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BACKGROUND: Life-sustaining treatment (LST) orders are important communication tools used to ensure preference-concordant care at the end of life. Recent studies reveal concerning rates of discordance between current preferences and documented LST orders, especially in nursing facilities without POLST. Reasons for discordance in facilities using POLST have been explored, however the majority of nursing facilities in the United States do not yet use the POLST form. DESIGN: Qualitative descriptive study using constant comparative analysis. SETTING: Nursing facilities in Indiana (n = 6) not using POLST. PARTICIPANTS: Residents (n = 15) and surrogate decision-makers of residents without decisional capacity (n = 15) with discordance between current preferences and documented LST orders. MEASUREMENTS: Do not resuscitate, do not hospitalize (DNH), and do not intubate (DNI) orders were extracted from medical charts. Current preferences were elicited using the Respecting Choices Advanced Steps model. A semi-structured interview guide was used to explore reasons for discordance between current preferences and LST orders. RESULTS: Reasons for discordance included: (1) inadequate information about the range of available LST options, what each involves, and how to formally communicate preferences; (2) no previous discussion with facility staff; (3) no documentation of previously expressed preferences; and (4) family involvement. CONCLUSION: Reasons for discordance between expressed preferences and LST orders suggest that in facilities without a uniform and systematic LST order documentation strategy like POLST, these conversations may not occur and/or be documented. Staff should be aware that residents and surrogates may have preferences about LSTs that require strategic solicitation and documentation.

Background: Education in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons. Despite awareness of the importance of palliative care education for nurses, there is a lack of knowledge on how to effectively convey this knowledge to students. The aim of the present study was to explore how teaching to prepare undergraduate nursing students for palliative care practice is conducted in Sweden. Methods: Educators from 22 Bachelor of Science nursing programmes in Sweden were interviewed about how they conducted palliative care education, with a focus on teaching situations that have been successful or less successful. The interviews were transcribed and analysed using qualitative inductive content analysis. Results: Educators described that they play a crucial role in preparing undergraduate nursing students to face death and dying and to care for persons at the end of life. In the main theme, “Transforming person-centred palliative care into student-centred education”, educators described how they incorporated the person-centred palliative approach into their teaching. Educators used a dynamic style of teaching where they let the students’ stories form the basis in a co-constructed learning process. The educators trusted the students to be active partners in their own learning but at the same time they were prepared to use their expert knowledge and guide the students when necessary. Discussion and reflection in small groups was described as being essential for the students to achieve a deeper understanding of palliative care and to process personal emotions related to encountering dying and grieving individuals. Conclusions: Th

Background There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. Methods The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. Results Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. Conclusion End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

ImportanceThere is substantial institutional variability in the intensity of end-of-life care that is not explained by patient preferences. Hospital culture and institutional structures (eg, policies, practices, protocols, resources) might contribute to potentially nonbeneficial high-intensity life-sustaining treatments near the end of life.ObjectiveTo understand the role of hospital culture in the everyday dynamics of high-intensity end-of-life care.Design, setting, and participantsThis comparative ethnographic study was conducted at 3 academic hospitals in California and Washington that differed in end-of-life care intensity based on measures in the Dartmouth Atlas and included hospital-based clinicians, administrators, and leaders. Data were deductively and inductively analyzed using thematic analysis through an iterative coding process.Main outcome and measureInstitution-specific policies, practices, protocols, and resources and their role in the everyday dynamics of potentially nonbeneficial, high-intensity life-sustaining treatments.ResultsA total of 113 semistructured, in-depth interviews (66 women [58.4%]; 23 [20.4%] Asian, 1 [0.9%] Black, 5 [4.4%] Hispanic, 7 [6.2%] multiracial, and 70 [61.9%] White individuals) were conducted with inpatient-based clinicians and administrators between December 2018 and June 2022. Respondents at all hospitals described default tendencies to provide high-intensity treatments that they believed were universal in US hospitals. They also reported that proactive, concerted efforts among multiple care teams were required to deescalate high-intensity treatments. Efforts to deescalate were vulnerable to being undermined at multiple points during a patient's care trajectory by any individual or entity. Respondents described institution-specific policies, practices, protocols, and resources that engendered broadly held understandings of the importance of deescalating nonbeneficial life-sustaining treatments. Respondents at different h

BackgroundFactors that influence prostate cancer treatment decisions are complex, multifaceted, and personal, and may vary by race/ethnicity. Although research has been published to quantify factors involved in decision-making, these studies have been limited to primarily white, and to a lesser extent, Black patients, and quantitative studies are limited for discerning the cultural and contextual processes that shape decision-making.MethodsWe conducted 43 semi-structured interviews with a racially and ethnically diverse sample of patients diagnosed with low- and very-low risk prostate cancer who had undergone treatment for their prostate cancer. Interviews were transcribed, independently coded, and analyzed to identify themes salient for decision-making, with attention to sociocultural differences.ResultsWe found racial and ethnic differences in three areas. First, we found differences in how socialized masculinity influenced patient's feelings about different treatment options. Second, we found that for some men, religion and spirituality alleviated anxiety associated with the active surveillance protocol. Finally, for racially and ethnically minoritized patients, we found descriptions of how historic and social experiences within the healthcare system influenced decision-making.ConclusionsOur study adds to the current literature by expounding on racial and ethnic differences in the multidimensional, nuanced factors related to decision-making. Our findings suggest that factors associated with prostate cancer decision-making can manifest differently across racial and ethnic groups, and provide some guidance for future research.

BackgroundInitially developed in the intensive care unit (ICU) at St. Joseph's Healthcare Hamilton (SJHH) the 3 Wishes Project (3WP) provides personalized, compassionate care to dying patients and their families. The objective of this study was to develop and evaluate 3WP expansion strategies for patients cared for on General Internal Medicine (GIM) wards in our hospital.MethodsFrom January 2020-November 2021, we developed a phased, multicomponent approach for program expansion. We enrolled patients on the GIM wards who had a high probability of dying in hospital, then elicited, implemented, and documented wishes for them or their families. Data were analyzed descriptively.ResultsFrom March 2020 to November 2020, we implemented staff education and engagement activities, created an Expansion Coordinator position, held strategic consultations, and offered enabling resources. From March 2020 to November 2021, we enrolled 62 patients and elicited 281 wishes (median [1st, 3rd quartiles] 4 [4, 5] wishes/patient). The most common wish categories were personalizing the environment (67 wishes, 24%), rituals and spiritual support (42 wishes, 15%), and facilitating connections (39 wishes, 14%). The median [1st, 3rd] cost/patient was $0 [0, $10.00] (range $0 to $86); 91% of wishes incurred no cost to the program.ConclusionsThe formal expansion of the 3WP on GIM wards has been successful despite COVID-19 pandemic disruptions. While there is still work ahead, these data suggest that implementing the 3WP on the GIM wards is feasible and affordable. Increased engagement of the clinical team during the pandemic suggests that it is positively received.

BACKGROUND: Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement. AIM: To develop strategies to improve the design and conduct of research with family carers. DESIGN: Expert elicitation study using an adapted version of the 'Identify, Discuss, Estimate and Aggregate' elicitation protocol, supplemented with strategies from peer-reviewed literature. SETTING/PARTICIPANTS: Nine members of the management committee of the European Association for Palliative Care's Reference group on family carer research, comprising international senior research academics in family caregiving. RESULTS: A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals. CONCLUSIONS: The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.

BackgroundThe end-of-life (EOL) experience in the intensive care unit (ICU) is emotionally challenging, and there are opportunities for improvement. The 3 Wishes Program (3WP) promotes the dignity of dying patients and their families by eliciting and implementing wishes at the EOL.AimTo assess whether the 3WP is associated with improved ratings of EOL care.Program descriptionIn the 3WP, clinicians elicit and fulfill simple wishes for dying patients and their families.Setting2-hospital academic healthcare system.ParticipantsDying patients in the ICU and their families.Program evaluationA modified Bereaved Family Survey (BFS), a validated tool for measuring EOL care quality, was completed by families of ICU decedents approximately 3 months after death. We compared patients whose care involved the 3WP to those who did not using three BFS-derived measures: Respectful Care and Communication (5 questions), Emotional and Spiritual Support (3 questions), and the BFS-Performance Measure (BFS-PM, a single-item global measure of care).ResultsOf 314 completed surveys, 117 were for patients whose care included the 3WP. Bereaved families of 3WP patients rated the Emotional and Spiritual Support factor significantly higher (7.5 vs. 6.0, p = 0.003, adjusted p = 0.001) than those who did not receive the 3WP. The Respectful Care and Communication factor and BFS-PM were no different between groups.DiscussionThe 3WP is a low-cost intervention that may be a feasible strategy for improving the EOL experience.

