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Is "end of life" a special case? Connecting Q with survey methods to measure societal support for views on the value of life-extending treatments.

ABSTRACT: Preference elicitation studies reporting societal views on the relative value of end-of-life treatments have produced equivocal results. This paper presents an alternative method, combining Q methodology and survey techniques (Q2S) to determine the distribution of 3 viewpoints on the relative value of end-of-life treatments identified in a previous, published, phase of this work. These were Viewpoint 1, "A population perspective: value for money, no special cases"; Viewpoint 2, "Life is precious: valuing life-extension and patient choice"; and Viewpoint 3, "Valuing wider benefits and opportunity cost: the quality of life and death." A Q2S survey of 4,902 respondents across the United Kingdom measured agreement with these viewpoints; 37% most agreed with Viewpoint 1, 49% with Viewpoint 2, and 9% with Viewpoint 3. Regression analysis showed associations of viewpoints with gender, level of education, religion, voting preferences, and satisfaction with the NHS. The Q2S approach provides a promising means to investigate how in-depth views and opinions are represented in the wider population. As demonstrated in this study, there is often more than 1 viewpoint on a topic and methods that seek to estimate that averages may not provide the best guidance for societal decision-making.

SUBMITTER: Mason H

PROVIDER: S-EPMC5900899 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Is "end of life" a special case? Connecting Q with survey methods to measure societal support for views on the value of life-extending treatments.

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

Health economics 20180119 5

Preference elicitation studies reporting societal views on the relative value of end-of-life treatments have produced equivocal results. This paper presents an alternative method, combining Q methodology and survey techniques (Q2S) to determine the distribution of 3 viewpoints on the relative value of end-of-life treatments identified in a previous, published, phase of this work. These were Viewpoint 1, "A population perspective: value for money, no special cases"; Viewpoint 2, "Life is precious ...[more]

PMID: 29349842

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Project description: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.

Project description:BackgroundIn many countries, medical interventions are reimbursed on the basis of recommendations made by advisory boards and committees that apply multiple criteria in their assessment procedures. Given the diversity of these criteria, it is difficult to find common ground to determine what information is required for setting priorities.ObjectiveTo investigate whether society and patients share the same interests and views concerning healthcare priorities.MethodsWe applied a framework of discrete choice models in which respondents were presented with judgmental tasks to elicit their preferences. They were asked to choose between two hypothetical scenarios of patients receiving a new treatment. The scenarios graphically presented treatment outcomes and patient characteristics. Responses were collected through an online survey administered among respondents from the general population (N = 1,253) and patients (N = 1,389) and were analyzed using conditional logit and mixed logit models.ResultsThe respondents' preferences regarding new medical treatments revealed that they attached the most relative importance to additional survival years, age at treatment, initial health condition, and the cause of disease. Minor differences in the relative importance assigned to three criteria: age at treatment, initial health, and cause of disease were found between the general population and patient samples. Health scenarios in which patients had higher initial health-related quality of life (i.e., a lower burden of disease) were favored over those in which patients' initial health-related quality of life was lower.ConclusionsOverall, respondents within the general population expressed preferences that were similar to those of the patients. Therefore, priority-setting studies that are based on the perspectives of the general population may be useful for informing decisions on reimbursement and other types of priority-setting processes in health care. Incorporating the preferences of the general population may simultaneously increase public acceptance of these decisions.

Project description:ObjectiveTo construct a new measure of end-of-life (EoL) spending-the elevated EoL spending-and examine its associations with measures of quality of care and patient and physician preferences in comparison with the commonly used total Medicare EoL spending measures.Data sources and study settingMedicare claims data for a 20% random sample of Medicare fee-for-service (FFS) patients, from the health care quality data for 2015-2016, from the Hospital Compare and the Medicare Geographic Variation public use file, and survey data about patient and physician preferences.Study designWe constructed the elevated EoL spending measure as the differential monthly spending between decedents and survivors with the same one-year mortality risk, where the risk was predicted using machine learning models. We then examined the associations of the hospital referral region (HRR)-level elevated EoL spending with various health care quality measures and with the survey-elicited patient and provider preferences. We also examined analogous associations for monthly total EoL spending on decedents.Data extraction methodsMedicare FFS patients who were continuously enrolled in Medicare Parts A & B in 2015 and were alive as of January 1, 2016.Principal findingsWe found a large variation in the elevated EoL spending across HRRs in the United States. There was no evidence of an association between HRR-level elevated EoL spending and established health care quality measures, including those specific to EoL care, whereas total EoL spending was positively associated with certain quality of care measures. We also found no evidence that elevated EoL spending was associated with patient preferences for EoL care. However, elevated EoL spending was positively and significantly associated with physician preferences for treatment intensity.ConclusionsOur findings suggested that elevated EoL spending captures different resource use from conventional measures of EoL spending and may be more valuable in identifying potentially wasteful spending.

Project description:BackgroundCharacteristics of the physician influence the essential decision-making in end-of-life care. However, the effect of special education in palliative medicine on different aspects of decision-making in end-of-life care remains unknown. The aim of this study was to explore the decision-making in end-of-life care among physicians with or without special competency in palliative medicine (cPM).MethodsA questionnaire including an advanced lung cancer patient-scenario with multiple decision options in end-of-life care situation was sent to 1327 Finnish physicians. Decisions to withdraw or withhold ten life-prolonging interventions were asked on a scale from 1 (definitely would not) to 5 (definitely would) - first, without additional information and then after the family's request for aggressive treatment and the availability of an advance directive. Values from chronological original scenario, family's appeal and advance directive were clustered by trajectory analysis.ResultsWe received 699 (53%) responses. The mean values of the ten answers in the original scenario were 4.1 in physicians with cPM, 3.4 in general practitioners, 3.4 in surgeons, 3.5 in internists and 3.8 in oncologists (p < 0.05 for physicians with cPM vs. oncologists and p < 0.001 for physicians with cPM vs. others). Younger age and not being an oncologist or not having cPM increased aggressive treatment decisions in multivariable logistic regression analysis. The less aggressive approach of physicians with cPM differed between therapies, being most striking concerning intravenous hydration, nasogastric tube and blood transfusions. The aggressive approach increased by the family's request (p < 0.001) and decreased by an advance directive (p < 0.001) in all physicians, regardless of special education in palliative medicine.ConclusionPhysicians with special education in palliative medicine make less aggressive decisions in end-of-life care. The impact of specialty on decision-making varies among treatment options. Education in end-of-life care decision-making should be mandatory for young physicians and those in specialty training.

Dataset Information

Is "end of life" a special case? Connecting Q with survey methods to measure societal support for views on the value of life-extending treatments.

Publications

Is "end of life" a special case? Connecting Q with survey methods to measure societal support for views on the value of life-extending treatments.

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