INTRODUÇÃO: A terminalidade da vida humana e a assistência ao paciente com doença que ameaça a vida envolvem questões éticas que devem ser enfrentadas por profissionais de saúde e outros envolvidos no cuidado. Conhecer os problemas éticos vivenciados na prática dos cuidados paliativos e discuti-los à luz de um referencial bioético favorece a deliberação para tomada de decisão e contribui à adequada assistência. OBJETIVOS: Identificar e analisar questões éticas reconhecidas por profissionais de uma equipe de Cuidados Paliativos, sob o referencial Bioético da Casuística; identificar quais os recursos e apoio para tomada de decisão. MÉTODOS: Pesquisa exploratória, qualitativa, com análise de conteúdo, em que profissionais atuantes em Cuidados Paliativos há pelo menos um ano responderam a entrevista semiestruturada. Realizada análise temática, adotando a Casuística como referencial teórico. RESULTADOS E DISCUSSÃO: Foram entrevistados onze profissionais de nível superior. A média de idade foi 41,3 anos. A média de exercício profissional foi de 14,5 anos, sendo em média 5,6 anos em Cuidados Paliativos. As principais questões éticas identificadas foram: Relativas às indicações terapêuticas: erros na compreensão sobre Cuidados Paliativos, que levam a falhas em encaminhamentos, pouca eficácia de interconsultas e desprestígio à equipe; divergências entre a conduta acordada entre equipe e paciente/família e a seguida no pronto socorro; futilidade terapêutica; encenação de reanimação do paciente; autoquestionamento sobre efetividade de intervenções cuja utilidade é provada em outros contextos de assistência; uso de determinados medicamentos, ventilação não invasiva e alimentação/hidratação artificial. Com relação às preferências do paciente: Respeito à autonomia do paciente; veracidade e direito à informação; habilidades de comunicação; cerco do silêncio; participação no processo de deliberação; documentação das preferências do paciente; escolha do local de tratamento e morte. Sobre qualidade de vida: componentes da qualidade de vida; divergências entre avaliações feitas pelo paciente ou outra por pessoa; proporcionalidade terapêutica; qualidade de morte. Relativo aos aspectos contextuais: disponibilidade de recursos para assistência e cuidados; conflitos de interesses de familiares; trabalho em equipe; ensino clínico. CONSIDERAÇÕES FINAIS: Questões éticas relevantes foram identificadas e discutidas. A Casuística mostrou-se adequada para a reflexão bioética na área. Os resultados reforçam a necessidade de formação de recursos humanos para atuação em Cuidados Paliativos incluindo conteúdos relacionados à ética e bioética para fazer frente às demandas do cotidiano da assistência. / INTRODUCTION: Terminality of human life and the support to patients with diseases that threatens life involve ethical questions that must be faced by health professionals and other people involved in patients care. Awareness of the ethical problems faced in palliative care practice and its discussion through the prism of bioethical references favors decision-making deliberations and contributes to adequate care. OBJECTIVES: Identification and analysis of ethical questions recognized by professionals of a palliative care team, under the bioethical reference of Casuistry; identification of resources and support for the decision-making. METHODS: Exploratory research, qualitative, with content analysis, in which Palliative Care practitioners who have worked for at least one year participated in a semi-structured interview. Thematic analysis was undertaken, adopting Casuistry as theoretical reference. RESULTS AND DISCUSSION: Eleven professionals, with at least a Bachelor of Science degree, were interviewed. The mean age was 41.3 years. The average time in the profession was 14.5 years, of which 5.6 years were spent on the practice of Palliative Care. The main ethical questions identified were: Relative to the therapeutic indications: errors in the comprehension of Palliative Care, which lead to failures in referrals, low efficacy of internal consultations and lack of prestige of the team, divergence between the conduct agreed upon by the team and the patient/family and the follow-up to the emergency room; medical futility; the role play of patient resuscitation; self-questioning about the effectiveness of interventions that have been proved in other contexts of support; use of certain medication, noninvasive ventilation and artificial feeding/hydration. Relative to the patients preferences: Respect to the autonomy of the patient; truthfulness and right to information; communication skills; silence conspiracy; participation in the deliberation process; documentation of patients preferences; choice of the location of treatment and death. Regarding quality of life: components of quality of life; divergence between assessments made by the patient or other people; therapeutic proportionality; death quality. Relative to contextual aspects: availability of resources for assistance and care; conflict of interests by family members; team work; clinical teaching. FINAL CONSIDERATIONS: Relevant ethical questions were identified and discussed. Casuistry was found to be adequate for the bioethical reflection in the area. Results reinforce the need for training of Palliative Care practitioners, including ethics and bioethics issues to meet the demands of everyday practice.

