In the last fifty years, hospice palliative care has changed the modern understanding of dying. Rather than focusing on death, it promotes the facilitation of optimizing life for patients whose conditions have worsened beyong the possibility of recovery or cure. As such, this thesis is a response to the demands of architecture to support this unique stage of life. It analyzes and posits guidelines for designing spaces which must cater to the specific and vastly different needs of the palliative care specialists, family members, and the patients themselves. Also, it seeks to examine the nuanced complexities and poetics involved in a proposed architectural design for a hospice in downtown Toronto. The typology for a hospice is one that is both complex and evolving. It must combine the domestic scale of a home with the efficiency and standardization of an institution. The contemporary hospice must also accommodate rituals and beliefs surrounding the end of life that vary greatly from the many cultures that make up the contemporary city. At the very least, the building must provide inspiration and a hope for a peaceful and dignified transition, recognizing also that this is no longer a traditional place for cure. The distinctions suggest a reconsideration of what is needed and what is expected for those involved in and affected by the dying process. This thesis will explore the architectural possibilities inherent in a new social understanding of the end of life that defies the fatalistic view of an inevitable death, in favour of a hope for dying with dignity while embracing an opportunity to experience liminality during our final days.

The purpose of this naturalistic inquiry was to describe, interpret, and link through voices of parents the lived experience of caring for a child with a lifelimiting and lifethreatening diagnosis within the context of existing social polices. Critical ethnology and Habermas critical theory framework together provided a broad framework from which to delve beneath the surface of everyday appearances and to produce theoretically informed accounts of social phenomena grounded in parents perceptions of caring for children who have palliative care needs. This framework provided the means to deconstruct power structures and relationships to reveal and redress oppression by unlocking silent discourses, emancipating voices, and empowering families. The stories of six parents were captured and presented a critical discourse concerning outcomes of the operationalized welfare state within a liberal paradigm that celebrates the autonomous individual as the appropriate unit of political analysis. <p>Four themes emerged that illuminated and provided a fuller understanding of the lived experiences of parenting a child with a lifelimiting and lifethreatening diagnosis. The initial theme, Mother as Caregiver, described the profound effect that assuming the caregiving role had on the lives of these mothers. The theme, Respite and Coping, explored and identified the overwhelming need for parents to obtain relief through respite, so they could parent better. The third theme, Surviving Past Expectancy, explained how their child, outliving their initial diagnosis, placed yet another new stress and burden on the family. The final theme, Getting Everyone on the Same Page, described frustrations parents experienced on a regular basis trying to find services and then act as coordinator for their child and family.<p>This study provided a unique and valuable optic to an untapped data source, which until now has remained silent. Results demonstrate the significance and meaning of the identified themes and their interrelatedness, and the study concludes with a discussion of the findings and policy implications. The main findings were the untapped resilience and strength of each participant, the uniqueness of each of their stories, and the reality that the harms associated with having a child with a lifelimiting and lifethreatening diagnosis can certainly be lessened through social polices that direct the provision and access to pediatric palliative care services to all who require them. A researchedbased understanding of the lived experience and the contextual nature of parents perceptions provides policymakers, politicians, and health care professionals an opportunity to offer specialized services and programs to children with lifelimiting and lifethreatening diagnosis and their families.

