Handling conflict in end-of-life care.
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Decision Making↗
Biomedical subjects
J Lynn
Publications and source records attributed to J Lynn.
Legislation and end-of-life care.
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Government Regulation↗
Prognostic criteria for hospice eligibility
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Journal Article↗
Surgical management of primary melanoma.
A significant proportion of the general population is diagnosed with malignant melanoma each year, and more people die of melanoma now than at any time in the past. Consequently, treatment of melanoma at all stages of development is an important clinical issue. A variety of management options are discussed here, including biopsy techniques and treatment of the primary melanoma. The latter include lymphatic mapping and sentinel lymph node biopsy, hyperthermic isolated limb perfusion, and surgery for stage IV melanoma patients. Procedure-associated benefits and possible complications associated with each modality are also summarized.
Biopsy↗
Patient race and decisions to withhold or withdraw life-sustaining treatments for seriously ill hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
PURPOSE: Patient race is associated with decreased resource use for seriously ill hospitalized adults. We studied whether this difference in resource use can be attributed to more frequent or earlier decisions to withhold or withdraw life-sustaining therapies. SUBJECTS AND METHODS: We studied adults with one of nine illnesses that are associated with an average 6-month mortality of 50% who were hospitalized at five geographically diverse teaching hospitals participating in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). We examined the presence and timing of decisions to withhold or withdraw ventilator support and dialysis, and decisions to withhold surgery. Analyses were adjusted for demographic characteristics, prognosis, severity of illness, function, and patients' preferences for life-extending care. RESULTS: The mean (+/- SD) age of the patients was 63 +/- 16 years; 16% were African-American, 44% were women, and 53% survived for 6 months or longer. Of the 9,076 patients, 5,349 (59%) had chart documentation that ventilator support had been considered in the event the patient's condition required such a treatment to sustain life, 2,975 charts (33%) had documentation regarding major surgery, and 1,293 (14%) had documentation of discussions about dialysis. There were no significant differences in the unadjusted rates of decisions to withhold or withdraw treatment among African-Americans compared with non-African-Americans: among African-Americans, 33% had a decision made to withhold or withdraw ventilator support compared with 35% among other patients, 14% had a decision made to withhold major surgery compared with 12% among other patients, and 25% had a decision made to withhold or withdraw dialysis compared with 30% among other patients (P >0.05 for all comparisons). After adjustment for demographic characteristics, prognosis, illness severity, function, and preferences for care, there were no differences in the timing or rate of decisions to withhold or withdraw treatments among African-Americans compared with non-African-American patients. CONCLUSION: Patient race does not appear to be associated with decisions to withhold or withdraw ventilator support or dialysis, or to withhold major surgery, in seriously ill hospitalized adults.
Adult↗
Autologous conjunctival resurfacing of leaking filtering blebs.
PURPOSE: To present a case series of a new technique to repair late bleb leaks. DESIGN: Retrospective, noncomparative, consecutive case series. PARTICIPANTS: Forty-seven autologous conjunctival resurfacings of late bleb leaks were performed by four surgeons at two institutions. METHODS: Autologous conjunctival grafts were placed over existing de-epithelialized leaking blebs. MAIN OUTCOME MEASURES: Leak-free, Seidel-negative blebs and controlled glaucoma. RESULTS: After a mean follow-up of 14 +/- 12 months, one patient continued to have bleb leak at the last follow-up, and one frank leak resolved with aqueous suppression. Intraocular pressure increased from 6.6 +/- 4.4 mmHg (0.13 glaucoma medications) to 11.9 +/- 4.1 mmHg (0.41 glaucoma medications). CONCLUSIONS: Conjunctival resurfacing with autologous tissue is an effective technique to repair late bleb leaks.
