How do we get from hyperexcitability to excitotoxicity in amyotrophic lateral sclerosis?

Amyotrophic lateral sclerosis is a devastating neurodegenerative disease that, at present, has no effective cure. Evidence of increased circulating glutamate and hyperexcitability of the motor cortex in patients with amyotrophic lateral sclerosis have provided an empirical support base for the 'dying forward' excitotoxicity hypothesis. The hypothesis postulates that increased activation of upper motor neurons spreads pathology to lower motor neurons in the spinal cord in the form of excessive glutamate release, which triggers excitotoxic processes. Many clinical trials have focused on therapies that target excitotoxicity via dampening neuronal activation, but not all are effective. As such, there is a growing tension between the rising tide of evidence for the 'dying forward' excitotoxicity hypothesis and the failure of therapies that target neuronal activation. One possible solution to these contradictory outcomes is that our interpretation of the current evidence requires revision in the context of appreciating the complexity of the nervous system and the limitations of the neurobiological assays we use to study it. In this review we provide an evaluation of evidence relevant to the 'dying forward' excitotoxicity hypothesis and by doing so, identify key gaps in our knowledge that need to be addressed. We hope to provide a road map from hyperexcitability to excitotoxicity so that we can better develop therapies for patients suffering from amyotrophic lateral sclerosis. We conclude that studies of upper motor neuron activity and their synaptic output will play a decisive role in the future of amyotrophic lateral sclerosis therapy.

Improved Symptom Change Enhances Quality of Dying in Patients With Advanced Cancer: An East Asian Cross-Cultural Study.

BACKGROUND: Symptom burdens tend to increase for patients with cancer and their families over the disease trajectory. There is still a lack of evidence on the associations between symptom changes and the quality of dying and death. In this context, this research investigated how symptom changes influence the quality of dying and death. METHODS: This international prospective cohort study (the East Asian Collaborative Cross-Cultural Study to Elucidate the Dying Process (EASED), 2017-2019) included 22, 11, and 4 palliative care units across Japan, South Korea, and Taiwan. Eligible participants were adults (Japan and Korea, ≥18 years; Taiwan, ≥20 years) with locally advanced or metastatic cancer. Physical and psychological symptoms were assessed by physicians upon admission and within 3 days before death. Death quality was assessed using the Good Death Scale (GDS), developed in Taiwan. Univariate and multivariate regression analyses were used to identify correlations between symptom severity changes and GDS scores. RESULTS: Among 998 patients (542 [54.3%] men and 456 [45.7%] women; mean [SD] age = 70.1 [± 12.5] years), persistent dyspnea was associated with lower GDS scores when compared to stable dyspnea (ß = -0.427, 95% CI = -0.783 to -0.071). Worsened (-1.381, -1.932 to -0.831) and persistent (-1.680, -2.701 to -0.659) delirium were also significantly associated with lower GDS scores. CONCLUSIONS: Better quality of dying and death was associated with improved symptom control, especially for dyspnea and delirium. Integrating an outcome measurement for the quality of dying and death is important in the management of symptoms across the disease trajectory in a goal-concordant manner.

Conscience-Based Barriers to Medical Aid in Dying: A Survey of Colorado Physicians.

BACKGROUND: Approximately 20% of the United States' population lives in a state or jurisdiction where medical aid in dying (MAiD) is legal. It is unknown how physicians' own barriers are associated with their provision of the spectrum of MAiD services. OBJECTIVE: To measure physicians' religious and/or ethical barriers to providing MAiD services and how such barriers relate to physicians' intentions and behaviors. DESIGN: Three-wave cross-sectional survey fielded in Colorado in 2020-2021. PARTICIPANTS: Physicians providing care to patients likely clinically eligible for MAiD according to probabilistic sampling. MAIN MEASURES: Physicians self-reported barriers to their own participation in MAiD. We considered large ethical and/or religious barriers to be conscience-based barriers. We measured physicians' self-reported intention to participate and self-reported prior participation in MAiD since it was legalized in Colorado in 2017. We estimated differences in intention and behavior outcomes according to presence of conscience-based barriers, adjusting for physician gender, race/ethnicity, time in practice, and specialty. KEY RESULTS: Among 300 respondents, 26% reported "large" ethical and/or religious barriers to their involvement in MAiD. Physicians with longer time in practice and those identifying as non-White were more likely to report conscience-based barriers to MAiD. Comparing physicians with and without conscience-based barriers to MAiD, we found no difference in ancillary participation (discussing, referring) but significant differences in direct participation (serving as consultant [5% vs. 31%] or attending [0% vs. 22%]). CONCLUSIONS: Approximately one-quarter of physicians likely to care for MAiD-eligible patients in Colorado reported religious and/or ethical barriers to MAiD. Despite religious and/or ethical barriers, the vast majority of physicians were willing to discuss MAiD and/or refer patients seeking MAiD services. These data provide important empirical foundation for policy from hospitals and health systems as well as medical specialty groups with official positions on MAiD.

