The overall aim of this thesis is to illuminate and describe bodily changes and problems in incurable cancer, with focus on prostate cancer, from the patient’s perspective. The thesis consists of four papers, each of which illuminates various aspects of the phenomenon studied. The study population consisted of 24 participants, three women with different cancer diagnoses in the palliative phase, and 21 men with hormone refractory prostate cancer (HRPC) and skeletal metastases. Data are based on interviews (papers I–IV) and a quality of life questionnaire (paper I). The study design is cross-sectional (papers I–III) and longitudinal (paper IV). Qualitative description, descriptive statistics, phenomenological hermeneutics, and analysis of discourse were used to analyze data. The findings of study I show that the dominating symptoms for the men with HRPC (n=20) were pain and fatigue, and three different variants of each problem were described. The men said that changes in their sex life were not an extensive problem, even if it was scored as such. The symptoms differed in occurrence, extent, and meaning between the men, and were not necessarily experienced as problems. In study II, pain and fatigue were again the most prominent problems in men with HRPC (n=18), but pain and fatigue were seen to have different meanings. Pain was seen as synonymous with cancer. Pain can be alleviated, but it is a threat, both now and in the future, and symbolizes a painful death. Fatigue was viewed as a hindrance in the present. It was experienced as less threatening than pain, but as something that cannot really be changed. Fatigue represents the natural course death will take, as eventually sleep into death. An important finding of study II is that one meaning of bodily problems is to live in a cyclical movement of losing and reclaiming wellness. Understanding, and, to some extent, being in control of, bodily problems makes it possible to experience wellness. When the bodily problems increase or change, or when new problems appear or become a hindrance in the daily life, the experience of being ill returns. The findings of study III show that one meaning of fatigue in patients with cancer in the palliative phase (n=4) is a lived bodily experience of approaching death. This can be understood through the paradox of struggling against fatigue, and hoping to overcome it, yet expecting failure. The body, through fatigue, signals to the person that death is approaching, but the person is not yet “ready”. Paper IV shows that the way two of the men with HRPC talked about the past, present, and future changed during the disease trajectory. In the first interview, the men were open towards both the past and the future, while just before death, their narration was totally dominated by the concrete experience of the illness. The past became the past in the illness and not in life, and the present was flooded with extensive bodily changes. Also, the future had shrunk, although it also had been transferred to beyond death. Pain, fatigue, nausea, and other bodily problems figured largely in this change. This thesis provides important insights into the phenomenon of bodily changes when living with incurable cancer, with focus on prostate cancer. The thesis shows the connection between bodily changes and time, where different bodily changes have different meanings, and meanings seem to change during the illness trajectory (papers I–IV); and bodily changes close to death seem to take “all” time; what is left is the present filled with problems (paper IV). Further, it shows that bodily changes have a great influence on the cyclical movement between losing and reclaiming wellness in incurable cancer (paper II). The clinical implications of the thesis are that alleviation of pain and other bodily problems must be based on the meaning the patient gives the bodily changes taking place. That is, alleviation with the purpose to free time and to facilitate living in wellness as death is approaching.

The overall aim of the thesis was to describe caregivers’ experiences of caring for women with breast cancer on a surgical ward. The study was based on interviews with narrative parts and tape-recorded clinical supervision sessions. The interviews and clinical supervision sessions were transcribed verbatim, and analysed by content analysis. Nurses (n=10) described life for women with breast cancer as either having freedom or not having freedom, with both physical and existential suffering. Dying occurred either naturally in patients’ own home or unnaturally in hospital. The nurses felt that it is possible to alleviate suffering during dying through providing adequate pain relief but also, through listening, providing information and changing the caring atmosphere (I). Breast cancer as an illness was described from a dark point of view by caregivers (n=37). The descriptions focused on loss of breasts and control, progression of the illness and annihilation. The illness seemed, in the caregivers’ mind, to often end with a painful death. Caregivers who had the opportunity to follow the total care process described a lighter viewpoint (II). According to nurses (=31) the most important needs among women, their relatives and nurses themselves were the needs to talk and receive information. There was a discrepancy between what was described as important needs and the descriptions of how these needs were provided for. Nurses, whose own needs for support were sometimes unsatisfactorily met (III), seemed almost to be unaware of the needs among women and their relatives. In the clinical supervision sessions caregivers reflected on difficult care situations related to women’s, relatives’, and most often caregivers’ feelings (n=38). The care situations were described as evoking feelings of discomfort, powerlessness and reduced self-esteem. These feelings were described by caregivers as arising in connection with caring for especially women with advanced breast cancer in a changing organisation (IV). Caregivers’ descriptions of caring for women with breast cancer show a lot of negative experiences of powerlessness and frustration. They met women and their relatives who suffered in various ways and had considerable need for support. Caregivers often found themselves unable to meet these needs due to organisational obstacles e.g. lack of time and lack of knowledge about other caregivers’ responsibility in the care.

