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PEDIATRICS Vol. 105 No. 3 March 2000, pp. 591-597

Informed Proxy Consent: Communication Between Pediatric Surgeons and Surrogates About Surgery

Myrna Lashley, PhD*, William Talley, PhD*, Larry C. Lands, MDCM, PhDDagger , and Edward W. Keyserlingk, PhD§

From the Departments of * Counselling Psychology, Faculty of Arts and Science, and Dagger  Pediatrics; and the § Biomedical Ethics Unit, McGill University, Montreal, Quebec, Canada.


    ABSTRACT
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Abstract
MaterialsMethods
Results
Discussion
Conclusion
References

Objective.  Informed consent for surgical procedures requires that the procedures are explained and that the patient understands the procedures and risks and agrees to undergo them. Proxy consent occurs when an individual is provided with the legal right to make decisions on behalf of another. This study was conducted to determine how surgeons communicate information to obtain an informed proxy consent, and to investigate how that information is received and processed by surrogates responsible for providing such consent.

Study Design.  Twenty English-speaking parents or legal guardians and 5 surgeons in an urban pediatric hospital were interviewed before, and 2 to 4 weeks after, the surgical procedure. In addition, the interview between the surgeon and surrogate, when consent was obtained, was audiotaped and subsequently analyzed. Semistructured interviews were used to elicit the motivations and influences on the surrogates to consent to the procedure. The same methodology was used to elicit the corresponding impressions of the surgeons. The data were analyzed using descriptive statistics and crosstabulations.

Results.  Demographic data did not influence the results. Although there was concordance between the surrogate's understanding of the procedure and the surgeon's impression of this understanding, only 3 of 17 surrogates could recall any specifics of the explained procedure. Contrary to the stated belief of surgeons, surrogates consulted with a variety of others, including medical and paramedical professionals, family members, and spiritual leaders.

Conclusions.  Communication plays an important role within the surrogate-surgeon dyad. Psychologic variables such as expectations, and the perception of both the surrogates and the surgeons, influence the amount of information that is proffered and the manner in which it is received. Improved communication may be achieved by use of visual aids, discussion of anesthesia and the postoperative course, recognition of the circumstances around the discussion, such as timing and location of the discussion, and personalization of the discussion.  Key words:  surrogate, surgical procedure, informed consent.

Informed consent is one of the most important doctrines governing professional conduct, grounded as it is in a basic human right---freedom from institutional coercion. In medicine, a patient, or the patient's surrogate, is informed of the procedures which the doctor proposes to undertake in the attempt to treat the individual and then, based on this information, the patient is asked to provide consent. This process includes the following elements: the doctor has adequately explained the procedures (and possible alternatives) and their risks; the patient indicates that these procedures and risks have been understood; and, finally, the patient agrees to undergo them. In addition, when invasive therapy is necessary, the patient is required to sign a consent form attesting to all the above. Nonetheless, despite these requirements and precautions, instances still arise in which patients claim to have been inadequately provided with the information necessary to make informed decisions.1-3 Such claims may not only lead to charges of malpractice being levied against the surgeon, but, more importantly, to feelings of mistrust between the medical profession and the general public, most of which may be based on ineffective communication.

For communication to be effective, it must be comprised of 2 essential elements, namely, the conveying of information by a person, and the comprehension of the content of such information by another. Yet, when looked at critically, effective communication may occur less often than is surmised. For example, Byrne, Napier, and Cuschieri4 conducted a study which showed that of 100 patients interviewed between 2 and 5 days after surgery, 27 had no idea which organ had undergone the operation and 44 did not know the exact nature of their surgical procedure.

Proxy consent occurs when an individual is provided with the legal right to make decisions on behalf of another who is unable to do so for himself or herself. Thus, a parent providing, or refusing, consent for a minor is doing so in the capacity of a proxy. In those instances when parents are called on to provide consent on behalf of their children, the parents must meet the same requirements of competency which would be needed if they were granting consent on behalf of themselves. In addition, and as advanced by some researchers,5,6 an assumption is made that the parents are acting in the best interest of the child and is thus better able to decide for the child than anyone else who might be substituted in their stead.

