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Communicating medical bad news: Parents' experiences and preferences
Communicating medical bad news: Parents" experiences and preferences M i c h a e l C. Sharp, MD, R o n a l d P. Strauss, DMD, PhD, a n d Sharon C l a i r e Lorch, MSW From the Department of Pediatrics, University of North Carolina at Ch~apel Hill School of Medicine, and the Departments of Social Medicine and Dental Ecology, University of North Carolina at Chapel Hill School of Dentistry
Parents (N = 189) of children enrolled in 15 developmental day care centers completed questionnaires that examined the experience of being told bad news and elicited preferences for physician behavior in a hypothetical situation (communicating the diagnosis of Down syndrome). Parents, in comparison with their experiences, preferred (p <0.001) more communication of information and feelings by their physician. Their strongest preferences were for physicians to show caring (97%), to allow parents to talk (95%), and to allow parents to show their own feelings (93%). They wanted physicians to share information (90%) and to be highly confident (89%). Most parents (87%) desired parent-to-parent referral, but only a few (19%) were referred. We conclude that there is a difference between what parents experience and what they desire in physicians who communicate bad news. Physicians control the interaction and are highly confident, but parents especially value physicians who show caring and allow parents to talk and share their feelings. (J PEDIATR1992;121:539-46) Physicians can remain objective and professional and still impart to others some very basic human elements: kindness, sympathy, empathy--and, above all, never, never try to take away faith or hope.--47-year-old mother/nurse of 19-year-old man with severe brain damage Numerous authors have focused on the telling of medical bad news, 1,2 and some have suggested that it elicits an overall negative response because of its intrinsic emotional difficulty. In testing this hypothesis, Cunningham et al. 3 found that parents appreciated an "ideal" approach and could distinguish between that and their own negative recollections. Cunningham and Sloper4 studied parents of children with Down syndrome and determined that parents wanted to be given the diagnosis in a realistic, sympathetic, and positive manner. The timing of imparting information was found to be critical; parents found it difficult to absorb anything but Submitted for publication Jan. 28, 1992; accepted April 22, 1992. Reprint requests: Michael C. Sharp, MD, University of North Carolina School of Medicine, CB No. 7340, Division of Community Pediatrics, Chapel Hill, NC 27599-7340. 9/20/38811
the most basic information at the time of diagnosis. The majority of parents wanted to be told of the diagnosis (even if only a suspicion) within the first 24 to 48 hours, and requested later opportunities for more intensive discussion and practical information on how to help their child. Parents wanted to be given bad news together, in a private setting, and to be able to be alone together afterward. They wanted to be able to be with their child when they are told or immediately thereafter. The few parents who were given the opportunity to meet other families of children with similar disabilities appeared to have made the best adjustment; however, about one third of the parents did not feel ready to meet other parents until several months after the birth. According to Quine and Pahl, 5 parents value a sympathetic and caring approach by physicians and say they want to be given full information about the child's condition. A high degree of physician control of the interaction was often found to be a source of parental dissatisfaction. Svarstad and Lipton6 found parental ability to accept the diagnosis of mental retardation to be dependent on clear and frank professional communication. Lynch and Staloch 7 suggested that parents want to know how children will function in the home, strategies for facilitating growth and
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development, referral to community resources, and suggestions on how to inform friends and family. They found that parents wanted more information from their physician than was provided. Most parents reported that the early advice given to them by physicians concerning the developmental potential or future employability of their child with Down syndrome had been too pessimistic or gloomy, and often this was a source of parental dissatisfaction.8, 9 The literature does not provide insight into specific factors that may influence parents' memories of being told bad news or their degree of satisfaction with the experience, nor does the literature indicate what constitutes caring attributes or behavior in this setting. Such information should assist in the preparation of physicians for delivering bad news to families. Although social class and socioeconomic factors have been discussed as potentially influencing this communication,9, 10 little is known about how these influences modify parental experiences and preferences. The purpose of this study is to understand these influences and to delineate in detail the physician behaviors that parents have experienced, and those which they desire, in the telling of bad news. METHODS Data collection. A questionnaire was developed to record how parents of children with developmental disabilities remember the experience of being told the diagnosis of their child's condition. The questionnaire also assessed parents' perspectives on how the telling of bad news might be done ideally and what parents believe is common medical practice. The dimensions of physician behavior chosen for study were derived from observations of unrehearsed videotapes of 48 pediatric residents practicing the telling of bad news to actor/parents. In these videos, parents were informed that their newborn infant had Down syndrome. The tapes were viewed by a group of physicians and social scientists (medical sociologist, family physician, pediatrician, social worker, medical anthropologist, and special educator) who selected nine tapes that demonstrated representative approaches to this physician-patient encounter. These tapes were differentiated by the degree of control and the amount of caring displayed by the resident. The nine tapes were shown to groups of parents of children with developmental disabilities, who reacted to the content and discussed the behaviors that differentiated the residents. On the basis of their reactions, a list of important behaviors relative to the telling of bad news was genemt.ed. This process resulted in the selection of the following variables for study: 1. Degree of physician control of interaction 2. Time needed for physicians to "get to the point" 3. How much physicians care about parents" feelings 4. How much physicians allow the expression of parents" feelings
The Journal of Pediatrics October 1992
5. 6. 7. 8. 9. 10.
Physicians' level of confidence in this setting How much physicians show their own feelings How much physicians permit parents to talk How much physicians try to make the parents feel better Amount of information physicians give to parents How thoroughly physicians describe the likelihood of mental retardation
The survey's self-administered questionnaires were pretested with 16 parents in a Down syndrome support group to confirm the relevance of the content and determine whether such a self-administered instrument was sensitive to differences in perspective or preferences. Modified Likert scaling was chosen to allow for five-point responses to all queries. Another focus group (n = 20) in a group for parents of children with developmental disabilities utilized a preliminary questionnaire-rating mechanism and demonstrated their ability to respond on the Likert five-point scales. Wording and content were refined on the basis of their feedback. After the questionnaires were presented to a statewide meeting of directors of day care centers for children with developmental disabilities, the directors gave additional comments on the questionnaire. The survey instruments were divided into three parts: ratings of how most physicians communicate, parents' ratings of experiences with their own child, and parents' preferences for how a physician should respond in a hypothetical situation (informing parents of a diagnosis of Down syndrome). The tables presented in this article express the five-point Likert scale of parent ratings in trichotomized form (collapsing "somewhat low" and "very low" ratings into "low", and similarly for "high"; the middle category of "neither high nor low" remained unchanged). However, in the statistical analysis, we used the five-point scale to compute means and perform t tests. Social and demographic data were also collected. Many respondenSs used the comments section of the questionnaire to describe their experiences or preferences in greater detail. The parent quotes in this article were extracted from that section. Sample characteristics. The sample studied was of parents who have children in developmental day care centers in North Carolina; all had experienced the communication of bad news about their child. To reach these parents, we contacted the directors of such centers at a statewide meeting and enlisted their participation. Of 22 developmental day care centers sent research materials, 15 (68%) participated. These centers had a total enrollment of 566 children. The participating centers were sent questionnaires, and their directors were asked to distribute and collect them from parents and return them to the investigators. One hundred eighty-nine questionnaires (33% response rate) were received, the mean being 12.6 responses per center.
