Bakgrund: I Sverige avlider ca 90 000 personer årligen, varav cirka 80% är i behov av palliativ vård. Smärta är ett av de vanligaste symtomen för patienter i palliativ vård. Studier har visat att många personer dör med smärta trots ordinerade vidbehovsläkemedel. Syfte: Syftet med studien var att beskriva sjuksköterskors erfarenheter av smärtlindring till patienter på hospice. Metod: Semistrukturerade intervjuer genomfördes med fem sjuksköterskor på hospice. Intervjuerna transkiberades ordagrant och analyserades med kvalitativ innehållsanalys. Resultat: Analysen resulterade i fyra katergorier och elva underkategorier. Kategorierna var; bedöma behov av smärtlindring, arbeta i team för att lindra smärta, arbeta för smärtlindring och hantera känslor i arbetet. Konklusion: Bedömning av smärta med skattningsinstrument är viktigt för att kunna ge adekvat smärtlindring. Ökad kunskap om skattningsinstrument behövs för att dessa ska användas korrekt. Sjuksköterskor behöver ökad kunskap om farmakologiska och icke farmakologiska metoder för att lindra smärta. Ett välfungerande team med olika kompetenser ökar möjligheterna för adekvat smärtlindring. / Background: In Sweden, about 90,000 people die annually, of wich about 80% need palliative care. Pain is one of the most common symptoms for patients in palliative care. However, earlier studies have shown that many people die with pain despite prescrition of individual medications as needed. Aim: The aim of this study was to describe nurses´experiences with pain relief to patients in hospice. Methods: Semi-structured interviews were conducted with five nurses at the hospice. The interveiws were transcribed verbatim and analyzed with qualitative content analysis. Results: The ananlysis resulted in four categories and eleven subcatergories. The categories were; assess the need for pain relief, work in teams to relieve pain, work for pain relief and manage emotions at work. Conclusion: The use of pain assassment scales is important to provide adequate pain relief. Increased knowledge of assessment instruments is needed for these to be used correctly. Nurses need increased knowledge of pharmacological and non-pharmacological methods to relieve pain. A well-functioning team with different competencies increases the possibilites for adequate pain relief.

Though there is ample evidence in existing literature demonstrating racial inequity in end-of-life care, there is minimal examination of how the culturally mainstream values of hospice contribute to inequity and reduced access for nonwhite populations. This paper reviews participatory action research, interviews and chart reviews of nonwhite populations including African Americans, Latinx, Asians and Native Americans to determine what end-of-life values these groups report and how they differ from the values of hospice and western biomedicine. All of these groups reported unmet cultural needs with respect to hospice access ranging from differing communication style preferences to different religious beliefs to different ideas about what they dying process should look like. Contributing to these barriers was practitioner ignorance about cultural variance in end-of-life preferences, demonstrated by studies of physicians to identify barriers to effectively providing end-of-life care. To help foster better knowledge and understanding between practitioners and nonwhite patients whose cultural needs are not being met, I have created a value-assessment tool to add to the standard structure of end-of-life conversations. Using this tool with patients in end-of-life conversations could improve physician confidence in understanding the needs of patients and provide patients an opportunity to freely communicate their needs and therefore increase access to the hospice services that can meet those needs. / Urban Bioethics

Psychosocial support is said to be an inherent component of nursing care and a major focus of palliative care. Literature exists which outlines perceptions of the psychosocial needs of patients and how psychosocial support should be provided. However, there is a lack of empirical evidence on how psychosocial support is operationalised in practice. This study provides a valuable and substantial new contribution to the evidence on the psychosocial needs expressed by patients in a hospice ward and how nurses immediately respond to these needs within their everyday practice. A study gathering data via observations with matched interviews of patients and nurses, organisational, documentary, and demographic variables, was conducted over an eight month period. Thirty-eight nurses (registered and auxiliary) and 47 patients were included in a maximum variation sampling strategy. Data was analysed using constant comparative qualitative techniques. Patients expressed a wide variety of psychosocial needs, often only signalling them whilst receiving care for other reasons. Considering these needs in relation to Maslow’s (1943) hierarchy of needs suggests that in-patients more commonly express prerequisites to physiological care and ‘lower level’ safety needs rather than the more thoroughly researched and espoused ‘higher’ level psychosocial needs. The nurses reacted to these psychosocial needs with a range of responses which indicated a diminishing level of immediate support: ‘dealing’, ‘deferring’, ‘diverting’ and ‘ducking’. The majority of the nurses were observed using each of these responses at some point during data collection. A variety of the responses were used for each type and context of psychosocial need. These responses were influenced by the ward’s workplace culture. This study demonstrates a requirement for more thorough consideration of the true psychosocial needs of patients, which appear to vary dependent on the context of care. Consideration should be v given to workplace culture and its influence over psychosocial support, with nurses being supported to expand their response repertoire so that patients’ psychosocial needs are acknowledged more. Increasing nurses’ knowledge of the reality of psychosocial support through education and research will encourage formalisation of the place of psychosocial support in the planning, documentation and provision of care. This study shows that ward nurses can offer psychosocial support as an inherent component of their everyday work. Findings derived from this research indicate that developing an understanding of how patients express psychosocial needs in practice, through a consideration of Maslow’s (1943) hierarchy of needs, may increase recognition and support of psychosocial needs and enable nurses to respond more comprehensively.

