Ethical concerns about research on incompetent persons.
Explore the source record for details and available documents.
Clinical Trials as Topic↗
Biomedical subjects
J Lynn
Publications and source records attributed to J Lynn.
Can we afford comprehensive, supportive care for the very old?
OBJECTIVE: To address the question, "Is there enough overuse of Medicare reimbursement to hospitals that reallocation of excess could provide sufficient funds to enhance home care and community services?" DESIGN: Simulation using data from the Medicare Current Beneficiary Survey (MCBS) to estimate dollars that might be reallocated from hospital reimbursement. PARTICIPANTS: A total of 3577 persons aged 80 and older in a stratified sample of Medicare beneficiaries interviewed in September 1992 in the MCBS. MEASUREMENTS: We ranked the United States hospital service areas' (HSAs) Medicare hospital discharge rates. We assigned the beneficiaries in the MCBS to the HSAs based on their residence zip codes. The hospitalization expenditures and mortality rates of MCBS respondents living in HSAs in each quartile were compared. RESULTS: By reducing hospital utilization to the mean level now used by the lowest quartile of HSAs, $560 would be saved per Medicare beneficiary aged 80 or older (P=.004) with no difference in mortality rates. These savings could purchase 40 visiting nurse visits per year for those in need. Potential savings would be $152 per Medicare beneficiary if hospital utilization were reduced from that used by the highest quartile to the level of the lower three quartiles of HSAs, enough to purchase about 11 additional visiting nurse visits. CONCLUSION: This simulation suggests that the very old might safely receive less hospital care. Because relatively few older people need home and community services in a year, these per capita savings could be reallocated to purchase many services for those having the greatest need.
Aged↗
Influence of patient preferences and local health system characteristics on the place of death. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Risks and Outcomes of Treatment.
OBJECTIVE: To examine the degree to which variation in place of death is explained by differences in the characteristics of patients, including preferences for dying at home, and by differences in the characteristics of local health systems. DESIGN: We drew on a clinically rich database to carry out a prospective study using data from the observational phase of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT component). We used administrative databases for the Medicare program to carry out a national cross-sectional analysis of Medicare enrollees place of death (Medicare component). SETTING: Five teaching hospitals (SUPPORT); All U.S. Hospital Referral Regions (Medicare). STUDY POPULATIONS: Patients dying after the enrollment hospitalization in the observational phase of SUPPORT for whom place of death and preferences were known. Medicare beneficiaries who died in 1992 or 1993. MAIN OUTCOME MEASURES: Place of death (hospital vs non-hospital). RESULTS: In SUPPORT, most patients expressed a preference for dying at home, yet most died in the hospital. The percent of SUPPORT patients dying in-hospital varied by greater than 2-fold across the five SUPPORT sites (29 to 66%). For Medicare beneficiaries, the percent dying in-hospital varied from 23 to 54% across U.S. Hospital Referral Regions (HRRs). In SUPPORT, variations in place of death across site were not explained by sociodemographic or clinical characteristics or patient preferences. Patient level (SUPPORT) and national cross-sectional (Medicare) multivariate models gave consistent results. The risk of in-hospital death was increased for residents of regions with greater hospital bed availability and use; the risk of in-hospital death was decreased in regions with greater nursing home and hospice availability and use. Measures of hospital bed availability and use were the most powerful predictors of place of death across HRRs. CONCLUSIONS: Whether people die in the hospital or not is powerfully influenced by characteristics of the local health system but not by patient preferences or other patient characteristics. These findings may explain the failure of the SUPPORT intervention to alter care patterns for seriously ill and dying patients. Reforming the care of dying patients may require modification of local resource availability and provider routines.
APACHE↗
Community physicians describe management issues for patients expected to live less than twelve months.
We examine management issues experienced by community physicians providing care to patients they expect to die within a year. In a case series, 61 physicians in northern New England enrolled 182 consecutive dying patients. Important management issues for these patients were recorded at enrollment and eight months later. The patients' average age was 74 years; most had cancer (48%) or cardiovascular disease (38%). Almost two-thirds of the patients died within eight months of enrollment. Major management issues for the physicians in care of these patients were deficits in basic self-care, emotional support, pain control, and nutrition. Pain control and family need for support were reported most frequently. Although demand for physician time was seldom a major management issue, when it occurred it correlated with patients' emotional needs or their desire to extend life (p < 0.01). Two barriers to optimum care commonly cited by physicians were (a) the differences in treatment expectations between family members, patients, and physicians and (b) the incurable, progressive nature of the patients' diseases. Efforts to improve care for patients who have limited life expectancy should further explore the perceptions of community physicians.