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The sample was composed primarily of mothers and was largely white (Table I). Almost half of the sample had 12 or more years of education, and approximately one in five had completed college. The median age for parents was 31 years. At the time of the diagnosis, one (22%) of five parents was single. One fourth of the total sample had one child (26%), an additional 40% had two children, and 34% had three or more children. Most parents were able to specify their child's diagnosis (94%); of these, many (59%) reported a single diagnosis for one child. Eleven percent indicated that they had more than one child with special needs, although their reporting was asked to be limited to the child enrolled in the developmental day care program. Almost one in three of the children in this study (29%) has multiple disabilities. For the children with one disability (n = 105), the sample included children with mental retardation/developmental disability (35%), cerebral palsy (30%), Down syndrome (14%), other genetic syndromes (10%), and other disabilities (11%). Parents were asked to remember when they were told about their child's condition, and to indicate how the doctor acted. Many parents were told of the diagnosis at the time of their child's birth (39%); many others learned of the diagnosis during the first year of life (37%). Twenty-four (13%) parents learned of the diagnosis when their child was between 1 and 2 years of age; only 21 parents (11%) received the diagnosis after the child was 2 years of age. An examination of the effect of the child's age at diagnosis and of the elapsed time between diagnosis and questionnaire suggested that these factors did not significantly influence parental responses in this study. RESULTS
Parents' experiences of being told the diagnosis of their child's condition. The findings relative to parents' experiences are presented according to three dimensions of professional behavior plus information concerning socioeconomic influences and referrals to other parents. I am very pleased with my children's doctor. He has been their doctor since birth, and he really gets to the point when he finds something and he gives me a chance to talk and ask questions, and even comment on some little thing that my children may have done or said. He's really got a senseof humor, too, and I think that helps lighten the mood under most circumstances. I wouldn't trade my children's pediatrician for anything.--26-year-old mother of a 7-year-old child with mental retardation The doctor came into the recoveryroom and all he said was, "Hey, man, I hate to lay this thing on you now, but your child is Down syndrome. She probably won't even be able to do any more than dress herself." I do know I will never forget the way he told us. It is burned into my memory forever.--39-year-old mother of a 4-year-old girl with Down syndrome Among the parents (n--- 156) who specified whether
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Communicating medical bad news
Table I. Sample characteristics Characteristic
Race White African-American Other Education --<9 yr 10-12 yr >12 yr Gender Women Men Age of parent <25 yr 25-30 yr 31-35 yr ~36 yr
%
No.
64.9 28.2 6.9
122 53 13
10.9 41.8 47.3
20 77 87
93.0 7.0
174 13
14.0 28.5 26.3 31.2
26 53 49 58
anyone else was in the room at the time of diagnosis, some were alone (30%), some were with their spouse (45%), and some had other persons present (26%). Parents were most likely to be informed by a pediatrician (31%), neonatologist (18%), or another physician (12%); other professionals composed the remainder. Most of the informing professionals .were male (79%). Elements o f interaction
I was never asked how I felt. The whole conversation was about Travis.--39-year-old mother with 22-month-old son who is hearing impaired and has a speech delay Most parents found that the physician had a high degree of control over the interaction during which the family was informed about their child's diagnosis (Table II). Such levels of professional control did not seem to diminish parental perceptions of their ability to contribute to the conversation. Most parents held that the physician gave them a considerable chance to talk. However, fewer than half (47%) of the parents believed that the physician gave them much opportunity to show their feelings. Nearly as many parents (41%) believed that the physician made little effort to make them feel better. When the means of the variables describing the parents' experiences in the interaction were listed from highest to lowest, "doctors' control of conversation" was highest, followed by physicians' "allowing parents to talk" and "show feelings." Efforts to "make the parents feel better" were ranked lower. Information management
I don't want them to unnecessarily scare the hell out of me--but I hate the feeling of being in the dark. Especiallywhen a new problem appears with a medical name a mile long, I don't know the "right" questions to ask.--29-year-old mother of 4-year-old child with spastic diplegia
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II. Row percentages and t test results: P a r e n t a l ratings of dimensions of physician behaviors relative to t h e telling of bad news
Table
Rating of parent experience* Dimensions of physician behavior Elements of interaction MD controls conversation MD allows parents to talk
MD allows parents to show feelings MD tries to make parent feel better Information management Time MD takes to "get to the point" in conveying bad news Amount of information MD gives MD discusses possible mental retardation Professional attributes MD shows caring MD shows confidence MD shows feelings MD makes referral to other parents
Rating of parent preferencet
Low
Not high, not low
High
Mean _+ SD Low
12.1% (22) 27.3% (51)
22.7% (41) 17.6% (33)
65.2% (118) 55.0% (103)
3.89 _+ 1.19
31.0% (58) 37.6% (70)
21.9% (41) 21.0% (39)
47.1% (88) 41.4% (77)
3.27 -+ 1.52
53.8% (100)
20.4% (38)
25.8% (48)
2.44 +_ 1.46
42.0% (77) 40.4% (67)
21.9% (40) 18.4% (26)
36.1% (66) 41.2% (58)
2.83 -+ 1.56
28.8% (54) 19.3% (36) 35.5% (66) (No):~ 81.4% (144)
19.8% (37) 22.6% (42) 25.3% (47) ---
51.3% (96) 58.1% (108) 39.2% (73) (Yes)~ 18.7% (33)
3.35 -2-_1.42
-
-
3.49 +_ 1.49
3.02 -+ 1.52
2.99 -+ 1.59
3.62 + 1.28 3.02 ___ 1.43 --
Not high, not low High Mean +_ SD
5.2% (9) 0.6% (1)
37.2% (64) 4.1% (7)
57.6% (99) 95.3% (162)
0.6% (1) 4.1% (7)
5.9% (10) 17.8% (30)
93.5% (159) 78.1% (132)
61.6% (106)
25.0% (43)
1.2% (2) 3.6% (6) 0.6% (1) 1.8% (3) 6.4% (11) 1.8% (3)
3.83 _+ 1.02
Tests t 0.49
p NS
4.75 _+ 0.53
-10.45 <0.001
4.71 + 0.63
-11.49 <0.001
4.29 _+ 0.98
-9.27 <0.001
13.4% (23)
2.15 +_ 1.22
2.03 <0.05
8.8% (15) 19.5% (33)
90.0% (153) 76.9% (130)
4.69 + 0.71
-14.22 <0.001
4.31 + 0.95
-9.00 <0.001
3.5% (5) 9.4% (16) 25.0% (43) 11.2% (19)
96.5% (164) 88.9% (152) 68.6% (118) 87.1% (148)
4.76 + 0.52
-6.52 <0.001
4.60 _+ 0.76
-8.69 <0.001
4.01 _+ 1.07 t 4.56 + 0.81
-7.34 <0.001 --
--
All variables have been trichotomized, merging a five-point scale into three categories, with the exception of the query about referral to other parents, which was a yes/no response under "Rating of parent experience"; all means and t test results are based on the 5-point Likert scale. Values in parentheses represent number.
NS, Not significant (p >0.05). *"Parent experience" refers to parents' being told about the diagnosis of their child's condition. t"Parent preference" refers to parents' preferences for physician behaviors in telting bad news. :~Yes/no response was given. Questions to the doctor and requests for literature on medication and diagnosis seemed resented by the doctors.--41-year-old mother
of faith and knowledge.--29-year-old mother of twins 289years old
with cereb!Mpalsy (one twin, with Down syndrome, died)
of l O-year-old child with profound mental retardation and seizures T h e m a j o r i t y of parents (54%) reported t h a t t h e physician took little time "to get to the point" in conveying t h e news of their child's diagnosis. The speedy dispatch of information was not reported by one fourth of the sample, suggesting t h a t a subgroup of physicians withheld full disclosure for some time. Forty-two percent of the parents reported t h a t they h a d received little information from the physician at this encounter. In this sample of parents, less 9 ,~ . . t h a n h a l f (41%) h a d been gtven m u c h m f o r m a t t o n a b o u t the likelihood of m e n t a l retardation at the time of this encounter.
