Yes / The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

No / Complete : FC 16. We aimed to develop a complex intervention to improve end of life care (EOLC) for people with advanced dementia and their carers. We collected data from 4 sources: literature review; qualitative data from health and social care professionals, carers and people with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health and social care policy documents. Method and results: To develop the intervention we synthesised these data. 49 emerging statements were considered in workshops with health and social care professionals across UK to achieve consensus using the RAND Appropriateness Method (RAM) to develop components of the intervention. 1. Prior to workshops we sent invitees the RAM form consisting of 49 statements and asked them to rate these on a scale of 1-9 for appropriateness. 2. At the workshops statements rated as ‘uncertain’ or ‘inappropriate’ were discussed and all 49 items were rated again. 3. Analysis resulted in the retention of 29 statements rated as appropriate. 4. Post workshop attendees were sent the RAM form and asked to rate 29 statements for necessity. All 29 statements were rated as necessary and retained then mapped onto impact theories (Grol 2007) comprised of individual, social interaction, organisational or political/ economic context, and categorised as enablers and barriers for an intervention. Three core intervention components emerged: 1. Integrated systems and approaches to the delivery of careoperational plan 2. Education, training and support for health and social care professionals and carers - utilisation plan 3. Political and economic context dependent on reimbursement and contracting through CCG commissioning. Discussion: The next phase is to pilot components 1 and 2 of the intervention in a naturalistic experiment in one inner city and one suburban locality at different stages of development for services for EOLC for people with dementia and their carers.

No

Yes

Bakgrund: Cancer kan uppstå i diverse delar av kroppen. Cancervården använder sig av två faser. Den kurativa fasen där målet är att patienten ska bli botad samt den palliativa fasen där vårdinriktningen är palliativ och sjukdomen inte längre går att bota. Patienter med cancer kan leva flera år i en tidig palliativ fas där behandlings målet är att fördröja sjukdomsförloppet. Därefter träder den sena palliativa fasen in där fokusering på välbefinnande och smärtlindring är huvudändamål. Det är i skiftet mellan de olika faserna som brytpunktssamtalet främst äger rum. Sjuksköterskor kan ha en betydande roll i processen kring brytpunktssamtal. Syfte: Syftet med denna litteraturstudie var att undersöka och sammanställa sjuksköterskors upplevelser och erfarenheter av brytpunktsamtal hos patienter med cancer Metod: En litteraturstudie med systematisk översikt. Tio artiklar med kvalitativ ansats kvalitégranskades och sammanställdes genom innehållsanalys. Resultat: Resultatet identifierades till tre huvudteman; Upplevelser och erfarenheter kring samverkan med patient och läkare, relationer i anknytning till brytpunktssamtal och sjuksköterskans upplevelser av hopp. Sjuksköterskor upplevde att samverkan med läkare samt tydlig kommunikation med patient var av vikt. Relationen till patienter och närstående var en faktor som sjuksköterskor upplevde fanns med i brytpunktssamtalet. Hopp var en känsla som identifierades hos sjuksköterskor under brytpunktssamtal. Konklusion: Sjuksköterskor kan i samband med brytpunktssamtal med både för och nackdelar hamna i kläm mellan patienter och läkare. Sjuksköterskor är i behov av tydlig information i anknytning till brytpunktssamtal för att kunna bistå patienter och samverka inom det multidisciplinära teamet runt patienten. Sjuksköterskor oroar sig över att beröva hopp från patienter genom att diskutera och besvara frågor kring sämre prognoser. / Background: Cancer can occur in different areas of the human body. Cancer care consists of two different phases. The curative phase when the goal is to cure the patient and the palliative phase when cure is no longer possible and the goal changes to comfort care. Patients with cancer can live for several years in the early stages of palliative care when the goal is to prolong the patient’s life and slow down the progression of the disease. When prolonging life is no longer possible the late palliative phase sets in and the goal of care is to make the patient comfortable and to manage symptoms of the disease. It is in between these phases the discussion called breaking point takes place. Nurses have a meaningful role in the process around breaking point. Purpose: The purpose of this study is to explore and compile nurses’ experiences of discussion around breaking point with patients with cancer. Method: A systematic literature review. Ten articles with qualitative approach were graded and compiled through content analysis. Result: The results was identified into three main themes; Nurses experience of cooperation between physicians and patients, relationship within breaking point and the nurses experience of hope. Nurses experienced that cooperation with doctors and evident communication with patients was important. The relationship with patients and relatives was an element that was present during breaking point conversation according to nurses. Hope was an emotion that was identified among nurses during breaking point conversations. Conclusion: Nurses can in relation to the discussion around breaking point get stuck in the middle between patients and the physicians which has both advantages and disadvantages. Nurses can through their work with the patient establish a relationship that involves confidence between the patient and the nurse. This relationship can benefit everyone involved in the breaking point discussion. Nurses are concerned about depriving their patients of hope when talking about their worsening prognosis.