Despite this assumption, there are limited data concerning proxy decisions being made for children. To investigate some of the issues surrounding proxy consent, Alderson6 conducted a study aimed at determining how parents experience their children's illness and its treatment and, how involved and informed they felt in the medical and nursing decision-making process. Her results suggested that, on the whole, parents felt better about the decisions made on behalf of their children when they (the parents) perceived themselves to be part of the decision-making team and not merely individuals who signed consent forms granting permission for things to be done. She recommended basing informed consent on a two-way exchange of information, rather than on parents being simply informed by surgeons. Moreover, in this manner, surgeons can also learn from families.

The following study was designed to investigate the problems inherent in the communication between surgeons and surrogates in the domain of informed consent. More specifically the dual purpose was:

  1. To determine how surgeons communicate information, to obtain an informed decision, to those individuals (hereafter referred to as caretakers or surrogates) who provide proxy consent on behalf of children who are legally incompetent; and
  2. To investigate how that information is received and processed by the surrogates who have the responsibility for making treatment decisions for children who are legally incompetent.

    MATERIALS AND METHODS
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Abstract
MaterialsMethods
Results
Discussion
Conclusion
References

Study Participants

The study participants for this study were 20 English-speaking parents, or legal guardians, of children undergoing surgery in an urban pediatric teaching hospital (McGill University Health Center-Montreal Children's Hospital), and 5 male, English-speaking pediatric surgeons in the same institution. All children in the study were <14 years old except for 1 patient who was a 19-year-old mentally retarded individual and, therefore, subject to the same rules of law as any other incompetent child. The study participants who met the surgical inclusion criteria discussed below, and who professed a willingness to take part in the study, were identified by the participating surgeons. They were subsequently contacted (M.L.) to confirm their willingness.

The surgeons' years of experience ranged from 6 to 32 with a mean of 23.2 years. All surgical specialties, aside from urology, were represented.

Surgical Inclusion Criteria

Both elective (such as tonsillectomies and adenoidectomies) and urgent procedures were eligible for inclusion. Although no urgent cases were referred for inclusion, both high- and low-risk procedures were included. Risk and urgency were determined by the surgeon.

Surgical Exclusion Criteria

The following types of surgical procedures were excluded from this study:

  1. Emergency room interventions. These, for the most part, do not require consent, and it is also doubtful whether, under such emergency situations, the surgeon or the surrogate would have had either the time, or the inclination, to be part of a study.
  2. Procedures with guarded prognosis. Situations in which it would have been impossible for the surgeon to predict, with any degree of accuracy, the eventual outcome of the surgery. Although the very uncertainty of these situations is consistent with an analysis of the communicative process, their study would entail a different methodology than that used in this investigation.
  3. Serial procedures. These can extend over many months, and even years, before the final outcome can be determined.
  4. Malignancies. These are often investigative and exploratory, as opposed to curative.

Procedures

The study had the approval of the ethics committees of both the pediatric teaching hospital and the university with which it is associated. Those surgeons who agreed to participate, signed a consent form, and were asked to identify those patients who fell into the inclusion criteria.

Taping of Conversation With Surrogate The surgeons initially informed the surrogates of the child about the research and solicited their participation. If, and after, they consented to be part of the study and signed the consent form, the surgeon taped the conversation with the surrogates during which the surgical procedure was explained, regardless of whether or not the surrogate consented to the surgery. In this study, there were no instances in which the surrogate did not consent. This tape was later retrieved by the investigator and transcribed by a person having no interest in the outcome of the research. The transcript of the tape was not seen by the investigator until after all the questionnaires had been administered. Subsequently, these tapes were coded. These will be later discussed in detail.

