Family caregivers encounter immense negative consequences including decreased quality of life and increased rates of morbidity and mortality that stem from physical burdens, emotional distress, depression, social isolation, and loss of financial security. Although communication is an important aspect of caregiving, communication tasks are reportedly difficult for end-of-life family caregivers. The goal of this study was to explore the variety of communication stressors experienced by end-of-life family caregivers to gain insight into the communication tasks caregivers perceive as most difficult and the reasons why. Qualitative data was achieved through in-depth, face-to-face interviews with 40 caregivers currently providing care for a family member diagnosed with Alzheimer’s disease and related dementias (n=20; ADRD) and Glioblastoma (n=20; brain tumor [GBM]). A grounded theory approach was employed to gain insight into end-of-life family caregiver communication experiences. The results revealed that communication is perceived as a burden for end-of-life family caregivers. Not only does communication burden exist, end-of-life family caregivers experience immense tension and stress regarding a variety of relational contexts when communicating with the care recipient, others (family, friends), and clinicians. The results further revealed that communication burden stems from the caregiver’s attempt to negotiate between two opposing extremes: a desire to protect the patient and others versus a need to protect oneself. Thus, internal tension occurs when end-of-life family caregivers contemplate whether and how to engage in difficult conversations, and then again when following through. The presence of these contradictory tensions induced the emergence of barriers and therefore communication burden within various aspects of the end-of-life caregiver experience. Added insight into communication burden was achieved through a supplementary scale development study in a sample of ADRD and oncology end-of-life caregivers (N=263), which revealed communication burden as significantly associated with caregiver burden and quality of life. Implications for the advancement of interpersonal and health communication theory as well as practical tailored interventions targeting end-of-life family caregivers are discussed.

Sammanfattning/Abstract Bakgrund: Många patienter väljer i dag att vårdas hemma under sin sista tid i livet istället för som tidigare på sjukhus eller ett boende. Den palliativa hemsjukvården blir därför alltmer utbredd vilket samtidigt innebär att allt större krav ställs på de närstående som då ofta intar en vårdande roll.  Syfte: Syftet är att beskriva hur närstående upplever sin vårdande roll i den palliativa hemsjukvården. Metod: En litteraturstudie baserad på tio resultatartiklar som består av både kvalitativa och kvantitativa studier där vi kom fram till tre teman som handlade om den närståendes upplevelser av den vårdande rollen, närståendes vårdande roll och den sjuke och närståendes vårdande  roll och sjuksköterskan.  Resultat: Många närstående fann både fördelar och nackdelar med den vårdande rollen och att den innebär en stor omställning. Många närstående kände sig mer eller mindre tvingade att ta över den vårdande rollen.Tillräcklig information och en god kommunikation ansågs av de närstående som en mycket viktig faktor.   Diskussion: Att vårda en svårt sjuk anhörig är ofta en belastning. Detta kräver att vårdpersonalen är medvetna om de närståendes svåra situation och upplevelsen av denna. Det är även viktigt att uppmärksamma närståendes behov av information och att ha en bra kommunikation för att vi som sjuksköterskor ska kunna stödja de närstående i deras vårdande roll. Nyckelord: Anhörig vårdare, vårdande roll, palliativ vård, döende patienter, vård i livets slut Keywords: Family caregivers, caring role, palliative care, terminally ill, end of life care