BACKGROUND: While advanced care planning (ACP) is recommended in dementia and cancer care, there are unique challenges in ACP for individuals with dementia, such as the insidious onset and progression of cognitive impairment, potentially leading to high-intensity care at the end of life (EOL) for this population. OBJECTIVE: To compare ACP completion and receipt of high-intensity care at the EOL between decedents with dementia versus cancer. DESIGN: Retrospective longitudinal cohort study. PARTICIPANTS: Participants of the U.S. Health and Retirement Study who died between 2000 and 2014 with dementia (n = 2099) and cancer (n = 1137). MAIN MEASURES: Completion of three types of ACP (living will, durable power of attorney for healthcare [DPOAH], discussions of preferences for EOL care) and three measures of EOL care intensity (in-hospital death, intensive care unit [ICU] care in the last 2 years of life, life support use in the last 2 years of life). KEY RESULTS: Use of living will was lower in dementia than in cancer (adjusted proportion, 49.9% vs. 56.9%; difference, - 7.0 percentage points [pp, 95% CI, - 13.3 to - 0.7]; p = 0.03). Use of DPOAH was similar between the two groups, but a lower proportion of decedents with dementia had discussed preferences compared to decedents with cancer (53.0% vs. 68.1%; - 15.1 pp [95% CI, - 19.3 to - 10.9]; p < 0.001). In-hospital death was higher in dementia than in cancer (29.5% vs. 19.8%; + 9.7 pp [95% CI, + 5.9 to + 13.5]; p < 0.001), although use of ICU care was lower (20.9% vs. 26.1%; - 5.2 pp [95% CI, - 9.8 to - 0.7]; p = 0.03). Use of life support was similar between the two groups. CONCLUSIONS: Individuals with dementia complete ACP less frequently and might be receiving higher-intensity EOL care than those with cancer. Interventions targeting individuals with dementia may be necessary to further improve EOL care for this population.

Palliative care aims to comprehensively alleviate the suffering of patients with chronic, degenerative and terminal diseases, and thus improve their quality of life by including physical, psychosocial, and spiritual aspects in the care process. In Colombia, the provision of palliative care services is regulated by Law 1733 of 2014, but access to them is limited since the health care centers where these services are provided are concentrated in the large capitals of the country. Furthermore, the general population is unaware of the existence of this type of care. The fear of contagion during the COVID-19 pandemic created additional barriers, hindering even more the access to palliative care. For example, the access of health personnel in charge of these services to patients' homes was restricted and it was observed that people avoided attending their appointments at health centers. Similarly, isolation and social distancing measures further worsened the psychosocial suffering of both inpatients and their families, as the support and presence of their loved ones was extremely limited during the end-of-life period, making, in turn, the grieving process more difficult when these patients passed away. Bearing this in mind, the objectives of this reflection were to explore the current situation of palliative care services in Colombia and analyze the impact that the COVID-19 pandemic has had on their provision at home., Los cuidados paliativos buscan aliviar de manera integral el sufrimiento de los pacientes con enfermedades crónicas, degenerativas y terminales, y, de esta forma, mejorar su calidad de vida al incluir aspectos físicos, psicosociales y espirituales en la atención. En Colombia, la prestación de los servicios de cuidados paliativos está regulada por la Ley 1733 de 2014; sin embargo, el acceso a los mismos es limitado, ya que los centros de atención donde se prestan estos servicios se concentran en las capitales departamentales; además, la población general desconoce la existencia de este tipo de atención. El temor al contagio durante la pandemia por COVID-19 ha creado barreras adicionales que dificultan aún más el acceso a los cuidados paliativos; por ejemplo, se ha restringido el acceso del personal de salud encargado de estos servicios a los domicilios de los pacientes y se ha evidenciado que las personas evitan asistir a sus consultas a los centros de salud. De igual forma, las medidas de aislamiento y distanciamiento social han empeorado aún más el sufrimiento psicosocial de los pacientes hospitalizados, así como el de sus familias, ya que el apoyo y la presencia de los seres queridos se han limitado seriamente durante el periodo de fin de la vida, lo que a su vez ha hecho más difícil el proceso de duelo cuando estos pacientes fallecen. Con esto en mente, los objetivos de la presente reflexión fueron explorar la situación actual de los servicios de cuidados paliativos en Colombia y analizar el impacto que ha tenido la pandemia por COVID-19 en la prestación domiciliaria de este tipo de cuidados.

OBJECTIVES: The aim of this study was to discuss end-of-life care in the context of Rawls' and Daniels' philosophy of justice. The study is based on an empirical survey of Swedish physicians who were asked whether they would want the option of physician-assisted suicide (PAS) for themselves (hereafter called own preferences), what are their attitudes towards PAS in general and whether they were prepared to prescribe PAS drugs to eligible patients. The question is to what extent the physicians' answers are impartial and consistent in a Rawlsian sense. METHODS: The underlying indicator was the physicians' own preferences. Kappa score inter-rater agreement was measured between that response and that same physician's general attitude towards allowing PAS and preparedness to prescribe PAS drugs. The coherence of provided comments and arguments were analysed using content analysis. RESULTS: Palliative care physicians are the least willing to offer PAS, and surgeons and psychiatrist the most willing. There is a discrepancy between physicians' general attitudes about allowing PAS, their own wishes to be offered PAS at the end of life and the concrete action of prescribing PAS drugs. Arguments given for not prescribing PAS by those in favour of PAS are seemingly but not truly inconsistent. CONCLUSIONS: Those supporting PAS provided impartial and consistent arguments for their stances in a Rawlsian sense, while those against PAS provided partial arguments. Two specialties, psychiatrists and palliative care physicians, were coherent in their reasoning about PAS for themselves and their willingness to prescribe the needed drugs.

Bakgrund: Vård i livets slutskede är den senare fasen i det palliativa vårdskedet och bygger på en holistisk människosyn. Palliativa vårdens värdegrund beskrivs med fyra ord, närhet, helhet, kunskap och empati. Vård i livets slutskede syftar till att ge patient och närstående så god livskvalité som möjligt och lindra deras lidande. Syfte: Syftet var att belysa hur närstående till patienter i livets slutskede upplever vården på sjukhus. Metod: En allmän litteraturöversikt med kvalitativ och kvantitativ ansats baserad på tio vetenskapliga artiklar vilkas resultat har analyserats utifrån Fribergs modell. Resultat: Litteraturöversiktens resultat sammanfattades i tre huvudteman: kommunikationens betydelse för vårdkvaliteten, miljöns inverkan på vårdrelationen och närståendestöd som insats i sorgeprocessen. Sammanfattning: Närstående i studierna upplevde brister i vården beträffande kommunikation och information, stöd och vårdmiljö. Bristerna medförde onödigt lidande och försämrad livskvalitet. Närstående hade en önskan om tydlig och lättförståelig kommunikation från vårdpersonal, emotionell bekräftelse och förståelse i sin sorgeprocess samt en önskan om delaktighet i vårdprocessen., Background: End of life care, which is the last phase in palliative care, is based on a holistic view of the human being and is described on the basis of palliative care's values in four words; closeness, wholeness, knowledge and empathy. End of life care aims to provide the patient and relatives with as good a quality of life as possible and alleviate their suffering. Aim: To evaluate relatives' experience of end of life care in a hospital.Method:A general literature review with a qualitative and quantitative approach based on ten scientific articles has been performed. The results of the scientific articles have been analyzed using Friberg's model. Results: The results of the literature review were shown in three main themes: the importance of communication for the quality of care, the impact of the environment on the care relationship and related party support as an input in the grief process. Summary: Relatives in the studies experienced shortcomings in care regarding communication and information, support and care environment. The shortcomings led to unnecessary suffering and deteriorating quality of life. Relatives had a desire for clear and easy to understand communication from care staff, emotional confirmation and understanding in their grieving process and a desire for participation in the care process.

