This scoping review contains a literature analysis regarding interventions used by health care workers to alleviate guilt in caregivers of patients during end-of-life care. During end-of-life care, many transitions and decisions are made that add to the burden of caregivers. Family caregivers experience many physical, financial, and emotional stressors during the journey of end-of-life care, and this can result in guilt. Feelings of guilt can lead to poorer health outcomes and coping in family caregivers and should be addressed by health providers. In this scoping review, a literature search was conducted using various key terms like "guilt," "hospice," "end-of-life care," "interventions," and "caregivers." The articles that fit the criteria were examined to find tested interventions to alleviate guilt in family caregivers of patients in end-of-life or hospice care. A total of 13 articles were analyzed and divided into three sections, interventions that directly influence guilt, interventions that indirectly influence guilt, and interventions recommended by caregivers and hospice workers. Main themes that emerged for tested and recommended interventions include shared decision making, increased communication with health care providers, increased education on disease process and available options, and an emphasis on caregiver self-care. This research is limited and can provide the framework for future interventions to be tested and applied to the care of family caregivers experiencing guilt while caring for or grieving their loved one.

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Background: The Critical Access Hospitals (CAHs) system was developed to bring health care to rural populations. Although CAHs lack equipment and resources, CAH nurses still provide end-of-life (EOL) care to critically-ill and dying patients. Objectives: To determine the largest and smallest ranked obstacles and helpful behaviors to providing EOL care to rural patients as perceived by CAH nurses. Also, to determine how CAH nurses' perceptions of obstacles and helpful behaviors to providing EOL care compare to that of their urban counterparts. Methods: A cross-sectional, nationally representative sample of nurses working in 39 CAHs were sent a questionnaire. Nurse participants were asked to rate obstacle and helpful behavior item sizes to providing EOL care to critically-ill patients. Current data were analyzed and compared with previously collected data obtained from urban-working critical care nurses. Results: Seven of the top 10 largest obstacle items were related directly to family behaviors and attitudes such as families not understanding what lifesaving measures entail and intra-family disagreements about life support. Largest helpful behavior items ranked in the top 10 included interventions which the nurse controls and items that impacted nurses having adequate time to deliver EOL care. The majority of the top 10 largest obstacle and helpful behavior items from the 2015 study, as ranked by urban critical care nurses, remained in the top 10 for the current study. Obstacle and helpful behavior items unique to CAHs such as a lack of resources and the nurse knowing the patient or patient's family fell below the top 10 largest items in ranking. Conclusion: As perceived by nurse participants, obstacles and helpful behaviors to providing EOL care remain similar despite location (rural versus urban). CAH nurses are accustomed to working without typical resources found in urban hospitals and therefore did not perceive resource deficits to be among the largest-ranked obstacles to providing EOL care. Family behaviors and attitudes remain the most dominant obstacle noted by nurses.

Death is inevitable, and research indicates that 80% of Americans wish to die at home. Does anyone know those wishes? Advance directives outline those wishes and personal decisions. Do advance directives make a significant difference in the experience of death for the patient, loved ones, and clinicians? Through interviews with loved ones of those who have died, as well as legal representative and a physician, this thesis examines the benefits and obstacles of having an advance directive, as well as the issues that have a high impact on whether and why an advance directive is written. Policy recommendations, business tactics, and community-based solutions are proposed to address these issues. It is clear that access to healthcare and the clinical professionals who can discuss end of life issues has a major impact on whether an advance directive is considered by the patient, along with health literacy skills and knowledge. / Urban Bioethics

