Past trends and future projections of palliative care needs in Chile: analysis of routinely available death registry and population data.

BACKGROUND: The number of people with palliative care needs is projected to increase globally. Chile has recently introduced legislation for universal access to palliative care services for patients with severe and terminal illnesses, including non-cancer conditions. We aimed to estimate the number of people affected by serious health-related suffering and need for palliative care in Chile to 2050. METHODS: We used data on all deaths registered in Chile between 1997-2019 and population estimates for 1997-2050. We used Poisson regression to model past trends in causes of death adjusted by age, sex and population estimates, to project the number of deaths for each cause from 2021 to 2050. We applied the Lancet Commission on Palliative Care and Pain Relief weights to these projections to identify decedents and non-decedents with palliative care needs. RESULTS: Population palliative care needs in Chile are projected to increase from 117 (95% CI 114 to 120) thousand people in 2021 to 209 (95% CI 198 to 223) thousand people in 2050, a 79% increase (IRR 1.79; 95% CI 1.78-1.80). This increase will be driven by non-cancer conditions, particularly dementia (IRR 2.9, 95% CI 2.85-2.95) and cardiovascular conditions (IRR 1.86, 95% CI 1.83-1.89). By 2050, 50% of those estimated to need palliative care will be non-decedents (not expected to die within a year). CONCLUSIONS: Chile will experience a large increase in palliative care needs, particularly for people with dementia and other non-cancer conditions. Improved availability of high-quality services, expanded clinician training and new sustainable models of care are urgently required to ensure universal access to palliative care.

Well-Being Therapy in systemic sclerosis outpatients: a randomized controlled trial.

OBJECTIVES: Systemic Sclerosis (SSc) patients have psychological distress and poor well-being and need a tailored treatment. Psychological interventions, rarely tested for efficacy, showed poor benefits. The present randomized controlled trial tested the efficacy of Well-Being Therapy (WBT) in SSc patients. METHODS: Thirty-two outpatients were randomized (1:1) to WBT (n = 16) or Treatment As Usual (i.e. routine medical check-ups) (TAU) (n = 16). Primary outcome was well-being. Secondary outcomes included functional ability related to SSc, psychological distress, mental pain, suffering. All participants were assessed at baseline (T0). The WBT group was assessed after two months (end of WBT session 4) (T1), after four months (end of WBT session 8) (T2), after seven months (3-month follow-up) (T3), and after 10 months (6-month follow-up) (T4). The TAU group was assessed two (T1), four (T2), seven (T3), and ten (T4) months after baseline. RESULTS: WBT produced a significant improvement in subjective well-being (p ≤ 0.001), personal growth (p = 0.006), self-acceptance (p = 0.003) compared with TAU, maintained at T3 as what concerns subjective well-being (p = 0.012). WBT produced greater decrease in psychological distress (p = 0.010), mental pain (p = 0.010), suffering (p ≤ 0.001) compared with TAU, maintained at T4 as what concerns suffering (p ≤ 0.001). Participants reported high satisfaction with WBT. CONCLUSION: The study provides preliminary evidence on the benefits of WBT as short-term approach for in- and out-patient SSc healthcare paths. Studies with larger samples are needed to have the evidence for recommending WBT to SSc patients.

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.

Exposure to tungsten particles via inhalation triggers early toxicity marker expression in the rat brain.

OBJECTIVE: Our work is focused on tungsten, considered as an emerging contaminant. Its environmental dispersion is partly due to mining and military activities. Exposure scenario can also be occupational, in areas such as the hard metal industry and specific nuclear facilities. Our study investigated the cerebral effects induced by the inhalation of tungsten particles. METHODS: Inhalation exposure campaigns were carried out at two different concentrations (5 and 80 mg/m3) in single and repeated modes (4 consecutive days) in adult rats within a nose-only inhalation chamber. Processes involved in brain toxicity were investigated 24 h after exposure. RESULTS AND DISCUSSION: Site-specific effects in terms of neuroanatomy and concentration-dependent changes in specific cellular actors were observed. Results obtained in the olfactory bulb suggest a potential early effect on the survival of microglial cells. Depending on the mode of exposure, these cells showed a decrease in density accompanied by an increase in an apoptotic marker. An abnormal phenotype of the nuclei of mature neurons, suggesting neuronal suffering, was also observed in the frontal cortex, and can be linked to the involvement of oxidative stress. The differential effects observed according to exposure patterns could involve two components: local (brain-specific) and/or systemic. Indeed, tungsten, in addition to being found in the lungs and kidneys, was present in the brain of animals exposed to the high concentration. CONCLUSION: Our data question the perceived innocuity of tungsten relative to other metals and raise hypotheses regarding possible adaptive or neurotoxic mechanisms that could ultimately alter neuronal integrity.

