Daniel P. Sulmasy

Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference

A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17-18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.

The Accuracy of Substituted Judgments in Patients with Terminal Diagnoses

When patients face end-of-life decisions and are unable to speak for themselves, loved ones are often asked to make substituted judgments. Ethicists have argued that this is an important way of respecting patient autonomy [1, 2], but preliminary studies indicate that substituted judgments may not be very accurate [3-11]. This concern has led some observers to question the usefulness of asking for substituted judgments [8, 12]. If the concept of substituted judgment is to remain clinically useful, health care professionals need a better sense of the circumstances under which substituted judgments made by surrogates are accurate or inaccurate. Such data may alert clinicians to instances in which patients are at risk for having their wishes misrepresented and may aid in the design of education campaigns to improve the accuracy of substituted judgments. Little is known about the factors associated with accurate substituted judgments, especially among patients with terminal diagnoses [8, 11]. In a pilot study of 50 general medical patients [13], we found that accuracy was positively associated with discussions between patients and surrogates and negatively associated with religiosity. Building on this experience, we studied 250 terminally ill patients and their legal surrogates and a comparison group of 50 general medical patients and their surrogates. Our objectives were to 1) assess the accuracy of the substituted judgments made by the surrogates; 2) ascertain the beliefs, practices, and clinical and sociodemographic factors associated with accuracy; 3) assess the preferences of patients for life-sustaining treatments; and 4) compare differences in accuracy across diagnoses. Methods Patients Between November 1993 and February 1996, patients were recruited from the outpatient practices of Johns Hopkins Hospital and the Hopkins Bayview Medical Center, Baltimore, Maryland, and Georgetown University Medical Center, Washington, D.C. Eligible patients were older than 17 years of age, spoke English, and had one of the following conditions known to be associated with a less than 50% chance of surviving for 2 years: New York Heart Association class III or IV congestive heart failure with no possibility of transplantation [14], advanced HIV infection according to the Centers for Disease Control and Prevention case definition for AIDS (before the use of protease inhibitors) [15], amyotrophic lateral sclerosis with respiratory compromise [16], unresectable non-small-cell lung cancer [17], or oxygen-dependent chronic obstructive pulmonary disease with dyspnea at rest [18, 19]. Treating physicians were asked to exclude patients whom they thought they were likely to live longer than 2 years and patients who were cognitively incapable of participating. The comparison group comprised general medical patients who were older than 64 years of age, spoke English, and were expected to live longer than 2 years. To have a power of 0.80 to detect a 15% difference between patient preferences and surrogate predictions at = 0.05, we needed 263 patient-surrogate pairs. Rounding up to 300 gave a power of 0.75 to detect a 25% difference in agreement between diagnostic groupings at = 0.05. Surrogates were chosen according to Marylands legal hierarchy of surrogates for incapacitated patients: durable power of attorney, guardian, spouse, adult child, parent, sibling, other relative, or friend [20]. For uniformity, surrogates of patients recruited at Georgetown University Medical Center were also chosen according to the Maryland hierarchy. Attending physicians were contacted 2 weeks before scheduled patient visits. Patients were initially informed of the general nature of the study and asked to supply the phone number of the surrogate who was highest in Marylands legal hierarchy. At the time of the appointment, details of the study were described and informed consent was obtained. Surrogates were interviewed within 48 hours before or after the patient interview. Patients and surrogates were asked not to speak with each other about the interviews until both interviews were completed. Informed consent was obtained from all participants. The study was approved by the institutional review boards of the Johns Hopkins Medical Institutions and Georgetown University Medical Center. Interview Schedule Structured interviews consisted of closed-ended questions about sociodemographic factors, previous discussions about end-of-life decisions, advance directives, and past experiences. Patients were asked about their treatment preferences, and surrogates were asked to predict patient preferences. Sociodemographic information included age, sex, ethnic group, exposure category for HIV infection, level of education, socioeconomic factors, insurance status, and religious beliefs and practices. We elicited preferences for various medical interventions in the setting of three hypothetical clinical scenarios that would render patients unable to make decisions for themselves: permanent coma, coma with a small chance of recovery (the small chance scenario), and severe dementia (Table 1). For each scenario, the patient was asked to report his or her preferences for intensive care, intubation, cardiopulmonary resuscitation, feeding tube placement, nasotracheal suction, surgery, hemodialysis, esophagogastroduodenoscopy, phlebotomy, and chest roentgenography. All scenarios and interventions were described briefly and simply to ensure understanding. For example, the feeding tube question was worded, Would you want to be fed by a feeding tube (that is, a tube put through your nose or through the skin over your stomach)? Table 1. Clinical Scenarios Requests for a limited trial of an intervention were interpreted as yes responses. Patients and surrogates were urged to give their best judgment. Unsure responses were recoded as yes responses because they would be clinically interpreted that way. The interview schedules had been previously developed and tested for reliability [13] and were based on the Medical Directive of Emanuel and Emanuel [21]. Slight modifications were made for our protocol; the revised instruments showed high internal consistency, with Kuder-Richardson statistics of 0.97 for the permanent coma scenario, 0.94 for the small chance scenario, and 0.93 for the severe dementia scenario. The complete set of instruments is available from the authors on request. Surrogate Accuracy in Matching Patient Preferences Scale Scores We constructed a Surrogate Accuracy in Matching Patient Preferences Scale (SAMPPS) for each of the three scenarios (SAMPPS-1 for permanent coma, SAMPPS-2 for small chance, and SAMPPS-3 for severe dementia). This scale assigns a score of 1 when the surrogates prediction correctly matches the patients preference for each scenario-treatment pair. Mismatches are assigned a score of 0. The sum of the correct answers constitutes the SAMPPS score. For each of the three scenarios, a perfect score is 10 and a complete mismatch has a score of 0. Statistical Analysis Categorical variables were analyzed by using the chi-square test or the Fisher exact test. Two-tailed t-tests were used for paired continuous variables. Analysis of variance was used to compare continuous variables across multiple groups. Differences between surrogate and patient demographic characteristics were examined by using the McNemar test for paired comparisons. The McNemar test was also used to assess any pattern in mismatches between patient and surrogate preferences. Differences in patient preferences for treatment according to modality or scenario were assessed by using the Cochran Q test. Although scores have often been reported in similar studies, we do not report them because of concern about the appropriateness of as a test of surrogate accuracy [11, 22], and the paradox of [23]. We presented elsewhere an alternative to chi for measuring surrogate accuracy [24]. Factors Associated with the Accuracy of Substituted Judgments A skewed distribution was found for SAMPPS scores. The Friedman two-way analysis of variance was used to compare SAMPPS scores across scenarios, and the Kruskal-Wallis one-way analysis of variance was used to compare SAMPPS-1 scores across diagnoses. A binary logit model [25] was constructed using the 10 binary items (correct/incorrect) per patient-surrogate pair of the SAMPPS-1 score. Independent variables were screened for association with SAMPPS-1 score by using the Spearman rank correlation and Kruskal-Wallis tests, as appropriate. Variables that did not contribute significantly to the multivariate model were eliminated in a stepwise manner. When diagnostic categories were stratified by age ( 65 years or <65 years), the log odds differed significantly by age group for patients with amyotrophic lateral sclerosis, but no such interaction was found between education and insurance. Model diagnostics to identify influential observations were examined [26], revealing 9 outliers that were subsequently removed from the final model. Thus, the final model reports on only 291 patient-surrogate pairs. The model was validated by using the independent variables found to be significant in the SAMPPS-1 model to predict the SAMPPS-2 and SAMPPS-3 scores. Results Participants Interviews of both patient and surrogate were completed for 75% of pairs that met study inclusion criteria. Of interviews that were not completed, 51% were not completed because of patient refusal; 25% were not completed because of patient refusal to allow surrogate contact; 15% were not completed because of surrogate refusal; and 9% were not completed for other reasons, chiefly our inability to arrange for a surrogate interview within 48 hours of the patient interview. Compared with participants, nonparticipants were older (68 and 60 years of age; P < 0.001), more likely to be female (65% and 39%; P < 0.001), more likely to receive Medicare (24% and 10%; P < 0.001), and more likely to be in the chr

