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Preparing for death and making arrangements for end of life care has always been a part of our lives, regardless of however taboo it has seemed. During a global pandemic, have we been forced to see things differently? Death in general is a subject we tend to avoid talking about as a society. However, with the pandemic claiming millions of lives worldwide, can we really avoid discussing it any longer? People of all ages were affected, and countless people unexpectedly lost their loved ones. When thinking of terms such as a 'good death' or 'end of life care', we typically associate these phrases with the terminally ill or the elderly. With the aftermath of the pandemic, we have been faced with the reality that many people affected by Coronavirus were also in great need of palliative care. For many affected by the virus, a good death was a luxury as opposed to the necessity it should be. With the pandemic still ongoing, an important lesson for us to learn is that our negative notions of death need to change, if we are to truly value life. [ABSTRACT FROM AUTHOR]

BackgroundAfter over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society.ObjectiveTo describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying.DesignIn this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers.Participants and settingMulti-disciplinary hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying.Ethical considerationsThe research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms.ResultsThe 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients' last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics.ConclusionWhile being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider's perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients' end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying.

Abstract Background Quality of care at the end of life in hospitals is often perceived to be lower compared to the care that is provided to people who die in their own home. Documenting and measuring indicators of common end-of-life symptoms could help improve end-of-life care in hospitals. This study provided insight into quality indicators for the end-of-life care of patients who died in a Dutch hospital, and assessed differences between deceased patients who were admitted for palliative/terminal care versus patients admitted for other reasons. Methods In a retrospective record review study, trained nurses reviewed electronic health records (EHRs) of patients who died in 2019 (n = 2998), in a stratified sample of 20 Dutch hospitals. The nurses registered whether data was found in de EHRs about quality indicators for end-of-life care. This concerned: symptoms (pain, shortness of breath, anxiety, depressive symptoms), spiritual and psychological support and advance care planning. Multilevel regression analyses were performed to assess differences between patients who had been admitted for palliative/terminal care and patients admitted for other reasons. Results Common end-of-life symptoms were rarely measured using a standardized method (e.g. Numeric Rating Scale, Visual Analogue Scale or Utrecht Symptom Diary). The symptom burden of pain was measured using a standardized method more often (63.3%) than the symptom burden of shortness of breath (2.2%), anxiety (0.5%) and depressive symptoms (0.3%). Similarly, little information was documented in the EHRs regarding wish to involve a spiritual counsellor, psychologist or social worker. Life expectancy was documented in 66%. The preferred place of death was documented less often (20%). The documentation of some quality indicators differed between patients who were admitted for palliative/terminal care compared to other patients. Conclusion Except for the burden of pain, symptoms are rarely measured with standardized methods in patients who died in Dutch Hospitals. This study underlines the importance of documenting information about symptom burden and aspects related to advance care planning, and spiritual and psychological support to improve the quality of end-of-life care for patients in hospitals. Furthermore, uniformity in measuring methods improves the possibility to compare results between patient groups and settings.

Abstract Background Home care nurses provide complex palliative care for patients who want to die in their own homes. This study aimed to explore home care nurses’ facilitation of planned home death to better understand nursing practices. Methods Data were collected between March 2019 and March 2020 using participant observations and semi-structured interviews. In addition, the number of planned home deaths was recorded. The analysis was guided by Roper and Shapira`s framework on focused ethnography. Results Twenty home care nurses (three men) in eight home care areas in two Norwegian municipalities met the inclusion criteria. Eight home deaths were registered, seven participatory observations were performed, and 20 semi-structured interviews were completed. Home care nurses find facilitating planned home deaths to be rewarding work, to the point of going above and beyond. At the same time, they describe facilitating planned home deaths as demanding work due to organizational stressors such as staff shortages, heavy workloads, and time restraints. While they tend to patients’ needs, they also express concern for the wellbeing of the next of kin. They find it challenging to juggle the needs of the patients with the needs of next of kin, as these are not always correlated. Conclusion Home care nurses are pushing the boundaries of their practice when facilitating planned home deaths while compensating for a fragile system by going above and beyond for patients and their next of kin. Providing insights into the work of home care nurses providing palliative care in patients’ homes can impact recruiting and retaining nurses in the workforce and influence local practices and policies.

Abstract Objectives New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. Design Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). Participants One hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached). Results Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not ‘routinely discussed in multi-disciplinary team or other meetings. Conclusions Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations.

Abstract Objectives In response to COVID-19’s first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. Methods Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. Results Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. Conclusion This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.

Abstract Background Many people living with cancer are admitted as an emergency, some just prior to diagnosis and others in their last year of life. Factors associated with accessing emergency care for people dying of cancer are complex and not well understood. This can make it difficult to have the resources and staffing in place to best care for individuals in their last year of life and their families. Methods This study uses routinely collected administrative data from people who died of cancer in N. Ireland (NI) during 2015 and explores how personal characteristics (e.g., gender, age) and disease related factors (e.g., tumour site, cancer stage at initial diagnosis) were associated with having an emergency admission to hospital in the last year and the last 28 days of their lives, using multivariate logistic regression. Results Almost three in four people had at least one emergency admission in the last year of life, and over one in three had an emergency admission the last 28 days of life. Patterns were similar for both time outcomes with males, people with haematological, lung or brain cancers, younger persons, those diagnosed with late-stage cancer, and people diagnosed close to time of death, being significantly more likely to have an emergency admission. While there was no significant association between deprivation and emergency admission rates, those living in urban areas were more likely to have an emergency admission in their last month of life compared to rural dwellers. Late diagnosis was evident with 538 people (12.8% of all deaths from cancer) being diagnosed within one month of death and 1242 (29%) within 3 months of death. Conclusion The high level of emergency admissions points to gaps in routine end-of-life care, and the need for additional training for hospital staff including frontline emergency department (ED) staff who are often the ‘gatekeepers’ to emergency inpatient care for people living with cancer. The levels of late diagnosis indicate a need for increased population awareness of cancer symptoms and system change to promote earlier diagnosis.

