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1.
Camb Q Healthc Ethics ; : 1-26, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38716646

RESUMO

A life of the mind can be lived only by creatures who know that they have minds. We call these creatures "persons," and currently, all such persons THAT we know OF are "alive" in the biological sense. But are there, or could there be, either in the future or elsewhere in the universe, creatures with "a life of the mind" that are not "alive" in the sense that we humans usually understand this term today?

2.
Artigo em Inglês | MEDLINE | ID: mdl-38776040

RESUMO

This article aims to renew the discussion about meaning in the field of psychology. A model is presented that, contrary to the classical view of meaning as an entity taken for granted, explains the dynamics through which it comes to be constituted, opening itself to the possibility of being experienced, as a psychological reality. The autoethnographic analysis carried out by von Fircks (IBPS 53(4):632-643, 2023) is used as example to show how such a model enables an understanding of local phenomena through the comprehension of the semiotic dynamics underlying them. Finally, this paper offers insights into the mechanisms that underlie the field of possibility of meaning-making processes, thus of human experience.

3.
Inquiry ; 61: 469580241246476, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38641976

RESUMO

This article aims to estimate the Value per Statistical Life (VSL) and Value per Statistical Life Year (VSLY) at the sub-national level, which can be used to calculate the economic impact of health and environmental problems. We estimate the value of life for Mexico and its 32 states, grouped into 5 regions for 2021. We used the OECD's guidelines on "Mortality Risk Valuation in Environment, Health and Transport Policies," which applies the measure of Willingness to Pay (WTP) and Cost-Benefit Analysis (CBA). Mexico's overall VSL of $2 000 000 USD in 2021 showcases the value placed on human life. The variation in VSL across the 32 states, with Chiapas having the lowest VSL of $400 000 USD and Mexico City boasting the highest VSL of $3 300 000 USD highlights the different levels of regional development and people's willingness to pay to reduce the risk of mortality. Our estimates of VSL and VSLY have the potential to contribute to the evaluation of public policies in the fields of health and the environment. Monetizing human life through these estimates can offer valuable insights to policymakers at both the national and sub-national levels. By quantifying the economic value placed on human life, this paper helps decision-makers prioritize investments, assess the cost-effectiveness of interventions, and allocate resources to maximize societal well-being.


Assuntos
Políticas , Saúde Pública , Humanos , Análise Custo-Benefício
4.
Eur J Health Econ ; 2024 Feb 27.
Artigo em Inglês | MEDLINE | ID: mdl-38411845

RESUMO

The US Inflation Reduction Act (IRA) prohibits the Centers for Medicare and Medicaid Services (CMS) from using standard quality-adjusted life-years or other value assessment methods that discriminate against the aged, terminally ill, or disabled when setting maximum fair prices for prescription drugs. This policy has reignited interest in methods for assessing value without discrimination. Equal value of life-years gained (EVL), healthy years in total (HYT), and Generalized Risk-Adjusted Cost-Effectiveness (GRACE) have emerged as proposals. Neither EVL nor HYT rests on well-articulated microeconomic foundations. We show that they produce decisions that are inconsistent over time in a variety of ways, including: (1) failure to support additivity and indirect comparison in cases where the standard-of-care therapy changes over time; (2) strictly negative value of survival gains that accrue from a new, better standard-of-care, particularly for the disabled themselves; (3) unbounded average value of survival gains; and (4) non-convex survival preferences. We propose an alternative method that relies on GRACE and its microeconomic foundations.

5.
Patient Educ Couns ; 119: 108075, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37995489

RESUMO

OBJECTIVE: In the shared decision-making (SDM) process for potential early phase clinical cancer trial participation, value clarification is highly recommended. However, exploration and discussion of patient values between patients and oncologists remains limited. This study aims to develop an SDM-supportive intervention, consisting of a preparatory online value clarification tool (OnVaCT) and a communication training. METHODS: The OnVaCT intervention was developed and pilot-tested by combining theoretical notions on value clarification, with interview studies with patients and oncologists, focus groups with patient representatives and oncologists, and think aloud sessions with patients, following the Medical Research Council (MRC) framework for complex interventions. These human-centered methodologies enabled a user-centered approach at every step of the development process of the intervention. RESULTS: This study shows relevant patient values and oncologists' perspectives on value exploration and discussion in daily practice. This has been combined with theoretical considerations into the creation of characters based on real-life experiences of patients in the OnVaCT, and how the tool is combined with a communication training for oncologists to improve SDM.