In studies on Near Death Experiences (NDE) data has been collected by using the recently developed scaling methods, the scale developed by Ring and the Greyson NDE Scale. In order to illustrate the problems in the empirical study of NDEs, my intention is to compare the Greyson NDE-scale with the most common theories on NDEs.  After series of modifications the final scale consisted of a questionnaire consisting of sixteen different questions, that yielded into four different areas, Cognitive components, Emotional components, Paranormal components, and Transcendental components. In the end the theory that has the most likely possibility to explain NDEs in the future must be the Dying Brain theory, but one should not disclose the different features of the Afterlife theory (but without the origin explanation).

Bakgrund: Allt mer av den palliativa vården bedrivs i hemmiljö. Sjuksköterskor träffar ofta närstående som vårdar svårt sjuka och döende personer i hemmet. Vården idag tar inte vara på de närståendes möjligheter och kunskaper. Vårdpersonalen fokuserar på den sjuke och glömmer bort de närståendes behov. Syfte: Var att belysa närståendes erfarenheter av att leva nära en svårt sjuk och döende person i hemmiljö Metod: Metoden som användes var en självbiografistudie, där materialet analyserades med en narrativ metod. Resultat: Ur datamaterialet framträdde tre kategorier såsom livet förändras, utsatthet och mod att våga leva här och nu med 10 underkategorier. Konklusion: För att vården av svårt sjuka och döende personer i hemmet ska fungera behöver sjukvården bli mer uppmärksam på de närståendes behov och hur deras resurser kan tas tillvara. / Introduction: Today it´s more common that next of kin´s take care of seriously ill an dying family members in their home. Nurses often encounter these relatives, and feel that healthcare doesn’t care enough about the next of kin’s possibilities and knowledge. The caregivers often focus on the ill person and forget the needs of the next of kin. Aim: The aim of this study was to highlight next of kin´s experiences of living close to a seriously ill and dying person in their domestic environment. Method: The used method was a study of autobiographies. The analysis was performed with a narrative method. Result: From the analysis five categories emerged life changes, vulnerability and courage to live here and now with ten subcategories. Conclusion: Palliative care in the home requires that caregivers are more aware of the next of kin’s needs and how to make use of their resources.

Döende patienter som vårdas på sjukhus har ibland minderåriga barn. Dessa barn är i stort behov av stöd vilket sjuksköterskan har som uppgift att tillgodose. I nuläget brister detta då många sjuksköterskor saknar kunskaper inom området. För att stödja barn till en döende förälder på ett optimalt sätt krävs kunskap om barns förståelse av döden, reaktioner på förlust av en förälder samt hur sjuksköterskan kan kommunicera med barn och föräldrar. En litteraturstudie har genomförts i syfte att belysa sjuksköterskans stöd till barn som anhöriga när en förälder är döende. Resultatet är uppdelat i fyra olika teman: Information och kommunikation, Anpassa miljö och omgivningsfaktorer, Stöd till föräldrar samt Främja relationen och avskedet mellan barn och förälder. Sjuksköterskan kan genom att ge adekvat information främja barnets delaktighet i vården. Miljön på sjukhus kan anpassas så att den blir mindre skrämmande för barnen. Sjuksköterskan kan också stödja barnen indirekt genom att ge stöd till föräldrarna. För att möjliggöra ett positivt avsked bör sjuksköterskan främja relationen mellan barn och döende förälder. Om sjuksköterskan ska ha möjlighet att tillgodose barnens behov av stöd krävs utbildning i ämnet. Ytterligare forskning gällande barns upplevelser och behov när en förälder är döende är betydelsefullt för att öka förståelsen för dessa barn. / Dying patients being cared for in a hospital may have minor children. These children are in dire need of support which the nurse has the duty to accommodate. At present many nurses lack knowledge in this area. Knowledge of children’s understanding of death, their reactions to the loss of a parent and communication with children and parents is needed to optimally support children of dying parents. A literature review was conducted to illustrate the nurses’ support for children of dying parents. The result is divided in four different themes: Information and communication, Adapt environment and surrounding factors, Support to parents and Enabling the relationship and farewell between child and parent. By giving adequate information the nurse can promote the child’s participation in the parent’s care. The environment can be adapted to make it less scary for children. The nurse can also help the children indirectly by providing support to the parents. In order to allow a positive farewell the nurse should facilitate the relationship between children and dying parents. To be able to do this, the nurse requires education in the subject. Further research is also needed to increase the understanding of these children’s needs.

