Findings from SUPPORT and HELP: an introduction. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project.
Explore the source record for details and available documents.
Aged↗
Biomedical subjects
J Lynn
Publications and source records attributed to J Lynn.
Dying with end stage liver disease with cirrhosis: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.
OBJECTIVES: To understand patterns of care and end-of-life preferences for patients dying with end stage liver disease with cirrhosis (ESLDC). METHODS: Data were collected during the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a prospective cohort study of seriously ill hospitalized adults at five teaching hospitals in the United States, and included all patients enrolled in SUPPORT with ESLDC. RESULTS: Of 575 patients with ESLDC, 166 died during index hospitalization, and 168 died in the following year. The majority were male (65%) and white (80%); the median age was 52 years. Most rated their quality of life as poor or fair, and multiple comorbidities were common. Most spent their last few days completely disabled. Families often reported loss of most income and the need to leave work or other activities in order to care for patients. Pain was at least moderately severe most of the time in one-third of patients. End-of-life preferences were not associated with survival. Most patients (66.8%) preferred CPR, but DNR orders and orders against ventilator use increased near death. CONCLUSIONS: Patients with liver disease were young, likely to be male, and often had low incomes. The high burden of pain was comparable to that reported for patients with lung and colon cancer. Persons dying with liver disease may benefit from increased attention to relief of symptoms, improved home care, and advanced care planning.
Adult↗
Description of the SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
BACKGROUND: The purpose of Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) was to improve outcomes for seriously ill hospitalized adults by improving information and decision-making. The SUPPORT intervention has been characterized only briefly in previous publications. OBJECTIVE: To characterize the intervention in SUPPORT and its implementation. DESIGN: Reports derived from training and administrative materials, quantitative descriptions of implementation activities, and qualitative analysis of narrative reports and focus group participation by the intervention nurses. SETTING AND PATIENTS: SUPPORT enrolled 2652 patients in the intervention arm and 2152 in the control arm of a block-randomized trial of enhanced information, counseling, and support. The patients were hospitalized with one of nine serious illnesses in one of five US teaching hospitals between 1992 and 1994. MEASUREMENTS: (1) Reports on training and supervisory materials; (2) Rates of intervention component completion from contact logs and reports completed by the intervention nurses; and (3) grounded theory analysis of patient narratives, overview questionnaires, and focus group transcripts from the intervention nurses. RESULTS: Prognostic reports were delivered on time to the caregiving team in 83% of cases on Day 3. Reports of surrogate interviews of patient preferences and understanding were delivered on time to the caregiving team in 72% of first week cases. Patients' own reports of preferences were unavailable for 56% of cases in the first week. Overall, 39% of the rest of the patients had their interview information delivered on time to the caregiving team. The SUPPORT intervention nurses averaged 8.5 contacts with patients, 7.6 with surrogates, 3.5 with physicians, and 11.7 with other staff. The intervention nurses felt that they were fully involved in 81% of cases and had a limited role in another 14%. The major issues for patients were: understanding their situation, communication and decision-making, advance planning, do not resuscitate orders, and general support, including support for loss and grieving. The narrative sources showed that the nurses were enthusiastic, dedicated, and strong in their support of the study objectives. They identified various barriers to effectiveness and voiced doubt that the analytic targets would show an effect from the intervention. CONCLUSIONS: The SUPPORT intervention was implemented vigorously and completely.
Adult↗
Insights about dying from the SUPPORT project. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
OBJECTIVES: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) project was a study of 9105 seriously ill patients, 4274 of whom died within 6 months. HELP, the Hospitalized Elderly Longitudinal Project, was an ancillary study, in four of the five SUPPORT hospitals, of 1286 persons aged 80 years and older, 321 of whom died within 6 months. This paper reviews the SUPPORT and HELP literature to bring together insights concerning the time near death of seriously ill patients. METHODS: We reviewed published reports from SUPPORT and HELP, specifically, demographics of dying; characteristics of a prognostic model to estimate survival; patient symptoms near death; patient preferences and decision-making near death; ineffectiveness of the SUPPORT intervention; costs of dying while seriously ill; and the impact of serious illness on the family. We also compared and contrasted the experience of patients with different conditions. RESULTS: Patients in SUPPORT who died were typically younger than age 75. Most SUPPORT patients who died were male and most had an income of less than $11,000, although the older patients in HELP were even more likely to have had such low incomes. Patients with cirrhosis were much younger than most decedents, and patients with cancer were less often poor. Most had serious symptoms close to death. The place of death was more closely related to hospital bed supply than to decisions made by healthcare providers or individual patient preferences or characteristics. Prognosis near death was quite uncertain, especially in patients with heart and lung failure. CONCLUSIONS: Although SUPPORT aimed to describe and compare decision-making affecting seriously ill patients, it also illuminated many other aspects of their course near death.
