Thesis advisor: Andrea Vicini / Thesis advisor: Daniel Daly / Thesis (STL) — Boston College, 2023. / Submitted to: Boston College. School of Theology and Ministry. / Discipline: Sacred Theology.

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Yes / Commentary on: Shaw KL, Spry J, Cummins C, et al. Advance care planning in perinatal settings: national survey of implementation using Normalisation Process Theory. Archives of Disease in Childhood - Fetal and Neonatal Edition Published Online First: 14 September 2023. doi: 10.1136/archdischild-2023-325649.

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

This study explores whether queer people wait longer than non-queer people to seek professional medical care in the wake of an illness or injury. Little scholarship has evaluated queer people's pursuit of palliative medical care. An online survey was distributed to Virginia Tech students aged 18-30 years old who have experienced an illness or injury in the last year that compromised their daily function. Using demographic data obtained about gender identity and sexuality, respondents were divided into "queer" (non-cisgender and/or non-heterosexuals) and "non-queer" (cisgender, heterosexuals) groups. The survey assessed the number of days between the onset of an illness or injury and the first attempt to schedule care. The statistical analysis revealed significant differences suggesting that, of the people who had received care in the last 12 months, queer people, on average, waited fewer days than non-queer people to attempt to schedule care. This does not include respondents who indicated that they did not receive care in the last 12 months. This may indicate that queer people forego seeking palliative care unless absolutely necessary. This study is informed by M. Reynolds's Health Power Resources theory, and demonstrates the importance of measuring not only the presence of behaviors but also the absence of relevant behaviors when applying this theory. Based on the results, this study calls for further research into both delays in care-seeking behavior and into healthcare avoidance among queer individuals. / Master of Science / If two different people catch an illness and one of them identifies as transgender or gay, but the other one identifies as straight and cisgender, which one of them will wait longer to see a doctor? Waiting longer to get healthcare can be dangerous and costly, and yet many people wait to get healthcare even when they get sick or injured. Queer people (those who do not identify as cisgender and heterosexual) have themselves reported experiencing a number of barriers to receiving healthcare in the United States. This study compares how long queer and non-queer people wait to seek healthcare after an illness or injury to see if these reported barriers to accessing healthcare contribute to a greater reluctance among queer people to pursue healthcare. This reluctance is measured as the number of days between the start of a person's medical ailment and their first attempt at scheduling or receiving professional care for said ailment. A survey was conducted of Virginia Tech students, all of whom experienced an illness or injury in the last 12 months that compromised their ability to perform daily tasks (such as attending classes or completing housework). The results indicated that, of the people who had received care in the last year, queer people, on average, waited fewer days than non-queer people to seek care. However; this dataset does not reflect the experiences of those who indicated that, despite getting sick or injured, they did not receive care in the last 12 months. This may suggest that queer people avoid getting professional help for an illness or injury unless absolutely necessary, instead waiting for injuries or illnesses to get better without professional care. Based on the results, more research is needed on both delays in care-seeking and on healthcare avoidance among queer individuals.

Hospital-based specialist palliative care services are designed to address the needs of critically ill patients by psychosocial and spiritual support, improving symptoms management, and offering discussions on goals of care. Integrating palliative care upstream in the care continuum for patients who eventually die in the hospital will help to address the many individualistic needs of the critically ill patient. The diffusion of specialist hospital-based palliative care services requires an understanding of patterns of utilization by patients. The purpose of this study was to examine the population characteristics of decedents who may or may not have utilized specialist palliative care services in a hospital setting in order to develop a model of predictors of access to specialist palliative care services. The basic constructs of this study are grounded in the Behavioral Model of Health Services Use. Potential access is measured in terms of population characteristics, which include predisposing characteristics, enabling resources, and evaluated need. Building on this theoretical model, the study sought to better understand equitable and inequitable access to specialized palliative care services and to define which predictors of realized access were dominant. The research question asked was: What are predictors of access to specialized palliative care within a large urban public teaching hospital? A model of access to a palliative consult and a predictor of access to a palliative care unit were explored. Findings from this study revealed that factors encouraging access to a palliative care consult include older age, White non-Hispanic ethnic membership, a diagnosis with solid cancer and insurance. Factors encouraging access to a palliative care unit include older age, gender (female), insurance, and either a solid cancer or hematologic malignancy diagnosis.

Med palliativ vård menas att inriktningen på vården är att lindra symptomen, möjligheten att bota sjukdomen finns inte längre. Läkaren ska då försäkra sig om att livsuppehållande behandlingar inte längre kan påverka sjukdomsförloppet, ta största möjliga hänsyn till patientens önskemål och ta det avgörande beslutet att avsluta eller avbryta en livsuppehållande behandling. Palliativ vård är på många områden numera utbyggd till avancerade hemsjukvårdsteam. Tidigare studier har i huvudsak fokuserat på anhöriga eller vårdpersonal och då särskilt sjuksköterskans upplevelser av att vårda palliativa patienter. Därför är det viktigt att tydliggöra patientperspektivet. Syftet med denna litteraturstudie var att beskriva befintlig forskning om hur patienter inom palliativ vård upplever den sista tiden i livet. Metoden som använts är litteraturstudie och resultatet är funnit i 10 vetenskapliga artiklar. Resultatet redovisas med hjälp av fyra kategorier; Hopp och hopplöshet, Mening och maktlöshet, Tillgänglighet och ensamhet samt Acceptans. Slutsatsen är att den som är allvarligt sjuk och står inför döden bör mötas och behandlas av palliativ vård som grundas i hopp, mening, tillgänglighet och acceptans. För att förbättra den sista tiden i livet för patienten inom palliativ vård när det gäller bevarad värdighet finns det, med stöd i studiens resultat, specifika aspekter att beakta. Patienten bör delta i sin vård så långt det är möjligt; Hopp är inte alltid kopplat till bot; Vårdarna bör underlätta sociala kontakter; Vårdarna bör vara tillgängliga, även när det inte finns något att säga; Allvarlig information bör ges stegvis; och Teamarbete med flera olika professioner.

The following article is a study about counsellors working with terminally ill patients receiving Palliative care. In an effort to understand their role in the Palliative team and how they participate in the care of dying individuals, four counsellors working in four different Palliative hospices in Stockholm were interviewed by using structured interviews. The key questions concern the methods and interventions counsellors use, the risk factors that the job entails, the support they receive and finally their reflections about life and death The literature on the topic was accessed via Ersta Sköndal Högskola College library and Internet database. The results of the study reveal that Palliative Care Approach takes into consideration all aspects of an individual (physical, psychological, social and spiritual). Counsellors are part of a multidisciplinary team and their role is to focus on the social and psychological aspects. They undertake comprehensive assessments of the patient’s context and their coping strategies through the use of psychosocial theories such as Sense of Coherence and Logo therapy. Via their skilled use of core counselling skills they establish close relationships with patients and families. At the same time they are always mindful of keeping the right distance. Counsellors are the receivers of a lot of emotional pain and suffering of patients and families and as such this transference can lead to emotional exhaustion. Access to good support is an essential prerequisite for avoiding burnout. Close encounters with death leads to reflections of life and death. Counsellors need to be well developed and experienced in order to provide good quality palliative care.