Attitudes towards advance care planning amongst community-based older people in England.

BACKGROUND: Advance care planning has been advocated as a way for people to have their wishes recorded and respected in relation to types of treatment and place of care. However, uptake in England remains low. AIMS: To examine the views of older, well, adults towards Advance Care Plans (ACPs) and planning for end-of-life care, in order to inform national policy decisions. METHODS: A mixed methods approach was adopted, involving individual and mini-group qualitative interviews (n = 76, ages 45-85), followed by a quantitative survey (n = 2294, age 55+). The quantitative sample was based on quotas in age, gender, region, socio-economic grade, and ethnicity, combined with light weighting to ensure the findings were representative of England. RESULTS: Knowledge and understanding of advance care planning was low, with only 1% of survey respondents reporting they had completed an ACP for themselves. Common reasons for not putting wishes into writing were not wanting/needing to think about it now, the unpredictability of the future, trusting family/friends to make decisions, and financial resources limiting real choice. CONCLUSION: Whilst advance care planning is seen as a good idea in theory by older, well, adults living in the community, there is considerable reticence in practice. This raises questions over the current, national policy position in England, on the importance of written ACPs. We propose that policy should instead focus on encouraging ongoing conversations between individuals and all those (potentially) involved in their care, about what is important to them, and on ensuring there are adequate resources in community networks and health and social care systems, to be responsive to changing needs.

Flourishing at the end of life.

Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical assessment of wellbeing at the end of life and explore the possibility of introducing a flourishing measure in palliative care practice.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Did the Palliative Care Outcomes Collaboration (PCOC) program lead to improved end-of-life care quality and reduced non-beneficial treatments?

PURPOSE: Palliative Care Outcomes Collaboration (PCOC) is an internationally recognized program developed in Australia. Taiwan became the first country in Asia to implement PCOC in 2020. There is little research on the impact of PCOC in Asia. We sought to examine the effects of the Taiwan PCOC on palliative outcomes. METHODS: The study analyzed the impact of PCOC with a retrospective cohort design. The hypotheses were that PCOC could improve end-of-life care quality and reduce non-beneficial treatments. The study enrolled patients with terminal illnesses from the inpatient palliative care units. General characteristics of participants were collected. Exclusion criteria were people without a diagnosis of terminal illness, aged 20 and younger, or with missing data. RESULTS: The study collected 1,121 patients, 555 in the PCOC comparison group and 566 in the intervention group. Most patients were with terminal cancer (88.58%). The rates of hospital deaths in the PCOC and non-PCOC groups were 68.73% vs. 74.95% (P = 0.021). A multivariable logistic regression model, adjusting for age, sex, Charlson comorbidity index, and terminal cancer status, was utilized. The PCOC intervention significantly decreased hospital deaths (OR = 0.26, 95%CI 0. 16-0.41, P < 0.001). CONCLUSIONS: PCOC in Taiwan significantly reduced hospital deaths among terminal patients, possibly due to effective symptom management and improved communication via the use of patient-reported outcomes. Further research is needed to support PCOC implementation in Asia and investigate collaboration programs' impact on end-of-life care quality and non-beneficial treatments.

Does a palliative medicine service reduce hospital length of stay and costs in adults with a life-limiting illness?-a difference-in-differences evaluation of service expansion in Ireland.

BACKGROUND: People approaching end of life account disproportionately for health care costs, and the majority of these costs accrue in hospitals. The economic evidence base to improve value of care to this population is thin. Natural experiment methods may be helpful in bridging evidence gaps with credible causal estimates from routine data, but these methods have seldom been applied in this field. This study aimed to evaluate the association between timely palliative care consultation and length of stay for adults with serious illness admitted to acute hospital in Ireland. METHODS: In primary analysis we evaluated if timely palliative care receipt following emergency hospital inpatient admission impacted length of stay (LOS); in secondary analysis we verified if palliative medicine service (PMS) implementation co-occurred with any changes in in-hospital mortality, and we estimated cost differences associated with any change in LOS. This was a secondary analysis on routinely collected data for acute admissions to public hospitals in Ireland. We used difference-in-differences analysis to exploit the staggered implementation of PMS teams at acute public hospitals in Ireland between 2010 and 2015. We identified palliative care receipt following PMS implementation using ICD-10 codes, and we matched admissions involving a palliative care interaction to admissions in years prior to PMS implementation using propensity score weights. RESULTS: Our primary analytic sample included 4,314 observations, of whom 608 (14%) received timely palliative care. We estimated that the intervention reduced LOS by nearly two days, with an estimated associated saving per admission of €1,820. These analyses were robust to multiple sensitivity analyses on regression specification, weighting strategy and site selection. Proportion of admissions ending in death did not change following PMS implementation. CONCLUSIONS: Prompt interaction between suitable patients and palliative care can improve the quality and efficiency of care to this population. Many patients receive palliative care later in the hospital stay, which does not yield cost-savings. Future studies can extend and strengthen our approach with better data, as well as using different methods to understand how to trigger palliative care early in a hospital admission and realise available gains.

