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BIRTH 19:2 June 1992
Commentary: How D o You Give the Bad News to Parents? Helen Statham, B.Sc., and JoanieDimavicius For most pregnant women in the United Kingdom and North America routine antenatal care includes at least one ultrasound scan. For most parents it is the first opportunity to “see the baby,” get the first photo for the album, and be told that things look all right. Usually they can be told what they want to hear, but occasionally something will be the wrong size or shape. When this happens, the discipline of the ultrasound operator is unlikely to be of very much concern to the parents; of far greater importance will be his or her competence and attitude (1). The detection of an anomaly is usually unexpected and always devastating. The ultrasonographer is in a different position from others involved in prenatal diagnosis; the result can be immediate, the parents are present, and the anomaly is there for all to see on the screen. Many implications of this interaction between the parents and the scan operator can have important consequences for the parents as their wanted baby becomes an abnormal fetus. What happens when it is first realized that a problem might exist? Parents are usually immediately sensitive to anything being not quite right; it must be very difficult for the operator, knowing the possible implications of the findings. Thus it is essential for the operator to be aware of the messages that body language convey even before anything is said.
. . . they go, oh-they just sort of make a remark and they’ll go back, and you can see by their face when they are concentrating that there must be something not quite what it should be. You know, and then they’ll do it again and do it again, and you know there’s something not quite . . . (2). What follows depends on the skill and level of seniority of the operator, local hospital practice, and the degree of certainty regarding the problem that was observed. Many operators are not authorized to disclose their findings to the parents. They may be less experienced in both making the diag-
Helen Statham works in the Child Care and Development Group, University of Cambridge in Cambridge, United Kingdom. Joanie Dimavicius works in Support After Termination For Abnormality in London, United Kingdom. Send correspondence to Helen Statham, Child Care and Development Group, Free School Lane, Cambridge, CB2 3RF, United Kingdom.
nosis and in dealing with their own feelings related to it. They have to explain to the parents that they must see someone else, not wanting to lie to them, with both parties knowing that what is happening is out of the ordinary. They also know that anything they might do to make the situation easier, such as finding the parents somewhere private to wait, will confirm that something must be wrong. So what is said? And how? Is a partner or friend brought in? Where do they wait? Crucially, how long do they wait? For health caregivers who can tell parents what they have seen, or those called to confirm a suspected abnormality, many of the same issues arise. What words do they use to say what is wrong? It is all too easy at times of stress for any of us to lapse into the technical jargon of our profession; parents who are thinking of a baby are unlikely to understand the significance of bananas and lemons. Are they encouraged to look at the screen and see for themselves what is wrong? Can they be told clearly what will happen next and when it will happen? The events that follow the initial diagnosis vary with the anomaly that has been found, with established procedures within a particular hospital, and especially with the degree of certainty about the diagnosis. Particular problems may arise when an anomaly is suspected but has disappeared two weeks later or has become a confirmed abnormality. We were told that because of the baby’s posture not all of the heart was visible and a second scan would be needed in a few weeks. We were told this was routine, since my wife was at an earlier stage of pregnancy than was normal for a scan. Since there was no apparent need for concern, my wife attended the next scan four weeks later accompanied only by our young son. . . . (2).
It can be difficult to balance the importance of not generating unnecessary anxiety with that of enabling parents to be prepared. . . . The existence of a major heart abnormality was suspected and my wife told. She was devastated. Alone she was forced to walk from the maternity unit to the main hospital, where she waited in a public waiting room to see the radiographer who conducted a second scan and confirmed the abnormality. She then again waited in public whilst the radiographer referred her to a consultant and made an appointment for a fetal heart scan elsewhere; throughout this she wept, grief stricken, while trying to cope with our young son (2).
104
If a confirmatory diagnosis is needed at a specialist center, how quickly can that be arranged? At what point does the woman’s obstetrician become involved? It is highly likely that the parents may have to wait around for a while; can this always be in a private room? If the woman is alone, is someone sympathetic available to sit with her? Can a partner or friend be contacted, or someone accompany her around the hospital? If she remains alone, how does she get home? In the interests of safety, arrangements for going home should be made for any unaccompanied woman. The diagnosis of an abnormality is only the beginning. The parents then have to talk to someone about the prognosis for their baby and the options open to them; this is usually an obstetrician or pediatrician, but some may wish to make contact with specific disability organizations or someone concerning pregnancy termination; information about such contacts should be available. In a state of shock, parents have to make difficult and painful decisions about the future of the pregnancy. Whatever they decide, they lose the healthy baby that they had expected, and the pregnancy changes from being a time of joy and hope for their future to one of grief. Those who choose to terminate must know what will be involved. The parent handbook from Support After Termination for Abnormality (3) draws on the experiences of parents who have faced the decision, and discusses the physical and psychological issues. It can be helpful if the couple have someone who they trust to whom they can express their fears and feelings and who will talk to them about the kinds of emotions they will have to face. Some hospitals have a designated person who supports parents through the subsequent stages and is there to listen and answer their questions. This system can work to the advantage of everyone. It allows for the continuity of care and support of couples, and provides a clear working structure for staff.