Advance Directives↗
Terminal cancer syndrome.
Explore the source record for details and available documents.
Age Distribution↗
Older age, aggressiveness of care, and survival for seriously ill, hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
BACKGROUND: Older age is associated with less aggressive treatment and higher short-term mortality due to serious illness. It is not known whether less aggressive care contributes to this survival disadvantage in elderly persons. OBJECTIVE: To determine the effect of age on short-term survival, independent of baseline patient characteristics and aggressiveness of care. DESIGN: Secondary analysis of data from a prospective cohort study. SETTING: Five academic medical centers participating in SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments). PATIENTS: 9105 adults hospitalized with one of nine serious illnesses associated with an average 6-month mortality rate of 50%. MEASUREMENTS: Survival through 180 days of follow-up. In Cox proportional hazards modeling, adjustment was made for patient sex; ethnicity; income; baseline physical function; severity of illness; intensity of hospital resource use; presence of do-not-resuscitate orders on study day 1; and presence and timing of decisions to withhold transfer to the intensive care unit, major surgery, dialysis, blood transfusion, vasopressors, and tube feeding. RESULTS: The mean (+/- SD) patient age was 63 +/- 16 years, 44% of patients were female, and 16% were black. Overall survival to 6 months was 53%. In analyses that adjusted for sex, ethnicity, income, baseline functional status, severity of illness, and aggressiveness of care, each additional year of age increased the hazard of death by 1.0% (hazard ratio, 1.010 [95% CI, 1.007 to 1.013]) for patients 18 to 70 years of age and by 2.0% (hazard ratio, 1.020 [CI, 1.013 to 1.026]) for patients older than 70 years of age. Adjusted estimates of age-specific 6-month mortality rates were 44% for 55-year-old patients, 48% for 65-year-old patients, 53% for 75-year-old patients, and 60% for 85-year-old patients. Similar results were obtained in analyses that did not adjust for aggressiveness of care. Acute physiology and diagnosis had much larger relative contributions to prognosis than age. CONCLUSIONS: We found a modest independent association between patient age and short-term survival of serious illness. This age effect was not explained by the current practice of providing less aggressive care to elderly patients.
Activities of Daily Living↗
Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
CONTEXT: Many individuals involved with care of the dying advocate expanding access to hospice care for persons with advanced lung, heart, or liver disease. However, to be eligible, these patients generally must have a prognosis for survival of less than 6 months. OBJECTIVE: To test the ability of currently available criteria to identify a population with a survival prognosis of 6 months or less among seriously ill hospitalized patients with 1 of 3 commonly fatal chronic diseases. DESIGN: Validation study using data from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) phase 1 (June 1989-June 1991) and phase 2 (January 1992-January 1994), with a 6-month follow-up. SETTING AND PATIENTS: Consecutive sample of 2607 seriously ill patients from 5 US medical centers who were hospitalized with chronic obstructive pulmonary disease, congestive heart failure, or end-stage liver disease, and who survived to hospital discharge. MAIN OUTCOME MEASURES: Descriptive and operating characteristics of 5 general and 2 disease-specific clinical criteria for identifying patients with a survival prognosis of 6 months or less, and 3 sets of combination criteria (broad, intermediate, and narrow inclusion) aimed at providing low, medium, and high thresholds for hospice eligibility based on National Hospice Organization guidelines. RESULTS: Seventy-five percent of the sample survived more than 6 months after hospital discharge; 44% expressed a preference for palliative care. Broad inclusion criteria identified 923 patients eligible for hospice care, of whom 70% survived longer than 6 months. Intermediate inclusion criteria identified 300 patients, of whom 65% survived longer than 6 months. Narrow inclusion criteria identified 19 patients, of whom 53% survived longer than 6 months. Sensitivities and specificities of the combination criteria were 41.7% and 66.7% (broad inclusion), 16.2% and 90.1 % (intermediate inclusion), and 1.4% and 99.5% (narrow inclusion), respectively. CONCLUSIONS: These data indicate that for seriously ill hospitalized patients with advanced chronic obstructive pulmonary disease, congestive heart failure, or end-stage liver disease, recommended clinical prediction criteria are not effective in identifying a population with a survival prognosis of 6 months or less.
