Yes / The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population. Methods/design This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage. Discussion This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

No / Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers—an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.

No / Communities play an increasingly significant role in their own health and social care, and evidence demonstrates the positive impact of this work on a range of health outcomes. Interest is building regarding the application of the principles of the new public health approach to those facing the end of life and their families and communities. To review the evidence relating to the impact of a new public health approach to end-of-life care, specifically as this applies to efforts to strengthen community action. Design: A systematic review employing narrative synthesis. Both meta-ethnography and the use of descriptive statistics supported analysis. Data sources: Eight databases (AMED, ASSIA, BiblioMap, CINAHL, Cochrane Reviews, EMBASE, MEDLINE and PsycINFO) were searched from the earliest record to March 2015 using set eligibility criteria. Results: Eight articles were included in the analysis. Three main themes emerged from the meta-ethnography: making a practical difference, individual learning and personal growth and developing community capacity. The quantitative findings mapped to the meta-ethnography and demonstrated that engaging communities can lead to improved outcomes for carers such as decreased fatigue or isolation, increase in size of caring networks and that wider social networks can influence factors such as place of death and involvement of palliative care services. Conclusion: Evidence exists for the impact of community engagement in end-of-life care. Impact assessment should be an integral part of future initiatives and policy makers should recognise that these approaches can influence complex issues such as carer support, community capacity, wellbeing and social isolation.

Yes / The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers. Method: The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults’ services and nursing staff. Results: Good palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required. Conclusions: Contextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector

No / The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.

Background: Critical care is a relatively young speciality with its intention to treat critical illness equally all around the world. Patients admitted to ICUs receive advanced treatments in order to save lives, however some patients will pass away during critical care, which put family members in great physical and emotional distress. It is important to support family needs and keep core principles of palliative care in mind in order for patients and family members to cope with current situation. The need for palliative care is greater than ever, but in most parts of the world it is poorly developed. Brazil struggles with several challenges regarding implementation of a palliative approach within ICU settings. Aim: the aim was to explore nurses’ experiences of palliative care, focusing on family involvement in Brazilian ICUs. Method: semi-structured interviews were analysed using content analysis. Five female nurses were included from one public and one private hospital in the city of Rio de Janeiro, with an average ICU working experience of nine years. Results: three main categories were identified describing nurses’ experiences of palliative care and family involvement: to care for a dignified death, to promote family involvement and areas for future improvement. Discussion: the results reveal that the nurses, even though lack of professional training, believe that palliative care is important for both patient and their family members at the EOL. Brazilian nurses also face several challenges in order to perform palliative care successfully within ICUs. They struggle with strict visiting policy and the perception of nurses being inferior to physicians. There is a wish for acknowledgement of the nursing profession during EOLC in Brazilian ICUs, since nurses spend most time at each patient’s bedside along with their family members.

Bakgrund: Inom neonatalvården idag är det ovanligt att barn dör, men när det sker innebär det en i många fall livslång kris för de föräldrar som drabbas. Neonatal palliativ vård omfattar en helhetssyn och fokus på hela familjen, vilket bidrar till att relationer mellan familjen och vårdpersonalen byggs upp. Det innebär också etiska dilemman och att ställas inför svåra beslut. Syfte: Syftet var att beskriva föräldrars erfarenhet av neonatal palliativ vård. Metod: En litteraturöversikt baserad på 12 kvalitativa artiklar som söktes fram i databaserna AMED, Cinahl, Medline och PsycINFO. Fribergs trestegsmodell användes för analys. Resultat: Åtta kategorier framkom: Att få möjlighet att vara nära; Att vara delaktig i att fatta beslut; Betydelsen av information; Att bli behandlad med respekt; Att lindra barnets lidande; Betydelsen av samtal och stöd; Att skapa minnen samt Sjukhusmiljöns betydelse. Slutsats: Föräldrarna har behov av att få vara delaktiga i barnets vård för att skapa minnen. De behöver information för att förstå och efterfrågar fortsatt kontakt med vårdpersonal och uppföljning efter dödsfallet. / Background: In today’s neonatal care, it is uncommon that babies die. When it happens, it is associated with a life-long crisis for the affected parents. In neonatal end-of-life care, the focus is on the entire family and on the relationships that occur between the family and the health care professionals. It is also related to the ethical questions and difficult decisions that take place in this situation. Aim: The aim was to describe parents´ experiences in neonatal end-of-life care. Method: A literature review consisting of 12 articles with a qualitative approach were made. Searches were made in the databases AMED, Cinahl, Medline and PsycINFO. Fribergs three step method for analysis was used. Results: Eight categories were found: To be able to be near; To be involved in making decisions; The importance of information; To be respected; To alleviate child suffering; The meaning of conversation and support; To create memories and The significance of the hospital environment. Conclusions: The parents have the need to be involved in the care of their dying child to create lasting memories. They need information to understand and they ask for further contact and follow-up meetings after the death of their child.