"I'm not an anxious person": end-of-life care workers constructing positive psychological states.

BACKGROUND: Mental health is an issue of social and economic importance. Sociocultural and scholarly attention has largely focused on the negative aspects of mental health. That is, on mental disorders and illness and how they adversely impact our lives. In contrast, this paper forms part of a recent alternative empirical perspective in discourse-based research, by focusing on the positive aspects of mental health. In this article, we investigate how end-of-life care workers construct their positive psychological states. METHODS: Our data are 38 audio-recorded and transcribed semi-structured interviews with end-of-life care workers from Hong Kong and the United Kingdom. We utilized thematic analysis to identify common categorial strands across the data and discourse analysis to identify the linguistic strategies that these interviewees used to talk about their mental health. RESULTS: Our thematic analysis generated a superordinate theme across the interviews-namely, that of end-of-life care workers talking about their positive psychological states. We identify three generic ways that end-of-life care workers talked about these psychological states; by "foregrounding the positive," "reformulating the negative," and "dismissing the negative." Our analysis also explicates how interviewees connected social and organizational support to being a benefit to their psychological states. CONCLUSIONS: Our work contributes to existing discourse-based and sociolinguistic research on mental health by turning their focus towards a consideration of its positive dimensions. We also identify recurrent linguistics strategies used by people to construct their mental health. Our analyses point to the importance of investigating mental health as a multidimensional concept that considers participants' own reflections on their mental health.

Factors Associated With the Initiation of Comfort-Focused Nutrition Care Orders for Long-Term Care Residents at End of Life.

BACKGROUND: Comfort-focused nutrition orders are recommended to manage eating changes among long-term care (LTC) residents nearing the end of life, though little is known about their current use. This investigation aims to describe current practices and identify resident-level and time-dependent factors associated with comfort-focused nutrition orders in this context. METHODS: Data were retrospectively extracted from resident charts of decedents (≥65 years at death, admitted ≥6 months) in 18 LTC homes from two sampling frames across southern Ontario, Canada. Observations occurred at 6 months (baseline), 3 months, 1 month and 2 weeks prior to death. Extracted data included functional measures (e.g. cognitive performance, health instability) at baseline, formalised restorative and comfort-focused nutrition care interventions at each timepoint and eating changes reported in the progress notes in 2 weeks following each timepoint. Logistic regression and time-varying logistic regression models determined resident-level (e.g. functional characteristics) and time-dependent factors (e.g. eating changes) associated with receiving a comfort-focused nutrition order. RESULTS: Less than one-third (30.5%; n = 50) of 164 participants (61.0% female; mean age = 88.3 ± 7.5 years) received a comfort-focused nutrition order, whereas most (99%) received at least one restorative nutrition intervention to support oral food intake. Discontinuation of nutrition interventions was rare (8.5%). Comfort orders were more likely with health instability (OR [95% CI] = 4.35 [1.49, 13.76]), within 2 weeks of death (OR = 5.50 [1.70, 17.11]), when an end-of-life conversation had occurred since the previous timepoint (OR = 5.66 [2.83, 11.33]), with discontinued nutrition interventions (OR = 6.31 [1.75, 22.72]), with co-occurrence of other care plan modifications (OR = 1.48 [1.10, 1.98]) and with a greater number of eating changes (OR = 1.19 [1.02, 1.38]), especially dysphagia (OR = 2.59 [1.09, 6.17]), at the preceding timepoint. CONCLUSIONS: Comfort-focused nutrition orders were initiated for less than one-third of decedents and most often in the end stages of life, possibly representing missed opportunities to support the quality of life for this vulnerable population. An increase in eating changes, including new dysphagia, may signal a need for proactive end-of-life conversations involving comfort nutrition care options. IMPLICATIONS FOR PRACTICE: Early and open conversations with residents and family about potential eating changes and comfort-focused nutrition care options should be encouraged and planned for among geriatric nursing teams working in LTC. These conversations may be beneficial even as early as resident admission to the home.

