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Communication in advance care planning: Preferences for surrogate involvement
Abstract
Improving the care of persons at the end of their lives is a major priority of medical associations and patient advocacy groups. Central to this effort is the need to better prepare health care surrogates so that they will be able to respect the dying person's wishes if that person loses decision making capacity. But efforts to facilitate communication between dying persons, their surrogates, and health care providers have not been fully successful. We conducted a telephone survey of 174 randomly selected adults from a mid‐sized university community to determine whom people wanted to function as their surrogate, to test the hypothesis that overconfidence in the surrogate's ability may impede communication, and to examine gender differences in communication preferences with surrogates. Spouses were the most frequently selected surrogate, followed by an adult child. Women were more likely to be selected than men were. As expected, persons overestimated their surrogates’ abilities to represent their interests. Two other predictions were not confirmed. Interactions between gender and whether the person was responding as a patient or surrogate were observed. These results confirm the value of applying uncertainty management theories to health issues and lead to recommendations for improving communication between patients and their surrogate decision makers.
This article is taken from a larger longitudinal study that used caregiver interviews, caregiver surveys, and caregiver statistical information of one community. The interviews were conducted with six spousal caregivers to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were interviewed multiple times over approximately 12 to 18 months. The author was the caregiver counselor and had worked in the community in social services for fifteen years. The narratives were analyzed using a phenomenological approach that allowed the development of descriptions of uncertainty and sharing caregiver narratives with a specialized audience. The duality of caregiver uncertainty based on making decisions for and about cognitively impaired care recipients is evident in diagnosis, safety, end-of-life decisions, and the caregivers' health. The choice of professional listeners as the audience when talking about uncertainty in illness relates to the importance of credible authority in reducing caregiver uncertainty.
This essay extends problematic integration theory and related theories of uncertainty management to communication about serious illness and death. These extensions (a) note that theorizing must focus on multiple, interrelated uncertainties rather than a single such uncertainty; (b) explain how communication with others often problematizes efforts to cope with illness-related uncertainties; and (c) identify specific factors that may influence how persons choose to cope with these uncertainties. The essay describes implications for ongoing efforts to improve communication with persons nearing death. Specifically, they point to 5 incorrect assumptions that limit the effectiveness of current efforts to encourage persons to talk about their end-of-life preferences with others in a process referred to as advance care planning and then suggest concrete changes derived from this framework that can improve the advance care planning process and enhance the quality of end-of- life care.
Claims that attributions and their related behaviors may reflect a type of perceived control that is generally overlooked. People attempt to gain control by bringing the environment into line with their wishes (primary control) and by bringing themselves into line with environmental forces (secondary control). Four manifestations of secondary control are considered: (a) Attributions to severely limited ability can serve to enhance predictive control and protect against disappointment; (b) attributions to chance can reflect illusory control, since people often construe chance as a personal characteristic akin to an ability ("luck"); (c) attributions to powerful others permit vicarious control when the individual identifies with these others; and (d) the preceding attributions may foster interpretive control, in which the individual seeks to understand and derive meaning from otherwise uncontrollable events in order to accept them. (5½ p ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
End-of-life (EOL) decisions made by and for elderly patients often perpetuate unwanted suffering at great expense. Recent efforts to improve the decision-making process have been ineffective. In this article, we argue that Babrow's (1992, 1995) problematic integration (PI) theory can enhance understandings of flaws in EOL decisions. Face-to-face interviews of 142 elderly hernodialysis patients were con- ducted to test predictions derived from the theory. Results supported the prediction that doctors would often fail to disclose the need for dialysis until a decision had to be made.
