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.

Syfte: Studiens syfte var att ta del av teamets samlade erfarenheter av deras uppfattningar om vilka känslor, existentiella tankar och reaktioner döende patienter kan ge uttryck för, hur team-medlemmarna bemöter dessa samt deras uppfattning om teamets betydelse. Urval: Tio deltagare ur vårdteamet på hospice, nio kvinnor och en man, deltog i studien. Metod: Data samlades in genom semistrukturerade kvalitativa intervjuer. Analysresultat: Analysarbetet resulterade i tre teman. Dessa teman var Döende patienters existentiella tankar och reaktioner, Personalens bemötande samt Teamets betydelse. Resultat: Döende människors tankar och reaktioner kan yttra sig på flera olika sätt. Detta beroende på exempelvis individens personlighet, var i sjukdoms- respektive anpassningsprocessen patienten befinner sig samt möjligheten till stöd från närstående. Informanterna beskrev ett gott bemötande som; att vara närvarande, ge fysisk beröring, prioritera, se individen, vara lyhörd, respektera individen, bekräfta, inge hopp, skapa trygghet samt skapa förtroende. De nämnde även teamets betydelse för patienten, de närstående samt team-medlemmarna själva. Slutsats: Grundläggande för ett gott bemötande är att patienten känner förtroende för personalen. Detta förtroende kan skapas genom att bland annat stanna upp och lyssna på patienten, se och bekräfta denne, ge fysisk beröring samt vara ärlig och uppriktig. Ett gott bemötande kräver också att personalen flyttar fokus från sig själv till patienten och möter individen där denne är. / Aim: The aim of this study was to investigate the team members collected perception of the feelings, existential thoughts and reactions expressed by terminal patients, how the different team members respond to such feelings and their perception of the importance of the team. Sample: Ten members of the healthcare team at the hospice, consisting of nine women and one man, participated in the study. Method: Data was collected during the spring of 2009 through semi-structured qualitative interviews. Analysis Results: The analytical process resulted in three themes. These themes were: Terminal patients’ thoughts and reactions to existential questions, Interaction with the personnel and The importance of the healthcare team. Results: Terminal patients express their thoughts and reactions in different ways. Many factors contribute to the patient’s individual response: his/her personality, how long the patient has been ill, as well as support received from family and friends. The informants described a good response like; to be present, giving physical touch, prioritize, see the individual, listening, respecting individual, acknowledge, inspire hope, creating a haven and creating confidence. They also mentioned the team's importance to the patient, family and friends and the team members themselves. Conclusion: It is fundamental that the patient has confidence in the personnel. According to some of the participants, this confidence is earned by: listening to the patient, respecting and affirming the patient, answering his/her questions, physical contact, and by being honest and frank. Good care requires that the caregiver does not focus on himself but on the patient, meeting each patient as an individual.

Elderly patients experiences of palliative care – a rewire The purpose of this paper was to study elderly patient’s experience of palliative care with present knowledge as starting point. The questions were; what criteria do the elderly, dying person think is most important to fulfill in palliative care? and how satisfied is the elderly, dying person with the palliative care that are giving to him/her? The information were collected by a data based search trough science magazines and technical literature. Four relevant studies were found; Costello (2001), Heyland (2005), Wilson (1999) and Formiga (2004). Results in this studies show that the communication between patients, physicians and nurses need to improve. The elderly patients demands better, straighter and clearer information from the nurses and physicians, especially about their condition. The elderly demands more emotional and spiritual support from the health care and people with chronic diseases like COPD and CHF seems to bee less satisfied with palliative care then those with cancer. The reason for this can bee that, this group of patients is less likely to not being offered palliative care at all, much because it is harder for the physicians to set a proper medical prognosis. Keywords: palliative care, elderly, patient- satisfaction

Denna uppsats behandlar ämnet palliativ vård ur sjuksköterskors perspektiv. Begreppet palliativ vård innebär att fokus läggs på lindrande åtgärder då det inte längre är möjligt att bota patienten. För att skapa en bra vårdrelation, vilket är grunden i fungerande vård, krävs en bra kommunikation. Att kommunicera med en döende patient kan vara svårt för sjuksköterskor då de inte vet vad de skall säga eller hur de skall agera. Känslor hos både sjuksköterskor och patienter kan utgöra hinder i kommunikationen, vilket riskerar att vårdrelationen påverkas negativt. Syftet var att belysa sjuksköterskors upplevelser av kommunikationen med patienter i palliativ vård. Metoden som användes var systematisk litteraturstudie där vetenskapliga artiklar analyserades. Resultatet sammanställdes i sex stycken teman: att inte veta vad man skall säga, tyst kommunikation, känslor som hinder, kunskap, anhörigas påverkan på kommunikationen samt andliga samtal. Sjuksköterskor ser kommunikationen med döende som något viktigt, samtidigt som de är rädda för mötet med döden.

