Operationalizing the Intolerable Suffering Criterion in Advance Requests for Medical Assistance in Dying for People Living with Dementia in Canada.

In Canada, there is interest in expanding medical assistance in dying (MAID) to include advance requests (AR) for people living with dementia (PLWD). However, operationalizing the intolerable suffering criterion for MAID in ARs for PLWD is complicated by the Canadian legal context-in which MAID is understood as a medical intervention and suffering is conceptualized as subjective-and the degenerative nature of dementia. ARs that express a wish to receive MAID when the PLWD develops pre-specified impairments are problematic because people are unlikely to accurately predict the conditions that will cause intolerable suffering. ARs that express a wish to receive MAID when the PLWD exhibits pre-specified behaviors that likely represent suffering are problematic because they are inconsistent with the subjective conceptualization of suffering. Further research is required to determine whether adopting an objective conceptualization of suffering is justified in these cases and, if so, how to reliably identify intolerable suffering in PLWD.

How do exhausted parents experience their interactions with their children? A qualitative and participative study.

Introduction: Parental burnout, known as a state of physical and psychological exhaustion, results in an imbalance between the parent's perceived stressors in relation to parenting, and the resources available to the parent to cope with such stressors. The causes and consequences of parental burnout for the parents themselves have been studied from the parents' point of view, but the perception of parents regarding the impact of parental burnout on the parent-child relationship has not yet been documented. Methods: We conducted a qualitative study through semi-structured interviews with exhausted parents (n=21). We aimed to better understand their general interactions with their children, as well as the way they communicate with them about their state of exhaustion, knowing that dealing with parental suffering can have a long-term impact on the child. Results: Our results reveal that exhausted parents experience a widespread loss of control in all areas of their lives, particularly in their interaction with their children, which generates feelings of guilt and shame. Communicating their experience to their children can create various difficulties for both parents and children. This may complicate the process of seeking help and reinforce the feeling of isolation. Discussion: An emerging result from our analysis leads us to identify a need for the parents to be heard and validated in their suffering who took part in this research.

Waiting for Care and Community Organizing for Serious Health-Related Suffering in Kerala, India.

We explore the temporalities that shape and alleviate serious health-related suffering among those with chronic and terminal conditions in Kerala, India. Drawing on ethnographic fieldwork between 2009 and 2019, we examine the entanglements between waiting for care within dominant institutions and the community organizing that palliates this waiting. Specifically, people navigate multiple medical institutions, experience loneliness and abandonment, loss of autonomy, and delays and denials of recognition as they wait for care. Community palliative care organizations offering free, routine, home-based care provide samadhanam (peace of mind) and swatantrayam (self-determination) in lifeworlds mired with chronic waiting. We document how community care sustains an alternative politics of shared time, untethered from marketized notions of efficiency and productivity toward profits. In so doing, we cast in high relief community healthcare imaginaries that alleviate serious health-related suffering and reconfigure Global North-centric perspectives.

Creating a safer and better functioning system: Lessons to be learned from the Netherlands for an ethical defence of an autonomy-only approach to assisted dying.

The proposal to allow assisted dying for people who are not severely ill reignited the Dutch end-of-life debate when it was submitted in 2016. A key criticism of this proposal is that it is too radical a departure from the safe and well-functioning system the Netherlands already has. The goal of this article is to respond to this criticism and question whether the Dutch system really can be described as safe and well functioning. I will reconsider the usefulness of the suffering criterion, and I will ultimately argue this criterion should be rejected altogether. Instead, we should consider moving towards an autonomy-only approach to assisted dying. This would resolve some significant issues occurring under the current system of assisted dying in the Netherlands and ultimately make the process safer and better functioning. I will then consider some possible objections to adopting an autonomy-only approach and provide some preliminary responses to these also. I will finally highlight some potential areas where further research may be necessary, namely, how to mitigate the effect of external factors such as poverty or other life aspects that may have the potential to distort the individual's ability to make autonomous decisions. I will also consider some possible international lessons that can be taken from both current as well as the proposed practice in the Netherlands.

The Wish to Hasten Death in Patients With Life-Limiting Conditions. A Systematic Overview.

