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

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.

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