Assisted dying for mental illness: a contemporary concern that requires careful and compassionate consideration.

With assisted dying becoming increasingly available to people suffering from somatic diseases, the question arises whether those suffering from mental illnesses should also have access. At the heart of this difficult and complex matter are values such as equality and parity of esteem. These issues require humane deliberation.

Medical assistance in dying for mental illness: a complex intervention requiring a correspondingly complex evaluation approach.

Medical assistance in dying for mental illness as a sole underlying medical condition (MAiD MI-SUMC) is a controversial and complex policy in terms of psychosocial and ethical medical practice implications. We discuss the status of MAiD MI-SUMC in Canada and argue for the use of the UK Medical Research Council's framework on complex interventions in programme evaluations of MAiD MI-SUMC. It is imperative to carefully and rigorously evaluate the implementation of MAiD MI-SUMC to ensure an understanding of the multiple facets of implementation in contexts permeated by unique social, economic, cultural and historical influences, with a correspondingly diverse array of outcomes. This requires a complexity-informed programme evaluation focused on context-dependent mechanisms and stakeholder experiences, including patients, service providers and other people affected by the policy. It is also important to consider the economic impact on health and social welfare systems. Such evaluations can provide the data needed to guide evidence-informed decision-making that can contribute to safer implementation and refinement of MAiD MI-SUMC.

Promising Results of Kidney Transplantation From Donors Following Euthanasia During 10-Year Follow-Up: A Nationwide Cohort Study.

The outcome of kidneys transplanted following organ donation after euthanasia (ODE) remains unclear. This study analyzed all kidney transplantations in the Netherlands from January 2012 to December 2021, comparing the outcomes following ODE, donation after circulatory death (DCD-III), and donation after brain death (DBD). 9,208 kidney transplantations were performed: 148 ODE, 2118 DCD-III, and 1845 DBD. Initial graft function was compared between these categories. Immediate graft function, delayed graft function and primary non-function in ODE kidney recipients were 76%, 22%, and 2%, respectively, 47%, 50% and 3% in DCD-III kidney recipients and 73%, 25%, and 2% in DBD kidney recipients (overall p-value: p < 0.001). The number of kidneys transplanted over a median follow-up period of 4.0 years (IQR 2.0-6.6), was 1810, including 72 ODE, 958 DCD-III and 780 DBD kidneys. In this period, 213 grafts (11.8%) failed [7 grafts (9.7%) from ODE donors, 93 grafts (9.7%) from DCD-III donors, and 113 grafts (14.5%) from DBD donors]. Kidneys transplanted after euthanasia have a good immediate graft function, a comparable longitudinal 10 years eGFR, and similar graft failure hazard to kidneys from DCD-III and DBD. Kidney transplantation following ODE is a valuable and safe contribution to the donor pool.

The debate rages on: physician-assisted suicide in an ethical light.

The British Medical Association and some Royal Colleges have recently changed their stance on physician-assisted suicide from 'opposed' to forms of 'neutral'. The Royal College of Anaesthetists will poll members soon on whether to follow suit. Elsewhere neutrality amongst professional bodies has preceded legalisation of physician-assisted suicide. We examine the arguments relevant to the anaesthesia community and its potential impact in the UK.

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.

The study of psychosocial outcomes of parents bereaved by pediatric illness: a scoping review of methodology and sample composition.