Bakgrund: Palliativ vård definieras som den vård som ges i slutskedet av patientens liv. Målet med den palliativa vården är att lindra lidande och främja välbefinnande. Sjuksköterskor inom palliativ vård har ett stort ansvar gentemot närstående men specifikt mot patienten för att eftersträva ett värdigt liv för personen i livets slut. Syfte: Syftet var att beskriva sjuksköterskors erfarenheter av att vårda patienter i livets slutskede inom slutenvården. Metod: En allmän litteraturöversikt genomfördes. Sju kvalitativa, två kvantitativa samt en mixad metod inkluderades. Resultat: Resultatet delades in i tre huvudteman, brist på kunskap eller kompetens, känslomässiga reaktioner och vikten av stöd och samarbete. Sammanfattning: Sjuksköterskor som arbetar inom den palliativa vården är i behov av kontinuerlig utbildning, få möjligheten att lära sig kommunikationsstrategier samt ha en god samverkan i förhållande till olika professioner. Sjuksköterskor behöver ge patienten en säker och personcentrerad vård in i livet slutskede., Background: Palliative care is defined as the care provided in the final stages of the patient's life. The goal of palliative care is to alleviate suffering and promote health. Nurses in palliative care have a responsibility towards patients and relatives, especially towards the patient so they can live a life with dignity into the last time of life. Aim: The aim is to describe nurses experience for patients at the end of life withinin patients care. Method: A literature review was conducted and seven qualitative, two quantitative articles and one mixed method were included. Results: The results were divided into three themes, lack of knowledge or competence, emotional reactions, and the importance of support and cooperations. Summary: Nurses who work with palliative care need continuous training, have the opportunity to learn communications strategies and to have a good collaboration in relation to different professions. Nurses need to provide the patient with safe and individual care into final stages of life.

OBJECTIVES: The aim of this study was to discuss end-of-life care in the context of Rawls' and Daniels' philosophy of justice. The study is based on an empirical survey of Swedish physicians who were asked whether they would want the option of physician-assisted suicide (PAS) for themselves (hereafter called own preferences), what are their attitudes towards PAS in general and whether they were prepared to prescribe PAS drugs to eligible patients. The question is to what extent the physicians' answers are impartial and consistent in a Rawlsian sense. METHODS: The underlying indicator was the physicians' own preferences. Kappa score inter-rater agreement was measured between that response and that same physician's general attitude towards allowing PAS and preparedness to prescribe PAS drugs. The coherence of provided comments and arguments were analysed using content analysis. RESULTS: Palliative care physicians are the least willing to offer PAS, and surgeons and psychiatrist the most willing. There is a discrepancy between physicians' general attitudes about allowing PAS, their own wishes to be offered PAS at the end of life and the concrete action of prescribing PAS drugs. Arguments given for not prescribing PAS by those in favour of PAS are seemingly but not truly inconsistent. CONCLUSIONS: Those supporting PAS provided impartial and consistent arguments for their stances in a Rawlsian sense, while those against PAS provided partial arguments. Two specialties, psychiatrists and palliative care physicians, were coherent in their reasoning about PAS for themselves and their willingness to prescribe the needed drugs.

Bakgrund: Vård i livets slutskede är den senare fasen i det palliativa vårdskedet och bygger på en holistisk människosyn. Palliativa vårdens värdegrund beskrivs med fyra ord, närhet, helhet, kunskap och empati. Vård i livets slutskede syftar till att ge patient och närstående så god livskvalité som möjligt och lindra deras lidande. Syfte: Syftet var att belysa hur närstående till patienter i livets slutskede upplever vården på sjukhus. Metod: En allmän litteraturöversikt med kvalitativ och kvantitativ ansats baserad på tio vetenskapliga artiklar vilkas resultat har analyserats utifrån Fribergs modell. Resultat: Litteraturöversiktens resultat sammanfattades i tre huvudteman: kommunikationens betydelse för vårdkvaliteten, miljöns inverkan på vårdrelationen och närståendestöd som insats i sorgeprocessen. Sammanfattning: Närstående i studierna upplevde brister i vården beträffande kommunikation och information, stöd och vårdmiljö. Bristerna medförde onödigt lidande och försämrad livskvalitet. Närstående hade en önskan om tydlig och lättförståelig kommunikation från vårdpersonal, emotionell bekräftelse och förståelse i sin sorgeprocess samt en önskan om delaktighet i vårdprocessen., Background: End of life care, which is the last phase in palliative care, is based on a holistic view of the human being and is described on the basis of palliative care's values in four words; closeness, wholeness, knowledge and empathy. End of life care aims to provide the patient and relatives with as good a quality of life as possible and alleviate their suffering. Aim: To evaluate relatives' experience of end of life care in a hospital.Method:A general literature review with a qualitative and quantitative approach based on ten scientific articles has been performed. The results of the scientific articles have been analyzed using Friberg's model. Results: The results of the literature review were shown in three main themes: the importance of communication for the quality of care, the impact of the environment on the care relationship and related party support as an input in the grief process. Summary: Relatives in the studies experienced shortcomings in care regarding communication and information, support and care environment. The shortcomings led to unnecessary suffering and deteriorating quality of life. Relatives had a desire for clear and easy to understand communication from care staff, emotional confirmation and understanding in their grieving process and a desire for participation in the care process.

Bakgrund: Palliativ vård definieras som den vård som ges i slutskedet av patientens liv. Målet med den palliativa vården är att lindra lidande och främja välbefinnande. Sjuksköterskor inom palliativ vård har ett stort ansvar gentemot närstående men specifikt mot patienten för att eftersträva ett värdigt liv för personen i livets slut. Syfte: Syftet var att beskriva sjuksköterskors erfarenheter av att vårda patienter i livets slutskede inom slutenvården. Metod: En allmän litteraturöversikt genomfördes. Sju kvalitativa, två kvantitativa samt en mixad metod inkluderades. Resultat: Resultatet delades in i tre huvudteman, brist på kunskap eller kompetens, känslomässiga reaktioner och vikten av stöd och samarbete. Sammanfattning: Sjuksköterskor som arbetar inom den palliativa vården är i behov av kontinuerlig utbildning, få möjligheten att lära sig kommunikationsstrategier samt ha en god samverkan i förhållande till olika professioner. Sjuksköterskor behöver ge patienten en säker och personcentrerad vård in i livet slutskede., Background: Palliative care is defined as the care provided in the final stages of the patient's life. The goal of palliative care is to alleviate suffering and promote health. Nurses in palliative care have a responsibility towards patients and relatives, especially towards the patient so they can live a life with dignity into the last time of life. Aim: The aim is to describe nurses experience for patients at the end of life withinin patients care. Method: A literature review was conducted and seven qualitative, two quantitative articles and one mixed method were included. Results: The results were divided into three themes, lack of knowledge or competence, emotional reactions, and the importance of support and cooperations. Summary: Nurses who work with palliative care need continuous training, have the opportunity to learn communications strategies and to have a good collaboration in relation to different professions. Nurses need to provide the patient with safe and individual care into final stages of life.

BackgroundPrevious studies have demonstrated positive impacts of advance care planning (ACP) on end-of-life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision-making in their final days of life.MethodsWe analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision-making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient-engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life-prolonging treatments, limiting or withholding certain treatments, and receipt of comfort-oriented care). All analyses accounted for the complex survey design of HRS.ResultsAmong 870 adults (weighted N = 2,812,380) with dementia who died in 2000-2014 and required surrogate decision-making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life-prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2 pp; P-for-trend = 0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort-oriented care did not change.ConclusionsOur findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life-prolonging treatments are still common among PLWD who require surrogate decision-making, a population who might benefit greatly from early ACP.

Purpose of reviewTo present new findings in order to aid in the provision of high-quality symptom management and psychosocial care for adolescents and young adults with advanced cancer at the end of life.Recent findingsBehavioral health providers support patients by teaching them symptom control skills, building legacies, and making meaning of their lives. Integration of cultural values is essential for comprehensive assessment and decision-making. Effective management of physiological symptoms and psychological distress begins with accurate communication about prognosis and goals of care that focus on patient preferences and priorities. Oncology teams promote quality of life and the successful management of fatigue, pain, decreased mobility, poor appetite, and dyspnea with the early inclusion of palliative care. While provision of end-of-life care in a young person with cancer presents challenges, multidisciplinary teams can effectively accompany patients in this journey by prioritizing patient and family preferences to promote quality of life.

