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BackgroundIt has been estimated that someone with a terminal illness in the UK can experience a negative financial impact of up to £16,000 per year (APPG for Terminal Illness, 2019). However, while poverty at the end of life is recognised as a legitimate concern, its magnitude has remained unclear. This research aimed to produce a statistical profile to increase understanding of the risk and prevalence of poverty in the last year of life for people across the UK.MethodsThe analysis was based on data for individuals aged 20 and older from of the UK Household Longitudinal Study, Understanding Society. Mixed-effects binary logistic regression was used to estimate the probability of an individual being in poverty in a given year, based on their age, whether they were in the last 12 months of life, and the interaction between these variables. The estimates were used to produce a risk ratio that could be applied to population-level data on poverty rates and mortality rates. This was repeated for selected subgroups of the population based on geographical location, sex, ethnicity and diagnosis.ResultsThe regression analysis revealed a statistically significant, positive association between being at the end of life and being in poverty (OR=1.6. p<0.001). There was a significant interaction with age (p=0.08), with a stronger association between poverty and mortality for younger respondents.When combined with population-level data, the estimates suggested that in 2019, more than 90,000 people died in poverty in the UK. Among working age people, the risk of experiencing poverty was 34% higher for those in the last 12 months of life than for others in the same age group, while for pensioners it was 23% higher. Elevated risks of poverty at the end of life were also observed among women, people from minority ethnic groups, and those with non-cancer diagnoses prior to death.DiscussionThe findings show that poverty at the end of life is an extensive and wide-reaching issue that affects many people at a time when they are vulnerable and least able to deal with financial or material hardship. In policy terms, the findings draw attention to the importance of ensuring that people are able to access all of the support from the social security system to which they are entitled at the end of life, especially if faced with an unpredictable prognosis and a potentially long period of financial hardship.

Background There are roughly 6,000 individuals incarcerated in the Massachusetts Department of Corrections (MADOC), and in 2025, 32% of these individuals were age 50 and older. Older incarcerated individuals have a higher burden of chronic disease, and caring for them is associated with higher healthcare costs. In 2018, Massachusetts passed legislation enabling medical parole, a process by which an individual can be released due to terminal illness or permanent incapacitation. Existing literature suggests medical parole is underutilized. The aim of this study was to characterize the cause of death of individuals in MADOC custody to determine potential medical parole eligibility and gaps in referrals. Methods We conducted a retrospective analysis of deaths of individuals in MADOC custody between 2021 and 2023 using death records obtained from MADOC and death certificates from the Massachusetts Vital Statistics Program. Cause of death was categorized through structured review of death certificates and supplemental MADOC medical documentation. Results Between January 1, 2021 and December 31, 2023, 87 individuals died in MADOC custody. The primary disease processes leading to death involved infection (28%), complications of chronic disease (25%), and cancer (22%). Nearly half (41.7%) of infection-related deaths were due to COVID-19. The most common causes of death categorized by primary organ system were cardiovascular conditions (26%) and respiratory conditions (25%). The majority of deaths were attributed to acute causes (58%). Conclusions In our study, nearly half of the population died in custody from a chronic condition or complications related to a chronic condition and could have been identified for medical parole eligibility. The majority of individuals died from acute causes, suggesting the need for an expedited review process and expanded eligibility criteria. A small number of correctional facilities and hospitals saw the majority of deaths, and these locations may be ideal targets for future interventions. Further work is needed to compare death data before and after the COVID-19 pandemic, assess barriers to utilization of medical parole, and explore other interventions to decrease the number of deaths in MADOC custody.

Purpose At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings. Therefore, caregiver studies with a population-based approach are needed. We aimed to describe socio-economic characteristics, situational factors, pre-loss grief symptoms, depressive symptoms, caregiver burden, and health status in a general population of caregivers to terminally ill patients. Method We conducted a nationwide population-based cohort study. Caregivers were systematically recruited through patients registered with drug reimbursement for terminal illness in 2012. Data on socio-economic characteristics was mainly obtained from Danish registries, whereas data on situational factors, distress, and health was measured in questionnaires. Results Of patients to responding caregivers (n = 3635), 89 % suffered from cancer, predominantly lung cancer (23 %). Of responding caregivers, 62 % were partners and 29 % were adult children. In total, one third of caregivers reported severe outcome, 15 % reported severe pre-loss grief symptoms, 16.1 % had moderate to severe depressive symptoms, and 12 % experienced high caregiver burden. Partners had the highest levels of pre-loss grief and depressive symptoms, while adult children reported the highest levels of caregiver burden. Conclusions From this cohort, which was estimated to be representative of caregivers to terminally ill relatives in the general population, we found high levels of pre-loss grief, depressive symptoms, and/or caregiver burden in one third of all caregivers. These findings call for increased focus on caregivers’ need of support.