Interviews With Surgeons and Surrogates Both surgeons and surrogates underwent a semistructured interview7 twice---once before surgery, and again, 2 to 4 weeks after the child's surgical procedure. The timing of the second interview was chosen to accommodate parents of children who reside in the Artic, because they tend to return home within 1 month and are not available for interviewing after their departure. These interviews were conducted by a trained psychologist, mostly by telephone with surrogates and face-to-face with surgeons. The questions posed during these interviews were structured to elicit information on the various complexities involved in the communication process between a surgeon and a surrogate. More specifically, at that point when the surrogate is required to make an informed decision relative to a surgical intervention that is to be performed on a patient for whom the surrogate has legal responsibility for decision-making. Specific emphasis was placed on the following issues:

  1. Are there general variables, or a profile of variables (eg, education, occupation) which seem to be related to the manner in which individuals decide about a proposed treatment intervention?
  2. What personal variables (eg, understanding, sense of involvement) of the participating surrogates influence the direction in which they decide?
  3. What general factors (eg, surgeon's manner, speech patterns) in the interview are significantly related to the perception of the process?
  4. What, if any, identifiable lay influences (such as friends and family members who are not involved in health care provision) play a role in the decision-making process of the surrogate?

These questions were partly based on:

  1. Previous work questioning the understanding of patients when signing for informed consent4,8,9;
  2. The assumption that surrogates might consult other nonmedical individuals (eg, friends, families, and so forth) before making the decision on whether to consent to surgery;
  3. Sherlock's10 comment that essential to the process of entrustment is the involvement of the patient in the illness, its proposed therapy, and its prognosis; and
  4. The observation of Edwards and Yahne11 that providing both too many or too few details could lead to inadequate consent.

There were 2 sets of questionnaires used in the semistructured interviews. The first set of questionnaires, used in the interview before the procedure, was designed to elicit information pertaining to the following questions:

  1. What the surgeon understood the surrogate to have said;
  2. What the surrogate understood the surgeon to have said;
  3. What each believed she/he communicated (ie, surrogate to surgeon, surgeon to surrogate);
  4. What each attempted to communicate (ie, surrogate to surgeon, surgeon to surrogate).

The second set of questionnaires, used in the interview after surgery, addressed the following issues:

  1. Whether the eventual outcomes of the surgical intervention were expected by the surrogate;
  2. What part (or parts) of the information provided by the surgeon was used by the surrogate to make the decision;
  3. What lay influences were brought to bear in the decision-making process (ie, in deciding to permit or not permit surgery);
  4. Whether the amount of information provided was too much, too little, or basically sufficient; and
  5. Whether the surrogate accepted ownership of, or personal involvement in, the decision.

In both sets of questionnaires all attempts were made to pose parallel questions as much as possible. That is to say, the questions were ordered, phrased, and presented to both the surgeon and the surrogate in the same manner so as to elicit comparative information on the same variable. A decision was made that should any surrogate not comprehend any question after 3 attempts on the part of the interviewer to clarify it, then that study participant would be eliminated from the study. One surrogate was removed for this reason.

Coding of Interview Data Once all necessary information had been collected, 2 of the authors (M.L. and L.C.L.) created the categories necessary for the encoding of the data to classify the responses contained in the 2 sets of questionnaires and on the audio tapes. From the taped consent interview between the surgeon and the surrogate, the procedures were classified as just surgery; surgery with a general description, in which the type of procedure is explained without specifics as to the body site and how the procedure is done; and surgery with a definitive description including the body site and how the procedure is done. From the surrogate's preoperative interview with the investigator, the perceived benefits of the procedure were coded as being psychologic, physical, financial, or any combination of the 3. The responses obtained in the interviews were then measured up against these categories to determine the extent to which surgeons, and surrogates, recalled what had indeed transpired during their tape-recorded interview.

The 2 coders each analyzed the data, separately, and then met to compare the results. With the exception of 1 question concerning the surgeon's comprehension of the surrogate's concerns, there were no discrepancies. After discussion with 2 disinterested parties (a physician and a nurse), the 2 coders, individually, reanalyzed the question. On reexamination the questions were found to be analyzed in the same manner.

