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Evaluation of an ethics consultation service: Patient and family perspective
Evaluation of an Ethics Consultation Service: Patient and Family Perspective Robert D. Orr, MD, Kelly R. Morton, Ph.D., Dennis M. deLeon, MD, Juan C. Fals, MD, Loma Linda, California
PURPOSE: The purpose of this study was to determine whether patients and their families found ethics consultations to be helpful and whether they were satisfied with the treatment decisions that were made in those cases where ethics consultation was requested. METHODS: Interviews were conducted with each patient (or surrogate) concerning whom an ethics consultation had been provided during a 1-year period at Loma Linda University Medical Center, excepting those who met exclusion criteria. The interview was done by telephone a few weeks after hospital discharge. It included multiple choice and open-ended questions. A content analysis was done on the solicited and spontaneous comments. RESULTS: Eighty-six ethics consultations were provided and interviews were completed for 56 of them (65%). Fifty-seven percent of interviewees found the ethics consultation to have been helpful, and only 4% found them to have been detrimental. Interviewees were more likely to have found the consultation helpful when they perceived that it had resulted in a significant change in treatment, and were less likely to have found it helpful when the patients were more seriously ill. In addition, 77% were satisfied with the treatment decisions made, and 11% showed some degree of dissatisfaction. CONCLUSIONS: Patients and families found ethics consultation provided by clinical ethicists at Loma Linda University Medical Center to be helpful in a majority of instances, and rarely found them detrimental. Based on an analysis of their comments, we believe ethics consultations were perceived as helpful in 7 ways: increased clinical clarity, increased moral or legal clarity, motivation to do what they believe is right, facilitation of the process of decision-making, implementation of a decision, interpretation of
From Loma Linda University,Loma Linda, California. Requestsfor reprints should be addressedto Robert D. Orr, MD, Director of Clinical Ethics, Loma Linda UniversityMedical Center, 11340 Mountain View--Suite C, Loma Linda, CA 92354. Manuscript receivedOctober 17, 1995 and accepted in revised form April 26, 1996.
©1996 by Excerpta Medica, Inc. All rights reserved.
technical language, and consolation and support. Am J Med. 1996;101:135-141. linical ethics consultations are a relatively new service, having b e c o m e available to medical professionals, patients, and families only in the past decade. There are no recognized outcome measures to determine the efficacy of ethics consultations. A few empiric studies have demonstrated that physicians place a high value on the services provided by ethics consultants, 1-4 demonstrating that physicians found ethics consultations very helpful in clarifying ethical issues, educating the healthcare team, increasing confidence in decisions, and patient management. No reports published have evaluated ethics consultations from the perspective of patients or their families. 5 In editorial comment, Tulsky and Lo 6 criticized this lack of patient or family perspective in ethics consultation evaluations. They also noted that the evaluations to date had only examined whether ethics consultations were helpfifl or not helpful; the possibility of adverse effects of consultations had not been investigated. This study attempts to evaluate clinical ethics consultations from a patient/family perspective by determining whether patients and families find ethics consultations helpful, whether consultations help them arrive at treatment decisions, and whether they are ultimately satisfied with the decision made. We also studied patient demographics and other characteristics to try to identify factors that influence the patient/family perspective on the consultation process or on their satisfaction with the clinical decision.
C
METHODS Following approval by the Loma Linda University Institutional Review Board, a prospective study of patient and family perspective of ethics consultation was undertaken for consults provided between February 1, 1994 and January 31, 1995 by the three clinical ethicists of the Ethics Consultation Service at Loma Linda University Medical Center, a 625 bed tertiary care teaching hospital, and Loma Linda University Community Medical Center, a 120 bed primary care facility. The Ethics Consultation Service has been in operation since 1990 and its methods have been previously described, a It has provided an average of 84 ethics consultations per year since 1991, 0002-9343/96/$15.00 PII S0002-9343(96)00115-5
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TABLE I Patient Characteristics (n = 56) No. (%)
No. (%)
Sex:
Female Male
33 (59) 23 (41)
Religion:
Protestant Catholic Jewish Other None Unknown
22 (39) 10 (18) 1 (2) 9 (16) 4 (7) 10 (18)
Illness Severity:
Severe Serious Moderate Mild Healthy
24 (43) 22 (39) 5 (9) 1 (2) 4 (7)
Decision-Making Capacity:
Had DMC Borderline DMC No DMC
12 (21) 7 (13) 37 (66)
responding to requests from any m e m b e r of the healthcare team or from patients or families. Our research instrument was developed from a pilot study done in 1993 during which 15 patients and family m e m b e r s were asked a series of open-ended questions about the ethics consultation process and their a s s e s s m e n t of it. From a content analysis of their responses, we developed a structured interview consisting of 16 multiple-choice questions and 5 follow-up open-ended questions. The questionnaire is available from the authors. At the time of each consultation during the study period, the ethicist noted whether the patient would be able to answer evaluation questions or, if not, w h o would be an appropriate surrogate for the patient. In addition, the ethicist categorized both the ethical issues identified and his or her r e c o m m e n d a t i o n s using a new t a x o n o m y for ethics consultations prop o s e d by the authors 7 which identifies 7 types of ethical issues and 5 types of recommendations. Stratification by ethical issue allows identification of those cases where there was conflict from those where no conflict was apparent. This t a x o n o m y also allows differentiation of cases where the r e c o m m e n dations are primarily content-oriented (eg, articulation of ethical standards) from those which are primarily process-oriented (eg, facilitation of conflict resolution). This t a x o n o m y is also available from the authors. At the time of discharge, the consultant reviewed each consultation for exclusion criteria, which were (1) patients without decision-making capacity w h o had no surrogate, (2) patients without decision-making capacity where the ethics consultant had s p o k e n 136
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Age:
0-18 years 19-40 years 41-65 years >65 years
10 (18) 11 (20) 18 (32) 17 (30)
Race:
White Mexican-American African-American Asian-American
35 (63) 11 (20) 5 (9) 5 (9)
Survival:
Died in hospital Survived to discharge Died shortly after Alive at interview
23 (41) 33 (59) 9 (16) 24 (43)
only with the professional t e a m and had no contact with the family, and (3) cases with potential liability issues, as assessed by the consultant. Approximately one month after discharge a letter explaining the study was sent by the Director of Clinical Ethics to the patient or identified surrogate in all cases that were not excluded. A research assistant subsequently telephoned the addressee and conducted the interview after obtaining verbal consent. Interviews lasted 10 to 20 minutes. A content analysis was done on the verbatim responses to the open-ended questions in an a t t e m p t to categorize the ways in which patients or family m e m b e r s found ethics consultations to be helpful or detrimental.