Syfte: Syftet med studien är att studera i hur stor omfattning patienter är omgivna av andra i dödsögonblicket i palliativ vård och undersöka om det finns formulerade omvårdnadsmål i patienters IVP gällande vården i livets slutskede. Metod: Studien är kvantitativ retrospektiv med deskriptiv och analytisk design. I studien ingår samtliga cancerpatienter (n= 316), som vårdats och dött på en vårdavdelning och ASIH (avancerad sjukvård i hemmet) i Stockholm samt registrerats i Svenska palliativregistret (n=295). Resultat: Studien visade att i åldersgrupperna 75-84 år och 85 eller äldre var det fler som dog utan någon närvarande vid dödsögonblicket än i övriga åldersgrupper. Patienter dör utan att någon närvarande vid dödsögonblicket i ungefär lika stor omfattning i urvalet som på övriga palliativa enheter i Sverige. Resultatet visade att 62 % av de granskade journalerna hade omvårdnadsmål dokumenterade i IVP. Konklusion: Studien visar att närvaron vid dödsögonblicket sjunker när åldern stiger och att patienter dör utan någon närvarande vid dödsögonblicket i samma omfattning i urvalet som på övriga palliativa enheter i Sverige. Studien klarlägger även bristen på omvårdnadsmål i patienters IVP, vilket belyser ett förbättringsområde för att säkerställa kvaliteten på vården av patienter i livets slutskede. / Aims: The aim was to study the extent to which patients were surrounded by others at the time of death in palliative care and examine whether there were individual care plans, (IVP) in the patients nursing documentation regarding End-of-Life Care. Method: The study is quantitative retrospective with descriptive and analytical design. And includes all cancer patients (n = 316) who received care and died on a palliative care unit ward and ASIH (advanced medical care at home) in Stockholm and was registered in the Swedish palliative registry (n = 295). Results: In the age groups 75-84 years and 85 years or older, patients are more likely to die without someone present than in the other age groups. Patients are dying without anyone present in the same extent as in other palliative care units around Sweden. Only 62% of the sample had nursing goals documented in the patients IVP. Conclusion: The study illustrates that patients are surrounded by others in the same extent as in other palliative care units around Sweden. The study clarifies the lack of nursing goals in patients IVP, which highlights an area for improvement to ensure the quality in the End-of-Life care.

BACKGROUND: Several people die every year. The numbers of deceased in Sweden were 91449 in 2008. This often brings bereavement for the relatives and in hospital with end-of-life care it can be important for the health professionals to support and also take care of the relatives. AIM: The aim of this study is to illuminate relatives’ experiences of the caring situation with end-of life-care when a close relative is dying METHOD: Literature review. A number of thirteen scientific articles were analyzed. These were previous research of both qualitative and quantitative methods. RESULT: The result shows that many relatives are in need of a good treatment from health professionals, where the treatment includes components like providing support, providing information, creating a good relationship and having a good communication. A trust in health professionals was important for the relatives because it brought knowledge that good care was provided to the patient. It also indicates that participation was important in end-of-life care. There was a safety in having someone at the relative´s side who could offer aid. A quiet and calm environment was positive. DISCUSSION: The nurse´s experience and knowledge about bereavement is an important part of the care providing to the relatives. / BAKGRUND: Varje år dör många människor och i Sverige dog 91 449 människor år 2008. Detta medför sorg för många närstående och medför även att vårdpersonalen har en stor del i att ge stöd och ta hand om de närstående samtidigt som de tar hand om vårdtagaren. SYFTE: Syftet är att belysa närståendes upplevelser av omvårdnadssituationen kring vården vid livets slut av en nära anhörig. METOD: Litteraturstudie. Tretton vetenskapliga artiklar analyserades. Dessa var tidigare forskning av både kvalitativa och kvantitativa studier. RESULTAT: Resultatet visar att många närstående är i behov av ett gott bemötande från vårdpersonal, där det med bemötande ingår komponenter som att ge stöd, att ge information, att skapa en god relation och att ha en god kommunikation. Ett förtroende för vårdpersonalen var viktigt för att närstående skulle veta att en god omvårdnad gavs till vårdtagaren. Det visar även på att delaktighet var betydelsefullt i vården vid livets slut. Det var en trygghet att ha någon vid sin sida som kunde erbjuda stöd. En lugn och behaglig miljö med hemtrevlig inredning var positivt. DISKUSSION: Sjuksköterskans erfarenhet och kunskap om sorg har en betydelse i hur närstående tas om hand.