Data Analysis

The statistics used to analyze these data were descriptive in nature. The decision to use this method of analysis was based on the following considerations:

  1. This study focused on the relationship within surrogate-surgeon dyads, which therefore, limited it to an almost single-subject study;
  2. Large numbers of dyads were not obtained because such would have required not only exorbitant amounts of time, but they would also have been very difficult to obtain;
  3. The nature of these data and the purpose of the study (which was aimed at discovering trends within clinical situations) do not lend themselves to quantitative manipulations.

Basic statistical analyses were performed on all the variables used in the study to produce frequency tables. Then, to determine the concordance of surgeons and surrogates relative to the recall of their interaction, cross-tabulations were performed using the frequency tables mentioned above. Statistical calculations were conducted using Statistical Package for the Social Sciences (SPSS, Chicago, IL).

    RESULTS
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Abstract
MaterialsMethods
Results
Discussion
Conclusion
References

All surrogates spoke English fluently, either as a mother tongue or as a second or third language. Age, as a measure, was only available for 17 surrogates. These ranged in age from 26 to 48 years, with a mean of 34 years. Of the 17 surrogates for whom responses for gender were obtained, 15 were female, and 2 were male. Educationally, 6 of the surrogates possessed university degrees, 7 possessed collegiate diplomas, 8 had completed high school, and 1 had stopped at the grade-school level. In terms of occupation, 2 occupied clerical positions, 3 worked in technical fields, 2 were managers, 6 were professionals, 3 were homemakers, and 1 was unemployed.

None of these demographics was shown to influence the perceptions of the surrogates on any of the variables, neither did they seem to affect the manner in which the surgeons interacted with the surrogates.

Presurgical Data

The patients in the study were 11 males and 9 females with ages which ranged from 1.4 months to 19 years, producing a mean of 6.7 years. However, when the age of the 19-year-old patient was removed from the equation, the mean was reduced to 5.9 years. The diagnoses, according to the taped interview, and the recall of both the surrogate and surgeon are listed in Table 1. There was concordance for diagnosis between the surrogates and surgeons.

                              
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TABLE 1
Presurgery Diagnoses as Coded From Taped Conversations of Surrogates and Surgeons and as Recalled by Surrogates and by Surgeons

Only 3 of 17 surrogates could recall that the surgeon had dwelt on specifics of the procedure during the interview. Of the remaining 14, 7 recalled only that a surgical intervention was to occur. More specificity of procedure was provided on the tape than either the surrogate or surgeon could recall, with only 4 of 15 available surrogate-surgeon dyads agreeing on their perception of the depth of detail.

Three of 17 surrogates perceived that the proposed intervention would put the child's life in danger, although 1 surrogate was unsure. Whereas in 3 of 15 cases the surgeons classified the procedure as high risk, only 1 procedure was viewed by the surgeons as life threatening.

Two surrogates could not recall what had been told to them concerning benefits and expected outcomes from the proposed procedure. Fifteen surrogates believed that some of the physical benefits had been omitted. Likewise, in 15 cases, surgeons were of the opinion that some of these benefits may not have been adequately communicated.

In 14 of the 15 cases valid for inclusion in the cross-tabulation of the category pertaining to the surrogates' declared understanding of the information, and that of the surgeons' perception of the surrogates' understanding of the information given, both surgeon and surrogate agreed that there was understanding. One surrogate declared uncertainty, although the surgeon thought that the surrogate had understood.

The surgeons were asked to state the basis of their belief of the surrogate's understanding, or lack thereof, of the proceedings. In 13 cases, the surgeons believed that the questions asked, or comments made, by the surrogate indicated a high degree of understanding, whereas in 1 case the surgeon was unable to provide a response.

Fifteen of the 17 surrogates believed that the surgeons treated them as partners in the interchange, but 1 did not feel this way, and 1 was uncertain. Although all surrogates were in accord with the proposed surgery, there were differences in the reasons provided for this accord. For example, some surrogates gave reasons that were related to the status of the surgeon; others used information from other sources, such as other health care professionals, which was combined with the information from the surgeons. Yet others based their decision on entirely different criteria. These reasons, from the perspectives of both surrogates and surgeons, are shown in Table 2. A cross-tabulation indicated that there were only 2 cases in which the surrogate and surgeon agreed on the surrogate's reasons for agreeing to the surgery.