RESULTS Clinical ethics consultations w e r e completed for 86 patients during the 12-month study period. No att e m p t was m a d e to interview the patient or family in 11 instances; 5 b e c a u s e the consultant had no contact with the family during the consultation and the patient w a s unable to participate in an interview, 3 because of concern about potential professional liability (family angry a b o u t initial e m e r g e n c y r o o m treatment; brain damage in a neonate from hypernatremia; hypoxic brain damage in a child during e m e r g e n c y intubation), 2 b e c a u s e there was no identifiable surrogate, and 1 because the patient was an abused child w h o s e parents w e r e in jail at the time of the survey. In 13 instances, the patient or surrogate could not be located. Contact was m a d e with 62 patients or surrogates, 6 of w h o m declined to participate, so that 56 interviews were completed.
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Patient characteristics are r e c o r d e d in T a b l e I. Severity of illness was assessed using a modification of a classification offered by Fiser. a Interviews w e r e conducted with 7 patients, 12 parents, 12 spouses, 15 adult sons or daughters, 4 siblings, 1 other family m e m b e r , and 5 friends of patients (including legal guardian, involved neighbor for socially isolated patient, e t c ) . Assessment of Ethics Consultation The interviewees were a s k e d if the ethics consultation had b e e n helpful to the patient's family, using a 5-point Likert scale (1 = very detrimental, 2 = s o m e w h a t detrimental, 3 = neither helpful nor detrimental, 4 = s o m e w h a t helpful, and 5 = very helpful). Responses to this question can be found in T a b l e II. Thirty-two r e s p o n d e n t s (57%) found the ethics consultation to offer s o m e help. They w e r e also asked, "Was the ethics consultation helpful or detrimental to the patient?" Thirty-two (57%) said that it had b e e n neither helpful nor detrimental, and 15 (27%) w e r e unable to a n s w e r the question. The intent of the question m a y not have b e e n clear to s o m e of the interviewees since several c o m m e n t e d voluntarily, "How could it have helped? The patient w a s unconscious!" or, "The patient died!" When asked if the ethics consultation had resulted in a change in t r e a t m e n t plans for the patient, 17 (30%) did not know, 21 (38%) said it had resulted in little or no change, 7 (13%) thought it had resulted in s o m e change, and only 11 (20%) felt that it had resulted in a m a j o r change in treatment. Pearson correlation coefficients w e r e used to determine the linear relationships b e t w e e n helpfulness of ethics consultation and other variables, including those a s s e s s e d by the consultant (decision-making capacity, severity of illness, survival to discharge, time lapse f r o m discharge to interview) and res p o n s e s of the interviewees (satisfaction with medical decisions, a m o u n t of change in t r e a t m e n t brought a b o u t by the consultation). Only 2 correlations were significant. Severity of illness was negatively correlated with helpfulness to the patient ( r = -0.50; p < 0.05); w h e n patients were sicker, the interviewee felt the consult w a s less helpful to the patients. There was a positive correlation b e t w e e n the a m o u n t of t r e a t m e n t change perceived to have resuited f r o m the ethics consultation and the degree of helpfulness to the family ( r = 0.35;.p < 0.05). Ethics Consultations P e r c e i v e d as Detrimental The 2 cases in which the interviewee felt that the ethics consultation had b e e n detrimental to the family w e r e reviewed. In one, a 70-year-old w o m a n suffered a devastating intraoperative c e r e b r o v a s c u l a r accident and w a s still unconscious 14 days after the
TABLE II Was the Ethics Consultation Helpful or Detrimental to the Family? Response Number Percent 5 = Very helpful 4 = Somewhat helpful 3 = Neither helpful nor detrimental 2 = Somewhat detrimental 1 = Very detrimental No response
23 9 21 0 2 1
Total
56
41 16 38 0 4 2
event. Consultation was requested b e c a u s e her son was unwilling to discuss the surgeon's r e c o m m e n dation for withdrawal of treatment. The surgeon told him she w a s unstable and would likely not survive. When the consultant mentioned this p o o r prognosis to her son, he was visibly s h a k e n and said that he did not realize she w a s so critically ill. He agreed to withdraw the ventilator, but she survived and w a s later discharged to a nursing home. She was slightly improved at the time of the interview 2 months later. During the interview, the son c o m m e n t e d that the ethics consultant should not have b e e n so pessimistic a b o u t the prognosis. In the other case, a 65-year-old retarded ( b u t previously quite functional) m a n had b e e n treated aggressively for 2 w e e k s for a systemic fungal infection. His family requested hospice care and the consult was requested to discuss the appropriateness of withdrawal of antibiotics. His physicians believed there w a s a reasonable chance that the patient could survive and return to his baseline level of functioning with continued aggressive treatment. In spite of several attempts, the consultant w a s unable to reach any family m e m b e r s for discussion. He felt it was ethically permissible to pursue a time-limited trial of therapy and he encouraged ongoing discussion with the family. When the patient did not imp r o v e after a n o t h e r 2 weeks, he was discharged to an inpatient hospice where he subsequently died. When his sister w a s called for an interview, she had b e e n unaware of the ethics consultation. Paradoxically, she said it was reassuring in r e t r o s p e c t to k n o w that the consult had t a k e n place, but without further c o m m e n t she said it had b e e n detrimental to the family. Satisfaction with Medical Decisions The interviewees w e r e asked in 2 separate questions if they w e r e satisfied w i t h the m e d i c a l decision which w a s m a d e for the patient, and if they w e r e satisfied w i t h the w a y the decision w a s m a d e . These questions a b o u t satisfaction w e r e separate f r o m their a s s e s s m e n t of the helpfulness of the ethics conAugust 1996 The American Journal of Medicine® Volume 101
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TABLE III Overall Satisfaction with Medical Decisions (n = 56) Percentage
Very satisfied Somewhat satisfied Uncertain Somewhat dissatisfied Very dissatisfied
56 21 12 4 7