Bakgrund: Palliativ vård i livets slut innebär att främja välbefinnande och lindra lidande för patienten den sista tiden i livet. För att skapa bästa förutsättningar för palliativ vård är kommunikation nyckeln som skapar relationer mellan sjuksköterska, patient, närstående och vårdteam. Med god kommunikation kan sjuksköterskan bemöta, involvera, informera patienten och närstående om patientens sjukdomsprocess samt tillämpa bästa möjliga vård i livet slut. Syfte: Att beskriva sjuksköterskors erfarenheter av kommunikation med patienter i livets slut. Metod: En litteraturöversikt med tio vetenskapliga artiklar som hämtades från databaserna PubMed och Cinahl Complete. Artiklarna analyserades enligt Fribergs analysmodell. Resultat: Analysen av resultatet består av fyra teman; (1) Samarbete i arbetsgruppen, (2) Samtal om existentiella frågor, (3) Kulturella faktorer och (4) Behov av kunskap och erfarenheter. Sammanfattning: Kommunikationen är sjuksköterskan viktigaste redskap. Med kommunikation byggs mellanmänskliga relationer med patienter, närstående och multidisciplinära teamet i livets slut. En god kommunikation ger förutsättningar för att leverera bästa möjliga vård i livet slut till patient och närstående., Background: End-of-life palliative care promotes well-being, quality of life, and alleviates suffering for patients in the last days of their lives. In order to create the best possible conditions for palliative care to fulfill its function, communication is the key that creates relationships between the nurse, the patient, relatives and everyone else who is part of the care team. Based on good communication, the nurse can meet, involve, inform the patient and their relatives about the patient's disease process and apply the best possible care at the end of life. Aim: The aim was to describe nurses’ experiences of communication with patients at the end of life. Method: The method being used is a literature review based on ten articles selected from databases PubMed and Cinahl Complete. Fridbergs analysis model was used to analyze the articles. Results: The analysis of the results consists of four themes; (1) Collaboration in the work group, (2) Conversations about existential issues, (3) Cultural challenges and (4) The need of knowledge and experience. Summary: Communication is the most important tool that a nurse owns to build interpersonal relationships with the patient, relatives and multidisciplinary team in end-of-life care. Good communication provides the conditions for delivering the best possible end of life care to the patient and their loved ones.

OBJECTIVES: The aim of this study was to discuss end-of-life care in the context of Rawls' and Daniels' philosophy of justice. The study is based on an empirical survey of Swedish physicians who were asked whether they would want the option of physician-assisted suicide (PAS) for themselves (hereafter called own preferences), what are their attitudes towards PAS in general and whether they were prepared to prescribe PAS drugs to eligible patients. The question is to what extent the physicians' answers are impartial and consistent in a Rawlsian sense. METHODS: The underlying indicator was the physicians' own preferences. Kappa score inter-rater agreement was measured between that response and that same physician's general attitude towards allowing PAS and preparedness to prescribe PAS drugs. The coherence of provided comments and arguments were analysed using content analysis. RESULTS: Palliative care physicians are the least willing to offer PAS, and surgeons and psychiatrist the most willing. There is a discrepancy between physicians' general attitudes about allowing PAS, their own wishes to be offered PAS at the end of life and the concrete action of prescribing PAS drugs. Arguments given for not prescribing PAS by those in favour of PAS are seemingly but not truly inconsistent. CONCLUSIONS: Those supporting PAS provided impartial and consistent arguments for their stances in a Rawlsian sense, while those against PAS provided partial arguments. Two specialties, psychiatrists and palliative care physicians, were coherent in their reasoning about PAS for themselves and their willingness to prescribe the needed drugs.

Bakgrund: Palliativ vård i livets slut innebär att främja välbefinnande och lindra lidande för patienten den sista tiden i livet. För att skapa bästa förutsättningar för palliativ vård är kommunikation nyckeln som skapar relationer mellan sjuksköterska, patient, närstående och vårdteam. Med god kommunikation kan sjuksköterskan bemöta, involvera, informera patienten och närstående om patientens sjukdomsprocess samt tillämpa bästa möjliga vård i livet slut. Syfte: Att beskriva sjuksköterskors erfarenheter av kommunikation med patienter i livets slut. Metod: En litteraturöversikt med tio vetenskapliga artiklar som hämtades från databaserna PubMed och Cinahl Complete. Artiklarna analyserades enligt Fribergs analysmodell. Resultat: Analysen av resultatet består av fyra teman; (1) Samarbete i arbetsgruppen, (2) Samtal om existentiella frågor, (3) Kulturella faktorer och (4) Behov av kunskap och erfarenheter. Sammanfattning: Kommunikationen är sjuksköterskan viktigaste redskap. Med kommunikation byggs mellanmänskliga relationer med patienter, närstående och multidisciplinära teamet i livets slut. En god kommunikation ger förutsättningar för att leverera bästa möjliga vård i livet slut till patient och närstående., Background: End-of-life palliative care promotes well-being, quality of life, and alleviates suffering for patients in the last days of their lives. In order to create the best possible conditions for palliative care to fulfill its function, communication is the key that creates relationships between the nurse, the patient, relatives and everyone else who is part of the care team. Based on good communication, the nurse can meet, involve, inform the patient and their relatives about the patient's disease process and apply the best possible care at the end of life. Aim: The aim was to describe nurses’ experiences of communication with patients at the end of life. Method: The method being used is a literature review based on ten articles selected from databases PubMed and Cinahl Complete. Fridbergs analysis model was used to analyze the articles. Results: The analysis of the results consists of four themes; (1) Collaboration in the work group, (2) Conversations about existential issues, (3) Cultural challenges and (4) The need of knowledge and experience. Summary: Communication is the most important tool that a nurse owns to build interpersonal relationships with the patient, relatives and multidisciplinary team in end-of-life care. Good communication provides the conditions for delivering the best possible end of life care to the patient and their loved ones.

BACKGROUND: Communication about end of life (EoL) and EoL care is critically important for providing quality care as people approach death. Such communication is often complex and involves many people (patients, family members, carers, health professionals). How best to communicate with people in the period approaching death is not known, but is an important question for quality of care at EoL worldwide. This review fills a gap in the evidence on interpersonal communication (between people and health professionals) in the last year of life, focusing on interventions to improve interpersonal communication and patient, family member and carer outcomes.OBJECTIVES: To assess the effects of interventions designed to improve verbal interpersonal communication about EoL care between health practitioners and people affected by EoL.SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018, without language or date restrictions. We contacted authors of included studies and experts and searched reference lists to identify relevant papers. We searched grey literature sources, conference proceedings, and clinical trials registries in September 2019. Database searches were re-run in June 2021 and potentially relevant studies listed as awaiting classification or ongoing.SELECTION CRITERIA: This review assessed the effects of interventions, evaluated in randomised and quasi-randomised trials, intended to enhance interpersonal communication about EoL care between patients expected to die within 12 months, their family members and carers, and health practitioners involved in their care. Patients of any age from birth, in any setting or care context (e.g. acute catastrophic injury, chronic illness), and all health professionals involved in their care were eligible. All communication interventions were eligible, as long as they included interpersonal interaction(s) between patients and family members or carers and hea

Background: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. Aim: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. Design: An exploratory qualitative study, using semi-structured interviews. Setting/participants: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. Results: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. Conclusions: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.

Background: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. Aims: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. Design: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. Data Sources: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. Findings: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. Conclusions: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

BackgroundPrevious studies have demonstrated positive impacts of advance care planning (ACP) on end-of-life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision-making in their final days of life.MethodsWe analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision-making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient-engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life-prolonging treatments, limiting or withholding certain treatments, and receipt of comfort-oriented care). All analyses accounted for the complex survey design of HRS.ResultsAmong 870 adults (weighted N = 2,812,380) with dementia who died in 2000-2014 and required surrogate decision-making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life-prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2 pp; P-for-trend = 0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort-oriented care did not change.ConclusionsOur findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life-prolonging treatments are still common among PLWD who require surrogate decision-making, a population who might benefit greatly from early ACP.