Abstract 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 This study suggests that palliative care education for undergraduate nursing students benefits from teaching in smaller groups with room for discussion and reflection. Furthermore, gains are described relating to educators taking the role of facilitators rather than traditional lecturers, being flexible and ready to address students’ emotions. Educators also draw on their experiences as palliative care nurses in their teaching practices.

Abstract Introduction Achieving good death is among the objectives of palliative care in patients with cancer. There should be an instrument for evaluating the quality of palliative care provided by family members at the end of life. This study was done to assess the psychometric properties of good death inventory- short form according to the perspective of family of patients with cancer. Method This methodological study was done in 2022 at two hospitals in Tehran. The translation was done via forward-backward method. Face validity was examined through cognitive interviewing with 10 family members. The content validation, were used by assessment the opinions of 10 palliative care specialists. The construct validity was explored through exploratory factor analysis and examination of convergent validation with care evaluation scale 2.0, as well as inspection of correlation by answering two general questions of satisfaction with treatment and end of life quality of life. The scale’s reliability, internal consistency was calculated using Cronbach’s alpha coefficient and stability via test-retest. Results Overall, 204 family members of patients with cancer were included. In the exploratory factor analysis, three factors of peace, hope, and value as well as quality of care were extracted with cumulative variance of 41.8%.A significant and suitable correlation between the total scores of the participants Good death inventory-short form and care evaluation scale2.0 (r = 0.459, P

Background: A significant proportion of patients with incurable cancer receive systemic anticancer therapy (SACT) within their last 30 days of life (DOL). The treatment has questionable benefit, nevertheless is considered a quality indicator of end-of-life (EOL) care. This retrospective cohort study aims to investigate the rates and potential predictors of SACT and factors associated with SACT within the last 30 DOL. The study also evaluates the scope of Eastern Cooperative Oncology Group (ECOG) performance status and the modified Glasgow prognostic score (mGPS) as decision-making tools for oncologists. Patients and Material: This review of medical records included 383 patients with non-curable cancer who died between July 2018 and December 2019. Descriptive statistics with Chi-squared tests and regression analysis were used to identify factors associated with SACT within the last 30 DOL. Results: Fifty-seven (15%) patients received SACT within the last 30 DOL. SACT within 30 last DOL was associated with shorter time from diagnosis until death (median 234 days vs. 482, p = 0.008) and ECOG score

The article examines a corpus of palliative care interactions recorded in a large UK hospice. It focuses on a collection of patient possible allusions to disease progression and end of life and examines their companions’ (i.e., accompanying family members and friends) subsequent actions. These actions implement various interactional projects that are coherent with the sequence of actions and broader activity underway. They share the outcome that they steer the interaction away from the possibility of immediately elaborating on the patient’s allusion, and of making matters related to disease progression or end of life explicit (despite these being relevant possibilities).

BackgroundCancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member’s illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes.MethodThis study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving.ResultsThe findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden).ConclusionThe results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.

Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants' ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between patients and their family caregivers. Although some patients may welcome the chance to engage in ACP a tendency towards either therapeutic optimism or fatalism can limit its perceived appeal or benefit. The focus on individual autonomy as an ethical principle underlying ACP does not resonate with real world settings. Many patients naturally orient to share responsibility and decision making within the network of significant others in which they are embedded, rather than exert unfettered freedom of 'choice'. [ABSTRACT FROM AUTHOR]

