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.

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Hope is meaningful and very important for people – even for people at the last days of their lives. Health professionals can sometimes describe hope in terms of hope for a cure, which may lead to feelings of hopelessness or empty hope for a patient with an incurable disease. In research, there is very little written about hope in the palliative home care context, even more so from the patient’s perspective. The aim of this project was to study how hope changes over time in cancer patients at the palliative phase, and to study the strategies used to cope with these changes. This was studied from the patients’ own perspective and in a home care context, but with the ambition of developing the results into a model or theory. Grounded Theory was the chosen research approach. Two sets of tape-recorded interviews were made with 11 patients in specialized palliative home care – a total of 20 interviews. The patients were also asked to write diaries about changes in their everyday feelings of hope within a 4-week period. Measurements of hope (HHI-S) and symptoms (ESAS) were also made at three occasions. Constant comparison of data was made during the analysis. The results showed that patients’ hope changed over time. Hope was described as a process involving a glimmering core of hope untouched by external circumstances (Study I). Hope was described in different processes, creation of a convinced hope, creation of simulated hope, collection and maintaining moments of hope and gradually extinct hope. The dying patient’s hope can be described as a gradual and successive adaptation process. Strategies for maintaining life were expressed to preserve the meaning in life, to communicate with others about life and death, to involve "fellow travelers" and to change focus. The strategy of preparing for death involved; taking responsibility for the future and seeing possibilities of living on even after death (Study II). The strategies were parallel to, and dependent on each other. It is important that health professionals understand the patient’s own strategies for maintaining life/hope, as well as the patient’s own preparations for death, so that hope is never taken away despite preparations at the end of life. In summary, hope can be interpreted as a changing process over time – a process that can change quickly, but is based on an inviolable core that is not easily moved by external circumstances. It is important that the health care personnel realize that patients simultaneously prepare for their deaths even as they try to maintain hope. Deeper understanding of what hope can mean for a patient can decrease the risk of hope being taken away during one’s final days. / Hopp har stor betydelse för människor, även för människor i livets slutskede. Av vårdpersonal beskrivs ibland hopp som bot, vilket kan leda till att inget hopp alls eller att ett meningslöst hopp förmedlas till en patient med en obotlig sjukdom. Forskningsmässigt förekommer hopp sparsamt beskrivet i den palliativa kontexten, särskilt från patientens perspektiv. Syftet med avhandlingen var att studera hur hopp kan förändras över tid hos patienter med cancer i ett palliativt skede, liksom vilka strategier de använder för att hantera dessa förändringar. Detta har studerats utifrån patientens eget perspektiv i en palliativ hemsjukvårdskontext, men ska sedan utvecklas vidare till en modell/teori. I denna avhandling har Grounded Theory valts som forskningsansats. Bandinspelade intervjuer gjordes vid två tillfällen med elva patienter i specialiserad palliativ hemsjukvård. Det blev totalt 20 intervjuer. Patienterna skrev också dagböcker om de förändringar av deras hopp, som uppstod i vardagen under en period av fyra veckor. Även mätning av hopp (HHIS) och symtom (ESAS) genomfördes vid tre tillfällen. Analysen skedde med den konstant komparativa metoden. Resultatet visade att patientens hopp förändrades över tid och beskrevs i en process med en inre glödande kärna av hopp, som inte påverkades så mycket av yttre omständigheter, men som kunde falna eller flamma upp (studie I). Hopp beskrivs i olika processer som att skapa ett övertygat hopp, ett simultant hopp, som att samla och uppehålla hopp och som ett hopp, som håller på att rinna ut. Den döende patientens hopp kan skildras som en successiv anpassningsprocess. Strategier som upprätthåller liv beskrivs vara att upprätthålla sin egen mening, att samtala om liv och död, att skaffa medresenärer och att byta fokus (studie II). Strategier, som förberedde döden, var att ta ansvar för framtiden och att se möjligheter att leva vidare även efter döden. Dessa tillvägagångssätt var parallella och beroende av varandra. Kunskap hos vårdpersonal om patientens egna strategier att upprätthålla liv/hopp och förbereda död är viktigt, för att inte ta ifrån patienten dennes hopp vid samtidig förberedelse för döden. Sammanfattningsvis ska hopp ses som en föränderlig process över tid och som snabbt kan förändras, men som har en inre glöd, som är mer oantastlig och inte så lätt påverkas av yttre omständigheter. Det är viktigt för vårdpersonal, som arbetar med döende patienter, att känna till att patienter har parallella strategier, som upprätthåller hopp. Ökad kunskap om vad hopp innebär för den enskilde patienten kan minska risken för att hopp fråntas patienten i livets sista tid. / The Glimmering Embers - experiences of hope among cancer patients in palliative home care / Maintaining hope when close to death: insight from cancer patients in palliaitve home care