Aged↗
Outcomes and cost-effectiveness of initiating dialysis and continuing aggressive care in seriously ill hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
BACKGROUND: Renal failure requiring dialysis in the setting of hospitalization for serious illness is a poor prognostic sign, and dialysis and aggressive care are sometimes withheld. OBJECTIVE: To evaluate the clinical outcomes and cost-effectiveness of initiating dialysis and continuing aggressive care for seriously ill hospitalized patients. DESIGN: Prospective cohort study and cost-effectiveness analysis. SETTING: Five geographically diverse teaching hospitals. PATIENTS: 490 patients (median age, 61 years; 58% women) enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) in whom dialysis was initiated. MEASUREMENTS: Survival, functional status, quality of life, and health care costs. Life expectancy was estimated by extrapolating survival data (up to 4.4 years of follow-up) using a declining exponential function. Utilities (quality-of-life weights) were estimated by using time-tradeoff questions. Costs were based on data from SUPPORT and published Medicare data. RESULTS: Median duration of survival was 32 days, and only 27% of patients were alive after 5 months. Survivors reported a median of one dependency in activities of daily living, and 62% rated their quality of life as "good" or better. Overall, the estimated cost per quality-adjusted life-year saved by initiating dialysis and continuing aggressive care rather than withholding dialysis and allowing death to occur was $128,200. For the 103 patients in the worst prognostic category, the estimated cost per quality-adjusted life-year was $274,100; for the 94 patients in the best prognostic category, the cost per quality-adjusted life-year was $61,900. CONCLUSIONS: For the few patients who survived, clinical outcomes were fairly good. With the exception of patients with the best prognoses, however, the cost-effectiveness of initiating dialysis and continuing aggressive care far exceeded $50,000 per quality-adjusted life-year, a commonly cited threshold for cost-effective care.
Aged↗
Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment.
BACKGROUND: Physicians are frequently unaware of patient preferences for end-of-life care. Identifying and exploring barriers to patient-physician communication about end-of-life issues may help guide physicians and their patients toward more effective discussions. OBJECTIVE: To examine correlates and associated outcomes of patient communication and patient preferences for communication with physicians about cardiopulmonary resuscitation and prolonged mechanical ventilation. DESIGN: Prospective cohort study. SETTING: Five tertiary care hospitals. PATIENTS: 1832 (85%) of 2162 eligible patients completed interviews. MEASUREMENTS: Surveys of patient characteristics and preferences for end-of-life care; perceptions of prognosis, decision making, and quality of life; and patient preferences for communication with physicians about end-of-life decisions. RESULTS: Fewer than one fourth (23%) of seriously ill patients had discussed preferences for cardiopulmonary resuscitation with their physicians. Of patients who had not discussed their preferences for resuscitation, 58% were not interested in doing so. Of patients who had not discussed and did not want to discuss their preferences, 25% did not want resuscitation. In multivariable analyses, patient factors independently associated with not wanting to discuss preferences for cardiopulmonary resuscitation included being of an ethnicity other than black (adjusted odds ratio [OR], 1.48 [95% CI, 1.10 to 1.99), not having an advance directive (OR, 1.35 [CI, 1.04 to 1.76]), estimating an excellent prognosis (OR, 1.72 [CI, 1.32 to 2.59]), reporting fair to excellent quality of life (OR, 1.36 [CI, 1.05 to 1.76]), and not desiring active involvement in medical decisions (OR, 1.33 [CI, 1.07 to 1.65]). Factors independently associated with wanting to discuss preferences for resuscitation but not doing so included being black (OR, 1.53 [CI, 1.11 to 2.11]) and being younger (OR, 1.14 per 10-year interval younger [CI, 1.04 to 1.25]). CONCLUSIONS: Among seriously ill hospitalized adults, communication about preferences for cardiopulmonary resuscitation is uncommon. A majority of patients who have not discussed preferences for end-of-life care do not want to do so. For patients who do not want to discuss their preferences, as well as patients with an unmet need for such discussions, failure to discuss preferences for cardiopulmonary resuscitation and mechanical ventilation may result in unwanted interventions.
