Student Number : 7916069 - MA research report - School of Human and Community Development - Faculty of Humanities / This qualitative study set out to explore the idea of a good death through in-depth interviews with six terminally ill patients with cancer aged between thirty-seven and fifty-two, in other words in mid-life. Thematic content analysis was used to examine overt and covert themes revealed in semi-structured interviews that had been transcribed verbatim. Significant fear of dying was revealed and although respondents did not seem to have a conscious idea of a good death, they had a clear concept of good dying. Two key components of good dying were not being in pain or distress from physical symptoms, and wanting to drift off into a final “sleep” rather than being fully alert until the end. It was noticeable that, whether or not patients had religious convictions, relatively little attention appeared to be paid directly to what might or might not follow the moment of death itself, for example an afterlife. Preparation for good dying included completing a will, sorting out financial affairs and, for some patients, planning a funeral. At times this preparation also included trying to mend conflicted relationships and make plans for the ongoing care of family members. It is postulated that these preparations helped re-constitute a sense of order that had been shattered by the chaos of being declared terminally ill at a time of life when this was non-normative. Moreover, taking care of practical needs re-established a sense of agency, helped achieve some sense of closure and symbolised a measure of acceptance of their dying status. Respondents did not seem to experience external pressure from others to die in a certain way, although two people were particularly aware of their influence on how others in the family felt and thus tended to pretend to feel better than they did.

Nursing Care for Terminal Patients in Intensive Care Units by Pervell Dunbar Project Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Nursing Practice Walden University August 2015 Although the goal of the ICU has always been to save lives, ICU now additionally provides end-of life (EOL) care. The objective of this project was to provide ICU nurses with a comprehensive awareness of physical, emotional, and spiritual EOL care issues of patients and their families in order to be better equipped to handle EOL care. The framework used was Jean Watson's Caring model (10 Caritas). A literature review revealed a poster previously used by a major health organization as a conversation starter to facilitate decision-making among ICU nurses, EOL patients, and their families related to EOL issues. The purpose of this quality improvement initiative was to introduce and implement an educational EOL tool that would engage patients and family members in meaningful and useful conversations with ICU nurses. Twenty seven ICU nurses were selected by the unit's director to attend a PowerPoint presentation on the use of the EOL educational poster. Four ICU nurses were chosen by the director to be champions for this project. After the presentation, there was a period for questions and answers, and the ICU nurses were requested to give feedback on the presentation. The result from the feedback revealed that EOL care is outside previous practice and may require extra education and support. These comments substantiated similar conclusions from other researchers as described in this paper. With an increase in EOL training for ICU nurses and the implementation of EOL teaching tools like the poster used in this study, ICU nurses may be better able to have conversations with EOL patients and families, thus improving patient care.

Bakgrund: Sjuksköterskor möter ibland obotligt sjuka patienter som uttalar en önskan om att få avsluta sitt liv i förtid och detta är både ett komplext och kontroversiellt ämne som diskuteras flitigt runt om i världen. En uttalad önskan om att få avsluta sitt liv i förtid kan ha många olika betydelser och bör förstås utifrån varje unik patients egen sjukdomssituation, livshistoria och upplevelser. Syfte: Att undersöka hur sjuksköterskor upplever och hanterar mötet med terminalt sjuka patienter som uttalar en önskan om att få avsluta sitt liv i förtid. Metod: En litteraturöversikt har gjorts och baseras på åtta vetenskapliga artiklar publicerade mellan år 2001-2010. Analysen har skett genom en kategorisering av resultaten och Erikssons teori om lidande har utgjort den teoretiska utgångspunkten för diskussionen. Resultat: När patienter, på grund av vad de upplever som ett omänskligt lidande, uttalar en önskan om att få avsluta sitt liv i förtid kan sjuksköterskor uppleva maktlöshet, moralisk stress samt en önskan om kontroll. Sjuksköterskor hanterar detta genom god kommunikation och att dra personliga gränser. De uttrycker även ett behov av stöd och av att få samtala. Diskussion och slutsats: Många sjuksköterskor upplever en rädsla över att förlora kontrollen över situationen vilket kan leda till att de upplever osäkerhet och svårigheter när de vårdar terminalt sjuka patienter som önskar avsluta sitt liv i förtid. Sjuksköterskor kommer troligtvis alltid att möta dessa patienter och det finns därmed ett behov av stöd och riktlinjer. / Background: Nurses sometimes meet terminally ill patients who express a wish to end their life untimely and this is a complex and controversial issue that is discussed all around the world. An expressed wish to end life untimely can mean many things and must be understood based on the situation of the disease, life history and experiences of every unique patient. Aim: To explore how nurses experience and handle the meeting with terminally ill patients who express a wish to end their life untimely Methods: A literature review has been made and is based on eight scientific studies published between years 2001-2012. Categorizing the text of the articles has done the analysis and Eriksson ́s theory about suffering from illness is the theoretical framework that has been used. Result: When patients, because of what they perceive an inhumane suffering, state that they would like to end their life untimely nurses can experience powerlessness, moral distress and a wish to control the situation. Nurses handle this through good communication and by drawing their own personal line. They also express a need of support and to talk about this. Discussion and conclusion: Many nurses experience a fear of losing control over the situation which leads to feelings of insecurity and difficulties when they care for terminally ill patients who wish to end their life untimely. Nurses will probably always get in contact with those patients and therefore there is a need for support and guidelines.

