Background: Living with an incurable disease means facing existential challenges that the person must relate to. Being in a palliative phase also means that the person undergoes a lot of changes which often causes suffering. Suffering in palliative care is seen as multidimensional, something that affects the whole person, which is why a holistic view is a central part of palliative care. Aim: The aim of this literature study was to describe patient's experiences of existential suffering in the palliative phase. Method: A literature study based on ten qualitative articles. Results: Four main themes were found; experiences of a changed life-situation, experiences of loneliness, experiences of meaningless and experiences of loss. Conclusion: The study shows, from an existential point of view that coping and handling with an imminent death is complex and difficult in several ways. Patients in palliative care are a vulnerable patient group whose existential suffering may be enhanced by the way health professionals provide care. The study also shows a need for further research in this area aiming to support health care professionals to alleviate existential suffering.

Bakgrund: Begreppet palliativ vård definieras som ett förhållningssätt där det centrala målet är att förbättra patienters och anhörigas livskvalitet. Behovet av palliativ vård är stort då allt fler blir äldre. Sjuksköterskor kan möta patienter i palliativa skeden inom olika vårdsammanhang och upplever att kunskapen är otillräcklig. Syfte: Syftet var att beskriva patienters upplevelser av att leva med sjukdom i ett palliativt skede, samt att beskriva de valda artiklars undersökningsgrupper.  Metod: Litteraturstudie med en beskrivande design innefattande 13 artiklar med kvalitativ ansats från databaserna CINAHL och MEDLINE via PubMed.  Huvudresultat: Att leva i ett palliativt skede upplevdes av många patienter som en kamp och ett lidande. De önskade att få fortsätta leva ett så normalt liv som möjligt och bibehålla självständigheten. Att inte längre kunna ta hand om sig själv upplevdes skapa ett stort beroende av andra och resulterade i en känsla av att vara en börda för familjen. Det var meningsfullt att spendera tid med familjen samt att få stöd. Vissa patienter upplevde en acceptans av livets slut och önskade att få dö fridfullt.  Slutsatser: De upplevelser som patienterna förmedlade i det palliativa skedet kan tyda på ett stort behov av att erhålla stöd på olika sätt, samt att självständighet och familjen spelar en viktig roll i patienternas livssituation. För att patienterna ska få bevara upplevelsen av att vara självständig och få en så god omvårdnad som möjligt, bör sjuksköterskan kommunicera och stödja patienterna samt sträva efter att de får uppleva delaktighet i den egna vården. / Background: The concept of palliative care is defined as an approach where the key objective is to improve the quality of life for patients and their relatives. The need for palliative care is substantial as more people are getting older. Nurses can meet patients in palliative stages in different health care settings and experience the knowledge as inadequate.  Aim: The aim was to describe patients experience of living with disease in a palliative stage, and to describe the selected articles study groups.  Method: Litterature review with a descriptive design including 13 articles with a qualitative approach, from the databases CINAHL and MEDLINE via PubMed. Main results: To live in a palliative stage was experienced by many patients like a struggle and suffering. They wanted to live their lives as normally as possible and to maintain their independence. To no longer being able to take care of themselves perceived to create a dependence on others and resulted in a feeling of being a burden to the family. It was meaningful to spend time with family and to receive support. Some patients experienced an acceptance of life ending and wished to die peacefully. Conclusions: The experiences that patients mediated in the palliative stage may indicate a great need to be supported in different ways, and that independence and the family plays an important role in patients' lives. To ensure that patients are preserving the experience of being independent and get as good care as possible, the nurse should communicate and support patients and strive to get the experience involvement in their own care.

Background: The End of Life Care Strategy stated that there should be a reduction of expected deaths in the acute setting. In order to achieve this goal, when it has been identified that where the patient's preferred place of care is home, clinicians need to be able to recognise when a patient is dying in order to achieve their preferred place of death. The aims of this study were to identify any factors that help or hinder a clinician when they are determining when irreversible dying begins and to seek consensus on which of these topics would be useful to include in an education programme. Method: A 3 stage mixed methods study was developed. Phase 1was a Systematic Review of current primary research in order to provide an evidence base for the study. Phase 2 involved unstructured interviews with clinicians in the acute setting utilising the Grounded Theory approach to the analysis identify potential factors. Phase 3 was a Delphi study used to identify which of these factors would be useful in an education programme. Conclusions: The Systematic Review identified four themes "Patient Observation", "Knowledge of the Patient", "Communication" and "Attitudes of the Clinician". These were confirmed by the interviews and a further theme "Experience" identified. The over-arching theme emerging from the findings of the interviews was that clinicians have a fear of getting the timing of the recognition of irreversible dying wrong because the decision making process is so complex and this is exacerbated by fear of missing the treatable. Many factors identified in the interviews were acknowledged as factors that could be included in an education package. It was also identified that there is the need for a culture shift in society regarding death and dying and a change in the philosophy of care for health care professionals.