End-of-life (EOL) care decisions present a challenge for family caregivers. Despite the increasing number of terminally ill patients in need of pain management and comfort care, there is limited qualitative data about how populations in the developing world can access culturally appropriate resources and EOL support. In this phenomenological study, 17 Garifuna family caregivers in southern Belize were interviewed about their experience caring for terminally family members. The conceptual frameworks were Kübler-Ross’s hospice approach and Watson’s theory of human caring. The two theories were selected based on their significance to this process: Kübler Ross’s hospice approach and its impact on the family system during the end stage of life and Watson’s theory of human caring for its emphasis on the impact of the importance of meeting the basic needs of individuals. NVivo 12 was used to code and generate themes for further analysis. Caregivers who said they would not utilize support outside of the home were those who were committed not do so at the request of the patient. Caregivers who cared for their family member and those who could financially afford to hire caregivers in their home to assist with their relative said they would not utilize nonfamily support. All others, regardless of relationship to the patient, indicated they would have accepted care if the environment were safe, caring, and culturally sensitive. Additionally, the caregivers saw their needs as secondary and insignificant compared to the comfort and care of the patient. This study may contribute to positive social change by revealing strategies and services that could be included in the design of a health services delivery system to meet the needs of individuals facing EOL decisions.

我們的生活中免不了會有身邊親友去世的經驗，甚至每日的報章媒體也都隨處看得到有人因天災、意外、疾病等原因而死亡的消息，故說死亡的陰影是如影隨形跟著每一個人，既然每人或早或晚都得面對死亡這一關，那麼對這個人生的重大課題，值得認真去面對它、瞭解它。 而本研究採取深度訪談法，主要以正德社會福利慈善基金會的「西方蓮社」臺北分社助念志工為主，以助念經驗逾兩年以上者挑選五位作訪談之研究；另外訪問兩位承天禪寺蓮池共修會助念志工，至於其他四位受訪者各隸屬於法鼓山、諾那精舍、靈巖山念佛會、圓山念佛會，合計本文之訪談助念志工共有十一位。而本文所謂的助念，係指對臨終者的開導佛理與幫助亡者提起正念，專心念「阿彌陀佛」佛號，祈求集合眾人專心念佛的力量，幫助亡者蒙佛接引，往生西方極樂世界。 研究結果發現如下：一.助念瑞相，不可思議；二.寂滅為樂，不再輪迴；三.深信切願，念佛要深；四.風不止而樹茁壯，親不待而勤助念；五.肉體幻滅，神識仍在；六.莫存僥倖，平日勤修；七.助念志工，不與人爭；八.提起正念，安定亡靈。 關於助念志工的生命觀，為藉假修真、修行往生，生死何重、死為重矣，深信切願、必能往生。其關係圓融之研究，則分為志工團體合作默契、家人關係的圓融、鄰居關係的圓融、工作單位的關係圓融、人生觀之關係圓融等研究向度，總歸其看法為「人生如過客，有何好計較」、「修行要緊，不與人爭」、「別人都對，抱歉我錯」、「面對現實，明辨真假」、「富貴在天，不怕吃虧」。 本文並依據研究發現，對助念志工的建議為：至誠懇切、念佛要深；參透生死、自度度人；發心在剎那、恆持到永遠。對死者與家屬的建議為：生前要預立遺囑，交待後事。對社會大眾的建議為：每一個家庭最少有一兩位成員要懂得助念。對醫療體系的建議為：培訓更多志工、義工來從事臨終關懷的工作。對佛教道場的建議為：加強宣導助念的方法與功效，讓「助念」普及化。對政府機構的建議為：培訓更多宗教師等專業人士。對葬儀社的建議為：避免打斷助念流程，協助讓助念工作圓滿、助亡者往西。 關鍵詞： 助念、助念志工、生命觀、關係圓融 / We cannot avoid encountering and experiencing the death of loved ones around us in our lives. Even through media or newspaper, we read about people dying of sickness, accidents, and natural disasters, just to name a few. We can say that everyone is coupled with death. Since facing death is something one must deal with sooner or later, we can say it is one of the most important studies in our lives. It is worthy for us to think about it and understand it seriously. This study applies the in-depth interview of