Adult↗
Oncologists' practice of euthanasia and physician-assisted suicide.
Explore the source record for details and available documents.
Humans↗
Patient age and decisions to withhold life-sustaining treatments from seriously ill, hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.
BACKGROUND: Patient age may influence decisions to withhold life-sustaining treatments, independent of patients' preferences for or ability to benefit from such treatments. Controversy exists about the appropriateness of using age as a criterion for making treatment decisions. OBJECTIVE: To determine the effect of age on decisions to withhold life-sustaining therapies. DESIGN: Prospective cohort study. SETTING: Five medical centers participating in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). PATIENTS: 9105 hospitalized adults who had one of nine illnesses associated with an average 6-month mortality rate of 50%. MEASUREMENTS: Outcomes were the presence and timing of decisions to withhold ventilator support, surgery, and dialysis. Adjustment was made for sociodemographic characteristics, prognoses, baseline function, patients' preferences for life-extending care, and physicians' understanding of patients' preferences for life-extending care. RESULTS: The median patient age was 63 years; 44% of patients were women, and 53% survived to 180 days. In adjusted analyses, older age was associated with higher rates of withholding each of the three life-sustaining treatments studied. For ventilator support, the rate of decisions to withhold therapy increased 15% with each decade of age (hazard ratio, 1.15 [95% CI, 1.12 to 1.19]); for surgery, the increase per decade was 19% (hazard ratio, 1.19 [CI, 1.12 to 1.27]); and for dialysis, the increase per decade was 12% (hazard ratio, 1.12 [CI, 1.06 to 1.19]). Physicians underestimated older patients' preferences for life-extending care; adjustment for this underestimation resulted in an attenuation of the association between age and decisions to withhold treatments. CONCLUSION: Even after adjustment for differences in patients' prognoses and preferences, older age was associated with higher rates of decisions to withhold ventilator support, surgery, and dialysis.
Activities of Daily Living↗
End-of-life care in medical textbooks.
Improvement in end-of-life care has become a demand of the public and a priority for health care professionals. Medical textbooks could support this improvement by functioning as educational resources and as reference material. In this paper, four widely used general medical textbooks are assessed for their coverage of nine content domains for 12 illnesses that often cause death; each domain in each disease and in each text was graded for presence and helpfulness of advice. Helpful information was rare, and only prognostication and medical treatments to alter the course of the disease were usually mentioned. Harrison's Textbook of Medicine, The Merck Manual, and Scientific American Medicine often mentioned at least a few of the domains in each disease, although not often in a way that would guide a clinician. Manual of Medical Therapeutics (The Washington Manual) includes little information about end-of-life care. Improvement seems possible. Short additions of information on end-of-life care would probably be effective. Many chapters discussed at length certain topics that are clearly optional; other textbooks addressed these topics only briefly. When dealing with end-of-life care, physicians should seek guidance from other sources and textbook authors and editors should improve the utility and completeness of their texts.
Advance Care Planning↗
Health status versus quality of life in older patients: does the distinction matter?