Assuntos
Tomada de Decisão Compartilhada , Neoplasias , Humanos , Neoplasias/terapia , Pesquisa , Grupos Focais , Comunicação , Participação do Paciente , Tomada de Decisões
6.
Rev. bioét. (Impr.) ; 32: e3629PT, 2024.
Artigo em Português | LILACS-Express | LILACS | ID: biblio-1559363

RESUMO

Resumo O direito à morte digna é majoritariamente ignorado pelo ordenamento brasileiro. Essa invisibilidade do processo de finitude e suas consequências são tema deste estudo, que objetiva realizar um levantamento exploratório para identificar pontos relevantes que devem ser desenvolvidos para garantir um processo de finitude digno. Foram analisadas 50 publicações, mediante levantamento online e físico de obras publicadas até março de 2023. Os estudos analisados expressam preocupação com dilemas éticos do cuidar do ser humano em finitude, mas não analisam formas existentes de tutela da finitude nem quais searas ainda são carentes de normatização para dar eficácia a esse cuidado. Espera-se que esta pesquisa contribua para fortalecer o olhar crítico ao tema, considerando as atuais tutelas da finitude, os limites legais do Estado e os potenciais passos futuros para fazer avançar os estudos aplicados à atualização prática do ordenamento brasileiro.


Abstract The right to a dignified death is largely overlooked by Brazilian law. This neglect of the end-of-life process and its ramifications is the focus of this study, which aims at an exploratory survey to identify pertinent aspects requiring development to ensure a dignified end-of-life experience. In total, 50 publications were examined with online and physical surveys of works published up to March 2023. They express concerns regarding ethical dilemmas in caring for individuals nearing the end of life, yet they do not delve into existing mechanisms for safeguarding end-of-life dignity or identify areas that still lack standardization to ensure effective care. This study should contribute to the enhancement of critical perspectives on the issue of end-of-life experiences, considering current safeguards, the legal boundaries set by the State, and potential future strides toward advancing studies aimed at the practical update of the Brazilian legal system.


Resumen El derecho a una muerte digna es ampliamente ignorado por el ordenamiento jurídico brasileño. Esta invisibilidad del proceso de finitud y sus consecuencias son el objeto de este estudio, que tiene como objetivo realizar una encuesta exploratoria para identificar los puntos relevantes que deben desarrollarse para garantizar un proceso de finitud digno. Se analizaron 50 publicaciones a través de una encuesta online y física de obras publicadas hasta marzo de 2023. Los estudios analizados expresan preocupación por los dilemas éticos de la atención a seres humanos en finitud, pero no analizan las formas de protección a la finitud existentes ni cuáles son las áreas que aún necesitan regulación para hacer efectiva esta atención. Se espera que esta investigación contribuya a fortalecer la visión crítica de la finitud, considerando la protección actual de la finitud, los límites jurídicos del Estado y los posibles pasos futuros para avanzar en los estudios aplicados a la actualización práctica del sistema jurídico brasileño.

7.
Asian Nurs Res (Korean Soc Nurs Sci) ; 17(5): 253-258, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37951497

RESUMO

PURPOSE: Heart failure (HF) is a highly recurrent disease with a high sudden death rate and a substantial influence on disease-related quality of life (QOL). Social support, symptom distress, care needs, and meaning in life all have significant impacts on QOL. We hypothesized that meaning in life plays a mediating role in the relationship of social support, symptom distress, and care needs with QOL among patients with chronic HF. METHODS: Based on cross-sectional analysis, we recruited 186 HF outpatients who completed structured questionnaires for social support, symptom distress, care needs, meaning in life, and QOL. Structural equation modeling was used to analyze the mediating role of meaning in life in the relationship of social support, symptom distress, and care needs with QOL. RESULTS: The final model showed good model fit. Meaning in life was associated with global QOL (ß = 0.18, p = .032). Although symptom distress (ß = -0.26, p = .005) and care needs (ß = -0.36, p = .021) were negatively associated with global QOL, meaning in life played a partial mediating role between symptom distress and global QOL (ß = -0.02, p = .023) and between care needs and global QOL (ß = -0.07, p = .030). However, meaning in life played a complete mediating role between social support and global QOL (ß = 0.08, p = .047). The model showed that meaning in life, symptom distress, and care needs explained 50% of global QOL. CONCLUSIONS: In patients with chronic HF, meaning in life played a mediating role in the relationship of social support, symptom distress, and care needs with QOL. Implementing an intervention to enrich meaning in life may help patients manage the issues caused by symptoms and alleviate their unmet needs.


