Background: To be the close relative of a terminally ill person, who is receiving special palliative care, is a life changing experience. According to the guide lines for palliative care both the patients and their family members have the right to support, and to be part of the caring process. For nurses to be able to meet the needs of relatives, understanding their experience of special palliative care is crucial. Aim: To highlight the family´s experience of palliative care from specialist palliative operations. Method: A method based on the analysis of qualitative research was used, in order to contribute to evidence-based care. Ten scientific articles were analysed. Results: Emotions of guilt and relief were common amongst family members. The family members experienced that the nurses where a safe harbor when the family members received the support they needed. Sometimes the family members felt as if their homes and their private sphere became a workplace. Conclusion: Honest, straight, and clear communication was of great importance. For family members to be able to ask nurses for help and to feel supported in different situations was also important. The physical symptoms of death approaching became symbols of grief and sorrow.

Background:  The world’s population is ageing rapidly. Each year an estimated 40 million people are in need of palliative care where Nurses play a central role. Aim: To describe Nurses experiences of caring for dying people at the end of life Method: A literature study based on nine qualitative articles. Results: The results of this literature study reveals that nurses experienced the work of caring for dying people at the end of life both as  meaningful and challenging.  Nurses experienced organizational constraints and used coping strategies in order to manage their work.  Conclusion:  End of life care is about ensuring a good death for dying people. The work involves both positive and negative experiences for nurses. The literature study gave an important insight into the challenges nurses face in Palliative care.   Keywords: experience, nurses, palliative care / Bakgrund: Befolkningen i världen blir allt äldre. Årligen är ca 40 miljoner människor i världen i behov av palliativ vård. Sjuksköterskan anses ha en nyckelroll inom den palliativa vården. Syfte: Att beskriva sjuksköterskans erfarenheter av att vårda personer vid livets slut. Metod: En litteraturstudie  genomfördes baserad på 9 kvalitativa studier. Resultat: Litteraturstudiens resultat visar på att sjuksköterskorna upplevde arbetet med att vårda döende personer som både meningsfullt och utmanande. Sjuksköterskorna upplevde organisatoriska begränsningar och använde sig av coping strategier för att klara sitt arbete. Slutsats: Vård vid livets slut handlar om att säkerställa en god död för den döende personen. Arbetet innebär både possitiva och negativa erfarenheter för sjuksköterskan. Litteraturstudien gav en viktig insyn i de utmaningar sjuksköterskan möter inom palliativ vård.   Nyckelord: experience, nurses, palliative care

Philosophiae Doctor - PhD / Background: Palliative care is specialised health care to support people living with a terminal illness, and their families. Palliative care aims to prevent and relieve suffering, to help people to live as well as possible until they die, and to support the processes of dying and bereavement. Palliative care is holistic care provided by Emergency and Oncology Nurses caring for cancer patients. Palliative care protocols for Professional Nurses working in Emergency Units and Oncology Departments are not always posted or in full view in the government hospitals of the Western Cape. The researcher had noted that the development of a palliative care protocol would be unique in its use at the three targeted government hospitals. Aims and Objectives: This study focused on the development and implementation of palliative care protocols for Emergency and Oncology Nurses in the targeted government hospitals of the Western Cape, i.e., protocols could be beneficial for cancer patients and their families. The overall aim of the research was to develop applied palliative care protocols for Emergency and Oncology Nurses to provide best practice palliative care nursing for Oncology Patients who may present at any one of three Western Cape Provincial Hospitals.