The goal of my thesis I have chosen is to identify the way hospice care is perceived in the Telč region by family members of terminally ill patients. I based my thesis on available specialised literature, current legislation and internet sources dealing with home hospice care. In the first theoretical part, I deal with the definition of hospice care trying to explain the term of general and specialised care that have a common objective, namely dignified and tranquil dying. The second section deals with family in the context of palliative care that plays the key role in the patient care. If the family decides to care for the incurable patient at home, it is vital to support it. Moreover, in this section I define needs of family members summarised in three core topics. Including the care for the patient family that I included to the hospice care as not only the patient suffers from the illness but all his/her family does. That means that each family member needs palliative care. The end of this section deals with mourning of the survivors. The core point is not leaving them alone in their mourning, to have them accompanied by someone in their grief. The third chapter focuses on the role and position of the patient. It changes when a seriously ill human becomes dependent on third party´s help losing his/her capacity to fulfil his/her professional and family role. This enormously affects his/her physical and emotional condition. Moreover, I describe needs on terminally ill people that change when the patient approaches his/her death depending on his/her family and social situation. It changes also during his/her adaptation to adverse diagnoses and forecast and emergence of difficulties and complications. I describe four groups of needs: biological, psychological, social and spiritual. The fourth chapter characterises home hospice care that is described as specialised palliative care provided in the home environment amidst patient´s family and friends. I describe the history of Czech hospice care stating that before the WWII it was quite normal to care for terminally ill patients at home till the end. This trend emerges again in the 90s. I define objectives of the home hospice care and related activities. The fourth chapter includes the description of a multi-disciplinary team and funding of home hospice care. In the fifth chapter, I characterise the home care organisation that try to expand the range of services by including the home palliative care and also deal with the home care history, objectives, delimitation of the scope of activities, agency human resources management and home funding methods. In the sixth chapter, I represent the organisation Sdílení, o.p.s. Telč, services provided by it and basic duties according to the Act No.108/2006 Coll. as well as the mission and objectives of this organisation concentrating on help and support of seriously ill people and their family members/friends in such difficult life situation. The key objective of Sdílení is to preserve maximum possible self-sufficiency and dignity of seriously ill people and support of families that are able to find the courage and force to accompany a terminally ill family member to the end of his/her life. In the practical part of my thesis, I analyse data collected by means of qualitative research based on an inquiry in the form of semi-standardised and open-code processing. Who was included to the basic file were family members of terminally ill patients who were divided to two parts. The first group consists of 3 respondents who were entrusted to the care of the home hospice Sdílení. The second group are 3 respondents entrusted to the Home Care hospice. In the practical part, I describe the process of collection of data, record results of the interview process by the open-code method.