Introduction: Qualified end-of-life care remains an international challenge. The frequent use of termssuch as “Palliative Care” and “end of life” has certain implications on the prognosis of the patient andin determining effective decision-making related to appropriate care. However, is such terminologycommonly used in the literature? However, whether such terminology is commonly used in literatureremains unknown. The objetive was verify the terms used in the Brazilian and international scientificliterature on palliative practice in the final stage of life and to describe the terminological understanding based on its usage characteristics. Materials and methods: Studies from the lilacs and Pubmed databases published from 2012 to 2017 using the descriptors “end of life,” “terminal stage,” “Palliative Care,” and “Hospice care” were included in this exploratory systematic review. Results: Ten articles were selected out of a total of 1909. A prevalence of American medical studies with heterogeneous methodological content that presented diverse conceptual proposals was identified. Conclusion: The analysis of these articlesreinforced the need to work on the conceptual dissemination of palliative care with an emphasis on the implications of the use of this approach only at the end of life, which hinders the process of improving the quality of care at the time of death., Introdução: a assistência qualificada ao fim da vida ainda é um desafio internacional. O uso frequentede termos como “cuidados paliativos”, “fim de vida” tem implicações no prognóstico do paciente e naefetiva tomada de decisão para a prestação de cuidados adequados. Mas o seu entendimento terminológico é de uso comum na literatura? O objetivo era verificar o emprego dos termos utilizados na literatura científica nacional brasileira e internacional sobre prática paliativa na fase final da vida e descrever a compreensão terminológica relacionada às suas características de uso. Materiais e métodos: revisão sistemática exploratória nas bases de dados lilacs e Pubmed, no período de 2012 a 2017, utilizando os descritores “fim de vida”, “fase terminal”, “cuidados paliativos” e “cuidados em hospice”. Resultados: foram encontrados 1909 artigos e 10 foram selecionados, identificou-se um predomínio de estudos médicos norteamericanos, com conteúdo metodológico heterogêneo e que apresentavam propostas conceituais diversificadas. Conclusão: os artigos analisados reforçam a necessidade de se trabalhar a disseminação conceitual dos cuidados paliativos, detalhando as implicações da associação para abordagem apenas no final da vida, fator que dificulta o processo de melhoria da qualidade do cuidado no fim da vida., Introducción: la asistencia cualificada en el fin de la vida todavía es un desafío internacional. El uso frecuente de los términos como cuidados paliativos y fin de la vida tienen implicaciones en el pronóstico del paciente y en la toma de decisiones efectiva para la oferta de cuidado adecuado. Pero, ¿su comprensión terminológica es de uso común en la literatura? El objetivo fue el empleo de los términos utilizados en la literatura científica nacional brasileña e internacional sobre la práctica paliativa en la fase final de la vida y describir la comprensión terminológica relacionada por sus características de uso. Materiales y métodos: revisión sistemática exploratoria en las bases de dados Lilacs y Pubmed, en el periodo de 2012 a 2017, empleando los descriptores “final de vida”, “fase terminal”, “cuidados paliativos” y “cuidados enhospice”. Resultados: fueron encontrados 1909 artículos y seleccionados 10. Se identificó una prevalencia de estudios médicos norteamericanos, con un contenido metodológico heterogéneo que presentaron propuestas conceptuales diversificadas. Conclusión: los artículos analizados reforzaron la necesidad de trabajar en la diseminación conceptual de los cuidados paliativos, detallando las implicaciones de la asociación a abordaje apenas, al final de la vida, factor que dificulta el proceso de mejoría en la calidad de la asistencia en la muerte.

The palliative needs of the child differ substantially from those of the adult. Although palliative sedation is widely accepted as an important and necessary therapy in palliative medicine, most guidelines are focused on adult care. Palliative sedation is the controlled use of sedative drugs to limit consciousness, with the goal of relieving otherwise untreatable symptoms or suffering in a manner that is ethically acceptable to the patient, family, and healthcare providers. Its process involves three fundamental points: that it be indicated in a patient in a situation of irreversibility (“terminal illness”), with a “refractory symptom” with the participation of an expert team for symptom management, that the informed consent process has been carried out and that it complies with an established therapeutic protocol. The most frequent causes for initiating palliative sedation in pediatrics are pain, dyspnea, agitation and convulsions; and the most frequently used drugs are: midazolam, levomepromazine, phenobarbital, chlorpromazine, haloperidol. This paper describes the theoretical concepts related to palliative sedation, the bioethical aspects and the therapeutic protocol to carry it out., Las necesidades paliativas del niño, difieren sustancialmente a las del adulto. Aunque la sedación paliativa es ampliamente aceptada como una terapia importante y necesaria en medicina paliativa, la mayoría de las guías están enfocadas en la atención de adultos. La sedación paliativa es el uso controlado de fármacos sedantes para limitar la conciencia, con el objetivo de aliviar síntomas o sufrimiento, que de otro modo serían intratables, de una manera que es éticamente aceptada por el paciente, la familia y el personal sanitario. Su proceso implica tres puntos fundamentales: que sea indicado en un paciente en situación de irreversibilidad (“enfermedad terminal”), con un un «Síntoma refractario» con la participación de un equipo experto para el manejo de síntomas, que haya llevado a cabo el proceso de consentimiento informado y que cumpla un protocolo terapéutico establecido. Las causas más frecuentes para iniciar sedación paliativa en pediatría son dolor, disnea, agitación y convulsiones; y los fármacos usados con mayor frecuencia son: midazolam, levomepromazina, fenobarbital, clorpromacina, haloperidol. El presente trabajo describe los conceptos teóricos relacionados con la sedación paliativa, los aspectos bioéticos y el protocolo terapéutico para llevarla a cabo.

Background There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. Methods The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. Results Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. Conclusion End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

The unrestrainable evolution of medical science and technology is drastically changing health-care, enabling new medical procedures and remedies, which are increasingly intertwined with moral principles. Although a uniform European approach on assisted suicide is lacking, a common trend is developing: the boundary between euthanasia, assisted suicide and end-of-life care and the frontiers of legitimate medicine are becoming increasingly blurred. In Italy, a ruling of the Constitutional Court, no. 242/2019, declared the partial unconstitutionality of article 580 of the Italian Criminal Code, which prohibited assistance in suicide. Specifically, article 580 excluded the criminal liability for the person who, in the manner provided for in Articles 1 and 2 of the law 22 December 2017, no. 219, "facilitates the execution of intention of suicide, autonomously and freely formed, of one person kept alive by life-sustaining treatments and suffering from an irreversible pathology, source of physical or psychological suffering that he/she deems intolerable, but fully capable of making free aware decisions, provided that such conditions and methods of execution have been verified by a public structure of the national health service, following the opinion of the territorially competent ethics committee." The present paper analyzes the legal regime of assisted suicide in Italy, the role of the rule of law, and the crucial boundary between the branches of government with regard to this delicate issue, and investigates current legal challenges and potential future legal tracks.

Background: Symptom management remains a critical challenge at the end of life. Barriers to symptom relief predominantly focus on perspectives of physicians, patients or care systems but rarely acknowledge the views of nurses. Aim: Examine nurses’ perceptions of barriers to adequate end-of-life symptom relief. Methods: Semi-structured interviews with 25 nurses across different settings who routinely prescribed and/or administered symptom relief to patients near the end of life in Queensland and New South Wales, Australia. Data were analysed using a six-stage hybrid thematic analysis technique. Findings: Nurses identified five barriers to adequate symptom management. Firstly, fears concerning symptom relief such as hastening death, causing addiction, loss of consciousness, and legal/professional repercussions affected clinical practice. Secondly, lack of knowledge, experience and training hindered symptom management. Nurses discussed knowledge gaps regarding medication and palliative care, symptom assessments, recognition of dying and relevant laws. Thirdly, personal, cultural and religious beliefs influenced staff's willingness to offer pain relief, and patients’ and families’ willingness to accept it. Lack of communication between medical teams, patients and families further challenged symptom management. Lastly, institutional barriers played a considerable role as time constraints, insufficient staff support and difficulties accessing resources prevented end-of-life symptom management. Discussion: The identified barriers highlight a substantial need for targeted interventions. Setting-specific challenges such as limited access to medication, staff and palliative care services must be addressed. Conclusions: To provide better end-of-life care, services should acknowledge nurses’ unique insights. Particular attention should be on supporting nurses in aged care facilities, community settings and remote areas.