The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

INTRODUCTION: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals. RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. CONCLUSION: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.

Palliative Care for Refractory Depressive Symptoms in a Female Veteran Geriatric Patient.

AbstractPsychiatric treatment options, such as electroconvulsive therapy (ECT), can be lifesaving for individuals suffering from severe mental illness. For individuals who are unable to make or communicate their own medical decisions, this decision may fall on a legal guardian, who will make decisions on the patient's behalf. Here we discuss the considerations of end-of-life planning in a patient with severe mental illness under guardianship when treatment modalities, in this case ECT, are no longer effective.

Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.

BACKGROUND: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. AIM: To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. DESIGN: Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. METHOD: Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. RESULTS: Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. CONCLUSION: Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.

Physicians' experiences and perceptions about withholding and withdrawal life-sustaining treatment in Chiang Mai University Hospital: a cross-sectional study.

BACKGROUND: Withholding or withdrawing life-sustaining treatment in end-of-life patients is a challenging ethical issue faced by physicians. Understanding physicians' experiences and factors influencing their decisions can lead to improvement in end-of-life care. OBJECTIVES: To investigate the experiences of Thai physicians when making decisions regarding the withholding or withdrawal of life-sustaining treatments in end-of-life situations. Additionally, the study aims to assess the consensus among physicians regarding the factors that influence these decisions and to explore the influence of families or surrogates on the decision-making process of physicians, utilizing case-based surveys. METHODS: A web-based survey was conducted among physicians practicing in Chiang Mai University Hospital (June - October 2022). RESULTS: Among 251 physicians (response rate 38.3%), most of the respondents (60.6%) reported that they experienced withholding or withdrawal treatment in end-of-life patients. Factors that influence their decision-making include patient's preferences (100%), prognosis (93.4%), patients' quality of life (92.8%), treatment burden (89.5%), and families' request (87.5%). For a chronic disease with comatose condition, the majority of the physicians (47%) chose to continue treatments, including cardiopulmonary resuscitation (CPR). In contrast, only 2 physicians (0.8%) would do everything, in cases when families or surrogates insisted on stopping the treatment. This increased to 78.1% if the families insisted on continuing treatment. CONCLUSION: Withholding and withdrawal of life-sustaining treatments are common in Thailand. The key factors influencing their decision-making process included patient's preferences and medical conditions and families' requests. Effective communication and early engagement in advanced care planning between physicians, patients, and families empower them to align treatment choices with personal values.

[Can we learn to die?] / Sterben, kann man das lernen?

INTRODUCTION: The topic of death and the dying is a crucial aspect of patient care, especially for individuals with terminal illnesses. However, discussions about death and dying are often avoided during patient interactions. In this article, our aim is to explore the reasons behind our fear of death and dying and to assess the importance of addressing these issues in shaping and cultivating relationships with our patients and in our personal lives. We argue that being open to impermanence is a valuable tool in our work with patients and their families and should be integrated into conversations with them. Furthermore, discussions about death and dying should play a central role in medical and nursing education as well as professional development.

The Progression of End-of-Life Wishes and Concordance with End-of-Life Care: An Update.

Importance: Concordance between physician orders for life-sustaining treatment (POLST) preferences and treatment at end-of-life is an important outcome measure of providing patient-centered care. Objectives: We determine whether the COVID pandemic affected clinician ability to provide goal concordant care and replicate our previous report on care concordance and change in patient preferences over time with a larger sample size. We also investigate the quality of POLST completion to determine the number of documents completed with an advance care planning (ACP) conversation or a decision maker present. Methods: Chart abstraction via structured questionnaire of 796 randomly selected patients who died in 2020 with a POLST on file. Results: We found 99% concordance in the last setting of death between a patient's POLST preferences and the care they received. We confirm our previous finding that patients' wishes shift towards a preference for lower treatment intensity at end-of-life. We found that 82% of POLSTs were created in the context of an ACP conversation, 77% with a decision maker present. Conclusion: High levels of goal concordant care were maintained during the pandemic. Because patient wishes evolve over time, clinicians should be trained and supported to revisit care preferences across the illness trajectory.

Associations between palliative-care consultations and end-of-life quality in cancer patients' last 6 months.