Abstract This bachelor’s essay focuses on the depictions of life and death in the novel Ways of Dying by Zakes Mda. It claims that the novel is mainly focusing on a concept of life although it is set in a time in South Africa which is filled with death. The theory being used in the essay is mainly the postcolonial theory by Elleke Boehmer regarding terror since her definitions of terror corresponds very well to what is written in the novel. To add to this postcolonial theorist the essay has a feature of the structuralist binaries to enhance the focus upon the dichotomies of Life and Death. The essay discusses the situation of violence in transitional South Africa as described by the novel and focuses mainly on violence and politics to investigate the depictions of death. The representations of life in the novel are mainly shown through the magical realism, the story telling and the funerals which are visited by the main character Toloki. The essay explains that the novel is mainly focused on the binary opposite of life because of among other things the ending and the depictions of the funerals.

Bakgrund: Palliativ vård bygger på ett förhållningssätt där målet är att förebygga och lindra lidande samt förbättra livskvalité hos patienter och närstående. Vården tillhandahålls utifrån ett helhetsperspektiv vilket innefattar andliga och existentiella frågor. Dessa frågor kan vara komplexa att hantera för sjuksköterskan. Arbetet kan därför kännas slitsamt och påfrestande men samtidigt vara berikande och utvecklande. Förmåga att bemästra svåra situationer underlättas av att sjuksköterskan har goda kunskaper om existentialfilosofi och livsfrågor samt får stöd i yrkesrollen. Hur sjuksköterskan själv ser på sjukdom, lidande och död påverkar i sin tur mötet med patienterna. Syfte: Att beskriva sjuksköterskors erfarenheter av att möta döende patienter med existentiella och andliga behov inom palliativ vård Metod: Litteraturbaserad studie med grund i kvalitativ forskning utifrån 12 vetenskapliga artiklar. Resultat: Tre kategorier med tillhörande underkategorier utgör resultatet: Bygga en tillitsfull relation; Främja personlig växt; Hantera känslomässigt påfrestande situationer. Slutsats: Det krävs en tillitsfull relation för att sjuksköterskor ska kunna identifiera patienters andliga och existentiella behov. Sjuksköterskor utvecklar personlig växt utifrån relationer med patienter men upplever samtidigt att de ställs inför känslomässigt påfrestande situationer, vilket kräver stöd och handledning i yrkesrollen samt en balans i tillvaron. / Background: Palliative care is based on an approach where the purpose is to prevent and palliate suffering and improve quality of life for patients and their relatives. The care is based on holism, which means that both spiritual and existential aspects are included. This can be very complex to handle for the nurse. Therefore, nurses can experience their work situation as strenuous and trying at the same time as enriching and developing. An ability to handle difficult situations is, together with professional support, facilitated by the fact that nurses have sound knowledge of existential philosophy and existential questions. Significant when meeting the patients is the nurse’s own experience concerning illness, suffering and death. This relation influences the contact with patients. Aim: To describe nurses’ experience of meeting dying patients with existential and spiritual needs in palliative care. Method: Literature-based study on qualitative research from 12 scientific articles. Result: Three main categories with subcategories emerged; Developing a trusting relationship; Promote personal development; Dealing with emotionally stressful situations. Conclusion: A relation based on trust is required if nurses shall be able to identify a patient’s spiritual and existential needs. Nurses gradually increase personal development from relations with patients but simultaneously experience that they are confronted with emotionally stressful situations which require support and professional guidance together with a balanced life.