sultation. Because "there was a high positive correlation b e t w e e n satisfaction with the decision m a d e and satisfaction with the way the decision was made ( r = 0.84; p < 0.05), an overall satisfaction score was calculated for group comparisons by averaging the 2. Results are s h o w n in T a b l e III. A total of 77% expressed s o m e degree of satisfaction and 11% expressed s o m e degree of dissatisfaction with the decision made. Some interviewees offered reasons for their dissatisfaction; the majority involved an assessm e n t of p o o r medical m a n a g e m e n t or a feeling that the physicians did not listen to the family's expression of the patient's wishes. Independent t-tests were calculated to see if any group differences could be identified concerning the interviewee's overall satisfaction. Satisfaction did not differ by patient's age, sex, or religious preference, nor by survival to discharge, ethical issue identiffed, or who made the medical decisions. Whites ( m e a n = 4.3; SD = 1.0) were significantly m o r e satisfied than non-whites ( m e a n = 3.8; SD = 1.3) (p < 0.05). Interviewees were significantly m o r e satisfied w h e n the case did not involve conflict about management of the patient ( m e a n = 4.3; SD = 0.86) than when conflict a b o u t medical m a n a g e m e n t was involved ( m e a n = 3.9; SD = 1.5) (p < 0.05). Correlational analysis indicated that overall satisfaction with the medical decision and helpfulness of the ethics consultation were not related. Of those who e x p r e s s e d s o m e degree of dissatisfaction, one third thought the ethics consultation had been very helpful, one third thought it had been s o m e w h a t helpful, and one third thought it was neither helpful nor detrimental. There was a positive correlation between overall satisfaction and degree of change in treatment, that is, interviewees were m o r e satisfied with the medical decisions and the w a y the decisions were made w h e n they believed the ethics consultation resulted in m o r e of a change in treatment (p = .007). Solicited or s p o n t a n e o u s c o m m e n t s from the interviewees were reviewed. Several offered constructive criticism, for example, suggesting that availability of the Ethics Consultation Service should be better publicized; the consultant should be involved sooner; ethics consultation should be automatic 138
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w h e n a patient is dying; the consultant should provide reading material on ethical issues for the family; or the chaplain should be m o r e involved in these consultations. One parent suggested there was need for repeated meetings b e t w e e n the family and the doctors, "because they have experience with ethical issues, but parents are faced with an acute p r o b l e m and have had no time to deal with these issues before." There w e r e a few negative c o m m e n t s such as "it t o o k 2 days for the consultant to talk to us," or "the consultant left us hung out to dry," or "we needed m o r e follow-up from a chaplain." T w o felt that they did not need the assistance of an ethics consultant, and one added "maybe the doctors thought there were s o m e issues to be discussed." Content analysis of interviewees' solicited and s p o n t a n e o u s c o m m e n t s provides preliminary data a b o u t what precisely patients and their families find helpful a b o u t ethics consultations. By reviewing these comments, and considering a p r o p o s e d concept and theory of ethics consultation, 9 we suggest that ethics consultation m a y have b e e n helpful to patients and families in several different ways: Clinical Clarity: S o m e t i m e s the ethics consultant m a y have been perceived as part of the clinical team. In that role, he or she m a y have increased the confidence of the patient or family in the total p r o c e s s of medical care and decision making. C o m m e n t s suggesting that this was h o w the consultation was helpful include: "he helped clear up the picture," "she didn't pull any punches," "he helped me realize h o w seriously ill she was," and "he helped us weigh the options m o r e objectively." Moral or Legal Clarity: The consultant m a y have increased the a w a r e n e s s of the patient and family of morally relevant issues. He or she m a y have articulated established values or rules, or m a y have helped them to recognize or verbalize their personal ideals. Sometimes he or she m a y have related moral or legal precedents which might be relevant in the particular clinical situation. C o m m e n t s of this sort included: "he helped us decide w h a t is right and wrong," "he helped us understand what is morally and legally OK," "she helped us determine w h a t w a s the best thing to do," and "he helped us understand the rationale, even though we disagreed with the decision." Motivation: Sometimes patients or families m a y understand w h a t is the best thing to do, but m a y not be able to bring themselves to do it. Although the ethics consultant cannot m a k e the choice for them, it is often possible to give t h e m clear direction a b o u t the p r o c e s s of judgment. One interviewee said "he confirmed that it was OK to stop treatment." Facilitation: On occasion, the role of the ethics consultant m a y be to involve marginalized family
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members, or to e m p o w e r timid individuals, or to just facilitate the p r o c e s s of decision-making. C o m m e n t s suggesting this type of help include: "she w a s willing to listen," "she m a d e the family re-think the decision before it w a s implemented," "he m a d e me think a b o u t the options," "he kept the family involved and informed," and "he helped soothe t e m p e r s and calm people down." Implementation: S o m e t i m e s the family m a y k n o w w h a t is the right ( o r b e s t ) thing to do, but not be able to accomplish it. The clinical ethicist w h o is familiar with the medical care s y s t e m m a y be able to facilitate the process. One daughter said "he helped us m o v e our father to a different hospital." Interpretation: In s o m e situations, the ethics consultant m a y serve as interpreter of different languages of discourse. He or she m a y bridge the gap b e t w e e n professional and layperson, or m a y facilitate other cross-cultural communication. C o m m e n t s included: "he w a s s o m e o n e outside the situation to s p e a k with," "he was m o r e objective," and "he helped us understand the cultural differences regarding stopping treatment." Consolation and Support: Often the ethics consultant is able to be reassuring a b o u t the decision or the decision-making p r o c e s s and can ease the stress of the situation. Sometimes it m a y be reassuring to hear that it is not only permissible, but also necessary to m a k e a tragic choice b e t w e e n 2 undesired options. Family m e m b e r s c o m m e n t e d that the consultant " m a d e us feel we w e r e not alone in making the difficult decision," or "had m o r e e m p a t h y than the treating doctors," and that the ethics consultation was "reassuring," "supportive," "eased a difficult situation," and "it t o o k the weight off the shoulders of the family and decreased the guilt we felt."
DISCUSSION Ethicists continue to disagree a b o u t the theoretical definition of an ethics consultation, 10 a b o u t w h o can be an ethics consultant, 11 and a b o u t w h e t h e r ethics consultations should be done by an ethics c o m m i t t e e or an individual ethicist. 12 In spite of lively debate on these questions, it is certain that growing n u m b e r s of ethics consults are being carried out, underscoring the i m p o r t a n c e of this study's central question, "Do ethics consultations help patients and their families?" This study of 56 ethics consultations provided over a 12-month period in one institution shows that they are perceived as helpful in the majority of cases (57%) and as detrimental in less than 5%. Even twothirds of the families w h o had low overall satisfaction with the medical decisions still felt that the ethics consultation had b e e n helpful.
