Transition to end-of-life care in patients with neurological diseases in an acute hospital ward.

BACKGROUND: Transitioning to end-of-life care and thereby changing the focus of treatment directives from life-sustaining treatment to comfort care is important for neurological patients in advanced stages. Late transition to end-of-life care for neurological patients has been described previously. OBJECTIVE: To investigate whether previous treatment directives, primary medical diagnoses, and demographic factors predict the transition to end-of-life care and time to eventual death in patients with neurological diseases in an acute hospital setting. METHOD: All consecutive health records of patients diagnosed with stroke, amyotrophic lateral sclerosis (ALS), and Parkinson's disease or other extrapyramidal diseases (PDoed), who died in an acute neurological ward between January 2011 and August 2020 were retrieved retrospectively. Descriptive statistics and multivariate Cox regression were used to examine the timing of treatment directives and death in relation to medical diagnosis, age, gender, and marital status. RESULTS: A total of 271 records were involved in the analysis. Patients in all diagnostic categories had a treatment directive for end-of-life care, with patients with haemorrhagic stroke having the highest (92%) and patients with PDoed the lowest (73%) proportion. Cox regression identified that the likelihood of end-of-life care decision-making was related to advancing age (HR = 1.02, 95% CI: 1.007-1.039, P = 0.005), ischaemic stroke (HR = 1.64, 95% CI: 1.034-2.618, P = 0.036) and haemorrhagic stroke (HR = 2.04, 95% CI: 1.219-3.423, P = 0.007) diagnoses. End-of-life care decision occurred from four to twenty-two days after hospital admission. The time from end-of-life care decision to death was a median of two days. Treatment directives, demographic factors, and diagnostic categories did not increase the likelihood of death following an end-of-life care decision. CONCLUSIONS: Results show not only that neurological patients transit late to end-of-life care but that the timeframe of the decision differs between patients with acute neurological diseases and those with progressive neurological diseases, highlighting the particular significance of the short timeframe of patients with the progressive neurological diseases ALS and PDoed. Different trajectories of patients with neurological diseases at end-of-life should be further explored and clinical guidelines expanded to embrace the high diversity in neurological patients.

Clinical features of audible upper airway secretions ("death rattle") in patients with cancer in the last days of life.

PURPOSE: Audible upper airway secretions ("death rattle") is a common problem in cancer patients at the end-of-life. However, there is little information about its clinical features. METHODS: This is a secondary analysis of a cluster randomised trial of clinically-assisted hydration in cancer patients in the last days of life. Patients were assessed 4 hourly for end-of-life problems (including audible secretions), which were recorded as present or absent, excepting restlessness/agitation, which was scored using the modified Richmond Agitation and Sedation Scale. Patients were followed up until death. RESULTS: 200 patients were recruited, and 186 patients died during the study period. Overall, 54.5% patients developed audible secretions at some point during the study, but only 34.5% patients had audible secretions at the time of death. The prevalence of audible secretions increased the closer to death, with a marked increase in the last 12-16 h of life (i.e. the prevalence of audible secretions was highest at the time of death). Of those with audible secretions at the time of death, 24 had had a previous episode that had resolved. Development of audible secretions was not associated with use of clinically-assisted hydration, but there was an association between audible secretions and restlessness/agitation, and audible secretions and pain. However, most patients with audible secretions were not restless/agitated, or in pain, when assessed. CONCLUSION: Audible secretions ("death rattle") are common in cancer patients at the end-of-life, but their natural history is extremely variable, with some patients experiencing multiple episodes during the terminal phase (although not necessarily experiencing an episode at the time of death).

Prevalence of oral diseases in patients under palliative care: a systematic review and meta-analysis.

PURPOSE: Oral alterations are frequently observed in patients undergoing palliative care and are linked to the direct or indirect effects of the primary medical condition, comorbidities and medical management, leading to oral pain, impacting oral intake, and affecting quality of life. This systematic review aims to assess the prevalence of oral disease in palliative care patients. METHODS: The protocol was registered at the PROSPERO database, and a systematic review of the literature was performed based on the PRISMA statement. A thorough evaluation of studies from five databases and gray literature was conducted. The risk of bias in each study was assessed using the Joanna Briggs Institute checklist for cross-sectional and case-control studies. A quantitative analysis was conducted on five studies using meta-analysis, and the degree of certainty in the evidence was determined using the GRADE tool. RESULTS: The sample consisted of 2,502 patients, with a slight male predominance (50.43%). The average age was 66.92 years. The prevalence of oral diseases among palliative care patients was as follows: caries 32% (95% CI, 0.11-0.56; I2 = 93%), and oral candidiasis 17% (95% CI,0.11-0.25; I2 = 74%). Gingivitis and stomatitis were also reported, but with less frequency. CONCLUSION: Dental intervention should take place as early as possible, ideally from the time of the patient's initial admission to palliative care, with regular monitoring of oral health. This approach can enhance the patient's comfort and quality of life and help prevent more severe complications in the future.

