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<p><strong>Background:</strong> The objective of this mixed methods study is to understand, from the perspectives of seriously ill hospitalized patients, the effect of modifiable physician behaviours on the perceived quality of end-of-life and ACP communication. <strong></strong></p> <p><strong>Methods:</strong> A convergent parallel mixed methods design is used. Participants were recruited from inpatient medical wards at two academic hospitals, and a population with a high risk of mortality at 6-12 months was selected. In the quantitative strand, a questionnaire was administered to measure patients’ self-rated satisfaction with their physician’s ACP communication skills. The primary analysis involved calculation of the strength of correlation between individual QOC items and a global satisfaction score. In the qualitative strand, interpretive description methods were used to explore seriously ill patients’ perceptions of the quality of ACP communication with their physicians. The mixed methods analysis phase involved the creation of a merged analysis table.</p> <p><strong>Results: </strong>From the quantitative strand, three priority behaviours pertained to eye contact, providing full attention, and listening. The three major qualitative themes related to nonverbal behaviours; situating a patient in the context of their background, family and social roles; and assisting patients to make the challenging end-of-life transition. The merged analysis allowed for a fuller, contextualized understanding of why the QOC items with the strongest correlation measures were important from a patient perspective.</p> <p><strong>Conclusions:</strong> This mixed methods study is well-positioned to understand, holistically and from the patient perspective, physician behaviours that influence quality of communication at the end of life.</p> / Master of Science (MSc)

No / The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of 'end of life' within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy's recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of 'continuous palliation'.

Abstrakt: Okontrollerade symptom och upprepade sjukhusinläggningar kännetecknar den sista tiden i livet hos en del patienter med mycket svår KOL. Trots att det finns en växande insikt att tidig integration av palliativ vård förbättrar patientens symtombehandling och livskvalitet, dör majoriteten av patienter med KOL utan tillgång till palliativ vård. Sjuksköterskor i hemsjukvården har en central roll när det gäller att identifiera och hantera patienternas palliativa vårdbehov. Syfte: Syftet med denna studie är att belysa hur sjuksköterskor i hemsjukvården upplever den palliativa vården av patienter med mycket svår KOL. Metod: Kvalitativ studie där 11 semistrukturerade intervjuer bearbetats med kvalitativ innehållsanalys. Resultat: Insamlat datamaterial resulterade i tre kategorier som påvisar förutsättningar för god palliativ vård i hemmet: 1) Personella och organisatoriska resurser i hemsjuk- och primärvården där stora brister i samarbetet med primärvården samt bristande resurserna för god vård i hemmet noteras. 2) Planering och kommunikation där bristande kommunikation med patienten och mellan olika vårdinsatser samt planering kring patientens vård poängteras. 3) Kunskap där ett behov av att utöka kunskapen om KOL och palliativ vård hos alla yrkeskategorier uppmärksammas. Konklusion: Patienter med mycket svår KOL får ofta en god palliativ vård i livets absoluta slutskede. Resultatet visar dock att patientens vård under de sista månaderna i livet ofta upplevs som oklar och diffus, vilket pekar på att palliativ vård behöver integreras tidigare i vården av patienter med mycket svår KOL. I kommunikations- och planeringsprocessen med patienten har sjuksköterskor en samordnande roll som behöver specificeras och utrustas med de erforderliga personella och organisatoriska resurserna, kunskaperna och befogenheterna. / Abstract: Uncontrolled symptoms and repeated hospitalizations characterize the last period of life in some patients with very severe COPD. Although there is a growing recognition that early integration of palliative care improves the treatment of patient's symptoms and quality of life, the majority of patients with COPD dies without access to palliative care. Nurses in home care have a central role in identifying and managing patients' palliative care needs. Aim: The purpose of this study is to examine how nurses in home care and in nursing homes experience palliative care of patients with severe COPD. Method: Qualitative study in which 11 semi-structured interviews processed using qualitative content analysis. Results: Collected data resulted in three categories that indicate conditions for good palliative care in the home: 1) Human and organizational resources in home- and primary care, where serious deficits within primary care and resources for good home care is noted. 2) Planning and communication, where the lack of communication with the patient and between different health care institutions as well as care planning is emphasized. 3) Knowledge, where a need to improve knowledge of COPD and palliative care for all care professions is recognized. Conclusion: The result shows that the patient's care during the last months of life is often perceived as vague and diffuse, suggesting that palliative care needs to be integrated earlier in the care of patients with very severe COPD. In the communication process and care planning with patients, nurses have a coordinating role that needs to be specified and equipped with the requisite human and organizational resources, skills and competences.

Hospital admissions for patients close to the end of life are considered ‘inappropriate’ in contemporary English health policy. Hospitals are supposedly unable to offer a ‘good’ death for patients, and dying there is thought to contradict patient choice, since patients are assumed to want to die at home. However, almost half of all deaths in England in 2015 occurred in hospital, and of these, nearly a third died within three days of admission. This thesis seeks to explore why these admissions are considered to be a problem and how they occur. Through a systematic review of UK literature I found that it cannot be stated that most patients want to die at home, because of the extent of missing data (preferences not asked, expressed, reported or absent). This finding challenges the justification that admissions are inappropriate because they contravene patient choice. Similarly inconclusive evidence about the undesirability, cost, and lack of need for patients to be in hospital were also found in a review of policy. Together with analysis of historical trends in hospital and hospice provision, it is apparent that attitudes towards end-of-life admissions reflect existing tensions about the role of hospital as an acute provider, and as a place of death. An analysis of interviews conducted with healthcare staff and next-of-kin involved in the admission of patients (case-patients) who died shortly after being admitted to Meadowbridge, a large English hospital explored these tensions further. I found that whilst hospital was not recognised as a place where ‘good’ deaths typically occurred, it was acknowledged as an emergency place of care. In this context, patients without obvious need for hospital care were nevertheless admitted to the hospital and the environment was subsequently recognised to offer distinct benefits. The need for emergency care reflected the difficulties of providing end-of-life care in the community. For dying to occur appropriately, home had to be adapted and care organised by healthcare staff. Both tasks were complicated by the unpredictability of dying, and family carers helped to absorb much of the uncertainty and support patients to die at home. Ambulance staff became involved when patients had care needs that exceeded care quickly and easily available in the community. When called to the case-patients, ambulance staff instituted familiar practices in transferring them to hospital. Hospital was recognised as a default place of care because ambulance staff struggled to facilitate alternative care and lacked sufficient professional authority to keep patients at home. The admissions of the case-patients represent the best attempts of staff to navigate the tangled practices of end-of-life care. These practices are the result of the actions of the staff, which in turn both constrained and enabled their action in providing care to patients. The term ‘inappropriate’ to describe admissions does not encompass these attempts, and moreover, devalued the significant care provided by healthcare staff in the community and hospital.

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