Assuntos
Insuficiência Cardíaca , Qualidade de Vida , Humanos , Estudos Transversais , Apoio Social , Inquéritos e Questionários
8.
Accid Anal Prev ; 190: 107171, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37329841

RESUMO

Estimating the value of non-market goods, such as reductions in mortality risks due to traffic accidents or air pollution, is typically done using stated choice (SC) data. However, issues with potential estimation biases due to the hypothetical nature of SC experiments arise, as protest choices are common and survey engagement is not constant across respondents. Further, if respondents choose to use different choice mechanisms and this is not considered, the results may also be biased. We designed an SC experiment to estimate the willingness to pay (WTP) for mortality risk reductions, that allowed us to simultaneously estimate the WTP to reduce the risk of traffic accident deaths and cardiorespiratory deaths due to air pollution. We formulated and estimated a multiple heuristic latent class model that also considered two latent constructs: Institutional Belief, to consider protest responses, and survey Engagement as a class membership covariate. We found, first, that individuals with lower institutional belief gave a higher probability of choice to the status-quo alternative, shying away from programs involving governmental action. Second, that not identifying respondents who do not appropriately engage in the experiment, biased the WTP estimators. In our case WTP decreased up to 26% when two different choice heuristics were allowed for in the model.


Assuntos
Acidentes de Trânsito , Heurística , Humanos , Acidentes de Trânsito/prevenção & controle , Inquéritos e Questionários , Viés
9.
Aging Health Res ; 3(3): 100151, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37361545

RESUMO

Background: Earlier studies have focused on the age-group-wise health burden of COVID-19 while few studies have focused on the gender-wise analysis of the burden of COVID-19. The present study estimated the health burden and value of premature mortality from COVID-19 based on gender and age. Methods: This study was based on secondary data collected from several sources of the government of India. To quantify the health burden, the disability-adjusted life years (DALY) method was used. An abridged life table was used to estimate the fall in life expectancy due to COVID-19. The value of premature mortality was estimated by using the human capital approach. Results: Among COVID-19 cases, 65.08% were males and 34.92% were females. The overall health burden caused by COVID-19 was 19,24,107 DALY in 2020, 43,40,526 DALY in 2021, and 8,08,124 DALY in 2022. The health burden per 1000 males was more than double that per 1000 females. This was due to higher rates of infection and case fatality rate among males compared to females. The age group 60-64 years experienced the highest loss of healthy life years per 1000 people, while the age group 55-59 years had the highest overall loss. Due to additional deaths from COVID-19, life expectancy decreased by 0.24 years in 2020, 0.47 years in 2021, and 0.07 years in 2022. The total value of premature death in the first three years of the COVID-19 pandemic amounted to 15,849.99 crores INR. Conclusion: In India, males and the older population were more susceptible to the impact of COVID-19.

10.
Health Econ ; 32(5): 1040-1063, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36670275

RESUMO

Policymakers in low and lower-middle income countries often face difficult trade-offs between saving lives and livelihoods, as exemplified by the COVID-19 pandemic. Yet, evidence regarding the preferences of the population is often lacking in such settings. In this paper, I estimate the value of an additional year of life expectancy in Tanzania using information on subjective well-being and population mortality. More specifically, I combine age-sex specific subnational estimates of remaining life expectancy with data from a representative household survey, which includes information on consumption expenditures and life satisfaction. This information is then carried forward into a life satisfaction regression to estimate the trade-off between consumption and an additional year of life expectancy. The results imply that a representative individual from the sample would be willing to trade off around 9% of their annual consumption expenditure to obtain an additional year of remaining life expectancy. The estimated values are close to those derived from calibrated models based on different elicitation methods, such as revealed preferences. This suggests that life satisfaction measures could be useful in deriving estimates of the value of longevity changes in environments where traditional methods, such as estimating compensating wage differentials, are difficult to apply.


Assuntos
COVID-19 , Pandemias , Masculino , Feminino , Humanos , Tanzânia , Expectativa de Vida , Satisfação Pessoal
11.
Chinese Medical Ethics ; (6): 573-577, 2023.
Artigo em Chinês | WPRIM (Pacífico Ocidental) | ID: wpr-1005710

RESUMO

Medical students differ greatly in their thinking and cognition of the value and pursuit of life existence. The mainstream values are positive and pragmatic, but they are also characterized by decentralization, diversification, individualization and variability. Value education needs to be object-centered, take care of students’ individual lives, understand and answer their real questions to be more accurate and effective. In the intelligent technology society, the education of life value of medical students in the ideological and political courses should rely on the intelligent technology platform to achieve the precise coupling of object and value goal through the form of question exchange. It is necessary to transcend the limitations of medical science perspective, realize accurate life value education, face the nihilistic challenge of life value, understand the systematic and dialectical significance of life events, and return to the original intention and mission of medical science to take care of life itself.