Bakgrund: I Sverige vårdas döende patienter både på hospice och på allmänna vårdavdelningar. Vissa av dessa patienter uttrycker en önskan om att få påskynda döden. Sjuksköterskor beskriver ibland en osäkerhet i hur de ska bemöta dessa patienter och vad denna önskan består i. Det kan finnas olika bakomliggande orsaker till en förfrågan av den här typen och en del av dessa kanske går att åtgärda. Syfte: Att beskriva bakomliggande faktorer till att vissa svårt sjuka patienter önskar påskynda sitt döende. Metod: En litteraturstudie baserat på 11 vetenskapliga artiklar genomfördes. Resultat: Rädsla inför lidande i framtiden visade sig vara den mest förekommande faktorn till att vissa patienter önskade påskynda döendet. Fler bidragande orsaker var svåra symtom (särskilt smärta), förluster av bland annat identitet och värdighet, samt en känsla av att vara en börda. Kombinationen av flera faktorer orsakade ett svårt lidande för patienten, och väckte en önskan om få avsluta livet innan lidandet blev för stort. Slutsats: Svårt sjuka patienters önskan om en påskyndad död betyder inte alltid att de önskar att dö, utan kan vara en följd av svåra smärtor eller annat lidande. Om dessa faktorer kan kontrolleras finns kanske en möjlighet att patientens lidande minskar. Klinisk betydelse: Denna studie bidrar till en ökad förståelse hos sjuksköterskor om vilka faktorer som påverkar patientens välbefinnande i livets slutskede. Genom att uppmuntra till ökad medvetenhet kring de riktlinjer och åtgärder som finns, framför allt i den allmänna vården utanför hospice, kan bemötandet av dessa patienter förbättras. / Background: In Sweden dying patients are cared for both in hospices and at ordinary wards. Some of these patients wish to hasten their death. Nurses sometimes describe insecurity in how to respond to a patient‟s death wish. There can be different reasons why a patient asks for euthanasia, some may be possible to eliminate. Aim: The aim of this study was to describe why some terminally ill patients wish to hasten their death. Method: A literature review based on 11 scientific papers was made. Findings: Fear of suffering in the future turned out to be the most common contributing reason to why patients wanted to end their lives. Other reasons were severe symptoms (especially pain), loss of identity and dignity, among other things, and feelings of being a burden. A combination of different factors led to a severe suffering for the patient, and a wish of ending life before the suffering grew too severe. Conclusion: Severely ill patient‟s wishes to hasten death do not necessarily mean they want to die, but can be an expression of a difficult pain or suffering. If these factors can be controlled or eliminated, there is a possibility that the patients suffering decreases. Clinical significance: This study contributes to a better understanding among nurses about the factors that influences patient‟s wellbeing at the end of life. By encouraging to a raised awareness of the existing guidelines and interventions, especially in the primary care outside of hospices, the treatment of these patients can improve.

Bakgrund Den palliativa vårdens mål är att lindra lidande och främja livskvaliteten för patienter ilivets slutskede. Det finns olika typer av lidande såsom fysiska, psykiska och existentiellavilket betyder att lidandet behöver mötas ur ett multidimensionellt perspektiv. Ensammanställning av palliativa patienters beskrivning av en värdig död kan utökasjukvårdspersonalens kunskap och förståelse om patienternas prioriteringar, behov ochönskningar i livets slutskede. Syfte Syftet var att sammanställa palliativa patienters beskrivning av en värdig död. Metod En icke-systematisk litteraturöversikt, baserad på 20 kvalitativ och kvantitativavetenskapliga originalartiklar inhämtades från databasen PubMed med hjälp av sökord iolika kombinationer. Artiklarna valitetsgranskning utifrån Sophiahemmet Högskolasbedömningsunderlag för vetenskaplig kvalitet och klassificering. Resultatetsammanställdes och analyserades sedan med en integrerad dataanalys för att identifieralikheter och skillnader i resultatet. Resultat I sammanställningen av resultatet identifierades tre huvudkategorier: Minskat livslidandegenom ökad autonomi, Minskat sjukdomslidande samt minskat vårdlidande. Resultatetvisade att få dö med minimerat lidande, att få dö med autonomin i behåll, samt att få dö iden miljö och runt de man önskar är de viktigaste aspekterna för en värdig död. Slutsats Då sökningar efter relevanta artiklar gav betydligt fler träffar på artiklar med syfte attbelysa vårdpersonalens eller närståendes perspektiv på vad en värdig död innebär är ämnetpalliativa patienters beskrivning av en värdig död något som det bör forskas vidare på föratt förbättra just deras upplevelse av sin sista tid i livet. / Background The goal of palliative care is to relieve suffering and promote quality of life for patients inthe final stages of life. There are different types of suffering such as physical,psychological and existential, which means that suffering needs to be met from amultidimensional perspective. A compilation of palliative care patients' description of adignified death can increase healthcare professionals' knowledge and understanding ofpatients' priorities, needs and wishes at the end of life. Aim The aim was to compile palliative care patients' description of a dignified death. Method A non-systematic literature review, based on 20 qualitative and quantitative scientificoriginal articles were obtained from the PubMed database using search terms in severalcombinations. The articles have undergone a quality review based on Sophiahemmet University’s assesment documents for scientific quality and classification. Results werecompiled and then analyzed using an integrated data analysis to identify similarities anddifferences in the results. Results In the compilation of the results, three main categories were identified: Reduced sufferingof life through increased autonomy, Reduced suffering from illness and reduced sufferingfrom care. The results showed that being able to die with minimized suffering, being ableto die with autonomy preserved, and being able to die in the environment and around thoseone wishes are the most important aspects for a dignified death. Conclusions As searches for relevant articles gave several hits on articles with the aim of elucidating theview of the healthcare staff or relatives on what a dignified death means, the subject ofpalliative care patients’ view on a dignified death is something that should be furtherresearched in order to improve their experience of their last time in life.