Background: Previous studies have noted that participation in advanced care planning (ACP) and end-of-life (EOL) discussions remain low among Latino communities. Various studies have found that interventions within Latino communities can positively improve engagement in ACP, however, minimal research exists regarding patient satisfaction of ACP discussions with healthcare providers outside of preorganized educational interventions. Our study aims to understand how conversations about ACP are perceived by Latino patients in a primary care setting. Methods: Subjects were identified from the institution's family medicine clinic from October 2021 to October 2022. Participants were those over the age of 50 who identified as Latino and were available at the clinic on the day of survey administration. An 8-question, 5-point, Likert scale survey assessed perceptions about ACP planning and gauged satisfaction of conversations with health care providers. The survey concluded with a multiple-choice question inquiring about individuals whom patients have spoken to regarding ACP/EOL wishes. Survey data was gathered through Qualtrics. Results: Of the 33 patients, the majority have at least somewhat thought about their EOL wishes (avg = 3.48/5). Most usually felt they were given enough time with their doctor (avg = 4.12/5) and comfortable speaking about ACP and EOL decisions (avg = 4.55/5). Generally, participants felt somewhat happy with how their doctor has spoken about ACP/EOL care (avg = 3.24/5). However, patients only felt a little to somewhat satisfied with the explanation of ACP/EOL from providers (avg = 2.82/5) and a little to somewhat confident in having the proper forms in place (avg = 2.76/5). Religious officials were a little to somewhat important to these conversations (avg = 2.55/5). Overall, patients have discussed ACP more frequently with family members and friends than health care providers, lawyers, or religious leaders. Conclusions: The initial data demonstrates that many Latino patients are engaging in ACP conversations, both with healthcare providers and loved ones. Patients largely feel comfortable discussing EOL wishes with their doctor suggesting a trustful relationship. However, patients are only somewhat happy with these ACP conversations. Our study highlights a need for enhanced ACP education to improve satisfaction and confidence in formal documentation. Physicians should continue to engage and individualize ACP discussions to increase EOL preparedness among Latino patients. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise the benefits of service user involvement in healthcare education for learning and practice • To understand how grief and bereavement can affect the parents of children in palliative care services • To identify the need to develop meaningful partnerships between academics and service users to achieve authentic, person-centred healthcare education Children's nurses report feeling unprepared when caring for children with life-limiting conditions and their families, while the value of including service users in the provision of nursing education is increasingly recognised. This small-scale service evaluation examined the effect on learning of service user-led workshops as part of a module for final-year children's nursing students and post-registration children's nurses. The workshops focused on the experience of children's palliative care and child bereavement from the parents' perspective. Findings from evaluation data indicated high levels of satisfaction with the workshops and identified three themes: safe space, shift in perspective and enhancing practice. A model of service user facilitated learning describes how these themes can enable learning about children's palliative care. This evaluation suggests that the involvement of service users as partners in healthcare education can be transformative, enabling children's nursing students to examine their own perspectives and consider ways to enhance their future practice. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To gain insight into caring for people at the end of life in the emergency department • To enhance your understanding of the concept of a good death • To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) The focus of care in the emergency department (ED) is on saving or sustaining life, but some patients admitted to the ED die in the ED. Nurses whose focus is on saving lives may therefore find themselves providing end of life care to patients and their families in a stressful and distressing environment. Providing optimal end of life care involves reflecting on what a good death looks like and how patients can be supported to have a good death. This article describes the barriers to optimal end of life care in the ED and prompts nurses to think about how they can enhance their practice when caring for dying patients and their families. [ABSTRACT FROM AUTHOR]

Background: Given the increasing demand for palliative and end-of-life care, along with the introduction of costly new treatments, there is a pressing need for robust evidence on value. However, comprehensive guidance is missing on methods for conducting economic evaluations in this field. Aim: To identify and summarise existing information on methodological challenges and potential solutions/recommendations for economic evaluations of palliative and end-of-life care. Design: We conducted a systematic review of publications on methodological considerations for economic evaluations of adult palliative and end-of-life care as per our PROSPERO protocol CRD42020148160. Following initial searches, we conducted a two-stage screening process and quality appraisal. Information was thematically synthesised, coded, categorised into common themes and aligned with the items specified in the Consolidated Health Economic Evaluation Reporting Standards statement. Data sources: The databases Medline, Embase, HTADatabase, NHSEED and grey literature were searched between 1 January 1999 and 5 June 2023. Results: Out of the initial 6502 studies, 81 were deemed eligible. Identified challenges could be grouped into nine themes: ambiguous and inaccurate patient identification, restricted generalisability due to poor geographic transferability of evidence, narrow costing perspective applied, difficulties defining comparators, consequences of applied time horizon, ambiguity in the selection of outcomes, challenged outcome measurement, non-standardised measurement and valuation of costs as well as challenges regarding a reliable preference-based outcome valuation. Conclusion: Our review offers a comprehensive context-specific overview of methodological considerations for economic evaluations of palliative and end-of-life care. It also identifies the main knowledge gaps to help prioritise future methodological research specifically for this field. [ABSTRACT FROM AUTHOR]

Background: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. Objective: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. Methods: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. Results: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. Conclusions: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally. [ABSTRACT FROM AUTHOR]

Introduction: Deaths in care homes and "at home" are anticipated to account for a third of UK deaths by 2040. Currently, palliative and end of life care are not part of statutory training in care homes. Reflective practice is a tool that can facilitate practice‐based learning and support. Following a feasibly study to test "online" supportive conversations and reflection sessions (OSCaRS) to support care home staff in relation to death/dying during the first months of the COVID pandemic, a one‐year practice development follow‐up project was undertaken with the aim to create a team of NHS/specialist palliative care (SPC)‐based facilitators to lead and support OSCaRS provision in up to 50 care homes in one region in Scotland—the focus of this paper. Methods: Forty care home managers attended an on‐line session explaining the project, with a similar session held for 19 NHS/SPC‐based nurses external to care homes. Those interested in facilitating OSCaRS then attended three education sessions. Data collected: records of all activities; reflective notes on OSCaRS organised/delivered; a summary of each OSCaRS reflection/learning points; final interviews with NHS/SPC trainee facilitators. Results: A total of 19 NHS/SPC facilitators delivered one or more OSCaRS in 22 participating care homes. However, as of January 2022 only six trained facilitators remained active. Out of the 158 OSCaRS arranged, 96 took place with a total of 262 staff attending. There were three important aspects that emerged: the role, remit, and resources of NHS/SPC supporting OSCaRS; requirements within care homes for establishing OSCaRS; and, the practice‐based learning topics discussed at each OSCaRS. Conclusion: Attempts to establish a team of NHS/SPC facilitators to lead OSCaRS highlights that end of life care education in care homes does not clearly fall within the contractual remit of either group or risks being missed due to more pressing priorities. [ABSTRACT FROM AUTHOR]