Bakgrund:Hemlöshet resulterar ofta i en signifikant påverkan såväl på livskvalité som förväntad livslängd. Samtidigt är gruppens tillgång till hälso- och sjukvård inkluderat palliativ vård, begränsad. Syfte: Att kartlägga och beskriva de barriärer och strategier som finns för personer som befinner sig i akut hemlöshet att få en god palliativ omvårdnad. Metod: Allmän litteraturstudie med elva artiklar som rekryterades via databaserna Pubmed och Academic Search Premier. Kvalitativa artiklar inkluderades och granskades utifrån en innehållsanalys. Resultat: Tre övergripande teman identifierades; samtal om döden, socialt nätverk och vårdpersonalens upplevelser samt relation till vårdpersonal. Utifrån dessa övergripande barriärer framkom flera subteman. Flera möjliga strategier finns, exempelvis ett empatiskt bemötande, personcentrerad vård, och stärkning av individens autonomitet. Slutsats:Studien visar att personer i akut hemlöshet möter flera barriärer för att få en god palliativ omvårdnad. Barriärerna kan minskas genom ökad utbildning för sjuksköterskor om sociala determinanters påverkan på hälsan och omvårdnaden, men även ett holistiskt, empatiskt personcentrerat förhållningssätt kan förbättra den palliativa omvårdnaden för akut hemlösa.Klinisk betydelse: Kunskaper från denna studie ska kunna tillämpas av sjuksköterskor i den palliativa vården men även andra vårdenheter där hemlösa befinner sig. / Background: Homelessness often results in a significant impact on both quality of life and life expectancy. At the same time, the group's access to health and medical care including palliative care is limited. Aim: The aim of the study was to map and describe the barriers and strategies that exist for people who are in acute homelessness to get a good palliative care. Method: A general literature study with eleven articles recruited via the databases Pubmed and Academic Search Premier. Qualitative articles were included and reviewed on the basis of a content analysis. Results:Three overall themes were identified; talks about death, social network and the healthcare staff's experiences as well as relation to healthcare staff. Based on these overall barriers, several subthemes emerged. Several possible strategies exist, such as empathic treatment, person-centered care, and strengthening of the individual's autonomy. Conclusion: The study shows that people in acute homelessness face several barriers to get a good palliative care. These barriers can be reduced through increased training for nurses on how social determinants affect health and nursing, but also a holistic, empathically person-centered approach can improve the palliative care for the acute homeless. Clinical significance: Knowledge from this study can be applied by nurses in palliative care, but also by other care units where homeless people are in. / <p>Röda Korsets sjuksköterskeförening stipendium 2019</p>

Bakgrund: Nästan 90 procent av alla som årligen avlider i Sverige är 65 år eller äldre och det egna hemmet är den plats många önskar att få palliativ vård i. Sjuksköterskan skall ha ett holistiskt förhållningssätt i vården av den döende patienten och yrkesansvaret innefattar att lindra lidandet, ett värdigt bemötande av patienten och personcentrerad omvårdnad.  Syfte: Att beskriva sjuksköterskans upplevelser av vård i livets slutskede för äldre patienter i hemmet Metod: En litteraturöversikt har genomförts där nio kvalitativa och en kvantitativ artikel inkluderats och som inhämtats från databaserna CINAHL Complete, Ageline och PubMed. Artiklarna kvalitetsgranskades, analyserades och kategoriserades med utgångspunkt i Fribergs  analysmetod. Resultat: Fyra teman uppkom Känslomässiga erfarenheter, Vårdrelationens betydelse, Teamarbetets betydelse och Behov av stöd och utbildning. Sjuksköterskor beskrev både positiva och negativa upplevelser av vård i livets slutskede för äldre patienter i hemmet. Sjuksköterskorna kände en meningsfullhet i den palliativa vården där de skapade en stark relation till den döende. De negativa upplevelserna grundade sig i yttre faktorer som gjorde att sjuksköterskorna kände sig maktlösa och utsatta i sin yrkesroll. Sjuksköterskorna uttryckte bristande samarbete i teamarbetet samt behov av stöd och utbildning från arbetsgivare. Diskussion: Metoddiskussionen beskriver styrkor och svagheter i litteraturöversikten. Resultatet diskuterades utifrån bakgrunden och tidigare forskning samt valda delar av Katie Erikssons teori om vårdande, lidande och begreppet hälsa. / Background: Almost 90 percent of the total amount who dies annually in Sweden is 65 or older and their own home is the place that many choose getting palliative care in. The nurse should have a holistic approach in end of life care and the professional responsibility include alleviate the suffering, a dignified treatment of the patient and person-centered care.  Aim:To describe the nurse experience of palliative care to elderly patients in their home.  Method: A literature review has been carried out in which nine qualitative and one quantitative article were included. They were extracted from the databases CINAHL complete, Ageline and PubMed. The quality of the articles follows the guidelines of Friberg’s analysis method.  Results: The analysis resulted in four themes Emotional experiences, Importance of nurse-patient relations, Importance of teamworkand Need of support and education. The nurses described both positive and negative experiences of end of life care to elderly patients in their home. The nurses felt satisfaction in end of life care where they created a strong relationship with the dying patient. The negative experiences were based on external factors that made the nurses feel powerless and vulnerable in their professional role. Discussion: The method discussion raises strengths and weaknesses in the literature review. The authors discussed the results based on the background and previous research, along with parts of Katie Eriksson’s theory of caring, suffering and the concept of health.