PURPOSE: Although health-related quality of life in older people is generally assessed by measuring specific domains of health status, such as activities of daily living or pain, the association between health-status measures and patients' perceptions of their quality of life is not clear. Indeed, it is controversial whether these health-status measures should be considered measures of quality of life at all. Our objective was to determine the association between health-status measures and older patients' perceptions of their global quality of life. SUBJECTS AND METHODS: We performed a cross-sectional study of 493 cognitively intact patients 80 years of age and older, interviewed 2 months after a hospitalization. We measured patients' self-assessed global quality of life and four domains of health status: physical capacity, limitations in performing activities of daily living, psychological distress, and pain. RESULTS: Each of the four scales was significantly correlated with patients' global perceptions of their quality of life (P <0.001). The ability of the health-status scales to discriminate between patients with differing global quality of life was generally good, especially for the physical capacity (c statistic = 0.72) and psychological distress scales (c statistic = 0.70). However, for a substantial minority of patients, scores on the health-status scales did not accurately reflect their global quality of life. For example, global quality of life was described as fair or poor by 15% of patients with the highest (best tertile) physical capacity scores, 25% of patients who were independent in all activities of daily living, 21% of patients with the least psychological distress (best tertile), and by 30% with no pain symptoms. Similarly, global quality of life was described as good or better by 43% of patients with the worst physical capacity (worst tertile), 49% of patients who were dependent in at least two activities of daily living, 47% of patients with the most psychological distress (worst tertile), and 51% of patients with severe pain. CONCLUSION: On average, health status is a reasonable indicator of global quality of life for groups of older patients with recent illness. However, disagreement between patients' reported health status and their perceptions of their global quality of life was common. Therefore, assumptions about the overall quality of life of individual patients should not be based on measures of their health status alone.
Activities of Daily Living↗
Forecasting patient services: a 21st century vision of an academic health centre.
This article provides an overview of the development and implementation of the McGill University Health Centre model for forecasting patient services in the year 2004, and advice on how to apply the model. Critical success factors and case examples are highlighted. The insights provided will be of value to hospitals and other institutions that recognize the necessity of engaging in long-range planning and forecasting.
Academic Medical Centers↗
The concept of quality of life of dying persons in the context of health care.
Considerable research has addressed quality of life and quality of care; however, it has not addressed adequately the experiences of patients and their families at the end of life. Health care may have a greater effect on quality of life during the dying process than it normally does. Building on research and expert review, a conceptual framework is presented that specifies and integrates quality of life and quality of health care indicators. Five main concepts include patient/family context, structure of care, process of care, satisfaction with care, and quality and length of life. Patient and family perspectives are considered. The framework emphasizes quality of life, thus detailed definitions of each quality of life domain are provided. The goal is to facilitate development of a comprehensive set of measures to describe the quality of life of dying persons and evaluate the care they receive, to be used to improve end-of-life care.
Attitude to Death↗
The symptom burden of seriously ill hospitalized patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcome and Risks of Treatment.
We studied symptom burden and associated factors in a cohort of 1582 seriously ill patients admitted at five tertiary care academic centers in the U.S. between June 1989 and June 1991 in the SUPPORT Study. Logistic regression was used to test the independent association of symptoms with demographic, psychological, chronic, and acute illness measures. Pain, dyspnea, anxiety, and depression caused the greatest symptom burden. The following symptoms accounted for 67.3% of all symptoms that were at least moderately severe at least half of the time: dyspnea (19.2%), pain (17.6%), pain/dyspnea (7.6%), anxiety (5.9%), depression (5.0%), anxiety/depression (4.4%), anxiety/depression/pain/dyspnea (3.9%), and nausea (3.7%). Hospital, male gender, disease category, more comorbidities, more dependencies in activities of daily living prior to illness, and poorer quality of life were associated with greater symptom burden. Seriously ill patients have a high symptom burden. Better strategies will be needed to control symptoms in these patients.
Academic Medical Centers↗
Incorporating palliative care into critical care education: principles, challenges, and opportunities.
OBJECTIVE: To identify the goals and methods for medical education about end-of-life care in the intensive care unit (ICU). DATA SOURCES AND STUDY SELECTION: A status report on palliative care, a summary report of recent research on palliative care education, articles in the medical literature on end-of-life care and critical care, and expert opinion were considered. DATA EXTRACTION: A working group, including specialists in critical care, palliative care, medical ethics, consumer advocacy, and communications, was convened at the "Medical Education for Care Near the End of Life National Consensus Conference." A modified nominal group process was used to develop a consensus. DATA SYNTHESIS: In the ICU, life and death decisions are often made in a crisis mode or in the face of uncertainty, and may necessitate the withholding and withdrawal of life-supporting technologies. Because critical illness often diminishes the capacity of patients to make decisions, clinicians must often make decisions in conjunction with surrogates, rather than with patients. Discontinuity of care can threaten trusting relationships, and cultural diversity can have a particularly powerful impact on choices for care. In the face of these realities, it is possible and appropriate to give compassionate palliative care to dying patients and their families in the ICU. CONCLUSIONS: Teaching care of the dying in the ICU should emphasize the following: a) the goals of care should guide the use of technology; b) understanding of prognostication and treatment withholding and withdrawal is essential; c) effective communication and trusting relationships are crucial to good care; d) cultural differences should be acknowledged and respected; and e) the delivery of excellent palliative care is appropriate and necessary when patients die in the ICU.