BIRTH 19:2 June 1992
Ultrasound departments are usually busy places; the time allowed for a scan appointment assumes all will be well. Although part of the sonographer’s job is to detect anomalies, it is a shock when one is found. Other women have to be scanned, all with heightened anxiety because they are aware of one untoward result. It places tremendous pressure on the operator, coping with and containing his or her own feelings of shock and perhaps sadness while approaching the next mother with a positive attitude. Who supports the operator? Is there any training in how to give bad news, in how to deal with this most sensitive area of their work? If the news is bad, the temptation always is to blame the messenger. An ultrasonographer might well feel that whatever is said and however it is said does not make any measurable difference to how parents feel about probably the most devastating piece of information they have ever been given. At the end of it all, these parents will not have their baby, but they will have a lot of memories that they will relive time and time again. The words used to describe their baby’s problems and how they were said are the starting point for those memories. That is why it is so necessary that parents be approached in a sensitive and thoughtful manner. Notes and References Green JM, Statham H, Snowdon C. Pregnancy: A Testing Time. Report of the Cambridge Prenatal Screening Study, in progress. This is a large prospective study of the social and psychological aspects of screening for fetal abnormality during routine antenatal care. Report available from Child Care and Development Group, Free School Lane, Cambridge, CB2 3RF, United Kingdom. Quotations are from parents involved in the Cambridge Prenatal Screening Study or who have contacted Support After Termination for Abnormality (SATFA). Support After Termination for Abnormality. A Parents’ Handbook. London: Author, 1991. Available from SATFA, 29-30 Soh0 Square, London, W l V 6JB, United Kingdom. (cost f2.50)
BIRTH 19:2 June 1992
Commentary: How D o You Give the Bad News to Parents? Helen Statham, B.Sc., and JoanieDimavicius For most pregnant women in the United Kingdom and North America routine antenatal care includes at least one ultrasound scan. For most parents it is the first opportunity to “see the baby,” get the first photo for the album, and be told that things look all right. Usually they can be told what they want to hear, but occasionally something will be the wrong size or shape. When this happens, the discipline of the ultrasound operator is unlikely to be of very much concern to the parents; of far greater importance will be his or her competence and attitude (1). The detection of an anomaly is usually unexpected and always devastating. The ultrasonographer is in a different position from others involved in prenatal diagnosis; the result can be immediate, the parents are present, and the anomaly is there for all to see on the screen. Many implications of this interaction between the parents and the scan operator can have important consequences for the parents as their wanted baby becomes an abnormal fetus. What happens when it is first realized that a problem might exist? Parents are usually immediately sensitive to anything being not quite right; it must be very difficult for the operator, knowing the possible implications of the findings. Thus it is essential for the operator to be aware of the messages that body language convey even before anything is said.
. . . they go, oh-they just sort of make a remark and they’ll go back, and you can see by their face when they are concentrating that there must be something not quite what it should be. You know, and then they’ll do it again and do it again, and you know there’s something not quite . . . (2). What follows depends on the skill and level of seniority of the operator, local hospital practice, and the degree of certainty regarding the problem that was observed. Many operators are not authorized to disclose their findings to the parents. They may be less experienced in both making the diag-
Helen Statham works in the Child Care and Development Group, University of Cambridge in Cambridge, United Kingdom. Joanie Dimavicius works in Support After Termination For Abnormality in London, United Kingdom. Send correspondence to Helen Statham, Child Care and Development Group, Free School Lane, Cambridge, CB2 3RF, United Kingdom.