Background: A significant proportion of patients with incurable cancer receive systemic anticancer therapy (SACT) within their last 30 days of life (DOL). The treatment has questionable benefit, nevertheless is considered a quality indicator of end-of-life (EOL) care. This retrospective cohort study aims to investigate the rates and potential predictors of SACT and factors associated with SACT within the last 30 DOL. The study also evaluates the scope of Eastern Cooperative Oncology Group (ECOG) performance status and the modified Glasgow prognostic score (mGPS) as decision-making tools for oncologists. Patients and Material: This review of medical records included 383 patients with non-curable cancer who died between July 2018 and December 2019. Descriptive statistics with Chi-squared tests and regression analysis were used to identify factors associated with SACT within the last 30 DOL. Results: Fifty-seven (15%) patients received SACT within the last 30 DOL. SACT within 30 last DOL was associated with shorter time from diagnosis until death (median 234 days vs. 482, p = 0.008) and ECOG score < 3 30 days prior to death (p = 0.001). Patients receiving SACT during the last 30 DOL were more likely to be hospitalised and die in hospital. ECOG and mGPS score were stated at start last line of treatment only in 139 (51%) and 135 (49%) respectively. Interpretation: Those with short time since diagnosis tended to receive SACT more frequently the last 30 DOL. The use of mGPS as a decision-making tool is modest, and there is lack in documentation of performance status. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise the challenges in breaking bad news to people with learning disabilities • To consider various tools that you could use in your practice to break bad news • To count towards revalidation as part of your 35 hours of CPD, or you may wish to write a reflective account (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers) Breaking bad news is a challenging aspect of healthcare professionals' roles in any setting. In learning disability settings, specific challenges compound the difficulty of this task. For example, a person who has cognitive difficulties may not understand an abstract concept such as death; the person's family may be concerned that hearing bad news will be too distressing for them; or the healthcare professional may be reluctant to talk about death because of their own beliefs and values. This article discusses the barriers related to breaking bad news to people with learning disabilities. It also describes several tools – generic and specific to the learning disability field – which healthcare professionals can use to inform and improve their practice in this area. [ABSTRACT FROM AUTHOR]

Background: The prescribing of injectable end-of-life anticipatory medications ahead of possible need is recommended best practice. The financial costs of these medications have been little studied. Aim: To identify the costs of anticipatory medications prescribed, used and not used for patients approaching the end-of-life at home and in residential care. Design: Retrospective observational study using general practitioner and community nursing clinical records. Setting/participants: Data were collected from eleven general practitioner practices using the records of the 30 most recent deaths per practice. Patients were aged 18+ and died between 2017 and 2019 from any cause except trauma, sudden death or suicide. Results: Anticipatory medications were prescribed to 167/329 patients, of which 164 were included in the analysis. Costs (GBP) were analysed both at patient-level and drug-level. Median anticipatory prescription cost was £43.17 (IQR: £38.98–£60.47, range £8.76–£229.82). Median administered (used) drug cost was £2.16 (IQR: £0.00–£12.09, range £0.00–£83.14). Median unused (wasted) drug cost was £41.47 (IQR: £29.15–£54.33, range £0.00–£195.36). Prescription, administered and unused costs were significantly higher for the 59 patients prescribed an anticipatory syringe driver. There were wide variations in the unused costs of individual drugs; Haloperidol and Cyclizine contributed 49% of total unused costs. Conclusion: The costs of prescribed and unused anticipatory medications were higher than previously reported but remain modest. Usage of prescriptions was lower than previously documented. There may be scope to reduce the quantity of vials that are routinely prescribed without adversely affecting care; further research is needed to investigate this possibility. [ABSTRACT FROM AUTHOR]

Abstract Background Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Methods Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Results Three main themes were identified: one standalone theme (“Communication during end-of-life care”); and two overarching themes (“Getting end-of-life services and staff in the right place”, with two themes: “Access to, and staffing of end-of-life care” and “Inconsistent and insufficient funding for end-of-life care services”; and “Linking up healthcare provision”, with three sub-themes: “Coordination successes”, “Role of the networks”, and “Coordination challenges”). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusions Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals’ experiences of delivering care, and families’ experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.

Abstract Background COVID-19 could lead to hospitalisation and ICU admission, especially in older adults. Therefore, during the pandemic, it became more important to discuss wishes and preferences, such as older peoples’ desire for intensive treatment in a hospital in acute situations, or not. This study explores what percentage of Dutch older people aged 75 and over discussed Advance Care Planning (ACP) topics with a physician during the first months of the COVID-19 pandemic and whether this was different in these people before the COVID-19 pandemic. Methods Data of two ancillary data collections of the Longitudinal Aging Study Amsterdam were used: the LASA 75 PLUS study and the LASA COVID-19 study. The latter provided cross sectional data (during COVID-19; n = 428) and longitudinal data came from participants in both studies (before and during COVID-19; n = 219). Results Most older adults had thought about ACP topics during COVID-19 (76,4%), and a minority had also discussed ACP topics with a physician (20.3%). Thinking about ACP topics increased during COVID-19 compared to before COVID-19 in a sample with measurements on both timeframes (82,5% vs 68,0%). Not thinking about ACP topics decreased in the first months of the COVID-pandemic compared to before COVID-19 for all ACP topics together (68.0% vs 82.2%) and each topic separately (hospital 42.0% vs 63.9%; nursing home 36.5% vs 53.3%; treatment options 47.0% vs 62.1%; resuscitation 53.0% vs 70.7%). Conclusions Older people do think about ACP topics, which is an important first step in ACP, and this has increased during COVID-19. However, discussing ACP topics with a physician is still not that common. General practitioners could therefore take the initiative in broaching the subject of ACP. This can for instance be done by organizing information meetings.