The spiritual care provided by nurses is not obvious. The literature on spiritual care within the context of palliative care nursing is sparse and contradictory. None of the research is from the Canadian perspective. Thus, this project examined the meanings made by palliative care nurses as they provided spiritual care to people who were dying at home. This qualitative study utilized the methodology of the naturalistic inquiry. From a population of 47 Canadian palliative care nurses who provided home nursing in Kingston, Ontario, Canada, six nurses participated in semi-structured conversations about their experience of providing spiritual care within the context of palliative care. Three major themes emerged : the nurses' focus of spiritual care on the time surrounding the dying and the death; the nurses' beliefs about spirituality, religion, and their own work; and the nurses' evaluation of their caregiving as evidenced by the 'Good Death'. The nature of the nurses' spiritual care was of guiding, doing the unusual, relating to distress as well as relating to the one cared-for with love and friendship. The nature of the spiritual care is discussed from the perspective of caring as moral grounding and cultural imperative. Consideration is given to empowering nurses through liberating the ethic of care. What the nurses know about spiritual caregiving is looked at through the framework of the art of nursing, the nurses' beliefs about spirituality, and the hidden work of nursing. As well, the nurses' evaluation of their spiritual caregiving resulting in 'good death' and 'death with dignity' is explored. Noting incongruence between the nurses' personal beliefs and religiosity and what they want for their patients, the author offers the possibility that caregiving itself has become the religious expression of the nurses. Implications for nursing encompass the education of nurses, the practice of nursing, as well as the inclusion of nursing knowledge at the policy and budgetary levels. Nursing education must change, from talking about wholistic care, to teaching how to care for the whole person by including care of the spirit in the curriculum. Nurses who have knowledge and experience in caring for spiritual distress need to share their knowledge and start the process of mentoring other nurses into the practice of truly wholistic care. As well, nurses must become advocates and educators at the institutional and governing levels in order that human needs, including spiritual needs, are included in the decision making about health care policy and budgets / Master of Nursing (Hons)

Depression is poorly recognised, under-assessed and under-treated in patients receiving palliative care for a life-limiting illness. There are barriers to assessment and diagnosis, and limited access to specialist clinicians who might assist in these complex assessments and who could provide options for treatment. The three studies presented, using different research methodologies, and using both qualitative and quantitative analysis, seek to clarify these issues and to provide some solutions. A questionnaire was sent to all Palliative Care Services (PCS) in Australia. Questions included what part specialist psychological clinicians played in multi-disciplinary team meetings and in the treatment or coordination of patient care. Very few PCS used a valid screening instrument for psychological distress and very few had regular support from a psychiatrist or psychologist. Many did not have access to social work support. There are two competing issues with regard to recognising and assessing depression in palliative populations. A rapid reliable screen that points to a likely problem would be useful, but also there is a need to understand something of the patient experience of depression. In the second study, the one- and two-item screening instruments widely used in palliative care are examined and limitations that have been found in other settings are confirmed. A new novel screening tool is developed from this data and tested empirically. This algorithm is short, has good psychometric properties and is validated for an Australian palliative care population. Depending on the response pattern it is possible to identify that a particular patient has significant symptoms of depression by asking between one and four questions. Professional carer and patient acceptability of the questions is high. The understanding of the experience and symptom profile of depression in Australian palliative care patients is addressed in the third study. Patients and family carers were recruited prospectively from palliative care and oncology ambulatory clinics of two teaching hospitals in an Australian capital city. The Geriatric Depression Scale (GDS) was administered to the patient and the Collateral Source version of this instrument was asked of the carer. A subset of this sample completed the measures twice. The results using this 30-item scale were then compared with all the known previously published short versions of this scale. Two short forms met as many psychometric criteria as the longer forms. None of the versions of the GDS showed sufficiently high correlations between carer-completed and patient-completed forms. The frequency of symptoms was also assessed. Patients more frequently reported fatigue and anhedonia than depressed affect. Despite many screening instruments being available for depression, their use is limited in Palliative Care Services. Although these studies have validated several options for Australian palliative care patients, the issues behind the low uptake rates for screening have not been resolved. The final chapter of this thesis constructs known and potential barriers into a logical structure and then offers some solutions to improve access to mental health professionals by considering service models and applying this theory to the problem of depression and its assessment in palliative care populations.

<p>One third of all Swedish people will suffer in cancer. Pain is a common symptom in cancer patients. The pain is subjective and includes several dimensions. The dimensions of pain are the physical, psychological, social and spiritual. This is a literature review and the aim with this study was to identify the pain experience in patients with cancer receiving palliative care. Nineteen articles were analysed. The result shows that the physical pain was experienced as chronicle or episodic pain.</p><p>Psychological pain included fear, distress and anxiety. Social pain was a result of loss of relationships and ability to take part of activities. Spiritual pain was expressed as feelings of meaningless, hopelessness and fear for the future. Different kinds of dimensions cooperate with each other. They can strengthen each other and one dimension of pain can lead to another. The articles that have been analysed focus on several dimension of pain. To be able to relieve the pain and other symptoms, the nurse needs to have a holistic view of patients and to be aware of how all dimensions of pain that is expressed by the patient.</p>