This is a dissertation Programme Postgraduate Sensu Strictu Nursing, School of Nursing and Pharmacy, Federal University of Alagoas. Given that cancer at some point in evolution of the disease patients need to solve food problems, nursing adopts guidance to patients and their families as part of their care process, thus seeking a comprehensive and humane care. Based on this finding , this paper focuses the response of family members of cancer patients to dietary changes presented by the patient seriously ill. Aims to identify the experience of handling the family regarding the power of family severely affected by cancer at home. Qualitative, descriptive and exploratory survey conducted via guided by the Family Management Style Framework model interviews - FMSF , conducted with 10 family caregivers home. The results indicate that the sample had as main characteristics the fact that the caregiver being a woman, aged 51-60 years percapta low family income and parental great proximity to the patient. The families identified the food situation as being inappropriate; view The food usually eaten to cause health disorders in the critically ill patient and difficulty in providing the satisfaction of the biopsychosocial demands related to the supply of food. From the speech was possible to describe the behavior of management having the family caregiver modified the patient's diet in line with what you believe is a healthy, family caregiver modified the preparation and supply of the diet, the family caregiver changed his own attitude. Thus, the consequence perceived by the caregiver which were reflected in the discovery of effective strategies and confirmation of their previously developed skills. / Tendo em vista que os pacientes oncológicos em algum momento de evolução da doença necessitam resolver problemas alimentares, a enfermagem adota a orientação aos pacientes e seus familiares como parte de seu processo cuidar, buscando assim uma assistência integral e mais humana. Com base nesta constatação, este trabalho tem como objeto a resposta dos familiares de pacientes oncológicos às alterações alimentares apresentadas pelo doente gravemente enfermo. Teve como objetivos conhecer a experiência de manejo da família referente a alimentação do familiar gravemente acometido pela doença oncológica no domicílio. Pesquisa qualitativa, descritiva e exploratória realizada através de entrevistas norteadas pelo modelo Family Management Style Framework - FMSF, com 10 cuidadores familiares. Os resultados apontam que a amostra teve como características principais o fato do cuidador ser mulher, na faixa etária de 51 a 60 anos, baixa renda familiar percapta e grande proximidade parental com o paciente. As famílias identificaram a situação alimentar como sendo inapropriada; a comida usualmente ingerida vista como causadora de transtornos a saúde do paciente gravemente enfermo e, tendo ainda dificuldade em proporcionar a satisfação das demandas biopsicossociais relacionadas ao fornecimento da alimentação. A partir das falas dos sujeitos foi possível descrever o comportamento de manejo tendo o cuidador familiar modificado a dieta do paciente em consonância com o que acredita ser uma alimentação saudável; a modificação do preparo e oferta da dieta; além do familiar ter modificado sua própria atitude quando não foi possível alterar a do paciente. Neste movimento, a consequências percebidas pelo cuidador se refletiram no descobrimento de estratégias eficientes na condução do manejo do problema alimentar e na confirmação de suas habilidades previamente desenvolvidas. Contudo, com o agravamento característico da evolução do câncer, o familiar se viu diante de um problema gradativo com evolução negativa, no qual percebeu-se impotente frente as questões de manejo.

