]); and 3) how ACP relates to the way in which family members perceive the quality of death of their loved one. 22 family members of deceased older adults with dementia were interviewed and data was analyzed using interpretive description qualitative methods. Participants reported that information about ACP is provided in a haphazard and often incomplete manner, leading to difficulty engaging in the ACP process. Older adults were in various stages of readiness to engage in ACP behaviours, with most only engaging in a subset of ACP behaviours. Although ACP was viewed as beneficial by participants, several barriers were identified that prevented people with dementia from dying in a way that was aligned with previously-expressed wishes. Implications for the practice of clinical neuropsychology and implications for policy on ACP are discussed. / Graduate

End of life planning is an essential component of complete care for patients established in a primary care clinic. Family medicine clinics, where treatment begins with birth and ends with death, it is imperative for clinicians both seasoned and new have the knowledge and resources available to ensure effective discussion of this complex subject. Surveys across the country of both patients and providers show that anywhere between 5-25% of patients have an advanced directive filled out and on file. Furthermore, most patients report a preference for holding this discussion with their established primary care physician. Numerous barriers have been identified in previous surveys and studies that tend to limit this discussion in the primary care setting in the academic and private sector. By identifying these barriers and providing possible solutions, primary care providers should be able to more effectively facilitate and navigate a discussion about end of life care. We designed a quality improvement project for family medicine residents in an effort to identify location specific barriers and to provide an educational didactic session which is aimed at overcoming these barriers. A survey was designed to be filled out by participates prior to the presentation to measure baseline comfort and understanding of advanced directives. The same survey was administered after the presentation to measure the effectiveness of the presented didactic. Statistical analysis of these two surveys will be completed and reviewed. The expected outcome is that participants in the session leave with an improved comfort with the subject of advanced directives and end of life planning. Participants are expected to have increased knowledge of available resources that can be utilized during these discussions. By providing this session to both residents and supervising physicians, the hope is that an increase in documented advanced care directives will be seen at the family medicine clinic. If this session is found to be an effective tool to address the identified barriers to end of life planning, it may be suitable to extend throughout the family medicine department at East Tennessee State University. Following this didactic session, multiple residents reported utilizing resources that were presented during discussions, with patients in regards to end of life planning and advanced care directives.

The purpose of this paper was to determine the most important changes needed to improve the quality of end-of-life (EOL) care to terminal cancer patients as perceived by experienced oncology nurses. The study was designed as a cross-sectional survey, sampling 1,000 Oncology Nursing Society members from the United States with experience caring for inpatient cancer patients, who could read English, and had experience in EOL care. Eligible nurses responded to an open-ended item sent to them as part of a mailed questionnaire. Nurses were asked to respond to the following question: “If you had the ability to change just one aspect of the end-of-life care given to dying oncology patients, what would it be?” Open-ended text answers were categorized and coded by a team of four nurse researchers. Respondents identified five major and six minor themes they determined as requiring interventions to improve the dying experience for their patients. Major areas identified included better staffing, improvement to the environment, increased education, improvement in issues surrounding physician behaviors, and earlier EOL interventions. Minor areas reflected needs to facilitate a more peaceful death, initiate earlier palliative and hospice interventions, end care deemed futile, and provide for spiritual needs. The suggested improvements shared by shared by oncology nurses provide opportunities to identify and alleviate obstacles in EOL care which may prevent optimal patient quality of life when dying. Improving care in the identified areas may address the many needs of dying oncology patients as nurses become better able to facilitate a quality experience at the end of life.