Since previous studies had s h o w n that physicians found ethics consultations to be helpful 71% to 90% of the time, 2-4 it would a p p e a r that patients and famflies find ethics consultations to be helpful less often than do physicians. In fact, 2 of the interviewees spontaneously c o m m e n t e d that they had seen no need for the ethics consultation, but felt that " m a y b e the doctors needed s o m e help." It m a y be that famflies are o v e r w h e l m e d by the technical a s p e c t of t r e a t m e n t and the possibility of a p o o r outcome, and are less likely than physicians to consider the appropriateness or permissibility of specific courses of action. Should an ethics consultation service h o p e to find that physicians, patients, or families find their consultation helpful 100% of the time? Probably not. Requesting physicians report less than perfect satisfaction with consultations provided by a general medical service even though the mechanics and quality of those consultations s h o w a generally favorable rating by the s a m e physicians.l:} With regard to ethics consultation, if it is accepted that one of the goals is to articulate ethical standards, a r e c o m m e n d a t i o n that s o m e t r e a t m e n t options are outside the bounds of a c c e p t e d practice will assure that at least 1 party in a conflict-filled case will not be happy. It is interesting and important to note that the help perceived by families was not necessarily related to change in t r e a t m e n t resulting from the consultation. Even though 57% found the consult helpful, only 20% of our patients/families felt that the consult had led to a major change in treatment. This 20% is even lower than earlier evaluations by physicians w h o felt that ethics consultations significantly changed patient m a n a g e m e n t in only a minority of cases (36% in our earlier study3). It is also interesting to note that the p e r c e n t a g e s of interviewees w h o found the ethics consultation helpful or detrimental did not vary significantly b a s e d u p o n the ethicist's content-oriented versus process-oriented recommendations. Nor did the percentages vary significantly b a s e d upon w h e t h e r the identified ethical issues involved conflict or not. However, the interviewees did show greater satisfaction with the decision w h e n there w a s no apparent conflict. When the patients in this study w e r e sicker, the interviewee felt the consultant was less helpful to the patients. This m a y reflect the resignation that with a very p o o r prognosis, there is not m u c h that anyone can do to change the course of events. Or it m a y d e m o n s t r a t e the difficulty s o m e families had in differentiating the ethics consultation p r o c e s s from the ultimate o u t c o m e for their loved one. As a group, non-whites had a significantly lower m e a n overall satisfaction with the decisions and the August 1996 The American Journal of Medicine® Volume 101
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way the decisions were m a d e c o m p a r e d to whites. Closer examination of the distribution of responses indicates that a few non-whites w e r e very dissatisfied while m o s t had overall satisfaction scores comparable to the whites. Our small sample size did not allow c o m p a r i s o n of the non-whites to examine statistical differences b e t w e e n African-Americans, Mexican-Americans, and Asian-Americans. However, of the 21 non-whites, all 5 African-Americans were very satisfied, w h e r e a s 2 Mexican-Americans and 1 Asian-American were very dissatisfied. This finding requires further study. Other investigators have found ethnic differences in desires for life-prolonging t r e a t m e n t s ) 4 Others have s h o w n that crosscultural differences m a y m a s q u e r a d e as ethical dil e m m a s ) 5 Blackhall et al~6 have s h o w n that Korean-American and Mexican-American subjects are m o r e likely to hold a family-centered model of medical decision-making rather than the patient aut o n o m y model favored by m o s t African-American and European-American subjects. However, other possible explanations of our findings include p o o r communication across a language barrier, that ethnicity merely reflects religious beliefs or attitudes a b o u t end-of-life treatment issues, or family concerns a b o u t racial disparity in access to ~ or quality of medical care.~8 Our study has several limitations. We did not att e m p t to interview 5 families b e c a u s e we had no contact with them during the consultation process, and 3 others because we perceived that the conflict in the case might subsequently lead to legal action. In addition, 6 families declined to be interviewed. These exclusions and refusals represent situations in which m o r e negative evaluation of our services could be anticipated. In fact in 1 case where we did interview a family that we had been unable to contact during consultation, the interviewee felt that it had been detrimental. A second limitation of our study is that the person we interviewed m a y not always have b e e n the m o s t knowledgeable. In 1 case, a child's parents had m o v e d from the area and were not available by telephone, so we interviewed an uncle of the patient. Although he had b e e n involved in the hospital discussions, we cannot be certain that he reflected the parents' perceptions of the situation. Or, even w h e n the interviewee a p p e a r e d to be the m o s t knowledgeable, he or she m a y have had a different evaluation than other family members. In 1 case, we talked to the patient's son w h o was the designated surrogate and he felt the consultation had b e e n helpful. He pointed out that the issue involved w h e t h e r or not to follow his sister's lone insistence on continuation of treatment. If we had interviewed her, she m a y have had a different perception of the value of the 140
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consultation. Future research should include interviews of the family m e m b e r s involved as a group. Finally, we believe that s o m e patients and families m a y have a difficult time differentiating b e t w e e n the ethics consultation, the medical decision, and the o u t c o m e of the case. In summary, we have d e m o n s t r a t e d that ethics consultations provided by the Ethics Consultation Service at L o m a Linda University Medical Center are perceived by patients and families as helpful in a majority of instances, and only occasionally are they felt to be detrimental. Patients and families were m o r e likely to perceive the consultation as helpful w h e n they also felt that the consultation resulted in a major change in treatment, and they w e r e less likely to have found it helpful w h e n the patients were m o r e seriously ill. In addition, m o s t of the patients and families we interviewed were satisfied with the medical decisions ultimately made. Again, they were m o r e likely to be satisfied if they felt that the ethics consultation resulted in a major change in patient management. In this preliminary study, we purposely asked open-ended questions to learn reasons interviewees found the ethics consultation to be helpful or detrimental. The study w a s designed to determine w h e t h e r such consultations were helpful to families, and to generate h y p o t h e s e s a b o u t the ways they might be helpful. Based on the anecdotal c o m m e n t s of our interviewees, we have postulated seven ways we believe the ethics consultations were perceived as helpful. Reflection on our interpretation, and future empiric study of this question could help ethicists refine existing consultation services to m a k e t h e m better received by patients and families. Such data could also help in the design of training curricula by showing which aspects of consultations are perceived as important to patients and families. Documentation of patient and family satisfaction with ethics consultations should also be important to Quality A s s e s s m e n t personnel and other administrators of healthcare facilities, especially as the question of third-party r e i m b u r s e m e n t for this service is discussed in the future. Finally, further data could assist the new discipline of clinical ethics as it w o r k s out practice standards for ethics consultants.
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ETHICS CONSULTATION SERVICES/ORR El" AL 5. LaPuma J. Satisfying managed care patients through ethics consultations. Managed Care October. 1995:53-54. 6. Tulsky JA, Lo B. Ethics consultation: time to focus on patients. Am .] Med. 1992:343-345. 7. deLeon DM, Morton K, Genesen L8, Orr RD. Issues and recommendations in ethics consultations: a content-oriented taxonomy, under review. 8. Fiser DH. Assessing the outcome of pediatric intensive care../Pediatrics. 1992; 121:68-74. 9. Ozar DT. Appropriate outcomes for ethics consultations and suggestions for assessment. Workshop presentation at the 9th Annual Meeting of the Society for 8ioethics Consultation; Cleveland, OH; September 16, 1995. 10. Fletcher JC. Needed: a broader view of ethics consultation. Qua/Rev Bull. 1992; 18(1):12-14. 11. LaPuma J, Schiederrnayer DL. Ethics consultation: skills, roles, and training. Ann Intern Med. 1991; 114:155-160.