12.
Best Pract Res Clin Obstet Gynaecol ; 85(Pt B): 149-158, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36443158

RESUMO

Infertility is a medical condition that can be overcome, thanks to advances in medically assisted reproductive (MAR) therapies. Despite the ultimate measure of MAR efficacy being the birth of a new human being, there are ethical and methodological questions as to which outcome best translates the value of MAR in cost-effectiveness analyses. Many authors favour cost per life birth outcomes instead of more traditional cost per quality-adjusted life years (QALYs), which raises generalizability issues for decision-makers. Nonetheless, infertility and infertility treatments substantially differ from other health conditions and health treatments, particularly in the way they affect the quality of life of the infertile couple. Collecting quality of life measures in infertility and pregnancy is also surrounded by challenges not easily overcome. We reflect on cost-effectiveness methods applied to MAR technologies, on ethical considerations for valuing a MAR-generated life, and on its broader societal value for consideration by decision-makers.


Assuntos
Infertilidade , Qualidade de Vida , Gravidez , Feminino , Humanos , Nascido Vivo , Técnicas de Reprodução Assistida , Infertilidade/terapia
14.
BMC Med Ethics ; 23(1): 94, 2022 09 20.
Artigo em Inglês | MEDLINE | ID: mdl-36127668

RESUMO

BACKGROUND: In the Netherlands, patients have the legal right to make a request for euthanasia to their physician. However, it is not clear what it means in a moral sense for a physician to receive a request for euthanasia. The aim of this study is to explore the moral values of physicians regarding requests for euthanasia. METHODS: Semi-structured interviews were conducted with nine primary healthcare physicians involved in decision-making about euthanasia. The data were inductively analyzed which lead to the emergence of themes, one of which was about values regarding end-of-life decisions. RESULTS: Four clusters of values related to euthanasia requests are described: values related to 1) the patient; 2) the family; 3) the physician; and 4) life and death. The data show that the participants value patient autonomy as a necessary but not sufficient condition for meeting a euthanasia request. A good relationship with the patient and the family are important. For the physician, the values physician autonomy, responsibility, understanding the patient and relief of suffering play a role. Life as an intrinsic good and a peaceful death are also important values. CONCLUSION: This study shows that next to patient autonomy and the relationship with the patient and the family, it is important for the participants to act in accordance with their professional values and to do justice to values related to life and death. The awareness of going against the intrinsic value of life is crucial, even if performing euthanasia may result in a feeling of relief or gratitude afterwards.


Assuntos
Eutanásia , Médicos , Humanos , Princípios Morais , Países Baixos , Pesquisa Qualitativa
15.
Orphanet J Rare Dis ; 17(1): 157, 2022 04 05.
Artigo em Inglês | MEDLINE | ID: mdl-35382853

RESUMO

Conventional cost-effectiveness analysis-i.e., assessing pharmaceuticals through a cost per quality-adjusted life year (QALY) framework-originated from a societal commitment to maximize population health given limited resources. This "extra-welfarist" approach has produced pricing and reimbursement systems that are not well- aligned with the unique considerations of orphan drugs. This framework has been slow to evolve along with our increased understanding of the impact of rare diseases, which in turn has complicated the assessment of orphan drugs meant to treat rare diseases. Herein, we (i) discuss the limitations of conventional cost-effectiveness analysis as applied to assessing access to, as well as the pricing and reimbursement of, orphan drugs, (ii) critically appraise alternative and supplemental approaches, and (iii) offer insights on plausible steps forward.


Assuntos
Produção de Droga sem Interesse Comercial , Doenças Raras , Análise Custo-Benefício , Humanos , Anos de Vida Ajustados por Qualidade de Vida , Doenças Raras/tratamento farmacológico
16.
Ann Oper Res ; : 1-38, 2022 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-35283547

RESUMO

Mitigating the impacts of COVID-19 comes with the evaluation of tradeoffs. However, the exact magnitude of the tradeoffs being made cannot be known ahead of time. There are three major concerns to balance: life, liberty, and economy. Here, we create a multi-attribute utility function including those three attributes and provide reasonable bounds on the weights of each. No one set of weights on the utility function can be considered "correct." Furthermore, the outcomes of each mitigation strategy are deeply uncertain. Not only do we need to take into account the characteristics of the disease, but we also need to take into account the efficacy of the mitigation strategies and how each outcome would be evaluated. To handle this, we use Robust Decision Making methods to simulate plausible outcomes for various strategies and evaluate those outcomes using different weights on the multi-attribute utility function. The simulation is done with a compartmental epidemiological model combined with a simple economic model and a model of liberty costs. Rather than trying to optimize likely outcomes for a particular version of the utility function, we find which strategies are robust across a wide range of plausible scenarios even when there is disagreement about how to weigh the competing values of life, liberty, and economy.