Timely integration of palliative care. the reality check. a retrospective analysis.

PURPOSE: A large volume of literature suggests that timely integration of palliative care (PC) enhances the well-being, quality of life and satisfaction of patients and their families. It may also positively impact clinical outcomes and healthcare costs throughout the disease trajectory. Therefore, reviewing clinical practice to reflect real-life situations regarding timely PC integration is essential. METHODS: This study, conducted at the Vienna General Hospital between March 2016 and August 2022, retrospectively examined PC consultation (PCC) requests. It aimed to assess the timeliness of PC integration by analysing the duration between diagnosis and the first PCC request, as well as the interval between the first PCC request and death. RESULTS: This study included 895 PCCs. The median time from diagnosis to the first PCC was 16.6 (interquartile range (IQR): 3.9-48.4) months, while the median time from the first PCC to death was 17.2 (IQR: 6.1-50.7) days. The median time from diagnosis to first PCC was 10.4 months in females (confidence interval (CI): 6.0-14.8) compared to 10.6 months in males (CI: 8.1-13.1; p = 0.675). There were no gender disparities in the time from first PCC to death, with a median of 23.3 days (CI: 15.6-31.0) for females and 22.3 days (CI: 16.2-28.4) for males (p = 0.93). Fifty percent of patients died between 5 and 47 days after the first PCC. CONCLUSION: These findings highlight the discrepancy between the clinical perception of PC as end-of-life care and the existing literature, thereby emphasising the importance of timely PC integration.

Reduction in potentially inappropriate end-of-life hospital care for cancer patients during the COVID-19 pandemic: A retrospective population-based study.

BACKGROUND: The COVID-19 pandemic impacted cancer diagnosis and treatment. However, little is known about end-of-life cancer care during the pandemic. AIM: To investigate potentially inappropriate end-of-life hospital care for cancer patients before and during the COVID-19 pandemic. DESIGN: Retrospective population-based cohort study using data from the Netherlands Cancer Registry and the Dutch National Hospital Care Registration. Potentially inappropriate care in the last month of life (chemotherapy administration, >1 emergency room contact, >1 hospitalization, hospitalization >14 days, intensive care unit admission or hospital death) was compared between four COVID-19 periods and corresponding periods in 2018/2019. PARTICIPANTS: A total of 112,919 cancer patients (⩾18 years) who died between January 2018 and May 2021 were included. RESULTS: Fewer patients received potentially inappropriate end-of-life care during the COVID-19 pandemic compared to previous years, especially during the first COVID-19 peak (22.4% vs 26.0%). Regression analysis showed lower odds of potentially inappropriate end-of-life care during all COVID-19 periods (between OR 0.81; 95% CI 0.74-0.88 and OR 0.92; 95% CI 0.87-0.97) after adjustment for age, sex and cancer type. For the individual indicators, fewer patients experienced multiple or long hospitalizations, intensive care unit admission or hospital death during the pandemic. CONCLUSIONS: Cancer patients received less potentially inappropriate end-of-life care during the COVID-19 pandemic. Because several factors may have contributed, it is unclear whether this reflects better quality care. However, these findings raise important questions about what pandemic-induced changes in care practices can help provide appropriate end-of-life care for future patients in the context of increasing patient numbers and limited resources.

How do primary care clinicians approach hospital admission decisions for people in the final year of life? A systematic review and narrative synthesis.

