Introduction: In 2010, of the 129 million visits to the emergency department (ED), 240,000 resulted in the patient dying or being pronounced dead on arrival. This number is likely to continue to increase as a significant portion of the American population ages and seeks care in the ED. Though care in the ED is focused on saving lives, death cannot always be prevented. Consequently, nurses face many barriers to providing quality end-of-life (EOL) care in the ED when death occurs. The purpose of this study was to identify suggestions emergency nurses have to improve EOL care specifically in rural ED's. Methods: A 57-item questionnaire was sent to 52 rural hospitals in the Intermountain West and Alaska. One of the 57 questions asked nurses to identify the one aspect of EOL care they would change for dying patients in the ED. Each qualitative response was individually reviewed by a research team and then coded into a theme. Results: Four major themes and three minor themes were identified. The major themes were providing greater privacy during EOL care for patients and family members, increasing availability of support services, additional staffing, and improved staff and community education. Discussion: Providing adequate privacy for patients and family members is a major barrier to providing EOL care in the ED. This is largely due to poor department design, especially in rural ED's where space is limited. Lack of support services such as religious leaders, social workers, and additional staffing are also barriers to providing quality EOL care in rural ED's. Consequently, rural nurses are commonly pulled away from EOL care to perform ancillary duties because additional support personnel are lacking. Conclusion: Providing EOL care in the ED is an extremely challenging and demanding task. It is especially difficult in rural ED's where staffing and resources are limited. Consequently, it is imperative that supportive behaviors are acknowledged and barriers are identified to improve EOL care provided to patients and family members in rural ED's. Due to the current lack of research in rural EOL care, further research is justified regarding this topic.

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.

Syftet med det här examensarbetet är att presentera process och erfarenheter från mitt konstnärliga musikproduktionsprojekt som genomförts under mitt sista år av min masterutbildning. Genomförandet har bestått av att skapa ett svenskt popmusikalbum där låtar har skapats enskilt, genom samarbeten och tre verk har blivit slutförda och distribuerats på streamingtjänster så som Spotify och YouTube. Vidare är syfte att presentera en modell med hjälp av mitt konstnärliga arbete där det prövas potentiella omformuleringar för yrkesroller inom låtskapande. Dessa termer ska i sin tur underlätta rolldefinition inom låtskapande och även ge utrymme för att förtydliga den ideella rätten som medverkande i ett konstnärligt verk har. Med utgångspunkt till att musikproducenten ofta hamnar i en multikompetent position så har jag valt att låna begrepp från systemutvecklarens yrkesvärld för att skapa modellen. Begreppen jag valt att låna består av back-end, front-end och full-stack och avsikten är att bryta upp paraplybegrepp såsom ”låtskrivare, producent och performer” och även kunna bidra till tydligare rekryteringsprocesser för samarbeten inom låtskapande. / The purpose of this master’s thesis is to present the process and experiences of my music production project that was carried out during the last year of my masters’ studies. The project’s creative content is a Swedish pop album which created through collaborative and independent work. Three single releases and one music video have been released and distributed through the course of the project on streaming platforms such as Spotify and YouTube. In addition to the making of the album I have chosen to create a model to use as a frame for potential recruitment instances of creative collaborations, improve role definition and develop a more accurate method to credit rights holder’s moral credentials as a contributor to an artistic work. The root cause of this model is that a music producer often finds themselves as a multicompetent keyperson in creative collaborations where the lines between different professions overlap. The model is inspired of the software developers job terminology and aims to break up umbrella concept roles such as “songwriter, producer and performer” to facilitate the recruiting process of creative collaborations within the crafting of songs. The terminologies inspired out of the software developer’s professions are back-end, front-end and full-stack.

Uremic pruritus remains one of the most frustrating and potentially disabling symptoms in patients with endstage renal disease. It affects up to 90% of patients on dialysis. Several hypotheses have been postulated for the possible underlying etiology, but none is conclusive. Aside from kidney transplantation, which is the only definitive treatment, therapeutic approaches have largely been empirical, and no firm evidence-based treatments are available. The main goal of therapy remains to minimize the severity of pruritus and improve the quality of life especially among those who are not transplantation candidates or are waiting for surgery.

Background. Recent efforts have focused on improving pediatric palliative care to relieve physical and psychological suffering throughout the course of illness, as well as to improve care at the end-of-life (EOL). One area of attention has been medical training, as healthcare providers have often reported feeling ill-equipped to manage EOL issues. As a pilot study, we developed and evaluated a daylong educational workshop on pediatric palliative care for oncology fellows. Procedure. Fellows (N = 32) from 20 hospitals participated in one of two workshops covering palliative care topics, such as pain/symptom management, communication, ethics, and bereavement. Training, knowledge, behavior, and attitudes regarding pediatric palliative care were assessed before the workshop, and knowledge was re-assessed immediately afterwards. Results. Fellows reported a general lack of training in EOL care, and only 41% rated their education as at least "somewhat" adequate. Colleagues and personal experience were more often sources on EOL care, rather than formal classes or textbooks. Although fellows reported open attitudes toward palliative care, such as involving adolescents in decision-making, only half felt comfortable in the presence of a dying person. Fewer than half felt comfortable providing EOL care, managing families' expectations, or knowledgeable enough to discuss hospice with patients/families. Following the workshop, knowledge of palliative care increased significantly from 75 to 85% correct. Conclusions. Fellows reported open beliefs about palliative care, but acknowledged weaknesses in their training and level of competence. The workshop showed efficacy in improving knowledge, but additional research is needed to evaluate larger educational initiatives and their long-term impact on clinical services and family satisfaction.

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

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.