Background: Place of death is a commonly reported indicator for assessing palliative care quality, but does not provide details of healthcare service utilization at the end-of-life, such as acute care. In particular, early palliative care has shown to reduce acute care service use, but findings are mostly limited to cancer patients with few population-based data available. Objectives: The purpose of this research is to: 1) explore place of care trajectories in the last 2 weeks of life in a general population and among distinct illness cohorts, and 2) investigate whether early versus late palliative care affects acute care use and other publically-funded services in the last 2 weeks of life. Research Design: A retrospective population-based cohort study using linked administrative health data to examine all Ontario decedents between April 1st, 2010 and December 31st, 2012. Methods: Descriptive statistics were used to examine place of care trajectories and service utilization trends in the last 2 weeks of life. Multivariable logistic regression analyses were conducted to assess in the 2 weeks before death: 1) the odds of using an acute care setting (yes/no), and 2) the odds of time spent (≤1 week or >1week) in acute care settings among users. Results: Overall, 235,159 decedents were identified. About 32% had cancer, 31% had organ failure, and 29% had frailty. Overall, 29% of decedents used a hospital two weeks before death, but this increased to 61% on the day of death. Those with cancer were the largest users of palliative-acute hospital care, while those with organ failure were the largest users of acute- hospital care. Assessing palliative care timing, 27% were early palliative care recipients, 13% were late. About 45% of early recipients had a community-based palliative care initiation, 74% of late recipients had a hospital-based initiation. Late recipients were more likely to use acute care settings; this was further modified by disease: comparing late to early recipients, cancer decedents were nearly two times more likely to spend >1 week in acute care settings (OR=1.84, 95%CI:1.83-1.85), frailty decedents were three times more likely (OR=3.04, 95%CI:3.01-3.07), and organ failure decedents were four times more likely (OR=4.04, 95%CI:4.02-4.06). Conclusion: Place of care trajectories differ greatly by disease cohort. Exploring place of care trajectories can provide details not evident when reporting solely place of death. Furthermore, early palliative care was associated with reduced acute care service use in cancer and non-cancer patients. Late initiations were associated with greater acute care use, and had the largest effect on those with organ failure and frailty, suggesting potential opportunities for improvement in non- cancer populations. / Thesis / Master of Science (MSc)

Bakgrund: Cancer är den näst vanligaste dödsorsaken globalt och stod för uppskattningsvis 9,7 miljoner dödsfall år 2022. När cancersjukdomen inte längre går att bota övergår vården till palliativ vård för att sedan övergå till vård i livets slutskede, en livsomvälvande övergång som drabbar både den sjuke och hens närstående. Närstående utgör en viktig del i det palliativa förhållningssättet och kan användas som en resurs vid vård i livets slutskede. Trots detta finns det flera studier som belyser att så inte är fallet och att närstående har varierande upplevelser av hur det är att ha en familjemedlem i livets slutskede.Syfte: Syftet med denna studie var att undersöka närståendes upplevelser när en familjemedlem vårdas i livets slutskede.Metod: En allmän litteraturstudie innehållande 15 kvalitativa studier identifierade från databaserna PubMed, CINAHL och PsycINFO. Samtliga inkluderade studier har analyserats utifrån en induktiv innehållsanalys. Resultat: Den genomförda dataanalysen resulterade i fyra huvudkategorier som belyser närståendes upplevelser när en familjemedlem befinner sig i livets slutskede: Behov av information, psykisk påverkan, relationers påverkan och kontrollförlust.Slutsats: Det framkom att majoriteten av deltagarna i de inkluderade studierna upplevde i regel den palliativa vården som tillfredsställande och beskrev ofta goda relationer med vårdpersonalen. Trots detta beskrev närstående till patienter som vårdades i livets slutskede ofta situationerna som påfrestande vilket utgjorde en ökad risk för psykiska, sociala och existentiella bekymmer och utmaningar i varierande grad. Det framkom att relationen till vårdpersonalen hade en betydande roll för att förebygga och underlätta dessa problem. / Background: Cancer is the second most common cause of death globally and was responsible for an estimated 9.7 million deaths in 2022. When cancer no longer can be cured, care switches to palliative care and lastly it turns to end-of-life care, a life-changing transition which affects both the patient and their relatives. Relatives are an important part of the palliative approach and can be used as a resource in end of life care. Despite this, there are several studies that highlight that this is not the case and that relatives have varying experiences of what it is like to have a family member at the end of life.Aim: The aim of this study was to investigate relatives’ experiences of when a family member is cared for at the end of life.Method: A general review containing 15 qualitative studies identified from the databases PubMed, CINAHL and PsycINFO was used. All included studies were analyzed based on an inductive content analysis.Results: The data analysis resulted in four main categories that highlight the experiences of relatives when a family member is at the end of life: Need for information, psychological impact, the impact of relations and lack of control.Conclusion: It emerged that the majority of the participants in the literature study generally experienced the palliative care as satisfactory and often described good relationships with health care personnel. Despite this, relatives of family members who were cared for at the end of life often experienced a great sense of responsibility, which represents an increased risk for psychological, social and existential concerns and challenges.

Yes / The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population. Methods/design This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage. Discussion This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

No / Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers—an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.