Thesis advisor: Kathleen McInnis-Dittrich / Cancer caregivers are key stakeholders across the cancer trajectory, particularly in the final weeks of life and the bereavement period that follows. Current measures are limited in capturing caregiver assessment of the quality of end-of-life (EOL) care. Because none include caregiver perception of patient suffering or prolongation of death, the author sought to develop and validate a new measure of caregiver-perceived quality of EOL care that includes these dimensions. Data for this study comes from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). CwC investigators interviewed cancer patients and caregivers prior to the patient's death, and then caregivers again following the patient's death, on a range of psychosocial issues related to EOL care and bereavement. The present study represents a refinement of the author's previous work in developing and validating the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a comprehensive measure of caregiver-perceived quality of EOL care. Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The author examined the new measure's factor structure, and evaluated its reliability (using Cronbach's α) and convergent validity (via associations between CEQUEL and key EOL outcomes). CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78). Higher scores (indicating better perceived quality of care) were positively associated with therapeutic alliance (ρ=.13; p≤.05) and hospice enrollment (z=-2.09; ≤;.05), and negatively associated with bereaved caregiver regret (ρ=-.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z=-2.06; p≤.05). Scores did not vary by caregiver characteristics other than religious affiliation, with Catholics scoring lower than non-Catholics, and those without religious affiliation scoring lower than those with an affiliation. Models predicting CEQUEL scores were compared using multiple regression analysis and AICc values. In unadjusted analyses, dying in a hospital, inpatient hospice length of stay (LOS) < 1 week, patients feeling seen as a whole person by their physician, and caregiver religiosity predicted CEQUEL scores. Only dying in a hospital (B=-1.65, SE=0.42, p=0.000) and inpatient hospice LOS < 1 week (B=-1.87, SE=-.69, p=0.008) remained significant in adjusted analysis. These findings suggest that CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. This study also identifies key factors that can be modified to improve caregiver evaluation of quality of care and associated bereavement outcomes. CEQUEL is the first scale of its kind to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment. Implications for research, clinical practice and policy are discussed. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Graduate School of Social Work. / Discipline: Social Work.

O objetivo desta dissertação foi investigar os Cuidados Paliativos. Por tratar-se de profissionais que propõem e se dedicam a uma modalidade de assistência que colocam como diferenciada em relação aos outros tipos de assistências ofertadas, o exame dos elementos que os diferencia em relação aos demais poderia iluminar questões nos outros tipos de assistências prestados que antes passariam despercebidos, apontando as aproximações e os distanciamentos entre os cuidados paliativos e as outras abordagens. Procurou-se, para tanto, múltiplas entradas e abordagens do Cuidado Paliativo: (1) uma pesquisa crítica dos manuais e dos documentos estruturantes dos Cuidados Paliativos, a fim de obter-se melhor aproximação em relação ao objeto, a partir de uma perspectiva histórica e teórica, e (2) um trabalho de campo, que acompanhou reuniões de trabalho regulares de duas equipes distintas em instituição pública de saúde: o grupo de Cuidados Paliativos e um segundo grupo, de outra especialidade, para auxiliar, por meio de comparação, o exame dos Cuidados Paliativos. Por meio do exame dos documentos e do que ocorria nas reuniões, foi possível delinear, por meio de comparação, os elementos de aproximação e de distanciamentos entre distintas abordagens e cuidados à saúde, que iluminaria em quais momentos e em que aspectos poderiam ser apontadas diferentes formas de atenção e abordagem à assistência oferecida. Apesar de se acentuar as competências humanitárias e de personalidades individuais para o exercício da prática paliativa, procurou-se por uma abordagem que explicitasse as competências e as especificidades deste campo profissional em relação aos demais, que justificariam o reconhecimento dos Cuidados Paliativos como um campo de conhecimento e como uma área de atuação ou especialidade diferenciada. / This dissertation aims investigate the Palliative Care. As it is moved by specific professionals, who propose and dedicate to a specific care modality dissimilar to the other ones, the exam of elements that distinguishes them from the others may highlights some aspects that would pass unnoticed. This approximation was by multiple entrances and approaches to palliative care: (1) a critical lecture of the manuals and documents that structure the palliative care, in order to obtain better approximation to the object from a historical and theoretical perspective, and (2) a field study, which followed the regular meetings of two different teams working in public health institutions: the palliative care group and a second group from another specialty, that, by comparison, could bring us better examination of Palliative Care. Through the examination of the documents and what occurred at the meetings, it was possible to outline, by comparison, the elements of closeness and distances between different approaches and health care, which would illuminate at what time and in what aspects could be identified different forms of care and approach to assistance offered. Although they emphasize humanitarian and individual personalities to the exercise of palliative practice skills is sought by an approach that expose skills and the specifics of this professional field in relation to the other, that would justify the recognition of palliative care as a field of knowledge and as a practice area or specialty differentiated.

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

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.