nosis and in dealing with their own feelings related to it. They have to explain to the parents that they must see someone else, not wanting to lie to them, with both parties knowing that what is happening is out of the ordinary. They also know that anything they might do to make the situation easier, such as finding the parents somewhere private to wait, will confirm that something must be wrong. So what is said? And how? Is a partner or friend brought in? Where do they wait? Crucially, how long do they wait? For health caregivers who can tell parents what they have seen, or those called to confirm a suspected abnormality, many of the same issues arise. What words do they use to say what is wrong? It is all too easy at times of stress for any of us to lapse into the technical jargon of our profession; parents who are thinking of a baby are unlikely to understand the significance of bananas and lemons. Are they encouraged to look at the screen and see for themselves what is wrong? Can they be told clearly what will happen next and when it will happen? The events that follow the initial diagnosis vary with the anomaly that has been found, with established procedures within a particular hospital, and especially with the degree of certainty about the diagnosis. Particular problems may arise when an anomaly is suspected but has disappeared two weeks later or has become a confirmed abnormality. We were told that because of the baby’s posture not all of the heart was visible and a second scan would be needed in a few weeks. We were told this was routine, since my wife was at an earlier stage of pregnancy than was normal for a scan. Since there was no apparent need for concern, my wife attended the next scan four weeks later accompanied only by our young son. . . . (2).
It can be difficult to balance the importance of not generating unnecessary anxiety with that of enabling parents to be prepared. . . . The existence of a major heart abnormality was suspected and my wife told. She was devastated. Alone she was forced to walk from the maternity unit to the main hospital, where she waited in a public waiting room to see the radiographer who conducted a second scan and confirmed the abnormality. She then again waited in public whilst the radiographer referred her to a consultant and made an appointment for a fetal heart scan elsewhere; throughout this she wept, grief stricken, while trying to cope with our young son (2).
104
If a confirmatory diagnosis is needed at a specialist center, how quickly can that be arranged? At what point does the woman’s obstetrician become involved? It is highly likely that the parents may have to wait around for a while; can this always be in a private room? If the woman is alone, is someone sympathetic available to sit with her? Can a partner or friend be contacted, or someone accompany her around the hospital? If she remains alone, how does she get home? In the interests of safety, arrangements for going home should be made for any unaccompanied woman. The diagnosis of an abnormality is only the beginning. The parents then have to talk to someone about the prognosis for their baby and the options open to them; this is usually an obstetrician or pediatrician, but some may wish to make contact with specific disability organizations or someone concerning pregnancy termination; information about such contacts should be available. In a state of shock, parents have to make difficult and painful decisions about the future of the pregnancy. Whatever they decide, they lose the healthy baby that they had expected, and the pregnancy changes from being a time of joy and hope for their future to one of grief. Those who choose to terminate must know what will be involved. The parent handbook from Support After Termination for Abnormality (3) draws on the experiences of parents who have faced the decision, and discusses the physical and psychological issues. It can be helpful if the couple have someone who they trust to whom they can express their fears and feelings and who will talk to them about the kinds of emotions they will have to face. Some hospitals have a designated person who supports parents through the subsequent stages and is there to listen and answer their questions. This system can work to the advantage of everyone. It allows for the continuity of care and support of couples, and provides a clear working structure for staff.
BIRTH 19:2 June 1992
Ultrasound departments are usually busy places; the time allowed for a scan appointment assumes all will be well. Although part of the sonographer’s job is to detect anomalies, it is a shock when one is found. Other women have to be scanned, all with heightened anxiety because they are aware of one untoward result. It places tremendous pressure on the operator, coping with and containing his or her own feelings of shock and perhaps sadness while approaching the next mother with a positive attitude. Who supports the operator? Is there any training in how to give bad news, in how to deal with this most sensitive area of their work? If the news is bad, the temptation always is to blame the messenger. An ultrasonographer might well feel that whatever is said and however it is said does not make any measurable difference to how parents feel about probably the most devastating piece of information they have ever been given. At the end of it all, these parents will not have their baby, but they will have a lot of memories that they will relive time and time again. The words used to describe their baby’s problems and how they were said are the starting point for those memories. That is why it is so necessary that parents be approached in a sensitive and thoughtful manner. Notes and References Green JM, Statham H, Snowdon C. Pregnancy: A Testing Time. Report of the Cambridge Prenatal Screening Study, in progress. This is a large prospective study of the social and psychological aspects of screening for fetal abnormality during routine antenatal care. Report available from Child Care and Development Group, Free School Lane, Cambridge, CB2 3RF, United Kingdom. Quotations are from parents involved in the Cambridge Prenatal Screening Study or who have contacted Support After Termination for Abnormality (SATFA). Support After Termination for Abnormality. A Parents’ Handbook. London: Author, 1991. Available from SATFA, 29-30 Soh0 Square, London, W l V 6JB, United Kingdom. (cost f2.50)