Syfte: Att beskriva sjuksköterskans roll och upplevelser vid vård i livets slutskede. Syftet var även att värdera vilken betydelse datainsamlingsmetoden har för de inkluderade artiklarna. Metod: Beskrivande litteraturstudie baserad på 13 vetenskapliga artiklar som söktes i databaserna Cinahl och PubMed via Högskolan i Gävle. En metodologisk granskning av de ingående artiklarnas datainsamlingsmetod genomfördes. Resultat: Vård i livets slutskede krävde teamarbete där både vårdpersonal, patient och närstående ingår. Sjuksköterskans roll innefattade ett professionellt förhållningssätt där patient och närstående inkluderades som en helhet. Resultatet visade betydelsen av sjuksköterskans närvaro och lyhördhet i omvårdnaden men beskrev även vikten av att bevara en balans mellan närvaro och distans. Sjuksköterskans upplevelser innefattade både positiva och negativa upplevelser, vilket påverkade sjuksköterskan både i privat- och arbetslivet. Tidsbrist och otillräcklig kunskap upplevdes som hinder för att uppnå god vård. Vård i livets slutskede upplevdes även som unikt och ett privilegium som gav sjuksköterskorna en personlig utveckling. Semistrukturerade intervjuer förekom i 6 artiklar och resterande 7 artiklar använde ostrukturerade intervjuer. Slutsats: Sjuksköterskans roll innefattar flera element och för att utöva god omvårdnad vid vård i livets slutskede krävs ett professionellt förhållningssätt. Vård i livets slutskede ger sjuksköterskan både positiva och negativa upplevelser. Vald datainsamlingsmetod i de inkluderade artiklarna ger djupare förståelse för det fenomen som studeras. / Aim: To describe the nurse's role and experiences of end-of-life care.The aim was also to value which significance data collection method have for the included articles. Method: Descriptive study based on 13 scientific articles which were searched in the databases Cinahl and PubMed through the University of Gävle. Methodological examinations of the included articles data collection method were performed. Results: End-of-life care required teamwork where healthcare professionals, patients and families are included. Nurse's role comprised a professional approach in which the dying patient and relatives were included as a whole. The results showed the importance of the nurse's presence and responsiveness of care but also described the importance of maintaining a balance between presence and distance. Nurses' experiences included both positive and negative experiences, which affected the nurse both in private and professional life. Lack of time and knowledge were experienced by nurses as barriers to achieve good care. End-of-life care was perceived also as unique and a privilege that gave nurses a personal development. Semistructured interviews occurred in 6 articles and the remaining 7 articles used unstructured interviews. Conclusion: Nurses role includes several elements and to practice good care in end-of-life care requires a professional approach. End-of-life care give nurses both positive and negative experiences. Selected data collection method in the included articles provides a deeper understanding of the phenomenon being studied.

No description available.

Cerebral vascular accidents (CVAs) rank as the third leading cause of death in Canada with more than 50,000 of these events occurring annually. The evidence base from which to provide end-of- life care to patients dying from a CVA is currently limited, and there is a dearth of research examining the experiences of nurses charged with the responsibility of caring for these patients. In order to begin to address this gap in the literature, a qualitative study, using van Manen’s interpretive phenomenology was conducted to examine and describe the lived experiences of nurses working on an acute neurosciences unit in a tertiary hospital. Nine nurses were interviewed initially, and two nurses participated in follow-up interviews to confirm the interpretation of the data. This manuscript will discuss the essence of nurses’ lived experience in caring for these patients, as well as implications for education, practice, and future research.