Adult↗
End-of-life care.
Explore the source record for details and available documents.
Advance Care Planning↗
How should doctors respond to their calling?
Explore the source record for details and available documents.
Family Practice↗
An 88-year-old woman facing the end of life.
Explore the source record for details and available documents.
Advance Care Planning↗
Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
BACKGROUND: Alleviating the problems faced by dying persons and their families has drawn substantial public attention, but little is known about the experience of dying. OBJECTIVE: To characterize the experience of dying from the perspective of surrogate decision makers, usually close family members (89%). DESIGN: Prospective cohort study. SETTING: Five teaching hospitals. PATIENTS: Persons who had one of nine serious medical conditions or were 80 years of age or older who died and for whom a surrogate decision maker completed an interview about the death. MEASUREMENTS: Medical records were reviewed and surrogate decision makers were interviewed. RESULTS: 4124 of 9105 seriously ill patients died (46%); 408 of 1176 elderly patients died (35%). The patients' family members were interviewed after 3357 persons (73%) had died. Of 1541 patients who survived the enrollment hospitalization, 46% died during a later hospitalization. In the last 3 days of life, 55% of patients were conscious. Among these patients, pain, dyspnea, and fatigue were prevalent. Four in 10 patients had severe pain most of the time. Severe fatigue affected almost 8 in 10 patients. More than 1 in 4 patients had moderate dysphoria. Sixty-three percent of patients had difficulty tolerating physical or emotional symptoms. Overall, 11% of patients had a final resuscitation attempt. A ventilator was used in one fourth of patients, and a feeding tube was used in four tenths of patients. Most patients (59%) were reported to prefer a treatment plan that focused on comfort, but care was reported to be contrary to the preferred approach in 10% of cases. CONCLUSIONS: Most elderly and seriously ill patients died in acute care hospitals. Pain and other symptoms were commonplace and troubling to patients. Family members believed that patients preferred comfort, but life-sustaining treatments were often used. These findings indicate important opportunities to improve the care of dying patients.
Aged↗
Functional status among survivors of in-hospital cardiopulmonary resuscitation. SUPPORT Investigators Study to Understand Progress and Preferences for Outcomes and Risks of Treatment.
OBJECTIVES: To describe functional outcomes of seriously III patients who survived 2 months after in-hospital cardiopulmonary resuscitation (CPR) and to identify patient and clinical characteristics associated with worse functional status after CPR. METHODS: Multicenter prospective observational analysis of 162 seriously ill hospitalized patients who survived 2 months after CPR. Analysis of clinical characteristics associated with worse functional outcome. RESULTS: Among 162 survivors of in-hospital CPR, 56% had the same or improved function and 44% had worse function at 2 months compared with functional status before CPR. Patients with worse function deteriorated by a mean of 3.9 activities of daily living and were less likely to survive to hospital discharge (P < .001) or to 6 months after study entry (P < .001). Worse functional outcome was associated with greater age and longer hospital stay before CPR. CONCLUSIONS: More than half of CPR survivors had preserved functional status 2 months after CPR. However, patients with worse function are profoundly disabled. In anticipation of possible severe disability after CPR, preferences for care in such health states should be discussed with patients before the need for CPR, particularly among older patients and those with long hospital stays.
