The "Life" of the Mind: Persons and Survival.

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?

Estimating the value of life expectancy gains in Tanzania using the life satisfaction and model based approaches.

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.

Value assessment frameworks: who is valuing the care in healthcare?

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.

Autonomy, identity and health: defining quality of life in older age.

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.

Initiating technology dependence to sustain a child's life: a systematic review of reasons.

BACKGROUND: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the range of influences on these decisions. METHODS: Medline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence. RESULTS: 53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care. CONCLUSIONS: There is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside 'end-of-life' care. This review provides a sound basis for empirical research into the important influences on a child's potential technology dependence.

Moral values of Dutch physicians in relation to requests for euthanasia: a qualitative study.

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.

A Systematic Review of Demand-Side Methods of Estimating the Societal Monetary Value of Health Gain.

OBJECTIVES: Although many reviews of the literature on cost-effectiveness thresholds (CETs) exist, the availability of new studies and the absence of a fully comprehensive analysis warrant a new review. This study systematically reviews demand-side methods for estimating the societal monetary value of health gain. METHODS: Several electronic databases were searched from inception to October 2019. To be included, a study had to be an original article in any language, with a clearly described method for estimating the societal monetary values of health gain and with all estimated values reported. Estimates were converted to US dollars ($), using purchasing power parity (PPP) exchange rates and the gross domestic product (GDP) per capita (2019). RESULTS: We included 53 studies; 45 used direct approach and 8 used indirect approach. Median estimates from the direct approach were PPP$ 24 942 (range 554-1 301 912) per quality-adjusted life-year (QALY), which were typically 0.53 (range 0.02-24.08) GDP per capita. Median estimates using the indirect approach were PPP$ 310 051 (range 36 402-7 574 870) per QALY, which accounted for 7.87 (range 0.68-116.95) GDP per capita. CONCLUSIONS: Our review found that the societal values of health gain or CETs were less than GDP per capita. The great variety in methods and estimates suggests that a more standardized and internationally agreed methodology for estimating CET is warranted. Multiple CETs may have a role when QALYs are not equally valued from a societal perspective (eg, QALYs accruing to people near death compared with equivalent QALYs to others).

A note on psychological continuity theories of identity and neurointerventions.

An important concern sometimes voiced in the neuroethical literature is that swift and radical changes to the parts of a person's mental life essential for sustaining his/her numerical identity can result in the person ceasing to exist-in other words, that these changes may disrupt psychological continuity. Taking neurointerventions used for rehabilitative purposes as a point of departure, this short paper argues that the same radical alterations of criminal offenders' psychological features which under certain conditions would result in a disruption of numerical identity (and, thus, the killing of the offender) can be achieved without these having any effect on numerical identity. Thus, someone interested in making radical alterations to offenders' psychology can avoid the charge that this would kill the offenders, while still achieving a radical transformation of them. The paper suggests that this possibility makes the question of what kinds of qualitive alterations to offenders' identity are morally permissible (more?) pressing, but then briefly highlights some challenges for arguments against making radical qualitative identity alterations to offenders.

Incoming ethical issues for deep brain stimulation: when long-term treatment leads to a 'new form of the disease'.

Deep brain stimulation (DBS) has been regarded as an efficient and safe treatment for Parkinson's disease (PD) since being approved by the Food and Drug Administration (FDA) in 1997. It is estimated that more than 150 000 patients have been implanted, with a forecasted rapid increase in uptake with population ageing. Recent longitudinal follow-up studies have reported a significant increase in postoperative survival rates of patients with PD implanted with DBS as compared with those not implanted with DBS. Although DBS tends to increase life expectancy for most patients with PD, this medical benefit does not come without attendant negative consequences. For example, emerging forms of iatrogenic harms are sometimes induced-harms which were not initially expected when clinicians proposed neurosurgery and patients or their guardians consented to the treatment. We report and discuss the clinical case of a patient who was implanted with DBS more than 20 years ago (at the time of writing) and is now experiencing unexpected stages of PD. This case illustrates how extending the life span without improving quality of life may introduce a burden of harms for patients and families. As well, this case shows why we should prepare for the expanding numbers of PD-implanted patients experiencing a gain of longevity but with severe stages of disease leading to diminution in quality of life. This newly observed effect of DBS treatment requires us to explore ethical questions related to iatrogenic harms, informed consent, end of life and caregivers' burden.

Combatting Covid-19. Or, "All Persons Are Equal but Some Persons Are More Equal than Others?"

Vaccines, when available, will prove to be crucial in the fight against Covid-19. All societies will face acute dilemmas in allocating scarce lifesaving resources in the form of vaccines for Covid-19. The author proposes The Value of Lives Principle as a just and workable plan for equitable and efficient access. After describing what the principle entails, the author contrasts the advantage of this approach with other current proposals such as the Fair Priority Model.

Mortality containment vs. Economics Opening: Optimal policies in a SEIARD model.