Adolescent↗
Patient characteristics associated with care by a cardiologist among adults hospitalized with severe congestive heart failure. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
OBJECTIVES: The goal of this study was to determine factors associated with receiving cardiologist care among patients with an acute exacerbation of congestive heart failure. BACKGROUND: Because cardiologist care for acute cardiovascular illness may improve care, barriers to specialty care could impact patient outcomes. METHODS: We studied 1,298 patients hospitalized with acute exacerbation of congestive heart failure who were cared for by cardiologists or generalist physicians. Using multivariable logistic models we determined factors independently associated with attending cardiologist care. RESULTS: Patients were less likely to receive care from a cardiologist if they were black (adjusted odds ratio [AOR] 0.53, 95% confidence interval [CI] 0.35, 0.80), had an income of less than $11,000 (AOR 0.65, 95% CI 0.45, 0.93) or were older than 80 years of age (AOR 0.23, 95% CI 0.12, 0.46). Patients were more likely to receive cardiologist care if they had college level education (AOR 1.89, 95% CI 1.02, 3.51), a history of myocardial infarction (AOR 1.59, 95% CI 1.17, 2.16), a serum sodium less than 133 on admission (AOR 1.96, 95% CI 1.30, 2.95) or a systolic blood pressure less than 90 on admission (AOR 1.97, 95% CI 1.20, 3.24). Patients who stated a desire for life extending care were also more likely to receive care from a cardiologist (AOR 1.40, 95% CI 1.04, 1.90). CONCLUSIONS: After adjusting for severity of illness and patient preferences for care, patient sociodemographic factors were strongly associated with receiving care from a cardiologist. Future investigations are required to determine whether these associations represent unmeasured preferences for care or inequities in our health care system.
Adult↗
Finding the key to reform in end-of-life care.
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Health Care Reform↗
Potential medicare reimbursements for services to patients with chronic fatal illnesses.
Medicare's payment and coverage patterns most readily serve beneficiaries' needs for episodic interventions such as surgery and diagnostic tests. Except in hospice, supportive services for long-term, worsening illnesses have not been central to financial policies. Thus, providers who aim for comprehensive, high-quality programs for patients facing serious and eventually fatal illness must work within complex reimbursement structures that do not fit patients' needs well. In acute settings, long-term care settings, home health, physicians' visits and hospice, the rules for Medicare reimbursements differ and are rapidly changing. Consequently, many providers do not know how to bill for appropriate care for a person who is very sick and expected to die. Many health-care provider organizations want to enhance services to seriously ill patients and their families by initiating organized palliative care programs. Often, organization leaders are unfamiliar with regulatory and reimbursement issues for palliative care, especially as patients cross programs. This article provides an overview of the reimbursement approaches for Medicare payments. This information gives a foundation for estimating a business plan, for discussions with fiscal intermediaries and with other area provider organizations, and for making financially viable strategic improvements in care for seriously ill patients.
Journal Article↗
Generalists and oncologists show similar care practices and outcomes for hospitalized late-stage cancer patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks for Treatment.
OBJECTIVE: The objective of this work was to identify similarities and differences in primary attending physicians' (generalists' versus oncologists') care practices and outcomes for seriously ill hospitalized patients with malignancy. DESIGN: This was a prospective cohort study (SUPPORT project). SETTING: Subjects were recruited from 5 US teaching hospitals; data were gathered from 1989 to 1994. SUBJECTS: Included in the study was a matched sample of 642 hospitalized patients receiving care for non-small-cell lung cancer, colon cancer metastasized to the liver, or multiorgan system failure associated with malignancy with either a generalist or an oncologist as the primary attending physician. MEASUREMENTS: Care practices and patient outcomes were determined from hospital records. Length of survival was identified with the National Death Index. Physicians' perceptions of patient's prognosis, preference for cardiopulmonary resuscitation (CPR), and length of relationship were assessed by interview. A propensity score for receiving care from an oncologist was constructed. After propensity-based matching of patients, practices and outcomes of oncologists' and generalists' patients were assessed through group comparison techniques. RESULTS: Generalist and oncologist attendings showed comparable care practices, including the number of therapeutic interventions, eg, "rescue care" and chemotherapy, and the number of care topics discussed with patients/ families. Length of stay, discharge to supportive care, readmission, total hospital costs, and survival rates were similar. For both physician groups, perception of patients' wish for CPR was associated with rescue care (P < 0.03), and such care was related to higher hospital costs (P < 0.000). Poorer prognostic estimates predicted aggressiveness-of-care discussions by both types of physicians. Length of the patient-doctor relationship was associated with oncologists' care practices. More documented discussion about aggressiveness of care was related to higher hospital costs and shorter survival for patients in both physician groups (P < 0.001). CONCLUSIONS: Generalists and oncologists showed similar care practices and outcomes for comparable hospitalized late-stage cancer patients. Physicians' perceptions about patients' preferences for CPR and prognosis influenced decision making and outcomes for patients in both physician groups. Length of relationship with patients was associated only with oncologists' care practices. Rescue care increased hospital costs but had no effect on patient survival. Future studies should compare physicians' palliative care as well as acute-care practices in both inpatient and ambulatory care settings. Patients' end-of-life quality and interchange between physician groups should also be documented and compared.