Age Factors↗
Pain during hospitalization is associated with continued pain six months later in survivors of serious illness. The SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
PURPOSE: To determine the level of pain reported by survivors of serious illness 2 and 6 months after study enrollment and to identify variables associated with later pain. PATIENTS AND METHODS: Observational cohort study of patients with interviews during hospitalization (5,652) and 2 (3,782) and 6 (2,984) months later admitted between June 1989 and January 1994 with 1 or more of 9 high mortality diagnoses admitted to 5 tertiary care academic centers in the United States. Patients' level of pain during the hospitalization and 2 and 6 months later was determined from interviews with patients and surrogates (most often family members). Separate ordinal logistic regressions were constructed with level of pain at months 2 or 6 as the dependent variable and 22 demographic, psychological, chronic, and acute illness measures at the time of hospitalization as independent variables. RESULTS: Of patients reporting level 4 (moderately severe pain occurring most of the time or extremely severe pain occurring half of the time) or 5 (moderately severe pain occurring most or all of the time or extremely severe pain occurring at least half of the time) pain to 5 during hospital interviews, 39.5% and 39.7% reported level 4 or 5 pain 2 and 6 months later, respectively. Level of hospital pain was the variable most strongly associated with later pain. Compared with patients with level 1 hospital pain, those with level 2 (not at all severe pain or moderate, occasional) had a 2.91 (95% confidence interval [CI] 2.50, 3.37) and 1.75 (CI 1.48, 2.07) times greater adjusted odds of increased levels of pain 2 and 6 months later, respectively. Compared with patients with level 1 hospital pain, those with level 5 pain had a 9.20 (CI 7.27, 11.65) and 4.40 (CI 3.39, 5.71) times greater adjusted odds of increased levels of pain 2 and 6 months later, respectively. Age, number of dependencies in activities of daily living, depression, and type of comorbid illnesses were also independently associated with level of pain both 2 and 6 months later. CONCLUSION: Survivors of the serious and common illnesses that we studied have a high level of pain during hospitalization and up to 6 months after hospitalization. Level of hospital pain was most strongly associated with later pain. Better pain control both during hospitalization and after discharge should be given a high priority. Pain during hospitalization should trigger future inquiries about pain and its treatment.
Adult↗
Hospitalization of nursing home residents: the right rate?
Explore the source record for details and available documents.
Advance Directives↗
Surrogate and physician understanding of patients' preferences for living permanently in a nursing home.
OBJECTIVE: To evaluate patients' willingness to live permanently in a nursing home and surrogate and physician understanding of that preference. DESIGN: Evaluation of cross-sectional interview data from a cohort study. SETTING: Five academic medical centers. PARTICIPANTS: Seriously ill hospitalized adults enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). MEASUREMENTS: Patients' willingness to live permanently in a nursing home was measured on a 5-point scale ranging from "very willing" to "rather die." Ordinal logistic regression was used to identify patient demographic and clinical characteristics associated with this preference. Surrogate and physician perceptions of patient preferences were compared with patients' responses, and factors associated independently with surrogate and physician understanding of patient preference were identified. RESULTS: Of 9105 patients, 3262 (36%) provided responses to the study question: 7% were "very willing" to live permanently in a nursing home, 19% "somewhat willing," 11% "somewhat unwilling," 26% "very unwilling," and 30% would "rather die." Older age was associated independently with less willingness to live permanently in a nursing home (odds ratio [OR] = .90 per decade; 95% confidence interval [CI]: 0.85, 0.96). Patients with more education (OR = 1.03 per year; 95% CI: 1.00, 1.05) and more disabilities (OR = 1.05 per disability; 95% CI: 1.01, 1.09), and black patients (OR = 1.46 compared with white patients; 95% CI: 1.20, 1.76) were more willing to live in a nursing home. Surrogates understood 61% of patients' nursing home preferences but identified only 35% of patients who were willing to live permanently in a nursing home. Physicians identified 18% of patients willing to live permanently in a nursing home. CONCLUSION: Patient attitudes about living permanently in a nursing home can be elicited, cannot be reliably predicted from demographic and clinical variables, and are frequently misunderstood by surrogates and physicians. Elicitation of patient preferences regarding permanent nursing home placement should be explored before patients become unable to participate in decision making in order to enhance the concordance of patient preference with the way they spend the end of their lives.
Aged↗
American Geriatrics Society on physician-assisted suicide: brief to the United States Supreme Court.
Explore the source record for details and available documents.
Complicity↗
Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.