Objectives: Unbefriended older adults are those who lack the capacity to make medical decisions and do not have a completed advance directive that can guide treatment decisions or a surrogate decision maker. Adult orphans are those who retain medical decision-making capacity but are at risk of becoming unbefriended due to lack of a completed advance health care directive and lack of a surrogate decision maker. In a follow-up to the 2016 American Geriatrics Society (AGS) position statement on unbefriended older adults, we examined clinicians' experiences in caring for unbefriended older adults and adult orphans.Methods: Clinicians recruited through the AGS (N = 122) completed an online survey about their experiences with unbefriended older adults regarding the perceived frequency of contact, clinical concerns, practice strategies, and terminology; and also with adult orphans regarding the perceived frequency of contact, methods of identification, and terminology.Results: Almost all inpatient (95.9%) and outpatient (86.4%) clinicians in this sample encounter unbefriended older adults at least quarterly and 92.2% of outpatient clinicians encounter adult orphans at least quarterly. Concerns about safety (95.9%), medication self-management (90.4%), and advance care planning (86.3%) bring unbefriended older adults to outpatient clinicians' attention "sometimes" to "frequently." Prolonged hospital stays (87.7%) and delays in transitioning to end-of-life care (85.7%) bring unbefriended older adults to inpatient clinicians' attention "sometimes" to "frequently." Clinicians apply a wide range of practice strategies to these populations. Participants suggested alternative terminology to replace "unbefriended" and "adult orphan."Conclusions: This study suggests that unbefriended older adults are frequently encountered in geriatrics practice, both in the inpatient and outpatient settings, and that there is widespread awareness of adult orphans in the outpatient setting. Clinicia

Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code. Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments. Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method. Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences. Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate

BackgroundGroup visits have the potential to help patients identify their health care values and engage in the emotionally and cognitively challenging task of advance care planning (ACP) in a resource-efficient manner by providing a forum for social learning and social support.ObjectiveTo evaluate the feasibility and acceptability of disease-specific group visits for patients with heart failure and their caregivers.DesignFeasibility trial of a 90-minute group visit held for 10 separate groups and led by a trained facilitator using the video-based PREPARE for Your Care ACP tool.Setting/subjectsOlder adults with recent hospitalization for heart failure (n = 36; median age, 74 years) and their caregivers (n = 21).MeasurementsPre- and post-visit surveys and a postvisit telephone interview assessing perceived value and acceptability; structured nonparticipant observations to assess process and feasibility.ResultsMean scores from the postgroup visit evaluation showed that participants reported that they felt comfortable discussing ACP in a group (4.59), understood the information covered (4.70), and were able to identify and clarify their health care values (4.43). Interview and observation data demonstrated that participants were able to identify and clarify their preferences by listening and learning from a diverse range of perspectives in the group and that the disease-focused nature of the group visit created a supportive space for participants to share their experiences.ConclusionsDisease-focused ACP group visits were feasible to conduct and acceptable to participants, underscoring their value as an efficient intervention to engage patients and caregivers in the otherwise time- and resource-intensive task of ACP.

ObjectivesIn a prospective study of platinum-resistant ovarian cancer patients, we examined whether the Disease-related Symptoms-Physical (DRS--P) scale of the NCCN/FACT-Ovarian Cancer Symptom Index-18 (NFOSI-18) is responsive to clinical change in patients estimated by their provider to survive at least six months.MethodsThe NFOSI-18, and other FACT measures, was collected at study entry and 3 and 6 months post-enrollment. Measures were compared for those who died or dropped off study prior to 3 months or prior to 6 months (assumed as health deterioration over time), or those who stayed on study through 6 months (presumed as stable disease over time). Statistical analyses included a fitted linear mixed model for estimating the group differences over time, Cox regression to assess the probability of survival with patient-reported outcomes, and effect size.ResultsDRS-P scores of patients who completed only one assessment were significantly lower compared to patients who were able to complete two assessments [5.9 points lower (2.0-9.8); p < 0.01], or three assessments [8.1 points lower (4.8-11.5); p < 0.01]. Measures of abdominal discomfort, functional well-being, emotional well-being, and quality of life were also significant, but treatment side effects were not. Further, in every scale except for neurotoxicity, higher (better) baseline scores were associated with a decreased likelihood of death, after adjusting for age, performance and disease status.ConclusionThe NFOSI-18 DRS-P scale is responsive to clinical change. It has potential as an indicator of changing health status with ovarian cancer disease progression, distinct from treatment side effects.

In response to there being no specialist paediatric palliative care (PPC) team in a region of England, we undertook a 12-month quality improvement project (funded by National Health Service England's Marginal Rate Emergency Threshold and Readmission fund) to improve children's end-of-life care.Improvements were implemented during two plan-do-study-act (PDSA) cycles and included specialist experts, clinical champions, focused education and training, and tools and materials to support identification, care planning and communication. A lead paediatrician with expertise in PPC (10 hours/week) led the project, supported by a PPC nurse (3 days/week) and a network administrator (2 days/week).Children who died an expected death were identified from the child death review teams. Numbers of non-elective hospital admissions, bed days, and costs were identified.Twenty-nine children died an expected death during the 12 months of the project and coincidentally 29 children died an expected death during the previous 12 months. The median number of non-elective admissions in the last 12 months of life was reduced from two per child to one. There was a reduction in specialist hospital (14%) and district general hospital (38%) bed days. The percentage of children who died an expected death who had anticipatory care plans rose from 50% to 72%.The results indicate that a network of clinicians with expertise in PPC working together across a region can improve personalised care planning and reduce admissions and bed days for children in their last year-of-life with reduced bed utilisation costs.

Introducción: El delirium es un síndrome muy común en los últimos días en el paciente con enfermedad avanzada, caracterizándose por alteración en la conciencia y en la atención. Este estado confusional agudo, que resulta de una disfunción orgánica cerebral difusa, tiene una incidencia muy elevada en pacientes hospitalizados, sobre todo en los terminales, a los nos referiremos en este trabajo. El fármaco de elección para el tratamiento de este trastorno es el haloperidol, un antagonista dopaminérgico. Objetivo: El objetivo de esta revisión bibliográfica es evaluar la eficacia, seguridad del haloperidol en pacientes con delirium que se encuentren en Cuidados Paliativos y valorar si el tratamiento afecta a la supervivencia de los pacientes. Métodos: Para esta revisión se han escogido 8 artículos de un total de 45 recogidos en Pubmed, publicados en los últimos 5 años que contuviesen las palabras clave “delirium”, “confusional”, “haloperidol”, “palliative care”, “terminal care”. Resultados: El haloperidol es uno de los fármacos de elección en el tratamiento de los síntomas del delirium y se necesitan estudios para valorar si en pacientes que sufren de una enfermedad avanzada terminal es eficaz el uso de antipsicóticos para tratar estos síntomas. Para esto se han estudiado 8 artículos para establecer si el haloperidol es eficaz en pacientes que presentan delirium que se encuentran en unidades de cuidados paliativos. Conclusiones: Se necesitan más estudios en este tema, pero lo que se puede deducir de estos estudios es que el haloperidol es eficaz, seguro y no altera la supervivencia de los pacientes, Introdución: o delirio é unha síndrome moi común nos últimos días en pacientes con enfermidade avanzada, caracterizada por alteración da conciencia e da atención. Este estado confusional agudo, que resulta dunha disfunción orgánica difusa do cerebro, ten unha incidencia moi alta en pacientes hospitalizados, especialmente en pacientes terminais, ao que nos referiremos neste traballo. O medicamento elixido para o tratamento deste trastorno é o haloperidol, un antagonista da dopamina. Obxectivo: o obxectivo desta revisión bibliográfica é avaliar a eficacia e seguridade do haloperidol en pacientes con delirio que están en coidados paliativos e avaliar se o tratamento afecta a supervivencia dos pacientes. Métodos: para esta revisión, escolléronse 8 artigos dun total de 45 recollidos en Pubmed, publicados nos últimos 5 anos que contiñan as palabras clave "delirio", "confuso", "haloperidol", "coidados paliativo", "coidados terminais" . Resultados: o haloperidol é un dos medicamentos elixidos no tratamento dos síntomas do delirio e son necesarios estudos para avaliar se o uso de antipsicóticos para tratar estes síntomas é eficaz en pacientes que sofren unha enfermidade terminal avanzada. Para isto, estudáronse 8 artigos para establecer se o haloperidol é eficaz en pacientes con delirio que se atopan en unidades de coidados paliativos. Conclusións: son necesarios máis estudos sobre este tema, pero o que se pode deducir destes estudos é que o haloperidol é eficaz, seguro e non altera a supervivencia dos pacientes, Introduction: Delirium is a very common syndrome in recent days in patients with advanced disease, characterized by altered consciousness and attention. This acute confusional state, which results from diffuse organic brain dysfunction, has a very high incidence in hospitalized patients, especially in terminal patients, which we will refer to in this work. The drug of choice for the treatment of this disorder is haloperidol, a dopamine antagonist. Objective: The objective of this bibliographic review is to evaluate the efficacy and safety of haloperidol in patients with delirium who are in Palliative Care and to assess whether the treatment affects the survival of the patients. Methods: For this review, 8 articles were chosen out of a total of 45 collected in Pubmed, published in the last 5 years that contained the keywords "delirium", "confusional", "haloperidol", "palliative care", "terminal care ”. Results: Haloperidol is one of the drugs of choice in the treatment of delirium symptoms and studies are needed to assess whether the use of antipsychotics to treat these symptoms is effective in patients suffering from terminal advanced disease. For this, 8 articles have been studied to establish whether haloperidol is effective in patients with delirium who are in palliative care units. Conclusions: More studies are needed on this topic, but what can be deduced from these studies is that haloperidol is effective, safe and does not alter the survival of patients