CONTEXT: A systematic review of the wish to hasten death among people with life-limiting conditions was published in 2011. Since then, other reviews and primary studies have been published that have added to knowledge regarding the conceptual definition, aetiology and assessment of the wish to hasten death. OBJECTIVES: To provide an updated synthesis of the literature on the wish to hasten death in people with life-limiting conditions. METHODS: An overview of systematic reviews and primary studies was conducted, using an integrative review method. PubMed, CINAHL, Scopus and Web of Science databases were searched, from their inception until 2023. We included all systematic reviews published to date and all primary studies not included in these systematic reviews. RESULTS: Eleven systematic reviews and 35 primary studies were included. We propose that the phenomenon may usefully be considered as existing along a continuum, defined by the extent to which thoughts of dying are linked to action. A total of nine assessment tools have been described. The reported prevalence of the wish to hasten death appears to be influenced by the wording used in assessment instruments, as well as by the cut-off used when applying a particular tool. Depression, pain, functional disability, decreased sense of meaning in life, the sense of being a burden and reduced quality of life are the most widely reported related factors. CONCLUSION: This overview underscores the need for clinical strategies that can identify different manifestations of the wish to hasten death among people with life-limiting conditions.

Should vegans have children? A response to Räsänen.

Joona Räsänen argues that vegans ought to be anti-natalists and therefore abstain from having children. More precisely, Räsänen claims that vegans who accept a utilitarian or rights-based argument for veganism, ought to, by parity of reasoning, accept an analogous argument for anti-natalism. In this paper, I argue that the reasons vegans have for refraining from purchasing animal products do not commit them to abstaining from having children. I provide novel arguments to the following conclusion: while there is good reason to believe that factory farming results in a net disutility and involves treating non-human animals as mere means, there is not good reason to believe that having children results in a net disutility or involves treating the children as mere means. Subsequently, I respond to what I take to be Räsänen's underlying reasoning-that vegans are committed to abstaining from other practices which cause unnecessary suffering. I respond by arguing that this is plausibly false as various practices which cause unnecessary suffering are likely permissible, whereas factory farming is not.

Ketamine Use for Palliative Care in the Austere Environment: Is Ketamine the Path Forward for Palliative Care.

The goal of palliative care is to focus on the holistic needs of the patient and their family versus the pathology of the patient's diagnosis to reduce the stress of illness. U.S. servicemembers deployed to austere environments worldwide have significantly less access to palliative care than in military treatment facilities in the U.S. Preparation for future conflicts introduces the concept of prolonged medical management for an environment where urgent casualty evacuation is impossible. Ketamine is currently widely used for analgesia and anesthesia in the care of military service members and its use has increased in combat zones of Iraq and Afghanistan due to the favorable preservation of respiratory function, minimal changes in hemodynamics, and lower pain scores compared to opioids. Ketamine acts as a non-competitive antagonist on N-methyl-D aspartate (NMDA) receptors. Its anesthesia and analgesic effects are complex and include both presynaptic and postsynaptic neurons in brain and spinal cord. The use of palliative care to minimize suffering should not be withheld due to the logistical boundaries of austere military environments or lack of guidelines for recommended use. The use of ketamine for palliative care is a new clinical management strategy to provide both sedation and pain management for an acute pain crisis or comfort measures for the terminally ill. This makes ketamine an attractive consideration for palliative care when managing critically wounded patients for an extended time.

They do their utmost: promise and limits of palliative care in two refugee camps in Rwanda, a qualitative study.

After often gruelling journeys, some refugees arrive at secure locations with severe injury or illness. Others find themselves shortly thereafter facing a life-limiting health condition. Palliative care has been the focus of recent research, and of academic and aid sector dialogue. In this study, we ask: What are experiences and needs of patients and care providers? What opportunities and obstacles exist to enhance or introduce means of reducing suffering for patients facing serious illness and injury in crisis settings? We present findings of a qualitative sub-study within a larger programme of research exploring moral and practical dimensions of palliative care in humanitarian crisis contexts. This paper presents vignettes about palliative care from refugees and care providers in two refugee camps in Rwanda, and is among the first to provide empirical evidence on first-hand experiences of individuals who have fled protracted conflict and face dying far from home. Along with narratives of their experiences, participants provided a range of recommendations from small (micro) interventions that are low cost, but high impact, through to larger (macro) changes at the systems and societal levels of benefit to policy developers and decision-makers.

When Faith and Health Collide: Expressions of Faith Over the Dangers of COVID-19 by Selected Flagellants in the Philippines.