Abstract Background Since 2015, the Ambitions for Palliative and End of Life Care: a national framework for local action has provided guidance for care within England and beyond. Relaunched in 2021, the Framework sets out six Ambitions which, collectively, provide a vision to improve how death, dying and bereavement are experienced and managed. However, to date, there has been no central evaluation of how the Framework and its Ambitions have been implemented within service development and provision. To address this evidence gap, we investigated understanding and use of the Framework. Methods An online questionnaire survey was conducted to identify where the Framework has been used; examples of how it has been used; which Ambitions are being addressed; which foundations are being used; understanding of the utility of the Framework; and understanding of the opportunities and challenges involved in its use. The survey was open between 30 November 2021–31 January 2022, promoted via email, social media, professional newsletter and snowball sampling. Survey responses were analysed both descriptively, using frequency and cross-tabulations, and exploratively, using content and thematic analysis. Results 45 respondents submitted data; 86% were from England. Findings indicate that the Framework is particularly relevant to service commissioning and development across wider palliative and end of life care, with most respondents reporting a focus on Ambition 1 (Each person is seen as an individual) and Ambition 3 (Maximising comfort and wellbeing). Ambition 6 (Each community is prepared to help) was least likely to be prioritised, despite people welcoming the focus on community in national guidance. Of the Framework foundations, ‘Education and training’ was seen as most necessary to develop and/or sustain reported services. The provision of a shared language and collaborative work across sectors and partners were also deemed important. However, there is some indication that the Framework must give more prioritisation to carer and/or bereavement support, have greater scope to enhance shared practice and mutual learning, and be more easily accessible to non-NHS partners. Conclusions The survey generated valuable summary level evidence on uptake of the Framework across England, offering important insights into current and past work, the factors impacting on this work and the implications for future development of the Framework. Our findings suggest considerable positive potential of the Framework to generate local action as intended, although difficulties remain concerning the mechanisms and resources necessary to enact this action. They also offer a valuable steer for research to further understand the issues raised, as well as scope for additional policy and implementation activity.

The article discusses the complexities faced by infectious diseases physicians in navigating the use of antimicrobials at the end of life, emphasizing the importance of patient-centered care, shared decision making, and antimicrobial stewardship. Topics include challenges in managing recurrent infections in patients with advanced cancer, strategies for engaging in difficult conversations with patients and their families, and the ethical concerns encountered by physicians in these situations.

Objectives: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. Methods: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. Results: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. Conclusion: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care. [ABSTRACT FROM AUTHOR]

Care for the sick, including spiritual support is sometimes called holistic medicine. The term bio-psycho-social-spiritual model is sometimes used to describe this type of therapeutic approach patient-oriented medicine. This report indicates the importance of taking into account the spiritual aspect of life due to its beneficial impact on the coping resources activated and the patient's well-being. Existential and spiritual issues are on the verge of new clinical and research interest in medicine, especially in gerontology, oncology, and palliative care. Clinicians focus not only on symptom control but also on spiritual and existential issues such as spirituality, hope, and meaning. This paper reviews the topic of spirituality in the context of illness and end-of-life care trying to define spirituality within the context of health resources of the subject. Spirituality is perceived in two of its main components: faith/religious beliefs and spiritual well-being. Especially this second construct is reviewed and described as a health resource. [ABSTRACT FROM AUTHOR]

Background: Home care nurses provide complex palliative care for patients who want to die in their own homes. This study aimed to explore home care nurses' facilitation of planned home death to better understand nursing practices. Methods: Data were collected between March 2019 and March 2020 using participant observations and semi-structured interviews. In addition, the number of planned home deaths was recorded. The analysis was guided by Roper and Shapira's framework on focused ethnography. Results: Twenty home care nurses (three men) in eight home care areas in two Norwegian municipalities met the inclusion criteria. Eight home deaths were registered, seven participatory observations were performed, and 20 semi-structured interviews were completed. Home care nurses find facilitating planned home deaths to be rewarding work, to the point of going above and beyond. At the same time, they describe facilitating planned home deaths as demanding work due to organizational stressors such as staff shortages, heavy workloads, and time restraints. While they tend to patients' needs, they also express concern for the wellbeing of the next of kin. They find it challenging to juggle the needs of the patients with the needs of next of kin, as these are not always correlated. Conclusion: Home care nurses are pushing the boundaries of their practice when facilitating planned home deaths while compensating for a fragile system by going above and beyond for patients and their next of kin. Providing insights into the work of home care nurses providing palliative care in patients' homes can impact recruiting and retaining nurses in the workforce and influence local practices and policies. [ABSTRACT FROM AUTHOR]