Introduction There is a need in palliative care for development of structured methods to assess quality and support improvement. This need is present both within and outside specialised palliative care. Honest information from physicians is regarded as an important part of palliative care. Information about the transition to end-of-life care (ITEOL), conveyed by physicians to patients, has also been described as a ‘breakpoint conversation’. Quality registers enable monitoring and improvement of quality of care, and clinical research. The Swedish Register of Palliative Care (SRPC) is a Swedish national quality register that collects data from hospitals, hospices, nursing homes and home care, with an end-of-life questionnaire (ELQ) about palliative care content focusing on the last week of life. Aims Study I – The aim was to examine the validity of the ELQ from the SRPC. Study II – The aim was to examine whether participation in the SRPC increases the quality of palliative care over a three-year period regarding eight items in the ELQ. Study III – The aim was to examine whether an educational intervention for physicians and nurses in nursing homes and hospitals increases the proportion of patients who receive ITEOL. Study IV – The aim was to describe how patients with cancer perceive the information they receive from physicians during palliative chemotherapy. Methods Study I – Data from 100 medical records and data from the paper versions of the ELQ filled in at a specialised palliative unit were compared with data reported to the SRPC. Study II – Data from eight items in the ELQ reported to the SRPC from all healthcare units that had reported patients continuously during a three-year period were compared year-by-year with logistic regression. Study III – Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. Four hospitals and four municipalities were assigned matched controls. The proportion of patients who received ITEOL before and after the intervention was measured with the ELQ. The effect of the intervention was analysed with a multivariable logistic regression model. Study IV – Fifteen semi-structured interviews with patients with incurable cancer were conducted, transcribed verbatim and analysed with qualitative content analysis. Results Study I – The questions in the ELQ showed a congruity of 22% to 100% when comparing data from medical records with data reported to the SRPC. Eight questions fell below 80%. The paper versions filled in at the unit and the data reported to the SRPC showed a congruity of between 91% and 100%. Study II – The prevalence of six symptoms decreased. The prescription of PRN (pro re nata – ‘as needed’) medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient’s next of kin was more often offered a follow-up appointment after the patient’s death. There was no change in the proportion of patients or next of kin who received ITEOL. Study III – The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a six-month period before the intervention) to 42.0% (during a six-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in the multivariable model. Study IV – Three categories were disclosed during the analytical process: ‘living with a death sentence’, ‘depending on chemotherapy’, and ‘living with uncertainty’. Conclusions A national quality register has the potential of contributing to quality improvement in palliative care. Study I showed varied validity in the ELQ, implying a need to modify the questionnaire. Study II showed that participation in the SRPC was covariant with quality improvements in end-of-life care over time. Study III showed that more patients received ITEOL after an educative half-day intervention directed to physicians and nurses. Study IV showed that patients undergoing palliative chemotherapy perceived that their disease was incurable and deadly, and that conditions for future treatment and survival were uncertain.

Withdrawal of life support therapy involves controlled removal of life support modalities including artificial respiration and circulation with intent to provide a comfortable death. Withdrawal of life support therapy is necessary prior to procedures such as organ donation after cardio-circulatory death, but remains poorly explored in current literature. To enhance the current evidence, we conducted a thorough structured review, an observational study, and a qualitative comparison of components comprising withdrawal of life support therapy in both donor and non-donor patient groups. At all stages, we considered how results impacted donation after cardio-circulatory death. Withdrawal of life support therapy processes vary between countries, hospitals, practitioners, and patients. Variability in practice impacts care and outcomes for both donor and non-donor patients. Improved definitions and consensus about the process of withdrawal of life support therapy may improve patient care, success of organ donation after cardio-circulatory death, and uptake of donation protocols.

Cerebral vascular accidents (CVAs) rank as the third leading cause of death in Canada with more than 50,000 of these events occurring annually. The evidence base from which to provide end-of- life care to patients dying from a CVA is currently limited, and there is a dearth of research examining the experiences of nurses charged with the responsibility of caring for these patients. In order to begin to address this gap in the literature, a qualitative study, using van Manen’s interpretive phenomenology was conducted to examine and describe the lived experiences of nurses working on an acute neurosciences unit in a tertiary hospital. Nine nurses were interviewed initially, and two nurses participated in follow-up interviews to confirm the interpretation of the data. This manuscript will discuss the essence of nurses’ lived experience in caring for these patients, as well as implications for education, practice, and future research.