Palliativ vård benämns ofta som vård vid livets slutskede och förekommer i hemmet, på hospice, palliativa enheter eller sjukhus. År 2003 avled ca 35 000 personer av 80 000 avlidna på sjukhus i Sverige. Palliativ vård är en komplex omvårdnadssituation då sjuksköterskor behöver bemöta såväl patientens som de närståendes behov. Närstående har behov av ett individuellt anpassat stöd och önskar mer information och delaktighet i vården. Kommunikationen kan för sjuksköterskorna upplevas som svårt och stressande. Syftet med studien är att beskriva sjuksköterskors upplevelser av kommunikation med närstående vid palliativ vård på somatiska vårdavdelningar. En kvalitativ metod har använts och åtta sjuksköterskor på tre olika medicinavdelningar har intervjuats. I resultatet framkom fyra huvudteman i sjuksköterskornas upplevelser av kommunikationen, att vilja skapa relationer, att vara ärlig, att kunna ge stöd och att bli berörd, dessa relaterades till nio teman. Konklusionen visade att sjuksköterskorna tycker det är viktigt att visa värdighet i hennes sätt att kommunicera till närstående. Kommunikationen mellan sjuksköterskor och läkare behöver förbättras för att kommunikationen inte ska begränsas till närstående. / Palliative care is a total care at a time when the disease is no longer responsive to curative treatment. Palliative care is available at home, at hospice, palliative units or in hospitals. In year 2003 almost 35 000 people of 80 000 people died at Swedish hospitals. In the palliative care nurses are caring for both patients and relatives. Relatives need individual support and want more information and involvement in the care. Nurse’s experiences of communications can sometimes be difficult and stressful. The aim of the study was to describe nurse’s experiences of communication with relatives in palliative care on somatic wards. A qualitative method was used, and eight nurses at three different medical wards have been interviewed. Four themes were found in the result of the nurse’s experiences of communication, to create relations, to be honest, to give support and to become touched. The conclusion showed that the nurses are concerned to show dignity in the communication to relatives. Communication between nurses and doctors needs to be improved because the nurses shouldn’t be limited in the communication to the relatives.

The purpose of this study was to investigate registered nurses experiences about giving support to relatives to patients within palliative home care. This study was descriptive with qualitative approach. The data collection was made in the form of semi structured qualitative interviews which took place in a Swedish city of medium size, in an area for palliative homecare. Six registrated nurses were interviewed which all gave informed consent. The study suffered no losses and permission from the director of the concerned department had been given prior to the start of this study. The interviews were transcribed and analyzed whereupon three themes followed by seven categories entered. In the main results difficulties appeared, such as when the family of a patient was unwilling to realize the situation. However the results also showed opportunities, for example the importance of the support which the nurses constituted. Many informants witnessed about the individual needs that existed among the relatives.  Foremost emphasize was on the importance of relatives and how the contact with them took place. Finally the study shows a picture of the supporting aspects that exists, for example to be able to sense the relatives needs and se their unspoken demands. / Syftet med studien var att undersöka sjuksköterskors upplevelser av att ge stöd till anhöriga till patienter inom palliativ hemsjukvård. Studien var deskriptiv med kvalitativ ansats. Datainsamling skedde i form av semistrukturerade intervjuer utifrån ett intervjuschema, intervjuerna spelades in på band. Detta ägde rum i en medelstor svensk stad i en verksamhet för palliativ hemsjukvård. Sex legitimerade sjuksköterskor intervjuades, varav samtliga lämnade informerat samtycke. Studien erfor inget bortfall och tillstånd från berörd verksamhetschef hade erhållits innan studiens start. Intervjuerna transkriberades och analyserades vartefter tre teman med sju kategorier kom fram. I huvudresultatet framkom svårigheter som när anhöriga har en ovilja att inse situationen. Även möjligheter, till exempel betydelsen av det stöd som sjuksköterskorna utgjorde för de anhöriga belystes.   Många informanter vittnade om individuella behov bland de anhöriga. Framförallt betonades vikten av anhöriga och hur kontakten med dem skede. Slutligen gavs en bild av vilka stödjande aspekter som fanns till exempel sjuksköterskornas förmåga att kunna känna av de anhöriga och se deras osagda behov.

This thesis focuses on palliative cancer care in acute care hospitals and home care settings. The overall aim was to generate a grounded theory explaining the latent patterns of behavior of patients, relatives and nurses. The thesis includes one population-based study with cross-sectional design and four classic grounded theory studies. Study I was conducted in two acute care hospitals. In this 5-year follow-up study, the proportion of hospitalized palliative cancer patients had decreased. The patients were older with more symptoms and care needs per patient. In both years, the most common symptoms were pain and deterioration and the most common cancer sites were prostate and colorectal. The results showed that associations between symptoms, care needs and cancer site were mostly weak. In study II, striving for emotional survival emerged as the pattern of behavior through which nurses in acute care hospitals deal with their main concern, the risk of being emotionally overloaded. Striving for emotional survival involves emotional shielding, emotional processing and emotional postponing. In study III, doing good care emerged as the pattern of behavior through which nurses in home care deal with their main concern, their desire to give good care. Doing good care involves three different caring behaviors: anticipatory caring, momentary caring and stagnated caring.     In study IV, living on hold emerged as the pattern of behavior through which patients and relatives deal with their main concern, being put on hold. Living on hold involves three modes: fighting, adjusting and surrendering. The overall theory, deciphering unwritten rules, explains how patients, relatives and nurses are dealing with the uncertainty of how to act and behave.   Deciphering unwritten rules involves figuring out, deliberating, maneuvering and evaluating. In conclusion, this thesis demonstrates the complexities of palliative cancer care and the importance of knowledge, resources and counseling. Patients should be cared for at the right care level according to their care needs and the care focus should be on treating symptoms irrespective of the diagnosis. The palliative care approach therefore needs to be implemented in all caring contexts with dying people.

