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.

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.

Background: The Senate of Canada asserts that quality end-of-life care is the right of every Canadian. Yet, little is known about the quality of end-of-life care for dying children and their families. Purpose: The study purpose was to develop and test an instrument to measure parents’ perspectives on the quality of care provided to families before, at the time of, and following the death of a child. Methods: In study Phase I, key components of quality pediatric end-of-life care were synthesized through a systematic review of research literature then validated and extended through focus groups with bereaved parents. In Phase II, instrument items were developed to assess structures, processes, and outcomes important to quality end-of-life care, then tested for content and face validity by health professionals and bereaved parents. In Phase III, the instrument was administered to bereaved mothers from across Canada and psychometric testing conducted. Results: Instrument items were developed based on review of 67 manuscripts and 3 focus groups with 10 parents. The Content Validity Index for the instrument was 0.84 as assessed by 7 health professionals. The instrument was assessed by 6 bereaved parents for face and content validity as well as their cognitive understanding of the items. In the final phase, 128 mothers completed the instrument and 31 of those completed it twice. Initial evidence for test-retest reliability, internal consistency, and construct validity was demonstrated for 7 subscales: Connect with Families, Involve Parents, Share Information with Parents, Share Information among Health Professionals, Support Parents, Provide Care at Death, and Provide Bereavement Follow-up. Additional items with demonstrated content validity only were grouped into three domains: Support the Child, Support Siblings, and Structures of Care. Implications: This study is a significant step forward in comprehensive measurement of the quality of children’s end-of-life care. The instrument provides a mechanism for feedback to health professionals, health systems, and policy makers to improve care provided to families facing the death of a child.

Background: The Senate of Canada asserts that quality end-of-life care is the right of every Canadian. Yet, little is known about the quality of end-of-life care for dying children and their families. Purpose: The study purpose was to develop and test an instrument to measure parents’ perspectives on the quality of care provided to families before, at the time of, and following the death of a child. Methods: In study Phase I, key components of quality pediatric end-of-life care were synthesized through a systematic review of research literature then validated and extended through focus groups with bereaved parents. In Phase II, instrument items were developed to assess structures, processes, and outcomes important to quality end-of-life care, then tested for content and face validity by health professionals and bereaved parents. In Phase III, the instrument was administered to bereaved mothers from across Canada and psychometric testing conducted. Results: Instrument items were developed based on review of 67 manuscripts and 3 focus groups with 10 parents. The Content Validity Index for the instrument was 0.84 as assessed by 7 health professionals. The instrument was assessed by 6 bereaved parents for face and content validity as well as their cognitive understanding of the items. In the final phase, 128 mothers completed the instrument and 31 of those completed it twice. Initial evidence for test-retest reliability, internal consistency, and construct validity was demonstrated for 7 subscales: Connect with Families, Involve Parents, Share Information with Parents, Share Information among Health Professionals, Support Parents, Provide Care at Death, and Provide Bereavement Follow-up. Additional items with demonstrated content validity only were grouped into three domains: Support the Child, Support Siblings, and Structures of Care. Implications: This study is a significant step forward in comprehensive measurement of the quality of children’s end-of-life care. The instrument provides a mechanism for feedback to health professionals, health systems, and policy makers to improve care provided to families facing the death of a child.