OBJECTIVE: Parents of children who died of a medical condition experience a range of psychosocial outcomes. The current scoping review aims to summarize the outcomes assessed, methodology, and sample characteristics of recent psychosocial research conducted with this population. METHODS: Included studies were limited to peer-reviewed, psychosocial outcomes research published between August 2011 and August 2022, written in English, and including caregiver study participants of children who died of a medical condition. Data sources were scholarly journal articles from 9 electronic databases, including Scopus, Web of Science, Academic Search Primer, ProQuest Research Library, PubMed, Embase, PsycINFO, Psychology & Behavioral Sciences Collection, and Health Source: Nursing/Academic Edition. The Mixed Methods Appraisal Tool-2018 evaluated methodological quality. RESULTS: The study sample included 106 studies, most of which were either qualitative (60%) or quantitative (29%). Mixed-methods studies (8%) and randomized clinical trials (2%) were also identified. Study quality was variable, but most studies met all quality criteria (73%). Studies primarily represented cancer populations (58%), White participants (71%), and mothers (66%). Risk-based psychosocial outcomes (e.g., grief) were more commonly assessed than resilience-based outcomes. CONCLUSIONS: The current scoping review revealed that recent research assessing the psychosocial outcomes of bereaved parents is limited in the representation of diverse populations, primarily qualitative, of broadly strong methodological quality, and oriented to psychosocial risk. To enhance the state of the science and inform evidence-based psychosocial services, future research should consider varied methodologies to comprehensively assess processes of risk and resilience with demographically and medically diverse populations.

Euthanasia of animals - association with veterinarians' suicidal thoughts and attitudes towards assisted dying in humans: a nationwide cross-sectional survey (the NORVET study).

BACKGROUND: Veterinarians are an occupational group with an increased suicide risk. Euthanasing animals may influence both veterinarians' views on assisted dying in humans and their suicide risk. We investigated (I) attitudes towards assisted dying, (II) whether the field of work and the frequency of euthanasing animals were associated with positive attitudes towards human euthanasia, and (III) whether frequently euthanasing animals was associated with serious suicidal thoughts. METHODS: We conducted a nationwide cross-sectional study among veterinarians in Norway (response rate: 75%). Logistic regression models were used to calculate the odds ratios for both positive attitudes towards human euthanasia and serious suicidal thoughts. The analyses were adjusted for socio-demographic and work-related factors. RESULTS: Fifty-five percent of the veterinarians agreed that euthanasia should be permitted for humans with a fatal disease and short life expectancy. Working with companion animals was independently associated with positive attitudes towards human euthanasia (OR = 1.66 (95% CI: 1.23-2.23)), while veterinarians' frequency of euthanasing animals was not. Frequency of euthanasing animals was independently associated with serious suicidal thoughts, OR = 2.56 (95% CI: 1.35-4.87). CONCLUSIONS: Veterinarians' attitudes towards assisted dying in humans did not differ from those of the general population. Veterinarians' frequency of euthanasing animals was not associated with positive attitudes towards euthanasia in humans. However, veterinarians working in companion animal practices were more likely to have positive attitudes towards euthanasia in humans. Moreover, euthanising animals five times or more a week was associated with serious suicidal thoughts. We need more research to infer about causality in these findings.

Care considerations in medical assistance in dying for persons with mental illness as the sole underlying medical condition: a qualitative study of patient and family perspectives.

BACKGROUND: Persons with mental illness as their sole underlying medical condition are eligible to access medical assistance in dying (MAiD) in a small number of countries, including Belgium, the Netherlands, Luxemburg and Switzerland. In Canada, it is anticipated that people experiencing mental illness as their sole underlying medical condition (MI-SUMC) will be eligible to request MAiD as of March 17th 2024. To date, few studies have addressed patient and family perspectives on MAiD MI-SUMC care processes. This study aimed to address this gap and qualitatively explore the perspectives of persons with lived experience of mental illness and family members on care considerations during MI-SUMC implementation. METHODS: Thirty adults with lived experience of mental illness and 25 adult family members residing in Ontario participated in this study. To facilitate participant engagement, the semi-structured interview used a persona-scenario exercise to discuss perspectives on MAiD MI-SUMC acceptability and care considerations. Framework analysis was used to inductively analyze data using NVivo 12 Pro. Steps, processes, or other care considerations suggested by the participants were charted in a framework matrix after familiarization with the narratives. Key themes were further identified. A lived-experience advisory group participated in every aspect of this study. RESULTS: Six themes were developed from the patient and family narratives: (1) Raising MAiD MI-SUMC awareness; (2) Sensitive Introduction of MAiD MI-SUMC in goals of care discussions; (3) Asking for MAiD MI-SUMC: a person-focused response; (4) A comprehensive circle of MAiD MI-SUMC care; (5) A holistic, person-centered assessment process; and (6) Need for support in the aftermath of the decision. These themes highlighted a congruence of views between patient and family members and described key desired process ingredients, including a person-centred non-judgmental stance by care providers, inter-professional holistic care, shared decision making, and the primacy of patient autonomy in healthcare decision making. CONCLUSIONS: Family and patient perspectives on the implementation of MAiD MI-SUMC offer important considerations for service planning that could complement existing and emerging professional practice standards. These stakeholders' perspectives will continue to be essential in MAiD MI-SUMC implementation efforts, to better address the needs of diverse communities and inform improvement efforts.

