<p><p>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.</p></p> / <p><p>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></p>

This dissertation will support full ethical endorsement of terminal sedation for those most urgently in crisis and need of beneficence, those who are dying and in the final hours or days and suffering. To clarify the practice I first detail ethical differences between euthanasia, physician assisted suicide and terminal sedation. Moreover, I identify new areas where harms and benefits need to be evaluated as affecting not only patients, but also families and caregivers. I evaluate the current practice to allow the development of ethical guidelines and greater consensus on deciding the hard cases. This work may also serve to assist those looking to enlarge the practice in the future with ETS for those with debilitating diseases or disability, but they are not my primary goal. Below is the standard I propose for moral allowability for the use of terminal sedation. I will refer to it often in the pages that follow simply as my standard . Terminal sedation is the appropriate and intentional use of medications (benzodiazepines and/or narcotics) to produce ongoing, deep unconsciousness upon 1) a terminal patient’s (or surrogates) request due to 2) suffering intractable pain or other distressing clinical symptoms intolerable to the patient when 3) death is expected within hours or days (less than two weeks) due to the terminal illness, injury, or disease. I offer two versions of initial guidelines for development of hospital policy. The first version outlines minimal guidelines that ought to be utilized to allow TS for patients who fit my standard. The minimal guideline is based upon the recommendations of the American Medical Association with some modifications. The guideline is admittedly restrictive in hopes of gaining wider societal support for a currently controversial practice. Secondly, I offer more moderate guidelines for policy that could become a standard in the future. It maintains the restrictive focus of the minimal guidelines and offers additional education and support to others which has yet to be broadly provided. The moderate guidelines would mark an important step forward for allowing more choices in dying and offering additional supports to those involved with dying patients.

Bakgrund: 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. Syfte: Syftet med studien är att belysa sjuksköterskors erfarenheter av att ge, avsluta eller avstå enteral eller parenteral nutrition till patienter i palliativt slutskede. Metod: En litteraturöversikt genomfördes där totalt 10 kvalitativa och kvantitativa vetenskapliga artiklar granskades och analyserades enligt Fribergs (2006) modell. Resultat: Ur resultatet identifierades fyra kategorier, vilka var livskvalitet, etiska aspekter, kommunikation och utbildning 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. Konklusion: Mer utbildning behövs för att sjuksköterskor ska känna sig tryggare i sin roll avseende nutritionsåtgärder i palliativt slutskede. / Background: 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. Aim: 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. Method: A literature survey was conducted and 10 scientific articles were reviewed and analyzed according to the Friberg (2006) model. Result: Four categories (with ten subcategories) were identified: life quality, ethical aspects, communication, and education. 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. Conclusion: Further education is needed in order for nurses to feel more secure when making measures about nutrition in the final phase of life.

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. / 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.

When someone becomes seriously ill from cancer their relatives experience a great suffering from observing the changes in their loved ones as a result of the disease. They felt that they did not receive the support and information they needed to process their difficult lives.It also emerged that the relatives didn’t think the nursing staff treated and saw the family as a whole. The purpose of the study was to describe the suffering of families, as they experienced that during the final stages of a cancer patient's life. An inductive, manifest, content analysis has been carried out in five autobiographies written by relatives of patients, who had died as a result of cancer. Biographies were reviewed by the Graneheim and Lundman's method of analysis. We used Katie Eriksson’s scientific theories of care regarding suffering as a theoretical framework. The result has collected material presented in three categories: fear, sadness, and frustration which mirrors the suffering of relatives in these books. The results showed that the relatives denied the disease's existence, experienced a fear of the disease symptoms, death, and a future without the patient. The relatives describe the grief that they felt about the prospect of being left alone, about the patient's deterioration, and of not being seen as individuals. Finally the relatives describe the frustration they feel over the panic, stress, fatigue and anger that they experience in the end of the patients life. / När någon blir svårt sjuk i cancer upplever dess anhöriga ett stort lidande över att se sin närmaste förändras till följd av sjukdomen. De upplevde att de inte fick det stöd och den information som de behövde för att hantera sin svåra livssituation. Det framkom också att anhöriga inte tyckte vårdpersonalen såg och vårdade familjen som en helhet. Syftet med examensarbetet var därför att beskriva anhörigas lidande så som de upplever det under den sista tiden av den cancersjuka patientens liv. En induktiv manifest innehållsanalys har genomförts på fem självbiografier skrivna av anhöriga till patienter som avlider till följd av cancer. Biografierna granskades med Graneheim och Lundmans analysmetod. Som teoretisk referensram används Erikssons vårdvetenskapliga teorier om lidande. I resultatet har insamlat material redovisats i tre kategorier; rädsla, sorg och frustration som speglar de anhörigas lidande i böckerna. Resultatet visar att de anhöriga förnekar sjukdomens existens och upplever en rädsla över sjukdomens symtom, döden och en framtid utan patienten. De anhöriga beskriver den sorg de upplever över att bli lämnade ensamma, över patientens försämring och över att inte bli sedda som individer. Slutligen beskriver anhöriga en frustration över den förtvivlan, panik, stress, trötthet och vrede som de upplever under sista tiden patienten finns i livet.