                              
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TABLE 2
Reasons Given by Surrogates and Surgeons for Surrogates' Agreement With the Suggested Surgery

Postsurgical Data

Although all surgeons viewed the surgery as being successful, 1 surrogate did not know whether or not it had been. None of the surgeons reported having had any unexpected results from the surgery. However, 4 out of the 12 surrogates responding to this question reported that they had. Of those 4, 1 was related to the anesthesia and 3 were reported as being unexpected aftermaths of surgery (for example, surprise at seeing children hooked up to tubes in the postoperative period). Of these 3, 1 was a positive unexpected result, with the child making a faster than expected recovery.

With the exception of 1 case, in which the surgeon reported not knowing, all the surgeons stated that the surrogates had not been influenced by anyone else---other than the surgeon---in coming to a decision concerning whether or not to have surgery performed on their child. However, 6 out of 12 surrogates reported having consulted with, and been assisted by, others in coming to this decision. However, only 5 out of the 6 identified those others (Table 3). These others provided a variety of assistance to the surrogates ranging from authoritative, in the case of a shaman, to testimonial and supportive, in the case of an individual whose child had had a similar operation.

                              
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TABLE 3
Influences Used by Surrogate, Other Than Surgeon, in Deciding Whether to Proceed With Surgery

Three surrogates believed that the information provided by the surgeon was insufficient. The others were satisfied and none thought it was too much. In 11 of the 12 cases, the surgeons believed that they had provided sufficient information and 1 reported not knowing.

    DISCUSSION
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Abstract
MaterialsMethods
Results
Discussion
Conclusion
References

The results have not only demonstrated the importance of the role of communication within the surrogate-surgeon dyad but, more importantly, the manner in which psychologic variables such as expectations and the perception of both the surrogates and the surgeons influence the amount of information which is proffered and the manner in which it is received. Perception was also a major contributing factor to the surrogate's sense of involvement in the process, feelings of being respected, and willingness to express fears or dissatisfaction. Similarly, the surgeons' perception of the process led them, in some instances, to assume a level of identification with the surrogates which was not reflected in the surrogates' account of the interaction.

The study also demonstrated that surrogates may consult a wide range of individuals, including the sages of their cultural communities, before coming to a final decision about whether or not to proceed with surgery. Peradventure, this will become a more widespread norm as the population becomes more diverse. It was also shown that not only do surrogates define dangerous procedures differently from surgeons, but even in those cases in which individuals have personal knowledge of a surgical procedure, the comprehension of such knowledge may be altered when they are required to make decisions on behalf of others.

Only 2 out of 17 surrogates were able to speak with any specificity about the surgery to be performed on their child. This is coupled with the fact that when one listens to the taped conversations, more specificity is provided than either the surrogate or the surgeon recounted in the face-to-face interview. As far as the surrogates are concerned, it may be that knowing that surgery would be performed was of more importance than being fully acquainted with the details.

Despite the lack of specific recall in regards to the surgery, both surgeons and surrogates displayed, in most instances, high comprehension of what the other was attempting to convey. This would suggest the possibility that individuals tend to pay greater attention to the gist of what is being said than to the specifics of the message (except when those specifics are somehow out of the ordinary), even when that message is concerned with the health of someone for whom they must make decisions. It may also be a variation of other reports10,12,13 which have shown that some patients do not wish to be overly involved in their own treatment, preferring instead to devolve the decisions to the surgeons.