Delirium is a disturbance of consciousness and cognition that affects many terminally ill patients before death. It can manifest as confusion, hallucinations, and restlessness, all of which are known to be distressing to patients, families, and professional caregivers. Underlying the contemporary palliative care movement is a belief in the idea that a good death is possible; that dying can be made better for patients and families through the proper palliation of distressing symptoms and through proper attention to psychological, social, and spiritual issues that affect wellbeing at the end of life. Given that delirium is potentially disruptive to all that the good death assumes, i.e., mental awareness, patient-family communication, peace and comfort, the question was asked: What is the relationship between end-of-life delirium and the good death in hospice care? Ethnographic fieldwork was conducted at a freestanding residential hospice over a period of 15 months in a suburban community in eastern Canada. The research methods included participant observation (320 hours over 80 field visits), interviews with 28 hospice caregivers, and document analysis. The findings of this study provide an in-depth examination of the nature of caregiving relationships with patients and with families in end-of-life care. They illustrate how a commitment toward providing for the good death prevails within the cultural community of hospice, and how the conceptualization, assessment, and management of end-of-life delirium are organized within such a commitment. In this setting, experiences of conscious and cognitive change in dying are woven by hospice caregivers into a coherent system of meaning that is accommodated into prevailing scripts of what it means to die well. At the same time, delirium itself provides a facilitative context whereby processes of supporting families through the patient’s death are enabled. This study highlights the relevance of considering the contextual and cultural features of individual end-of-life care settings that wish to examine, and perhaps improve, the ways in which care of delirious patients and their families is provided.

Objectives: The objective of this thesis is to identify and understand communication and information exchange events and their influencing factors that are precursors to medical errors. Methods: Palliative Sedation Therapy is used as a case study to understand how communication and information sharing occur on an in-patient palliative care unit. Data sources were non-participant observation and interviews. Directed content analysis was used to analyze the data, with previously published conceptual models of communication acting as the guides for this analysis. Results/Discussion: Results identified several communication issues that have the potential to act as precursors to medical error at different points in the communication act. A model identifying the points where these precursors can impact communication was created. Conclusion: These results can be used to identify how improvements to communication and information exchange can increase the effectiveness of communication and reduce the likelihood of medical errors occurring.

Syfte: Syftet med denna studie var att utvärdera om de palliativa ombud som utbildats av Palliativt Kompetenscentrum mellan hösten 2008 och våren 2012 anser att de kan arbeta med palliativa frågor på sin arbetsplats. Metod: En icke experimentell empirisk tvärsnittsstudie med mixad metod i form av en enkätundersökning riktad till samtliga som gått utbildningen till palliativt ombud och som lämnat sin e-postadress vid kursregistreringen. Resultat: Både medarbetare och överordnade ger ett bra stöd i arbetet med palliativa frågor och i ambitionen att arbeta enligt ett palliativt förhållningssätt. Stödet upplevs starkare från medarbetare än från överordnade. Det palliativa förhållningssättet fungerar bra bland personalen på arbetsplatsen. Tidsbrist, att palliativa frågor inte prioriteras och ett ointresse från överordnade upplevs som de största hindren i arbetet som palliativt ombud. Medarbetarna är intresserade av att arbeta enligt ett palliativt förhållningssätt, men mer tid behövs för utbildning. Grundutbildningen till palliativt ombud ger ett gott stöd i arbetet med palliativa frågor. Slutsats: Grundutbildningen till palliativa ombud ger ett gott stöd i arbetet med palliativa frågor. Tidsbrist är det främsta hindret i arbetet med palliativa frågor och mer utrymme att utveckla vården och utbilda personal efterfrågas. Den palliativa vården bör få högre prioritet. / Objective: The aim of this study was to evaluate if the palliative agents trained by Palliativt Kompetenscentrum between autumn 2008 and spring 2012 believe that they can work with palliative care issues in their workplace. Methods: A non-experimental empirical cross-sectional study with a mixed method in the form of a survey directed to all palliative agents who left their email address at course registration. Results: Both the employee and the supervisor gives good support in palliative care issues and in the ambition to work according to a palliative approach. Stronger support is experienced from employees than from superiors. The palliative approach works well among staff in the workplace. Lack of time, low priority of palliative care issues and disinterest from superiors is perceived as the main obstacles. Employees are interested in working according to a palliative approach, but more time is needed for training. Basic training for palliative agents provides good support in palliative care issues. Conclusion: Basic Training for palliative agent gives a good support in the work with palliative care issues. Lack of time is the main obstacle and more time to develop the care and training of staff is required. Palliative care should be given higher priority.