The issue of death and dying affects everyone, it is not easy and yet a natural part of everyone's life. Hospice care offers help and support a dying man and his close on the last trip "home". This thesis describes the possibilities of a preparatory course for the volunteers who play an irreplaceable role in hospice care. The practical part describes the specific example from the conditions of the Czech home hospice - The Home Coming, which is being commented on the ground of literature and my personal experience. The outcome of the research is the feedback for the management of the home hospice - The Home Coming, including recommendations for changes of the preparatory course.

Thesis advisor: Kathleen McInnis-Dittrich / Cancer caregivers are key stakeholders across the cancer trajectory, particularly in the final weeks of life and the bereavement period that follows. Current measures are limited in capturing caregiver assessment of the quality of end-of-life (EOL) care. Because none include caregiver perception of patient suffering or prolongation of death, the author sought to develop and validate a new measure of caregiver-perceived quality of EOL care that includes these dimensions. Data for this study comes from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). CwC investigators interviewed cancer patients and caregivers prior to the patient's death, and then caregivers again following the patient's death, on a range of psychosocial issues related to EOL care and bereavement. The present study represents a refinement of the author's previous work in developing and validating the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a comprehensive measure of caregiver-perceived quality of EOL care. Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The author examined the new measure's factor structure, and evaluated its reliability (using Cronbach's α) and convergent validity (via associations between CEQUEL and key EOL outcomes). CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). Higher scores (indicating better perceived quality of care) were positively associated with therapeutic alliance (ρ=.13; p≤.05) and hospice enrollment (z=-2.09; ≤;.05), and negatively associated with bereaved caregiver regret (ρ=-.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z=-2.06; p≤.05). Scores did not vary by caregiver characteristics other than religious affiliation, with Catholics scoring lower than non-Catholics, and those without religious affiliation scoring lower than those with an affiliation. Models predicting CEQUEL scores were compared using multiple regression analysis and AICc values. In unadjusted analyses, dying in a hospital, inpatient hospice length of stay (LOS) < 1 week, patients feeling seen as a whole person by their physician, and caregiver religiosity predicted CEQUEL scores. Only dying in a hospital (B=-1.65, SE=0.42, p=0.000) and inpatient hospice LOS < 1 week (B=-1.87, SE=-.69, p=0.008) remained significant in adjusted analysis. These findings suggest that CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. This study also identifies key factors that can be modified to improve caregiver evaluation of quality of care and associated bereavement outcomes. CEQUEL is the first scale of its kind to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment. Implications for research, clinical practice and policy are discussed. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

Background and objective: Caring for critically-ill and dying patients is widely recognised as a central stressor in oncology and palliative-care staff. Past research in this area has mostly focused on medical staff, and the impact of patient deaths on other professionals has received only limited attention. This study aimed to explore how psychotherapists experience and cope with the death of the cancer patients in their care, and whether these experiences promote personal and/or professional growth. Methods: an exploratory sequential mixed-methods design was adopted. Participants were psychotherapists working with adult cancer- and palliative-care patients within UK hospices. In the qualitative phase, seven semi-structured interviews were conducted and examined using thematic analysis. In the quantitative phase, 28 participants completed an online questionnaire designed to evaluate the incidence within the target population of the themes identified in the qualitative phase. Findings: Grief appeared as hospice psychotherapists' main immediate response to client deaths. Participants used coping strategies aiming to facilitate emotional closure, and to foster emotional and cognitive processing. These strategies included conducting personal rituals, receiving support from colleagues and clinical supervision. Several factors hindering these coping strategies were identified, but the vast majority were shared by only a small minority of participants (e.g. feeling disenfranchised in their grief for clients). Repeated exposure to client death caused participants to feel emotionally and physically drained (and for some leading to greater fear of illness and dying). It also affected their outlook on life positively, leading to personal growth. Participants managed the negative long-term impact of their work using self-care strategies, which included working in cancer- and palliative-care settings on a part-time basis, and engaging in creative and future-oriented activities promoting a sense of hope, possibilities, and growth. Conclusion and implications: Although many hospice psychotherapists repeatedly experience grief following the deaths of their clients, most appear able to manage the immediate and long-term impacts of their work. Working in proximity to illness and death is seen as deeply challenging but at the same time as promoting personal growth, and to enhance and bring meaning to hospice psychotherapists' lives. Furthermore, the mixed-methods design adopted here provides evidence that while the qualitative methods employed produced rich data, the addition of a simple quantitative survey allowed to put these in perspective about the wider group of hospice psychotherapists. I argue that this finding supports the call, prevalent in the mixed-methods research literature, to question the segregation of qualitative and quantitative methods.