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

Background Anxiety and depression are common in seriously ill patients and may be associated with spiritual concerns. Little research has examined how concerns in different domains of spirituality are related to anxiety and depression. Objective To examine the association of spiritual history and current spiritual well-being with symptoms of anxiety and depression in patients with advanced illness. Design Cross-sectional cohort study Participants Two hundred and ten patients with advanced illness, of whom 1/3 were diagnosed with cancer, 1/3 COPD, and 1/3 CHF. The mean age of the sample was 66 years, and 91% were Christian. Measurements Outcome measures were the Profile of Mood States’ Anxiety Subscale (POMS) and 10-item Center for Epidemiologic Studies Depression Scale (CESD). Predictors were three subscales of the Spiritual History Scale measuring past religious help-seeking and support, past religious participation, and past negative religious experiences and two subscales of the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale measuring the role of faith in illness and meaning, peace, and purpose in life. We conducted multiple regression analyses, controlling for demographics, disease type and severity, self-rated religiousness/spirituality, and frequency of religious attendance and devotion. Results In adjusted analyses, greater spiritual well-being, including both beliefs about the role of faith in illness and meaning, peace, and purpose in life were associated with fewer symptoms of anxiety (P ≤ 0.001) and depression (P < 0.001). Greater past negative religious experiences were associated with more symptoms of anxiety (P = 0.04) and depression (P = 0.004). No other measures of spiritual history were associated with the outcomes. Conclusions In this diverse sample of seriously ill patients, current spiritual well-being and past negative religious experiences were associated with symptoms of anxiety and depression. Healthcare providers should consider asking about current spiritual well-being and past negative religious experiences in their assessment of seriously ill patients with symptoms of anxiety and depression.

There has been little consideration of how adolescents experience parental terminal illness (PTI) and death and any continuing impact it may have on their lives. In particular, limited attention has been given to this group’s perceptions and experiences of support during this period. This study explores the retrospective experiences of six individuals who had a parent diagnosed with a terminal illness (TI) during late adolescence. Their experiences are qualitatively explored in terms of their understanding, processing and adjustment to their parent’s TI and death; both as an individual, and in the context of their wider family and social setting. Interpretative Phenomenological Analysis was employed to analyse participant data. Participants were individuals who had a parent diagnosed with a terminal illness aged 16-18. Four superordinate themes emerged from the data. These were: changing family dynamics, grappling with adolescence and adjustment to loss, barriers to feeling/being supported and living with the consequences. Participants relate the profound impact that PTI during adolescence has had and continues to have on their lives. Study findings provide clinically useful information for healthcare professionals working with bereaved young people and those presently experiencing PTI. Implications are discussed in terms of service provision and design, including therapeutic recommendations for counselling psychologists and other professionals working with this group.

Life-threatening events including terminal illness intensify the search for meaning and incite individuals to get closer to religion. Terminal patients can often find religious practices as helpful as medical therapy for bettering both physical and mental health. The present research aims to explain the interaction between religion, spirituality, and social support in coping with terminal illness among Muslim hepatitis C patients in Pakistan. A semi-structured open-ended interview guide was utilized to collect the data. Participants expressed that the deployment of religious and spiritual beliefs along with socio-emotional support during illness fostered medical therapy. Participants also revealed that belief in God provided them the strength to be steadfast during the terminal stage of the disease. Religious beliefs enabled terminal participants to accept death as an eventual reality and a normal part of their lives. Furthermore, participants put forward their longing for those kinds of religious practices that terminal diseases usually restrained them from receiving. The emotional support stemming from social relationships also improved resilience to cope with the terminal stage of illness. The study concludes that the interplay of religion, spirituality, and social support normalizes the fear of death, lessens pain, and improves resilience among Muslim hepatitis C patients in Pakistan.

Aesthetic experiences can serve as powerful catalysts for emotional, psychological, and spiritual transformation. More recently, video games have drawn attention as an artistic medium in their own right, capable of inspiring profound transformation in ways similar to conventional art forms. Video games, like other artistic media, can be seen as thresholds to transformative aesthetic experiences, rendering them especially suitable for analysis through the lens of Victor Turner’s work on liminality and the liminoid. This article employs these concepts as a framework to assess video games as liminoid structures in which players can engage with simulated liminal experiences and undergo transformative aesthetic experiences through ritual-like, interactive play. In particular, it integrates concepts from games studies to explore how video games have uniquely liminoid characteristics that distinguish them from other liminoid entities, including art and leisure activities. As a case study, this article also explores manifestations of liminality and the liminoid in the setting, narrative, and gameplay of indie video game Before Your Eyes. It examines how these elements act synergistically to provide a nuanced, intimate depiction of terminal illness, coming of age, and existential judgment in the afterlife, encouraging players to surrender themselves to the emotional world portrayed within the game and become transformed in the process.

The Korean government has implemented a pilot project that introduces a new type of hospice care program called “Consultative Hospice Care” (COHC) since August 2017. The COHC is a new type of hospice program for terminally ill patients in acute care wards, which is different from the Independent Hospice Unit (IHU) care. This study aimed to compare the characteristics of two groups of hospice patients: COHC care only and both IHU care and COHC groups. Healthcare claim data from 1 April 2018 to 31 March 2020 were retrieved from the HIRA data warehouse system. The main outcome variable was patients receiving COHC only or both COHC and IHU care. The total number of hospice patients was 6482. A multivariate logistic regression analysis was used. Of 6482 hospice care recipients, 3789 (58.5%) received both COHC and IHU care. Those who received both COHC and IHU care were significantly associated with several factors: period from the first evaluation to death (adjusted odds ratio (aOR), 1.026; 95% confidence internal (CI), 1.024–1.029; p < 0.0001), disease severity measured by the Charlson Comorbidity Index (aOR, 1.032; CI, 1.017–1.047; p < 0.0001), consciousness (aOR, 3.654; CI, 3.269–4.085; p < 0.0001), and awareness of end-stage disease (aOR, 1.422; CI, 1.226–1.650; p < 0.0001). The COHC program had a critical role in hospice delivery to terminally ill patients. Policymakers on hospice care need to establish plans that promote efficient hospice care delivery systems.