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PURPOSE: The purpose of this study was to determine whether patients and their families found ethics consultations to be helpful and whether they were satisfied with the treatment decisions that were made in those cases where ethics consultation was requested. METHODS: Interviews were conducted with each patient (or surrogate) concerning whom an ethics consultation had been provided during a 1-year period at Loma Linda University Medical Center, excepting those who met exclusion criteria. The interview was done by telephone a few weeks after hospital discharge. It included multiple choice and open-ended questions. A content analysis was done on the solicited and spontaneous comments. RESULTS: Eighty-six ethics consultations were provided and interviews were completed for 56 of them (65%). Fifty-seven percent of interviewees found the ethics consultation to have been helpful, and only 4% found them to have been detrimental. Interviewees were more likely to have found the consultation helpful when they perceived that it had resulted in a significant change in treatment, and were less likely to have found it helpful when the patients were more seriously ill. In addition, 77% were satisfied with the treatment decisions made, and 11% showed some degree of dissatisfaction. CONCLUSIONS: Patients and families found ethics consultation provided by clinical ethicists at Loma Linda University Medical Center to be helpful in a majority of instances, and rarely found them detrimental. Based on an analysis of their comments, we believe ethics consultations were perceived as helpful in 7 ways: increased clinical clarity, increased moral or legal clarity, motivation to do what they believe is right, facilitation of the process of decision-making, implementation of a decision, interpretation of
From Loma Linda University,Loma Linda, California. Requestsfor reprints should be addressedto Robert D. Orr, MD, Director of Clinical Ethics, Loma Linda UniversityMedical Center, 11340 Mountain View--Suite C, Loma Linda, CA 92354. Manuscript receivedOctober 17, 1995 and accepted in revised form April 26, 1996.
©1996 by Excerpta Medica, Inc. All rights reserved.
technical language, and consolation and support. Am J Med. 1996;101:135-141. linical ethics consultations are a relatively new service, having b e c o m e available to medical professionals, patients, and families only in the past decade. There are no recognized outcome measures to determine the efficacy of ethics consultations. A few empiric studies have demonstrated that physicians place a high value on the services provided by ethics consultants, 1-4 demonstrating that physicians found ethics consultations very helpful in clarifying ethical issues, educating the healthcare team, increasing confidence in decisions, and patient management. No reports published have evaluated ethics consultations from the perspective of patients or their families. 5 In editorial comment, Tulsky and Lo 6 criticized this lack of patient or family perspective in ethics consultation evaluations. They also noted that the evaluations to date had only examined whether ethics consultations were helpfifl or not helpful; the possibility of adverse effects of consultations had not been investigated. This study attempts to evaluate clinical ethics consultations from a patient/family perspective by determining whether patients and families find ethics consultations helpful, whether consultations help them arrive at treatment decisions, and whether they are ultimately satisfied with the decision made. We also studied patient demographics and other characteristics to try to identify factors that influence the patient/family perspective on the consultation process or on their satisfaction with the clinical decision.
C
METHODS Following approval by the Loma Linda University Institutional Review Board, a prospective study of patient and family perspective of ethics consultation was undertaken for consults provided between February 1, 1994 and January 31, 1995 by the three clinical ethicists of the Ethics Consultation Service at Loma Linda University Medical Center, a 625 bed tertiary care teaching hospital, and Loma Linda University Community Medical Center, a 120 bed primary care facility. The Ethics Consultation Service has been in operation since 1990 and its methods have been previously described, a It has provided an average of 84 ethics consultations per year since 1991, 0002-9343/96/$15.00 PII S0002-9343(96)00115-5
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TABLE I Patient Characteristics (n = 56) No. (%)
No. (%)
Sex:
Female Male
33 (59) 23 (41)
Religion:
Protestant Catholic Jewish Other None Unknown
22 (39) 10 (18) 1 (2) 9 (16) 4 (7) 10 (18)
Illness Severity:
Severe Serious Moderate Mild Healthy
24 (43) 22 (39) 5 (9) 1 (2) 4 (7)
Decision-Making Capacity:
Had DMC Borderline DMC No DMC
12 (21) 7 (13) 37 (66)
responding to requests from any m e m b e r of the healthcare team or from patients or families. Our research instrument was developed from a pilot study done in 1993 during which 15 patients and family m e m b e r s were asked a series of open-ended questions about the ethics consultation process and their a s s e s s m e n t of it. From a content analysis of their responses, we developed a structured interview consisting of 16 multiple-choice questions and 5 follow-up open-ended questions. The questionnaire is available from the authors. At the time of each consultation during the study period, the ethicist noted whether the patient would be able to answer evaluation questions or, if not, w h o would be an appropriate surrogate for the patient. In addition, the ethicist categorized both the ethical issues identified and his or her r e c o m m e n d a t i o n s using a new t a x o n o m y for ethics consultations prop o s e d by the authors 7 which identifies 7 types of ethical issues and 5 types of recommendations. Stratification by ethical issue allows identification of those cases where there was conflict from those where no conflict was apparent. This t a x o n o m y also allows differentiation of cases where the r e c o m m e n dations are primarily content-oriented (eg, articulation of ethical standards) from those which are primarily process-oriented (eg, facilitation of conflict resolution). This t a x o n o m y is also available from the authors. At the time of discharge, the consultant reviewed each consultation for exclusion criteria, which were (1) patients without decision-making capacity w h o had no surrogate, (2) patients without decision-making capacity where the ethics consultant had s p o k e n 136
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Age:
0-18 years 19-40 years 41-65 years >65 years
10 (18) 11 (20) 18 (32) 17 (30)
Race:
White Mexican-American African-American Asian-American
35 (63) 11 (20) 5 (9) 5 (9)
Survival:
Died in hospital Survived to discharge Died shortly after Alive at interview
23 (41) 33 (59) 9 (16) 24 (43)
only with the professional t e a m and had no contact with the family, and (3) cases with potential liability issues, as assessed by the consultant. Approximately one month after discharge a letter explaining the study was sent by the Director of Clinical Ethics to the patient or identified surrogate in all cases that were not excluded. A research assistant subsequently telephoned the addressee and conducted the interview after obtaining verbal consent. Interviews lasted 10 to 20 minutes. A content analysis was done on the verbatim responses to the open-ended questions in an a t t e m p t to categorize the ways in which patients or family m e m b e r s found ethics consultations to be helpful or detrimental.
RESULTS Clinical ethics consultations w e r e completed for 86 patients during the 12-month study period. No att e m p t was m a d e to interview the patient or family in 11 instances; 5 b e c a u s e the consultant had no contact with the family during the consultation and the patient w a s unable to participate in an interview, 3 because of concern about potential professional liability (family angry a b o u t initial e m e r g e n c y r o o m treatment; brain damage in a neonate from hypernatremia; hypoxic brain damage in a child during e m e r g e n c y intubation), 2 b e c a u s e there was no identifiable surrogate, and 1 because the patient was an abused child w h o s e parents w e r e in jail at the time of the survey. In 13 instances, the patient or surrogate could not be located. Contact was m a d e with 62 patients or surrogates, 6 of w h o m declined to participate, so that 56 interviews were completed.