Adult↗
The last six months of life for patients with congestive heart failure.
OBJECTIVE: To characterize the experiences of patients with congestive heart failure (CHF) during their last 6 months of life. DESIGN: A retrospective analysis of data from a prospective cohort study. SETTING: Five geographically diverse tertiary care academic medical centers. PARTICIPANTS: A total of 1404 patients enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) with a diagnosis of an acute exacerbation of CHF, of whom 539 patients died within 1 year of their index hospitalization. METHODS: Data from interviews with patients or their surrogates were collected and chart abstractions performed at several time points in SUPPORT. To describe progression to death, we constructed four observational windows backward in time, beginning with patients' dates of death and ending with their date of entry into the SUPPORT project or 6 months before death, whichever came first. For each outcome, patients contributed information to all windows for which they had data collected. We describe frequency distributions for each outcome over time and report tests for trend. OUTCOME MEASURES: Outcomes examined over time included: percentage of days spent in a hospital; model-based prognostic estimates of 6-month survival; functional status; occurrence of severe physical and emotional symptoms, including pain, depression and anxiety; patients' preferences for care; and the financial impact of patients' illnesses on their families. RESULTS: As death approached, patients' prognoses became poorer and illnesses more severe. Median Acute Physiology Scores for hospitalized patients rose from 33 in the interval 6 months to 3 months before death, to 44 within 3 days of death. However, the median model-based estimate of 6-month survival was 54% even within 3 days of death. Number of functional impairments, median depression scores and percent of patients reporting severe pain or dyspnea increased as death approached, with 41% of patient surrogates reporting that the patient was in severe pain and 63% reporting that the patient was severely short of breath during the 3 days before death. Perceived quality of life did not change appreciably, with 29 to 58 % of patients reporting good to excellent quality of life in all intervals before death. As death approached, patients were more likely to prefer Do Not Resuscitate (DNR) status, with the percent of patients preferring DNR rising from 33% at 6 months to 3 months before death to 47% at 1 month to 3 days before death (P < .05). The frequency with which DNR orders were written for hospitalized patients also increased as death approached. The patients' illnesses had marked financial impact on their families, with 23 % of patients' families reporting the loss of most or all of family savings at the time of the patient's death. CONCLUSIONS: As death approaches during the last 6 months of life in CHF, illness becomes more severe, disability and the experience of certain symptoms more frequent, and patient preference not to be resuscitated more common. However, there is no significant decrement in quality of life as death approaches. Reflecting the unpredictable course of CHF during the last month of life, many patients have good median model-based 6-month prognoses and enjoy good to excellent quality of life.
APACHE↗
Dying with cancer: patients' function, symptoms, and care preferences as death approaches.