Bakgrund: Det kan vara svårt för föräldrar till barn som vårdas i livets slutskede att inse att deras barn är döende. Många existentiella frågor och tankar uppstår hos föräldrarna. Trots att omfattningen av insatserna för vård i livets slutskede ökar finns det lite forskat inom området. Det kan resultera i att föräldrarnas önskemål och behov inte blir uppmärksammade. Syfte: Syftet med litteraturstudien var att belysa föräldrars upplevelser av att ha ett barn som vårdas i livets slutskede. Metod: En allmän litteraturstudie genomfördes. Utifrån studier publicerade i vetenskapliga artiklar sammanställdes fynd som svarade på syftet och bildade kategorier. Resultatet diskuterades utifrån Aaron Antonovskys KASAM. Resultat: Resultatet presenteras utifrån fyra kategorier; Föräldrars upplevelse av information och kommunikation, Föräldrars upplevelser av att vara delaktiga i omvårdnaden, Föräldrars upplevelser av relationen till vårdpersonalen och föräldrars emotionella och spirituella upplevelser. Resultatet svarar för föräldrarnas upplevelser av att ha ett barn som vårdas i livets slutskede. Diskussion: KASAM är individuellt och föräldrars nivå av KASAM kan påverka deras förmåga att hantera att deras barn vårdas i livet slutskede. KASAM kan inte påverkas över en natt utan förändring sker under längre tid. Sjuksköterskans uppgift blir att individanpassa hjälpen efter föräldrarnas förmåga för begriplighet, hanterbarhet och meningsfullhet. / Background: It can be hard for parents with a child in end-of-life care to comprehend that their child´s dying. Many existential questions arise from the parents. Despite increased efforts to improve end-of-life care for children, research into this is sparse. That results in that the needs and wishes of the parents are overlooked. Aim: The aim of the study was to illuminate parents’ experiences of having a child in end-of-life care. Method: A literature review was conducted. Based on studies published in scientific articles findings that responded to the purpose were compiled. This created the result’s four categories. They are discussed in relation to Aaron Antonovsky’s theory of SOC. Results: The results are presented as they relate to parent’s experiences from information and communication, being part of the care of the child, the relationship with staff and parents emotional and spiritual experience. The categories account for parent´s experiences from having a child cared for at the end-of-life. Discussion: SOC is individual and parents' level of SOC affects their ability to manage their children's palliative care. SOC can´t be altered overnight, change occurs over time. The nurse´s assignation is to individualize the help for the parents' capacity for comprehensibility, manageability and meaningfulness.

Bakgrund: När en närstående befinner sig i livets slutskede påverkas hela familjen, genom att deras liv förändras och sorg och lidande uppstår. Syfte: Syftet med denna studie var att beskriva familjens upplevelser av sorg och hur deras liv påverkas när en närstående vårdas i livets slutskede, samt sjuksköterskans roll i detta skede. Metod: En litteraturstudie genomfördes där 14 vetenskapliga artiklar med kvalitativ ansats granskades och analyserades. Resultat: Tre övergripande teman framkom: familjens sorg, påverkan på familjen och vårdpersonalens bemötande och stöd. Familjen blev överraskad av sina starka sorgereaktioner. En öppen kommunikation mellan patient och familj var ofta svårt att upprätthålla. Påverkan på familjen yttrade sig med exempelvis konflikter inom familjen, att den blev isolerad och att ohälsa kunde uppstå orsakad av den arbetsbelastning vårdansvaret medförde. Vårdpersonalens bemötande och stöd upplevdes både positivt och negativt. Konklusion: Sorg är ett mer komplicerad fenomen än förväntat. Den är en individuell upplevelse och måste alltid betraktas i sitt sammanhang där den uppstår. För att underlätta familjens sorgeupplevelse och lidande behövs det förbättrade kommunikationskunskaper hos vårdpersonalen och en tillämpning av familjecentrerad omvårdnad inom palliativ vård. / Background: Being faced with the end of life of a loved one has an extensive impact on the whole family, altering their lives and causing grief and suffering. Aim: The aim of this study was to describe family experiences of grief, what impact bereavement had on their lives and also how nurses can support them in their situation. Method: A literature study was conducted and 14 scientific articles were reviewed and analyzed. Result: Three main themes emerged: family’s grief, impact on the family and encounters with health professionals and their support. Families were surprised by their intense grieving reactions.  An open communication between family and patient was often difficult to maintain. Families were affected by the situation with for example family conflicts, a tendency towards isolation and poor health caused by the workload of patient care. Support given by health care professionals was experienced as both positive and negative. Conclusion: Grief is a far more complicated phenomenon than expected. It has to be looked at individually and in its own context each time it occurs. Improved communication skills and an orientation toward family centered care are needed to improve family’s suffering and grief experience.

