International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data.

BACKGROUND: Where people die can influence a number of indicators of the quality of dying. We aimed to describe the place of death of people with cancer and its associations with clinical, socio-demographic and healthcare supply characteristics in 14 countries. METHODS: Cross-sectional study using death certificate data for all deaths from cancer (ICD-10 codes C00-C97) in 2008 in Belgium, Canada, Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (2010), USA (2007) and Wales (N=1,355,910). Multivariable logistic regression analyses evaluated factors associated with home death within countries and differences across countries. RESULTS: Between 12% (South Korea) and 57% (Mexico) of cancer deaths occurred at home; between 26% (Netherlands, New Zealand) and 87% (South Korea) occurred in hospital. The large between-country differences in home or hospital deaths were partly explained by differences in availability of hospital- and long-term care beds and general practitioners. Haematologic rather than solid cancer (odds ratios (ORs) 1.29-3.17) and being married rather than divorced (ORs 1.17-2.54) were most consistently associated with home death across countries. CONCLUSIONS: A large country variation in the place of death can partly be explained by countries' healthcare resources. Country-specific choices regarding the organisation of end-of-life cancer care likely explain an additional part. These findings indicate the further challenge to evaluate how different specific policies can influence place of death patterns.

Validation of Toolkit After-Death Bereaved Family Member Interview.

The purpose of this study was to examine the reliability and validity of the Toolkit After-Death Bereaved Family Member Interview to measure quality of care at the end of life from the unique perspective of family members. The survey included proposed problem scores (a count of the opportunity to improve the quality of care) and scales. Data were collected through a retrospective telephone survey with a family member who was interviewed between 3 and 6 months after the death of the patient. The setting was an outpatient hospice service, a consortium of nursing homes, and a hospital in New England. One hundred fifty-six family members from across these settings participated. The 8 proposed domains of care, as represented by problem scores or scales, were based on a conceptual model of patient-focused, family-centered medical care. The survey design emphasized face validity in order to provide actionable information to health care providers. A correlational and factor analysis was undertaken of the 8 proposed problem scores or scales. Cronbach's alpha scores varied from 0.58 to 0.87, with two problem scores (each of which had only 3 survey items) having a low alpha of 0.58. The mean item-to-total correlations for the other problem scores varied from 0.36 to 0.69, and the mean item-to-item correlations were between 0.32 and 0.70. The proposed problem scores or scales, with the exception of closure and advance care planning, demonstrated a moderate correlation (i.e., from 0.44 to 0.52) with the overall rating of satisfaction (as measured by a five-point, "excellent" to "poor" scale). Family members of persons who died with hospice service reported fewer problems in each of the six domains of medical care, gave a higher rating of the quality of care, and reported higher self-efficacy in caring for their loved ones. These results indicate that 7 of the 8 proposed problem scores or scales demonstrated psychometric properties that warrant further testing. The domain of closure demonstrated a poor correlation with overall satisfaction and requires further work. This survey could provide information to help guide quality improvement efforts to enhance the care of the dying.

Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members.

A fundamental barrier to improving the quality of medical care at the end of life is the lack of measurement tools. The Toolkit of Instruments to Measure End of Life Care (TIME) aims to fill that void by creating measurement tools that capture the patient and family perspective. To develop a conceptual model for a retrospective survey of bereaved family members that incorporates both professional and family perspectives on what constitutes good care at the end of life, a qualitative literature review of existing professional guidelines and six focus groups with bereaved family members from acute care hospitals (n = 2), nursing homes (n = 2), and hospice/VNA home health services (n = 2) was performed. The focus groups were held in Arizona, New York, and Massachusetts and included 42 bereaved family members/friends contacted 3-12 months from the time of patient's death. Domains of care that define quality end-of-life care were defined. Focus group participants defined high quality medical care as: 1) providing dying persons with desired physical comfort; 2) helping dying persons control decisions about medical care and daily routines; 3) relieving family members of the burden of being present at all times to advocate for their loved one; 4) educating family members so they felt confident to care for their loved ones at home; and 5) providing family members with emotional support both before and after the patient's death. The qualitative literature review yielded similar results, except that the professional guidelines did not mention the advocacy burden felt by families. These two sources provided the foundation for a conceptual model of patient-focused, family-centered medical care and a new tool for surveying bereaved family members. Views of bereaved family members' stories and professional guidelines help to identify key domains of quality of end-of-life care. A new survey instrument provides a way to incorporate the perspectives of bereaved family members in measuring the quality of end-of-life care.