Professional attributes Our children's neonatologist was very supportive and caring. He had lost a son 2 years earlier. I believe this was the reason for his tremendous understanding. He helped us to have a great amount
When the doctor told us what she had, he told us like if he were filling out a prescription for us. Not in a cold manner, but like an everyday thing--like putting on socks or shoes. Here you are, devastated by the news, and he acts like you've known the problem all your life.--24-year-old mother of 3-year-old child with Down
syndrome H a l f of the parents (51%) reported t h a t their physician showed m u c h caring a b o u t how they felt at the diagnostic encounter. M o r e t h a n half (58%) indicated t h a t the physician was very confident in t h a t context. Physicians were less likely to be perceived as showing their own feelings. Indeed, more t h a n a t h i r d (36%) of the physicians were reported to have shown little of their own feelings at the telling of bad news. W h e n professional attributes were listed from highest to lowest means, " d o c t o r ' s confidence" was ranked higher t h a n "showing of c a r i n g " a n d " s h o w i n g of feelings."
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Socioeconomic effects and parental memories. P a r e n t education and race were examined with chi-square analysis to d e t e r m i n e their influence on parental experience. On most of the rating variables there was no significant effect (p < 0 . 0 5 ) of education or race. Significant effects of both p a r e n t education and race were found only on p a r e n t ratings of how m u c h the physician allowed t h e m to talk and how m u c h information he or she gave at the time of diagnosis. P a r e n t s with less t h a n college education (63%) were more likely (p = 0.05) to perceive t h a t the physician gave t h e m a c h a n c e to talk, in comparison with those who had college education (48%). M i n o r i t y parents (69%) were also more likely (p = 0.05) t h a n white parents (49%) to feel t h a t the physician gave t h e m a chance to talk a t the t i m e of diagnosis. P a r e n t s with less t h a n college education (46%) were more likely (p = 0.03) to perceive t h a t the physician gave t h e m a lot of information t h a n were those with college education (25%). M i n o r i t y parents (56%) were also more likely (p = 0.003) t h a n white parents (26%) to believe t h a t the physician gave t h e m a lot of information at t h e time of diagnosis. P a r e n t education, b u t not race, was significantly associated (p = 0.03) with the physician's show of feelings. Parents with less t h a n college education (47%) were more likely to find t h e physician touched or moved by t h e i r situation, t h a n were college-educated parents (32%). Race, but not p a r e n t education, was significantly related (p = 0.004) to the perception of the physician's a t t e m p t to help the parents feel better. M i n o r i t y parents (61%) were more likely to perceive the physician as trying to help t h e m feel b e t t e r t h a n were white parents (32%). Referral to other parents There was so much negativity thrown at us on top of all the rest of our problems and worries about her. No one told us how much love and happiness she would bring in our lives. What we needed was other people to talk with who had been there, firsthand. Not professionals, but parents--loving, caring people. We didn't meet others until she was about 6 months old. That's a long time to find out that we were not alone. Also that it's not the end of the world to have a special needs child.--36-year-old mother of 6-year-old girl
with chromosomal abnormality P a r e n t s were asked whether " t h e doctor put t h e m in touch with other parents with a child like their own." Few parents (19%) reported t h a t such a referral was initiated. O f the 74 families who learned the diagnosis at the child's birth, only 6 (8%) were referred to another parent.
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Table III. C o m p a r a t i v e r a n k i n g of means Parent experiences*
Parent preferences
1. MD control of conversation 2. MD showed confidence 3. MD allowed parents to talk 4. MD showed caring 5. MD showed feelings 6. MD allowed parents to show feelings 7. MD tried to help parent feel better 8. MD discussed possible mental retardation 9. Amount of information given 10. Time needed to "get to the point" to convey news
1. MD showed caring 2. MD allowed parents to talk 3. MD allowed parents to show feelings 4. Amount of information given 5. MD showed confidence 6. Referral to another parentt 7. MD discussed possible mental retardation 8. MD tried to help parent feel better 9. MD showed feelings 10. MD control of conversation 11. Time needed to "get to the point" to convey news
*Findings regarding parent referrals to other parents indicate that 3% (n = 6) were referred at birth and 15% (n = 27) were referred later, but 81% (n = 144) did not receive referral to other parents with similar children. tThis query was posed only as a Likert scale under parent preferences. every day and know what they can do and cannot do.--24-year-old
mother of a 189
child with cerebral palsy
These data focused on the telling of the diagnosis of Down syndrome; parents were asked to t h i n k a b o u t w h a t the physician's role should be.
Elements o f interaction Show a little more compassion. If I had listened to him, I could have put my daughter in an institution. Today, she walks, eats, laughs,
hugs--loves.--46-year-old mother with lO-year-old child with profound mental retardation In this hypothetical situation, parents ( T a b l e II) preferred a high degree of physician control of the diagnostic encounter a n d interaction (58%). Similarly, they highly desired to be allowed to talk (95%), to show their own feelings (94%), and to be helped to feel better (78%).
Information management The doctor was very caring. He gave us every possible bad thing that could be with our child and then came back with that he wanted our child to make him a liar. I will always greatly appreciate and respect the way in which this doctor informed us of a very serious
situation.--38-year-old mother with 20-year-old child with cerebral palsy I would have liked more information as to what to do next, what to expect.--35-year-old mother of 4-year-old child with Down
P a r e n t a l preferences for how a physician should communicate
syndrome
I feel the doctors, all doctors, should be more willing to listen to what we, as parents, have to say. After all, we are with our children
Parents (62%) preferred t h a t in this situation a physician quickly "get to the point" in conveying the bad news. They
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strongly (90%) indicated a desire for a lot of information at this encounter. Furthermore, parents preferred (77%) being told in detail about the possibility of mental retardation at the first encounter. Professional attributes The doctor simply stated the diagnosis,handed us somepapers with general information,.., told us to institutionalize him, and walked out the door. We would like to have been treated like human beings.--32-year-old mother of 4-year-old child with cerebralpalsy Our doctor that diagnosedour son could not have handled our "bad news" conversation better. He was caring, sympathetic (even tears in his eyes), direct, to the point without rushing. He answered our questions "straight"--no sugarcoating, but not total gloom and doom either.--39-year-old mother with 2-year-old with Cornelia de Lange syndrome Nearly all parents preferred a physician to show a high degree of caring in this setting (97%). Most parents wanted physicians to show strong confidence (89%) and to show much of their own feelings (69%). Socioeconomic influences on parents" preferences. Significant effects of parent education and race as tested by chi-square analysis (p <0.05) were generally limited to the queries about parents' preferences for physicians' information management. Parents with less than college education (97%) were more likely than college-educated parents (82%) to want a great deal of information at the time of diagnosis (p = 0.05). Minority parents were also more likely than white parents to desire a lot of information at this encounter (p -- 0.04). Parents with less than college education (83%) in comparison with college-educated parents (69%) desired much information about the possibility of mental retardation (p = 0.02). Minority parents were similarly more desirous than white parents of such information (t9 = 0.006). Parents with less than college education (17%) (p = 0.04) and minority parents (20%) (p = 0.02) were more likely than college-educated parents (9%) or white parents (10%) to desire a physician to take a long time to "get to the point". Most parents did not want the physicians to delay in telling the bad news. The only other parent preference influenced by parent race (although not by education) was the degree of confidence shown by the physician. Minority parents (95%) had a greater preference than white parents (86%) for their physician to show a high degree of confidence (p = 0.02). Referral to other parents It would have been nice to be put in touch with other parents of a child with Joubert syndrome.--29-year-old mother of a l 6-monthold child with Joubert syndrome On a five-point Likert scale, parents had a strong (87%) preference for physicians to "put parents in touch with other
The Journal of Pediatrics October 1992