Identifying people with advanced illnesses whose health is deteriorating, assessing their needs and planning care proactively with them are healthcare priorities given the demographic trend of ageing populations in the UK and internationally. Over the past 10 years (2004-2014), I have led a series of research studies that have made an important academic contribution to improving palliative care services for patients with heart disease and advanced multimorbidity. My first paper reported secondary analysis of data generated from a qualitative study of the illness and care experiences of patients with advanced heart failure. This work used innovative, qualitative research methods to explore and understand patient, carer and health professional perspectives over time. My second study then evaluated whether health and social care services were configured and delivered in response to the needs of people with heart failure and their families. This led me to recommend an anticipatory care framework which integrated a palliative care approach with other aspects of treatment and care. Around this time, advance care planning (planning ahead to facilitate end-of-life care aligned with people’s goals and preferences) was being strongly advocated by NHS health policy makers despite limited research in the UK. For my third study, I evaluated an evidence-based, educational intervention for general practitioners while also exploring barriers and facilitators to advance care planning in primary care for patients with cancer or other advanced conditions. It was becoming increasingly clear that failure to identify people with deteriorating health and a high risk of dying in a timely way was a major barrier to more effective palliative care. The problem was greatest for patients with non-malignant conditions whose illness trajectory is much less easy to predict than in cancer populations. I therefore started to research and develop a new clinical tool designed to prompt early, proactive patient identification in routine clinical practice – the Supportive and Palliative Care Indicators Tool (SPICT). My fourth research paper reported an evaluation of the SPICT in a mixed-methods study in a large tertiary care hospital. The SPICT was then used to identify people with multimorbidity for my fifth study, a longitudinal exploration of patient and carer experiences of hospital admission and ongoing community care. In my final paper, I drew on my previous research and combined this with well-developed approaches to timely identification and effective communication. I described the design of a successful pilot randomised trial of future care planning with people who had advanced heart disease and their carers. This thesis presents a critical review of these six research studies setting them in context and demonstrating the impact they have had in ensuring that high quality research evidence informs current and future developments in palliative care policy and clinical practice.

O adoecimento de um membro familiar costuma acarretar inúmeras alterações em toda a estrutura e dinâmica familiar. Com a progressão e o agravamento da doença, quando a pessoa se encontra sem possibilidade de tratamento modificador da doença, aumenta o sofrimento tanto da pessoa adoecida quanto de sua família. O cuidador familiar de pessoas idosas em cuidados paliativos sofre junto ao enfermo, podendo enfrentar sobrecarga física, emocional e social decorrente da tarefa de cuidar e da possibilidade da morte. Entretanto, são escassos os estudos que avaliam a sobrecarga desta população. O objetivo deste estudo é identificar e analisar a percepção de sobrecarga por parte do cuidador familiar de idosos em cuidados paliativos. Trata-se de uma pesquisa do tipo transversal, exploratório, de metodologia quantitativa, não probabilística, com uma casuística total composta por 100 pessoas. Essa casuística foi estratificada de acordo com escore obtido por meio da aplicação do protocolo Karnofsky Performance Scale (KPS) com os idosos (com 60 anos ou acima) em cuidados paliativos oncológicos: um grupo com 25 cuidadores familiares de idosos com KPS abaixo de 40%; um grupo com 25 cuidadores de idosos em cuidados paliativos oncológicos com KPS de 70%, 60% ou 50%; um grupo controle com 50 cuidadores familiares de idosos em cuidados paliativos oncológicos, com KPS maior ou igual a 80%. Durante a coleta de dados, além do KPS, foram aplicados o questionário de caracterização clínica e sociodemográfica e os protocolos: Questionário de Classificação Socioeconômica Brasil e o Caregiver Burden Scale (CBScale), validado no Brasil. Para análise dos dados, foi realizada estatística descritiva e as comparações com os grupos foram feitas por meio do Teste Exato de Fisher e de um modelo de regressão quantílica. As análises foram feitas pelo software SAS 9.0 e Stata versão 13. Os resultados indicaram que os cuidadores familiares são, em sua maioria, mulheres, filhas ou esposas, de meia idade a idade mais avançada, predominantemente, na faixa etária de 56 a 71 anos, com baixa escolaridade, pertencentes a classes sociais C e que não realizam nenhuma atividade remunerada. Os maiores índices de sobrecarga foram percebidos em cuidadores do sexo feminino e em cuidadores de idosos os quais apresentam menores escores relativos à capacidade funcional (avaliados pelo KPS). Conclui-se que o agravamento da doença, o declínio funcional do idoso e a possibilidade da sua morte mais próxima fazem aumentar a sobrecarga dos cuidadores, com impactos na sua saúde e qualidade de vida, o que indica a necessidade de oferecimento de serviços de apoio a essa população o mais precocemente possível / The illness of a family member often brings on numerous changes throughout the structure and family dynamics. With the progression and worsening of the disease, when the person has no possibility of modifying the disease treatment, the suffering of the ill person and the family increases. The family caregivers of the elderly in palliative care suffer with the ill person and may face physical, emotional and social burden from the task of caring for and the possibility of death. However, there are only few studies assessing the burden of this population. The aim of this study is to identify and analyze the perception of burden on the part of caregivers of seniors in palliative care. It is a cross-sectional survey, exploratory, quantitative methodology, non-probabilistic, with the full sample composed of 100 people. This sample was stratified according to the score obtained by applying the Karnofsky Performance Scale (KPS) to the elderly (aged 60 and above) in oncology palliative care: a group of 25 family caregivers of elderly patients with KPS below 40%; a group of 25 caregivers of elderly in oncology palliative care with KPS of 70%, 60% or 50%; a control group of 50 family caregivers of elderly in oncology palliative care, with KPS greater than or equal to 80%. During data collection, in addition to KPS, it was applied a questionnaire clinical and sociodemographic and protocols: Brazil Economic Classification Criteria and the Caregiver Burden Scale (CBScale), validated in Brazil. For data analysis, it was performed descriptive statistics and comparisons with groups; they were made by Fisher\'s exact test and a Regression Quantiles Model. The analyses were performed using the software SAS 9.0 and Stata version 13. The results indicated that family caregivers are mostly women, daughters or wives, from middle- aged to older ages predominantly in the age group of 56-71, poorly educated, and belonging to social classes C and they do not perform any remunerated activity. The largest burden rates were seen in female caregivers and caregivers of seniors who have lower scores related to functional capacity (assessed by KPS). In conclusion, the aggravation of the disease, the functional decline of the elderly and the possibility of death increase the burden on caregivers, with impacts on their health and quality of life, which indicates the need of offering support services to this population as soon as possible