Are aggressive treatment strategies less cost-effective for older patients? The case of ventilator support and aggressive care for patients with acute respiratory failure.

OBJECTIVES: A common assumption is that life-sustaining treatments are much less cost-effective for older patients than for younger patients. We estimated the incremental cost-effectiveness of providing mechanical ventilation and intensive care for patients of various ages who had acute respiratory failure. DESIGN: Retrospective analysis of data on acute respiratory failure from Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). SETTING: Acute hospital. PARTICIPANTS: 1,005 with acute respiratory failure; 963 received ventilator support and 42 had ventilator support withheld. MEASUREMENTS: We studied 1,005 patients enrolled in a five-center study of seriously ill patients (SUPPORT) with acute respiratory failure (pneumonia or acute respiratory distress syndrome and an Acute Physiology Score > or = 10) requiring ventilator support. For cost-effectiveness analyses, we estimated life expectancy based on long-term follow-up of SUPPORT patients and estimated utilities (quality-of-life weights) using time-tradeoff questions. We used hospital fiscal data and Medicare data to estimate healthcare costs. We divided patients into three age groups (< 65, 65-74, and > or = 75 years); for each age group, we performed separate analyses for patients with a < or = 50% probability of surviving at least 2 months (high-risk group) and those with a > 50% probability of surviving at least 2 months (low-risk group). RESULTS: Of the 963 patients who received ventilator support, 44% were female; 48% survived 6 months; and the median (25th, 75th percentile) age was 63 (46, 75) years. For the 42 patients for whom ventilator support was withheld, the median survival was 3 days. For low-risk patients (> 50% estimated 2-month survival), the incremental cost (1998 dollars) per quality-adjusted life-year (QALY) saved by providing ventilator support and aggressive care increased across the three age groups ($32,000 for patients age < 65, $44,000 for those age 65-74, and $46,000 for those age > or = 75). For high-risk patients, the incremental cost-effectiveness was much less favorable and was least favorable for younger patients ($130,000 for patients age < 65, $100,000 for those age 65-74, and $96,000 for those age > or = 75). When we varied our assumptions from 50% to 200% of our baseline estimates in sensitivity analyses, results were most sensitive to the costs of the index hospitalization. CONCLUSIONS: For patients with relatively good short-term prognoses, we found that ventilator support and aggressive care were economically worthwhile, even for patients 75 years and older. For patients with poor short-term prognoses, ventilator support and aggressive care were much less cost-effective for adults of all ages.

Dying trajectory in the last year of life: does cancer trajectory fit other diseases?

PURPOSE: To examine differences in the pattern of functional decline among persons dying of cancer and other leading noncancer causes of death. DESIGN: Mortality followback survey of next of kin listed on death certificate. SETTING: Probability sample of all deaths in the United States. PARTICIPANTS: Next of kin for 3,614 decedents that represented 914,335 deaths. MEASUREMENTS: Days of difficulty with activities of daily living and mobility in the last year of life. RESULTS: Relative to other decedents, patients with cancer experienced an increased rate of functional impairment beginning as late as 5 months prior to death. For example, only 13.9% of patients with cancer had difficulty getting out of bed or a chair 1-year prior to death. This increased from 22.2% to 63.0% in the last five months of life. In contrast, decedents from other diseases had higher rates of functional impairment 1 year prior to death (approximately 35% had difficulty getting out of bed or chair) and they manifested a more gradual increase in the level of functional decline (approximately 50% had difficulty getting out of bed). Precipitous functional decline was associated with hospice involvement and dying at home. CONCLUSION: Persons dying of cancer experienced sharp functional decline in the last months of life whereas other decedents' have a more gradual decline. The more precipitous functional decline was associated with hospice involvement and dying at home.

Outcomes and cost-effectiveness of ventilator support and aggressive care for patients with acute respiratory failure due to pneumonia or acute respiratory distress syndrome.