parents with a similar child." Few parents (2%) had a low desire for such a referral. Parents' preferences compared with their experience It took a pediatrician, willingto admit the limitations of doctors, willing to cry and share his own feelings with us, to change our minds and seek the second opinion that saved our son's life! He became an equal with us in caring about the future of our child and family.--44-year-old mother of 12-year-old child with spina bifida and hydrocephalus The doctor who first saw Karen's problem was.., so horrible in handling us we tried to not pay his bill! He was terribly abrupt, businesslike,no compassion. I've had many bad experienceswith doctors and rarely have met any who considered parents' opinions valuable. I feel they must have been taught in "med" schools to detach--stay distant and controlling.--37-year-old mother of 5year-old child with autism and mental retardation A comparison was performed between parental experiences and parental preferences (Table II). A significant difference existed for nine of ten comparisons; parents generally prefered more interaction, information, and emotional content than was their experience. Table III shows a comparative ranking of means. The leading parental preferences were to have a physician who shows caring and who allows parents to talk and to show their own feelings. Physician control of the conversation ranked highest in parent memory and nearly lowest in parent preference. In spite of its relatively low comparative ranking, physician control of the interaction was still preferred by the majority of respondents. Parents recall getting relatively little information at the time of their child's diagnosis, but rank this as highly preferred. DISCUSSION This study provides insight into the relative importance of specific physician behaviors in the telling of bad news to parents. Previous studies have identified important features associated ~ t h parental satisfaction with the communication of bad news. 4-9 This study should help physicians understand what behaviors are most important to parents who are hearing bad news. Parental memories may transform the reality of experience, especially given the emotional nature of hearing bad news. It is possible that parents may recollect poor experiences more clearly than positive ones, or that dissatisfied parents are more likely to respond in studies such as this. There was no means in this retrospective study to provide documentation of actual physician behaviors, although we are convinced that parental recollections are a critical outcome measure. The comments and responses from parents indicated that the memories of "being told" are often etched into their consciousness on a permanent basis. Many parents wrote extensive commentaries on the back of the
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questionnaire forms and sometimes expressed the unfulfilled desire to communicate once again with the physician who told them of their child's condition. The response rate to the questionnaire in this study limits the ability to generalize, although the sample provides insights into the experiences of a group of parents. The physician was often perceived as in control, confident, and able to allow the parents to talk, although less likely to allow the parents to show feelings. Parents remember receiving little information at this encounter, including little information about the likelihood of mental retardation. Parents most value the physician's ability to show caring, and to allow time for parents to talk and show feelings. Parents experienced significantly fewer of these desired behaviors in the physicians who told them bad news. Nearly all parents desired referral to other parents, but only one in five had received such a referral. Less educated and minority parents were more likely to report having been given sufficient information and an adequate opportunity to talk during the initial encounter. When asked about their preferences, however, less educated and minority parents desired even more information, compared with others. It is possible that minority parents, or those with less education, more strongly perceive a need for information because they may know less about medical conditions and may have less access to sources of information aside from the physician. Little is known about how physicians are prepared to perform one of their most difficult professional roles, the telling of bad news. Some medical schools v use videotaped role-playing techniques as a training tool, but most medical students learn these skills by either observation or trial and error. Rarely are parents in a position to provide feedback to the conveyer of bad news, because they are generally absorbed in the process. The findings from this study may help inform educators about what behaviors and communicative approaches should be taught to physicians relative to the telling of bad news. Although personality plays a role in the ability of physicians to project to another's situation and then develop a relationship, studies indicate that physicians in training are capable of learning new techniques. 12 Physicians evaluate their effectiveness partly by their ability to heal their patients and make them feel better. Faced with a lifelong diagnosis for a newborn child, the physician may feel ineffectual. Physicians who believe that they cannot help may avoid dealing with the issues or engaging with parents. There may also be a concern that opening communication will encourage an endless demand from the family for support. Physicians may put a disproportionate emphasis on treating the child, rather than on allowing the parents to talk or to reveal their feelings. Physicians sometimes place a high value on intellect and may find it difficult to understand that a cognitively limited child
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may be wanted, may enhance the life of a family, and may lead a worthy life. The crisis of hearing bad news evokes discomfort. The knowledge that bad news is likely to initiate parental exPression of emotions such as crying and anger may make physicians uncomfortable. Physicians may identify with the parents' plight and fear their own emotions. On the other hand, experienced physicians may see so much pain and suffering that they insulate themselves. More needs to be learned about the value system of physicians and how they develop caring attitudes about parental needs. Medical education is generally oriented toward teaching factual and objective material, with less emphasis on emotional and sociocultural content. What factors influence medical students' and residents' abilities to communicate in a caring manner? Are physicians convinced by their training that parental perspectives have importance and can help educate clinicians? Are they encouraged to express their own feelings about their patients? The moment of being told bad news is critical for several reasons. It is the time at which the "ideal" wanted child ceases to exist and the new "special," and often unexpected, child becomes real. At this moment the family's life is changed on a permanent basis. Parents, often young, may lack experience in handling such news, and may feel lost, inadequate, or fearful. This encounter initiates the process of adapting to the new child, and the quality of the interaction may affect how the family "sees" or accepts the child and his or her special needs. The person who tells bad news takes on an important position by virtue of providing the family's introduction to the child's future. If the physician's behavior inspires trust, the family may be able to enter the future more readily. If the physician is perceived as behaving in ways that increase the family's discomfort, then the parents may have difficulty accepting the child and being hopeful. The conveyer of bad news must be skilled at inspiring trust and able to communicate effectively with parents. We acknowledge the insight and assistance of Dr. Susan Schooley and the parent-to-parent groups that participated in the initial phases of this project. We are grateful to the parents who shared their feelingsand experiencesand to the directors of the developmental day care centers that participated. REFERENCES
1. Pueschel SM, Murphy A. Assessment of counselingpractices at the birth of a chilffwith Down's syndrome.American Journal of Mental Deficiency 1976;81:325-30. 2. Gayton WF, Walker L. Down syndrome: informing the parents. Am J Dis Child 1974;127:510-2. 3. Cunningham CC, Morgan PA, McGucken RB. Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable? Dev Med Child Neurol 1984;26:33-9.
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4. Cunningham CC, Sloper T. Parents of Down's syndrome babies: their earlier needs. Child Care Health Dev 1977;3:32547. 5. Quine L, Pahl J. First diagnosis of severe mental handicap: characteristics of unsatisfactory encounters between doctors and parents. Soc Sci Med 1986;22:53-62. 6. Svarstad BL, Lipton HL. Informing parents about mental retardation: a study of professional communication and parent acceptance. Soc Sci Med 1977;11:641-5. 7. Lynch EC, Staloch NH. Parental perceptions of physicians' communication in the informing process. Merit Retard 1988;26:77-81. 8. Springer A, Steele MW. Effects of physicians' counseling on rearing of Down syndrome children. American Journal of Mental Deficiency 1980;85:1-5.
9. Lipton HL, Svarstad B. Sources of variation in clinicians' communication to parents about mental retardation. American Journal of Mental Deficiency 1977;82:155-61. 10. McDonald AC, Carson KL, Palmer DJ, Slay T. Physicians' diagnostic information to parents of handicapped neonates. Merit Retard 1980;20:12-4. 11. Wolraich ML, Albanese M, Reiter-Thayer S, Barratt W. Teaching pediatric residents to provide emotion-ladened information. Journal of Medical Education 1981;56:43840. 12. Wolraich ML, Albanese M, Reiter-Thayer S, Barratt W. Factors affecting physician communication and parent-physician dialogues. Journal of Medical Education 1982;57:63125.