Background: Quality of care at the end of life in hospitals is often perceived to be lower compared to the care that is provided to people who die in their own home. Documenting and measuring indicators of common end-of-life symptoms could help improve end-of-life care in hospitals. This study provided insight into quality indicators for the end-of-life care of patients who died in a Dutch hospital, and assessed differences between deceased patients who were admitted for palliative/terminal care versus patients admitted for other reasons. Methods: In a retrospective record review study, trained nurses reviewed electronic health records (EHRs) of patients who died in 2019 (n = 2998), in a stratified sample of 20 Dutch hospitals. The nurses registered whether data was found in de EHRs about quality indicators for end-of-life care. This concerned: symptoms (pain, shortness of breath, anxiety, depressive symptoms), spiritual and psychological support and advance care planning. Multilevel regression analyses were performed to assess differences between patients who had been admitted for palliative/terminal care and patients admitted for other reasons. Results: Common end-of-life symptoms were rarely measured using a standardized method (e.g. Numeric Rating Scale, Visual Analogue Scale or Utrecht Symptom Diary). The symptom burden of pain was measured using a standardized method more often (63.3%) than the symptom burden of shortness of breath (2.2%), anxiety (0.5%) and depressive symptoms (0.3%). Similarly, little information was documented in the EHRs regarding wish to involve a spiritual counsellor, psychologist or social worker. Life expectancy was documented in 66%. The preferred place of death was documented less often (20%). The documentation of some quality indicators differed between patients who were admitted for palliative/terminal care compared to other patients. Conclusion: Except for the burden of pain, symptoms are rarely measured with standardized methods in patients who died in Dutch Hospitals. This study underlines the importance of documenting information about symptom burden and aspects related to advance care planning, and spiritual and psychological support to improve the quality of end-of-life care for patients in hospitals. Furthermore, uniformity in measuring methods improves the possibility to compare results between patient groups and settings. [ABSTRACT FROM AUTHOR]

Objectives: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care–Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. Design: Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). Participants: One hundred fifty-six participants completed (63% HC; 37% HPC—8% response rate, of n = 1894 approached). Results: Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not 'routinely discussed in multi-disciplinary team or other meetings. Conclusions: Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations. [ABSTRACT FROM AUTHOR]

Background: Cancer remains a leading cause of mortality worldwide. While the main focus of palliative care (PC) is quality of life, the elements that comprise the quality of death are often overlooked. Dying at home, with home-hospice-care (HHC) support, rather than in-hospital, may increase patient satisfaction and decrease the use of invasive measures. We examined clinical and demographic characteristics associated with out-of-hospital death among patients with cancer, which serves as a proxy measure for HHC deaths. Methods: Using death certification data from the Israel Central Bureau of Statistics, we analyzed 209,158 cancer deaths between 1998 and 2018 in Israel including demographic information, cause of death, and place of death (POD). A multiple logistic regression model was constructed to identify factors associated with out-of-hospital cancer deaths. Results: Between 1998 and 2018, 69.1% of cancer deaths occurred in-hospital, and 30.8% out-of-hospital. Out-of-hospital deaths increased by 1% annually during the study period. Older patients and those dying of solid malignancies were more likely to die out-of-hospital (OR = 2.65, OR = 1.93, respectively). Likelihood of dying out-of-hospital varied with area of residency; patients living in the Southern district were more likely than those in the Jerusalem district to die out-of-hospital (OR = 2.37). Conclusion: The proportion of cancer deaths occurring out-of-hospital increased during the study period. We identified clinical and demographic factors associated with POD. Differences between geographical areas probably stem from disparity in the distribution of PC services and highlight the need for increasing access to primary EOL care. However, differences in age and tumor type probably reflect cultural changes and suggest focusing on educating patients, families, and physicians on the benefits of PC. Spending the last days of life at home has been shown to be associated with less invasive measures and better quality of life at such a critical time. This study identified factors associated with increased likelihood of home death among cancer patients. [ABSTRACT FROM AUTHOR]

COVID-19 pandemic has impacted the families of patients in Palliative Care Units because of the visitor restrictions which were introduced to reduce the risk of infection. This study investigates how the bereaved families of the patients who died in end-of-life care during the pandemic evaluate the visitor restrictions and how the lack of direct communication with the patient affected them. We conducted a quantitative survey using an anonymous self-administered questionnaire. Participants were the bereaved families of patients who died in a Palliative Care Unit from April 2020 to March 2021. Their perspectives on the negative impact of COVID-19 pandemic on visitations, visitor restrictions, the quality of medical care in the month before the death of the patient, and online visitations were recorded in the survey. The results show that most participants experienced a negative impact on visitations. However, most respondents felt that the restrictions were unavoidable. According to visitor permissions in patients' last days, bereaved families were satisfied with the medical care provided for the patient and the amount of time spent with the patient in his/her last days. The importance of direct meetings during the last days of the patients' life for their family members was presented. We suggest further research to find measures which enable visitation in palliative care units, as caregiving from family and friends and maintaining COVID safety regulations are equally significant in end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Many people living with cancer are admitted as an emergency, some just prior to diagnosis and others in their last year of life. Factors associated with accessing emergency care for people dying of cancer are complex and not well understood. This can make it difficult to have the resources and staffing in place to best care for individuals in their last year of life and their families. Methods: This study uses routinely collected administrative data from people who died of cancer in N. Ireland (NI) during 2015 and explores how personal characteristics (e.g., gender, age) and disease related factors (e.g., tumour site, cancer stage at initial diagnosis) were associated with having an emergency admission to hospital in the last year and the last 28 days of their lives, using multivariate logistic regression. Results: Almost three in four people had at least one emergency admission in the last year of life, and over one in three had an emergency admission the last 28 days of life. Patterns were similar for both time outcomes with males, people with haematological, lung or brain cancers, younger persons, those diagnosed with late-stage cancer, and people diagnosed close to time of death, being significantly more likely to have an emergency admission. While there was no significant association between deprivation and emergency admission rates, those living in urban areas were more likely to have an emergency admission in their last month of life compared to rural dwellers. Late diagnosis was evident with 538 people (12.8% of all deaths from cancer) being diagnosed within one month of death and 1242 (29%) within 3 months of death. Conclusion: The high level of emergency admissions points to gaps in routine end-of-life care, and the need for additional training for hospital staff including frontline emergency department (ED) staff who are often the ‘gatekeepers’ to emergency inpatient care for people living with cancer. The levels of late diagnosis indicate a need for increased population awareness of cancer symptoms and system change to promote earlier diagnosis. [ABSTRACT FROM AUTHOR]