causal attributions / cognitive processes involved when people attempt to identify the causes of behaviors and events / intrapsychic processes / interpersonal aspects of attributions / attributional processes in groups / diffusion of responsibility
attributions and group outcomes / sources / attributional conflict / attributional bases of negative group processes / attributions and performance / status, reward allocation, and satisfaction (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Although withdrawal from dialysis is relatively common among dialysis patients, little is known about the patients' consideration of withdrawal during advance care planning. We studied a stratified random sample of 400 hemodialysis patients in two geographic areas (all six dialysis units within 75 miles of Morgantown, WV, and all nine dialysis units in Rochester, NY) by reviewing responses to a questionnaire addressing issues of advance care planning. Interviews were performed by trained interviewers during a routine hemodialysis treatment. Fifty-one percent of the patients had completed an advance directive (29% had a living will and a health care proxy, 22% had a living will or proxy). Patients who had completed advance directives were more likely to have notified their decision makers of their roles (91% with a living will and health care proxy, 81% with a living will or proxy v 55% who had no advance directive; P < 0.01). Most patients had not discussed their wishes for specific interventions in the event of permanent coma: 41% had discussed mechanical ventilation; 35%, tube feedings; 25%, cardiopulmonary resuscitation; and only 18% had discussed stopping dialysis. Patients who had completed a living will and proxy were most likely to have discussed end-of-life care, but stopping dialysis was the least often discussed intervention, even in this patient subset. Sixty-nine percent had discussed mechanical ventilation; 55%, tube feedings; 43%, cardiopulmonary resuscitation; and only 31% had discussed stopping dialysis (all P < 0.001). Although withdrawal from dialysis is relatively common, it is rarely discussed in advance care planning by dialysis patients. Dialysis unit staff and nephrologists should address issues involving withdrawal from dialysis with their chronic dialysis patients.
Most patients do not participate in advance care planning with physicians.
To examine patients' preferences for involving their physicians and families in advance care planning.
Face-to-face interviews with randomly selected patients.
Community-based dialysis units in one rural and one urban region.
400 hemodialysis patients.
Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care.
Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001).
Most patients want to include their families more than their physicians in advance care planning.
Uncertainty is widely believed to be a central feature in illness experiences. Moreover, communication is thought to be essential to the construction, management, and resolution of uncertainty. Not surprisingly, however, there are substantial variations in conceptions and analyses of this focal construct and its relation to communication. In this article, we first argue that understandings of the role of communication in health and illness can be improved substantially--thereby enhancing both theory development and practical applications of health communication theory--by recognizing and reconciling sources of variation in conceptions of uncertainty and by synthesizing various specific conceptions. We then review individual-psychological models. linguistic and discourse analyses, and sociocultural and historical perspectives on uncertainty in illness Following the review, we present a framework that synthesizes many conceptions of uncertainty We close with a discussion of 5 challenges and opportunities for research and application.
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.
Background: Most patients do not participate in advance care planning with physicians. Objective: To examine patients' preferences for involving their physicians and families in advance care planning. Design: Face-to-face interviews with randomly selected patients. Setting: Community-based dialysis units in one rural and one urban region. Participants: 400 hemodialysis patients. Measurements: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. Results: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). Conclusion: Most patients want to include their families more than their physicians in advance care planning.
In this thoughtful and important book, Jay Katz takes us on a journey through medical and legal history to establish convincingly one point— that medical and legal relationships and entitlements up to the 20th century have developed in a manner that has kept patients out of the process of decision in which the harms and benefits of therapeutic alternatives concerning them were weighed and balanced.In medicine, for centuries, such exclusion was justified on the basis of things such as the medical ignorance of patients, their intolerance of uncertainty, the need to maintain the patient's hope that things would improve, the simplicity that unilateral decision making gave to the doctor's life, the painfulness of discussing with patients dreaded events and hopeless prognoses, and the authority that silence in the medical relationship gave to physicians.In the law, too, the rights given to patients up to the mid-20th century were basically
Objective.
—To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.
Design.
—Survey.
Setting.
—Thirty-one senior citizen centers within Los Angeles County, California.
Respondents.
