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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.

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.

This master thesis covers the palliative care in a hospice and a hospital. A lot of seriously ill patients suffering from incurable diagnoses die in hospitals. Therefore the nursing staff come into a close contact with patients near the end of their life.The nurses are in a close contact with the patients. The nurses sense emotions and suffering of dying patients. They sense also feelings of patients in case when improper cure and treatment are applied. Taking care of dying patients is stressing situation. The care covers not only the patient himself but it also includes the communication with the patients´ family and later the bereaved families.The hospital environment is primarily targeted to acute care. The palliative care is at the periphery. In The Czech Republic the palliative care is emerging in hospices mainly. That is the reason why the hospices may serve as a source of inspiration for improvements of the palliative care in other medical institutions.The first part of the theory section describes the main principles of a palliative care. The next part deals with mutual relations between the dying patient, the disease, between the nurse and the family and relatives of the dying patient. The last part deals with the ethical problems in the dying patients nursing, describes the environment where the palliative care is provided and researches the palliative care standards. There are three main goals of the work. The first goal is to compare the level of palliative care standards in different types of medical institutions. The second goal is to evaluate the possibility of providing of the palliative care in the different types of the medical institutions. The third goal is to suggest possibility of the hospital palliative care improvements according to results of the surveys.In the research part an analysis of written documents was performed. The quantitaive part of the research used an anonymous survey. We created two surveys to perform the research. The first survey was targeted to the nursing management and their view of the palliative care provided in the different types of medical institutions.The survey was distributed to 238 relevant medical institutions by electronic means. It consists 6 questions. 3 of them were closed questions, remaining 3 were semiclosed. The survey was opened by 78 respondents of different institutions. 26 respondents took part and finished the survey. According to answers of 26 nursing managers 18 of them agreed to cooperate further and participate in more detailed survey targeted on the nurses who work directly with patients and provide the palliative care. The second survey consisted of 26 questions and 13 of them were closed and 13 semiclosed. The survey was finished by 150 respondents from different medical institutions: hospitals, long term care hospitals and hospices. The data of the both surveys were statistically evaluated.We established 4 hypothesis. H1: The presence of palliative standard depends on the type of medical institution. The hypothesis is valid. H2: The palliative care standards are focused mainly on the basic physical needs providing and less to the spiritual and psycho-social needs providing. The hypothesis was not sufficiently proven. H3: The possibility to provide palliative care by nursing staff depends on the type of medical institution. The hypothesis is valid. H4: From the point of view of nursing staff the palliative care providing depends on the environmental conditions. The answers of the nursing staff take us to the conclusion that the environment influences providing the palliative care. The results of the research shows, that the palliative standards in the medical institutions exist. The standards are focused mainly on providing basic physical needs. There is an evidence that the quality palliative care can be provided in case when the conditions are adequate.