Background: An appreciation of the broader social determinants of health and wellbeing has led to the inclusion of new public health principles and practice within health and social care. End-of-life care has been no exception and there exists a favourable policy context, significant body of theoretical work, substantial practitioner interest and numerous practice examples. Despite this context, there has been little empirical exploration and the approaches remain poorly characterised. Aims and objectives: The aim of this study was to understand the impact a new public health approach to end-of-life care project can have when initiated through a hospice. Specifically this study sought to explore how a compassionate community project is experienced, what tensions exist, what processes support or impede the work, what specific challenges such a project developed from within this sector presents and what learning exists for the wider field. Methods: A mixed methods study employing multiple methods of data collection was performed. Data collection methods included: interviews; focus groups; participant observation; documentary analysis and service records. Ethics approval was obtained. Data were analysed according to modified grounded theory and using online software tool Dedoose. Results: Twenty-one interviews, two focus groups and 19 episodes of participant observation were conducted, 11 documents and service data on 180 Compassionate Neighbours and 173 Community Members were also included. Six key actions facilitated integration of new public health approaches with service provision approaches. Impacts from the work were wide ranging and included a reduction in loneliness, improvements in wellbeing and changes to hospice practice. Further to this, three underlying drivers emerged that underpinned the work as a whole. They were seen to translate the observed actions of the project into the impacts and included: altered power dynamics, expression of reciprocity in relationships and the development of agency. Discussion: The three drivers allow a deeper appreciation of the factors involved in the development of a compassionate community. The redressing of power dynamics within traditional provider-recipient relationships allowed for more equity, and created a space for reciprocal and mutual relations to emerge. Not only were these reciprocal relations observed between those at the end of life and those visiting them, but also between participants in the project and the hospice. In order to adequately capture these new perspectives offered through this study, a new term collective social capital is introduced. This moves beyond existing conceptualisations of social capital in end-of-life care to provide novel perspectives on the role of reciprocity and interdependency between the lay and professional worlds. Conclusion: This study provides a reflexive and critical account of the processes and impacts of compassionate communities work in practice. It situates reciprocal relationships as its foundation and forces an assessment of the nature of power and agency in all interactions. Through the presentation of the new concept of collective social capital, it presents a collaborative and interdependent path forward for new public health and end-of-life care in the future.