—A stratified quota sample of 200 subjects aged 65 years and older self-identified as being from each of four ethnic groups: European American, African American, Korean American, or Mexican American (N=800).
Main Outcome Measures and Results.
—Korean Americans (47%) and Mexican Americans (65%) were significantly less likely than European Americans (87%) and African Americans (88%) to believe that a patient should be told the diagnosis of metastatic cancer. Korean Americans (35%) and Mexican Americans (48%) were less likely than African Americans (63%) and European Americans (69%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% and 41% vs 60% and 65%). Instead, Korean Americans and Mexican Americans tended to believe that the family should make decisions about the use of life support. On stepwise multiple logistic regression, ethnicity was the primary factor related to attitudes toward truth telling and patient decision making.
Conclusions.
—Korean-American and Mexican-American subjects were more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the African-American and European-American subjects. This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.(JAMA. 1995;274:820-825)
Objective:
To identify factors predicting the accuracy of surrogate decision making in life support decisions.
Design:
Questionnaire.
Setting:
Urban Veterans Affairs hospital.
Patients and Design:
Fifty hospitalized patients and their chosen surrogates were given questionnaires describing life support modalities and four common medical scenarios in which life support would be contemplated. An additional 50 patients also completed the questionnaire. Patients gave their choices of life support in the different scenarios. Surrogates guessed the patients' answers (substituted judgment). Details of the patient-surrogate relationship were asked. Patients completed a depression inventory.
Main Outcome Measure:
Patient-surrogate agreement.
Main Results:
Surrogates correctly guessed patients' wishes about life support overall on 59.3% of the questions, not better than random chance (kappa=.09). The only predictor of accurate surrogate decision making was specific discussion between patient and surrogate about life support.
Secondary Results:
Patients had an overall low desire for life support (35%), and a majority favored euthanasia under some circumstances (62%). There was no relationship between depression score and desire for life support.
Conclusions:
Substituted judgment by surrogates is not more accurate than random chance. Discussion between patient and surrogate about life support correlated with more accurate substituted judgment.(Arch Intern Med. 1994;154:90-96)
Objectives. —To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.
Design. —A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their physicians randomized by specialty group to the intervention group (n=2652) or control group (n=2152).
Setting. —Five teaching hospitals in the United States.
Patients. —A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%.
Intervention. —Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability at 2 months. A specially trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication.
Results. —The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time. During the phase II intervention, patients experienced no improvement in patient-physician communication (eg, 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [Cl], 0.90 to 1.15), physicians' knowledge of their patients'preferences not to be resuscitated (adjusted ratio, 1.22; 95% Cl, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% Cl, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1.15; 95% Cl, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% Cl, 0.99 to 1.12).
Conclusions. —The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase II intervention failed to improve care or patient outcomes. Enhancing opportunities for more patient-physician communication, although advocated as the major method for improving patient outcomes, may be inadequate to change established practices. To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measures may be needed.(JAMA. 1995;274:1591-1598)
Physicians are legally and ethically required to obtain informed consent from patients prior to providing medical care. However, the chronically ill elderly may poorly understand the facts that are needed for them to make informed choices, and they also may wish to avoid discussing potentially discouraging information. Interviews of 142 elderly hemodialysis patients were conducted to determine whether informed consent for performing dialysis had been obtained and to explore potential causes of inadequate informed consent. As predicted, most patients lacked information needed to render fully informed consent. However, when we examined potential causes for the very low levels of knowledge reported by patients, we found that patients’ education level, cognitive capacity, and willingness to discuss medical contingencies were stronger predictors of informed consent than were the communicative practices of doctors. Neither doctors’ willingness to promptly disclose the need for dialysis nor their willingness to discuss forgoing dialysis were related to any of the patient characteristics. Results suggest that obtaining fully informed consent for chronically ill elderly requires both a modification of doctors’ communication practices and greater adaptation to the cognitive capacity, education, and communication practices of the patient.