The focus of this study is to explore and examine the views and feelings of United States documented and undocumented immigrants on their final resting place after death, posthumous repatriation, whether there is a need for repatriation, and if a lack of such need is preventing immigrant groups from remaining in the United States and benefiting from end-of-life services such as hospice. A quantitative research method was utilized. The use of a quantitative research method allowed for an expansive look into the use of posthumous repatriation and its effect on hospice use by immigrants. Data were obtained from multiple locations that serve and cater to specific ethnic groups within the region of the Inland Empire in Southern California. Sixty-three immigrants who identified themselves as persons born in a country outside the United States are the sample. This study produced evidence that family plays a major role in end-of-life decisions and argues the need of repatriation by immigrant groups as a potential reason for the underutilization of hospice services. The guarantee of return to their country of origin after death produced greater inclination to use hospice.

Currently in the United States, five states have enacted physician-assisted suicide as a legal end of life option for terminal patients. Research indicates that most patients who have died under this mean have been enrolled in hospice services. With the recent enactment of California’s End of Life Option Act, hospice social workers will find themselves educating and assisting patients and/or their families with this and other end of life decisions. Research has thoroughly examined physician and nurses’ involvement and attitude in the matter, but little has been researched regarding social workers. This study aimed to identify the factors that affect hospice social workers’ attitude towards physician-assisted suicide and how California’s End of Life Option Act affects their practice. In-depth face-to- face interviews with 8 hospice social workers were conducted. The study found that all 8 participants held positive attitudes towards physician-assisted suicide, support the End of Life Option Act, and feel prepared to assist patients and handle requests for the End of Life Option. Factors such as social work values and professional experience have a positive effect and validate their attitude, and factors such as religion does not affect their attitude. Due to low participation, the overall results were limited; therefore, additionally research should be extensively conducted to gain a better understanding. Regardless, a structured physician-assisted suicide protocol for social workers would benefit micro practice and macro developments.

Americans often face end-of-life with ineffective pain/symptom control. While hospice care prevents suffering for the terminally ill, only around 40% of individuals access services. Although few studies describe differences in terms of cancer vs. non- cancer diagnoses, hospice utilization/access disparities appear to exist. Analyzing 14 sociodemographic and clinical variables for 3,905 hospice discharge cases, this study highlights observed disproportions between cancer and non-cancer groups, identifying significant relationships amongst patient characteristics and hospice diagnosis. Factors found significantly related to diagnosis include components of the following: age, primary payment source, mortality status at discharge, hospice initiation location, length of stay, physical function, cognitive function, and presence of pain symptoms. Results confirm low overall hospice utilization rates, while validating diagnosis-specific differences driven by individual and population-based characteristics. In order to increase utilization/access rates and eliminate current disparities, patients presenting with certain terminal diseases may require greater provider flexibility in terms of hospice eligibility requirements.

I dagens västerländska samhälle intar döden en undanskymd roll. Detta kan medföra mindre kunskap om hur man som vårdpersonal bör bemöta människor i livets slutskede. Då vårdpersonal på hospice dagligen möter människor i livets slutskede kan det finnas stor kunskap att hämta där. Syftet med studien var att beskriva hur vårdpersonal på hospice upplever och hanterar sina känslor med att dagligen möta döende och deras anhöriga, samt att beskriva vårdpersonalens resurser som tillämpas i arbetet. Studien genomfördes med en kvalitativ ansats, där tre sjuksköterskor och tre undersköterskor, samtliga kvinnor intervjuades med hjälp av semistrukturerade frågor. I resultatet framkom det tre stycken huvudkategorier. Den första var vårdpersonalens känslor, med bland annat subkategorierna tillfredställelse och osäkerhet. Den andra var vårdpersonalens egna resurser, som bland annat bestod i att kunna vara tillgänglig och att kunna kommunicera. Den sista var vårdpersonalens känslomässiga bearbetning som bestod av bland annat handledning och fysisk aktivitet. I huvudsak uppgav informanterna att de kände en stor tillfredställelse i arbetet på hospice men det fanns också tillfällen då de kände otillräcklighet och osäkerhet i mötet med människor i livets slutskede och anhöriga. Det framkom även resurser som underlättar arbetet för vårdpersonalen. Dessa är att kunna vara tillgänglig, kunna kommunicera och att våga vara naturlig. Den kunskap som har framkommit i resultatet kan spridas till vårdpersonal som önskar mer information om ämnet.