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Patient characteristics are r e c o r d e d in T a b l e I. Severity of illness was assessed using a modification of a classification offered by Fiser. a Interviews w e r e conducted with 7 patients, 12 parents, 12 spouses, 15 adult sons or daughters, 4 siblings, 1 other family m e m b e r , and 5 friends of patients (including legal guardian, involved neighbor for socially isolated patient, e t c ) . Assessment of Ethics Consultation The interviewees were a s k e d if the ethics consultation had b e e n helpful to the patient's family, using a 5-point Likert scale (1 = very detrimental, 2 = s o m e w h a t detrimental, 3 = neither helpful nor detrimental, 4 = s o m e w h a t helpful, and 5 = very helpful). Responses to this question can be found in T a b l e II. Thirty-two r e s p o n d e n t s (57%) found the ethics consultation to offer s o m e help. They w e r e also asked, "Was the ethics consultation helpful or detrimental to the patient?" Thirty-two (57%) said that it had b e e n neither helpful nor detrimental, and 15 (27%) w e r e unable to a n s w e r the question. The intent of the question m a y not have b e e n clear to s o m e of the interviewees since several c o m m e n t e d voluntarily, "How could it have helped? The patient w a s unconscious!" or, "The patient died!" When asked if the ethics consultation had resulted in a change in t r e a t m e n t plans for the patient, 17 (30%) did not know, 21 (38%) said it had resulted in little or no change, 7 (13%) thought it had resulted in s o m e change, and only 11 (20%) felt that it had resulted in a m a j o r change in treatment. Pearson correlation coefficients w e r e used to determine the linear relationships b e t w e e n helpfulness of ethics consultation and other variables, including those a s s e s s e d by the consultant (decision-making capacity, severity of illness, survival to discharge, time lapse f r o m discharge to interview) and res p o n s e s of the interviewees (satisfaction with medical decisions, a m o u n t of change in t r e a t m e n t brought a b o u t by the consultation). Only 2 correlations were significant. Severity of illness was negatively correlated with helpfulness to the patient ( r = -0.50; p < 0.05); w h e n patients were sicker, the interviewee felt the consult w a s less helpful to the patients. There was a positive correlation b e t w e e n the a m o u n t of t r e a t m e n t change perceived to have resuited f r o m the ethics consultation and the degree of helpfulness to the family ( r = 0.35;.p < 0.05). Ethics Consultations P e r c e i v e d as Detrimental The 2 cases in which the interviewee felt that the ethics consultation had b e e n detrimental to the family w e r e reviewed. In one, a 70-year-old w o m a n suffered a devastating intraoperative c e r e b r o v a s c u l a r accident and w a s still unconscious 14 days after the
TABLE II Was the Ethics Consultation Helpful or Detrimental to the Family? Response Number Percent 5 = Very helpful 4 = Somewhat helpful 3 = Neither helpful nor detrimental 2 = Somewhat detrimental 1 = Very detrimental No response
23 9 21 0 2 1
Total
56
41 16 38 0 4 2
event. Consultation was requested b e c a u s e her son was unwilling to discuss the surgeon's r e c o m m e n dation for withdrawal of treatment. The surgeon told him she w a s unstable and would likely not survive. When the consultant mentioned this p o o r prognosis to her son, he was visibly s h a k e n and said that he did not realize she w a s so critically ill. He agreed to withdraw the ventilator, but she survived and w a s later discharged to a nursing home. She was slightly improved at the time of the interview 2 months later. During the interview, the son c o m m e n t e d that the ethics consultant should not have b e e n so pessimistic a b o u t the prognosis. In the other case, a 65-year-old retarded ( b u t previously quite functional) m a n had b e e n treated aggressively for 2 w e e k s for a systemic fungal infection. His family requested hospice care and the consult was requested to discuss the appropriateness of withdrawal of antibiotics. His physicians believed there w a s a reasonable chance that the patient could survive and return to his baseline level of functioning with continued aggressive treatment. In spite of several attempts, the consultant w a s unable to reach any family m e m b e r s for discussion. He felt it was ethically permissible to pursue a time-limited trial of therapy and he encouraged ongoing discussion with the family. When the patient did not imp r o v e after a n o t h e r 2 weeks, he was discharged to an inpatient hospice where he subsequently died. When his sister w a s called for an interview, she had b e e n unaware of the ethics consultation. Paradoxically, she said it was reassuring in r e t r o s p e c t to k n o w that the consult had t a k e n place, but without further c o m m e n t she said it had b e e n detrimental to the family. Satisfaction with Medical Decisions The interviewees w e r e asked in 2 separate questions if they w e r e satisfied w i t h the m e d i c a l decision which w a s m a d e for the patient, and if they w e r e satisfied w i t h the w a y the decision w a s m a d e . These questions a b o u t satisfaction w e r e separate f r o m their a s s e s s m e n t of the helpfulness of the ethics conAugust 1996 The American Journal of Medicine® Volume 101
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TABLE III Overall Satisfaction with Medical Decisions (n = 56) Percentage
Very satisfied Somewhat satisfied Uncertain Somewhat dissatisfied Very dissatisfied
56 21 12 4 7
sultation. Because "there was a high positive correlation b e t w e e n satisfaction with the decision m a d e and satisfaction with the way the decision was made ( r = 0.84; p < 0.05), an overall satisfaction score was calculated for group comparisons by averaging the 2. Results are s h o w n in T a b l e III. A total of 77% expressed s o m e degree of satisfaction and 11% expressed s o m e degree of dissatisfaction with the decision made. Some interviewees offered reasons for their dissatisfaction; the majority involved an assessm e n t of p o o r medical m a n a g e m e n t or a feeling that the physicians did not listen to the family's expression of the patient's wishes. Independent t-tests were calculated to see if any group differences could be identified concerning the interviewee's overall satisfaction. Satisfaction did not differ by patient's age, sex, or religious preference, nor by survival to discharge, ethical issue identiffed, or who made the medical decisions. Whites ( m e a n = 4.3; SD = 1.0) were significantly m o r e satisfied than non-whites ( m e a n = 3.8; SD = 1.3) (p < 0.05). Interviewees were significantly m o r e satisfied w h e n the case did not involve conflict about management of the patient ( m e a n = 4.3; SD = 