This article synthesizes past studies of illness, stress, coping, and social support and offers a model of communicative support, based on problematic integration theory, that emphasizes two major dimensions of meaning in the breast cancer experience. The model suggests that supportive messages are designed to help the breast cancer patient manage both perceptions of the likelihood (e.g., uncertainty) of various illness experiences and evaluations of those experiences. Support messages are designed to facilitate coping by reducing, maintaining, or increasing the supportee's level of uncertainty; variations in message design are expected to be related to perceptions of the supportee's pre‐message uncertainty about and evaluation of the potential experience. These expectations were tested by asking breast cancer patients to formulate supportive messages in response to several hypothetical scenarios. The same patients were then asked to judge the likely junction of their messages. These judgments were assessed by means of loglinear analysis. The results generally support the model of social support suggested by problematic integration theory.
Background: Patients' loved ones often make end-of-life treatment decisions, but the accuracy of their substituted judgments and the factors associated with accuracy are poorly understood. Objective: To assess the accuracy of judgments made by surrogate decision makers; ascertain the beliefs, practices, and clinical and sociodemographic factors associated with accuracy of surrogates' decisions; assess the preferences of patients for life-sustaining treatments; and compare differences in accuracy across diagnoses. Design: Cross-sectional paired interviews. Setting: Outpatient practices of three university hospitals. Patients: 250 patients with terminal diagnoses of congestive heart failure, AIDS, amyotrophic lateral sclerosis, lung cancer, and chronic obstructive pulmonary disease (50 patient-surrogate pairs in each group) and 50 general medical patients and their surrogates. Measurements: The accuracy of surrogate predictions was measured by using scales based on 10 potential treatments in each of three hypothetical clinical scenarios. Results: Preferences varied according to mode of treatment and scenario. On average, surrogates made correct predictions in 66% of instances. Accuracy was better for the permanent coma scenario than for the scenarios of severe dementia or coma with a small chance of recovery (P < 0.001). In a binary log it model, the accuracy of substituted judgments was positively associated with the patient having spoken with the surrogate about end-of-life issues (odds ratio [OR], 1.9 [95% CI, 1.6 to 2.3]), the patient having private insurance (OR, 1.4 [Cl, 1.1 to 1.7]), the surrogate's level of education (OR, 1.5 [Cl, 1.2 to 1.9]), and the patient's level of education (OR, 1.7 [CI, 1.4 to 2.2]). Accuracy was negatively associated with the patient's belief that he or she would live longer than 10 years (OR, 0.6 [Cl, 0.5 to 0.7]), surrogate experience with life-sustaining treatment (OR, 0.4 [Cl, 0.3 to 0.5]), surrogate participation in religious services (OR, 0.67 [CI. 0.50 to 0.91]), and a diagnosis of heart failure (OR, 0.6 [Cl, 0.5 to 0.8]). Age, ethnicity, marital status, religion, and advance directives were not associated with accuracy. Conclusions: The accuracy of substituted judgments is associated with multiple clinically apparent patient and surrogate factors. This information can help clinicians identify conditions under which substituted judgments are likely to be accurate or inaccurate and can help target populations for education designed to improve the accuracy of surrogate decision making.
Communication in health and illness constitutes one of the most vital of human experiences. Because of this, the relatively new area of health communication studies has much promise to further our understanding of basic human communication processes. Three theoretical statements published in this issue and authored by Klingle, Geist and Gates, and Witte et al., provide a starting point for analyzing the potential of communication and health studies. Using a framework suggested by our own models of the problematic integration of probability and value judgments and the management of uncertainty, we offer a brief assessment of these theories. Each of the perspectives offers distinctive and potentially valuable contributions to the development of health communication theory.