We extend the classic approach (SIR) to a SEAIRD model with policy controls. A social planner's objective reflects the trade-off between mortality reduction and GDP, featuring its perception of the value of statistical life (PVSL). We introduce realistic and drastic limitations to the control available to it. Within this setup, we explore the results of various control policies. We notably describe the joint dynamics of infection and economy in different contexts with unique or multiple confinement episodes. Compared to other approaches, our contributions are: (i) to restrict the class of functions accessible to the social planner, and in particular to impose that they remain constant over some fixed periods; (ii) to impose implementation frictions, e.g. a lag in their implementation; (iii) to prove the existence of optimal strategies within this set of possible controls; iv) to exhibit a sudden change in optimal policy as the statistical value of life is raised, from laissez-faire to a sizeable lockdown level, indicating a possible reason for conflicting policy proposals.

Health Years in Total: A New Health Objective Function for Cost-Effectiveness Analysis.

OBJECTIVES: To find an alternative for quality-adjusted life-year (QALY) and equal value of life (EVL) measures. Despite the importance of QALY in cost-effectiveness analysis (CEA)-because it captures the effects of both life expectancy and health-related quality of life (QOL) and enables comparisons across interventions and disease areas-its potential to be discriminatory towards patients with lower QOL presents a critical challenge that has resulted in the exclusion of its use in some public decision making (eg, US Medicare) on healthcare in the United States. Alternatives to QALY, such as EVL, have not gained traction because EVL fails to recognize the QOL gains during added years of life. METHODS: We present a new metric for effectiveness for CEA, health years in total (HYT), which overcomes both the specific distributional issue raised by QALY and the efficiency challenges of EVL. RESULTS: The HYT framework separates life expectancy changes and QOL changes on an additive scale. HYT have the same axiomatic foundations as QALY and perform better than both QALY, in terms of the discriminatory implications, and EVL, in terms of capturing QOL gains during added years of life. HYT are straightforward to calculate within a CEA model. We found that thresholds of $34 000/HYT and $89 000/HYT correspond to CEA thresholds of $50 000/QALY and $150 000/QALY, respectively. CONCLUSIONS: The HYT framework may provide a viable alternative to both the QALY and the EVL; its application to diverse healthcare technologies and stakeholder assessments are important next steps in its development and evaluation.

The impact of the Ebola crisis on mortality and welfare in Liberia.

This study assesses the impact of Ebola virus disease (EVD) outbreak on individual and total welfare in Liberia during 2014/15. By combining mortality and household consumption data, it estimates how much individuals would be hypothetically willing to pay to avoid the EVD-induced increase in age- and sex-specific mortality rates. The results suggest that the total welfare loss associated with EVD-related mortality ranges from $90 to $190 million, which is comparable to estimates based on the economic costs of EVD alone. In addition, the estimates lie between those derived from the cost-of-illness and value of statistical life approaches applied in previous works. This suggests that incorporating additional information on age- and sex-specific mortality, as well as individual consumption levels, provides a more accurate estimation of the welfare loss due to EVD-related mortality.

Applying futility in psychiatry: a concept whose time has come.

Since its introduction in the 1980s, futility as a concept has held contested meaning and applications throughout medicine. There has been little discussion within the psychiatric literature about the use of futility in the care of individuals experiencing severe and persistent mental illness (SPMI), despite some tacit acceptance that futility may apply in certain cases of psychiatric illness. In this paper, we explore the literature surrounding futility and argue that its connotation within medicine is to describe situations where patients (or their substitute decision-makers) believe that interventions will almost certainly provide no meaningful benefit. We then provide two arguments in support of the use of futility within the care of individuals experiencing SPMI: that some SPMI can be considered a terminal illness, and that the risk-benefit ratio is a dynamic entity such that futility can help describe what Gillett calls the 'risk of unacceptable badness' when it comes to considering how an intervention might impact a patient's quality of life. We posit that capacity should not pose an obstacle to declaring futility when caring for individuals experiencing SPMI and explain how futility is not antithetical to recovery in mental health. Finally, we describe how using futility within psychiatric practice can allow for a reorientation of care by signalling the need to shift to a palliative approach.

Sleep softly: Schubert, ethics and the value of dying well.

Ethical discussions about medical treatment for seriously ill babies or children often focus on the 'value of life' or on 'quality of life' and what that might mean. In this paper, I look at the other side of the coin-on the value of death, and on the quality of dying. In particular, I examine whether there is such a thing as a good way to die, for an infant or an adult, and what that means for medical care. To do that, I call on philosophy and on personal experience. However, I will also make reference to art, poetry and music. That is partly because the topic of mortality has long been reflected on by artists as well as philosophers and ethicists. It is also because, as we will see, there may be some useful parallels to draw.

Worth living or worth dying? The views of the general public about allowing disabled children to die.

BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed. METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making. RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment. CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.

Deciding with dignity: The account of human dignity as an attitude and its implications for assisted suicide.

