Peter B. Terry

An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses

Executive Summary Introduction Methods Goals, Timing, and Settings for Palliative Care Decision-making Process Advance Directives Care Planning and Delivery Hospice Care Alternative End-of-Life Decisions Symptom Management Dyspnea Management Pain Management Management of Psychological and Spiritual Distress and Suffering Withdrawal of Mechanical Ventilation Process of Decision Making Process of Withdrawing Mechanical Ventilation Bereavement Care Barriers to Palliative Care Program Development, Education, Training, and Research in Palliative Care

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

Collateral Ventilation in Man

To determine whether collateral ventilation (defined as the ventilation of alveolar structures through passages or channels that bypass the normal airways) changes with age or emphysema, we compared the mechanics of collateral ventilation in seven young normal subjects, three old normal subjects and five patients with emphysema. In supine normal subjects at the end of a quiet expiration, resistance to airflow was greater through collateral channels than through bronchi and bronchioles. In emphysema, airways resistance could exceed collateral resistance, causing air to flow preferentially through collateral pathways. We conclude that high collateral resistance minimizes collateral airflow in supine normal subjects. When peripheral airways become obstructed or obliterated in emphysema, collateral channels may provide for more even distribution of ventilation.

Pulmonary Arteriovenous Malformations: Physiologic Observations and Results of Therapeutic Balloon Embolization

Pulmonary arteriovenous malformations can result in severe hypoxemia and dyspnea. We measured pulmonary function, arterial blood gases, and hemodynamics in 10 patients with such malformations. Pulmonary-function tests were normal, but hypoxemia was associated with chronic hyperventilation at rest (mean, 12 liters per minute; mean carbon dioxide tension, 28 mm Hg). With exercise, ventilation increased more than expected for the level of carbon dioxide production. Balloon embolization of 58 of the 71 visible vascular malformations in the 10 patients resulted in an increase in arterial oxygen tension (43 vs. 64 mm Hg; P less than 0.001) and hemoglobin saturation (79 vs. 92 per cent; P less than 0.001). Nine patients had improved exercise tolerance. Forty-eight to 72 hours after correction of the hypoxemia, resting ventilation had decreased but was still above normal (mean, 9.3 liters per minutes; mean carbon dioxide tension, 29 mm Hg). We conclude that ventilatory responses in these patients are similar to those of people from sea-level areas who are acclimated to high altitudes and that dyspnea is due to inappropriately high levels of ventilation for a given workload under hypoxic conditions.

An epistaxis severity score for hereditary hemorrhagic telangiectasia.

Hereditary hemorrhagic telangiectasia (HHT)‐related epistaxis leads to alterations in social functioning and quality of life. Although more than 95% experience epistaxis, there is considerable variability of severity. Because no standardized method exists to measure epistaxis severity, the purpose of this study was to determine factors associated with patient‐reported severity to develop a severity score.

Transbronchial needle aspiration for diagnosis of lung cancer.

Thirty-two consecutive patients with mediastinal lesions suggestive of bronchogenic carcinoma underwent transbronchial needle aspiration. Eighteen of 20 patients (90 percent) with proved bronchogenic carcinoma had malignant cytology specimens or tissue fragments. Of 12 patients with normal cytology specimens, six were subsequently proved to have nonneoplastic disease. Transbronchial needle aspiration appears to offer a sensitive and specific alternative to more invasive surgical techniques used in the diagnosis of malignancies with mediastinal involvement.

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.

Flexible Transbronchial Needle Aspiration for the Diagnosis of Sarcoidosis

To determine the value of transbronchial needle aspiration biopsy in the diagnosis of sarcoidosis, we reviewed a 1-year experience of consecutive patients with sarcoidosis presenting with hilar and/or paratracheal adenopathy. The sensitivity of transbronchial needle aspiration biopsy in obtaining specimens of noncaseating granulomas was 90%. This yield exceeds that of most published reports of transbronchial lung biopsy and bronchial mucosal biopsy and suggests that transbronchial needle aspiration biopsy may be a valuable diagnostic tool in the evaluation of these forms of sarcoidosis.

Pulmonary consequences of aspiration

Aspiration can lead to serious pulmonary disease and occasionally death. Substances aspirated commonly include bacteria or gastric contents or both, but may be as unusual as diesel oil or a variety of foreign bodies. Pulmonary symptoms range from a subtle cough, wheezing, or hoarseness to severe dyspnea or asphyxiation. We discuss the mechanism of pulmonary disease caused by aspiration as well as the appropriate treatment.

Long-term effects of ethics education on the quality of care for patients who have do-not-resuscitate orders

AbstractObjective: To assess the long-term clinical impact of a broad-based ethics education program for medical houseofficers with specific emphasis on appropriate care for patients who have do-not-resuscitate (DNR) orders. Design: Prospective, with an initial randomized phase. Setting: The medical service of a university teaching hospital. Participants: Medical houseofficers and their inpatients. Interventions: A pilot program in 1988, and a full program with a two-year curricular cycle from 1989 to 1991. Measurements and main results: The authors measured compliance with specific standards of care by reviewing charts of patients who had DNR orders at baseline (n=39, 1988), after the pilot phase (n=57, 1989), and at the end of the first curricular cycle (n=56, 1991), noticing who wrote the DNR order, whether the reasons for the order and appropriate consent were documented, and whether there was documented attention to any of 11 concurrent care concerns (CCCs), such as spiritual needs, the appropriateness of tube feedings or pressors, and adjustment of analgesic dose. The percentage of DNR orders written by houseofficers increased from 26% in 1988 to 67% in 1991 (p<0.01). The percentage of charts documenting the rationale and consent for the DNR order was consistently high. The percentage of charts documenting attention to any CCC increased from 68% in 1988 to 86% in 1991 (p<0.01). The mean number of CCCs addressed per DNR order increased from 1.34 in 1988 to 2.14 in 1991. The mean number of CCCs addressed per DNR order for patients who had AIDS increased from 0.89 in 1988 to 2.25 in 1991 (p=0.03). Conclusions: The quality of care for patients who had DNR orders, both overall and for those who had AIDS, improved over long-term observation in the setting of an ethics education program for medical houseofficers. The results suggest that ethics education may alter physician practices and improve patient care.