Encouraging patients to execute advance directives is a worthy goal. Although such documents are certainly not perfect and may in many instances be difficult to interpret,1 it is usually much easier to determine and respect a patient's wishes when there is an advance directive than when the patient has left no indication of his or her wishes.2 The importance of advance directives seems to be growing. Nonetheless, there is a fundamental limitation to their usefulness: relatively few people are likely ever to execute them. Certainly, the results before the enactment of the Patient Self-Determination Act, which became effective last December, . . .
To see if an educational intervention directed at older outpatients would lead to increased use or discussion of advance directives and to characterize patients' reasons for not obtaining advance directives.
Randomized, controlled trial of an educational intervention versus usual care.
Outpatient geriatrics clinic of a university hospital.
One hundred and thirty-one non-demented patients over the age of 65 who did not have an advance directive documented in their record at the start of the study. Forty-eight patients were in the trial arm and 83 in the control.
All patients had their charts reexamined 6 months after enrollment to look for the presence of a living will, a durable power of attorney for health care, or a physician's note describing a discussion of advance directives. Trial patients were also re-interviewed to examine their reasons for not executing an advance directive.
Six months after the intervention, only seven of the 48 trial subjects (15%) had an advance directive or note describing discussion of advance directives in their charts compared to eight of the 83 controls (10%) (P greater than 0.05). When asked to give reasons for not obtaining an advance directive, many patients' responses pointed to procrastination as a significant barrier.
Promoting advance directive use is a complicated task. Barriers other than information and access to documents appear to be involved and need to be addressed in future efforts.
To test the efficacy of two intervention methods that aimed to increase the percentage of adult clinic patients who completed living wills and placed them on file with their physicians within a four-month period.
There were one control and two intervention groups. Surveys were separated by age and gender categories and randomly selected for the final sample.
The internal medicine outpatient clinic of a large tertiary hospital.
All patients who visited the clinic were asked whether they would be willing to fill out a survey. The final sample included 167 adult patients who comprised three study groups.
The first intervention relied solely on a booklet that described the Minnesota Living Will Act, general information concerning advance directives, and medical interventions that could be considered extraordinary if used for a patient in a terminal condition. The second intervention relied on both the booklet and repeated physician-initiated discussions with the patient about the probable value of a living will.
The booklet/physician intervention was found to be significantly more effective than either the booklet-only intervention or no intervention (p less than 0.05 and 0.01, respectively).
The physician intervention used in this population could be undertaken in any primary care clinic. Time spent in discussion before a crisis may be significantly shorter and qualitatively better than time spent in discussion with families who must make decisions during a crisis.
Physicians and patients share a common interest in clarifying and maximizing the powers and protection of advanced directives for future care in the event of patient incompetence. Although the complexity and unpredictability of health care circumstances make it impossible to guarantee complete control over therapeutic measures to be used when survival is in question, physicians should offer their patients the opportunity to reflect on their values and wishes and to express them explicitly. The ideal advanced directive should clearly state the author's intentions; contain clear documentation regarding authorship; be flexible, allowing family and caregivers to respond appropriately to changing circumstances; be available when needed; and be supported by legal powers that grant patients the right of enforcement and grant health care providers protection from liability. Advanced directives can be set as instruction directives or proxy directives, each form having advantages and disadvantages.
This paper offers a critique of the idea of 'uncertainty' in the sociology of medicine, particularly in the context of studies of medical education. The work of Renée Fox is used as the main example of the work against which this criticism is levelled. It is argued that the idea of 'training for uncertainty' has been over-emphasized in previous literature. The notion of 'training for certainty' is proposed as a corrective. Finally, however, it is argued that an adequate phenomenology of medical knowledge, education and practice must recognize 'certainty' and 'uncertainty' as two different 'attitudes', which may co-exist simultaneously, reflecting different practical and theoretical interests.
To assess 1) the health values and health ratings of seriously ill hospitalized patients, their surrogate decision makers, and their physicians; 2) the determinants of health values; and 3) whether health values change over time.
Prospective, longitudinal, multicenter study.
5 academic medical centers.