Another possibility is that the surgeon and surrogate had, by the time of the taped interview, established a trusting working relationship which would, presumably, allow each to be open to high levels of comprehension. This theory is supported by Gibb's14 observation that the greater the levels of trust, the more individuals tend to be open to each other's perspectives. Moreover, it is important to point out that each of these interviews represents a single point in the ongoing relationship among the doctors, patients, and surrogates and, therefore, one should not assume that these interviews were the first or only point of contact. Given the above observation, it should, moreover, not be construed that the interview used in this study is the only time in which the procedure was explained to the surrogate. As a matter of fact, several surgeons went to great lengths to point out that although the signing of the consent constitutes a single event, the obtaining of such consent is a process which may occur throughout several meetings.8,12

For example, the following exchange occurred between a surrogate and a surgeon for a repeat procedure on a child: Surgeon: "The first question is, do you agree with the   surgery?" Surrogate: "Yes." Surgeon: "And you know all the problems such as   anesthesia and the problems concerning the sur  gery itself?" Surrogate: "Yes." Surgeon: "Okay. And you are in agreement?" Surrogate: "Yes." Surgeon: "Okay."

Despite being provided with details, some patients felt inadequately informed, and obliged to ask for information. Some of this may be because of differing perceptions as to the risk involved with the procedure. Although the surgeon may consider a procedure low risk, fear of all aspects associated with the procedure, including the anesthesia, may alter the surrogate's perspective. For example, 1 surrogate felt unhappy despite a lengthy detailed description of the procedure. However, this surrogate also feared having her child put to sleep. Thus, natural parental anxiety may have overshadowed what was heard during, and what was retained from, the medical conversation. This incident serves to illustrate how important it is for health care professionals to learn how to interpret the mood and reactions of patients, and their surrogates, and to adjust their manner and style to these realities.

In considering what problems could have arisen to the children should the surrogates have refused surgery, both surgeons and surrogates placed an almost exclusive emphasis on physical, as opposed to psychologic, possibilities. However when providing reasons for consenting to the surgery, while physical aspects still predominated, the surrogates tended to place a greater emphasis on psychologic features, sometimes combining them with physical ones. A possible explanation for these differences could be that the event of surgery calls for more emphasis to be placed on physical outcomes whereas the process of surgery allows individuals to take a more all-inclusive view.

The surgeons tended to place greater emphasis on the role they played in the final decision of the surrogate than the surrogate ascribed to them. Surrogates, however, recognized other influences in their decision and pointed out that they tended to seek and gather information from a variety of sources. For example, 1 surrogate received her information primarily from a physiotherapist who was carrying out an open-house demonstration at the hospital, and who told the surrogate that the child "would look less handicapped." Another surrogate of Native descent relied on advice from the Native healer: "The native healer touched her (the child) and said it would be okay. If he had said "no' it would have been "no'. He said it would do her well."

The role of the pediatrician was also mentioned. One surrogate stated that the pediatrician had already provided a full explanation of what was needed to be done and, therefore, all that was required was the technical expertise of the surgeon. Previous experience with the procedure by another family member was also helpful in some instances. Other motivations included the evident physical need for the procedure, or the cessation of teasing by other children. One surrogate went on a fact finding mission, reading journals, speaking with surgeons who had performed the same procedure, physiotherapists who had cared for similar children postoperatively, physicians who provided medical care for the child, and parents of similarly affected children. Finally, family members were also sought out for their support for the decision.

Thus, whereas the technical and medical information provided by surgeons has a great bearing on the understanding of the procedure by the surrogate, the final decision to proceed, or not, with surgery would seem to be based on a constellation of factors not necessarily related to the surgeon.

Surrogates were asked to comment on their sense of involvement in the consent process. Most individuals indicated that they felt involved. One surrogate felt more involved because she had finally found a surgeon who agreed to perform the cosmetic procedure that she desired for her child. Moreover, because the surgeon was positive about the outcomes, the surrogate was also positive, especially because the surgeon was "doing something that others had refused to do." Another surrogate felt involved and well treated because of previous experiences with the institution. It would thus seem that surrogates' feelings of involvement and responsibility are based on a combination of the interaction which the individual has with the surgeon and also the experiences provided by the institution.

Although all surrogates viewed the surgical procedures as having been successful, there were those who spoke of unexpected results. Included in these results was the repair of an incidental injury during the procedure that could have affected the outcome of the procedure consented to, if not repaired. Despite the surrogate being a health care professional, and having undergone a similar procedure himself, there was still a feeling that information had been withheld. This incident suggests that parents who are faced with making surgical decisions about their children may not accurately record what they are, or are not told, regardless of their own professional knowledge.