Attitude to Death↗
MediCaring: development and test marketing of a supportive care benefit for older people.
OBJECTIVES: To develop an alternative healthcare benefit (called MediCaring) and to assess the preferences of older Medicare beneficiaries concerning this benefit, which emphasizes more home-based and supportive health care and discourages use of hospitalization and aggressive treatment. To evaluate the beneficiaries' ability to understand and make a choice regarding health insurance benefits; to measure their likelihood to change from traditional Medicare to the new MediCaring benefit; and to determine the short-term stability of that choice. DESIGN: Focus groups of persons aged 65+ and family members shaped the potential MediCaring benefit. A panel of 50 national experts critiqued three iterations of the benefit. The final version was test marketed by discussing it with 382 older people (men > or = 75 years and women > or = 80 years) in their homes. Telephone surveys a few days later, and again 1 month after the home interview, assessed the potential beneficiaries' understanding and preferences concerning MediCaring and the stability of their responses. SETTINGS: Focus groups were held in community settings in New Hampshire, Washington, DC, Cleveland, OH, and Columbia, SC. Test marketing occurred in New Hampshire, Cleveland, OH; Columbia, SC, and Los Angeles, CA. PARTICIPANTS: Focus group participants were persons more than 65 years old (11 focus groups), healthcare providers (9 focus groups), and family decision-makers (3 focus groups). Participants in the in-home informing (test marketing group) were persons older than 75 years who were identified through contact with a variety of services. MEASUREMENTS: Demographics, health characteristics, understanding, and preferences. RESULTS: Focus group beneficiaries between the ages of 65 and 74 generally wanted access to all possible medical treatment and saw MediCaring as a need of persons older than themselves. Those older than age 80 were mostly in favor of it. Test marketing participants understood the key points of the new benefit: 74% generally liked it, and 34% said they would take it now. Preferences were generally stable at 1 month. In multivariate regression, those preferring MediCaring were wealthier, more often white, more often living in senior housing, and using more homecare services. However, they were not more often in poor health or needing ADL assistance. CONCLUSIONS: Older persons aged more than 80 years can understand a health benefit choice; most liked the aims of a new supportive care benefit, and 34% would change immediately from Medicare to a supportive care benefit such as MediCaring,. These findings encourage further development of special programs of care, such as MediCaring, that prioritize comfort and support for the old old.
Advance Care Planning↗
Reforming the Care System to Support Those Coming to the End of Life.
BACKGROUND: Health care has shifted its focus regarding dying patients toward improving care rather than striving for cure. METHODS: The Center to Improve Care of the Dying and the Institute for Healthcare Improvement sponsored a quality improvement collaborative from July 1997 through July 1998 to learn how to accomplish this. RESULTS: (1) Classifying persons as "dying" or "not dying" does not help to ensure quality care at the end of life. The impossibility of predicting time of death in many illnesses demands not only a shift to asking whether a patient is sick enough to die of the current illness, but also targeting special services to those patients. (2) Quality improvement strategies in this arena regularly yield important gains in such fields as pain control, bereavement support, and advance planning. (3) Serious reform probably must originate in system design and routine practice rather than in exhortations to customize decision making. The Study to Understand Prognoses and Preferences in Outcomes and Risks of Treatment (SUPPORT) found that 80% of the substantial variation in the rate of death at home correlated with hospital bed supply. CONCLUSIONS: Based on the inadequacy of the current classification system and on the unpredictability of the timing of death, a conceptual model is proposed for many patients that mixes conventional "aggressive" care with palliative care and is triggered by illness severity rather than by prognosis. High leverage reform in end-of-life care is available now through quality improvement strategies.
Journal Article↗