1438 seriously ill patients with at least one of nine diseases who had a projected overall 6-month mortality rate of 50%; their surrogates; and their physicians.
Time-tradeoff utilities (reflecting preferences for a shorter but healthy life) and health ratings.
At study day 3, patients had a mean time-tradeoff utility of 0.73 +/- 0.32 (median [25th, 75th percentile], 0.92 [0.63, 1.0]), indicating that they equated living 1 year in their current state of health with living 8.8 months in excellent health. However, scores varied widely; 34.8% of patients were unwilling to exchange any time in their current state of health for a shorter life in excellent health (utility, 1.0), and 9.0% were willing to live 2 weeks or less in excellent health rather than 1 year in their current state of health (utility, 0.04). Health rating scores averaged 57.8 +/- 24.0 (median [25th percentile, 75th percentile], 60 [50, 75]) on a scale of 0 (death) to 100 (perfect health). The patients' mean time-tradeoff score exceeded that of their paired surrogates (n = 1041) by 0.08 (P < 0.0001). Time-tradeoff scores were related to psychosocial well-being; health ratings; desire for resuscitation and extension of life rather than relief of pain and discomfort; degree of willingness to live with constant pain; and perceived prognosis for survival and independent functioning. Scores of surviving patients increased by an average of 0.06 after 2 months (P < 0.0001) and 0.08 after 6 months (P < 0.0001).
Health values of seriously ill patients vary widely, are higher than patients' surrogates believe, are related to few other preference and health status measures, and increase over time.
To describe treatment preferences of nursing home residents, concordance with decisions by self-selected proxies and to establish the relationship of sociodemographic and functional measures to decisions.
52 patient-proxy pairs at a Veterans Affairs nursing home.
Treatment preferences were elicited from residents and proxies regarding cardiopulmonary resuscitation, mechanical ventilation, and intensive care unit care. Hospitalization, intravenous antibiotics, intravenous fluid administration, and tube feeding were presented in three separate health scenarios. Concordance was determined for the entire interview and separately for each scenario. Treatment-seeking intensity and decision-making consistency were scored and used to explore associations with sociodemographic variables and function.
Subjects were predominantly male (97%) and non-Hispanic white (74%); average age was 70 +/- 12 years, with 4 +/- 2.9 diagnoses. Residents accepted 70% of all treatments. The proportion of subjects accepting interventions declined parallel to health status in each scenario. Only 7/52 (13%) subjects made inconsistent decisions. Resident treatment acceptance was inversely associated with GDS scores but not associated with any other sociodemographic or functional measure. Concordance with proxies was no greater than chance. Proxies' decisions were not systematically biased against resident preferences or influenced by patient characteristics.
Veterans desired most treatments, but adjusted preferences according to health status and were not inconsistent. Depressive symptoms should be addressed prior to advance directive selection. The patient remains the best source of information, but proxies' decisions exhibit no bias and are not affected by patient status.
To identify factors predicting the accuracy of surrogate decision making in life support decisions.
Questionnaire.
Urban Veterans Affairs hospital.
Fifty hospitalized patients and their chosen surrogates were given questionnaires describing life support modalities and four common medical scenarios in which life support would be contemplated. An additional 50 patients also completed the questionnaire. Patients gave their choices of life support in the different scenarios. Surrogates guessed the patients' answers (substituted judgment). Details of the patient-surrogate relationship were asked. Patients completed a depression inventory.
Surrogates correctly guessed patients' wishes about life support overall on 59.3% of the questions, not better than random chance (kappa = .09). The only predictor of accurate surrogate decision making was specific discussion between patient and surrogate about life support. SECONDARY RESULTS: Patients had an overall low desire for life support (35%), and a majority favored euthanasia under some circumstances (62%). There was no relationship between depression score and desire for life support.
Substituted judgment by surrogates is not more accurate than random chance. Discussion between patient and surrogate about life support correlated with more accurate substituted judgment.