Palliative care is branch of medicine, which focuses on improving the quality of life (QOL) of patients with chronic illness such as cancer. Patients suffering from cancer are subjected to physical as well as psychological distress associated with their diagnosis and treatment. The purpose of this study was to introduce palliative care and examine its impact on levels of anxiety and depression in cancer patients. Information regarding the current relevance and growth of the palliative profession, as well as expanding areas of research, was included as part of this study. The literature reviewed in this study found that cancer patients are at high risk for psychological comorbidities such as anxiety and depression. Patients with certain cancer types, social factors, and cognitive makeups may be at the greatest risk for psychiatric problems. The data show a strong connection between high emotional distress levels, low QOL, reduced survival time, and adherence to curative treatment plans. Fortunately, there was significant research showing that palliative intervention can improve psychological distress and avoid unwanted effects on QOL and survival. The results of current studies found promising improvements for patients with cancer; however, there remains a need for replication and development of a universal model of care to validate conclusions.

Background: About 80 percent of the people dying in Sweden are considered to have been in need of palliative care. When death is approaching, due to age or illness, the ill person's and the relatives' needs must be met which is the main aim of palliative care. It has been increasingly common that people choose to be cared for in their own home in the end of life and therefore knowledge of the relatives' experience is important for the healthcare professionals. Aim: To highlight relatives' experience of palliative care at the end of life in the dying person's home. Method: A literature review based on qualitative studies. Eight articles were analyzed in five steps according to Friberg's qualitative content analysis for literature based studies. Results: Three main themes and six sub-themes emerged through the analysis. The main themes were: To fulfill a wish, To experience security and To be a caregiver. Conclusion: In order for relatives to feel confirmed as caregivers and to preserve a good health it is of great importance that the nurse communicates and makes them feel involved by giving them both support, information and the possibility to participate in the care but also to be unloaded. / Denna studie beskriver hur närstående upplever palliativ vård i hemmet vid livets slutskede. I Sverige väljer allt fler personer att vårdas i sitt hem den sista tiden i livet, vilket innebär att det också är fler närstående som är i behov av vård då även deras hälsa påverkas. Därför är kunskap om de närståendes upplevelser viktig för sjukvården. Resultatet i studien baseras på åtta vetenskapliga artiklar där studiens resultat presenteras i tre huvudteman och sex subteman. Resultatet visade att närstående upplevde ett krav och en förväntan att uppfylla den döende personens önskan. De kände även ett behov av att få stöd och information från sjuksköterskan, men också att vara delaktiga och bli bekräftade. Vårdandet påverkade både de närståendes hälsa och relationen till den döende personen, men genom att sjuksköterskan fanns där som ett stöd för dem kunde den betydelsefulla relationen mellan den döende personen och dennes närstående bevaras. Därför har sjuksköterskans närvaro en betydande roll i hur närstående upplever den palliativa vården vid livets slutskede.

Bakgrund: I Sverige är 72 000 individer årligen i behov av palliativ vård. Denna vårdform innebär att sjukdomen inte längre kan botas utan enbart lindra symtom för att nå bästa möjliga livskvalitet. Närstående har en viktig roll i palliativ vård genom att bland annat vara ett stöd till den sjuka. Sjuksköterskan bör vid palliativ vård möta symtom från alla dimensioner och se den sjuke som en helhet. Syfte: Syftet är att beskriva närståendes upplevelser av att leva med en individ som får palliativ vård. Metod: En litteraturöversikt som inkluderat 13 studier, funna i Medline via PubMed och Cinahl, med kvalitativ ansats där närståendes upplevelser har beskrivits. Resultat: Tre huvudteman identifierades: Omvårdnad ur närståendeperspektiv, Mötet med personal och Livets slut. Omvårdnad ur närståendeperspektiv berör områden som ökat ansvar, isolering, att göra allt för den man älskar samt skuldkänslor, tvång, oro och uppoffringar. Upplevelserna kring mötet med personal varierade, både positiva och negativa presenteras, där bland annat vårdform, sjuksköterskans bemötande, kunskap och tidigare erfarenheter påverkade resultatet. Livets slut och det kommande avskedet är ofrånkomligt i palliativ vård och de närstående hanterade frågor kring döendet och döden på olika sätt. Slutsats: Närvaron kring döden gav funderingar på närståendes egna existens. Hur de närstående upplevde vårdpersonalens bemötande speglade deras syn på hur den palliativa vården fungerat. I föreliggande studie har många upplevelser beskrivits, däremot finns en begränsad kunskap om hur de närstående hanterar de känslor som uppkommer. De upplevelser som följs genom denna studie kan sammantaget beskrivas som påfrestande men givande. / Background: In Sweden, 72,000 individuals are in need of palliative care annually. This type of care means that the disease can no longer be cured but only alleviates symptoms to achieve the best possible quality of life. Family have an important role in palliative care by, among other things, supporting the ill one. Palliative care nurses should face symptom from all dimensions and see the ill one as a unity. Aim: The aim is to describe families experiences of living with an individual who receives palliative care. Method: A literature review that included 13 studies, found in Medline via PubMed and Cinahl, with a qualitative approach, where the experiences of families have been described. Findings: Three main themes were identified: Nursing from a family perspective, The meeting with staff and The end of life. Family nursing concerns areas such as increased responsibility, isolation, doing everything for the one you love, but also guilt, coercion, worry and sacrifice. The experiences surrounding the meeting with staff varied, both positive and negative were presented, where, among other things, the form of care, the nurse's treatment, knowledge and previous experiences affected the result. End of life and resignation are inevitable in palliative care and the families dealt with issues of dying and death in different ways. Conclusion: The present of death gave thoughts about the families own existence. How families experienced the healthcare professional’s treatment reflected their view of the palliative care. In the present study many experiences have been described, however there is a limited knowledge about how the families cope with their feelings. The experiences that are followed in this study can be described as strenuous but worthwhile.