PURPOSE: Improving end-of-life (EOL) quality for terminally ill cancer patients is crucial. However, associations between hospice/palliative care and EOL quality, as perceived by patients, are underreported. We aimed to examine the impact of palliative care consultative services on the EOL quality during cancer patients' last six months. METHODS: In this prospective, longitudinal study, 174 cancer patients were divided into a palliative care consultative services group (n = 65) or a non palliative care consultative services group (n = 109). The impact of palliative care consultative services on EOL quality, assessed using the Quality of Dying and Death (QODD) scale at the first and last assessments within the patients' last six months, was analyzed by linear regression with generalized estimating equations, adjusting for covariates. RESULTS: Cancer patients received palliative care consultative services a median of 34.0 days before death. There were significant main effects of groups, indicating that patients receiving palliative care consultative services had better QODD total scores (ß [95% confidence interval] = 2.12 [0.32,3.93], p = .021), death preparation (3.80 [1.71,5.89], p < .001), and treatment preferences than the reference group (3.27 [0.90,5.64], p = .007). No group differences were found in other dimensions, including symptom and personal care, whole person concern, and time with family. CONCLUSION: Palliative care consultative services significantly improved cancer patients' perceptions of death preparation, treatment preferences, and the QODD total score. Therefore, healthcare professionals should offer palliative care consultative services to cancer patients, initiate early referrals for such care, and implement effective and individualized interventions to enhance EOL quality.

Issues and implications of the life-sustaining treatment decision act: comparing the data from the survey and clinical data of inpatients at the end-of-life process.

BACKGROUND: Health professionals had difficulty choosing the right time to discuss life-sustaining treatments (LSTs) since the Korean Act was passed in 2018. OBJECTIVE: This study aimed to understand how patients decide to undergo LSTs in clinical practice and to compare the perceptions of these decisions among health professionals, patients, and families with suggestions to support the self-directed decisions of patients. RESEARCH DESIGN: A retrospective observational study with electronic medical records (EMRs) and a descriptive survey was used. METHODS: The data obtained from the EMRs included all adult patients who died in end-of-life care at a university hospital in 2021. We also conducted a survey of 214 health professionals and 100 patients and their families (CNUH IRB approval no. 2022-07-006). RESULTS: Based on the EMR data of 916 patients in end-of-life care, 78.4% signed do-not-attempt-resuscitation consents, 5.6% completed the documents for LSTs, and 10.2% completed both forms. LST decisions were mostly made by family members (81.5%). Most survey participants agreed that meaningless LSTs should be suspended, and the decision should be made by patients. Patients and family members (42-56%) and health professionals (56-58%) recommended discussing LST suspension when the patient is still conscious but with predicted deterioration of their condition. The suffering experienced by the patient was considered to be a priority by most patients (58%) and families (54%) during the decision-making process, while health professionals considered "the possibility of the patient's recovery" to be the highest priority (43-55%). CONCLUSIONS: There is still a significant discrepancy in the perceptions of LST decisions among health professionals, patients, and their families despite high awareness of the Act. This situation makes it challenging to implement the Act to ensure respect for the rights of patients to self-determination and dignified end-of-life. Further effort is needed to improve the awareness of LSTs and to clarify the ambiguity of document preparation timing.

End-of-Life Healthcare Utilization in Lewy Body Dementia.

Background: Lewy body dementia (LBD) is the second most common neurodegenerative dementia in the US, presenting unique end-of-life challenges. Objective: This study examined healthcare utilization and care continuity in the last year of life in LBD. Methods: Medicare claims for enrollees with LBD, continuously enrolled in the year preceding death, were examined from 2011-2018. We assessed hospital stays, emergency department (ED) visits, intensive care unit (ICU) admissions, life-extending procedures, medications, and care continuity. Results: We identified 45,762 LBD decedents, predominantly female (51.8%), White (85.9%), with average age of 84.1 years (SD 7.5). There was a median of 2 ED visits (IQR 1-5) and 1 inpatient stay (IQR 0-2). Higher age was inversely associated with ICU stays (Odds Ratio [OR] 0.96; 95% Confidence Interval [CI] 0.96-0.97) and life-extending procedures (OR 0.96; 95% CI 0.95-0.96). Black and Hispanic patients experienced higher rates of ED visits, inpatient hospitalizations, ICU admissions, life-extending procedures, and in-hospital deaths relative to White patients. On average, 15 (7.5) medications were prescribed in the last year. Enhanced care continuity correlated with reduced hospital (OR 0.72; 95% CI 0.70-0.74) and ED visits (OR 0.71; 95% CI 0.69-0.87) and fewer life-extending procedures (OR 0.71; 95% CI 0.64-0.79). Conclusions: This study underscored the complex healthcare needs of people with LBD during their final year, which was influenced by age and race. Care continuity may reduce hospital and ED visits and life-extending procedures.