Discussions about assisted suicide have hitherto been based on accounts of dignity conceived only as an inherent value or as a status; accounts of dignity in which it appears as a (contingent) attitude, by contrast, have been neglected. Yet there are two good reasons to consider dignity to be an attitude. First, this concept of dignity best allows us to grasp a crucial aspect of everyday language: people often express fears of losing their dignity-and it is not possible to explain this with an account in which dignity is inherent. Second, such a concept allows us to adduce new argumentation where the argument based on status ends. Dignity considered as a status provides grounds to argue for the moral permissibility of assisted suicide, in the sense that in such an account individuals possess the normative power to waive their right to life. But the question then remains of how to decide what counts as a good reason for assisted suicide-and this is where an argument based on dignity as an attitude can provide illumination.

Towards a palliative care approach in psychiatry: do we need a new definition?

Psychiatry today is mainly practised within a curative framework. However, many mental disorders are persistent and negatively affect quality of life as well as life expectancy. This tension between treatment goals and the actual illness trajectory has evoked a growing academic interest in 'palliative psychiatry', namely the application of a palliative care approach in patients with severe persistent mental illness. Recently, Trachsel et al presented a working definition of palliative psychiatry. This first official attempt to capture the concept is based on WHO's widely accepted definition of palliative care but modified and limited to include only severe persistent psychiatric illness. While this is a welcome step in the discussion on palliative care approaches in psychiatry, it also opens up for new questions. One of the most evident is whether psychiatry actually needs its own definition of palliative care or, put differently, whether there is something about mental disorders that differs so radically from other medical conditions that it calls for a separate definition. We acknowledge the need to discuss the goals of psychiatric care in patients with severe persistent psychiatric illness. However, we question whether a separate definition of palliative care exclusive to psychiatry is the right way to go. In this paper, we discuss why.

The monetary value of human lives lost through Ebola virus disease in the Democratic Republic of Congo in 2019.

BACKGROUND: Between 8 May 2018 and 27 May 2019, cumulatively there were 1286 deaths from Ebola Virus Disease (EVD) in the Democratic Republic of Congo (DRC). The objective of this study was to estimate the monetary value of human lives lost through EVD in DRC. METHODS: Human capital approach was applied to monetarily value years of life lost due to premature deaths from EVD. The future losses were discounted to their present values at 3% discount rate. The model was reanalysed using 5 and 10% discount rates. The analysis was done alternately using the average life expectancies for DRC, the world, and the Japanese females to assess the effect on the monetary value of years of life lost (MVYLL). RESULTS: The 1286 deaths resulted in a total MVYLL of Int$17,761,539 assuming 3% discount rate and DRC life expectancy of 60.5 years. The average monetary value per EVD death was of Int$13,801. About 44.7 and 48.6% of the total MVYLL was borne by children aged below 9 years and adults aged between 15 years and 59 years, respectively. Re-estimation of the algorithm with average life expectancies of the world (both sexes) and Japanese females, holding discount rate constant at 3%, increased the MVYLL by Int$ 3,667,085 (20.6%) and Int$ 7,508,498 (42.3%), respectively. The application of discount rates of 5 and 10%, holding life expectancy constant at 60.5 years, reduced the MVYLL by Int$ 4,252,785 (- 23.9%) and Int$ 9,658,195 (- 54.4%) respectively. CONCLUSION: The EVD outbreak in DRC led to a considerable MVYLL. There is an urgent need for DRC government and development partners to disburse adequate resources to strengthen the national health system and other systems that address social determinants of health to end recurrence of EVD outbreaks.

Correlates of perceived death competence: What role does meaning-in-life and quality-of-life play?

OBJECTIVE: Understanding factors that are associated with more adaptive death attitudes and competencies can inspire future health-promoting palliative care strategies and inform approaches to training and development for health professionals. The potential importance of meaning, purpose, quality, and values in life for promoting adaptive death attitudes has been highlighted, but there is limited research in this area, particularly in relation to death competence. The purpose of this cross-sectional study was to develop an understanding of demographic and life-related factors associated with perceived death competence, such as meaning in life and quality of life. METHOD: During the course enrollment period of a Massive-Online-Open-Course about death and dying, 277 participants completed questionnaires on death competence, meaning in life, quality of life, and sociodemographic background. RESULT: Findings indicated that greater presence of meaning in life, quality of life, age, death experience, and carer experience were each statistically significant unique predictors of death competence scores. Life-related variables were more strongly associated with death competence than demographic variables. Bereavement experience and experience caring for the dying was associated with greater death competence, but there were no differences on death competence between health professionals and the general community. Above all other factors, the presence of meaning in life was the strongest predictor of higher perceived competence in coping with death. SIGNIFICANCE OF RESULTS: The findings demonstrate important interconnections between our attitudes about life and death. Knowledge of factors associated with poorer death competence may help identify those at risk of greater distress when facing death, and might prove useful additions to bereavement risk assessments. Understanding factors associated with greater death competence in health professionals and volunteers may help predict or prevent burnout and compassion fatigue, and help identify who would benefit from additional training and support. Future longitudinal studies including both health professionals and the general community are needed to determine the effect adaptive attitudes toward meaning in life can potentially have on bolstering subsequent adaptive coping and competence regarding death and dying.