Acute healthcare services are extremely important, particularly during the COVID-19 pandemic, as healthcare demand has rapidly intensified, and resources have become insufficient. Studies on specific prepandemic hospitalization and emergency department visit (EDV) trends in proximity to death are limited. We examined time-trend specificities based on sex, age, and cause of death in the last 2 years of life. Datasets containing all hospitalizations and EDVs of elderly residents in Friuli-Venezia Giulia, Italy (N = 411,812), who died between 2002 and 2014 at ≥ 65 years, have been collected. We performed subgroup change-point analysis of monthly trends in the 2 years preceding death according to sex, age at death (65–74, 75–84, 85–94, and ≥ 95 years), and main cause of death (cancer, cardiovascular, or respiratory disease). The proportion of decedents (N = 142,834) accessing acute healthcare services increased exponentially in proximity to death (hospitalizations = 4.7, EDVs = 3.9 months before death). This was inversely related to age, with changes among the youngest and eldest decedents at 6.6 and 3.5 months for hospitalizations and at 4.6 and 3.3 months for EDVs, respectively. Healthcare use among cancer patients intensified earlier in life (hospitalizations = 6.8, EDVs = 5.8 months before death). Decedents from respiratory diseases were most likely to access hospital-based services during the last month of life. No sex-based differences were found. The greater use of acute healthcare services among younger decedents and cancer patients suggests that policies potentiating primary care support targeting these at-risk groups may reduce pressure on hospital-based services.

This dissertation consists of three papers examining differences between racial and ethnic groups in quality and experiences of care for older adults with heart failure (HF), as well as caregivers of patients with Alzheimer’s and related dementias (ADRD). In the first paper, I used data from a nationally representative sample of older adults to examine differences in the intensity of medical intervention received at the end of life by patients with HF. Specifically, I analyzed whether non-Hispanic Black patients with HF were more likely to have a higher number of hospital admissions, more likely to be admitted to the intensive care unit and utilize life support, and more likely to die in a hospital than non-Hispanic White patients. I found that Black HF patients were more likely than White HF patients to experience high levels of treatment intensity at the end of life. Black patients with HF were more likely to die in a hospital and more likely to spend time on life support in the last two years of life than White patients. Additionally, I found that Black patients were less likely to have an advance directive in place at the end of life relative to White patients. In the second paper, I used the same nationally representative sample of older adults to examine factors associated with symptom burden in HF at the end of life. Specifically, I analyzed whether non-Hispanic Black patients were more likely to experience the most common symptoms associated with HF in the last months of life, including fatigue, shortness of breath, pain, and depression relative to non-Hispanic White patients. I found that contrary to expectation, Black patients were not more likely than White patients to experience fatigue, shortness of breath, pain, or depression in the last months of life. In fact, Black patients were less likely to report feeling fatigue, less likely to experience depression, and less likely to report a higher symptom count overall. A range of other factors, including he

BackgroundAdvance care planning has been shown to improve end of life decision-making for people with dementia. However, the impact of goals of care conversations between people with dementia and their caregivers has not been characterized.ObjectiveIn this study, we evaluate the association between goals of care conversations and advance care planning outcomes.MethodsRetrospective advance care planning measures were collected via a questionnaire administered to 166 caregivers after the death of the person with dementia for whom they provided care.ResultsAt time of death, the majority of decedents with dementia had advance directives, health care agents, and previous goals of care conversations with their caregiver. Goals of care conversations were significantly associated with the perceived usefulness of advance directives, the perceived adherence to advance directives, and decedent dying at their desired place of death, but not with disagreements around end-of-life care.ConclusionOur findings suggest that goals of care conversations are an important component of advance care planning. These findings support the development of interventions that facilitate such conversations between people with dementia and their caregivers.

BackgroundPatients with end-stage liver disease awaiting liver transplantation (LT) are seriously ill and experience fluctuating periods of clinical decompensation. Discussion of a patient's advance care planning (ACP) wishes early in their dynamic disease course is critical to providing value-aligned care while awaiting LT. We aimed to evaluate current ACP documentation and assess readiness to engage in ACP in this population.MethodsWe conducted a retrospective study of adults undergoing LT evaluation from January 2017 to June 2017 and assessed characteristics associated with documentation using logistic regression. We then administered a survey to LT candidates from March 2018 to May 2018 to determine self-reported readiness to engage in ACP (range 1 = not at all ready to 5 = very ready).ResultsAmong 170 LT candidates, median (interquartile range) age was 58 (53-65), 65% were men, MELDNa was 15 (11-21), and Child-Pugh A/B/C were 33/38/29%. Nine percent reported completing ACP prior to LT evaluation, but 0% had legal ACP forms or end-of-life wishes documented in the medical record. A durable power of attorney (DPOA) was discussed with 10%. In univariable analysis, white race (OR 4.16, p = 0.03) and female sex (OR 3.06, p = 0.04) were associated with ACP documentation, but Child-Pugh score and MELDNa were not. Of the 41 LT candidates who completed the ACP survey, 93% were ready to appoint a DPOA and 85% were ready to discuss end-of-life care.ConclusionThere is a paucity of ACP documentation and identification of DPOA among LT candidates, despite patients reporting readiness to complete ACP and appoint a DPOA. These results reveal an opportunity for tools to facilitate discussions around ACP between clinicians, patients, and their caregivers.

The COVID-19 pandemic is devastating the health of hundreds of thousands of people who live and work in U.S. jails and prisons. Due to dozens of large outbreaks in correctional facilities, tens of thousands of seriously ill incarcerated people are receiving medical care in the community hospital setting. Yet community clinicians often have little knowledge of the basic rights and ethical principles governing care of seriously ill incarcerated patients. Such patients are legally entitled to make their own medical decisions just like non-incarcerated patients, and retain rights to appoint surrogate decision makers and make advance care plans. Wardens, correctional officers, and prison health care professionals should not make medical decisions for incarcerated patients and should not be asked to do so. Dying incarcerated patients should be offered goodbye visits with their loved ones, and patients from federal prisons are legally entitled to them. Community health care professionals may need to advocate for this medically vulnerable hospitalized patient population to receive ethically appropriate, humane care when under their care in community hospitals. If ethical care is being obstructed, community health care professionals should contact the prison's warden and medical director to explain their concerns and ask questions. If necessary, community clinicians should involve a hospital's ethics committee, leadership, and legal counsel. Correctional medicine experts and legal advocates for incarcerated people can also help community clinicians safeguard the rights of incarcerated patients.