Maybe for unbearable suffering: Diverse racial, ethnic and cultural perspectives of assisted dying. A scoping review.

BACKGROUND: Assisted dying, also commonly known as euthanasia and physician-assisted suicide, is legal in many countries. Interest in assisted dying is growing due to evolving societal understandings of a good death and a desire for choice. Ethico-legal perspectives are well-known, but as societies become more heterogenous, a greater understanding of the perspectives of people from diverse racial, ethnic, and cultural backgrounds is needed. AIM: To explore perspectives of people from diverse racial, ethnic and cultural backgrounds about assisted dying. DESIGN: Scoping review with narrative synthesis. The protocol was registered with Open Science Framework. DATA SOURCES: Medline, CINAHL Complete, PsycINFO and ProQuest Dissertations & Theses Global were searched from inception to May 2023. Citations were independently assessed against inclusion and exclusion criteria. RESULTS: Of the 17 included studies, perspectives of assisted dying were presented according to religion, religiosity, spirituality, race, ethnicity and ancestry. Perspectives were diverse, presenting more as a spectrum, with multiple intersections and interconnections. Support and/or opposition for assisted dying differed according to cultural attributes, but even amongst those with similar cultural attributes, perspectives differed according to life experiences and notions of suffering. CONCLUSION: Perspectives on assisted dying are dynamic and evolving. Even where assisted dying is legalised, individual's cultural attributes contribute to unique perspectives of assisted dying as an end-of-life option. Thus, understanding a person's culture, beliefs, expectations and choices in illness, treatment goals and care is fundamental, extending beyond what may be already considered as part of clinician-patient care relationships and routine advance care planning.

"Walk me through the final day": A thematic analysis study on the family caregiver experience of the Medical Assistance in Dying procedure day.

BACKGROUND: Legalization of assisted dying is progressively expanding worldwide. In Canada, the Medical Assistance in Dying Act became law in 2016. As assisted dying regulations evolve worldwide, comprehending its subjective impact and broader consequences, especially on family members, becomes pivotal for shaping practice, policy, and training. AIM: The goal of this study is to understand the experience of family caregivers on the assisted dying procedure day. DESIGN: Qualitative, thematic analysis, research using semi-structured interviews. SETTING/PARTICIPANTS: Family caregivers of patients who received assisted dying in two hospitals in Canada were recruited. Interviews were conducted at least 6 months after patient death. Conceptual saturation was achieved after analyzing 18 interviews. RESULTS: While caregivers expressed gratitude for the availability of Medical Assistance in Dying, they also described the procedure day as potentially jarring and unsettling. We identified five aspects that shaped their experience: attuned support from the clinical team; preparation for clinical details; congruence between the setting and the importance of the event; active participation and ceremony; and pacing and timing of the procedure. Together, these aspects impacted the level of uneasiness felt by caregivers on the procedure day. CONCLUSIONS: This study emphasized the importance of a family-centered approach to delivering Medical Assistance in Dying. It underscored recognizing the needs of family caregivers during the procedure day and offering strategies to ease their experience. Healthcare providers in jurisdictions where assisted dying is legal or deliberated should consider the applicability of these findings to their unique context.

'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.

The role of fat-soluble vitamins in efferocytosis.