Syfte: Att beskriva nyutexaminerade allmänsjuksköterskors upplevelser av att vårda patienter i livets slut.  Metod: Författaren har genomfört en kvalitativ intervjustudie med beskrivande design. Undersökningsgruppen valdes ut genom bekvämlighetsurval och bestod av sju allmänsjuksköterskor som jobbat max två år som sjuksköterska. Det insamlade materialet analyserades utifrån en kvalitativ innehållsanalys. Resultat I analysen framkom sju kategorier. De intervjuade sjuksköterskorna beskrev en tillfredsställelse i arbetet med patienter i livets slut, vilket kunde dels bero på att de utvecklades i det jobb de gör, men det kunde också bero på att de fick uppskattning från patient och anhöriga. Trots arbetstillfredsställelsen som sjuksköterskorna beskrev kunde de även få en känsla av otillräcklighet i vårdandet av patienter i livets slut, vilket kunde vara en konsekvens av brist på tid och personal. De beskrev även att de ibland blir ledsna och grubblar efter att en patient avlidit. Sjuksköterskorna beskrev även en glädje trots sorg i sitt jobb, detta kunde vara om de såg att en patient mådde bra trots sin sjukdom. Erfarenhet ger trygghet ansåg också sjuksköterskorna. Både jobbigt och befriande när döden inträdde var något som sjuksköteskorna beskrev. Nära och fin men påfrestande relation var hur sjuksköterskorna beskrev relationen till patient och anhöriga.  Slutsats: Anhöriga hade en stor del i vårdandet av patienter i livets slut, och detta påverkade hur sjuksköterskor tänkte och kände kring detta. I mötet med patienter och deras familjer kunde trygghet som kommer med erfarenhet, underlätta. / Aim: To describe the new graduated registered general nurses' experiences of caring for patients in the end of life. Method: The author conducted a qualitative interview with descriptive design. The study group was selected by convenience sample and consisted of seven general nurses who had worked maximum two years as a nurse. The collected material was analyzed from a qualitative content analysis. Results: The analysis revealed seven categories. The nurses that were interviewed described a job satisfaction that could partly be because they were developed in the work they do, but it could also be because they got appreciation from patients and relatives. Despite the job satisfaction that the nurses described, they could also get a sense of inadequacy, which could be a consequence of lack of time and personnel. They also explained that they sometimes become sad and would think a lot after a patient died. The nurses also described a joy in their job, this could be if they saw that the patients were feeling well despite their illness. With experience the nurses felt more confidence in their job. The nurses also explained that they thought it was both difficult and liberating when death occurred. Near and nice but stressful relationship is how the nurses described the relationship with the patient and relatives.  Conclusion: Relatives have a big part in caring for patients in end of life, and this affects the way nurses think and feel about the situation. In meeting with patients and their families, feeling safe in the situation because of earlier experience, can make it easier.

Bakgrund: Att vara närstående åt någon som befinner sig livets slut är en stor påfrestning där delaktigheten blir central. Hur närstående upplever delaktigheten är beroende på hur information ges. Att vara delaktig innebär att ha en del i, att vara närvarande och medverka i vården av en annan person. Utifrån ett systemteoretiskt tänkande betraktas personer i sitt totala sammanhang där även de närstående hamnar i fokus. Syfte: Att belysa närståendes upplevelser av delaktighet i samband med vård i livets slutskede. Metod: Studien genomfördes som en litteraturöversikt baserade på vetenskapliga artiklar som analyserades med en innehållsanalys. Resultat: Bygger på tre huvudkategorier; från att ha kontroll till att famla i mörker, att befinna sig i en svår livssituation och att kastas in i en ny roll. Delaktigheten yttrade sig i positiva och negativa känslor som närstående pendlade mellan. Andershed och Ternestedts förståelseram användes för att strukturera resultatet. Slutsats: Då närstående befinner sig i en besvärlig situation är det väsentligt att vårdpersonal ger utrymme, involverar och ser till närståendes individuella behov. Att byta roll med de närstående, ställa öppna frågor kan göra att de blir bekräfta och sedda vilket kan vara ett sätt att göra dem delaktiga på ett meningsfullt sätt. / Background: Being a relative to someone who is at the end of life is a big strain in which participation is a key. How relatives experience participation is dependent on how the information is given. Being involved means to be a part of, to be present and to participate in the care of another person. On the basis of systems theory people are considered in their total context, where relatives are also in focus. Aim: To describe relatives’ experiences of participation during end of life care. Method: The study was conducted as a literary review based on scientific articles that were analyzed with a content analysis. Results: Based on three main categories, from having the control to a grope in the dark, to be in a difficult situation of life and to being thrown into a new role. The participation of the relatives oscillated between positive and negative feelings. Andershed and Ternestedts framework was used to structure the results. Conclusion: When relatives are in a difficult life situation it is essential that health professionals give them space, involve them, and ensure their individual needs. Changing roles with relatives and asking open-ended questions can make relatives feel like participants who are confirmed and involved in a meaningful manner.

