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      Stability of end-of-life preferences in relation to health status and life-events: A cohort study with a 6-year follow-up among holders of an advance directive

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          Abstract

          Background

          Stating preferences about care beforehand using advance care planning and advance directives has become increasingly common in current medicine. There is still lack of clarity what happens over the course of time in relation to these preferences. We wanted to determine whether the preferences about end-of-life care of a person owning an advance directive stay stable after the experience of a life-event; how often advance directives are altered and discussed with family members and physicians over time.

          Design

          A longitudinal cohort study with a population consisting of people owning the most common advance directives in the Netherlands, with a follow-up of 6-years from 2005 until 2011. Respondents were recruited using two associations that provided the advance directives, Right to Die-NL (n = 4463) and the Dutch Patient Organisation (n = 1263). Each 1.5 year a questionnaire was sent. We analyzed the relationship between variables using generalized estimated equations.

          Results

          96.9–98.1% of the respondents who had experienced a life-event had stable preferences. 89.9–93.7% of Right-to-Die-NL-members who had experienced a life-event didn’t make any alterations in their advance directives. During the 6-year course of our study, a minority of both groups didn’t discuss their advance directive with anyone (8.7–16.4%), while a majority didn’t discuss it with physicians (ranging 58.1–95.1%). Factors related to health, such as deterioration in experienced health, increased the odds to discuss advance directives.

          Conclusion

          Our results largely dispute criticism concerning usability of advance directives due to lack of stability of preferences. Whereas a change in health status and the experience of other life-events were not related to instability in preferences, they did increase the odds of communication about advance directives.

          Because our results show that the possession of an advance directive does not necessarily result in frequent discussions between patients and caregivers, a more structured approach like advance care planning might be a solution.

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          Most cited references25

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          [Measuring the quality of life in economic evaluations: the Dutch EQ-5D tariff].

          To value EQ-5D health states by a general Dutch public. EQ-5D is a standardised questionnaire that is used to calculate quality-adjusted life-years for cost-utility analysis. Descriptive. A sample of 309 Dutch adults from Rotterdam and surroundings was asked to value 17 EQ-5D health states using the time trade-off method. Regression analysis was applied to the valuations of these 17 health states. By means of the estimated regression coefficients, which together constitute the so-called Dutch tariff, valuations can be determined for all possible EQ-5D health states. These values reflect the relative desirability of health states on a scale where 1 refers to full health and 0 refers to death. Societal valuations are necessary in order to correct life-years for the quality of life. Complete data were obtained from 298 persons. Theywere representative for the Dutch population as far as age, gender and subjective health were concerned, but had a somewhat higher educational level. The estimated Dutch EQ-5D tariff revealed that the respondents assigned the most weight to (preventing) pain and anxiety or depression, followed by mobility, self-care and the activities of daily living. The Dutch tariff differed from the UK ('Measurement and Valuation of Health') tariff, which is currently used in Dutch cost-utility analyses. Compared to UK respondents, Dutch respondents assigned more weight to anxiety and depression and less weight to the other dimensions. Conclusion. The valuation of health states by this representative Dutch study group differed from the valuation that is currently used in Dutch cost-utility analyses.
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            Stability of end-of-life preferences: a systematic review of the evidence.

            Policies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable over time, even with changes in health status.
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              Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences.

              Policy and law encouraging individuals to document their wishes for life-sustaining medical treatment in advance of serious illness assumes that these wishes are unaffected by changes in health condition. To test this assumption, the authors examine the life-sustaining treatment preferences of a sample of elderly adults prior to, soon after, and several months after a hospitalization experience. As part of the Advance Directives, Values Assessment, and Communication Enhancement (ADVANCE) project, 401 individuals older than age 65 participated in 3 annual interviews. A subsample of 88 individuals who were hospitalized for greater than 48 hours during the course of the study participated in an additional "recovery" interview conducted soon after their release from the hospital (M = 14 days postdischarge). At each interview, subjects indicated their desire to receive 4 life-sustaining medical treatments in 4 serious illness scenarios. Treatment preferences showed a significant "hospitalization dip," with subjects reporting less desire to receive life-sustaining treatment at the recovery interview than they did at the annual interview conducted prior to hospitalization, but with desire returning to near prehospitalization levels at the annual interview conducted several months after hospitalization. This dip was more pronounced in preferences for cardiopulmonary resuscitation and artificial nutrition and hydration than in preferences for less invasive treatments. Preferences for life-sustaining treatment are dependent on the context in which they are made, and thus individuals may express different treatment preferences when they are healthy than when they are ill. These results challenge a key psychological assumption underlying the use of instructional advance directives in end-of-life decision making.
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                Author and article information

                Contributors
                Role: Data curationRole: Formal analysisRole: InvestigationRole: MethodologyRole: Writing – original draft
                Role: ConceptualizationRole: InvestigationRole: MethodologyRole: Writing – review & editing
                Role: Formal analysisRole: MethodologyRole: Writing – review & editing
                Role: ConceptualizationRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: SupervisionRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                18 December 2018
                2018
                : 13
                : 12
                : e0209315
                Affiliations
                [1 ] Department of Public and Occupational Health, Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands
                [2 ] Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands
                [3 ] Department of Medical Humanities, Amsterdam Public Health research institute, VU University Medical Center, Amsterdam, The Netherlands
                Boston University School of Medicine, UNITED STATES
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Author information
                http://orcid.org/0000-0003-1173-4985
                Article
                PONE-D-17-39377
                10.1371/journal.pone.0209315
                6298688
                30562403
                ba52c1f0-6efe-4186-ae15-340cd0d4e73b
                © 2018 van Wijmen et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 6 November 2017
                : 4 December 2018
                Page count
                Figures: 0, Tables: 5, Pages: 14
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/501100003246, Nederlandse Organisatie voor Wetenschappelijk Onderzoek;
                Award ID: NWO VICI 916.96.628
                Award Recipient :
                Funded by: Pieter van Foreest Stichting
                Award Recipient :
                Funded by: Right to Die-NL (NVVE)
                Award Recipient :
                Funded by: Nederlandse Patiënten Vereniging
                Award Recipient :
                This study was funded by the Innovational Research Incentives Scheme VICI 2008 from the Netherlands Organisation for Scientific Research (NWO) (grant number: NWO VICI 916.96.628), Pieter van Foreest Stichting, Right to Die-NL (NVVE) and the Nederlandse Patiënten Vereniging (NPV) (all received by BO). The NVVE and NPV helped with the collection of the data by providing the addresses of the respondents and preparing the sending of the questionnaires. The other funders had no role in the data collection. None of the funders had a role in study design, data analysis, decision to publish, or preparation of the manuscript.
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