Made available in DSpace on 2015-05-08T14:47:27Z (GMT). No. of bitstreams: 1 arquivototal.pdf: 1343544 bytes, checksum: 157df81d759f3b6cb754d5af82202f53 (MD5) Previous issue date: 2011-12-01 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Palliative care are considered as a care philosophy, whose scope is to provide to patients without therapeutic possibilities of cure and their families a better quality of life, being its application of great importance in the context of Primary Care. OBJECTIVES This study has the following objectives: to investigate the understanding of professionals working in FHS, in what concerns to Palliative Care and its therapeutics modalities; to identify, in the view of professionals from FHS, the constitution of Palliative care team for Basic Attention; to verify the possibilities and limitation of implementing Palliative Care in Basic Attention; from the discourse of Health professionals. METHODOLOGY Its about and exploratory research with qualitative approach. The scenario of investigation consisted of family care units belonging to Sanitary District IV, located in the city of João Pessoa (PB). Participated in the work 30 professionals from FHS, being ten doctors, ten nurses and ten dental surgeons. Data collection occurred between July and September 2011. DATA ANALYSIS empirical material was analyzed through content analysis technique, from the following phases: pre-analysis; material exploration; treatment of results. Data obtained by means of testimonies of investigation participants were grouped into the following thematic categories: Palliative Care conceptual aspects and therapeutic modalities (with their respective subcategories: Palliative Care promotion of life quality for patients without possibilities of cure; therapeutic modalities in palliative care); Palliative Care in Basic Attention team formation, possibilities and limitations. RESULTS: This study showed, from the vision of professionals involved in the study, the valuation of Palliative Care, considered as a modality of care that aims to minimize the suffering of the patient without therapeutic possibilities of cure and the one of their families through an assistance guided in humanization. On the other side, some of the study participants had an incompatible comprehension with the relevant literature to Palliative Care. Results pointed out that doctors, nurses and dental surgeons believe in the possibility of implementing this modality of care in basic Attention, since some need are met, such as: team training and development of a national policy for palliative care. FINAL CONSIDERATIONS We consider that this study opens new horizons in the field of scientific production, in assistance and in teaching on palliative care in Basic attention. In view of reduced quantum of studies directed to the respective thematic in the context of national literature. We hope, therefore, that this research can subsidize new investigation exploring the interrelationship of Palliative Care with Basic Attention, since it is an innovative practice in the referred field, necessitating a greater spread with managers, professionals of Health, in particular the ones from FHS, students and researches from this area. / Os Cuidados Paliativos são considerados como uma filosofia do cuidar, cujo escopo é o de proporcionar aos pacientes sem possibilidades terapêuticas de cura e seus familiares uma melhor qualidade de vida, sendo a sua aplicação de suma importância no âmbito da Atenção Básica. OBJETIVOS Este estudo tem os seguintes objetivos: investigar o entendimento de profissionais que atuam na ESF, no que concerne aos Cuidados Paliativos e suas modalidades terapêuticas; identificar, na visão dos profissionais da ESF, a constituição da equipe de Cuidados Paliativos para a Atenção Básica; verificar as possibilidades e limitações de implementação de Cuidados Paliativos na Atenção Básica, a partir do discurso de profissionais da Saúde. METODOLOGIA Trata-se de uma pesquisa exploratória com abordagem qualitativa. O cenário da investigação constituiu-se de unidades de saúde da família pertencentes ao Distrito Sanitário IV, localizadas no município de João Pessoa (PB). Participaram do trabalho trinta profissionais da ESF, sendo dez médicos, dez enfermeiros e dez cirurgiões-dentistas. Na coleta de dados, utilizou-se um formulário contendo questões pertinentes aos objetivos propostos para a pesquisa. A coleta dos dados ocorreu entre julho e setembro de 2011. ANÁLISE DOS DADOS O material empírico foi analisado mediante a técnica de análise de conteúdo, a partir das seguintes fases: pré-análise; exploração do material; tratamento dos resultados. Os dados obtidos por meio dos depoimentos dos participantes da investigação foram agrupados nas seguintes categorias temáticas: Cuidados Paliativos aspectos conceituais e modalidades terapêuticas (com suas respectivas subcategorias: Cuidados Paliativos promoção de qualidade de vida para pacientes sem possibilidades de cura; modalidades terapêuticas em cuidados paliativos); Cuidados Paliativos na Atenção Básica formação da equipe, possibilidades e limitações. RESULTADOS: Este estudo mostrou, a partir da visão dos profissionais evolvidos no estudo, a valoração dos Cuidados Paliativos considerados como uma modalidade de cuidar que visa à minimização do sofrimento do paciente sem possibilidades terapêuticas de cura e à de seus familiares, mediante uma assistência pautada na humanização. Por outro lado, alguns dos participantes do estudo apresentaram uma compreensão incompatível com a literatura pertinente aos Cuidados Paliativos. Os resultados assinalaram também que os médicos, enfermeiros e cirurgiões-dentistas acreditam na possibilidade de implementação dessa modalidade de cuidar na Atenção Básica, desde que sejam atendidas algumas necessidades, tais como: capacitação da equipe e desenvolvimento de uma política nacional para os cuidados paliativos. CONSIDERAÇÕES FINAIS Consideramos que este estudo abre novos horizontes no campo da investigação científica, na assistência e no ensino acerca dos cuidados paliativos na Atenção Básica. Haja vista o quântico reduzido de estudos direcionados à respectiva temática no âmbito da literatura nacional. Esperamos, portanto, que esta pesquisa possa subsidiar novas investigações que contemplem a inter-relação dos Cuidados Paliativos com a Atenção Básica, visto que se trata de uma prática inovadora no referido campo, necessitando-se de uma maior disseminação junto a gestores, profissionais da Saúde, em particular os da ESF, estudantes e pesquisadores da área.