Bakgrund:Varje år drabbas cirka 50 000 personer i Sverigeav cancer. Att vårda människor som drabbats av en obotlig cancersjukdom innebäratt vårda lindrande. Palliativ vård innebär medicinsk behandling och omvårdnadsom är inriktad på symtomlindring och välbefinnande för patienten och dessnärstående. Syfte: Syftet var attbelysa vad som kan främja välbefinnande hos en patient med cancersjukdom i ettpalliativt skede, ur ett patientperspektiv. Metod: En litteraturstudie som inkluderade 18 artiklar, varav 15kvalitativa (därav en fallstudie), samt tre kvantitativa artiklar. Resultat: Delaktighet i beslut ochomvårdnad var av betydelse, samt vikten av att ha sin religiösa tro som hjälptetill att upprätthålla ett hopp i livet. För att uppnå ett välbefinnande vargoda relationer mellan personal och patient betydelsefulla. Även att patientenkände sig sedd och att personalen var engagerad i patienten kunde påverkavälbefinnandet. Då det inte fanns så mycket tid kvar i livet var det avbetydelse att kunna få bo på den plats patienten själv önskade och attsamtidigt känna sig fri från fysisk och psykisk smärta. Resultatdiskussion: Betydelsen av delaktighet och kommunikation varolika för olika patienter. Genom att respektera patientens önskan omdelaktighet kunde patienten uppleva autonomi. Fanns en kommunikation mellansjuksköterska och patient kunde omvårdnadsbehov lättare identifieras. Slutsats: Delar av resultatet somframkommit är faktorer som kunde åtgärdas i vardagen med relativt små medel,men som kunde bli betydelsefullt för patienten. Resultatet kan finnas i åtankenär vårdpersonal behandlar patienter med olika sorters diagnoser. / Background: Every year approximately 50 000 people in Sweden suffers by a cancer diagnosis. Caring for people suffering from incurable cancer means palliative care. Palliative care is a medical treatment and nursing focusing on relieve of symptoms, as well as the well-being of patients and relatives. Purpose: The purpose of this study was to illustrate factors that can promote the well-being of a patient living with cancer, in a palliative phase. The perspective in this study is from a patient’s point of view. Methods: A literature review that containing 18 articles. 14 were qualitative, one was a case study and three were quantitative articles. Results: Involvement in decisions and care was of importance, as well as having their religious beliefs that helped them to maintain hope in life. To achieve well-being, good relationships between staff and patient were important. Because it was little time left in life, it was important to be able to live in a place that the patient felt comfortable, as well as feeling free from physical and mental pain. Discussion: The significance of participation and communication were different for all patients. By respecting a patient's desire for participation, the experience of autonomy could be fulfilled. The communication between nurse and patient was of importance to identify care needs. Conclusion: Part of the result showed that things could be addressed in daily life with relatively small funds, but were of big importance for the patient. The result can be a reminder when health professional treats patients with different types of diagnosis.

No description available.

BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death. OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death. METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals. RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death. CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.

No description available.

Bakgrund: Trycksår är en lokal skada av huden. Skadan ligger ovanför ett benutskott och orsakas av tryck eller en kombination av tryck skjuvning eller friktion. Smärta från trycksåret är ett vanligt förekommande problem som påverkar livskvaliteten negativt. Syfte: Syftet med studien var att undersöka förekomsten av trycksår i livets slutskede samt att se om personer med smärta och trycksår är smärtskattade med VAS/NRS. Syftet var även att se om det fanns något samband mellan trycksår och smärta. Metod: Metoden som använts var en retrospektiv deskriptiv undersökning med kvantitativ ansats. Insamling av data skedde via frågor tagna ur dödsfallsenkäten. Uppgifterna togs ur Svenska palliativregistret samt via journalgranskning. Resultat: Förekomsten av trycksår under 2008-2010 var mellan 29 - 33 %. Under perioden dog 95 (30 %) personer med trycksår, 83 % av dessa trycksår var kategori 1 eller 2 sår. Av de som avled med trycksår upplevde 78 % smärta sista veckan i livet, 59 % hade smärtskattats med VAS/NRS där det visade sig att 69 % skattade över 3 på VAS/NRS skalan. Medianen på VAS/NRS var 6. Inget signifikant samband mellan trycksår och smärta påvisades. Slutsats: Personal som vårdar personer i livets slutskede bör ha en god kunskap om hur, var­för och när trycksår uppkommer mot slutet av livet och även ha ökad kunskap om kroppens smärtmekanismer samt vilken symtomlindring som fungerar. Nyckelord: god död, palliativvård, cancer, Svenska palliativregistret. / Background: Pressure ulcers are a local damage of the skin. The damage is above a bony prominence caused by pressure or a combination of pressure shear and friction. Pain from the pressure ulcer is a common problem that affects quality of life negatively. Aim: The aim of this study was to investigate the incidence of pressure ulcers in palliative care and to see if people with pain and pressure ulcers are pain assessed by VAS/NRS. The aim was also to see if there was any correlation between pressure ulcers and pain. Method: The method used was a retrospective descriptive study with quantitative approach. Data collection was done through questions taken from the Swedish death inquiry. The data were taken from the Swedish palliative register and through journal review. Results: The incidence of pressure ulcers during 2008-2010 was between 29 – 33 %. During the period died 95 (30%) with pressure ulcers, 83% of these pressure ulcers were category 1 or 2 wounds. Of those who died with pressure ulcers 78 % experienced pain last week of life, 59 % had pain assessed by VAS/NRS that showed that 69% estimated above 3 on the VAS/NRS scale. The median on VAS/NRS was 6. No significant correlation between pressure ulcers and pain were found. Conclusion: Staff who care for people in end of life care should have a good knowledge of how, why and when pressure ulcers occur towards the end of life, they should also have greater knowledge of the body's pain mechanisms and pain relief that works. Keywords: Good death, palliative care, cancer, Swedish palliative register.