Thesis (M.S.P.H.) PLEASE NOTE: Boston University Libraries did not receive an Authorization To Manage form for this thesis or dissertation. It is therefore not openly accessible, though it may be available by request. If you are the author or principal advisor of this work and would like to request open access for it, please contact us at open-help@bu.edu. Thank you. / BACKGROUND: As critically ill patients approach the end of life in an intensive care unit (ICU), their families are often asked to make difficult decisions surrounding the withholding or withdrawal of aggressive care or resuscitative measures. Families are asked to exercise “substituted judgment” by making decisions from the imagined standpoint of the patient. ICU physicians work with families to support them through the decision-making process, but conflict commonly arises between physicians and family members regarding the optimal course of care for a critically ill patient. Existing qualitative data regarding physician perspectives and practical approaches to negotiating and managing these conflicts is limited. OBJECTIVE: To investigate and characterize how critical care physicians approach and manage conflict with surrogates with respect to decisions on withdrawing or withholding aggressive care in the ICU. METHODS: Semi-structured interviews were conducted with eighteen critical care physicians, recruited from two large academic medical centers in Boston. Interview transcripts were analyzed using methods of grounded theory to identify emergent themes and concepts, along with illustrative quotes. RESULTS: Physicians described an initial process of gauging surrogate receptiveness to provider input and recommendations. When faced with resistance to their recommendations for less aggressive care, provider approaches ranged from deference to family wishes to various negotiation strategies designed to change families’ minds. The likelihood of deferring to family in the event of conflict was associated with the perceived sincerity of the family’s “substituted judgment” approach and the ability of the provider to manage patient pain and suffering. Providers described a common theme of concern for the family’s emotional needs; manifestations of this concern included efforts to alleviate guilt and stress associated with end-of-life decision-making by assuming some of the decision-making burden and strategies to repair damage to the provider-family relationship in the aftermath of conflict or disagreement. Providers also described personal stress and anxiety associated with contentious end-of-life decision-making, and the effect of career experience on their approach to conflict with families. CONCLUSIONS: Critical care physicians describe a multi-layered approach to physician-family conflict surrounding end-of-life decision-making in the ICU, including adaptive strategies to achieve optimal outcomes for both patient and family. These findings may help to inform future research and quality-improvement initiatives. / 2031-01-01

Yes / Background: Recruitment of patients with advanced cancer into studies is challenging. Objective: To evaluate recruitment methods in a study of pharmacist-led cancer pain medicines consultations and produce recommendations for future studies. Method: Two methods of recruitment were employed: 1) community-based (general practitioner computer search, identification by general practitioner, community pharmacist or district nurse and hospital outpatient list search), and 2) hospice-based (in and outpatient list search). Patients identified in method 1 were invited by post and in method 2 were invited face-to-face. Information was designed in collaboration with patients and carers. Results: 128 patients were identified (85 from the community and 43 from the hospice), 47 met the inclusion criteria. Twenty-three agreed to take part and 19 completed the study, 17 of whom were already under specialist palliative care. Recruitment rates were 7% for community-based methods and 40% for hospice. The recruitment methods differed in intensity of resource use. Recruitment via letter and a lack of engagement by healthcare professionals were found to be barriers. Facilitators included the researcher having personal involvement in recruitment. Conclusion: The overall recruitment rate was in line with other studies for this patient cohort. Attempts to identify and engage patients through community-based postal contact were less effective than where personal contact with patients was both possible and occurred. Methods were less successful at recruiting patients who were not already engaged with hospice services. / Programme Grants for Applied Research. Grant Number: RP-PG-0610-10114

The rise in American pediatric death led to a shift in pediatric end-of-life care from focusing care only on the dying pediatric patient to include focus on the family. Most literature has focused only on mothers’ experiences or the combined experiences of mothers and fathers. Fathers’ experiences at their child’s end of life, as an individual phenomenon, is overlooked and ignored. Hence, significant knowledge gaps exist related to the repeated exclusion of fathers’ individual experiences. This study aimed to begin to fill this gap. Using the lens of Merleau-Ponty, this existential phenomenological study aimed to describe the lived experiences of fathers who have experienced their child’s end of life. Using an unstructured interview process, a total of eight fathers participated in one-on-one interviews via Zoom or telephone. Data analysis and interpretation was conducted using an iterative analytic process, whereby transcripts were read and examined line-by-line to identify figural themes against the ground. Merleau-Ponty’s existential grounds of time, body, others, intentionality, and perception are interwoven throughout fathers’ individual stories. The following four themes emerged: (a) “I done been through hell”, (b) “I felt helpless”, (c) “I’m a protector”, and (d) “Who is there to help me?”. Additionally, five subthemes describing fathers’ emotional pain, forgetfulness, and masculine inabilities emerged. Greater understanding of fathers’ lived experiences requires serious attention and more research is needed. There are implications that have the potential to impact nursing care and the creation of meaningful nursing interventions for fathers at their child’s end of life.