Background: To achieve sustainable development goal 3.8, countries must prioritise the provision of palliative care. We aimed to estimate the prevalence of palliative care needs in India. Methods: A systematic literature search was conducted in databases of PubMed, Cochrane, Embase, Web of Science, and EBSCO Host. We included community-based studies published in English between inception and April 30, 2023. We excluded hospital-based studies that were conducted solely including diseased patients. Data were extracted independently, and a quality assessment was performed. To estimate the pooled prevalence and 95% confidence intervals (CI), we used the random-effects model. Heterogeneity was assessed using the Q statistic and I2 test. Subgroup analyses were conducted based on the study site, urban--rural distribution, gender, and age groups. Publication bias was evaluated using a funnel plot and Egger test. STATA software was used for data analysis. Results: Out of the 2632 articles identified, 8 cross-sectional studies were included. Using the random-effects model, the pooled estimate of palliative care needs was found to be 6.21/1000 population (95% CI: 2.42--11.64). The southern region showed a prevalence of 10.83/1000 compared to 2.24/1000 in the northern region. Urban areas had a prevalence of 3.34/1000, while rural areas had a prevalence of 7.69/1000. Among females, the prevalence was 9.64/1000, compared to 6.77/1000 among males. Notably, individuals aged over 60 years had a higher prevalence of palliative care needs, with a rate of 37.86/1000 population. Conclusion: This systematic review and meta-analysis highlight a substantial need for palliative care in India, with a prevalence of 6.21 individuals/1000 population. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise that children with complex care needs are at increased risk of developing serious illness which could lead to sepsis • To be aware of a bespoke virtual learning education programme on the care of the acutely unwell child for community palliative healthcare professionals • To identify the need for hospices and community palliative care services to share resources and ensure evidence-based practice for acutely unwell children Children with complex care needs are at an increased risk of developing serious illness which could lead to sepsis. Many children receiving palliative care do not have a completed advance care plan identifying their wishes for ongoing care, which means they would require active intervention if they were to become acutely unwell. Sepsis is the immune system's overreaction to an infection or injury and about 25,000 children are admitted to hospital with sepsis in the UK each year. Early recognition of the acutely unwell child and escalation of concerns from the community to an acute care setting is required to manage and treat a child who is deteriorating. This article describes a project of three phases which aimed to explore the assessment tools available to support recognition and screening of children who became acutely unwell while accessing community palliative care services. It also identifies the importance of working together in partnership with external organisations and acknowledges the achievements of all of the partners involved. [ABSTRACT FROM AUTHOR]