Syftet med denna litteraturstudie var att beskriva hur sjuksköterskor kan samtala om döden och döendet med barn som har livshotande sjukdomar. Litteratursökningen genomfördes i databaserna Medline (via PubMed) och Cinahl samt via manuell sökning. Tio artiklar som mötte inklusionskriterierna granskades. Resultatet bearbetades och presenterades utifrån de nio grundelementen i professionell, omvårdnadsorienterad kommunikation. Resultatet visade att en förutsättning för att sjuksköterskor ska kunna samtala om döden och döendet med barn är att de visar empati, har yrkeskunskap samt ett mål för samtalet. Relationen mellan sjuksköterskor och barnet måste bygga på känslor, förnuftigt tänkande samt en etiskt reflekterande vård. Sjuksköterskor måste se på nuet samtidigt som de har barnets förflutna i åtanke och föreställer sig hur barnets framtid kan gestalta sig. Genom att använda teckningar som kommunikationshjälpmedel kan sjuksköterskor åskådliggöra barnets känslor, tankar, drömmar och frågor samt förstå barnets livsupplevelser. Slutsatsen är att det finns stöd för att samtalet om döden och döendet med barn som har livshotande sjukdomar kan bygga på de nio grundelementen i professionell, omvårdnadsorienterad kommunikation. / The aim of the present literature review was to describe how nurses can talk about death and dying with children who have life-threatening diseases. A literature search was conducted in the databases Medline (through PubMed) and Cinahl, and through manual search. Ten articles that met the inclusion criteria were reviewed. The results were processed and presented on the basis of the nine basic elements of professional, caring-oriented communications. The result showed that a condition for nurses to be able to talk about death and dying with children is that they show empathy, have professional knowledge and a target for the conversation. The relationship between nurses and the child must be based on emotions, rational thinking and an ethically reflective care. Nurses must look at the present moment, while they have the child's past in mind and imagine how the child's future can turn out. To use drawings as a communication tool can help nurses to visualize the child's feelings, thoughts, dreams and questions, as well as understand the child's life experiences. The conclusion is that there is evidence for that conversation about death and dying with children who have life-threatening diseases could be based on the nine basic elements of professional, caring-oriented communications.

Det är svårt att bedöma hur lång tid en människa har kvar i livet och brytpunkten för när en patients döende fas inleds kan vara otydlig (Ellershaw & Ward, 2003). Det är viktigt att den sista tiden blir så bra som möjligt och här spelar sjuksköterskan en viktig roll. Syftet med studien var att belysa sjuksköterskors upplevelser av att vårda döende patienter på en akutvårdsavdelning. Metoden som användes var kvalitativa fokusgruppintervjuer och data analyserades med induktiv innehållsanalys. Ett övergripande tema för studien kan benämnas vårdens vågskålar, dilemman och tillfredställelse, vilket speglar den dubbelbottnade natur vården har. Intervjuerna resulterade i tio koder, vilka delades in i tre kategorier. Under kategorin känsla av att räcka till fanns koderna behov av tid, etiska ställningstaganden, anhörigkontakt samt det goda döendet. Den andra kategorin var strukturer i vården och innehöll koderna organisationen, vårdplanens betydelse samt förbättringsmöjligheter. Den sista kategorin personliga dilemman innehöll koderna påverkan på sjuksköterskans person, våga tala om döden samt uppföljning. Det sjuksköterskorna framhöll behov av tid för att kunna ge en optimal vård. De beskrev ett glapp mellan vad de upplevde som god vård vid livets slut och de resurser de hade för att förverkliga detta. Resultatet styrks av tidigare forskning.

<p> </p><p>In studies on Near Death Experiences (NDE) data has been collected by using the recently developed scaling methods, the scale developed by Ring and the Greyson NDE Scale. In order to illustrate the problems in the empirical study of NDEs, my intention is to compare the Greyson NDE-scale with the most common theories on NDEs.  After series of modifications the final scale consisted of a questionnaire consisting of sixteen different questions, that yielded into four different areas, <em>Cognitive components, Emotional components, Paranormal components, </em>and<em> Transcendental components</em>.</p><p>In the end the theory that has the most likely possibility to explain NDEs in the future must be the Dying Brain theory, but one should not disclose the different features of the Afterlife theory (but without the origin explanation).</p><p> </p>