Bakgrund: Hopp är ett fenomen som är svårt att definiera. Hopp upplevs på olika sätt och i olika omfattningar av patienter med en dödlig sjukdom. Upplevelsen av hopp samspelar med upplevelsen av hopplöshet. Hopp är betydelsefullt för patienter i palliativ vård och kan ge patienter förmåga att uthärda lidandet och det betraktas som en inre resurs som är viktig för att uppnå livskvalitet. Syfte: Att studera patienters upplevelser av hopp i livets slutskede. Metod: En litteraturstudie gjordes utifrån vetenskapliga artiklar. Tio artiklar var funna och granskades. Nio artiklar var kvalitativa och en var kvantitativ. De utvalda artiklarna studerades och meningsbärande enheter plockades ut och utvecklades till kategorier. Resultat: Resultatet är presenterat utifrån symtomlindring, självständighet, relationer, positiv inställning, syntes och acceptans. Resultatet belyser patienters upplevelser av hopp samt hur betydelsefullt hoppet är i livets slutskede. Upplevelsen av hopp är att ha en god symtomlindring, att få vara med familj och vänner och att vara oberoende. Diskussion: Patienters upplevelse av hopp diskuteras i relation till annan forskning om patienters upplevelser om hopp och i relation till de sex S:n. Det diskuteras även betydelsefulla aspekter kring hur sjuksköterskor kan främja patienters upplevelse av hopp. / Background: Hope is a phenomenon that is difficult to define. Hope is experienced in different ways and in different degrees by patients with a terminal illness. The experience of hope interacts with the experience of hopelessness. Hope is important for patients in palliative care and is able to give patients the ability to endure suffering and it is considered as an inner resource that is important to achieve quality of life. Aim: To study patients’ experiences of hope at the end of life. Method: A literature study was made by scientific articles. Ten articles were found and examined. Nine articles were qualitative and one was quantitative. The selected articles were studied and significant units were picked out and developed into categories. Results: The results are presented by symptom relief, independence, relationships, positive attitude, synthesis and acceptance. The results illustrate patients’ experiences of hope and how meaningful hope is at the end of life. Hope is having a good symptom relief, being with family and friends and being independent. Discussion: Patients’ experiences of hope are discussed in relation to other research on patients’ experiences of hope and in relation to the six S words. It also discusses important aspects of how nurses are able to foster patients’ experiences hope.

Introduction: In the palliative care literature there has been debate over the occurrence and the desirability of the rationalization of palliative care. The discussion is based mostly on opinion, anecdote and argument. Little discussion is based on research, or is specific to Canada. Considering this question of rationalization, this thesis asks whether Canadian palliative care ethics has changed, and if so in what regard. Methods: Discourse analysis was used to evaluate texts and interviews from early and late Canadian palliative care. Based on expression, influence and comprehensiveness, two key texts were identified from each of the early and late periods of palliative care. Ten interviews were conducted with Canadian palliative care pioneers practicing across these periods. These interviews were semi-structured, and were based on the background literature and the textual analysis. Results: Analysis of the textual data led to the descriptive themes of person, profession and well-being. These themes, when compared across the early and late periods, generated three themes of process. Analysis of the interview data generated three similar themes of process. The themes of process from the textual and interview data were similar enough to generate three overall themes of process – routinization, medicalization, and professionalization.

Introduction: In the palliative care literature there has been debate over the occurrence and the desirability of the rationalization of palliative care. The discussion is based mostly on opinion, anecdote and argument. Little discussion is based on research, or is specific to Canada. Considering this question of rationalization, this thesis asks whether Canadian palliative care ethics has changed, and if so in what regard. Methods: Discourse analysis was used to evaluate texts and interviews from early and late Canadian palliative care. Based on expression, influence and comprehensiveness, two key texts were identified from each of the early and late periods of palliative care. Ten interviews were conducted with Canadian palliative care pioneers practicing across these periods. These interviews were semi-structured, and were based on the background literature and the textual analysis. Results: Analysis of the textual data led to the descriptive themes of person, profession and well-being. These themes, when compared across the early and late periods, generated three themes of process. Analysis of the interview data generated three similar themes of process. The themes of process from the textual and interview data were similar enough to generate three overall themes of process – routinization, medicalization, and professionalization.

