As technological and medical advances have allowed for more effective medical treatment of individuals in the United States, many patients live extended periods of time with progressive, and, often, co-morbid chronic illnesses. This in turn leads to exponentially higher numbers of patients requiring end of life care within hospice and palliative care systems. Few individuals in any healthcare profession choose to specialize in end of life care, and education and training in this field are not integrated sufficiently into general professional training. As such, the general health care workforce is not being prepared in the basic competencies in working with patients at the end of life. The most promising avenue for end of life care is in integrated delivery systems that operate with the goal of coordinating palliative and hospice care across settings to provide comprehensive advocacy, information, assistance, and management from diagnosis through disease progression and end of life to bereavement care. Two national systems have established the most progressive and integrated approaches to end of life care: the Veteran's Administration (VA) health system and the United States Department of Corrections and Federal Bureau of Prisons health systems. To meet the complex goals of end of life care, a multidimensional, integrated approach with multiple health care professionals, including psychologists, must be applied. Of professionals currently providing end of life care as part of an integrated team, psychologists have been notably absent. Little evidence suggests that mental health oriented disciplines have considered end of life issues to be an important area. More troublesome is the evidence that other professions do not generally view psychologists as central to end of life decision-making and care. The process of dying, from diagnosis to death, is a complex phenomenon causing physical, psychological, existential, interpersonal, and spiritual distress. No profession is better equipped to working with this complexity at the individual, provider, and system levels than psychologists. Grounded in the review of current end of life care models and protocols, a proposal for the potential role of the psychologist will be defined at patient, family, and system levels including roles within provision of care, the healthcare team, providing education, research and program development. Psychologists have the ability to transform the way we care for people at the end of their lives because of the unique skills and expertise the profession can add to the existing foundation of care.

Introduction: Caring for dying patients is part of working in a rural emergency department. Rural emergency nurses are prepared to provide life-saving treatments but find there are barriers to providing end-of-life (EOL) care. This study was completed to discover what the size, frequency, and magnitude of obstacles were in providing EOL care in rural emergency departments as perceived by rural emergency nurses. Methods: A 58-item questionnaire was sent to 52 rural hospitals in Idaho, Wyoming, Utah, Nevada, and Alaska. Respondents were asked to rate items on size and frequency of perceived barriers to providing EOL care in rural emergency departments. Results were compared with results from two previous emergency nurses' studies to determine if rural nurses had different barriers to providing EOL care. Results: The top three perceived obstacles by rural emergency nurses were: 1) family and friends who continually call the nurse wanting an update on the patient's condition rather than calling the designated family member; 2) knowing the patient or family members personally, and 3) the poor design of emergency departments which do not allow for privacy of dying patients or grieving family members. The results of this study differed from the other two previous studies of emergency nurses. Discussion: Nurses in rural emergency settings often work in an environment without many support personnel. Answering numerous phone calls removes the nurse from the bedside of the dying patient and is seen as a large and frequent obstacle. Personally knowing either the patient or members of the family is a common obstacle to providing EOL care in rural communities. Rural nurses often describe their patients as family members or friends. Caring for a dying friend or family member can be intensely rewarding, but can all so be very distressing. Conclusion: Rural emergency nurses live and work on the frontier. Little EOL research has been conducted using the perceptions of rural emergency nurses possibly because of the difficulty in accurately accessing this special population of nurses. Rural emergency nurses report experiencing both similar and different obstacles as compared to their counterparts working in predominately urban emergency departments. By understanding the obstacles faced by emergency nurses in the rural setting, changes can be implemented to help decrease the largest barriers to EOL care which will improve care of the dying patient in rural emergency departments. Further research is also required in the area of rural emergency nursing and in EOL care for rural 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

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No / People with dementia need increasingly specialised support as they approach the end of life, and so too do their families and the professionals working with them. This book describes not only what can be done to ensure maximum quality of life for those in the final stages of the illness, but also how best to support those involved in caring for them. Emphasising the importance of being attuned to the experiences and needs of the person with dementia, the authors explain why and how they should be included in decisions relating to their end of life care. Practical strategies for ensuring physical and emotional wellbeing are provided, drawing on useful examples from practice and providing solutions to potential challenges that carers and family members will face. Dilemmas surrounding end of life care are explored in detail, including the moral dilemma of medical intervention, and the authors suggest ways of supporting family members through the process in terms of providing information, helping them adjust to change and loss, and involving them in their relative's care, and at how care staff can be supported through appropriate education and training, team building and information-giving.

Yes / Objective: 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

Yes / Introduction: Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. Methods and analysis: To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme. Ethics and dissemination: Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested. / Marie Curie Cancer Care