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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.

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

Care homes play a major role in supporting people with dementia at the end of their lives. Seeking to understand the views of staff on the care they provide, Nicola Wheeler and Jan R Oyebode held focus groups with a range of staff in nine care homes in the West Midlands. Here they discuss their findings and implications for practice.

Yes / To evaluate a 24/7, nurse led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven. Method: Activity and other data recorded at the time of calls were analysed. Interviews with 13 participants captured patients and carers perspectives. Results: Between April 1st 2014 and March 31st 2015, 4648 patients were registered on the Gold Line. 42% had a non-cancer diagnosis and 46% were not known to specialist palliative care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were received from 1813 individuals. 39% of the 5106 calls were resolved by Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance and the importance of practical advice. Conclusion: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and their cares. The line enabled them to feel supported and remain in their place of residence, reducing avoidable hospital admissions and use of other services. Providing this service may encourage health care professionals to identify patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services. / Health Foundation adn Shared Purpose

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