Although the curative model of medical care is predominant it is necessary to consider the palliative strategies at the end-of-life. The inter-relation of dying children, their families and pediatric palliative care teams are seldom analyzed outside Palliative Care. However, it is important to ethnographically think about the disturbing experiences of body and subject disintegration while people are directly experiencing them, even when the person is a child or a newborn baby. A central topic in this study is how personhood, body formation and disintegration, and childhood can be understood within the context of unevenly constructed and shared palliative communication with and without words. Hence, I analyze in this study how a Palliative Care Team in the city of Buenos Aires provides care, communicates, and ultimately produces a particular companionship to dying children and their families. This work is built on qualitative information gathered and produced during my four-month fieldwork with the Palliative Care Team. The ethnographic techniques (participant observation, non-participant observation and open-ended semi-structured interviews) I conducted show that their strategies of care and communication have as the main goal the process of companionship at the end of children’s lives. It is necessary to understand how patients, parents, and other family members are situated in this field of tensions between restorative and palliative medicine, and brought into this culture of Palliative Care in a public children’s hospital. My research asks, in what ways are pediatric Palliative Care practices exclusive to the social and cultural contexts of Buenos Aires? This work has three main sections: 1. care, 2. communication, and 3. companionship. In section one I focus on the clinical and non-clinical aspects of care involving the professionals’ and volunteers’ practices of giving care. In section two I concentrate my attention on the verbal and non-verbal aspects of the Palliative Care Team communication with children and families. In section three I consider the professional production of ‘companionship’. In this thesis I will demonstrate the significance of this concept according to the Palliative Care Team members and how care and communication are the base for the ‘production of companionship.’

Despite the rapid development of palliative care teams, evidence for their effectiveness in oncology care is lacking. This thesis reviews and contributes towards this evidence, focusing on the randomized controlled trial as a research method. We conducted a systematic review of 22 trials reviewed that measured effectiveness of specialized palliative care. Family satisfaction with care improved in seven of 10 studies, but only four of 13 trials assessing quality of life and one of 14 assessing symptoms showed a benefit of the intervention. Conclusions were limited by methodologic problems in all of the trials. We conducted a phase II study of the efficacy of a palliative care team for symptom control and satisfaction of 150 patients with advanced cancer. Symptom severity (Edmonton Symptom Assessment System Distress Score) improved at one week and one month, as did patient satisfaction (all p<0.0001). We investigated factors associated with symptom severity and response for patients enrolled in the phase II study. Symptoms at baseline were worse for women and those with worse performance status (both p<0.005); female gender and worse baseline symptom severity independently predicted symptom improvement (both p<0.05). We planned and initiated an RCT of the effectiveness of an early palliative care intervention for improvement of health-related quality of life (HRQL) and satisfaction with care. Using baseline data from this RCT, we examined factors associated with HRQL in patients with advanced cancer. The strongest determinants of overall HRQL (combined FACT-G total score and FACIT-Sp Meaning and Peace subscore) were increased age (p<0.001), good performance status (p<0.001) and survival time >6 months (p=0.001). Compared to patients receiving cancer treatment, those awaiting new treatment had worse emotional well-being (p<0.001) while those on surveillance or whose treatment had been stopped had worse existential well-being (p=0.03). Male gender predicted better emotional and physical well-being and lower income predicted worse social well-being. Lastly, we developed recommendations for those planning an RCT in a palliative care population, incorporating information from the studies presented. Although such RCTs are challenging to conduct, they are feasible and necessary to improve the evidence base for the treatment of patients with advanced cancer.