BACKGROUND: The final year of life is often associated with increasing health complexities and use of health services. This frequently includes admission to an acute hospital which may or may not convey overall benefit. This uncertainty makes decisions regarding admission complex for clinicians. There is evidence of much variation in approaches to admission. AIMS: To explore how Primary Care clinicians approach hospitalisation decisions for people in the final year of life. DESIGN: Systematic literature review and narrative synthesis. DATA SOURCES: We searched the following databases from inception to April 2023: CINAHL, Cochrane Library, Embase, MedLine, PsychInfo and Web of Science followed by reference and forward citation reviews of included records. RESULTS: A total of 18 studies were included: 14 qualitative, 3 quantitative and 1 mixed methods study. As most of the results were qualitative, we performed a thematic analysis with narrative synthesis. Six key themes were identified: navigating the views of other stakeholders; clinician attributes; clinician interpretation of events; the perceived adequacy of the current setting and the alternatives; system factors and continuity of care. CONCLUSION: This review shows that a breadth of factors influence hospitalisation decisions. The views of other stakeholders take great importance but it is not clear how these views are, or should be, should be balanced. Clinician factors, such as experience with palliative care and clinical judgement, are also important. Future research should focus on how different aspects of the decision are balanced and to consider if, and how, this could be improved to optimise patient-centred outcomes and use of health resources.

Posttraumatic growth in palliative care settings: A scoping review of prevalence, characteristics and interventions.

BACKGROUND: Posttraumatic growth refers to positive psychological change following trauma. However, there is a need to better understand the experience of posttraumatic growth in the palliative care setting as well as the availability and efficacy of interventions that target this phenomenon. AIMS: To provide a review of the prevalence, characteristics and interventions involving posttraumatic growth in adults receiving palliative care and to collate recommendations for future development and utilisation of interventions promoting posttraumatic growth. DESIGN: We performed a systematic scoping review of studies investigating posttraumatic growth in palliative care settings using the Arksey and O'Malley six-step scoping review criteria. We used the PRISMA guidelines for scoping reviews. DATA SOURCES: Articles in all languages available on Ovid Medline [1946-2022], Embase [1947-2022], APA PsycINFO [1947-2022] and CINAHL [1981-2022] in November 2022. RESULTS: Of 2167 articles located, 17 were included for review. These reported that most people report low to moderate levels of posttraumatic growth with a decline towards end-of-life as distress and symptom burden increase. Associations include a relationship between posttraumatic growth, acceptance and greater quality-of-life. A limited number of interventions have been evaluated and found to foster posttraumatic growth and promote significant psychological growth. CONCLUSION: Posttraumatic growth is an emerging concept in palliative care where although the number of studies is small, early indications suggest that interventions fostering posttraumatic growth may contribute to improvements in psychological wellbeing in people receiving palliative care.

Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence.

BACKGROUND: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit. AIM: Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals. DESIGN: Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework. DATA SOURCES: CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included. RESULTS: One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (n = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated. CONCLUSION: Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access.

Development of a palliative paramedicine framework to standardise best practice: A Delphi study.

BACKGROUND: Growing global demand for palliative care services has prompted generalist clinicians to provide adjunct support to specialist teams. Paramedics are uniquely placed to respond to these patients in the community. However, embedding palliative care principles into their core business will require multifactorial interventions at structural, healthcare service and individual clinician and consumer levels. AIM: To develop a palliative paramedicine framework suitable for national implementation, to standardise best practice in Australia. DESIGN: Delphi study utilising questionnaire completion; each round informed the need for, and content of, the next round. Free text comments were also sought in Round 1. Two rounds of Delphi were undertaken. SETTING/PARTICIPANTS: Sixty-eight participants took part in Round 1, representing six countries, and 66 in Round 2. Participants included paramedics, palliative care doctors and nurses, general practitioners, researchers and carers with lived experience and expertise in palliative paramedicine. RESULTS: Seventeen of the original 24 components gained consensus; 6 components were modified; and 9 new components arose from Round 1. All modified and new components gained consensus in Round 2. Only one original component did not gain consensus across both rounds and was excluded from the final 32-component framework. CONCLUSION: This study has developed a comprehensive national framework addressing the macro-, meso- and micro-level interventions required to standardise palliative paramedicine across Australia. Future research ought to engage a multidisciplinary team to create an implementation strategy, addressing any perceived barriers, facilitators and challenges for applying the framework into policy and practice.

What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.

BACKGROUND: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. AIM: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. DESIGN: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. SETTING/PARTICIPANTS: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. RESULTS: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. CONCLUSIONS: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.

Pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life in older people: A systematic review.