<p>The aim of the present literature review was to describe and evaluate the effects and experiences within the complementary approaches such as aromatherapy, tactile massage and acupuncture amongst palliative care patients. Search through Medline (through Pub Med) database and additional manual search was conducted. In total 16 articles fulfilled the inclusion criteria and were reviewed. The result was presented under respectively category: aromatherapy, tactile massage and acupuncture. Physical and psychological effects as well as experiences from the treatments were also documented under the different complementary approaches. Aromatherapy and tactile massage were found to be more effective for reduction in anxiety and depressive mood whilst acupuncture had a greater impact on physical symptoms such as fatigue/insomnia, nausea/vomiting and chemotherapy induced emesis and also xerostomia. Not only did the patients experience relaxation and peacefulness but also feelings of comfort from the aromatherapy and tactile massage therapies. The result also showed that acupuncture felt invigorating and generated more energy for the patients to cope with more activities in their daily lives. In conclusion the complementary therapies aromatherapy, tactile massage and acupuncture are effective and alleviating and therefore very beneficial for patients in palliative care. The complementary therapies is a perfect and valuable tool for symptom management and strengthens the caregiver/patient relationship.</p>

Objective: A significant number of children suffer from life-limiting illnesses, with many dying each year in the U.S. Services, beyond standard medical care, aimed at increasing overall quality of life for children with life-limiting illnesses, are greatly needed within and outside of our hospitals. Palliative care is conceptualized as treatment provided to relieve symptoms and improve quality of life. Despite the empirically supported benefits of providing pediatric palliative care, only a small percentage of pediatric patients actually receive these services. Thus, there is a great need for the development and provision of these services. The first aim of the current study was to compare results from Holtz Children’s Hospital (HCH) at the University of Miami with those from Lucile Packard Children's Hospital (LPCH) at Stanford University, where a survey assessing pediatric healthcare providers’ palliative care needs was originally developed. The second aim was the modification and further development of the measure, including an evaluation its psychometric properties. The third aim was to identify the educational and training needs of healthcare providers in providing pediatric palliative care. The fourth aim was to evaluate whether completing the survey improved awareness of a palliative care team. Method: Two hundred and twenty five healthcare providers at HCH completed the Survey on Pediatric Palliative Care for Healthcare Providers (SPPCHP). Participants were diverse with regards to ethnicity/race and profession. Results: Healthcare providers at both hospitals reported feeling inexperienced in similar aspects of delivering palliative care and desired further training and support. The SPPCHP demonstrated strong internal consistency and good construct validity, evidenced in factor analyses. Pediatric healthcare providers at HCH reported only feeling “somewhat” experienced in all aspects of pediatric palliative care and rated families’ inability to accept terminal diagnosis as the top barrier to providing this care; half of healthcare providers reported not receiving adequate support. Although referrals did not increase six months after study completion, awareness at the hospital was improved. Conclusions: Clinical implications include the need for systematic training and support in palliative care for a range of pediatric professionals, with an emphasis on addressing key barriers to care. Given the similarity of the findings at HCH and LPCH, these results appear generalizable to a variety of children’s hospitals.

One third of all Swedish people will suffer in cancer. Pain is a common symptom in cancer patients. The pain is subjective and includes several dimensions. The dimensions of pain are the physical, psychological, social and spiritual. This is a literature review and the aim with this study was to identify the pain experience in patients with cancer receiving palliative care. Nineteen articles were analysed. The result shows that the physical pain was experienced as chronicle or episodic pain. Psychological pain included fear, distress and anxiety. Social pain was a result of loss of relationships and ability to take part of activities. Spiritual pain was expressed as feelings of meaningless, hopelessness and fear for the future. Different kinds of dimensions cooperate with each other. They can strengthen each other and one dimension of pain can lead to another. The articles that have been analysed focus on several dimension of pain. To be able to relieve the pain and other symptoms, the nurse needs to have a holistic view of patients and to be aware of how all dimensions of pain that is expressed by the patient.

The aim of the present literature review was to describe and evaluate the effects and experiences within the complementary approaches such as aromatherapy, tactile massage and acupuncture amongst palliative care patients. Search through Medline (through Pub Med) database and additional manual search was conducted. In total 16 articles fulfilled the inclusion criteria and were reviewed. The result was presented under respectively category: aromatherapy, tactile massage and acupuncture. Physical and psychological effects as well as experiences from the treatments were also documented under the different complementary approaches. Aromatherapy and tactile massage were found to be more effective for reduction in anxiety and depressive mood whilst acupuncture had a greater impact on physical symptoms such as fatigue/insomnia, nausea/vomiting and chemotherapy induced emesis and also xerostomia. Not only did the patients experience relaxation and peacefulness but also feelings of comfort from the aromatherapy and tactile massage therapies. The result also showed that acupuncture felt invigorating and generated more energy for the patients to cope with more activities in their daily lives. In conclusion the complementary therapies aromatherapy, tactile massage and acupuncture are effective and alleviating and therefore very beneficial for patients in palliative care. The complementary therapies is a perfect and valuable tool for symptom management and strengthens the caregiver/patient relationship.