Despite the rapid development of palliative care teams, evidence for their effectiveness in oncology care is lacking. This thesis reviews and contributes towards this evidence, focusing on the randomized controlled trial as a research method. We conducted a systematic review of 22 trials reviewed that measured effectiveness of specialized palliative care. Family satisfaction with care improved in seven of 10 studies, but only four of 13 trials assessing quality of life and one of 14 assessing symptoms showed a benefit of the intervention. Conclusions were limited by methodologic problems in all of the trials. We conducted a phase II study of the efficacy of a palliative care team for symptom control and satisfaction of 150 patients with advanced cancer. Symptom severity (Edmonton Symptom Assessment System Distress Score) improved at one week and one month, as did patient satisfaction (all p<0.0001). We investigated factors associated with symptom severity and response for patients enrolled in the phase II study. Symptoms at baseline were worse for women and those with worse performance status (both p<0.005); female gender and worse baseline symptom severity independently predicted symptom improvement (both p<0.05). We planned and initiated an RCT of the effectiveness of an early palliative care intervention for improvement of health-related quality of life (HRQL) and satisfaction with care. Using baseline data from this RCT, we examined factors associated with HRQL in patients with advanced cancer. The strongest determinants of overall HRQL (combined FACT-G total score and FACIT-Sp Meaning and Peace subscore) were increased age (p<0.001), good performance status (p<0.001) and survival time >6 months (p=0.001). Compared to patients receiving cancer treatment, those awaiting new treatment had worse emotional well-being (p<0.001) while those on surveillance or whose treatment had been stopped had worse existential well-being (p=0.03). Male gender predicted better emotional and physical well-being and lower income predicted worse social well-being. Lastly, we developed recommendations for those planning an RCT in a palliative care population, incorporating information from the studies presented. Although such RCTs are challenging to conduct, they are feasible and necessary to improve the evidence base for the treatment of patients with advanced cancer.

Conversation analysis (CA) was used to examine descriptions of pain, the design of questions and answers, and patterns of elaboration. I analysed audio- and video-recorded consultations involving six physicians and one patient in a supportive/palliative care clinic. The physicians enquired about a diversity of aspects of pain (e.g., severity). The patient’s answers aligned with questions indicating that his pain was stable (i.e., no change, no new pain, managed pain), which was consistent with the Clinic’s optimal health outcomes. Questions designed for a ‘no-pain’ answer were relatively infrequent. Whether or not these questions were problematic for the patient depended on when they were asked. The physicians used both single- and multi-unit questioning turns and an assortment of question types (i.e., yes/no interrogatives, yes/no declaratives, alternative questions and WH-questions). The questions were analyzed using four dimensions of question design (agenda, presuppositions, preferences and epistemic stance). While the patient accepted the topic agenda of aspects of pain, he rejected the topic agenda of pain management evaluation. He also rejected presuppositions that implied disease progression. Analysis of the action agenda showed that the physicians relied heavily on yes/no-type polar questions. Some of these encouraged elaboration (e.g., were problem attentive); however, a number of them discouraged elaboration (e.g., were optimized or included a negative polarity item such as any). Some questions that discouraged elaboration allowed the physicians to progress efficiently through a checklist of standardized questions, thus aiding in the progressivity of the talk. Change-implicative talk was pervasive in the physicians’ and patient’s talk; the patient’s answers often rejected the implication that his pain was worse. The characterization of the consultations as “difficult” by some of the physicians is considered in relation to the design of questions that elicited minimal information about the patient’s pain. Study limitations (e.g., the data sample) and directions for future research (e.g., on what constitutes an optimal health outcome) are discussed, and my findings are considered in relation to palliative care practice and training. The study fills some gaps in current palliative care literature regarding the dynamics of physician-patient interactions and contributes to the CA literature on medical interactions.