BACKGROUND: Evidence based guidelines for treatment of physical symptoms during the last days of life in older people are not available. AIM: We wanted to synthesize the existing evidence on the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting during the last days of life in older people to develop recommendations that can help guide clinical practice. DESIGN: A systematic review was conducted (PROSPERO #CRD42023406100) and reported in accordance with PRISMA guidelines. DATA SOURCES: MEDLINE and EMBASE were searched from inception till March 2023, together with national and international guideline databases. RESULTS: Four predominantly descriptive studies on opioid use were included for the treatment of pain and four for dyspnea, without clear evidence for the choice of one specific opioid, nor a specific opioid dose. For death rattle, five randomized controlled trials and two retrospective studies were included. These provide evidence for the prophylactic treatment of death rattle with hyoscine butylbromide. For fever, nausea, and vomiting, no articles met the inclusion criteria. CONCLUSION: Limited evidence exists to guide the pharmacological treatment of pain, dyspnea, death rattle, fever, nausea, and vomiting in the last days of life of older people. Other than the use of opioids for treatment of pain and dyspnea and prophylactic administration of hyoscine butylbromide to decrease the likelihood of developing death rattle, no specific recommendations can be formulated for use in clinical practice. This demonstrates the challenging nature of research in the last days of life of older people, despite its pressing need.

Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

BACKGROUND: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. AIM: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' DESIGN: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). FINDINGS: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. CONCLUSIONS: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

'How long do you think?' Unresponsive dying patients in a specialist palliative care service: A consecutive cohort study.

BACKGROUND: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. AIM: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. DESIGN: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. SETTING/PARTICIPANTS: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. RESULTS: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. CONCLUSION: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory.

How palliative care professionals develop coping competence through their career: A grounded theory.

BACKGROUND: Palliative care professionals face emotional challenges when caring for patients with serious advanced diseases. Coping skills are essential for working in palliative care. Several types of coping strategies are mentioned in the literature as protective. However, little is known about how coping skills are developed throughout a professional career. AIM: To develop an explanatory model of coping for palliative care professionals throughout their professional career. DESIGN: A grounded theory study. Two researchers conducted constant comparative analysis of interviews. SETTING/PARTICIPANTS: Palliative care nurses and physicians across nine services from Spain and Portugal (n = 21). Theoretical sampling included professionals who had not continued working in palliative care. RESULTS: Professionals develop their coping mechanisms in an iterative five-stage process. Although these are successive stages, each one can be revisited later. First: commencing with a very positive outlook and emotion, characterized by contention. Second: recognizing one's own vulnerability and experiencing the need to disconnect. Third: proactively managing emotions with the support of workmates. Fourth: cultivating an integrative approach to care and understanding one's own limitations. Fifth: grounding care on inner balance and a transcendent perspective. This is a transformative process in which clinical cases, teamwork, and selfcare are key factors. Through this process, the sensations of feeling overwhelmed sometimes can be reversed because the professional has come to understand how to care for themselves. CONCLUSIONS: The explicative model presents a pathway for personal and professional growth, by accumulating strategies that modulate emotional responses and encourage an ongoing passion for work.

Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study.

BACKGROUND: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. AIM: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. DESIGN: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. SETTING: European. PARTICIPANTS: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. RESULTS: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. CONCLUSIONS: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.

A window of opportunity for ICU end-of-life care-A retrospective multicenter cohort study.

BACKGROUND: The "window of opportunity" for intensive care staff to deliver end-of-life (EOL) care lies in the timeframe from "documenting the diagnosis of dying" to death. Diagnosing the dying can be a challenging task in the ICU. We aimed to describe the trajectories for dying patients in Danish intensive care units (ICUs) and to examine whether physicians document that patients are dying in time to perform EOL care and, if so, when a window of opportunity for EOL care exists. METHODS: From the Danish Intensive Care Database, we identified patients ≥18 years old admitted to Danish ICUs between January and December 2020 with an ICU stay of >96 h (four days) and who died during the ICU stay or within 7 days after ICU discharge. A chart review was performed on 250 consecutive patients admitted from January 1, 2020, to ICUs in the Central Denmark Region. RESULTS: In most charts (223 [89%]), it was documented that the patient was dying. Of those patients who received mechanical ventilation, 171 (68%) died after abrupt discontinuation of mechanical ventilation, and 63 (25%) died after gradual withdrawal. Patients whose mechanical ventilation was discontinued abruptly died after a median of 1 h (interquartile range [IQR]: 0-15) and 5 h (IQR: 2-15) after a diagnosis of dying was recorded. In contrast, patients with a gradual withdrawal died after a median of 108 h (IQR: 71-189) and 22 h (IQR: 5-67) after a diagnosis of dying was recorded. CONCLUSIONS: EOL care hinges on the ability to diagnose the dying. This study shows that there is a window of opportunity for EOL care, particularly for patients who are weaned from mechanical ventilation. This highlights the importance of intensifying efforts to address EOL care requirements for ICU patients and those discharged from ICUs who are not eligible for readmission.