Bakgrund: Vård i livets slut syftar till att förebygga och lindra lidande. Idag lever människor allt längre vilket resulterar i att behovet av palliativ vård och vård i livets slut ökar. Det kan upplevas som utmanande att vårda en döende patient eftersom denna vårdform fortfarande kan vara främmande för många sjuksköterskor. Syfte: Litteraturöversiktens syfte är att sammanställa forskningsbaserad kunskap om vad som kan påverka sjuksköterskans erfarenheter av vård i livets slut för patienten på en somatisk vårdavdelning.  Metod: Studien genomfördes som en litteraturöversikt som baserades på 15 vetenskapliga artiklar, varav tolv kvalitativa och tre kvantitativa. Artiklarna söktes fram via databaserna i PubMed och CINAHL. Resultat: Huvudresultatet som identifierades i studien var kompetens, utmaningar och vårdens resurser. Otillräcklig kompetens hos sjuksköterskor framkom, likaså att mer utbildning behövdes på grund av bristande kunskapen hos sjuksköterskor på somatiska vårdavdelningar när det gällde vård i livets slut. Sjuksköterskor som fått utbildning inom området upplevde det lättare och kände sig tryggare med att vårda döende patienter. Det framkom behov av att utveckla detta område i den grundläggande sjuksköterskeutbildningen. Kommunikation, som till exempel att bygga förtroende och sjuksköterskans förmåga att uttrycka sig, var viktiga faktorer. Sjuksköterskor tyckte att det var utmanande att få ett förtroende från patientens närstående.  Slutsats: Sjuksköterskans kunskap har i resultatet visats vara viktigt och behovet av utbildning och fortbildning har varit tydligt framträdande. Med den sjuksköterskebrist som råder behövs fler sjuksköterskor med rätt kunskap. Utbildning och praktiska erfarenheter kan bidra till att sjuksköterskor känner sig trygga i rollen att vårda döende patienter samt att kommunicera med dem och deras närstående. / Background: Palliative care and end-of-life care aims to prevent and relief suffering. Today people live longer which shows an increased care of dying patients. It can be expressed as challenging to care for a dying patient since this form of care still can be foreign to many nurses. Aim: The purpose of this literature review was to compile research-based knowledge of things that can affect the nurse's experiences of care in the end of life for the patient in a somatic hospital setting. Method: The study was conducted as a literature review which was based on twelve qualitative and three quantitative studies. The results were based on scientific articles that were found in databases such as PubMed and Cinahl.  Results: The main result that was identified in the study was competence, challenges and resources of care. Nurses had a lack of knowledge when caring for dying patients in a somatic hospital setting. The competence was inadequate and it appeared that there was a need of more education and the basic nursing education needs to be further developed in end of life care. Nurses who received education in end of life care were more safe caring for dying patients. Communication, for example building trust and the nurse’s ability to express themselves, were important factors. Nurses thought it was challenging to earn trust from the patient's relatives. Conclusion: The results have shown that the nurse's knowledge is important and the need for education and training has been clearly prominent. Today there is a lack of nurses and there is a need for more nurses with the right knowledge. Education and practical experience can help the nurses feeling safer in the role of caring for dying patients and communicating with them and their relatives.