Cell death and the efficient removal of dead cells are two basic mechanisms that maintain homeostasis in multicellular organisms. efferocytosis, which includes four steps recruitment, recognition, binding and signaling, and engulfment. Effectively and quickly removes apoptotic cells from the body. Any alteration in efferocytosis can lead to several diseases, including autoimmune and inflammatory conditions, atherosclerosis, and cancer. A wide range of dietary components affects apoptosis and, subsequently, efferocytosis. Some vitamins, including fat-soluble vitamins, affect different stages of efferocytosis. Among other things, by affecting macrophages, they are effective in the apoptotic cleansing of cells. Also, polyphenols indirectly intervene in efferocytosis through their effect on apoptosis. Considering that there are limited articles on the effect of nutrition on efferocytosis, in this article we will examine the effect of some dietary components on efferocytosis.

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.

Medical Assistance in Dying for Mental Illness as a Sole Underlying Medical Condition and Its Relationship to Suicide: A Qualitative Lived Experience-Engaged Study: Aide Médicale à Mourir Pour Maladie Mentale Comme Seule Condition Médicale Sous-Jacente et Son Lien Avec le Suicide: Une Etude Qualitative Engagée Dans l'Expérience Vécue.

OBJECTIVE: This lived experience-engaged study aims to understand patient and family perspectives on the relationship between suicidality and medical assistance in dying when the sole underlying medical condition is mental illness (MAiD MI-SUMC). METHOD: Thirty individuals with mental illness (age M = 41.8 years, SD = 14.2) and 25 family members (age M = 47.5 years, SD = 16.0) participated in qualitative interviews examining perspectives on MAiD MI-SUMC and its relationship with suicide. Audio recordings were transcribed and analysed using reflexive thematic analysis. People with lived experience were engaged in the research process as team members. RESULTS: Four main themes were developed, which were consistent across individuals with mental illness and family members: (a) deciding to die is an individual choice to end the ongoing intolerable suffering of people with mental illness; (b) MAiD MI-SUMC is the same as suicide because the end result is death, although suicide can be more impulsive; (c) MAiD MI-SUMC is a humane, dignified, safe, nonstigmatized alternative to suicide; and (4) suicidality should be considered when MAiD MI-SUMC is requested, but suicidality's role is multifaceted given its diverse manifestations. CONCLUSION: For patient-oriented mental health policy and treatment, it is critical that the voices of people with lived experience be heard on the issue of MAiD MI-SUMC. Given the important intersections between MAiD MI-SUMC and suicidality and the context of suicide prevention, the role that suicidality should play in MAiD MI-SUMC is multifaceted. Future research and policy development are required to ensure that patient and family perspectives guide the development and implementation of MAiD MI-SUMC policy and practice.

Medical oncologist perceptions and willingness to participate in voluntary assisted dying in South Australia.

This study surveyed South Australian medical oncologists to capture their perceptions, willingness to participate and perceived barriers and motivations to participation in voluntary assisted dying (VAD) activities. Approximately 70% of surveyed medical oncologists reported familiarity with VAD legislation. Less than half of physicians (39.1%) reported willingness to participate in any VAD activities, and the rate of conscientious objection was 22%. The top barriers to participation were lack of time and uncertainty given no prior experience. These results demonstrate both a low rate of conscientious objection and a low rate of willingness to participate at the point of VAD implementation in South Australia, and identify barriers to participation that are largely logistical.

The conveyor belt for older people nearing the end of life.

The current fallback position for the elderly frail nearing the end of life (less than 12 months to live) is hospitalisation. There is a reluctance to use the term 'terminally ill' for this population, resulting in overtreatment, overdiagnosis and management that is not consistent with the wishes of people. This is the major contributor to the so-called hospital crisis, including decreased capacity of hospitals, reduced ability to conduct elective surgery, increased attendances at emergency departments and ambulance ramping. The authors recently conducted the largest randomised study, to their knowledge, attempting to inform specialist hospital medical teams about the terminally ill status of their admitted patients. This information did not influence their clinical decisions in any way. The authors discuss the reasons why this may have occurred, such as the current avoidance of discussing death and dying by society and the concentration of healthcare workers on actively managing the acute presenting problem and ignoring the underlying prognosis in the elderly frail. The authors discuss ways of improving the management of the elderly nearing the end of life, such as more detailed goals of care discussions using the concept of shared decision-making rather than simply completing Advanced Care Decision documents. Empowering people in this way could become the most important driver of people's health care.

Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada.

INTRODUCTION: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues. METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis. RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences. CONCLUSION: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.