Another unexpected result was the postoperative condition of the child. One surrogate spoke of being frightened when seeing the child in the recovery room "plugged into tubes and swollen." According to the surrogate, she had no idea that this would have been the case and was of the opinion that had she been shown a model by the occupational therapy department, she would have been better prepared. Another surrogate viewed the fact that the child was up and about earlier than expected as an unexpected result for which she was not prepared. These findings would suggest that individuals need to be prepared for positive as well as negative results as it is possible that the same psychologic mechanisms are used to prepare the individual for either eventuality.

The quality of time spent during the interview for consent could be affected by the context in which consent was given. For example, 1 surrogate had the perception of being pressured because, according to her, she was presented with new information, and asked to consent to it, the night before surgery. She was also upset because she was provided with that information while standing in a corridor. According to her, "He didn't even invite me into his office." It would seem, therefore, that a large percentage of the dissatisfaction of this surrogate comes from the perception that not enough time was spent, by the surgeon, providing new information. Moreover, the surrogate seems to have been insulted by the use of the corridor for the discussion. Of interest is the fact that the comprehension of both surgeon and surrogate had been rated as high by the coders. Furthermore the surgeon's explanations were rated as being very high on specificity, the tape transcript producing 6 pages of single-spaced typewritten pages, with most of the talking provided by the surgeon. Except in those instances in which specific questions were posed to the surgeon, the surrogate's main contributions to the discussions were "right", "okay," and "yes." In addition to inviting comment after almost every statement with the question "okay?," there were also several occasions in which the surgeon specifically inquired if the surrogate had any questions. Given the surgeon's attempts at involving the surrogate in the process and the surrogate's responses, it would seem that the surrogate's distress was caused less by the explanations provided by the surgeon, and more by her perception of how she believed she was treated.

During the course of this study, we remained aware of the potential for investigator bias as identified by Locke, Spirduso, and Silverman.15 This bias would have occurred had the investigators allowed preconceived notions about the communication styles of physicians, and surrogates' reaction to them, to influence not only the manner in which the data were gathered, but also the interpretation of them. Therefore, to reduce this possibility to a minimum, all sensitive impressions were cross-checked with colleagues.

As stated by Borg and Gall,7 studies using interview designs are particularly susceptible to response effects. To reduce these to a minimum, questionnaires were conducted in as nonthreatening an environment as possible, and procedures used in conducting the study such as the wording of the questions, explanation of requirements, length of interview, place of interview, and so forth, were taken into consideration and frequent cross-checking was conducted with colleagues, surgeons, other health care professionals, and nonacademics. This is in accordance with the view put forth by Borg and Gall7 which suggests that the best way to address these issues is to discuss the procedures with respondents from the target populations.

    CONCLUSIONS
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MaterialsMethods
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Discussion
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There are several proposals that arise from our findings, although further investigation would be required to verify their utility:

  1. Generally speaking, an increased use of visual aids and models may be helpful, because some individuals possess greater visual processing skills than auditory ones. Moreover, it is possible that individuals will display greater recall if they view something than they will if it is merely explained to them.
  2. If the patient, in the immediate postoperative period, will have drains attached or be intubated, this should be discussed at the time of consent. However, because people tend to recall only the important points, it could be reiterated just before the patient enters the operating room.
  3. Surgeons might consider preparing parents, in principle, for the upcoming discussion with anesthesia because, despite the existence of separate consent forms for anesthesia, it would seem that surrogates want this information from surgeons.
  4. It should be borne in mind that although the content of the surgical interview is important, the site and timing in which the information is transmitted may have negative unexpected or unanticipated effects on families. Furthermore, if a location other than the surgeon's office (such as a hallway) must be used as a site to transmit information, the surgeon may want to acknowledge it and apologize for any discomfort it may cause. Such acknowledgment may serve to alleviate feelings of anger and suspicion of not being treated as an equal.
  5. Surgeons could consider asking the individuals to repeat what they understood from the conversation, pose leading questions, or a combination of both. Merely asking surrogates if they have any questions may not be sufficient as they may be of the opinion that their questions could be branded as "stupid". Moreover, they may be intimidated by the surgeon's status, or they may truly not have understood and, therefore, be unable to pose appropriate questions.
  6. Surgeons may want to consider, as much as possible, personalizing the information that they provide to caretakers. It is important to be aware of the fact that providing an individual with a verbatim explanation which was given to other parents may be dissatisfying because the surrogate may not feel as though she/he is being treated as an individual, but merely being processed as one of many.
  7. When surgeons are conducting a conversation in which the proposed surgery will occur on the following day (especially if this is new information), it may be helpful to start the conversation with this fact. In this manner, the surrogate will then be able to place what follows into context.