OBJECTIVE: To characterize the dying experience of patients with cancer over the last 6 months of life. STUDY DESIGN: A retrospective analysis of the last 6 months of life among patients with colon cancer and non-small cell lung cancer enrolled in a prospective cohort study from June 1989 to June 1991 and from January 1992 to January 1994. SETTING: Five geographically diverse tertiary care academic medical centers participating in the Study to Understand Patient Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) Project. PARTICIPANTS: All patients enrolled in SUPPORT who had either colon cancer, metastatic to the liver or stage III or stage IV non-small cell lung cancer and died within 1 year of their index hospitalization. This report examines 316 of 520 patients with metastatic colon cancer and 747 of 939 patients with lung cancer enrolled in SUPPORT. METHODS: Data were collected by interview and chart abstraction at several time points in the SUPPORT Project. To describe progression to death, we constructed four observational windows backward in time beginning with patients' date of death and ending with their date of entry into the SUPPORT Project or 6 months before their death, whichever came first: (1) 3 days before death, (2) 3 days to 1 month before death, (3) 1 month to 3 months before death, and (4) 3 months to 6 months before death. For each outcome, patients contributed information to all windows during which they had data collected. We describe the frequency distributions of each outcome over time and report tests for trend. OUTCOME MEASURES: We examined several outcomes over time, including: percentage of days spent in a hospital; prognosis as measured by model-based prognostic estimates of 6-month survival; severity of illness as measured by the acute physiology score; functional status as measured by dependencies in activities of daily living (ADLs); severe physical and emotional symptoms, including pain, depression, and anxiety; patients' preferences for care; and the financial impact on patients' families. RESULTS: The death rate within 1 year of study entry was high among patients with metastatic colon cancer and advanced non-small cell lung cancer enrolled in SUPPORT (61% and 80%, respectively). As patients with cancer progress toward death, their estimated 6-month prognosis decreases significantly and the severity of their disease worsens. Patients' functional status also declines significantly as they approach death, such that most patients have four or more impairments within the 3 days before death. Patients with cancer experience significantly more pain and confusion as death approaches. Severe pain is common; more than one-quarter of patients with cancer experience serious pain 3 to 6 months before death and more than 40% were in serious pain during their last 3 days of life. However, dying patients are only modestly depressed and anxious during their last 3 days of life. As death approaches, patients favor comfort measures over life-extension, and about two-thirds want to forego resuscitation within 3 days of death. Families of patients dying with cancer incurred significant financial burdens during the last 6 months of life, and much of this burden was already experienced by 3 to 6 months before death. CONCLUSIONS: The last 6 months of life for patients with cancer is characterized by functional decline and poorly controlled severe pain and confusion. Although patients increasingly prefer comfort care as they near death, many die in severe pain. These findings highlight important opportunities to improve the quality of care at the end of life for patients dying with cancer.
Activities of Daily Living↗
Elderly persons' last six months of life: findings from the Hospitalized Elderly Longitudinal Project.
BACKGROUND: Few studies describe the end of life in very old people. OBJECTIVES: To characterize the last 6 months of life and dying in patients 80 years and older by describing demographic characteristics, functional state and quality of life, symptoms, preferences, use of life-sustaining treatments, satisfaction with care, and family burden. DESIGN: A retrospective analysis for patients enrolled in a prospective cohort study. SETTING: Four teaching hospitals who participated in the Hospitalized Elderly Longitudinal Project (HELP). SUBJECTS: 417 patients who died within 1 year of their enrollment hospitalization. MEASUREMENTS: Chart reviews and interview data with patients and surrogates at several points in time. We constructed four observational time windows backward in time beginning with the patients' death. RESULTS: Before hospitalization, two out of three patients reported fair quality of life, and patients averaged 2.4 impairments in activities of daily living. Seventy percent preferred comfort care on the third day of hospitalization. During the last month of life, three of five patients interviewed in the hospital and four of five interviewed out of the hospital preferred not to be resuscitated. At the time of death, four of five patients had a do not resuscitate (DNR) order and two of five had an order to withhold a ventilator. During the last month of life, one out of four patients reported severe pain. CONCLUSIONS: Patients reported increasing functional impairments and limited quality of life. The majority preferred comfort care. The number of patients in severe pain was substantial. Before death, the majority had measures in place to limit aggressive care.
Activities of Daily Living↗
Dying with acute respiratory failure or multiple organ system failure with sepsis.