BOUND VOLUMES AVAILABLE TO SUBSCRIBERS Bound volumes of the 1992 issues of THE JOURNAL OF PEDIATRICSare available to subscribers (only) from the Publisher, at a cost of $58.00 for domestic, $78.06 for Canadian, and $74.00 for international subscribers, for Vol. 120 (January-June) and Vol. 121 (July-December), shipping charges included. Each bound volume contains subject and author indexes, and all advertising is removed. Copies are shipped within 60 days after publication of the last issue in the volume. The binding is durable buckram, with the Journal name, volume number, and year stamped in gold on the spine. Ph'yment must accompany all orders. Contact Mosby-Year Book, Inc., Subscription Services, 1 t830 Westline Industrial Dr., St. Louis, MO 63146-3318, USA/800-325-4177, ext. 4351, or 314-453-4351. Subscriptions must be in force to qualify. Bound volumes are not available in place of a regular Journal subscription.
Parents (N = 189) of children enrolled in 15 developmental day care centers completed questionnaires that examined the experience of being told bad news and elicited preferences for physician behavior in a hypothetical situation (communicating the diagnosis of Down syndrome). Parents, in comparison with their experiences, preferred (p <0.001) more communication of information and feelings by their physician. Their strongest preferences were for physicians to show caring (97%), to allow parents to talk (95%), and to allow parents to show their own feelings (93%). They wanted physicians to share information (90%) and to be highly confident (89%). Most parents (87%) desired parent-to-parent referral, but only a few (19%) were referred. We conclude that there is a difference between what parents experience and what they desire in physicians who communicate bad news. Physicians control the interaction and are highly confident, but parents especially value physicians who show caring and allow parents to talk and share their feelings. (J PEDIATR1992;121:539-46) Physicians can remain objective and professional and still impart to others some very basic human elements: kindness, sympathy, empathy--and, above all, never, never try to take away faith or hope.--47-year-old mother/nurse of 19-year-old man with severe brain damage Numerous authors have focused on the telling of medical bad news, 1,2 and some have suggested that it elicits an overall negative response because of its intrinsic emotional difficulty. In testing this hypothesis, Cunningham et al. 3 found that parents appreciated an "ideal" approach and could distinguish between that and their own negative recollections. Cunningham and Sloper4 studied parents of children with Down syndrome and determined that parents wanted to be given the diagnosis in a realistic, sympathetic, and positive manner. The timing of imparting information was found to be critical; parents found it difficult to absorb anything but Submitted for publication Jan. 28, 1992; accepted April 22, 1992. Reprint requests: Michael C. Sharp, MD, University of North Carolina School of Medicine, CB No. 7340, Division of Community Pediatrics, Chapel Hill, NC 27599-7340. 9/20/38811
the most basic information at the time of diagnosis. The majority of parents wanted to be told of the diagnosis (even if only a suspicion) within the first 24 to 48 hours, and requested later opportunities for more intensive discussion and practical information on how to help their child. Parents wanted to be given bad news together, in a private setting, and to be able to be alone together afterward. They wanted to be able to be with their child when they are told or immediately thereafter. The few parents who were given the opportunity to meet other families of children with similar disabilities appeared to have made the best adjustment; however, about one third of the parents did not feel ready to meet other parents until several months after the birth. According to Quine and Pahl, 5 parents value a sympathetic and caring approach by physicians and say they want to be given full information about the child's condition. A high degree of physician control of the interaction was often found to be a source of parental dissatisfaction. Svarstad and Lipton6 found parental ability to accept the diagnosis of mental retardation to be dependent on clear and frank professional communication. Lynch and Staloch 7 suggested that parents want to know how children will function in the home, strategies for facilitating growth and
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development, referral to community resources, and suggestions on how to inform friends and family. They found that parents wanted more information from their physician than was provided. Most parents reported that the early advice given to them by physicians concerning the developmental potential or future employability of their child with Down syndrome had been too pessimistic or gloomy, and often this was a source of parental dissatisfaction.8, 9 The literature does not provide insight into specific factors that may influence parents' memories of being told bad news or their degree of satisfaction with the experience, nor does the literature indicate what constitutes caring attributes or behavior in this setting. Such information should assist in the preparation of physicians for delivering bad news to families. Although social class and socioeconomic factors have been discussed as potentially influencing this communication,9, 10 little is known about how these influences modify parental experiences and preferences. The purpose of this study is to understand these influences and to delineate in detail the physician behaviors that parents have experienced, and those which they desire, in the telling of bad news. METHODS Data collection. A questionnaire was developed to record how parents of children with developmental disabilities remember the experience of being told the diagnosis of their child's condition. The questionnaire also assessed parents' perspectives on how the telling of bad news might be done ideally and what parents believe is common medical practice. The dimensions of physician behavior chosen for study were derived from observations of unrehearsed videotapes of 48 pediatric residents practicing the telling of bad news to actor/parents. In these videos, parents were informed that their newborn infant had Down syndrome. The tapes were viewed by a group of physicians and social scientists (medical sociologist, family physician, pediatrician, social worker, medical anthropologist, and special educator) who selected nine tapes that demonstrated representative approaches to this physician-patient encounter. These tapes were differentiated by the degree of control and the amount of caring displayed by the resident. The nine tapes were shown to groups of parents of children with developmental disabilities, who reacted to the content and discussed the behaviors that differentiated the residents. On the basis of their reactions, a list of important behaviors relative to the telling of bad news was genemt.ed. This process resulted in the selection of the following variables for study: 1. Degree of physician control of interaction 2. Time needed for physicians to "get to the point" 3. How much physicians care about parents" feelings 4. How much physicians allow the expression of parents" feelings
The Journal of Pediatrics October 1992
5. 6. 7. 8. 9. 10.
Physicians' level of confidence in this setting How much physicians show their own feelings How much physicians permit parents to talk How much physicians try to make the parents feel better Amount of information physicians give to parents How thoroughly physicians describe the likelihood of mental retardation
The survey's self-administered questionnaires were pretested with 16 parents in a Down syndrome support group to confirm the relevance of the content and determine whether such a self-administered instrument was sensitive to differences in perspective or preferences. Modified Likert scaling was chosen to allow for five-point responses to all queries. Another focus group (n = 20) in a group for parents of children with developmental disabilities utilized a preliminary questionnaire-rating mechanism and demonstrated their ability to respond on the Likert five-point scales. Wording and content were refined on the basis of their feedback. After the questionnaires were presented to a statewide meeting of directors of day care centers for children with developmental disabilities, the directors gave additional comments on the questionnaire. The survey instruments were divided into three parts: ratings of how most physicians communicate, parents' ratings of experiences with their own child, and parents' preferences for how a physician should respond in a hypothetical situation (informing parents of a diagnosis of Down syndrome). The tables presented in this article express the five-point Likert scale of parent ratings in trichotomized form (collapsing "somewhat low" and "very low" ratings into "low", and similarly for "high"; the middle category of "neither high nor low" remained unchanged). However, in the statistical analysis, we used the five-point scale to compute means and perform t tests. Social and demographic data were also collected. Many respondenSs used the comments section of the questionnaire to describe their experiences or preferences in greater detail. The parent quotes in this article were extracted from that section. Sample characteristics. The sample studied was of parents who have children in developmental day care centers in North Carolina; all had experienced the communication of bad news about their child. To reach these parents, we contacted the directors of such centers at a statewide meeting and enlisted their participation. Of 22 developmental day care centers sent research materials, 15 (68%) participated. These centers had a total enrollment of 566 children. The participating centers were sent questionnaires, and their directors were asked to distribute and collect them from parents and return them to the investigators. One hundred eighty-nine questionnaires (33% response rate) were received, the mean being 12.6 responses per center.