0.86) than when conflict a b o u t medical m a n a g e m e n t was involved ( m e a n = 3.9; SD = 1.5) (p < 0.05). Correlational analysis indicated that overall satisfaction with the medical decision and helpfulness of the ethics consultation were not related. Of those who e x p r e s s e d s o m e degree of dissatisfaction, one third thought the ethics consultation had been very helpful, one third thought it had been s o m e w h a t helpful, and one third thought it was neither helpful nor detrimental. There was a positive correlation between overall satisfaction and degree of change in treatment, that is, interviewees were m o r e satisfied with the medical decisions and the w a y the decisions were made w h e n they believed the ethics consultation resulted in m o r e of a change in treatment (p = .007). Solicited or s p o n t a n e o u s c o m m e n t s from the interviewees were reviewed. Several offered constructive criticism, for example, suggesting that availability of the Ethics Consultation Service should be better publicized; the consultant should be involved sooner; ethics consultation should be automatic 138
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w h e n a patient is dying; the consultant should provide reading material on ethical issues for the family; or the chaplain should be m o r e involved in these consultations. One parent suggested there was need for repeated meetings b e t w e e n the family and the doctors, "because they have experience with ethical issues, but parents are faced with an acute p r o b l e m and have had no time to deal with these issues before." There w e r e a few negative c o m m e n t s such as "it t o o k 2 days for the consultant to talk to us," or "the consultant left us hung out to dry," or "we needed m o r e follow-up from a chaplain." T w o felt that they did not need the assistance of an ethics consultant, and one added "maybe the doctors thought there were s o m e issues to be discussed." Content analysis of interviewees' solicited and s p o n t a n e o u s c o m m e n t s provides preliminary data a b o u t what precisely patients and their families find helpful a b o u t ethics consultations. By reviewing these comments, and considering a p r o p o s e d concept and theory of ethics consultation, 9 we suggest that ethics consultation m a y have b e e n helpful to patients and families in several different ways: Clinical Clarity: S o m e t i m e s the ethics consultant m a y have been perceived as part of the clinical team. In that role, he or she m a y have increased the confidence of the patient or family in the total p r o c e s s of medical care and decision making. C o m m e n t s suggesting that this was h o w the consultation was helpful include: "he helped clear up the picture," "she didn't pull any punches," "he helped me realize h o w seriously ill she was," and "he helped us weigh the options m o r e objectively." Moral or Legal Clarity: The consultant m a y have increased the a w a r e n e s s of the patient and family of morally relevant issues. He or she m a y have articulated established values or rules, or m a y have helped them to recognize or verbalize their personal ideals. Sometimes he or she m a y have related moral or legal precedents which might be relevant in the particular clinical situation. C o m m e n t s of this sort included: "he helped us decide w h a t is right and wrong," "he helped us understand what is morally and legally OK," "she helped us determine w h a t w a s the best thing to do," and "he helped us understand the rationale, even though we disagreed with the decision." Motivation: Sometimes patients or families m a y understand w h a t is the best thing to do, but m a y not be able to bring themselves to do it. Although the ethics consultant cannot m a k e the choice for them, it is often possible to give t h e m clear direction a b o u t the p r o c e s s of judgment. One interviewee said "he confirmed that it was OK to stop treatment." Facilitation: On occasion, the role of the ethics consultant m a y be to involve marginalized family
ETHICS CONSULTATION SERVICES/ORR ET AL
members, or to e m p o w e r timid individuals, or to just facilitate the p r o c e s s of decision-making. C o m m e n t s suggesting this type of help include: "she w a s willing to listen," "she m a d e the family re-think the decision before it w a s implemented," "he m a d e me think a b o u t the options," "he kept the family involved and informed," and "he helped soothe t e m p e r s and calm people down." Implementation: S o m e t i m e s the family m a y k n o w w h a t is the right ( o r b e s t ) thing to do, but not be able to accomplish it. The clinical ethicist w h o is familiar with the medical care s y s t e m m a y be able to facilitate the process. One daughter said "he helped us m o v e our father to a different hospital." Interpretation: In s o m e situations, the ethics consultant m a y serve as interpreter of different languages of discourse. He or she m a y bridge the gap b e t w e e n professional and layperson, or m a y facilitate other cross-cultural communication. C o m m e n t s included: "he w a s s o m e o n e outside the situation to s p e a k with," "he was m o r e objective," and "he helped us understand the cultural differences regarding stopping treatment." Consolation and Support: Often the ethics consultant is able to be reassuring a b o u t the decision or the decision-making p r o c e s s and can ease the stress of the situation. Sometimes it m a y be reassuring to hear that it is not only permissible, but also necessary to m a k e a tragic choice b e t w e e n 2 undesired options. Family m e m b e r s c o m m e n t e d that the consultant " m a d e us feel we w e r e not alone in making the difficult decision," or "had m o r e e m p a t h y than the treating doctors," and that the ethics consultation was "reassuring," "supportive," "eased a difficult situation," and "it t o o k the weight off the shoulders of the family and decreased the guilt we felt."
DISCUSSION Ethicists continue to disagree a b o u t the theoretical definition of an ethics consultation, 10 a b o u t w h o can be an ethics consultant, 11 and a b o u t w h e t h e r ethics consultations should be done by an ethics c o m m i t t e e or an individual ethicist. 12 In spite of lively debate on these questions, it is certain that growing n u m b e r s of ethics consults are being carried out, underscoring the i m p o r t a n c e of this study's central question, "Do ethics consultations help patients and their families?" This study of 56 ethics consultations provided over a 12-month period in one institution shows that they are perceived as helpful in the majority of cases (57%) and as detrimental in less than 5%. Even twothirds of the families w h o had low overall satisfaction with the medical decisions still felt that the ethics consultation had b e e n helpful.