BACKGROUND: The dying experience of patients with acute respiratory failure (ARF) or multiple organ system failure with sepsis (MOSF) has not been described. OBJECTIVES: To describe patients dying from ARF or MOSF, including demographic characteristics, baseline function and quality of life, symptoms, preferences, use of life-sustaining treatments, satisfaction with care, and family burden. DESIGN: A multicenter prospective study. SETTING: Five US teaching hospitals, in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). PARTICIPANTS: A total of 1295 adults who died during hospitalization for ARF or MOSF. MEASUREMENTS: Chart reviews and interviews with patients and surrogates. RESULTS: SUPPORT enrolled 2956 patients with ARF or MOSF, and 44% died during enrollment hospitalization. Quality of life before hospitalization was reported as fair by 87% of patients. The mean number of impairments in their baseline activities of daily living was 1.6. At the time of death, 79% had a DNR order and 31% had an order to withhold ventilator support. The average time from the DNR order to death was 2 days. Dying patients spent an average of 9 days on a ventilator. Surrogates indicated that one out of four patients died with severe pain and one out of three with severe confusion. Families of 42% of the patients who died reported one or more substantial burden. CONCLUSIONS: Patients in this study reported substantial functional impairments and reduced quality of life. Limitations to aggressive treatments were usually implemented only when death was imminent. Family impact and physical and emotional suffering were substantial.
Activities of Daily Living↗
Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
CONTEXT: Many are calling for patients with advanced chronic obstructive pulmonary disease (COPD) to receive hospice care, but the traditional hospice model may be insufficient. OBJECTIVE: To compare the course of illness and patterns of care for patients with non-small cell lung cancer and severe COPD. DESIGN: Prospective cohort study of seriously ill, hospitalized adults. SETTING: Five teaching hospitals in the United States. PATIENTS: Patients with Stage III or IV non-small cell lung cancer (n = 939) or acute exacerbation of severe COPD (n = 1008). MAIN OUTCOME MEASURES: Patients' preferences for pattern of care and for ventilator use; symptoms; life-sustaining interventions; and survival prognoses. RESULTS: Sixty percent in each group wanted comfort-focused care; 81% with lung cancer and 78% with COPD were extremely unwilling to have mechanical ventilation indefinitely. Severe dyspnea occurred in 32% of patients with lung cancer and 56% of patients with COPD and severe pain in 28 % of patients with lung cancer and 21% of patients with COPD. Patients with COPD who died during index hospitalization were more likely than patients with lung cancer to receive mechanical ventilation (70.4% vs 19.8%), tube feeding (38.7% vs 18.5%), and cardiopulmonary resuscitation (25.2% vs 7.8%). Mechanical ventilation had greater short term effectiveness in patients with COPD, based on survival to hospital discharge (76% vs 38%). Patients with COPD maintained higher median 2-month and 6-month survival prognoses, even days before death. CONCLUSIONS: Hospitalized patients with lung cancer or COPD preferred comfort-focused care, yet dyspnea and pain were problematic in both groups. Patients with COPD were more often treated with life-sustaining interventions, and short-term effectiveness was comparatively better than in patients with lung cancer. In caring for patients with severe COPD, consideration should be given to implementing palliative treatments more aggressively, even while remaining open to provision of life-sustaining interventions.
Activities of Daily Living↗
Prediction of survival for older hospitalized patients: the HELP survival model. Hospitalized Elderly Longitudinal Project.