qualitative research. There are eleven volunteers of End-of-Life Chanting as the research population in this study, including interviewing the main study group, five volunteers from Cheng Te Western Lotus Society, Taipei Chapter, who have more than two years of End-of-Life Chanting experience, the other volunteers from different five groups. In this study, End-of-Life Chanting refers to the process of the Buddhist Chanting Assistance, including both the counseling and the last rite ceremonies, and by uniting the full will power of the End-of-Life Chanting group, chanting Amitabha’s name to help the deceased be escorted by the Buddha to reside in Western Pureland. This study concludes the following: 1. The corpse has a peaceful appearance, which is simply amazing 2. At peace with being dead, not returning back to the life of being human 3. Recite sutra sincerely and believe deeply 4. Worship the deceased parents by reciting sutra and End-of-Life Chanting 5. The spirit of the dead is still alive although the flesh no longer exists 6. Recite sutra diligently and regularly 7. Don’t argue or compete with others 8. Calm the soul of the dead The life philosophy of End-of-Life Chanting volunteers include weighing in the importance of life and death in order to know to take death seriously, reciting sutra sincerely and diligently, believing that it will bring life after death. The studies of the harmonious relationship includes researching the team spirit and team work among End-of-Life Chanting volunteers, relationships among family members, neighbors, and colleagues, and the attitudes toward life. In short, it concludes that, “life is short, why arguing with others?”“the cultivation of oneself is important, competing with others is not necessary”, “others are always right, I need to work on my mistakes”, “facing with the reality of facts, telling the right from wrong”, and “regards the wealth as a gift from God, and not being afraid to be taken advantage of”. . Based on the research findings, there are some suggestions: 1. To End-of-Life Chanting volunteers : recite sutra sincerely；believe that life is unpredictable and chanting is a good deed benefiting others and yourselves；do a good deed at one moment but maintain and support it till forever. 2. To the surviving family members: Have a will made before death in order to set up everything and let your wishes be known 3. To the society：Every family should at least have one or two members who know the work of End-of-Life Chanting ceremonies. 4. To the hospital and medical field: Educate and train more volunteers to engage in the End-of-Life Chanting ceremonies. 5. To the Buddhist temples：To publicize the method and effectiveness of the End-of-Life Chanting, make End-of-Life Chanting more popular and wide- spread . 6. To the government：Educate and train more religious professionals. 7. To the mortuary: Avoid breaking the process of End-of-Life Chanting，and assist the End-of-Life Chanting ceremonies to help the dead reach the Western Pureland. key words：a) End-of-Life Chanting，b) volunteers of End-of-Life Chanting， c) the life philosophy， d) the harmonious relationship