PURPOSE: Many patients with acute respiratory failure die despite prolonged and costly treatment. Our objective was to estimate the cost-effectiveness of providing rather than withholding mechanical ventilation and intensive care for patients with acute respiratory failure due to pneumonia or acute respiratory distress syndrome. SUBJECTS AND METHODS: We studied 1,005 patients enrolled in a five-center study of seriously ill patients (the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments [SUPPORT]) with acute respiratory failure (pneumonia or acute respiratory distress syndrome and an Acute Physiology Score > or =10) who required ventilator support. We estimated life expectancy based on long-term follow-up of SUPPORT patients. Utilities were estimated using time-tradeoff questions. Costs (in 1998 dollars) were based on hospital fiscal data and Medicare data. RESULTS: Of the 963 patients who received ventilator support, 48% survived for at least 6 months. At 6 months, survivors reported a median of 1 dependence in activities of daily living, and 72% rated their quality of life as good, very good, or excellent. Among the 42 patients in whom ventilator support was withheld, the median survival was 3 days. Among patients whose estimated probability of surviving at least 2 months from the time of ventilator support ("prognostic estimate") was 70% or more, the incremental cost per quality-adjusted life-year (QALY) saved by providing rather than withholding ventilator support and aggressive care was $29,000. For medium-risk patients (prognostic estimate 51% to 70%), the incremental cost-effectiveness was $44,000 per QALY, and for high-risk patients (prognostic estimate < or =50%), it was $110,000 per QALY. When assumptions were varied from 50% to 200% of baseline estimates, the results ranged from $19,000 to $48,000 for low-risk patients, from $29,000 to $76, 000 for medium-risk patients, and from $67,000 to $200,000 for high-risk patients. CONCLUSIONS: Ventilator support and intensive care for acute respiratory failure due to pneumonia or acute respiratory distress syndrome are relatively cost-effective for patients with >50% probability of surviving 2 months. However, for patients with an expected 2-month survival < or =50%, the cost per QALY is more than threefold greater at >$100,000.

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.

Age-related differences in care preferences, treatment decisions, and clinical outcomes of seriously ill hospitalized adults: lessons from SUPPORT.

OBJECTIVES: To review previously published findings about how patient age influenced patterns of care for seriously ill patients enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). DESIGN: An observational prospective study. SETTING: Five acute care hospitals. PARTICIPANTS: A total of 9105 seriously ill patients enrolled in SUPPORT. MEASUREMENTS: The outcomes examined included patients' preferences for aggressive care, decision making regarding cardiopulmonary resuscitation and use of other life-sustaining treatments, hospital costs, intensity of resource use, and survival. RESULTS: Although older patients preferred less aggressive care than younger patients, many older patients wanted cardiopulmonary resuscitation and care focused on life extension. Patients' families and healthcare providers underestimated older patients' desire for aggressive care. After adjustment for illness severity, comorbidity, baseline function, and patients' preferences for aggressive care, older age was associated with lower hospital costs and resource intensity and higher rates of decisions to withhold life-sustaining treatments. In adjusted analyses, older age was associated with a slight survival disadvantage. This survival disadvantage persisted, even after adjustment for aggressiveness of care, suggesting that the relation between age and survival is not accounted for by less aggressive treatment of older patients. CONCLUSIONS: Even after adjustment for patients' prognoses and care preferences, seriously ill hospitalized older patients were treated less aggressively than younger patients. SUPPORT cannot fully identify whether the relationship between older age and less aggressive treatment is better explained by the withholding of potentially beneficial treatments from older patients, or by the excessive provision of ineffective treatment to younger patients. However, the latter explanation is favored by the SUPPORT finding that less aggressive treatment for older patients does not contribute to the modest survival disadvantage associated with older age.

Communication and decision-making in seriously ill patients: findings of 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) represents one of the largest and most comprehensive efforts to describe patient preferences in seriously ill patients, and to evaluate how effectively patient preferences are communicated. Our objective was to review findings from SUPPORT describing the communication of seriously ill patients' preferences for end-of-life care. METHODS: We identified published reports from SUPPORT describing patient preferences and the communication of those preferences. We abstracted findings that addressed each of the following questions: What patient characteristics predict patient preferences for end of life care? How well do physicians, nurses, and surrogates understand their patients' preferences, and what variables are correlated with this understanding? Does increasing the documentation of existing advance directives result in care more consistent with patients' preferences? RESULTS: Patients who are older, have cancer, are women, believe their prognoses are poor, and are more dependent in ADL function are less likely to want CPR. However, there is considerable variability and geographic variation in these preferences. Physician, nurse, and surrogate understanding of their patient's preferences is only moderately better than chance. Most patients do not discuss their preferences with their physicians, and only about half of patients who do not wish to receive CPR receive DNR orders. Factors other than the patients' preferences and prognoses, including the patient's age, the physician's specialty, and the geographic site of care were strong determinants of whether DNR orders were written. In SUPPORT patients, there was no evidence that increasing the rates of documentation of advance directives results in care that is more consistent with patients' preferences. CONCLUSIONS: SUPPORT documents that physicians and surrogates are often unaware of seriously ill patients' preferences. The care provided to patients is often not consistent with their preferences and is often associated with factors other than preferences or prognoses. Improving these deficiencies in end-of-life care may require systematic change rather than simple interventions.

