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Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints.

ABSTRACT: Criteria used by the National Institute for Health and Care Excellence (NICE) to assess life-extending, end-of-life (EoL) treatments imply that health gains from such treatments are valued more than other health gains. Despite claims that the policy is supported by societal values, evidence from preference elicitation studies is mixed and in-depth research has shown there are different societal viewpoints. Few studies elicit preferences for policies directly or combine different approaches to understand preferences. Survey questions were designed to investigate support for NICE EoL guidance at national and regional levels. These 'Decision Rule' and 'Treatment Choice' questions were administered to an online sample of 1496 UK respondents in May 2014. The same respondents answered questions designed to elicit their agreement with three viewpoints (previously identified and described) in relation to provision of EoL treatments for terminally ill patients. We report the findings of these choice questions and examine how they relate to each other and respondents' viewpoints. The Decision Rule questions described three policies: DA - a standard 'value for money' test, applied to all health technologies; DB - giving special consideration to all treatments for terminal illnesses; and DC - giving special consideration to specific categories of treatments for terminal illnesses e.g. life extension (as in NICE EoL guidance) or those that improve quality-of-life (QoL). Three Treatment Choices were presented: TA - improving QoL for patients with a non-terminal illness; TB - extending life for EoL patients; and TC - improving QoL at the EoL. DC received most support (45%) with most respondents giving special consideration to EoL only when treatments improved QoL. The most commonly preferred treatment choices were TA (51%) and TC (43%). Overall, this study challenges claims about public support for NICE's EoL guidance and the focus on life extension at EoL and substantiates existing evidence of plurality in societal values.

SUBMITTER: McHugh N

PROVIDER: S-EPMC5884317 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints.

McHugh Neil N van Exel Job J Mason Helen H Godwin Jon J Collins Marissa M Donaldson Cam C Baker Rachel R

Social science & medicine (1982) 20171216

Criteria used by the National Institute for Health and Care Excellence (NICE) to assess life-extending, end-of-life (EoL) treatments imply that health gains from such treatments are valued more than other health gains. Despite claims that the policy is supported by societal values, evidence from preference elicitation studies is mixed and in-depth research has shown there are different societal viewpoints. Few studies elicit preferences for policies directly or combine different approaches to un ...[more]

PMID: 29276987

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Project description:BACKGROUNDOn February 6th, 2015, the Supreme Court of Canada ruled that competent adults suffering intolerably from a grievous and irremediable medical condition have the right to the assistance of a physician in ending their own lives, an act known as physician-assisted death, and later defined as medical assistance in dying, allowing for provision by a physician or a nurse practitioner. As of June 6th, 2016, this is no longer illegal across Canada. There is strong support amongst the general population for physician-assisted death, however there is no recent data on the attitudes of terminally ill patients. Our main objective was to gain information on terminally ill patients' general and personal attitudes toward physician-assisted death.METHODSThis is an exploratory pilot study. We surveyed three groups of patients with life-limiting diagnoses: one with new referrals to palliative care; one with no palliative care involvement; and one with prior and ongoing management by a palliative care team. Respondents were surveyed twice, approximately two weeks apart, and rated their general attitudes toward physician-assisted death and the hypothetical consideration of physician-assisted death for oneself on a five-point Likert scale at baseline and follow-up. Respondents with new referrals to palliative care were surveyed before and after palliative care consultation. This study was approved by The Western University Health Sciences Research Ethics Board and Lawson Health Research Institute.RESULTSWe surveyed 102 participants, 70 of whom completed both surveys (31% dropout rate). Participants in all groups predominantly responded between somewhat agree (4 on a 5-point Likert scale) and strongly agree (5 on the Likert scale) when asked about their general attitude toward physician-assisted death. Patients with prior palliative care involvement reported the highest average ratings of hypothetical consideration of physician-assisted death for oneself on a 5-point Likert scale (3.4 at baseline; 3.9 at follow-up), followed by patients with a new palliative consultation (3.2 at baseline; 3.3 at follow-up), and patients with no palliative involvement (2.6 at baseline; 2.9 at follow-up).CONCLUSIONSGiven the preliminary results of this pilot study, we can conclude that terminally ill patients generally agree that physician-assisted death should be available to patients with life-limiting illnesses. Furthermore, descriptive data show a trend for higher hypothetical consideration of physician-assisted death in those patients with prior and ongoing palliative care involvement than patients without palliative involvement. Responses in all groups remained fairly consistent over the two-week period.

