Showing 1 – 3 of 3 results.
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.
Curated
National Hospice Study: Patient and Facility Data, [1980-1983] (ICPSR 8466)
Released/updated on: 2006-01-12
Geographic coverage: United States
Time period: 1980-01-01--1983-01-01
The purpose of the National Hospice Study was to examine the impact of hospice care on the quality of life of patients and their families and the health care cost incurred by patients. The National Hospice Study consists of two distinct, but interrelated, primary data collection components. The first relates to patient level studies of the costs incurred by patients and their families during the final phases of terminal cancer as well as the quality of life that they experienced during this period. The second component of the study relates to comparisons of the hospices that had received special demonstration funding from the Health Care Financing Adminstration for reimbursement of costs incurred by Medicare patients and those that had not. To address the issue of the desirability of reimbursing for hospice under Medicare, data from a large number of hospice and nonhospice patients were gathered. Patients were identified via the sites of care serving them, both hospice and nonhospice. Three types of data were collected: (1) facility level characteristics for a sample of all hospices nationwide, (2) census of intake and discharge characteristics for all patients served by those hospices during the study period, and (3) an extensive interview schedule regarding the quality of care and adequacy of Medicare reimbursement programs was conducted in both hospice and nonhospice settings with a sample of those patients fulfilling certain selection criteria (as well as their primary care person and family).
Curated
Restricted
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--1997-01-01
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.