Is Suffering a Useless Concept?

"Suffering" is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which "suffering" is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are often getting at something ethically important. But this is where the work of ethics begins, not where it ends.

Investigating the role of adversity and benevolence beliefs in predicting prosociality.

BACKGROUND: Does experiencing adversity engender kindness, and if so, for whom? Two studies tested the hypothesis that adversity predicts increased pro-social outcomes, and that this relationship is strongest for individuals who view others as good and trustworthy, or benevolent. METHOD: In Study 1, a cross-sectional survey design was utilized, and in Study 2 a longitudinal survey was conducted. RESULTS: In Study 1 (N = 359), the number of lifetime adverse life events was associated with increased volunteering, empathic concern, and self-reported altruism. The association of adversity and altruism was stronger for those with greater benevolence beliefs. In Study 2 (N = 1157), benevolence beliefs were assessed, and in subsequent years, adverse life events were reported. The number of past-year adverse life events predicted more volunteering and charitable involvement, but only among people with high benevolence beliefs. CONCLUSION: Exposure to adversity may be associated with increased pro-social behavior among those with higher benevolence beliefs. In part, this could be due to benevolence beliefs increasing the expectation that one's efforts will be appreciated and reciprocated.

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.

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.

Nonphysical Suffering: An Under-Resourced and Key Role for Hospice and Palliative Care Social Workers.

This article highlights recent research findings that have significance for hospice and palliative care social work in Canada, and for the field of hospice and palliative care more broadly. A 2020 discourse analysis study examined the experiences of 24 interdisciplinary palliative care clinicians across Canada in their work with patients' nonphysical suffering. Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients' nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients' nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients' needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients' nonphysical suffering due to the psychosocial focus of their role. The need for specialist social workers to be included and adequately resourced on hospice and palliative care teams across diverse settings in Canada is evident.

Why do people engage with the suffering of strangers? Exploring epistemic, eudaimonic, social, and affective motives.

Reading violent stories or watching a war documentary are examples in which people voluntarily engage with the suffering of others whom they do not know. Using a mixed-methods approach, we investigated why people make these decisions, while also mapping the characteristics of strangers' suffering to gain a rich understanding. In Study 1 (N = 247), participants described situations of suffering and their reasons to engage with it. Using qualitative thematic analysis, we developed a typology of the stranger (who), the situation (what), the source (how), and the reason(s) for engaging with the situation (why). We categorised the motives into four overarching themes - epistemic, eudaimonic, social, and affective - reflecting diversity in the perceived functionality of engaging with a stranger's suffering. Next, we tested the robustness of the identified motives in a quantitative study. In Study 2, participants (N = 250) recalled a situation in which they engaged with the suffering of a stranger and indicated their endorsement with a variety of possible motives. Largely mirroring Study 1, Study 2 participants engaged to acquire knowledge, for personal and social utility, and to feel positive and negative emotions. We discuss implications for understanding the exploration of human suffering as a motivated phenomenon.

[New recommendations on palliative sedation]. / Neue Empfehlungen zur palliativen Sedierung.

Palliative sedation aims to relieve refractory suffering in patients with life-limiting disease. The 2009 framework on palliative sedation of the European Association for Palliative Care (EAPC) has recently been updated. Recommendations have also been formulated by the research group SedPall in Germany. This article describes the social and ethical complexity of decision-making and summarises the recommendations. Patient autonomy is emphasised. Refractoriness of the suffering should be determined jointly by physician and patient. Sedation should be proportional, that is to say, its form and duration should be adapted to the patient's individual situation. The decision on palliative sedation and that on hydration involve two separate decision-making processes. Midazolam should be used as first choice. Particular attention should be paid to the patient's relatives/significant others and the treating team.

Excruciating existential suffering and complicated grief: The essence of surviving the suicide of a son or daughter.