Predicting functional status outcomes in hospitalized patients aged 80 years and older.

OBJECTIVE: To develop a model estimating the probability of a patient aged 80 years or older having functional limitations 2 months and 12 months after being hospitalized. DESIGN: A prospective cohort study. SETTING: Four teaching hospitals in the US. PARTICIPANTS: Enrolled patients were nonelective hospital admissions aged 80 years or older who stayed in hospital at least 48 hours. The 804 patients who survived and completed an interview at 2 months and the 450 who completed an interview at 12 months were from the 1266 patients in the Hospitalized Elderly Longitudinal Project (HELP) (76% and 47% of survivors, respectively). Median age of the 2-month survivors was 84.7 years. MEASUREMENTS AND MAIN OUTCOMES: Patient function 2 and 12 months after enrollment was defined by the number of dependencies in Activities of Daily Living (ADLs). Ordinal logistic regression models were constructed to predict functional status. Predictors included demographic characteristics, disease category, geriatric conditions, severity of physiologic imbalance, current quality of life, and exercise capacity and ADLs 2 weeks before study admission. RESULTS: Before admission, 39% of patients were functionally independent in ADLs. Of patients who survived and were interviewed at 2 months, 32% were functionally independent, and at 12 months, 36% were independent. Among patients with no baseline dependencies, 42% had developed one or more limitations 2 months later, and 41 % had limitations 12 months later. The patient's ability to perform activities of daily living at baseline was the most important predictor of functional status at both 2 and 12 months. In a multivariable predictive model, independent predictors of poorer functional status at 2 months included: worse baseline functional status and quality of life; depth of coma, if any; lower serum albumin level; presence of dementia, depression, or incontinence; being bedridden; medical record documentation of need for nursing home; and older age. Model performance, assessed using Somers' D, was 0.61 for 2 months and 0.57 for 12 months (Receiver Operating Characteristic (ROC) area = 0.81 and .79, respectively.) Bootstrap validation of the month 2 model also yielded a Somers' D = 0.60. The models were well calibrated over the entire risk range. The ROC area for prediction of the loss of independence was 0.76 for 2 months and 0.68 for 12 months. CONCLUSIONS: Many older patients are functionally impaired at the time of hospitalization, and many develop new functional limitations. A limited amount of readily available clinical information can yield satisfactory predictions of functional status 2 months after hospitalization. Models like this may prove to be useful in clinical care. This work illuminates a potential method for risk adjustment in research studies and for monitoring quality of care.

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.

Physician understanding of patient resuscitation preferences: insights and clinical implications.

OBJECTIVE: To describe physician understanding of patient preferences concerning cardiopulmonary resuscitation (CPR) and to assess the relationship of physician understanding of patient preferences with do not resuscitate (DNR) orders and in-hospital CPR. DESIGN: We evaluated physician understanding of patient CPR preference and the association of patient characteristics and physician-patient communication with physician understanding of patient CPR preferences. Among patients preferring to forego CPR, we compared attempted resuscitations and time to receive a DNR order between patients whose preference was understood or misunderstood by their physician. PATIENTS/SETTING: Seriously ill hospitalized adult patients were enrolled in the Study to Understand Prognoses and Preferences for the Outcomes of Treatments. GENERAL RESULTS: Physicians understood 86% of patient preferences for CPR, but only 46% of patient preferences to forego CPR. Younger patient age, higher physician-estimated quality of life, and higher physician prediction of 6-month survival were independently associated with both physician understanding when a patient preferred to receive CPR and physician misunderstanding when a patient preferred to forego CPR. Physicians who spoke with patients about resuscitation and had longer physician-patient relationships understood patients' preferences to forego CPR more often. Patients whose physicians understood their preference to forego CPR more often received DNR orders, received them earlier, and were significantly less likely to undergo resuscitation. CONCLUSIONS: Physicians often misunderstand seriously ill, hospitalized patients' resuscitation preferences, especially preferences to forego CPR. Factors associated with misunderstanding suggest that physicians infer patients' preferences without asking the patient. Patients who prefer to forego CPR but whose wishes are not understood by their physician may receive unwanted treatment.