Aim. The aim of the study is to highlight Dutch nurses’ opinions about assisted death. Background. Since 2002 it has been legally justified for physicians to assist a patients’ death in the Netherlands. Public and ethical debate, scientific research, guidelines for prudent practice and legislatures focus predominantly on the role of physicians, seemingly assuming that the tasks of other health care professionals are less important. Though, the nurse cares for the patient on a daily basis, and has a close relationship with the terminally ill and their next of kin. Method. A qualitative method was used. Twelve nurses were used in the study, and they received a questionnaire with open questions where they were supposed to motivate their personal opinions related to assisted death. Results. Three main categories (and seven sub categories) highlights the nurses’ opinions; the meeting (discussion, next of kin), inner conflicts (religion, participation) and influences (pain relief, living will, laws and criteria). Conclusions. The Swedish taboo concerning assisted death need to be removed. The quality of the palliative care is decisive of when the patients’ request of assisted death is putted. Continuous discussion elicits underlying factors of why a request of assisted death is putted. / Syfte. Syftet med studien är att belysa nederländska sjuksköterskors personliga åsikter om dödshjälp. Bakgrund. I Nederländerna har det varit lagligt för läkare att assistera en patients död sedan 2002. I den allmänna och etiska diskussionen kring beslut som rör läkarassisterad död, i forskningen, i riktlinjer och i lagstiftning fokuseras på läkarens roll, övriga vårdgivares arbetsuppgifter antas vara mindre viktiga. Detta antagande kan ifrågasättas då sjuksköterskan vårdar patienten dagligen, ofta i en nära relation till den sjuke och hans eller hennes närstående i livets slutskede. Metod. För att uppnå studiens syfte användes en kvalitativ metod. I studien ingick tolv nederländska sjuksköterskor som fick ett frågeformulär med öppna frågor där de skulle motivera sina personliga åsikter till dödshjälp. Resultat. Resultatet visar tre huvudkategorier (och sju underkategorier) som belyser sjuksköterskans åsikt; mötet (diskussion, anhöriga), inre konflikter (religion, deltagande) samt influenser (smärtlindring, testamente, lagar och kriterier). Konklusion. Den svenska tabun kring läkarassisterad död bör tas bort för att utveckla debatten. Kvaliteten på den palliativa vården avgör ofta om och när patientens förfrågan om dödshjälp kommer. Kontinuerlig diskussion tydliggör underliggande faktorer till varför en förfrågan om dödshjälp ställs.

Vård i livets slutskede är något som påverkar sjuksköterskor och vårdpersonal på olika sätt, exempelvis emotionellt. Vård i livets slutskede, även kallad palliativ vård, syftar till att lindra lidande för patienter i deras sista tid i livet. Litteraturstudiens syfte var att belysa upplevelserna av att vårda dessa patienter. Resultatet visade att upplevelserna påverkades av kulturen och de egna erfarenheterna. De teman som framkom var - omvårdnad av patienten, mötet med närstående, samarbete i teamet och existentiella upplevelser. Svårigheter med att vårda patienter i livets slutskede kunde exempelvis bero på bristande kommunikation och otillräcklig erfarenhet. Dock ansåg flertalet att arbetet var givande och utvecklande för dom och de hade en positiv inställning till palliativ vård och döden, vilket ofta kom med erfarenhet. Forskning samt fördjupad kunskap inom ämnet är därför viktigt för en ökad förståelse för att förbättra den palliativa vården för patienten samt sjuksköterskans arbetsmiljö. Även en förbättring i kommunikationen i teamet för palliativ vård behövs för att optimera arbetet med patienter i livets slutskede samtidigt som det främjar en förbättrad arbetsmiljö för sjuksköterskor och vårdpersonal. / End-of-life care affects nurses and health professionals in different ways. End-of-life care, so called palliative care, aims to facilitate for patients in their remaining days of life. The purpose of this study was to illustrate the experience of caring these patients. The study was conducted as a literature review, based on 15 articles. The results showed that the experiences were affected both by culture and what themselves have gone through. Four themes emerged; Caring for the patients, meeting with relatives, co-operation of the team and existential experiences. Difficulties in end-of-life care could for exemple be due to lack of communication and lack of experience. However, the study also showed that the majority percieved their work as rewarding and fulfilling and they had a positive approach to palliativ care and dying which often came with experience. Further research and deepend knowledge in the area are important for a better understanding and to improve palliative care for patients and the working environment for healthcare workers. Also an improvement in communication in palliativ care is needed to optimize the work with patiens in the final stages of life and at the same time a better work environment for nurses and other healt professionals.

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.