For almost three years, the COVID-19 pandemic seriously affected society. Mass gatherings were restricted during the surge, including religious activities and other public practices. However, some Filipinos opted to continue their panata (sacred vow) of self-flagellation during this health crisis, thus putting themselves at risk of being inflicted with the virus or being a spreader. This article explores the experience of selected flagellants who continued to fulfill their religious practice amid the pandemic. It draws inspiration from their narratives about their personal experiences of how they faced, struggled, and hoped to battle the "unseen" virus and the criticisms of others for what they did. Using interpretative phenomenological analysis (IPA), their interview transcripts elicit three recurrent themes: Suffering leads to finding God for support, sacred vow as unity to Christ's suffering, and spiritual reward over physical pain. These themes can contribute to future research on how opposing parties should negotiate when faith and health conflict.

Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology.

CONTEXT: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. OBJECTIVES: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. METHODS AND RESULTS: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. CONCLUSIONS: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

NADA Acupuncture in Specialized Palliative Care: Patients' and Family Caregivers' Experiences.

CONTEXT: Over the last 30 years, non-pharmacological treatment with ear acupuncture, including National Acupuncture Detoxification Association (NADA) acupuncture, has become popular in Western society to relieve cancer-related symptoms. OBJECTIVES: This study aim is to explore whether NADA acupuncture plays a role in relieving suffering experienced by patients hospitalized in a specialized palliative care ward and their family caregivers and whether it contributes to their coping skills. METHODS: A qualitative study with a hermeneutic approach utilizing inductive thematic content analysis. Purposeful sampling took place in a specialized palliative care ward in Denmark and all data were collected through semi-structured interviews with patients and family caregivers as either individual or family interviews. RESULTS: A total of 10 patients and 15 family caregivers participated in interviews. Four themes emerged: (1) communication about treatment with NADA acupuncture, (2) relief of suffering generates extra energy and inner strength, (3) sharing the experience with the family is beneficial, and (4) physical and psychological effects after receiving NADA acupuncture. CONCLUSION: Patients in palliative care and their family caregivers experienced relief of suffering after receiving NADA acupuncture, as well as improved well-being, and extra energy and inner strength to cope with their life situation. The ability to share NADA acupuncture gave family caregivers the feeling of being cared for and contributed to feelings of fellowship and togetherness within the family, strengthening their ability to communicate and cope.

Legal assessment of ingrown horns and other horn-related anomalies in cattle and sheep.

Cattle and sheep horns have the potential to grow in such a way that the horn bends toward the animal's head and, if left untreated, may penetrate the skin, causing pressure, pain, and suffering. According to the Swedish Animal Welfare Act, animals must be looked after in a way that prevents ingrown horns; otherwise, the person responsible for the animal may be prosecuted. Here, we present a review of 32 legal cases that occurred in Sweden between 2008 and 2022 for which the charge involved horn-related anomalies in cattle or sheep. The aim being to investigate the nature of these horn-related anomalies and the circumstances under which they occur. Of the legal cases, 53% were discovered during official animal welfare control on farms and 44% at an abattoir during pre-slaughter inspection. These include extreme injuries, e.g. both horns penetrating the periosteum into the skull bone, or a horn penetrating into the eye or oral cavity. The reasons offered by the accused for failing to detect animals with horn-related anomalies included that the animal appeared normal, that it was long-haired, shy, or hard to reach, or that the horns had not undergone gradual growth but had accidentally or suddenly penetrated the skin. Overall, 81% of the cases led to convictions; however, none of these resulted in imprisonment. Reasons for acquittals included insufficient crime description or evidence as to how the horn-related anomaly occurred or of the animal being exposed to suffering. A number of recommendations are provided that could help limit the occurrence of ingrown horns.

A Retrospective Study on the Status of Working Equids Admitted to an Equine Clinic in Cairo: Disease Prevalence and Associations between Physical Parameters and Outcome.

Working equids are often used to exhaustion, living and dying in conditions below minimal welfare standards. Due to their poor welfare status, euthanasia should be considered in certain conditions. The study aimed to describe the population and the disease frequency of the working equids admitted at an equine clinic in Cairo (i.e., Egypt Equine Aid (EEA)) from 2019 to 2022 and identify possible associations between physical parameters at admission and the outcome. Records of 1360 equids admitted at EEA were reviewed. The majority of the admitted equids were horses (65.6%), followed by donkeys (33%), in particular stallions (68.7%), from 1 to 15 years old (74.8%). Hospitalisation was mainly due to wounds (28.9%), orthopaedic problems (27.4%), colic (8.5%), or infectious diseases (7.4%). The majority of the equids were discharged, but 5.1% died on their own, without human intervention, and 23% were euthanised. Text mining revealed the anamnesis's most frequent words were 'accident', 'lameness', and 'wound'. In addition, owners sometimes reported using inappropriate remedies (e.g., firing) before hospitalisation. Multivariable ordinal regression analysis performed between physical parameters and the outcome (ordered based on severity: discharged, euthanasia, and dead) revealed that sex (male vs. female: OR = 1.33; p < 0.05), colour of the mucous membrane (pathological vs. physiological: OR = 1.72; p < 0.01), and capillary refill time (pathological vs. physiological: OR = 1.42; p = 0.02) increased the likelihood of a non-survival outcome. In conclusion, early euthanasia should be considered for these equids, to minimise prolonged suffering. Moreover, owners' education is recommended to guarantee minimal welfare standards to the working equids.