OBJECTIVE: To develop and validate a model estimating the survival time of hospitalized persons aged 80 years and older. DESIGN: A prospective cohort study with mortality follow-up using the National Death Index. SETTING: Four teaching hospitals in the US. PARTICIPANTS: Hospitalized patients enrolled between January 1993 and November 1994 in the Hospitalized Elderly Longitudinal Project (HELP). Patients were excluded if their length of hospital stay was 48 hours or less or if admitted electively for planned surgery. MEASUREMENTS: A log-normal model of survival time up to 711 days was developed with the following variables: patient demographics, disease category, nursing home residence, severity of physiologic imbalance, chart documentation of weight loss, current quality of life, exercise capacity, and functional status. We assessed whether model accuracy could be improved by including symptoms of depression or history of recent fall, serum albumin, physician's subjective estimate of prognosis, and physician and patient preferences for general approach to care. RESULTS: A total of 1266 patients were enrolled over a 10-month period, (median age 84.9, 61% female, 68% with one or more dependency), and 505 (40%) died during an average follow-up of more than 2 years. Important prognostic factors included the Acute Physiology Score of APACHE III collected on the third hospital day, modified Glasgow coma score, major diagnosis (ICU categories together, congestive heart failure, cancer, orthopedic, and all other), age, activities of daily living, exercise capacity, chart documentation of weight loss, and global quality of life. The Somers' Dxy for a model including these factors was 0.48 (equivalent to a receiver-operator curve (ROC) area of 0.74, suggesting good discrimination). Bootstrap estimation indicated good model validation (corrected Dxy of 0.46, ROC of 0.73). A nomogram based on this log-normal model is presented to facilitate calculation of median survival time and 10th and 90th percentile of survival time. A count of geriatric syndromes or comorbidities did not add explanatory power to the model, nor did the hospital of patient recruitment, depression, or the patient preferences for general approach to care. The physician's perception of the patient's preferences and the physician's subjective estimate of the patient's prognosis improved the estimate of survival time significantly. CONCLUSIONS: Accurate estimation of length of life for older hospitalized persons may be calculated using a limited amount of clinical information available from the medical chart plus a brief interview with the patient or surrogate. The accuracy of this model can be improved by including measures of the physician's perception of the patient's preferences for care and the physician's subjective estimate of prognosis.
Activities of Daily Living↗
Length of stay and therapeutic intervention allow estimation of in-hospital resource use independent of site and inflation.
OBJECTIVES: To develop and evaluate a model to estimate inpatient resource utilization for seriously ill patients using periodic medical record abstraction and hospital length of stay. DESIGN: A prospective cohort study of prognoses and preferences and outcomes of seriously ill hospitalized adults. The predictive model was based on the Therapeutic Intervention Scoring System (TISS), length of stay (LOS), and hospital site, and was developed on Phase I data and validated on Phase II data. SETTING: Five teaching hospitals in the United States PARTICIPANTS: The derivation sample included 4301 patients enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). The validation sample included 4804 patients. MEASUREMENTS: Hospital charges were correlated with the product of hospital length of stay and average score from the TISS. Model fit assessment used R2 for total hospital charges. RESULTS: The correlation between hospital charges and the final model, after adjusting for site differences, was 0.86. The correlation was similar when validating the model in an independent data set. CONCLUSIONS: We present a method to estimate hospital resource utilization that is independent of site and inflation and can estimate actual costs in multiyear, multisite research endeavors.
Aged↗
Survey methods for seriously ill hospitalized adults: practical lessons from SUPPORT. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.
OBJECTIVE: To describe issues confronted in collecting questionnaire-based data in a large study of seriously ill hospitalized adults, discuss methods used to achieve acceptable results, summarize the reliability of selected measures, and explore challenges for patient-based research in this population. DESIGN: A prospective cohort study. SETTING: Five teaching hospitals in the US. PARTICIPANTS: 9105 patients, with a subset of 80 patients and 10 proxy respondents for reliability testing. MEASUREMENTS AND MAIN OUTCOMES: Response rates; percent agreement and Kappa statistics to assess test-retest reliability. RESULTS: A pretest and pilot test were used to help develop the assessment strategy, establish study procedures, and identify staff characteristics likely to facilitate the project. Achieving adequate response rates required great perseverance and flexibility by interview staff as well as close monitoring and central supervision. Standardized quality assurance with timely feedback, and social support provided by peer and supervising staff were both important. Older women proved to be the best interviewers. Reliability was acceptable for existing and newly developed scales to measure subjective health status, preferences, and satisfaction. CONCLUSIONS: It was possible to collect reliable and useful data on preferences and subjective health outcomes from a cohort of seriously ill hospitalized patients and their proxies. Achieving acceptable data quality required a large interview team, mature staff, flexibility about modes of administration, and centralized, structured quality assurance. Successful outcomes research in this population is likely to require similar planning and efforts.
Activities of Daily Living↗