17.
Med Decis Making ; 42(1): 51-59, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34041964

RESUMO

Medicare's Hospital Value-Based Purchasing Program (HVBP) is the first national pay-for-performance program to combine measures of quality of care with a measure of episode spending. We estimated the implicit tradeoffs between mortality reduction and spending reduction. To earn points in HVBP, a hospital can either lower mortality or reduce spending, creating a tradeoff between the 2 measures. We analyzed the quality performance and earned points of 2814 hospitals using publicly available data. We then quantified the tradeoffs between spending and mortality in terms of quality-adjusted life-years (QALYs). If incentives in the program were balanced, then the tradeoff between spending and QALYs should be comparable with those of high-value health interventions, roughly $50,000 to $200,000 per QALY. Instead, the tradeoff in HVBP was about $1.2 million per QALY. HVBP overvalues improvements in quality of care relative to spending reductions. We propose 2 possible policy adjustments that could improve incentives for hospitals to deliver high-value care.


Assuntos
Reembolso de Incentivo , Aquisição Baseada em Valor , Idoso , Hospitais , Humanos , Medicare , Anos de Vida Ajustados por Qualidade de Vida , Estados Unidos
18.
J Med Ethics ; 48(6): 419-426, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33687915

RESUMO

Many healthcare agencies are producing evidence-based guidance and policy that may determine the availability of particular healthcare products and procedures, effectively rationing aspects of healthcare. They claim legitimacy for their decisions through reference to evidence-based scientific method and the implementation of just decision-making procedures, often citing the criteria of 'accountability for reasonableness'; publicity, relevance, challenge and revision, and regulation. Central to most decision methods are estimates of gains in quality-adjusted life-years (QALY), a measure that combines the length and quality of survival. However, all agree that the QALY alone is not a sufficient measure of all relevant aspects of potential healthcare benefits, and a number of value assessment frameworks have been suggested. I argue that the practical implementation of these procedures has the potential to lead to a distorted assessment of value. Undue weight may be ascribed to certain attributes, particularly those that favour commercial or political interests, while other attributes that are highly valued by society, particularly those related to care processes, may be omitted or undervalued. This may be compounded by a lack of transparency to relevant stakeholders, resulting in an inability for them to participate in, or challenge, the decisions. The makes it likely that costly new technologies, for which inflated prices can be justified by the current value frameworks, are displacing aspects of healthcare that are highly valued by society.


Assuntos
Atenção à Saúde , Responsabilidade Social , Tomada de Decisões , Humanos , Anos de Vida Ajustados por Qualidade de Vida
19.
J Med Ethics ; 48(5): 353-356, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-33741678

RESUMO

Defining quality of life is a difficult task as it is a subjective and personal experience. However, for the elderly, this definition is necessary for making complicated healthcare-related decisions. Commonly these decisions compare independence against safety or longevity against comfort. These choices are often not made in isolation, but with the help of a healthcare team. When the patient's concept of quality of life is miscommunicated, there is a risk of harm to the patient whose best interests are not well understood. In order to bridge this gap in understanding and unite seniors with their caretakers as a cohesive team, we need to establish a definition of quality of life. In this paper, my personal experiences with the elderly will be analysed along with five essays on the topic of ageing. These sources provide clear evidence that quality of life for seniors is majorly determined by the ability to preserve one's lifelong identity. When making difficult decisions in geriatric healthcare, this greater understanding of the determinants of life quality will allow treatments to best serve the elderly. Defining quality of life allows healthcare providers to shift the focus from minimising disability toward maximising ability. I believe this shift would provide seniors with better health outcomes and properly enhance the quality of their years.


Assuntos
Pessoas com Deficiência , Qualidade de Vida , Idoso , Envelhecimento , Tomada de Decisões , Humanos
20.
Appl Econ Perspect Policy ; 44(1): 477-488, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34230850

RESUMO

We assess the economic and health costs of COVID and policy responses to COVID. Based on initial estimates of health and economic costs, social distancing policies were justified, but these estimates now seem too high because of learning by doing. Significant differences in mortality rates across US states and countries can be explained by population density, climate, exposure, and policy. Regions that were able to contain the disease early have seen fewer deaths and lower economic losses. Some developing countries initially imposed drastic, costly measures, perhaps motivated by political economy. We also find that there has been underinvestment in prevention and mitigation that could have reduced the cost of adaptation and suggest that there is a lesson for climate change policies.

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