Limitations of the Study

The small sample size can make generalizations difficult. Although the results of this study may be limited to the pediatric setting, it may have relevance to situations in which proxy consent is required for those unable to provide consent themselves, such as may be the case with the infirmed elderly. A larger sample size may confirm our initial impressions, and allow us to generate more specific hypotheses, such as modalities of information transmission.

    ACKNOWLEDGMENT

We thank Dr Socrates Rapagna for his assistance with statistical analysis.

    FOOTNOTES

Dr Lands is a Clinical Investigator with the Fonds de la Recherche en Santé du Québec.

This article is based on the doctural thesis of the first author.

Received for publication Dec 2, 1998; accepted Jun 18, 1999.

Reprint requests to (M.L.) Department of Counselling Psychology, Faculty of Arts and Science and Pediatrics, John Abbott College, 21275 Lakeshore Rd, St Anne de Bellevue, Quebec. E-mail: myrnalashley{at}johnabbott.gc.ca

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Abstract
MaterialsMethods
Results
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References
  1. Cassileth BR, Zupkis RV, Sutton-Smith K, March V Informed consent---why are its goals imperfectly realized? N Engl J Med. 1980; 302:896-900 [Abstract]
  2. Korsch BM, Gozzi EK, Francis V Gaps in doctor-patient communication. 1. Doctor-patient interaction and patient satisfaction. Pediatrics. 1968; 42:855-871 [Abstract/Free Full Text]
  3. Valitutti RF, Drutchas GG. Hospital law: theory and application. In: Troyer GT, Salmon SL, eds. Handbook of Health Care Risk Management. Rockville, MD: Aspen Systems Corp; 1986
  4. Byrne DJ, Napier A, Cuschieri A How informed is signed consent? BMJ. 1988; 296:839-840
  5. Buchanan AE, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge, MA: Cambridge University Press; 1989
  6. Alderson P. Choosing for Children: Parents' Consent to Surgery. Oxford, UK: Oxford University Press; 1990
  7. Borg WR, Gall MD. Educational Research. 5th.ed. New York, NY: Longman; 1989
  8. Lidz CW, Appelbaum PS, Meisel A Two models of implementing informed consent. Arch Intern Med. 1988; 148:1385-1389 [Abstract]
  9. Somerville MA. Structuring the issues in informed consent. Mcgill Law J. 1981;740-808
  10. Sherlock R Reasonable men and sick human beings. Am J Med. 1986; 80:2-4 [Medline]
  11. Edwards WS, Yahne C Surgical informed consent: what it is and is not. Am J Surg. 1987; 154:574-578 [CrossRef][Medline]
  12. Waugh D The dilemma of informed consent. CMAJ 1986; 135:514 [Medline]
  13. Strull WM, Lo B, Charles G Do patients want to participate in medical decision making? JAMA. 1984; 252:2990-2994 [Abstract]
  14. Gibb JR. Trust---A New View of Personal and Organizational Development. Los Angeles, CA: The Guild of Tutors Press; 1989
  15. Locke FL, Spirduso WW, Silverman SJ. Proposals That Work. Newbury Park, CA: Sage; 1990

Pediatrics (ISSN 0031 4005). Copyright ©2000 by the American Academy of Pediatrics



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