Persons with mental disorders and assisted dying practices in Spain: In response to Ramos et al.

Ramos et al. paper offers a narrative review of Spanish Organic Law 3/2021, which regulates euthanasia, focusing on its application to individuals with mental disorders. Ramos et al. examine the application of legal prerequisites from an ethical-legal perspective to ascertain the conditions under which psychiatric euthanasia might be considered legitimate and compliant with legal stipulations. Nevertheless, it is apparent that the core ethical inquiries linked to this matter have not been exhaustively investigated. The criteria laid out are, in our assessment, still open to further debate and broader deliberation. Our article emphasizes the need for a comprehensive ethical and legal debate in Spain regarding psychiatric euthanasia. Competency assessment is central to the legislation, but there are concerns about the validity of assessment tools and the subjective nature of interviews. Furthermore, defining irreversible suffering in mental health contexts poses challenges. The article advocates for a deeper understanding of the needs of individuals with mental disorders before considering euthanasia and emphasizes the importance of comprehensive care and psychosocial interventions in reducing the desire for euthanasia. Ultimately, it underscores the ethical complexities of euthanasia in mental health and the necessity of prioritizing comprehensive care in addressing these complexities.

Timely dying in dementia: Use patients' judgments and broaden the concept of suffering.

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs' current suffering becomes severe enough to cease all life-sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs' prolonged dying with suffering? Deter early-stage dementia patients from committing preemptive suicide? Sway decision-making surrogates from withholding life-sustaining treatments from patients with middle-stage dementia? Provoke providers' resistance to relinquish their traditional, unilateral authority to determine patients' suffering?

Case report: Organ donation after euthanasia for psychiatric suffering: some of the practical and ethical lessons Martijn taught us.

Euthanasia in psychiatric patients presents unique challenges, especially when combined with organ donation. In this article, the hurdles psychiatric patients might encounter after expressing their wish for organ donation after euthanasia, are discussed and illustrated by the case of Martijn, a 45-year-old psychiatric patient who altruistically donated his organs after euthanasia. Hospital and physician-related factors, including caution in determination of mental capacity, consideration of conflicting interests, and healthcare staff stress are discussed as impediments to organ donation after euthanasia (ODE) in psychiatric patients. The primary objective of this article is to raise awareness among psychiatrists regarding the fact that although the combination of euthanasia and organ donation is an uncommonly performed procedure, it is frequently requested by psychiatric patients. In conclusion, the article advocates for a nuanced approach, respecting patients' altruistic wishes while at the same time addressing challenges associated with ODE in psychiatric suffering. Where possible, and within the current medical, ethical and legal boundaries, the importance of facilitating organ donation without unnecessarily prolonging the suffering of competent psychiatric patients seeking euthanasia is emphasized. The topic calls, for example, for further qualitative research to understand the stakeholders' perspectives to determine the perceived possibilities on the one hand and boundaries on the other.

Moral obligations towards human persons' wellbeing versus their suffering: An analysis of perspectives of moral philosophy.

What do we owe other persons? Are we as much obliged to promote their wellbeing as we are to reduce their suffering? This question is crucial for a range of social institutions and welfare services, and especially for the health services. To address this question the article investigates prominent positions and arguments in moral philosophy. It finds that while classical utilitarianism claims that there is symmetry in the moral obligation with respect to peoples' wellbeing and their suffering, a wide range of other positions and perspectives argue for an asymmetric relationship with stronger moral obligations towards other persons' suffering than towards their wellbeing. This difference in obligations is supported ontologically by basic differences inherent in wellbeing and suffering and axiologically by a relative (gradual) difference in value. The many well-founded arguments for stronger moral obligations towards other persons' suffering than towards their wellbeing has important implications for health policy; especially for priority setting. Avoiding and reducing suffering should have priority to the promotion and enhancement of wellbeing.

Sedation indicated?-rethinking existential suffering: a narrative review.