Palliativt förhållningssätt kännetecknas av helhetssyn av människan och uppnås genom stöttning av individen att leva med värdighet och största möjliga välbefinnande till livets slut oavsett diagnos eller ålder. Demens är en sjukdom som är svårt handikappande för den som drabbas och för de anhöriga är sjukdomen förödande. Den palliativa vården av personer med demens är inte optimerad. Studier visar att det dels beror på demenssjukdomen som är svår att vårda och dels för att stöd till de personer som vårdar sina anhöriga och det sociala kommunala nätverket har brister. Syfte: Att analysera upplevelsen av given vård i livets slutskede hos personer med demensdiagnos ur personalens och anhörigas perspektiv. Metod: Metasyntes utförd med Howell Major och Savin-Badins analysmodell, Qualitative Research Synthesis. Resultat: Kunskap och personcentrering var de två begrepp som blev produkten av syntesen. Begreppen fungerar som motsatser, om det finns kunskap och personcentrering så finns en bra upplevelse av given vård hos personal och anhöriga och om det brister i kunskap och personcentrering blir upplevelsen sämre. Diskussion: Kunskap om demens bland personal har i syntesen visats vara en indikator för god vård vid livets slut. Utbildning i demenssjukdom bör ske kontinuerligt och på olika nivåer beroende på vilken personalkategori som utbildas. Konklusion: Palliativ vård och demens måste få utrymme i utbildningarna av all personal, från undersköterska till specialistläkare. / Palliative care is an approach characterized by a holistic view of a person and is achieved by supporting the individual’s right to live with dignity and optimal comfort until the end, regardless of age and diagnosis. Dementia is seriously disabling for the individual and is often devastating for their caregivers and families. The palliative care of persons with dementia is not optimal. Studies show that it is partly due to dementia that is difficult to nurture and partly the support of those who care for their relative and the local social network is poor. Aim: To analyse the experience of given care to people with dementia diagnosis from key providers of care and relatives' perspective. Method: Meta Synthesis with Howell Major and Savin - Badins analytical model, Qualitative Research Synthesis. Results: Knowledge and person-centeredness were the two concepts that emerged from the synthesis. They work as contradiction in terms, if there is knowledge and person-centeredness, good experience of given care are achieved, if there is gaps in knowledge and person-centeredness, the experience of care is poor. Discussion: Knowledge of dementia among key providers of care and relatives in the synthesis proved to be a great indicator of good care at the end of life. Education in dementia and palliative care should be done routinely and be based on level of education. Conclusion: Palliative care, dementia and person centeredness must have their space in the education of all key providers of care, from assisting nurses to specialists.

Our objective was to examine the impact of palliative care (PC) on aggressive care near death for patients with advanced pancreatic cancer. Measures of aggressive care included (i) chemotherapy within 14 days of death; (ii) more than one emergency department (ED) visit; (iii) more than one hospitalization; and (iv) at least one intensive care unit (ICU) admission, all within 30 days of death. A retrospective population-based cohort study was conducted with patients diagnosed with advanced pancreatic cancer in Ontario. Multivariable logistic analyses were performed. Our final cohort consisted of 5,381 patients (median survival of 75 days). 52% received a PC consultation. PC consultation was associated with decreased use of chemotherapy near death (OR=0.34); and lower risk of ICU admission (OR=0.12), multiple ED visits (OR=0.19), and multiple hospitalizations near death (OR=0.24). A per unit increase in the monthly rate of PC visits was associated with lower odds of aggressive care.

Our objective was to examine the impact of palliative care (PC) on aggressive care near death for patients with advanced pancreatic cancer. Measures of aggressive care included (i) chemotherapy within 14 days of death; (ii) more than one emergency department (ED) visit; (iii) more than one hospitalization; and (iv) at least one intensive care unit (ICU) admission, all within 30 days of death. A retrospective population-based cohort study was conducted with patients diagnosed with advanced pancreatic cancer in Ontario. Multivariable logistic analyses were performed. Our final cohort consisted of 5,381 patients (median survival of 75 days). 52% received a PC consultation. PC consultation was associated with decreased use of chemotherapy near death (OR=0.34); and lower risk of ICU admission (OR=0.12), multiple ED visits (OR=0.19), and multiple hospitalizations near death (OR=0.24). A per unit increase in the monthly rate of PC visits was associated with lower odds of aggressive care.