Since previous studies had s h o w n that physicians found ethics consultations to be helpful 71% to 90% of the time, 2-4 it would a p p e a r that patients and famflies find ethics consultations to be helpful less often than do physicians. In fact, 2 of the interviewees spontaneously c o m m e n t e d that they had seen no need for the ethics consultation, but felt that " m a y b e the doctors needed s o m e help." It m a y be that famflies are o v e r w h e l m e d by the technical a s p e c t of t r e a t m e n t and the possibility of a p o o r outcome, and are less likely than physicians to consider the appropriateness or permissibility of specific courses of action. Should an ethics consultation service h o p e to find that physicians, patients, or families find their consultation helpful 100% of the time? Probably not. Requesting physicians report less than perfect satisfaction with consultations provided by a general medical service even though the mechanics and quality of those consultations s h o w a generally favorable rating by the s a m e physicians.l:} With regard to ethics consultation, if it is accepted that one of the goals is to articulate ethical standards, a r e c o m m e n d a t i o n that s o m e t r e a t m e n t options are outside the bounds of a c c e p t e d practice will assure that at least 1 party in a conflict-filled case will not be happy. It is interesting and important to note that the help perceived by families was not necessarily related to change in t r e a t m e n t resulting from the consultation. Even though 57% found the consult helpful, only 20% of our patients/families felt that the consult had led to a major change in treatment. This 20% is even lower than earlier evaluations by physicians w h o felt that ethics consultations significantly changed patient m a n a g e m e n t in only a minority of cases (36% in our earlier study3). It is also interesting to note that the p e r c e n t a g e s of interviewees w h o found the ethics consultation helpful or detrimental did not vary significantly b a s e d u p o n the ethicist's content-oriented versus process-oriented recommendations. Nor did the percentages vary significantly b a s e d upon w h e t h e r the identified ethical issues involved conflict or not. However, the interviewees did show greater satisfaction with the decision w h e n there w a s no apparent conflict. When the patients in this study w e r e sicker, the interviewee felt the consultant was less helpful to the patients. This m a y reflect the resignation that with a very p o o r prognosis, there is not m u c h that anyone can do to change the course of events. Or it m a y d e m o n s t r a t e the difficulty s o m e families had in differentiating the ethics consultation p r o c e s s from the ultimate o u t c o m e for their loved one. As a group, non-whites had a significantly lower m e a n overall satisfaction with the decisions and the August 1996 The American Journal of Medicine® Volume 101
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way the decisions were m a d e c o m p a r e d to whites. Closer examination of the distribution of responses indicates that a few non-whites w e r e very dissatisfied while m o s t had overall satisfaction scores comparable to the whites. Our small sample size did not allow c o m p a r i s o n of the non-whites to examine statistical differences b e t w e e n African-Americans, Mexican-Americans, and Asian-Americans. However, of the 21 non-whites, all 5 African-Americans were very satisfied, w h e r e a s 2 Mexican-Americans and 1 Asian-American were very dissatisfied. This finding requires further study. Other investigators have found ethnic differences in desires for life-prolonging t r e a t m e n t s ) 4 Others have s h o w n that crosscultural differences m a y m a s q u e r a d e as ethical dil e m m a s ) 5 Blackhall et al~6 have s h o w n that Korean-American and Mexican-American subjects are m o r e likely to hold a family-centered model of medical decision-making rather than the patient aut o n o m y model favored by m o s t African-American and European-American subjects. However, other possible explanations of our findings include p o o r communication across a language barrier, that ethnicity merely reflects religious beliefs or attitudes a b o u t end-of-life treatment issues, or family concerns a b o u t racial disparity in access to ~ or quality of medical care.~8 Our study has several limitations. We did not att e m p t to interview 5 families b e c a u s e we had no contact with them during the consultation process, and 3 others because we perceived that the conflict in the case might subsequently lead to legal action. In addition, 6 families declined to be interviewed. These exclusions and refusals represent situations in which m o r e negative evaluation of our services could be anticipated. In fact in 1 case where we did interview a family that we had been unable to contact during consultation, the interviewee felt that it had been detrimental. A second limitation of our study is that the person we interviewed m a y not always have b e e n the m o s t knowledgeable. In 1 case, a child's parents had m o v e d from the area and were not available by telephone, so we interviewed an uncle of the patient. Although he had b e e n involved in the hospital discussions, we cannot be certain that he reflected the parents' perceptions of the situation. Or, even w h e n the interviewee a p p e a r e d to be the m o s t knowledgeable, he or she m a y have had a different evaluation than other family members. In 1 case, we talked to the patient's son w h o was the designated surrogate and he felt the consultation had b e e n helpful. He pointed out that the issue involved w h e t h e r or not to follow his sister's lone insistence on continuation of treatment. If we had interviewed her, she m a y have had a different perception of the value of the 140
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consultation. Future research should include interviews of the family m e m b e r s involved as a group. Finally, we believe that s o m e patients and families m a y have a difficult time differentiating b e t w e e n the ethics consultation, the medical decision, and the o u t c o m e of the case. In summary, we have d e m o n s t r a t e d that ethics consultations provided by the Ethics Consultation Service at L o m a Linda University Medical Center are perceived by patients and families as helpful in a majority of instances, and only occasionally are they felt to be detrimental. Patients and families were m o r e likely to perceive the consultation as helpful w h e n they also felt that the consultation resulted in a major change in treatment, and they w e r e less likely to have found it helpful w h e n the patients were m o r e seriously ill. In addition, m o s t of the patients and families we interviewed were satisfied with the medical decisions ultimately made. Again, they were m o r e likely to be satisfied if they felt that the ethics consultation resulted in a major change in patient management. In this preliminary study, we purposely asked open-ended questions to learn reasons interviewees found the ethics consultation to be helpful or detrimental. The study w a s designed to determine w h e t h e r such consultations were helpful to families, and to generate h y p o t h e s e s a b o u t the ways they might be helpful. Based on the anecdotal c o m m e n t s of our interviewees, we have postulated seven ways we believe the ethics consultations were perceived as helpful. Reflection on our interpretation, and future empiric study of this question could help ethicists refine existing consultation services to m a k e t h e m better received by patients and families. Such data could also help in the design of training curricula by showing which aspects of consultations are perceived as important to patients and families. Documentation of patient and family satisfaction with ethics consultations should also be important to Quality A s s e s s m e n t personnel and other administrators of healthcare facilities, especially as the question of third-party r e i m b u r s e m e n t for this service is discussed in the future. Finally, further data could assist the new discipline of clinical ethics as it w o r k s out practice standards for ethics consultants.
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ETHICS CONSULTATION SERVICES/ORR El" AL 5. LaPuma J. Satisfying managed care patients through ethics consultations. Managed Care October. 1995:53-54. 6. Tulsky JA, Lo B. Ethics consultation: time to focus on patients. Am .] Med. 1992:343-345. 7. deLeon DM, Morton K, Genesen L8, Orr RD. Issues and recommendations in ethics consultations: a content-oriented taxonomy, under review. 8. Fiser DH. Assessing the outcome of pediatric intensive care../Pediatrics. 1992; 121:68-74. 9. Ozar DT. Appropriate outcomes for ethics consultations and suggestions for assessment. Workshop presentation at the 9th Annual Meeting of the Society for 8ioethics Consultation; Cleveland, OH; September 16, 1995. 10. Fletcher JC. Needed: a broader view of ethics consultation. Qua/Rev Bull. 1992; 18(1):12-14. 11. LaPuma J, Schiederrnayer DL. Ethics consultation: skills, roles, and training. Ann Intern Med. 1991; 114:155-160.
12. Swenson MD, Miller RB. Ethics case review in health care institutions: committees, consultants, or teams? Arch Intern Med. 1992; 152:694697. 13. Charlson ME, Cohen RP, Sears CL. General medicine consultation: lessons from a clinical service. Am J Med. 1983; 75:421-426. 14. Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicit~ and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics. 1993;4(2):155-165. 15. Orr RD, Marshall PA, Osborn J. Cross-cultural considerations in clinical ethics consultations. Arch Faro Med. 1995;4(2):159-164. 16. Blackhall LJ, Murphy ST, Frank G, et al. Ethnicity and attitudes toward patient autonomy. JAMA. 1995; 274:820-825. 17. Blendon RJ, Aiken LH, Freeman HE, Corey CR. Access to medical care for black and white Americans. JAMA. 1989; 261(2):278-282. 18. Black-white disparities in health care. Council on Ethical and Judicial Affairs. JAMA. 1990; 263(17):2344-2346.
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