The Vermont Study on Aid-in-Dying, 2016-2018 (ICPSR 37209)
Version Date: Apr 29, 2019 View help for published
Principal Investigator(s): View help for Principal Investigator(s)
Mara Buchbinder, University of North Carolina at Chapel Hill. Department of Social Medicine
https://doi.org/10.3886/ICPSR37209.v1
Version V1
Summary View help for Summary
Legislative support for physician aid-in-dying (PAD) in the US has risen steadily in recent years. In May 2013, Vermont became the fourth state to legalize PAD, through the "Patient Choice and Control at End of Life" Act (Act 39). The law authorized physicians to prescribe a lethal dose of medication to a mentally competent, terminally ill, adult patient for the purpose of ending the patient's life. With ongoing legislative activities in many other states, these laws are expected to spread nationally. This shifting legislative climate raises questions about how societies respond to changes in the sociocultural and biopolitical organization of death. While social scientists have examined the social and political forces that shape 'right to die' movements and counter-movements, sanctioning the right to die is only the first step in institutionalizing PAD as a new cultural and medical practice. What happens once these rights are legally authorized?
The purpose of this study was to learn about how people in Vermont have been affected by Act 39. This 2-year ethnographic study (July 2016-June 2018) addressed the following overarching research questions:
- How do ordinary people understand, access, experience, and contest the 'right to die' through PAD once it has been granted?
- How do healthcare providers and policy stakeholders accommodate or resist PAD as a new end-of-life practice?
- How does PAD affect the cultural landscape of care for the dying in the US?
Due to the recent enactment of Act 39, and Vermont's small size and the geographic proximity of key institutions, Vermont offered an ideal setting to explore these questions and document emergent responses to a new socio-legal phenomenon across multiple sites. By tracing the social life of Act 39 from the Vermont State House to the institutions, experts, and ordinary people responsible for managing death, this study yielded valuable information about the broad sociocultural consequences of legalizing PAD, including unintended consequences, that will be relevant to US policymakers, clinicians, patients, and families.
This collection includes semi-structured interviews with seriously ill Vermont patients, survivors of people who have used Act 39, healthcare providers and administrators, activists, and legislators, as well as participant observation in settings in which PAD is likely to be discussed. Participants were asked about their personal and professional backgrounds, attitudes on death and the legalization of PAD, understandings of the physician's role and responsibilities regarding end-of-life care, and interactions between healthcare providers, patients, and caregivers about PAD. The age, gender, and race of the participants are also provided.
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Restrictions View help for Restrictions
This data collection may not be used for any purpose other than statistical reporting and analysis. Use of these data to learn the identity of any person or establishment is prohibited. To protect respondent privacy, access to these data is restricted from general dissemination. To obtain these data, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.
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Study Purpose View help for Study Purpose
The purpose of this study is to learn about how people in Vermont have been affected by Vermont's physician aid-in-dying (PAD) law, The "Patient Choice and Control at End of Life" (Act 39), passed in 2013. Act 39 authorized physicians to prescribe a lethal dose of medication to a mentally competent, terminally ill, adult patient for the purpose of ending the patient's life.
Study Design View help for Study Design
The researcher identified four types of participants from across Vermont: practicing healthcare providers, patients with a serious or life-threatening medical diagnosis, family members or caregivers of a patient with a serious or life-threatening medical diagnosis, and policy stakeholders who were involved in advocacy surrounding Act 39. Participants completed either an in-person or over the phone interview, depending on their location and the ability of the researcher to travel to their location.
All participants were asked about their ideas on what makes a good death, their understanding of the physician's role and responsibilities regarding end-of-life care, and their attitudes toward physician aid-in-dying (PAD) and its legalization. Healthcare providers were asked about their professional background and interactions with patients and families about PAD. Patients were asked about their personal background, illness history, and current medical treatment, as well as their interactions with healthcare providers about PAD. Caregivers were asked about their experience as someone taking care of a patient with a serious or life-threatening illness and their interactions with healthcare providers about PAD. Stakeholders were also asked about their professional background and their advocacy work on Act 39.
The interviews were recorded and transcribed by the research team, and all participants were assigned a unique numerical study identifier and pseudonym. Personal and geographic identifiers and patient stories or anecdotes were also made anonymous by use of pseudonyms, change of details, or removal from the transcripts by the research team.
Sample View help for Sample
Participants were selected through snowball and convenience sampling.
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Universe View help for Universe
Vermont residents
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HideOriginal Release Date View help for Original Release Date
2019-04-29
Version History View help for Version History
2019-04-29 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:
- Created variable labels and/or value labels.
Notes
These data are freely available to data users at ICPSR member institutions. The curation and dissemination of this study are provided by the institutional members of ICPSR. How do I access ICPSR data if I am not at a member institution?
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