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The sample was composed primarily of mothers and was largely white (Table I). Almost half of the sample had 12 or more years of education, and approximately one in five had completed college. The median age for parents was 31 years. At the time of the diagnosis, one (22%) of five parents was single. One fourth of the total sample had one child (26%), an additional 40% had two children, and 34% had three or more children. Most parents were able to specify their child's diagnosis (94%); of these, many (59%) reported a single diagnosis for one child. Eleven percent indicated that they had more than one child with special needs, although their reporting was asked to be limited to the child enrolled in the developmental day care program. Almost one in three of the children in this study (29%) has multiple disabilities. For the children with one disability (n = 105), the sample included children with mental retardation/developmental disability (35%), cerebral palsy (30%), Down syndrome (14%), other genetic syndromes (10%), and other disabilities (11%). Parents were asked to remember when they were told about their child's condition, and to indicate how the doctor acted. Many parents were told of the diagnosis at the time of their child's birth (39%); many others learned of the diagnosis during the first year of life (37%). Twenty-four (13%) parents learned of the diagnosis when their child was between 1 and 2 years of age; only 21 parents (11%) received the diagnosis after the child was 2 years of age. An examination of the effect of the child's age at diagnosis and of the elapsed time between diagnosis and questionnaire suggested that these factors did not significantly influence parental responses in this study. RESULTS
Parents' experiences of being told the diagnosis of their child's condition. The findings relative to parents' experiences are presented according to three dimensions of professional behavior plus information concerning socioeconomic influences and referrals to other parents. I am very pleased with my children's doctor. He has been their doctor since birth, and he really gets to the point when he finds something and he gives me a chance to talk and ask questions, and even comment on some little thing that my children may have done or said. He's really got a senseof humor, too, and I think that helps lighten the mood under most circumstances. I wouldn't trade my children's pediatrician for anything.--26-year-old mother of a 7-year-old child with mental retardation The doctor came into the recoveryroom and all he said was, "Hey, man, I hate to lay this thing on you now, but your child is Down syndrome. She probably won't even be able to do any more than dress herself." I do know I will never forget the way he told us. It is burned into my memory forever.--39-year-old mother of a 4-year-old girl with Down syndrome Among the parents (n--- 156) who specified whether
54 1
Communicating medical bad news
Table I. Sample characteristics Characteristic
Race White African-American Other Education --<9 yr 10-12 yr >12 yr Gender Women Men Age of parent <25 yr 25-30 yr 31-35 yr ~36 yr
%
No.
64.9 28.2 6.9
122 53 13
10.9 41.8 47.3
20 77 87
93.0 7.0
174 13
14.0 28.5 26.3 31.2
26 53 49 58
anyone else was in the room at the time of diagnosis, some were alone (30%), some were with their spouse (45%), and some had other persons present (26%). Parents were most likely to be informed by a pediatrician (31%), neonatologist (18%), or another physician (12%); other professionals composed the remainder. Most of the informing professionals .were male (79%). Elements o f interaction
I was never asked how I felt. The whole conversation was about Travis.--39-year-old mother with 22-month-old son who is hearing impaired and has a speech delay Most parents found that the physician had a high degree of control over the interaction during which the family was informed about their child's diagnosis (Table II). Such levels of professional control did not seem to diminish parental perceptions of their ability to contribute to the conversation. Most parents held that the physician gave them a considerable chance to talk. However, fewer than half (47%) of the parents believed that the physician gave them much opportunity to show their feelings. Nearly as many parents (41%) believed that the physician made little effort to make them feel better. When the means of the variables describing the parents' experiences in the interaction were listed from highest to lowest, "doctors' control of conversation" was highest, followed by physicians' "allowing parents to talk" and "show feelings." Efforts to "make the parents feel better" were ranked lower. Information management
I don't want them to unnecessarily scare the hell out of me--but I hate the feeling of being in the dark. Especiallywhen a new problem appears with a medical name a mile long, I don't know the "right" questions to ask.--29-year-old mother of 4-year-old child with spastic diplegia
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The Journal of Pediatrics October 1992
II. Row percentages and t test results: P a r e n t a l ratings of dimensions of physician behaviors relative to t h e telling of bad news
Table
Rating of parent experience* Dimensions of physician behavior Elements of interaction MD controls conversation MD allows parents to talk
MD allows parents to show feelings MD tries to make parent feel better Information management Time MD takes to "get to the point" in conveying bad news Amount of information MD gives MD discusses possible mental retardation Professional attributes MD shows caring MD shows confidence MD shows feelings MD makes referral to other parents
Rating of parent preferencet
Low
Not high, not low
High
Mean _+ SD Low
12.1% (22) 27.3% (51)
22.7% (41) 17.6% (33)
65.2% (118) 55.0% (103)
3.89 _+ 1.19
31.0% (58) 37.6% (70)
21.9% (41) 21.0% (39)
47.1% (88) 41.4% (77)
3.27 -+ 1.52
53.8% (100)
20.4% (38)
25.8% (48)
2.44 +_ 1.46
42.0% (77) 40.4% (67)
21.9% (40) 18.4% (26)
36.1% (66) 41.2% (58)
2.83 -+ 1.56
28.8% (54) 19.3% (36) 35.5% (66) (No):~ 81.4% (144)
19.8% (37) 22.6% (42) 25.3% (47) ---
51.3% (96) 58.1% (108) 39.2% (73) (Yes)~ 18.7% (33)
3.35 -2-_1.42
-
-
3.49 +_ 1.49
3.02 -+ 1.52
2.99 -+ 1.59
3.62 + 1.28 3.02 ___ 1.43 --
Not high, not low High Mean +_ SD
5.2% (9) 0.6% (1)
37.2% (64) 4.1% (7)
57.6% (99) 95.3% (162)
0.6% (1) 4.1% (7)
5.9% (10) 17.8% (30)
93.5% (159) 78.1% (132)
61.6% (106)
25.0% (43)
1.2% (2) 3.6% (6) 0.6% (1) 1.8% (3) 6.4% (11) 1.8% (3)
3.83 _+ 1.02
Tests t 0.49
p NS
4.75 _+ 0.53
-10.45 <0.001
4.71 + 0.63
-11.49 <0.001
4.29 _+ 0.98
-9.27 <0.001
13.4% (23)
2.15 +_ 1.22
2.03 <0.05
8.8% (15) 19.5% (33)
90.0% (153) 76.9% (130)
4.69 + 0.71
-14.22 <0.001
4.31 + 0.95
-9.00 <0.001
3.5% (5) 9.4% (16) 25.0% (43) 11.2% (19)
96.5% (164) 88.9% (152) 68.6% (118) 87.1% (148)
4.76 + 0.52
-6.52 <0.001
4.60 _+ 0.76
-8.69 <0.001
4.01 _+ 1.07 t 4.56 + 0.81
-7.34 <0.001 --
--
All variables have been trichotomized, merging a five-point scale into three categories, with the exception of the query about referral to other parents, which was a yes/no response under "Rating of parent experience"; all means and t test results are based on the 5-point Likert scale. Values in parentheses represent number.
NS, Not significant (p >0.05). *"Parent experience" refers to parents' being told about the diagnosis of their child's condition. t"Parent preference" refers to parents' preferences for physician behaviors in telting bad news. :~Yes/no response was given. Questions to the doctor and requests for literature on medication and diagnosis seemed resented by the doctors.--41-year-old mother
of faith and knowledge.--29-year-old mother of twins 289years old
with cereb!Mpalsy (one twin, with Down syndrome, died)
of l O-year-old child with profound mental retardation and seizures T h e m a j o r i t y of parents (54%) reported t h a t t h e physician took little time "to get to the point" in conveying t h e news of their child's diagnosis. The speedy dispatch of information was not reported by one fourth of the sample, suggesting t h a t a subgroup of physicians withheld full disclosure for some time. Forty-two percent of the parents reported t h a t they h a d received little information from the physician at this encounter. In this sample of parents, less 9 ,~ . . t h a n h a l f (41%) h a d been gtven m u c h m f o r m a t t o n a b o u t the likelihood of m e n t a l retardation at the time of this encounter.