<p><strong>Bakgrund: </strong>Den palliativa vården ska vila på etiska utgångspunkter och en helhetssyn av patienten samt utgå från patientens behov. Centralt för den palliativa sjuksköterskan är att vara relationsskapande, stödjande, kommunikativ och koordinerande. God omvårdnad i livets palliativa slutskede och vilka nutritionsåtgärder som ska vidtas när inte längre föda via munnen är möjligt, är svåra beslut att ta för att ge patienten en fridfull död. <strong>Syfte: </strong>Syftet med studien är att belysa sjuksköterskors erfarenheter av att ge, avsluta eller avstå enteral eller parenteral nutrition till patienter i palliativt slutskede. <strong>Metod: </strong>En<strong> </strong>litteraturöversikt genomfördes där totalt 10 kvalitativa och kvantitativa vetenskapliga artiklar granskades och analyserades enligt Fribergs (2006) modell. <strong>Resultat: </strong>Ur resultatet identifierades fyra kategorier, vilka var <em>livskvalitet, etiska aspekter, kommunikation</em> <em>och utbildning </em>med tio tillhörande subkategorier. Resultatet visar att om sjuksköterskor har en tidig dialog med patient, anhörig och läkare angående nutritionsåtgärder i palliativt slutskede skapas bättre förutsättningar för en individuell vårdplan och bevarande av patientens autonomi. Samtidigt framkommer det att sjuksköterskor känner sig otrygga i dialogen angående nutritionsåtgärder på grund av bristande kunskap om den fysiologiska processen i döendefasen. <strong>Konklusion: </strong>Mer utbildning behövs för att sjuksköterskor ska känna sig tryggare i sin roll avseende nutritionsåtgärder i palliativt slutskede.</p><p> </p> / <p><strong>Background: </strong>Palliative care requires an ethical and comprehensive view of the patient and his/her needs, and it is essential to create a supportive relationship with the patient while efficiently coordinating with one’s colleagues. It is difficult for nurses to makethe proper decisions about nutritional measures in order for the patient to have a peaceful death. <strong>Aim:</strong> The aim of this study is to highlight nurses’ experiences with giving, finishing or abandoning nasogastric intubation and parenteral nutrition with patients during the final phase of palliative care. <strong>Method:</strong> A literature survey was conducted and 10 scientific articles were reviewed and analyzed according to the Friberg (2006) model. <strong>Result:</strong> Four categories (with ten subcategories) were identified: <em>life</em><em> quality, ethical aspects, communication, and education</em>. Nurses who create an early dialogue with the patient, relatives, and doctors about nutritional measures during the final phase of life improve individual care and preserve the patient’s autonomy. However, nurses feel insecure when it comes to nutritional measures because of a lack of knowledge about the physiological process in the phase of death. <strong>Conclusion:</strong> Further education is needed in order for nurses to feel more secure when making measures about nutrition in the final phase of life.</p>

<p>Tidigare forskning visade att omhändertagande möten med sjuksköterskan stärkte patientens självbild och skapade känslor av trygghet. Möten med sjuksköterskan som inte var omhändertagande skapade känslor av att bli nedbruten hos patienten. Patienterna ville vara delaktiga i sin egen vård. Det var inte lätt att vara anhörig till någon i livets slutskede. Det fanns inte mycket forskning skrivet om patientens upplevelser i livets slut. Syftet med studien är att beskriva patientens upplevelser av att befinna sig i livets slutskede. Studien var en litteraturöversikt med en kvalitativ ansats. I analysen jämfördes likheter och skillnader i studiernas resultat. Resultatet visade att en anpassad vård var av betydelse för patientens upplevelser av självständighet. När patienten befann sig tillsammans med familjen upplevdes samhörighet och välbefinnande. En god relation till sjuksköterskan betydde mycket för patienten i livets slutskede. En sämre relation till sjuksköterskan skapade känslor av att bli kränkt. Studien gav förståelse för vikten av att involvera patienten i sin egen vård. Studien bidrog även till en förståelse för betydelsen av att bekräfta varje patient som en individ.</p> / <p>Previous research showed that caring meetings with the nurse strengthened the patients self image and feelings of security. Uncaring meetings with the nurse created feelings of being broken. Patients wanted to be involved in their own care. Being next of kin to someone in the end of life was not easy. Little was written about patient experiences in the end of life. The aim of the study is to describe the patient’s experiences of being in the end of life. The study was a literature review with a qualitative approach. Differences and similarities in the results of the studies were compared in the analysis. The results showed that an adapted care was of importance for patient feelings of independence. Feelings of togetherness and wellbeing arose when the patients were together with the family. A good relation with the nurse meant a lot for the patient at the end of life. A bad relation to the nurse could create feelings of being violated. The study created an understanding of the importance to offer patients an opportunity to be involved in their own care. Furthermore it gave an understanding of the importance to confirm the patient as an individual. </p>