BackgroundElderly patients with gastrointestinal cancer and mental illness have significant comorbidities that can impact the quality of their care. We investigated the relationship between mental illness and frequent emergency department (ED) use in the last month of life, an indicator for poor end-of-life care quality, among elderly patients with gastrointestinal cancers.MethodsWe used SEER-Medicare data to identify decedents with gastrointestinal cancers who were diagnosed between 2004 and 2013 and were at least 66 years old at time of diagnosis (median age: 80 years, range: 66-117 years). We evaluated the association between having a diagnosis of depression, bipolar disorders, psychotic disorders, anxiety, dementia, and/or substance use disorders and ED use in the last 30 days of life using logistic regression models.ResultsOf 160,367 patients included, 54,661 (34.1%) had a mental illness diagnosis between one year prior to cancer diagnosis and death. Patients with mental illness were more likely to have > 1 ED visit in the last 30 days of life (15.6% vs. 13.3%, p < 0.01). ED use was highest among patients with substance use (17.7%), bipolar (16.5%), and anxiety disorders (16.4%). Patients with mental illness who were male, younger, non-white, residing in lower income areas, and with higher comorbidity were more likely to have multiple end-of-life ED visits. Patients who received outpatient treatment from a mental health professional were less likely to have multiple end-of-life ED visits (adjusted odds ratio 0.82, 95% confidence interval 0.78-0.87).ConclusionsIn elderly patients with gastrointestinal cancers, mental illness is associated with having multiple end-of-life ED visits. Increasing access to mental health services may improve quality of end-of-life care in this vulnerable population.

AimsThis study aimed to describe symptom prevalence of pain, shortness of breath, anxiety, and nausea and to identify factors associated with symptom relief in patients with heart failure during their last week of life.Methods and resultsThis nationwide study used data from the Swedish Register of Palliative Care and the Swedish Causes of Death Certificate Register. The sample included 4215 patients with heart failure as the underlying cause of death. Descriptive statistics and logistic regression were used to analyse data. Pain was the most prevalent symptom (64.0%), followed by anxiety (45.1%), shortness of breath (28.8%), and nausea (11.4%). Pain was the most often totally relieved (77.5%), followed by anxiety (68.4%), nausea (54.7%), and shortness of breath (37.1%). Key aspects of palliative care such as documented palliative care in the patient record, individual medication prescriptions by injection, symptom assessment with validated scales, documented end-of-life discussions with patients and/or family members, and external consultation were significantly associated with symptom relief. Relief of pain, shortness of breath, anxiety, and nausea were significantly better managed in nursing homes and hospice/inpatient palliative care compared with care in hospitals.ConclusionsThe results show that key aspects of palliative care during the last week of life are significantly associated with symptom relief. Increased access to palliative care could provide a way to improve care during the last week of life for patients with heart failure. Home-based settings provided more symptom relief than hospitals, which may indicate that the latter focuses on treatments and saving lives rather than promoting life before death.

BackgroundA unique window of opportunity currently exists to generate ethical and practical considerations presented by interventional HIV cure-related research at the end-of-life (EOL). Because participants would enroll in these studies for almost completely altruistic reasons, they are owed the highest ethical standards, safeguards, and protections. This qualitative empirical ethics study sought to identify ethical and practical considerations for interventional HIV cure-related research at the EOL.Methods and findingsWe conducted 20 in-depth interviews and three virtual focus groups (N = 36) with four key stakeholder groups in the United States: 1) bioethicists, 2) people with HIV, 3) HIV care providers, and 4) HIV cure researchers. This study produced six key themes to guide the ethical implementation of interventional HIV cure-related research at the EOL: 1) all stakeholder groups supported this research conditioned upon a clearly delineated respect for participant contribution and autonomy, participant understanding and comprehension of the risks associated with the specific intervention(s) to be tested, and broad community support for testing of the proposed intervention(s); 2) to ensure acceptable benefit-risk profiles, researchers should focus on limiting the risks of unintended effects and minimizing undue pain and suffering at the EOL; 3) only well-vetted interventions that are supported by solid pre-clinical data should be tested in the EOL translational research model; 4) the informed consent process must be robust and include process consent; 5) research protocols should be flexible and adopt a patient/participant centered approach to minimize burdens and ensure their overall comfort and safety; and 6) a participant's next-of-kin/loved ones should be a major focus of EOL research but only if the participant consents to such involvement.ConclusionsTo our knowledge, this empirical ethics study generated the first ethical and practical considerations for

BackgroundMoral distress is a state in which a clinician cannot act in accordance with their ethical beliefs because of external constraints. Physician trainees, who work within rigid hierarchies and who lack clinical experience, are particularly vulnerable to moral distress. We examined the dynamics of physician trainee moral distress in end-of-life care by comparing experiences in two different national cultures and healthcare systems.ObjectiveWe investigated cultural factors in the US and the UK that may produce moral distress within their respective healthcare systems, as well as how these factors shape experiences of moral distress among physician trainees.DesignSemi-structured in-depth qualitative interviews about experiences of end-of-life care and moral distress.ParticipantsSixteen internal medicine residents in the US and fourteen junior doctors in the UK.ApproachThe work was analyzed using thematic analysis.Key resultsSome drivers of moral distress were similar among US and UK trainees, including delivery of potentially inappropriate treatments, a poorly defined care trajectory, and involvement of multiple teams creating different care expectations. For UK trainees, healthcare team hierarchy was common, whereas for US trainees, pressure from families, a lack of guidelines for withholding inappropriate treatments, and distress around physically harming patients were frequently cited. US trainees described how patient autonomy and a fear of lawsuits contributed to moral distress, whereas UK trainees described how societal expectations around resource allocation mitigated it.ConclusionThis research highlights how the differing experiences of moral distress among US and UK physician trainees are influenced by their countries' healthcare cultures. This research illustrates how experiences of moral distress reflect the broader culture in which it occurs and suggests how trainees may be particularly vulnerable to it. Clinicians and healthcare leaders in both coun

As end-of-life (EOL) HIV cure-related research expands, understanding perspectives of participants' next-of-kin (NOK) is critical to maintaining ethical study conduct. We conducted two small focus groups and two one-on-one interviews using focus group guides with the NOK of Last Gift study participants at the University of California, San Diego (UCSD). Participating NOK included six individuals (n = 5 male and n = 1 female), including a grandmother, grandfather, partner, spouse, and two close friends. Researchers double-coded the transcripts manually for overarching themes and sub-themes using an inductive approach. We identified six key themes: 1) NOK had an accurate, positive understanding of the Last Gift clinical study; 2) NOK felt the study was conducted ethically; 3) Perceived benefits for NOK included support navigating the dying/grieving process and personal growth; 4) Perceived drawbacks included increased sadness, emotional stress, conflicted wishes between NOK and study participants, and concerns around potential invasiveness of study procedures at the EOL; 5) NOK expressed pride in loved ones' altruism; and 6) NOK provided suggestions to improve the Last Gift study, including better communication between staff and themselves. These findings provide a framework for ethical implementation of future EOL HIV cure-related research involving NOK.

Care of the dementia patient continues to be challenging. It is a terminal condition that many times goes undiagnosed leading to improper evidence-based interventions. Healthcare professionals (HCPs) should initiate goals of care conversations early with patients and their families in order to align treatment preferences. Early integration of palliative medicine is an important intervention that can lead to better manage symptoms and lessen the strain on loved ones. Additionally, early enrollment into hospice should be encouraged with loved ones to promote quality of life as defined by the patient.

Objective: To explore the perceptions of clinical staff on the quality of end-of-life care in an acute private hospital. Methods: A descriptive cross-sectional study with a convenience sample of clinical staff in an acute private hospital were surveyed using a validated end-of-life survey. Data from the surveys were analysed using descriptive statistics for quantitative responses and inductive content analysis for the open-ended responses. Results: Overall, 133 staff completed the survey. Of these, 107 had cared for a dying patient in the hospital. In total, 87.6% of participants felt confident in their ability to recognise a dying patient and 66.7% felt confident in their ability to talk to the patient and family. Almost one-third had not received specific training in the area. Conclusions: Hospitals need to take the lead in ensuring end-of-life care processes are embedded across clinical areas. This includes providing staff with end-of-life care education and support in the delivery of end-of-life care. These strategies will facilitate safe and quality end-of-life care, including better collaboration between patients, families and staff.

Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives.Aim: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers.Design: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019.Setting participants: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region.Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased.Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.