Sammanfattning Inledning: Allt mer av distriktssköterskans omvårdnadsarbete går mot att vårda människor i livets slut. Döendet för med sig existentiella tankar som kan orsaka ångest hos patienter och deras närstående. Bakgrund: Palliativ vård förebygger och lindrar lidande genom tidig upptäckt, noggrann analys och behandling av smärta och andra fysiska, psykosociala och existentiella problem. Den innefattar även stöd till närstående under och efter vårdtiden. Syftet med studien var att undersöka hur distriktssköterskor upplever ångest i livets slutskede, hos döende patienter, deras närstående och sig själva, med fokus på orsaker Metod: Studien har en kvalitativ design där fyra fokusgruppsintervjuer har genomförts med sammanlagt 20 distriktssköterskor. Kvalitativ innehållsanalys användes för att analysera datamaterialet. Resultat: Sjuksköterskorna beskrev att brist på trygghet och tillit skapade ångest för patienter och deras närstående. Känslor av otillräcklighet gav ångest hos sjuksköterskorna. Mötet med döden väckte existentiella tankar och utlöste ångest hos patienter, deras närstående och sjuksköterskorna. Kontinuitet och tillgänglighet var viktiga för att ge trygghet. Sjuksköterskorna ansåg att bästa sättet att bearbeta och hantera svåra situationer var att samtala med kollegor och stödja varandra. Konklusion: Studien visar att tid och trygghet är centralt för att lindra ångest hos patienter, närstående och distriktssköterskor i palliativ vård. Palliativ vård är utmanade, kräver mod och kreativitet. Nyckelord: Palliativ vård, hemsjukvård, distriktssköterskor, ångest / Introduction: Today, community health nurses work increasingly more with the provision of end-of-life care. Dying and the existential dimension may cause anxiety in patients and their family. Background: Palliative care prevents and relieves suffering through early detection, careful analysis and treatment of pain and other physical, psychosocial and existential problems. It also includes support for the family during and after the period of care. Aim: The purpose of this study was to examine how community health nurses experienced anxiety during the last phase of a patient’s life. The nurses' experience of anxiety in dying patients, their families and in the nurses themselves was examined with a focus on the causes and attitudes. Design and method: The study used a qualitative design where four focus group interviews were conducted with 20 community health nurses. The data was analyzed using qualitative content analysis. Results: Nurses felt that lack of safeness and confidence created anxiety in patients and their families. Feelings of inadequacy created anxiety among nurses. According to the nurses encounter with death brought on existential thoughts and created anxiety among patients, their families and the nurses themselves. Continuity and accessibility were important to provide safeness. The nurses felt that the best way to process and handle difficult situations was through discussion with colleagues and by giving each other support. Conclusion: This study shows that according to nurses’ experiences, time and safeness are central to relieve anxiety in patients, family members and community health nurses in palliative care. Palliative care is challenging, demands courage and creativity.