A prospective study of patient-physician communication about resuscitation.

OBJECTIVE: To evaluate prospectively seriously ill patients' characteristics, perceptions, and preferences associated with discussing resuscitation (CPR) with their physicians. DESIGN: Prospective cohort. SETTING: Five academic medical centers. PARTICIPANTS: Patients enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments who had not communicated with their physicians about CPR at admission to a hospital for life-threatening illness (n = 1288). MEASUREMENTS: Baseline surveys of patients' characteristics, health status, desires for participation in medical decision making, and cardiopulmonary resuscitation. Two month follow-up surveys of patients' communication of resuscitation preference. Chart reviews for clinical indicators. RESULTS: Thirty percent of patients communicated their resuscitation preference to their physician during a 2 month-period following hospital admission. Patients whose preference was to forego CPR (odds ratio (OR) 2.9;(95% CI, 1.9-4.2)) and whose preference had changed from desiring to foregoing CPR (OR 1.6; (95% CI, 1.1-2.4)) were more likely to communicate their preference than patients who continued to prefer to receive CPR. However, only 50% of patients who maintained a preference to forego CPR communicated this over a 2-month period. Having an advance directive and remaining in the hospital at 2-month follow-up were also independently associated with communication, whereas patients' preference for participation in decision-making, health status, and prognostic estimate were not. CONCLUSIONS: Communication about resuscitation preferences occurred infrequently after hospital admission for a serious illness, even among patients wishing to forego resuscitation. Factors such as declining quality of life, which were expected to be associated with communication, were not. An invitation to communicate about CPR preference is important after hospital admission for a serious illness. Novel approaches are needed to promote physician-patient discussions about resuscitation.

Family satisfaction with end-of-life care in seriously ill hospitalized adults.

OBJECTIVE: To examine factors associated with family satisfaction with end-of-life care in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). DESIGN: A prospective cohort study with patients randomized to either usual care or an intervention that included clinical nurse specialists to assist in symptom control and facilitation of communication and decision-making. SETTING: Five teaching hospitals in the United States. PARTICIPANTS: Family members and other surrogate respondents for 767 seriously ill hospitalized adults who died. MEASUREMENTS: Eight questionnaire items regarding satisfaction with the patient's medical care expressed as two scores, one measuring satisfaction with patient comfort and the other measuring satisfaction with communication and decision-making. RESULTS: Sixteen percent of respondents reported dissatisfaction with patient comfort and 30% reported dissatisfaction with communication and decision-making. Factors found to be significantly associated with satisfaction with communication and decision-making were hospital site, whether death occurred during the index hospitalization (adjusted odds ratio (AOR) 2.2, 95% CI, 1.3-3.9), and for patients who died following discharge, whether the patient received the SUPPORT intervention (AOR 2.0, 1.2-3.2). For satisfaction with comfort, male surrogates reported less satisfaction (0.6, 0.4-1.0), surrogates who reported patients' preferences were followed moderately to not at all had less satisfaction (0.2, 0.1-0.4), and surrogates who reported the patient's illness had greater effect on family finances had less satisfaction (0.4, 0.2-0.8). CONCLUSIONS: Satisfaction scores suggest the need for improvement in end-of-life care, especially in communication and decision making. Further research is needed to understand how factors affect satisfaction with end-of-life care. An intervention like that used in SUPPORT may help family members.

Decision-making and outcomes of prolonged ICU stays in seriously ill patients.