Denna uppsats har som syfte att undersöka om musik används i palliativ vård i Sverige och hur det i så fall beskrivs, motiveras och dokumenteras. Det är en kvalitativ intervjustudie med hermeneutisk förståelseansats. Intervjuer har genomförts med fem personer med olika yrkesprofession inom palliativ vård (sjuksköterska, sjukgymnast, arbetsterapeut, kurator och överläkare). Kontakt med de intervjuade har upprättats genom ett upprop i ett nyhetsbrev som ges ut av Svenskt Palliativt Nätverk, SPN. I uppsatsen ges en teoretisk bakgrund om palliativ vård, kris, etik, död, existentiella frågor, musik, musikterapi samt musikterapi i palliativ vård. Resultatet visar att de intervjuade använder musik i sitt vårdarbete men ingen är professionell musiker eller utbildad musikterapeut. Musikanvändningen beskrivs av informanterna genom konkreta exempel från vårdsituationer och den motiveras dels utifrån personliga erfarenheter av musikupplevelse dels med allmänna reflektioner över musikens olika möjligheter till påverkan fysiskt, psykiskt och socialt i livets slutskede. / This thesis aims to examine whether music is used in palliative care in Sweden and how it is described and justified. It is a qualitative study with hermeneutic approach. The survey consists of interviews with five different professionals working in palliative care (nurse, physiotherapist, occupational therapist, counselor, physician). Contact with the interviewees is established by a proclamation of a newsletter published by Swedish Palliative Network, SPN. The thesis provides a theoretical background of palliative care, crisis, death, ethics, music, music therapy and music therapy in palliative care. The result demonstrates that music is used in care situations and is justified by concrete experiences of how music can affect people physically, mentally and socially in the final stages of life.

End-of-life care (EOLC) has become a significant area of expertise in the intensive care unit (ICU). Critical care nurses are the primary caregivers of patients in the ICU and they provide EOLC for patients and families daily. Nurses have portrayed EOLC as difficult and demanding work; yet, they have also described their experiences of providing EOLC as rewarding, gratifying, and a privilege. The purpose of this study was to explore nurses’ meaningful experiences with providing EOLC for patients and families in the context of the ICU. Van Manen’s approach to interpretive phenomenology was used. Unstructured face-to-face interviews were conducted with six registered nurses who were employed in a medical/surgical tertiary care ICU. The interviews were audio-recorded, transcribed, and analyzed. The essence of nurses’ meaningful experiences in providing EOLC was ‘being able to make a difference’. For the nurses, being able to make a difference reflected their efforts to create a good death for the dying patient and their family. The nurses had to navigate a variety of challenges that affected the creation of a good death, however, they made it work by building relationships quickly with families, taking care of themselves, and recognizing it’s a privilege to provide EOLC. These research findings contribute to an expanding body of knowledge and understanding with regards to nurses’ role with the provision of EOLC in the ICU.

Bakgrund och problemformulering: Vård i livets slutskede innebär att vården övergår från att vara livsförlängande till att vara lindrande. Vården kan pågå från dagar till månader och det är viktigt att sjuksköterskan anpassar vården utifrån patientens hälso- och livssituation. Sjuksköterskan ska erbjuda patienten en säker och evidensbaserad vård som utgår från patientens aktuella behov och önskemål. Syfte: Syftet är att belysa sjuksköterskans erfarenheter av vård i livets slutskede i hemmet. Metod: En litteraturöversikt enligt Friberg gransknings- och analysmetod. Resultat: Resultatet presenteras i två teman och fem subteman. Teman som identifierades var att skapa en vårdande relation vid vård i livets slutskede och sjuksköterskas roll vid vård i livets slutskede i hemmet. Slutsats: Det krävs att sjuksköterskan har kompetens, kunskap och engagemang för att kunna erbjuda patienten en god vård i livets slutskede. Trots att vård i hemmet blir allt vanligare inriktar sig den aktuella grundutbildningen för sjuksköterskor i stor utsträckning från att vårda på sjukhus. / Background and problem formulation: Care in the final stages of life means that the care transitions from being life-extending to being palliative. The care can last from days to months and it is important that the nurse adapts the care based on the patient's health and life situation. The nurse must offer the patient safe and evidence-based care based on the patient's current needs and wishes. Aim: The aim is to illustrate the nurse's experiences of end-of-life care at home. Method: A literature review according to Friberg's review and analysis method. Results: The results are presented in two themes and five sub-themes. Themes that were identified were to create a caring relationship in end-of-life care and the role of nurses in end-of-life care at home. Conclusion: It is required that the nurse has the competence, knowledge and commitment to be able to offer the patient good care in the final stages of life. Despite the fact that home care is becoming more common, the current basic education for nurses largely focuses on nursing in hospitals.