Professional attributes Our children's neonatologist was very supportive and caring. He had lost a son 2 years earlier. I believe this was the reason for his tremendous understanding. He helped us to have a great amount
When the doctor told us what she had, he told us like if he were filling out a prescription for us. Not in a cold manner, but like an everyday thing--like putting on socks or shoes. Here you are, devastated by the news, and he acts like you've known the problem all your life.--24-year-old mother of 3-year-old child with Down
syndrome H a l f of the parents (51%) reported t h a t their physician showed m u c h caring a b o u t how they felt at the diagnostic encounter. M o r e t h a n half (58%) indicated t h a t the physician was very confident in t h a t context. Physicians were less likely to be perceived as showing their own feelings. Indeed, more t h a n a t h i r d (36%) of the physicians were reported to have shown little of their own feelings at the telling of bad news. W h e n professional attributes were listed from highest to lowest means, " d o c t o r ' s confidence" was ranked higher t h a n "showing of c a r i n g " a n d " s h o w i n g of feelings."
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Socioeconomic effects and parental memories. P a r e n t education and race were examined with chi-square analysis to d e t e r m i n e their influence on parental experience. On most of the rating variables there was no significant effect (p < 0 . 0 5 ) of education or race. Significant effects of both p a r e n t education and race were found only on p a r e n t ratings of how m u c h the physician allowed t h e m to talk and how m u c h information he or she gave at the time of diagnosis. P a r e n t s with less t h a n college education (63%) were more likely (p = 0.05) to perceive t h a t the physician gave t h e m a c h a n c e to talk, in comparison with those who had college education (48%). M i n o r i t y parents (69%) were also more likely (p = 0.05) t h a n white parents (49%) to feel t h a t the physician gave t h e m a chance to talk a t the t i m e of diagnosis. P a r e n t s with less t h a n college education (46%) were more likely (p = 0.03) to perceive t h a t the physician gave t h e m a lot of information t h a n were those with college education (25%). M i n o r i t y parents (56%) were also more likely (p = 0.003) t h a n white parents (26%) to believe t h a t the physician gave t h e m a lot of information at t h e time of diagnosis. P a r e n t education, b u t not race, was significantly associated (p = 0.03) with the physician's show of feelings. Parents with less t h a n college education (47%) were more likely to find t h e physician touched or moved by t h e i r situation, t h a n were college-educated parents (32%). Race, but not p a r e n t education, was significantly related (p = 0.004) to the perception of the physician's a t t e m p t to help the parents feel better. M i n o r i t y parents (61%) were more likely to perceive the physician as trying to help t h e m feel b e t t e r t h a n were white parents (32%). Referral to other parents There was so much negativity thrown at us on top of all the rest of our problems and worries about her. No one told us how much love and happiness she would bring in our lives. What we needed was other people to talk with who had been there, firsthand. Not professionals, but parents--loving, caring people. We didn't meet others until she was about 6 months old. That's a long time to find out that we were not alone. Also that it's not the end of the world to have a special needs child.--36-year-old mother of 6-year-old girl
with chromosomal abnormality P a r e n t s were asked whether " t h e doctor put t h e m in touch with other parents with a child like their own." Few parents (19%) reported t h a t such a referral was initiated. O f the 74 families who learned the diagnosis at the child's birth, only 6 (8%) were referred to another parent.
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Table III. C o m p a r a t i v e r a n k i n g of means Parent experiences*
Parent preferences
1. MD control of conversation 2. MD showed confidence 3. MD allowed parents to talk 4. MD showed caring 5. MD showed feelings 6. MD allowed parents to show feelings 7. MD tried to help parent feel better 8. MD discussed possible mental retardation 9. Amount of information given 10. Time needed to "get to the point" to convey news
1. MD showed caring 2. MD allowed parents to talk 3. MD allowed parents to show feelings 4. Amount of information given 5. MD showed confidence 6. Referral to another parentt 7. MD discussed possible mental retardation 8. MD tried to help parent feel better 9. MD showed feelings 10. MD control of conversation 11. Time needed to "get to the point" to convey news
*Findings regarding parent referrals to other parents indicate that 3% (n = 6) were referred at birth and 15% (n = 27) were referred later, but 81% (n = 144) did not receive referral to other parents with similar children. tThis query was posed only as a Likert scale under parent preferences. every day and know what they can do and cannot do.--24-year-old
mother of a 189
child with cerebral palsy
These data focused on the telling of the diagnosis of Down syndrome; parents were asked to t h i n k a b o u t w h a t the physician's role should be.
Elements o f interaction Show a little more compassion. If I had listened to him, I could have put my daughter in an institution. Today, she walks, eats, laughs,
hugs--loves.--46-year-old mother with lO-year-old child with profound mental retardation In this hypothetical situation, parents ( T a b l e II) preferred a high degree of physician control of the diagnostic encounter a n d interaction (58%). Similarly, they highly desired to be allowed to talk (95%), to show their own feelings (94%), and to be helped to feel better (78%).
Information management The doctor was very caring. He gave us every possible bad thing that could be with our child and then came back with that he wanted our child to make him a liar. I will always greatly appreciate and respect the way in which this doctor informed us of a very serious
situation.--38-year-old mother with 20-year-old child with cerebral palsy I would have liked more information as to what to do next, what to expect.--35-year-old mother of 4-year-old child with Down
P a r e n t a l preferences for how a physician should communicate
syndrome
I feel the doctors, all doctors, should be more willing to listen to what we, as parents, have to say. After all, we are with our children
Parents (62%) preferred t h a t in this situation a physician quickly "get to the point" in conveying the bad news. They
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strongly (90%) indicated a desire for a lot of information at this encounter. Furthermore, parents preferred (77%) being told in detail about the possibility of mental retardation at the first encounter. Professional attributes The doctor simply stated the diagnosis,handed us somepapers with general information,.., told us to institutionalize him, and walked out the door. We would like to have been treated like human beings.--32-year-old mother of 4-year-old child with cerebralpalsy Our doctor that diagnosedour son could not have handled our "bad news" conversation better. He was caring, sympathetic (even tears in his eyes), direct, to the point without rushing. He answered our questions "straight"--no sugarcoating, but not total gloom and doom either.--39-year-old mother with 2-year-old with Cornelia de Lange syndrome Nearly all parents preferred a physician to show a high degree of caring in this setting (97%). Most parents wanted physicians to show strong confidence (89%) and to show much of their own feelings (69%). Socioeconomic influences on parents" preferences. Significant effects of parent education and race as tested by chi-square analysis (p <0.05) were generally limited to the queries about parents' preferences for physicians' information management. Parents with less than college education (97%) were more likely than college-educated parents (82%) to want a great deal of information at the time of diagnosis (p = 0.05). Minority parents were also more likely than white parents to desire a lot of information at this encounter (p -- 0.04). Parents with less than college education (83%) in comparison with college-educated parents (69%) desired much information about the possibility of mental retardation (p = 0.02). Minority parents were similarly more desirous than white parents of such information (t9 = 0.006). Parents with less than college education (17%) (p = 0.04) and minority parents (20%) (p = 0.02) were more likely than college-educated parents (9%) or white parents (10%) to desire a physician to take a long time to "get to the point". Most parents did not want the physicians to delay in telling the bad news. The only other parent preference influenced by parent race (although not by education) was the degree of confidence shown by the physician. Minority parents (95%) had a greater preference than white parents (86%) for their physician to show a high degree of confidence (p = 0.02). Referral to other parents It would have been nice to be put in touch with other parents of a child with Joubert syndrome.--29-year-old mother of a l 6-monthold child with Joubert syndrome On a five-point Likert scale, parents had a strong (87%) preference for physicians to "put parents in touch with other
The Journal of Pediatrics October 1992