BACKGROUND: Despite concern about the high costs and the uncertain benefit of prolonged treatment in the intensive care unit (ICU), there has been little research examining decision-making and outcomes for patients with prolonged ICU stays. OBJECTIVES: To evaluate decision-making and outcomes for seriously ill patients with an ICU stay of at least 14 days. DESIGN: A prospective cohort study. SETTING: Five teaching hospitals. PARTICIPANTS: Seriously ill patients enrolled in the Study To Understand Prognoses and Preferences for Risks and Outcomes of Treatments (SUPPORT). MEASUREMENT: Patients, their surrogate decision-makers, and their physicians were interviewed about prognosis, communication, and goals of medical care. Based on age, diagnoses, comorbid illnesses, and acute physiology data, the SUPPORT Prognostic Model provided estimates of 6-month survival on study days 1, 3, 7, and 14. Hospital costs were estimated from hospital billing data. RESULTS: Of the 9105 patients enrolled in SUPPORT, 1494 (16%) had ICU stays of 14 days or longer. The median length of stay in an ICU was 4 days for the entire SUPPORT cohort and 35 days for patients who were treated in an ICU for 14 days or longer. Median hospital costs were $76,501 for patients who had ICU stays 14 days or longer and $10,916 for patients who did not have long ICU stays. Fifty-five percent of patients with long ICU stays had died by 6 months, and an additional 19% had substantial functional impairment. Among patients with ICU stays of at least 14 days, only 20% had estimates of 6-month survival that fell below 10% at any time during their hospitalization. For patients with long ICU stays, the mean predicted probability of 6-month survival was 0.46 on study Day 3 and 0.47 on study Day 14. Fewer than 40% of patients (or their surrogates) reported that their physicians had talked with them about their prognoses or preferences for life-sustaining treatment. Among the patients who preferred a palliative approach to care, only 29% thought that their care was consistent with that aim. Those who discussed their preferences for care with a physician were 1.9 times more likely to believe that treatment was in accord with their preferences for palliation (95% CI, 1.4-2.5) CONCLUSIONS: Prolonged ICU stays were expensive and were often followed by death or disability. Patients reported low rates of discussions with their physicians about their prognoses and preferences for life-sustaining treatments. Many preferred that care focus on palliation and believed that care was inconsistent with their preferences. Patients were more likely to receive care consistent with their preferences if they had discussed their care preferences with their physicians.

Withholding versus withdrawing life-sustaining treatment: patient factors and documentation associated with dialysis decisions.

OBJECTIVE: We evaluated prospectively the use of acute hemodialysis among hospitalized patients to identify demographic and clinical predictors of and chart documentation concerning dialysis withheld and withdrawn. DESIGN: Prospective cohort study. SETTING: Five teaching hospitals. PATIENTS: Five hundred sixty-five seriously ill hospitalized patients who had not previously undergone dialysis who developed renal failure. MAIN OUTCOME MEASURES: Patient demographics, clinical characteristics, preferences, and prognostic estimates associated with having dialysis withheld rather than initiated and withdrawn rather than continued. Differences in chart documentation concerning decision-making for dialysis withheld, withdrawn, and continued. RESULTS: Older patient age, cancer diagnosis, and male gender were associated with dialysis withheld rather than withdrawn. Age and gender differences persisted after adjustment for patients' aggressiveness of care preference. Worse 2-month prognosis was associated with both withholding and withdrawing dialysis. Chart documentation of decision-making was lacking more often for patients with dialysis withheld than for dialysis withdrawn. CONCLUSIONS: Measuring the equity of life-sustaining treatment use will require evaluation of care withheld, not just care withdrawn. Older patients and men, after accounting for prognosis and function, are more likely to have dialysis withheld than withdrawn after a trial. Further exploration is needed into this disparity and the inadequate chart documentation for patients with dialysis withheld.

Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project.

OBJECTIVE: To determine the extent to which older or seriously ill inpatients would prefer to have their family and physician make resuscitation decisions for them rather than having their own stated preferences followed if they were unable to decide themselves. DESIGN: Analysis of existing data from the Hospitalized Elderly Longitudinal Project (HELP) and the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). SETTING: Five teaching hospitals in the United States. PARTICIPANTS: 2203 seriously ill adult inpatients (SUPPORT) and 1226 older inpatients (HELP) who expressed preferences about resuscitation and about advance decision-making. MEASURES: We used a logistic regression model to determine which factors predicted preferences for family and physician decision-making. RESULTS: Of the 513 HELP patients in this analysis, 363 (70.8%) would prefer to have their family and physician make resuscitation decisions for them whereas 29.2% would prefer to have their own stated preferences followed if they were to lose decision-making capacity. Of the 646 SUPPORT patients, 504 (78.0%) would prefer to have their family and physician decide and 22.0% would prefer to have their advance preferences followed. Independent predictors of preference for family and physician decision-making included not wanting to be resuscitated and having a surrogate decision-maker. CONCLUSIONS: Most inpatients who are older or have serious illnesses would not want their stated resuscitation preferences followed if they were to lose decision-making capacity. Most patients in both groups would prefer that their family and physician make resuscitation decisions for them. These results underscore the need to understand resuscitation preferences within a broader context of patient values.