Contexte : L’annonce du passage de soins curatifs à des soins palliatifs précipite la personne sur son dernier chemin, avec l’angoisse qui surgit. Cette annonce amorce un processus de déliaison à l’origine de la souffrance. Au-delà d’une chronique d’une mort annoncée, comment accompagner ceux qui se trouvent à la dernière étape de leur vie afin qu’ils continuent à être sujet de désir, si ce n’est en soutenant leur force créatrice. Objectif: Mettre en place un dispositif hortithérapique standardisé et manuélisé spécifique à l’accompagnement de fin de vie ; et d’évaluer les processus mobilisés et les effets hortithérapiques.Méthode: L’échantillon est composé de 106 sujets dont l’âge moyen est de 81,9 ans (σ = 8,33: extrêmes : de 57 à 97 ans).Principaux résultats: Les principaux résultats révèlent un effet bénéfique de l’hortithérapie ainsi que des différentes techniques sur les états de base, les attitudes et les processus de création.Nous retrouvons un maintien des états de base et l’intention pour l’ensemble des techniques malgré l’évolution de la maladie.Conclusion : A partir des résultats obtenus dans ce travail de recherche, des recommandations pour les bonnes pratiques en fonction des populations rencontrées ont été élaborées. / Background: The announcement of the passage of curative to palliative care precipitates person on his last path with the anxiety that arises. This announcement begins a process of unbinding the origin of suffering. Beyond a chronicle of a death, how to support those who are in the last stage of their lives so they continue to be subject of desire if not supporting their creative force.Objective: Establish a standardized and specific tool to support end of life, and to evaluate the process and effects.Method: The sample consisted of 106 subjects with a mean age of 81.9 years (σ = 8.33 : range, 57 to 97 years).Main results: The main results show a beneficial effect of horticultural therapy as well as different techniques on the basis states, attitudes and creative process.We find a continuation of basic states and intent for all technical despite the evolution of the disease.Conclusion: From the results obtained in this research, recommendations for good practice based on populations encountered were developed.

Arguably life threatening and chronic illness is not just an attack on the body, it is an attack on a person s sense of self-identity, shattering the means by which a person experiences the world, and by which they also are experienced, contributing to a person s sense of powerlessness and distress. People living with a life threatening or chronic illness, often describe the impact of their diagnosis, treatment and illness as having changed their sense of self-identity beyond all recognition. Seven participants, purposefully selected from those attending a weekly day-hospice session in Wiltshire, took part in the study. This qualitative, practice-based research project challenges the power dynamics in art therapy and attempts to equalise the relationship between researcher and participant through the development of a collaborative intersubjective relationship, within which the participants are recognised as experts on their lived experience, and in a series of negotiations , co-design their own portraits directing how they wish to be portrayed. Through this process the participants become patient/researchers (PRs) and the artist/therapist/researcher (ATR), by creating the portraits, also becomes a reflexive participant . This project utilises an in-depth multiple case-study design and multiple creative data generation methods as well as a phenomenological approach to data analysis. This project reverses the terms of engagement within art therapy and uses the art therapist s artistic practice or third hand to create portraits for patients. (This is based upon the assumption that most art therapy theories terms of engagement include patients producing art within the therapeutic encounter, however some psychodynamic and psychoanalytic art therapists may use client art generation selectively or not at all). This raises important questions around who makes the artwork in art therapy interventions . The use of portraiture as a third hand intervention enables the art therapist to develop a sense of positive focussed attention and mirroring and attunement through the art object, enabling the addition of coherence through aesthetic resonance and the holding of dualities through metaphor and symbolism. The results of this study demonstrate the power of portraiture as an intersubjective way of knowing, being and relating, enabling the revisioning of identities disrupted by illness, characterised by increases in participants creative capacity to adapt to illness and feelings of home-like-being-in-the-world, developing a stronger, more coherent lived experience of self-identity, effecting closure to difficult life experiences, and improving their overall quality of life.

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.

Palliativa vårdens ändamål är att öka livskvalitén och stödja både patienten och dennes familj genom ett obotligt sjukdomsförlopp. Palliativa vårdens målgrupp är inte enbart de med en cancerdiagnos utan alla med en obotlig sjukdom. Förförståelsen kring begreppet palliativ är stor och kan innebära en risk för sämre vård för patienten. Studiens syfte har varit att beskriva förförståelsen i palliativ vård utifrån sjuksköterskans perspektiv. Metoden i studien är en litteraturöversikt som utgår från Fribergs litteraturöversiktsmetod (2017, ss. 141–148). En kvantitativ och nio kvalitativa artiklar analyserades. Resultatet av litteraturöversikten lyfter fram tre huvudteman följt av tre underteman. Huvudtemat kunskapsproblem tar upp riskerna när sjuksköterskans påverkas av sin förförståelse i kommunikation, utbildning och strategier. Huvudtemat vårdkonsekvenser belyser hur fördomar och förförståelse utifrån definitioner, möten och hinder i vården kan skapas. Huvudtemat lidande tar upp det lidande som förförståelsen kan leda till utifrån sjuksköterskans självbild, sjuksköterskans/patientens delaktighet och skapandet av patientrelationer. Förförståelse leder till att patientrelationen påverkas och innebär ett ökat lidande för patienten. Sjuksköterskans förförståelse kan skapa vård som inte tillför något till patientens egentliga behov. Den palliativa vården innebär utmaningar för sjuksköterskan. I den palliativa vården har författarna identifierat brister i förförståelsen hos sjuksköterskor i framför allt hur kommunikation och information framförs till patienten. En kontinuerlig vård med självreflektioner utifrån evidensbaserade utbildningar är en grundförutsättning för en mer fördomsfri palliativ vård.

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.