BACKGROUND: Suicide is the fourth most common cause of death for the 15-29 age group. Research on the impact of suicide on parents is scarce and, therefore, poorly understood. AIM: To explore parents' experiences who have lost a son or a daughter due to suicide and their experience of the services available to them. METHODS: This phenomenological study involved 1-2 interviews with ten parents aged 40-65, seven mothers and three fathers in all 13 interviews. The age range of their sons and daughters was 17-37 years when they died. RESULTS: For the parents, losing a son or a daughter to suicide is an overwhelming life experience characterised by Excruciating existential suffering and complicated grief where they are confronted with deep meaning-making and existential questions without answers since the person who can answer most of them is no longer alive. They, therefore, felt stuck in their grief for up to 4 years. The initial experience was an immense paralysing shock and sense of unreality. The subsequent period was a blur, and they were numb. Then, their psyche and bodies collapsed, and for a long time, they felt no grief processing was taking place. They sorely needed long-term professional trauma-informed support and felt that, in too many cases, they had to reach out for help themselves. They would have liked to see the healthcare system embrace them with more open arms, offer help and be met with information and individualised support. CONCLUSIONS: Standard operating procedures must be installed to support suicide-bereaved parents better. Long-term professional support and trauma-focused care are required following such major trauma, and providing such support could help to reduce their adverse health impacts. Nurses and other health professionals must be better educated on existential suffering in this context.

The impact of moral resilience on nurse turnover intentions: the mediating role of job burnout in a cross-sectional study.

BACKGROUND: High nursing staff turnover is a critical issue that negatively impacts the quality of care and patient safety. Turnover intentions, a key predictor of actual turnover, reflect an individual's likelihood of leaving their current position. Understanding the underlying mechanisms driving nurse turnover intentions is crucial for developing targeted interventions to stabilize the nursing workforce globally. OBJECTIVES: This study aims to explore the relationship between moral resilience, job burnout, and turnover intentions among nurses, focusing on the mediating role of job burnout in this relationship. DESIGN: This study employed a quantitative, cross-sectional design. METHODS: A convenience sample of 322 registered nurses was recruited from two tertiary hospitals in China between August and October 2023. Data were collected using the Chinese version of the Rushton Moral Resilience Scale (Chi-RMRS), the Maslach Burnout Inventory (MBI), and the Turnover Intention Scale. Data analyses were conducted using SPSS 26.0 and Amos 21.0. The study followed the STROBE guidelines for observational research. ETHICAL CONSIDERATION: Before the commencement of data collection, the Institutional Review Board of Hunan Traditional Chinese Medical College (YXLL202401004) granted ethical approval. RESULTS: The proposed model exhibited an excellent fit to the data, with fit indices as follows: χ2/df = 1.819, CFI = 0.977, TLI = 0.961, RMSEA = 0.072 (90% confidence interval [CI]: 0.033 to 0.107). The structural equation model revealed that moral resilience was inversely associated with job burnout and turnover intentions. Furthermore, job burnout fully mediated the relationship between moral resilience and turnover intentions (ß = -0.473, p = 0.007). Further analysis indicated that the depersonalization component of job burnout was the sole mediator in the relationship between moral resilience and turnover intention (ß = -3.934, 95% CI [-5.837, -1.932]). CONCLUSION: The findings indicate that moral resilience among nurses is negatively associated with turnover intentions, with this effect fully mediated by the depersonalization dimension of job burnout. Enhancing moral resilience in nurses may be valuable strategy for healthcare administrators to mitigate job burnout and subsequently reduce turnover intentions.

The Doctor-Patient Relationship, Partnership Theory, and the Patient as Partner: Finding a Balance Between Domination and Partnership.

It is perhaps most useful to approach the Doctor-Patient relationship (DPR) by admitting that it's complicated. We review some of the strategies that have been employed to mitigate this complexity, zeroing in on one that promises to capture the main features of the DPR without eliminating some of its more important, existential components; pieces of the puzzle that must be retained if we are to avoid oversimplification and the errors that can arise by ignoring important foundational properties. We believe that a useful way to look at the DPR and to capture essential features that must be balanced in the process is provided by Partnership Theory and its definition in terms of the so-called domination and partnership systems. We apply this theory to the DPR and investigate the implications of this application to health care. We see that in the absence of mitigating circumstances, adoption of the patient-as-partner model serves healthcare well and is flexible enough to accommodate circumstances that dictate modifications.

Palliative care, COVID-19, and the suffering quotient.