Bakgrund: Lungcancer är den femte vanligaste cancerformen i Sverige, med dålig prognos och leder ofta till döden. Då bot inte längre är möjligt blir palliativ vård aktuellt. Detta betyder att patienten bör vara fri från smärta och plågsamma symtom, att man varken påskyndar eller skjuter upp döden och att döendet ska ses som en normal process. Syfte: Syftet var att beskriva patienters upplevelser av att leva med lungcancer i den palliativa fasen. Metod: Studien genomfördes som en litteraturstudie (overview), baserad på empiriska studier inom det valda ämnet. Sökning skedde i databaserna Cinahl, PubMed och PsycInfo.  Litteraturstudien grundades på tolv kritiskt granskade studier, både kvalitativa och kvantitativa, publicerade i vetenskapliga tidskrifter. Resultat: I resultatet framkom fysiska, psykiska, existentiella och sociala upplevelser. Resultatet presenterades med inspiration av Peter Strangs modell om symtomkontrollens betydelse i den palliativa vården. Diskussion: Resultatet diskuterades utifrån två fynd. Ett fynd var dyspné som upplevdes smärtsamt och förknippades med ångest och oro. Det andra fyndet var upplevelsen av förlust av olika slag. Slutsats: Svårt sjuka och döende patienter har rätt att bli vårdade av omsorgsfulla, medkännande och kunniga människor, som försöker förstå deras behov och som upplever det givande att hjälpa dem möta döden. / Background: Lung cancer is the fifth most common form of cancer in Sweden, with a poor prognosis and it often leads to death. As there is no cure, palliative care is applied. This means that the patient should not have to suffer from pain and agonizing symptoms. There is no affect that either hastens or postpones death and death should be considered as a normal process. Purpose: The purpose was to describe patients' experiences with regard to living with lung cancer in the palliative stage. Method: The study was performed as a literature overview, based on empirical studies within the chosen subject. Research was done using Cinahl, PubMed and PsycInfo databases. The literature study was based on twelve critically reviewed studies, qualitative and quantitative, published in scientific magazines. Results: Physical, mental, existential and social experiences emerged from the results. Results are presented, inspired by Peter Strang's model about the meaning of using system control in palliative care was used in the presentation of the results. Discussion: The result was based on two elements. A finding was dyspnea and was experienced painful and was associated with anxiety and worry. The second finding was the experience of loss of various kinds.   Conclusion: Patients who are fatally ill and facing death have the right to be nursed in a caring, empathetic way by experienced people who understand their needs and can appreciate the rewarding to meet death.

Bakgrund: Ett växande antal svårt cancersjuka människor föredrar att vårdas i hemmet. Närstående är en självklar del av modern palliativ vård, och det är en central uppgift för den palliativa vården att stödja även dem. Syfte: Syftet med litteraturstudien var att belysa närståendes behov av stöd vid vård i hemmet av vuxna cancersjuka i livets slutskede. Metod: Som underlag för denna litteraturstudie har 14 vetenskapliga artiklar använts inom tidsperioden 2001-2011. Resultat: Resultatet visade att närstående hade behov av stöd i den vårdande rollen av cancersjuk i hemmet som redovisas i 3 kategorier och 6 subkategorier. Det som framkom var betydelsen av att närstående var förberedda, att de fick stöd i att hantera den nya vardagen, samt att de fick bekräftelse i den vårdande rollen. Diskussion: Det var av betydelse att närstående kände sig delaktiga i beslutsprocessen att den cancersjuke vårdades i hemmet. Det var av vikt att närstående fick egen tid med professionella vårdare för samtal, samt blev sedda i den vårdande rollen. Närstående hade svårt att se den cancersjukes försämring och personlighetsförändring i betydelsen att livet närmade sig slutet. / Background: A growing number of seriously ill cancer patients prefer home care. Relatives are an integral part of modern palliative care and it is an essential task for the palliative care providers to support them as well. Aim: The aim of this literature based study was to highlight relatives’ need for support during home care of terminally ill adult cancer patients. Method: 14 scientific articles from 2001 to 2011 were used as the basis of this study. Results: The result showed that relatives’ need for support in their role as caregiver to cancer patients can be divided into three categories and six subcategories. It was shown how important it is for the relatives to be prepared, to receive support in handling their new everyday situation and to be recognised in their role as caregivers. Conclusion: It is imperative that relatives feel part of the decision process regarding home care of the cancer patient. Equally, it is significant to give relatives time on their own for dialogues with professional caregivers and for them to be acknowledged in their caregiving role. Relatives failed to see the deterioration and personality change in the cancer patient, due to that life was coming to an end.