parents with a similar child." Few parents (2%) had a low desire for such a referral. Parents' preferences compared with their experience It took a pediatrician, willingto admit the limitations of doctors, willing to cry and share his own feelings with us, to change our minds and seek the second opinion that saved our son's life! He became an equal with us in caring about the future of our child and family.--44-year-old mother of 12-year-old child with spina bifida and hydrocephalus The doctor who first saw Karen's problem was.., so horrible in handling us we tried to not pay his bill! He was terribly abrupt, businesslike,no compassion. I've had many bad experienceswith doctors and rarely have met any who considered parents' opinions valuable. I feel they must have been taught in "med" schools to detach--stay distant and controlling.--37-year-old mother of 5year-old child with autism and mental retardation A comparison was performed between parental experiences and parental preferences (Table II). A significant difference existed for nine of ten comparisons; parents generally prefered more interaction, information, and emotional content than was their experience. Table III shows a comparative ranking of means. The leading parental preferences were to have a physician who shows caring and who allows parents to talk and to show their own feelings. Physician control of the conversation ranked highest in parent memory and nearly lowest in parent preference. In spite of its relatively low comparative ranking, physician control of the interaction was still preferred by the majority of respondents. Parents recall getting relatively little information at the time of their child's diagnosis, but rank this as highly preferred. DISCUSSION This study provides insight into the relative importance of specific physician behaviors in the telling of bad news to parents. Previous studies have identified important features associated ~ t h parental satisfaction with the communication of bad news. 4-9 This study should help physicians understand what behaviors are most important to parents who are hearing bad news. Parental memories may transform the reality of experience, especially given the emotional nature of hearing bad news. It is possible that parents may recollect poor experiences more clearly than positive ones, or that dissatisfied parents are more likely to respond in studies such as this. There was no means in this retrospective study to provide documentation of actual physician behaviors, although we are convinced that parental recollections are a critical outcome measure. The comments and responses from parents indicated that the memories of "being told" are often etched into their consciousness on a permanent basis. Many parents wrote extensive commentaries on the back of the
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questionnaire forms and sometimes expressed the unfulfilled desire to communicate once again with the physician who told them of their child's condition. The response rate to the questionnaire in this study limits the ability to generalize, although the sample provides insights into the experiences of a group of parents. The physician was often perceived as in control, confident, and able to allow the parents to talk, although less likely to allow the parents to show feelings. Parents remember receiving little information at this encounter, including little information about the likelihood of mental retardation. Parents most value the physician's ability to show caring, and to allow time for parents to talk and show feelings. Parents experienced significantly fewer of these desired behaviors in the physicians who told them bad news. Nearly all parents desired referral to other parents, but only one in five had received such a referral. Less educated and minority parents were more likely to report having been given sufficient information and an adequate opportunity to talk during the initial encounter. When asked about their preferences, however, less educated and minority parents desired even more information, compared with others. It is possible that minority parents, or those with less education, more strongly perceive a need for information because they may know less about medical conditions and may have less access to sources of information aside from the physician. Little is known about how physicians are prepared to perform one of their most difficult professional roles, the telling of bad news. Some medical schools v use videotaped role-playing techniques as a training tool, but most medical students learn these skills by either observation or trial and error. Rarely are parents in a position to provide feedback to the conveyer of bad news, because they are generally absorbed in the process. The findings from this study may help inform educators about what behaviors and communicative approaches should be taught to physicians relative to the telling of bad news. Although personality plays a role in the ability of physicians to project to another's situation and then develop a relationship, studies indicate that physicians in training are capable of learning new techniques. 12 Physicians evaluate their effectiveness partly by their ability to heal their patients and make them feel better. Faced with a lifelong diagnosis for a newborn child, the physician may feel ineffectual. Physicians who believe that they cannot help may avoid dealing with the issues or engaging with parents. There may also be a concern that opening communication will encourage an endless demand from the family for support. Physicians may put a disproportionate emphasis on treating the child, rather than on allowing the parents to talk or to reveal their feelings. Physicians sometimes place a high value on intellect and may find it difficult to understand that a cognitively limited child
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may be wanted, may enhance the life of a family, and may lead a worthy life. The crisis of hearing bad news evokes discomfort. The knowledge that bad news is likely to initiate parental exPression of emotions such as crying and anger may make physicians uncomfortable. Physicians may identify with the parents' plight and fear their own emotions. On the other hand, experienced physicians may see so much pain and suffering that they insulate themselves. More needs to be learned about the value system of physicians and how they develop caring attitudes about parental needs. Medical education is generally oriented toward teaching factual and objective material, with less emphasis on emotional and sociocultural content. What factors influence medical students' and residents' abilities to communicate in a caring manner? Are physicians convinced by their training that parental perspectives have importance and can help educate clinicians? Are they encouraged to express their own feelings about their patients? The moment of being told bad news is critical for several reasons. It is the time at which the "ideal" wanted child ceases to exist and the new "special," and often unexpected, child becomes real. At this moment the family's life is changed on a permanent basis. Parents, often young, may lack experience in handling such news, and may feel lost, inadequate, or fearful. This encounter initiates the process of adapting to the new child, and the quality of the interaction may affect how the family "sees" or accepts the child and his or her special needs. The person who tells bad news takes on an important position by virtue of providing the family's introduction to the child's future. If the physician's behavior inspires trust, the family may be able to enter the future more readily. If the physician is perceived as behaving in ways that increase the family's discomfort, then the parents may have difficulty accepting the child and being hopeful. The conveyer of bad news must be skilled at inspiring trust and able to communicate effectively with parents. We acknowledge the insight and assistance of Dr. Susan Schooley and the parent-to-parent groups that participated in the initial phases of this project. We are grateful to the parents who shared their feelingsand experiencesand to the directors of the developmental day care centers that participated. REFERENCES
1. Pueschel SM, Murphy A. Assessment of counselingpractices at the birth of a chilffwith Down's syndrome.American Journal of Mental Deficiency 1976;81:325-30. 2. Gayton WF, Walker L. Down syndrome: informing the parents. Am J Dis Child 1974;127:510-2. 3. Cunningham CC, Morgan PA, McGucken RB. Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable? Dev Med Child Neurol 1984;26:33-9.
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4. Cunningham CC, Sloper T. Parents of Down's syndrome babies: their earlier needs. Child Care Health Dev 1977;3:32547. 5. Quine L, Pahl J. First diagnosis of severe mental handicap: characteristics of unsatisfactory encounters between doctors and parents. Soc Sci Med 1986;22:53-62. 6. Svarstad BL, Lipton HL. Informing parents about mental retardation: a study of professional communication and parent acceptance. Soc Sci Med 1977;11:641-5. 7. Lynch EC, Staloch NH. Parental perceptions of physicians' communication in the informing process. Merit Retard 1988;26:77-81. 8. Springer A, Steele MW. Effects of physicians' counseling on rearing of Down syndrome children. American Journal of Mental Deficiency 1980;85:1-5.
9. Lipton HL, Svarstad B. Sources of variation in clinicians' communication to parents about mental retardation. American Journal of Mental Deficiency 1977;82:155-61. 10. McDonald AC, Carson KL, Palmer DJ, Slay T. Physicians' diagnostic information to parents of handicapped neonates. Merit Retard 1980;20:12-4. 11. Wolraich ML, Albanese M, Reiter-Thayer S, Barratt W. Teaching pediatric residents to provide emotion-ladened information. Journal of Medical Education 1981;56:43840. 12. Wolraich ML, Albanese M, Reiter-Thayer S, Barratt W. Factors affecting physician communication and parent-physician dialogues. Journal of Medical Education 1982;57:63125.
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