To review clinical interventions designed to change care at the end of life.
Published results of clinical trials identified by MEDLINE searches, review of abstracts from meetings, and selected bibliographies.
Studies were included if data were presented on a clinical intervention designed to change medical care at the end of life. Studies done in nonclinical settings or outside the United States were excluded.
Interventions were classified as targeting patients, physicians, or both and were analyzed by their effect on four common clinical goals: increasing use of patient preferences, decreasing pain and suffering, reducing use of life-sustaining treatments, and reducing costs. Positive and negative trial results were compared for differences in intervention, target group, and strength of study methods.
Educational interventions usually increased expression of patient treatment preferences. Success rates were higher when more severely ill patients were targeted and when written materials were combined with repeated discussions in clinical encounters. Educational interventions with physicians led to increased use of patient preferences, but sophisticated educational techniques were needed to motivate physicians to change their behavior. Three studies provided limited evidence that physician education reduced the use of life-sustaining treatments. No clinical intervention had an effect on pain, suffering, or cost of medical care.
To change care at the end of life, intensive educational interventions for physicians and broad institutional programs seem more promising than advance directives. Future innovations should seek to change physician practices, reduce costs, and improve patient-centered outcomes, such as pain control and satisfaction.
Uncertainty and communication Progress in com-munication science Ethnicity and attitudes toward patient autonomy
- C R Berger
- W B Gudykunst
- Ablex
- L J Blackhall
- S T Murphy
- G Frank
- V Michel
- S Azen
Berger, C. R., & Gudykunst, W. B. (1991). Uncertainty and communication. In B. Dervin (Ed.), Progress in com-munication science, Volume X (pp. 21-66). Norwood, NJ: Ablex. Blackhall, L. J., Murphy, S. T., Frank, G., Michel, V., & Azen, S. (1995). Ethnicity and attitudes toward patient autonomy. Journal of the American Medical Association, 274, 820-825.
Managing uncertainty in illness explanation: An application of problematic integration theory Explaining illness: Theory, research, and strategies (pp. 41-67) The many meanings of "uncertainty" in illness: Toward a sys-tematic accounting
- P Atkinson
- A S Babrow
- S C Hines
- C Kasch
Atkinson, P. (1995). Medical talk and medical work London: Sage. Babrow, A. S., Hines, S. C., & Kasch, C. (2000). Managing uncertainty in illness explanation: An application of problematic integration theory. In B. Whaley (Ed.), Explaining illness: Theory, research, and strategies (pp. 41-67). New York: Lawrence Erlbaum. Babrow, A. S., Kasch, C. R., & Ford, L. A. (1998). The many meanings of "uncertainty" in illness: Toward a sys-tematic accounting. Health Communication, 10, 1-24.
Training for uncertainty The student-phy-sician
- R Fox
Fox, R. (1957). Training for uncertainty. In R. K. Merton, G. G. Reader, & P. L Kendall (Eds.), The student-phy-sician (pp. 207-241). Cambridge, MA: Harvard University Press.
Facing death with a plan Washington Post [online] Available Good care of the dying patient
- D Colburn
Colburn, D. (1998, Oct. 27). Facing death with a plan. Washington Post [online]. Available: http://www.aging-withdignity.org/awd/wpost.html. Council Report. (1996). Good care of the dying patient. Journal of the American Medical Association, 275, 474-478.
Planning for uncertainty: A guide to living wills and other advance directives for health care
- D J Doukas
- W Reichel
Doukas, D. J., & Reichel, W. (1993). Planning for uncertainty: A guide to living wills and other advance directives for health care. Baltimore, MD: Johns Hopkins Press.
The troubled dream of life State statutes governing surrogate decision making
- D Callahan
Callahan, D. (1993). The troubled dream of life. New York: Simon & Schuster. Choice in Dying. (1997). State statutes governing surrogate decision making. New York: Choice in Dying.