BACKGROUND AND OBJECTIVE: The indication "existential suffering (ES)" for palliative sedation therapy is included in most frameworks for palliative sedation and has been controversially discussed for decades. The appellative character of ES demands rapid relief and sedation often appears to be the best or only solution. ES is still poorly understood and so often neglected by health care professionals due to a lack of consensus regarding assessment, definition and treatment in the international medical literature. Based on a selective review of the literature on ES we propose a different view on the underlying processes of ES and the resulting consequences on medical treatment. METHODS: A narrative review was performed after PubMed search using key terms related to ES and sedation, covering the period from 1950 to April 2023, additionally a selective search in specialist literature on Existential Analysis. Reverse and forward snowballing followed. The language of analyzed publications was restricted to English and German. KEY CONTENT AND FINDINGS: ES is a multidimensional experience that tends to turn into despair and ultimately into a wish to die due to perceived hopelessness and meaninglessness. Pharmacological treatment or sedation do not meet the holistic needs of existential sufferers. The risk of harmful effects by continuous deep sedation seems to be significantly increased for existentially suffering patients. Professional caregivers are burdened by the appellative character of ES, limited treatment options and perceived empathic distress. Without a holistic understanding of the human condition in palliative care, ES cannot be fundamentally alleviated, and existential sufferers have no opportunity to transform and thus mitigate their condition. The recognition of underlying causes of suffering-moods is facilitated by the comprehensive approach of Existential Analysis. CONCLUSIONS: The presented concept of Existential Analysis and the triad of ES are useful instruments for health care professionals to recognize and support underlying moods of existentially suffering patients. Further studies are required. Comprehensive training for professional caregivers on ES is essential to enable them to reflect on their own existential concerns and finiteness as well as those of patients. Continuous deep sedation for ES must remain the exception, equivalent to a last resort option.

"A rua é nóis": sobre a saudade da partilha do comum / "We are the streetz": about missing the sharing of common things / "La calle somos nosotros": sobre echar de menos una vida compartida

Com base em uma experiência de atendimento psicológico on-line a mulheres negras quilombolas, no contexto da pandemia, pretendemos: 1) refletir sobre casa e rua na realidade da população negra, guiados pelas noções de "forma social escravista" e de "reterritorialização", ambas de Muniz Sodré, destacando, do interior dessas reflexões e a partir das elaborações teóricas de Carl Gustav Jung (no campo da psicologia analítica), e de Achille Mbembe e Muniz Sodré (no campo das relações étnico-raciais), dois conceitos em construção para a compreensão do sofrimento sociorracial: trauma racial e sombra branca; 2) refletir sobre o lugar da "partilha do comum" no cuidado à saúde mental da população negra de zonas rurais e urbanas. Do ponto de vista teórico-metodológico, trabalhamos ao modo de uma comunicação rapsódica, no sentido grego da palavra (raptein = coser): costurando história de caso e proposições conceituais.

Based on an online psychological care experience for black quilombola women in the context of the pandemic, we intend to: 1) reflect upon home and street in the reality of the black population, guided by the notions of "slavery social form" and "re-territorialization", both by Muniz Sodré, highlighting, from within these reflections and from the theoretical elaborations of Carl Gustav Jung (in the field of analytical psychology), and of Achille Mbembe and Muniz Sodré (in the field of ethnic-racial relations), two concepts under construction to understand socio-racial suffering: racial trauma and white shadow; 2) reflect on the place of "sharing of common things" in mental health care for the black population in rural and urban areas. From a theoretical-methodological point of view, we worked in the form of a rhapsodic communication, in the Greek sense of the word (raptein = to sew): weaving together case histories and conceptual propositions.

Con base en una experiencia de atención psicológica en línea con mujeres negras quilombolas en la pandemia, pretendemos: 1) reflexionar sobre hogar y calle en la realidad de la población negra, guiándonos por nociones de "forma social esclavista" y "reterritorialización", de Muniz Sodré, destacando, en de esas reflexiones y a partir de las elaboraciones teóricas de Carl Gustav Jung (en el campo de la psicología analítica), y de Achille Mbembe y Muniz Sodré (en el campo de las relaciones étnico-raciales), conceptos en construcción para comprender el sufrimiento socio-racial: trauma racial y sombra blanca; 2) reflexionar sobre el lugar de "vida compartida" en el cuidado de la salud mental de la población negra de zonas rurales y urbanas. Desde el punto de vista teórico-metodológico, trabajamos sobre la base de una comunicación rapsódica, en el sentido griego de la palabra (raptein = coser): tejiendo el relato del caso y proposiciones conceptuales.