Background: Clinician predicted survival for cancer patients is often inaccurate, and prognostic tools may be helpful, such as the Palliative Prognostic Index (PPI). The PPI development study reported that when PPI score is greater than 6, it predicted survival of less than 3 weeks with a sensitivity of 83% and specificity of 85%. When PPI score is greater than 4, it predicts survival of less than 6 weeks with a sensitivity of 79% and specificity of 77%. However, subsequent PPI validation studies have evaluated various thresholds and survival durations, and it is unclear which is most appropriate for use in clinical practice. With the development of numerous prognostic tools, it is also unclear which is most accurate and feasible for use in multiple care settings. Aim: We evaluated PPI model performance in predicting survival of adult cancer patients based on different thresholds and survival durations and compared it to other prognostic tools. Design: This systematic review and meta-analysis was registered in PROSPERO (CRD42022302679). We calculated the pooled sensitivity and specificity of each threshold using bivariate random-effects meta-analysis and pooled diagnostic odds ratio of each survival duration using hierarchical summary receiver operating characteristic model. Meta-regression and subgroup analysis were used to compare PPI performance with clinician predicted survival and other prognostic tools. Findings which could not be included in meta-analyses were summarised narratively. Data sources: PubMed, ScienceDirect, Web of Science, CINAHL, ProQuest and Google Scholar were searched for articles published from inception till 7 January 2022. Both retrospective and prospective observational studies evaluating PPI performance in predicting survival of adult cancer patients in any setting were included. The Prediction Model Risk of Bias Assessment Tool was used for quality appraisal. Results: Thirty-nine studies evaluating PPI performance in predicting survival of adult cancer patients were included (n = 19,714 patients). Across meta-analyses of 12 PPI score thresholds and survival durations, we found that PPI was most accurate for predicting survival of <3 weeks and <6 weeks. Survival prediction of <3 weeks was most accurate when PPI score>6 (pooled sensitivity = 0.68, 95% CI 0.60–0.75, specificity = 0.80, 95% CI 0.75–0.85). Survival prediction of <6 weeks was most accurate when PPI score>4 (pooled sensitivity = 0.72, 95% CI 0.65–0.78, specificity = 0.74, 95% CI 0.66–0.80). Comparative meta-analyses found that PPI performed similarly to Delirium-Palliative Prognostic Score and Palliative Prognostic Score in predicting <3-week survival, but less accurately in <30-day survival prediction. However, Delirium-Palliative Prognostic Score and Palliative Prognostic Score only provide <30-day survival probabilities, and it is uncertain how this would be helpful for patients and clinicians. PPI also performed similarly to clinician predicted survival in predicting <30-day survival. However, these findings should be interpreted with caution as limited studies were available for comparative meta-analyses. Risk of bias was high for all studies, mainly due to poor reporting of statistical analyses. while there were low applicability concerns for most (38/39) studies. Conclusions: PPI score>6 should be used for <3-week survival prediction, and PPI score>4 for <6-week survival. PPI is easily scored and does not require invasive tests, and thus would be easily implemented in multiple care settings. Given the acceptable accuracy of PPI in predicting <3- and <6-week survival and its objective nature, it could be used to cross-check clinician predicted survival especially when clinicians have doubts about their own judgement, or when clinician estimates seem to be less reliable. Future studies should adhere to the reporting guidelines and provide comprehensive analyses of PPI model performance. [ABSTRACT FROM AUTHOR]

As cancer incidences are increasing, the means to provide effective palliative care (PC) are called for. There is evidence, that PC may prevent futile treatment at the end of life (EOL) thus implicating that PC decreases resource use at the EOL, however, the effects of outpatient PC units remain largely unknown. We surveyed the national use of Finnish tertiary care PC units and their effects on resource use at the EOL in real-life environments. Cancer patients treated in the departments of Oncology at all five Finnish university hospitals in 2013 and deceased by 31 December 2014 were identified; of the 6010 patients 2007 were randomly selected for the study cohort. The oncologic therapies received and the resource usage of emergency services and hospital wards were collected from the hospitals' medical records. A PC unit was visited by 37% of the patients a median 112 days before death. A decision to terminate all life-prolonging cancer treatments was more often made for patients visiting the PC unit (90% vs. 66%, respectively). A visit to a PC unit was associated with significantly fewer visits to emergency departments (ED) and hospitalization during the last 90 days of life; the mean difference in ED visits decreased by 0.48 (SD 0.33 − 0.62, p < 0.001), and the mean inpatient days by 7.1 (SD 5.93 − 8.25, p < 0.001). A PC visit unit was independently associated with decreased acute hospital resource use during the last 30 and 90 days before death in multivariable analyses. Cancer patients' contact with a PC unit was significantly associated with the reduced use of acute hospital services at the EOL, however; only one-third of the patients visited a PC unit. Thus, systematic PC unit referral practices for patients with advanced cancer are called for. [ABSTRACT FROM AUTHOR]

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Introduction: Achieving good death is among the objectives of palliative care in patients with cancer. There should be an instrument for evaluating the quality of palliative care provided by family members at the end of life. This study was done to assess the psychometric properties of good death inventory- short form according to the perspective of family of patients with cancer. Method: This methodological study was done in 2022 at two hospitals in Tehran. The translation was done via forward-backward method. Face validity was examined through cognitive interviewing with 10 family members. The content validation, were used by assessment the opinions of 10 palliative care specialists. The construct validity was explored through exploratory factor analysis and examination of convergent validation with care evaluation scale 2.0, as well as inspection of correlation by answering two general questions of satisfaction with treatment and end of life quality of life. The scale's reliability, internal consistency was calculated using Cronbach's alpha coefficient and stability via test-retest. Results: Overall, 204 family members of patients with cancer were included. In the exploratory factor analysis, three factors of peace, hope, and value as well as quality of care were extracted with cumulative variance of 41.8%.A significant and suitable correlation between the total scores of the participants Good death inventory-short form and care evaluation scale2.0 (r = 0.459, P < 0.001) and general satisfaction with end-of-life care (r = 0.423, p < 0.001) as well as the patient's general quality of life (r = 0.539, p < 0.001). The Cronbach's alpha coefficient for the questionnaire was found 0.842, and the stability was confirmed with Intra cluster correlation coefficient = 0.851. Conclusion: the Persian version of good death inventory-short form is a valid and reliable questionnaire which can investigate the factors associated with good death according to patients' family members' perspective. [ABSTRACT FROM AUTHOR]

BackgroundThe 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs.MethodsUsing the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program.ResultsBeyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose.ConclusionsThe successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other.Trial registrationNCT04147169 , retrospectively registered with clinicaltrials.gov on October 31, 2019.

PurposeOnline programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics.MethodsWe undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement.ResultsIn total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations.ConclusionsImplementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.