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.

A comparative history of the development of palliative care services and policies in England and the Netherlands during the post-war period is presented in this thesis. These countries were chosen as England is the country where the modern hospice movement started, whereas a different set of services developed in the Netherlands. Examples of questions addressed are why the service developments in these two countries differed substantially and how specialist services for the dying related to the health care system. Given the choice to study England and the Netherlands, attention had to be paid to the impact of the acceptance or rejection of euthanasia on the development of palliative care as well. Chapter 1 provides an overview of the thesis and its aims. It also includes a literature review and elaborates on the comparative research approach chosen. Chapter 2 discusses the development of palliative care services and policies in England. The main topics addressed are the establishment, expansion, and diversification of palliative care services by the voluntary sector and the governmental policies that led to an increasingly close connection between these voluntary organisations and the National Health Service. Chapter 3 is an intermezzo that discusses the main characteristics and developments of the health care system in the Netherlands. Chapter 4 considers the role of nursing homes in the development of palliative care in the Netherlands. It is concluded that these institutions cannot be considered the equivalent of the English hospices. Moreover, two projects to improve care for the dying and their attempts to obtain public funding are discussed. Chapter 5 focuses on various models for specialised services for the dying that were developed in the Netherlands during the 1980s and early 1990s. Major differences with the English hospice based model of palliative care existed as volunteers had a central role in providing palliative care in the Netherlands. Moreover, the Dutch government aimed to develop palliative care as a generalism rather than the specialism that it became in England. Chapter 6 covers the period from the mid 1990s to the present. The policy programme that the Dutch government initiated because of the imminent legalisation of euthanasia, and its impact on palliative care are the main topics. Conclusions, illustrations of the policy relevance of these histories, and suggestions for further research are presented in the final chapter.

Communities of practice have been used as a way of sharing practice and developing knowledge. The End of Life Care Education Consortium was formed by three hospice education departments in the West Midlands, United Kingdom, with the support of the Strategic Health Authority, to provide education programmes for healthcare professionals in palliative care. As the Consortium worked collaboratively, I wanted to explore whether there was potential for it to evolve into a community of practice and whether there was scope for communities of practice being utilised in end of life care settings to share and develop practice. The literature review revealed there were no articles written on communities of practice in palliative care settings and demonstrated that the workplace is an important area for learning as new staff learn from more experienced members of the workforce. Communities of practice can be used for experienced staff to learn from each other and share practice with others from outside the community. Case study research was used to explore whether the Consortium had the potential to evolve into a community of practice and if its members learnt from each other. Members of the Consortium were interviewed using semi-structured interviews, documents including my research diary, reports and notes from meetings were also used as data. Although the findings showed that the Consortium was not functioning as a community of practice it did have the key characteristics of one and there is potential for hospices to form communities of practice to enable staff to share practice and support each other. The findings demonstrated that for a community of practice to be successful it requires the support of management to allow staff to take part in community activities, seen as an important part of the organisation’s culture and there needs to be leadership to enable the community to develop. Journal clubs, clinical supervision and multidisciplinary meetings are already in place and these could be ways of healthcare professionals sharing knowledge and learning together. The Nursing and Midwifery Council (2015) state that all nurses and midwives are required to revalidate every three years to enable them to practise as registered nurses; one of my recommendations is that communities of practice could be used to keep staff updated. Inviting healthcare professionals from outside the hospice to take part in community activities would enable knowledge to flow in and out therefore enhancing patient care.