What should men know about prostate-specific antigen screening before giving informed consent?

PURPOSE Since prostate-specific antigen (PSA) screening is controversial, some authorities recommend that patients give informed consent before testing. We identified and compared what facts experts and patients thought men should know. SUBJECTS AND METHODS We recruited a Delphi panel of national experts (6 urologists and 6 non-urologists) and conducted 6 focus groups of couples (48 subjects) with 24 screened and unscreened men from a university hospital. We ranked key facts that experts and couples thought men ought to know before consenting to PSA screening and conducted a multidisciplinary focus group to help interpret the findings. RESULTS All participants would disclose that false positive and false negative results can occur and that it is not known whether PSA screening reduces prostate cancer mortality. The 12 experts would disclose the uncertain benefits of treating early, localized prostate cancer. All 24 couples would disclose that the PSA test is a blood test and that patients may worry about results. The 6 urologists would disclose that prostate cancer is often incurable when symptoms appear; the 6 non-urologists, that it can be asymptomatic. The 12 couples with screened men would disclose that the PSA test can detect cancer sooner than the digital rectal examination; the 12 couples with unscreened men, that PSA testing is controversial. CONCLUSIONS Physicians and patients agree upon some facts that men should know about PSA screening before giving informed consent. However, physicians fail to emphasize other facts that patients find important. Physicians may differ by expertise; patients, by experience. Our findings provide content for informed consent for PSA screening, and our method may be useful for other controversial tests.

The correlation between patient characteristics and expectations of benefit from phase I clinical trials

Patients in Phase I clinical trials sometimes report high expectations regarding the benefit of treatment. The authors examined a range of patient characteristics to determine which factors were associated with greater expectations of benefit from Phase I trials.