Project description:BackgroundPrevious analyses have suggested that unregulated private drinking water wells carry a higher risk of exposure to microbial contamination than regulated community water systems. In North Carolina, ~35% of the state's population relies on private wells, but the health impact associated with widespread reliance on such unregulated drinking water sources is unknown.ObjectivesWe estimated the total number of emergency department visits for acute gastrointestinal illness (AGI) attributable to microbial contamination in private wells in North Carolina per year, the costs of those visits, and the potential health benefits of extending regulated water service to households currently relying on private wells for their drinking water.MethodsWe developed a population intervention model using 2007-2013 data from all 122 North Carolina emergency departments along with microbial contamination data for all 2,120 community water systems and for 16,138 private well water samples collected since 2008.ResultsAn estimated 29,400 (95% CI: 26,600, 32,200) emergency department visits per year for acute gastrointestinal illness were attributable to microbial contamination in drinking water, constituting approximately 7.3% (95% CI: 6.6, 7.9%) of all AGI-related visits. Of these attributable cases, 99% (29,200; 95% CI: 26,500, 31,900) were associated with private well contamination. The estimated statewide annual cost of emergency department visits attributable to microbiological contamination of drinking water is 40.2 million USD (95% CI: 2.58 million USD, 193 million USD), of which 39.9 million USD (95% CI: 2.56 million USD, 192 million USD) is estimated to arise from private well contamination. An estimated 2,920 (95% CI: 2,650, 3,190) annual emergency department visits could be prevented by extending community water service to 10% of the population currently relying on private wells.ConclusionsThis research provides new evidence that extending regulated community water service to populations currently relying on private wells may decrease the population burden of acute gastrointestinal illness.CitationDeFelice NB, Johnston JE, Gibson JM. 2016. Reducing emergency department visits for acute gastrointestinal illnesses in North Carolina (USA) by extending community water service. Environ Health Perspect 124:1583-1591;?http://dx.doi.org/10.1289/EHP160.

Project description:Major mental illnesses such as schizophrenia (SZ) and bipolar disorder (BP) frequently accompany metabolic conditions, but their relationship is still unclear, in particular at the mechanistic level. We implemented an approach of "from population to neuron", combining population-based epidemiological analysis with neurobiological experiments using cell and animal models based on a hypothesis built from the epidemiological study. We characterized high-quality population data, olfactory neuronal cells biopsied from patients with SZ or BP, and healthy subjects, as well as mice genetically modified for insulin signaling. We accessed the Danish Registry and observed (1) a higher incidence of diabetes in people with SZ or BP and (2) higher incidence of major mental illnesses in people with diabetes in the same large cohort. These epidemiological data suggest the existence of common pathophysiological mediators in both diabetes and major mental illnesses. We hypothesized that molecules associated with insulin resistance might be such common mediators, and then validated the hypothesis by using two independent sets of olfactory neuronal cells biopsied from patients and healthy controls. In the first set, we confirmed an enrichment of insulin signaling-associated molecules among the genes that were significantly different between SZ patients and controls in unbiased expression profiling data. In the second set, olfactory neuronal cells from SZ and BP patients who were not pre-diabetic or diabetic showed reduced IRS2 tyrosine phosphorylation upon insulin stimulation, indicative of insulin resistance. These cells also displayed an upregulation of IRS1 protein phosphorylation at serine-312 at baseline (without insulin stimulation), further supporting the concept of insulin resistance in olfactory neuronal cells from SZ patients. Finally, Irs2 knockout mice showed an aberrant response to amphetamine, which is also observed in some patients with major mental illnesses. The bi-directional relationships between major mental illnesses and diabetes suggest that there may be common pathophysiological mediators associated with insulin resistance underlying these mental and physical conditions.

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Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints.

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Are life-extending treatments for terminal illnesses a special case? Exploring choices and societal viewpoints.

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