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Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) and Hospitalized Elderly Longitudinal Project (HELP), 1989-1997 (ICPSR 2957)

Released/updated on: 2020-02-20

Geographic coverage: United States

Time period: 1989-01-01--1997-12-31

The objective of the SUPPORT and HELP projects was to improve decision-making in order to address the growing national concern over the loss of control that patients have near the end of life and to reduce the frequency of a mechanical, painful, and prolonged process of dying. SUPPORT comprised a two-year prospective observational study (Phase I) followed by a two-year controlled clinical trial (Phase II). Phase I of SUPPORT collected data from patients accessioned during 1989-1991 to characterize the care, treatment preferences, and patterns of decision-making among critically ill patients. It also served as a preliminary step for devising an intervention strategy for improving critically-ill patients' care and for the construction of statistical models for predicting patient prognosis and functional status. An intervention was implemented in Phase II of SUPPORT, which accessioned patients during 1992-1994. The Phase II intervention provided physicians with accurate predictive information on future functional ability, survival probability to six months, and patients' preferences for end-of-life care. Additionally, a skilled nurse was provided as part of the intervention to elicit patient preferences, provide prognoses, enhance understanding, enable palliative care, and facilitate advance planning. The intervention was expected to increase communication, resulting in earlier decisions to have orders against resuscitation, decrease time that patients spent in undesirable states (e.g., in the Intensive Care Unit, on a ventilator, and in a coma), increase physician understanding of patients' preferences for care, decrease patient pain, and decrease hospital resource use. Data collection in both phases of SUPPORT consisted of questionnaires administered to patients, their surrogates, and physicians, plus chart reviews for abstracting clinical, treatment, and decision information. Phase II also collected information regarding the implementation of the intervention, such as patient-specific logs maintained by nurses assigned to patients as part of the intervention. SUPPORT patients were followed for six months after inclusion in the study. Those who did not die within six months or were lost to follow-up were matched against the National Death Index to identify deaths through 1997. The HELP study was conducted in 1993 concomitantly with Phase II of SUPPORT and collected data to characterize the care, treatment preferences, and patterns of decision-making among hospitalized patients who were at least 80 years old. HELP data were also intended for use in adapting existing mortality and functional status models of elderly hospitalized patients. Data collection methods of HELP were essentially the same as those of SUPPORT. HELP patients were followed for 12 months after inclusion in the study. Patients who did not die within one year or were lost to follow-up were matched against the National Death Index to identify deaths through 1997.

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The Vermont Study on Aid-in-Dying, 2016-2018 (ICPSR 37209)

Released/updated on: 2019-04-29

Geographic coverage: Vermont

Time period: 2016-07-01--2018-06-30

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.

Curated

Do Older Adults Know Their Spouses' End-of-Life Treatment Preferences? (ICPSR 25701)

Released/updated on: 2009-06-23

Geographic coverage: United States

When terminally ill patients become mentally incapacitated, their surrogates often make treatment decisions in collaboration with health care providers. The authors examined how surrogates' errors in reporting their spouses' preferences are affected by their gender, status as durable power of attorney for health care (DPAHC), whether they and their spouses discussed end-of-life preferences, and their spouses' health status. Structural equation models were applied to data from married couples in their mid-60s from the 2004 wave of the Wisconsin Longitudinal Study. Surrogates reported their spouses' preferences incorrectly 13 percent and 26 percent of the time in end-of-life scenarios involving cognitive impairment and physical pain, respectively. Surrogates projected their own preferences onto their spouses'. Similar patterns emerged regardless of surrogate gender and status as DPAHC, marital discussions about end-of-life preferences, or spousal health status. Implications for the process of surrogate decision-making and for future research are discussed.