Cancer patient preferences for quality and length of life

Optimal patient decision making requires integration of patient values, goals, and preferences with information received from the physician. In the case of a life‐threatening illness such as cancer, the weights placed on quality of life (QOL) and length of life (LOL) represent critical values. The objective of the current study was to describe cancer patient values regarding QOL and LOL and explore associations with communication preferences.

What is conscience and why is respect for it so important

The literature on conscience in medicine has paid little attention to what is meant by the word ‘conscience.’ This article distinguishes between retrospective and prospective conscience, distinguishes synderesis from conscience, and argues against intuitionist views of conscience. Conscience is defined as having two interrelated parts: (1) a commitment to morality itself; to acting and choosing morally according to the best of one’s ability, and (2) the activity of judging that an act one has done or about which one is deliberating would violate that commitment. Tolerance is defined as mutual respect for conscience. A set of boundary conditions for justifiable respect for conscientious objection in medicine is proposed.

Substituted Interests and Best Judgments: An Integrated Model of Surrogate Decision Making

AKING DECISIONS ON BEHALF OF PATIENTS WITHoutdecision-makingcapacityremainschallenging, especially at the end of life. Under the currentUSmodel,formalwrittenororaldirectives expressing patient wishes for future care are preferred. Lackingthat,surrogatesareinstructedtoprovidesubstitutedjudgments, choosing what the patient would have chosen. If the patientneverhadcapacityorthepatient’spreferencesareunknown, a decision should be made in the patient’s best interests. This hierarchical model of separate standards, however, does not always reflect clinical reality or the interests of patients and families. In this commentary, we propose an alternative approach: the substituted interests model. Decision making under the substituted interests model would be individualized and patient-centered and combineuniversalprincipleswithempiricalevidenceaboutwhat individualsvalueandhowtheymakedecisions.Thismodel emphasizes authenticity (ie, a decision true to who the person really is) rather than the autonomy the patient cannot exercise, 1 asking surrogates to provide knowledge of patients’ authentic values and interests (“substituted interests”) rather than guessing what the patient would have decided. A “best judgment” about what decision advances the good of each patient as a unique individual follows. Substituted Interests Model Thesubstitutedinterestsmodelintegratesthecurrentlyseparate standards into a contextualized process, unique to each patient, yet universal in its ethic. Rather than interpreting a text or making a substituted judgment about what the patient might have wanted in imperfectly foreseen circumstances, the surrogate is asked to apply the patient’s authentic values and real interests, including the patient’s known preferences. The key question under best interests is, “What

How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study

OBJECTIVES: To determine the role terminally ill patients would opt to have their loved ones and physicians play in healthcare decisions should they lose decision‐making capacity and how this changes over time.

Is medicine a spiritual practice

Spirituality and medicine have a long history in common. For much of that history for many persons and cultures today, the rupture between medicine and spirituality that characterizes Western medicine at the brink of the 21st century is a distinct anomaly. Spirituality is defined by a persons relationship with the transcendent. Only persons are capable of such relationships. The transcendent can be experienced in and through the practice of medicine, which essentially involves personal relationships with patients and always raises transcendent questions for patients and practitioners. Physicians who wish to deepen their own spiritual lives can begin to do so by intensifying their personal commitments to their own spiritual beliefs and practices, and by beginning to talk with each other about spiritual issues that arise in the practice of medicine. This will better prepare them to meet the spiritual needs of their patients.

Strategies to promote the use of advance directives in a residency outpatient practice

OBJECTIVE: To evaluate patient education and resident education strategies to promote advance directives in the outpatient setting, and to assess barriers to implementation.DESIGN: Controlled clinical trial.SETTING: The internal medicine residents’ practice of an urban, university medical center.PATIENTS/PARTICIPANTS: Medical residents and 250 patients seen at least twice in the 3 months prior to the study.INTERVENTIONS: We randomized practice days: one to patient education, one to resident education, and three controls. Resident education consisted of a lecture, a videotape of a model advance directives discussion, and videotaping of an actual discussion by each resident, followed by individual review. Patient education consisted of distributing pamphlets in the waiting room and offering all patients an opportunity to discuss advance directives.MEASUREMENTS AND MAIN RESULTS: We interviewed 187 of these patients (response rate 75%) and surveyed 62 residents (response rate 70%). After 18 months, there were no significant differences in the number of advance directives in charts among the three groups. Documented advance directives discussions with patients in the resident education group increased from 3% to 17% (p<.001), more than those in the patient education (5%) or control group (10%, p=.04). Residents in the resident education group were more likely to report discussing advance directives than those in the patient education or control groups (p=.05). Lack of time (95%) and lack of continuity (76%) were the most frequently cited barriers. In multivariate logistic regression, nonwhite race and non-U.S. birth were negatively associated with patient interest in advance directives. Patient race and birthplace were not associated with actual discussions of advance directives.CONCLUSIONS: Even with intensive efforts to educate outpatients and residents about advance directives, important barriers remain, raising questions about how best to promote advance directives among outpatients.