OBJECTIVES: The COVID-19 pandemic presented many challenges for patients with palliative care needs and their care providers. During the early days of the pandemic, visitors were restricted on our palliative care units. These restrictions separated patients from their families and caregivers and led to considerable suffering for patients, families, and health-care providers. Using clinical vignettes that illustrate the suffering caused by visiting restrictions during the pandemic, the introduction of a new concept to help predict when health-care providers might be moved to advocate for their patients is introduced. METHODS: We report 3 cases of patients admitted to a palliative care unit during the COVID-19 pandemic and discuss the visiting restrictions placed on their families. In reviewing the cases, we coined a new concept, the "Suffering Quotient" (SQ), to help understand why clinical staff might be motivated to advocate for an exemption to the visiting restrictions in one situation and not another. RESULTS: This paper uses 3 cases to illustrate a new concept that we have coined the Suffering Quotient. The Suffering Quotient (SQ) = Perceived Individual (or small group) Suffering/Perceived Population Suffering. This paper also explores factors that influence perceived individual suffering (the numerator) and perceived population suffering (the denominator) from the perspective of the health-care provider. SIGNIFICANCE OF RESULTS: The SQ provides a means of weighing perceived patient and family suffering against perceived contextual population suffering. It reflects the threshold beyond which health-care providers, or other outside observers, are moved to advocate for the patient and ultimately how far they might be prepared to go. The SQ offers a potential means of predicting observer responses when they are exposed to multiple suffering scenarios, such as those that occurred during the COVID-19 pandemic.

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.

Palliative Care in Adult Congenital Heart Disease-Associated Advanced Heart Disease.

The practice of palliative care (PC) strives to mitigate patient suffering through aligning patient priorities and values with care planning and via improved understanding of complex physical, psychosocial, and spiritual stressors and dynamics that contribute to patient-centered outcomes. Through representative 'case examples' and supportive data, the role and value of a PC consultant, within the framework of a comprehensive adult congenital heart disease (ACHD) team caring for ACHD with advanced heart disease, are reviewed.

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.

An epistemology of empathy and modern methods of social research: Intimations of the mind and early Chicago sociology.

Empathic qualitative methods have become emblematic of early Chicago sociology. Yet methods were not formalized through the early 20th century and empathy was not in usage as a term. Only at mid-20th century did methodological formalization in sociology begin to occur, and an additional quarter-century passed before writing about empathy in sociological methods began to crystallize. Nevertheless, a portion of early Chicago sociologists, assimilating pragmatist thought, established a framework for the deployment of empathic acumen. Because empathy involves understanding others, it is argued that it is central to the study of social life. The article contends that understanding empathy must be as central to the social scientist's knowledge as it is to the effective deployment of research methods: a competent quest to generate knowledge about social life is premised on empathy. To heighten awareness of empathy, an epistemology is necessary. To this end, the article examines empathy as situated by a set of organizational and historical conditions that account for its origin and ascendance as a prescriptive characteristic of sociological work. The author draws attention to the significance of suffering and suggests that its religious precepts are transmuted for the conditions under which sociology develops in turn-of-the-century Chicago.

A Post-reflective Examination of the Physical and Mental Health Suffering During COVID-19 Through the Lens of Christ's Kenotic and Redemptive Act.

The COVID-19 global pandemic has brought unprecedented physical and mental health challenges to many, making the exploration of the spiritual dimension of suffering increasingly meaningful and relevant. Pope John Paul II's theologico-pastoral approach in Salvifici Doloris (SD) sheds light on how spiritual reflections and pastoral care anchored on the theology of Jesus Christ's sufferings can be put together to contribute to post-COVID-19 reflections. Given this context, this paper explores the perceptions and coping mechanisms of COVID-19 patients as they navigate the challenges of their illness. By examining patient experiences gleaned from medical and scientific journals, the study underscores the necessity of supporting individuals suffering from various diseases. As John Paul II thoughtfully remarks in Salvifici Doloris, there is a profound need to address patients' inquiries about "the cause, the reason, and equally, the purpose of suffering, and, in brief, a question about its meaning." Taking this into account, this paper contextualizes the theology of suffering articulated by Pope John Paul II in SD within the experiences of patients who contracted COVID-19 during the global pandemic. To embark on this discussion, the following themes about suffering are expounded: First, Insights into the Weight of Suffering Among Persons who Contracted COVID-19. Second, Understanding of Suffering in Salvifici Doloris, and Third, The Salvific Meaning of Suffering in COVID-19 and its Transformative Experience.