OBJECTIVE: To assess the effectiveness of written advance directives (ADs) in the care of seriously ill, hospitalized patients. In particular, to conduct an assessment after ADs were promoted by the Patient Self-Determination Act (PSDA) and enhanced by the effort to improve decision-making in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), focusing upon the impact of ADs on decision-making about resuscitation. DESIGN: Observational cohort study conducted for 2 years before (PRE) and for 2 years after (POST) the PSDA, with a randomized, controlled trial of an additional intervention to improve decision-making after PSDA (POST+SUPPORT). SETTING: Five teaching hospitals in the United States. PATIENTS: A total of 9105 seriously ill patients treated in five teaching hospitals. INTERVENTIONS: The PSDA mandated patient education about ADs at hospital entry and documentation of ADs in the medical record. The SUPPORT intervention, in addition, provided a nurse to facilitate communication among patients, surrogates, and physicians about preferences for and outcomes of treatment alternatives and, when clinically appropriate, to encourage completion and utilization of ADs. MEASUREMENTS: Interviews were conducted with patients, surrogates, and attending physicians about awareness, completion, and impact of ADs. Medical records were reviewed for discussion about preferences concerning resuscitation, timing and writing of "Do Not Resuscitate" (DNR) orders, evidence of ADs, and the use or forgoing of resuscitation at the time of death. RESULTS: In the three cohorts, PRE, POST, and POST+SUPPORT, average age was 63. One-quarter of patients died during the initial hospitalization, one-half were dead within 6 months, and one-half were unconscious for their last 3 days. Before the PSDA (PRE), 62% were familiar with a living will, and 21% had an AD. These rates were similar for the POST and POST+SUPPORT cohorts. Just 36 (6%) of these directives were mentioned in the medical records for PRE, but a stable 35% were documented for POST, and POST+SUPPORT had an increasing rate averaging 78% (P < .001). As previously reported for PRE patients, the POST patients with and without ADs had no significant differences in the rates of medical record documentation of discussions about resuscitation (33% vs 38%, POST without AD vs POST with AD), DNR orders among those who wanted to forgo resuscitation (54% vs 58%), and attempted resuscitations at death (17% vs 9%). The POST+SUPPORT patients had similar results, with no evidence that the intervention enhanced the effect of ADs on these three measures of resuscitation decision-making. Patients with ADs more often reported that preferences about resuscitation were discussed with a physician (e.g., for POST patients, 30% for those with no AD and 43% for those with an AD, P < .05). Only 12% of patients with ADs had talked with a physician when completing the AD. Only 42% reported ever having discussed the AD with their physician. By the second study week, only one in four physicians was aware of patients' ADs. CONCLUSIONS: In these seriously ill patients, ADs did not substantially enhance physician-patient communication or decision-making about resuscitation. This lack of effect was not altered by the PSDA or by the enhanced efforts in SUPPORT, although these interventions each substantially increased documentation of existing ADs. Current practice patterns indicate that increasing the frequency of ADs is unlikely to be a substantial element in improving the care of seriously ill patients. Future work to improve decision-making should focus upon improving the current pattern of practice through better communication and more comprehensive advance care planning.
Advance Care Planning↗
Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.
OBJECTIVE: To evaluate whether the lack of effect of advance directives (ADs) on decision-making in SUPPORT might arise, in part, from the content of the actual documents. DESIGN: Advance directives placed in the medical records were abstracted for date of completion and content of additional written instructions. We examined directives with instructions to forgo life-sustaining treatment in the current state of health to determine whether care given was consistent with preferences noted in those directives. SETTINGS: Five teaching hospitals in the United States. PATIENTS: A total of 4804 patients with at least one of nine serious illnesses were admitted to five teaching hospitals in the 2 years following implementation of the Patient Self-Determination Act. Patients were part of a randomized controlled trial to improve decision-making and outcomes. RESULTS: From the medical records of 4804 patients, a total of 688 directives were collected from 569 patients. The majority of these directives (66%) were durable powers of attorney; in addition, 31% were standard living wills or other forms of written instructions (3%). Only 90 documents (13%) provided additional instructions for medical care beyond naming a proxy or stating the preferences of a standard living will. Only 36 contained specific instructions about the use of life-sustaining medical treatment, and only 22 of these directed forgoing life-sustaining treatment in the patient's current situation. For these, the treatment course was consistent with the instruction for nine patients. In two cases, patients may have changed an inconsistent directive after discussion with hospital staff. CONCLUSION: Advance directives placed in the medical records of seriously ill patients often did not guide medical decision-making beyond naming a healthcare proxy or documenting general preferences in a standard living will format. Even when specific instructions were present, care was potentially inconsistent in half of the cases.
Advance Directives↗