Discrimination against the dying.

The purpose of this paper is to identify a kind of discrimination that has hitherto gone unrecognised. 'Terminalism' is discrimination against the dying, or treating the terminally ill worse than they would expect to be treated if they were not dying. I provide four examples from healthcare settings of this kind of discrimination: hospice eligibility requirements, allocation protocols for scarce medical resources, right to try laws and right to die laws. I conclude by offering some reflections on why discrimination against the dying has been hard to identify, how it differs from ageism and ableism, and its significance for end-of-life care.

Fostering relational autonomy in end-of-life care: a procedural approach and three-dimensional decision-making model.

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients' true wishes, meaningfully engaging patients' significant others, balancing interests among patients and significant others, and determining clinicians' obligations to change patients' unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients' competence (apart from decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman's procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman's account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician-patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care.

Quality outcomes for end-of-life care among people with haematological malignancies at a New Zealand cancer centre.

BACKGROUND: Little is known about the end-of-life (EOL) experience and specialist palliative care use patterns of patients with haematological malignancies (HMs) in New Zealand. AIMS: This retrospective analysis sought to examine the quality of EOL care received by people with HMs under the care of Auckland District Health Board Cancer Centre's haematology service and compare it to international data where available. METHODS: One hundred consecutive adult patients with HMs who died on or before 31 December 2019 were identified. We collected information on EOL care quality indicators, including anticancer treatment use and acute healthcare utilisation in the last 30 days of life, place of death and rate and timing of specialist palliative care input. RESULTS: During the final 14 and 30 days of life, 15% and 27% of the patients received anticancer therapy respectively. Within 30 days of death, 22% had multiple hospitalisations and 25% had an intensive care unit admission. Death occurred in an acute setting for 42% of the patients. Prior contact with hospital and/or community (hospice) specialist palliative care service was noted in 80% of the patients, and 67% had a history of hospice enrolment. Among them, 15% and 28% started their enrolment in their last 3 and 7 days of life respectively. CONCLUSIONS: The findings highlight the intensity of acute healthcare utilisation at the EOL and high rates of death in the acute setting in this population. The rate of specialist palliative care access was relatively high when compared with international experiences, with relatively fewer late referrals.

Heart failure and the cost of dying: must the ferryman always be paid?

BACKGROUND: Provision of palliative care in chronic heart failure (CHF) can support complex decision-making, significantly improve quality of life and may lower healthcare costs. AIMS: To examine whether healthcare costs differed in terminal admissions according to the adoption of a palliative approach. DESIGN: Retrospective review of medical records and costing data for all admissions resulting in death from CHF (July 2011 to December 2019), analysed as two groups (2011-2016 and 2016-2019) because of background changes in costings. SETTING: Admissions with CHF resulting in death in an Australian tertiary referral centre. RESULTS: The cohort (n = 439) were elderly (median age 83.7 years, interquartile range (IQR) = 77.6-88.7 years) and mostly men (54.9%). Half (230, 52.4%) were referred to a specialist palliative care team, whereas over a third (172, 39.2%) received a palliative approach. Receiving a palliative approach was associated with a nonstatistically significant lower admission cost (AU$12 710 vs AU$15 978; P = 0.19) between 2011 and 2016 (n = 101, 38.8%) and a significantly lower cost (AU$11 319 vs AU$15 978; P < 0.01) between 2016 and 2019 (n = 71, 39.7%). Intensive care admission resulted in the single greatest additional cost at AU$14 624 (IQR = AU$4130-AU$44 197) (n = 48, 2011-2016). Median terminal admission cost was lower for patients with comfort goals of care (P < 0.01), without life-sustaining interventions (P < 0.01) or who received a palliative approach (P < 0.01). Referral to inpatient specialist palliative care or receiving a palliative approach resulted in comparable admission costings (AU$11 621 [IQR = AU$4705-AU$32 457] and AU$11 466 [IQR = AU$4973-AU$25 614]). CONCLUSION: A palliative approach in terminal CHF admission may improve quality at the end of life and decrease costs associated with care.