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Flora's legacy
WAKLEY PRIZE ESSAY
Wakley prize essay
Flora’s legacy Caroline de Costa “We do not expect people to be deeply moved by what is not unusual. That element of tragedy which lies in the very fact of frequency, has not yet wrought itself into the coarse emotion of mankind.”
George Eliot, Middlemarch For more than 2 years now, we have been trying to get Flora to come for colposcopy. Flora’s problem first became evident when she appeared, late in her third pregnancy, at her local health clinic. She was then 17 years of age. At 14, she had had a miscarriage, and at 16, a stillbirth with no antenatal care. It was anxiety about the possibility of another dead baby that brought her along for that first clinic visit. The pregnancy in fact was fine, the delivery normal, the baby (a girl) healthy, but a Pap smear taken by the clinic nurse showed severe dysplasia. That same nurse, after several attempts, located Flora at a relative’s home, and explained that she should see a doctor—myself—who visits regularly from the nearest large town, some 800 km away, that she should undergo an examination of her cervix with a telescope— colposcopy—and probably have some simple treatment under local anaesthetic. Flora agreed to think about it. But on the day of her appointment, she failed to turn up, and could not be found by health workers; this happened again at the next visit, and the next. By then, Flora was pregnant again. Presenting at the clinic late one Sunday evening with some bleeding, and clearly worried about her baby, she consented to another Pap smear. This showed worsening premalignant changes. She was told in no uncertain terms that she must come for treatment after this baby was born. That second child is now 6 months old, and Flora has missed two more colposcopy appointments. The area where Flora lives, the vast Cape York peninsula of Northern Australia (that pointed bit on the right-hand side of the map), is sparsely populated, and has served as one health region for some time now. Thus, although Flora has moved around between communities, her medical history is all preserved in a single file. This is not just her medical history, though. It is the story of her life. She was born 19 years ago, when typewriters were still in use. Flora’s mother was a 15-year-old Aboriginal woman named Grace who lived in a community more than 2000 km from any of Australia’s larger cities. This community was created initially as a mission station, and into it the state government of the time brought people of several different tribes, who mostly did not get on with one another, and mostly were no longer on their Lancet 2001; 358: 2162–63 Department of Obstetrics and Gynaecology, Cairns Base Hospital, PO Box 902, Cairns, Queensland 4870, Australia (C de Costa FRANZCOG) (e-mail: [email protected])
2162
traditional lands. The result, unsurprisingly, was fighting and drinking. The community is often cut off by road during the wet season, and as a small child, Flora had several wet-season admissions to the hospital 600 km away—on each occasion she was flown there in the propeller-driven aircraft of the Flying Doctor Service. Flora had gastroenteritis and was noted to be poorly nourished; she was rehydrated, fed, and later returned by plane to her isolated community. Carbon copies of the correspondence, detailed and caring, between the hospital staff and the Flying Doctor Service, have been diligently filed in her records. A little later, aged 6, she was seen by one of my ear, nose, and throat colleagues; in ink and a flowing hand, he documents his diagnosis of chronic middle-ear infection, and his intention to insert grommets. And adds a comment: “bright little girl”. However, there is nothing in the notes to confirm that Flora ever had this surgery, although there are several attendances later in her childhood with measles and pneumonia, scabies and infected sores, at clinics throughout the Cape. 5 years ago, she miscarried her first pregnancy; blood samples taken at the time showed positive results for syphilis. The results were mailed to the clinic—the postman flies all over the Cape—and included in her chart, but she was only located, and treated with penicillin, when she was pregnant again and in fact in labour with her premature stillborn son. Also noted at that time was the fact that she had become a heavy smoker. Finally, Flora’s records contain the recent computer printouts of the details of her latest two births, and the results of her Pap smears—all the clinics in the region are now linked by a computer network so that correspondence and pathology results are instantly accessible. It is easy to see that Flora’s last baby was underweight and required admission to the neonatal nursery in the regional hospital for several days’ intensive care. And Flora’s need for colposcopy will flash onto the screen of every clinic in the region that she may present to, for herself or with her children. Yet despite this ready availability of technology, I fear that her severe cervical dysplasia will become invasive cancer before we can prevent it. Apart from her name, few of Flora’s details have been changed. Her case has not been exaggerated, nor is she unique. I chose to write about her for several reasons. Although she lives in a remote area, Flora in many ways has been provided with excellent medical services. All the communities she has stayed in have health centres with trained nursing staff and regular visits from the doctors of the Royal Flying Doctor Service, who also provide a highquality emergency service. Specialists of many kinds visit frequently, and for surgery and other procedures, patients are flown to the larger towns. Flora has had her pregnancies assessed in her own community with a portable ultrasound machine, she has been taken by plane thousands of kilometres for the births of her babies, and a mobile colposcope is available for her cervical assessment.
THE LANCET • Vol 358 • December 22/29, 2001
For personal use only. Reproduce with permission from The Lancet Publishing Group.
WAKLEY PRIZE ESSAY
However, so far, these services have had almost no impact on her health. The only item that has made a demonstrable difference was the benzathine penicillin that cured her syphilis. She remains unconvinced of her need for colposcopy. On a larger scale, the same thing can be said of Aboriginal people in rural Australia generally. Their health, as numerous recent surveys testify, is getting worse rather than better, despite more and more technology, apparently better access to services, and greater portability of investigations and procedures. How can this be? It seems that the provision of services, of increasingly complex technology, and of dedicated trained staff, is not in itself enough. There has to be something more. There has to be, at the least, understanding of, and willingness to use, these services. These are surprisingly difficult concepts for those of us schooled in the “white, western” model of health care to grasp. I know that it is not simply that Flora does not want to help herself or cannot be bothered. But I do not know what she does feel. Is it that the clinic and hospital are airconditioned, cold, white, frightening places? That the doctors and nurses change so often? That there are always different faces—white or Asian but never Aboriginal? That they use long words that Flora does not know? That there is pain, and there are needles and other things that poke or prod her whose purpose is uncertain? Is it that she will risk this for her babies, because she can see the results, but that she cannot understand why she should do it otherwise? Most of my patients, even though they may have been born overseas, or speak different languages, or come from different ethnic groups, are familiar, indeed comfortable with this white, western model, and thus I expect the women I treat to make positive decisions about their health—considered and rational choices. For this is in fact what usually happens. Faced with an abnormal Pap smear, these women generally present for investigation, at once, in some alarm, ask many questions, and choose from several possible treatment options. Because, of course, they feel in control of their own lives, and believe that making decisions to improve their health is part of that control. Flora, though, to make such decisions, must not only be able to comprehend the various options. She must believe she has a future to control. In theory, Flora has been offered education of the same standard as other Australians her age. The reality is somewhat different. It is not that there are no teaching staff, as devoted as the nursing and medical staff, in the communities where she has lived, or school buildings, or equipment. However, in her first years of schooling, with recurrent ear infections, she could not hear very well, she could not always understand what the teacher was saying, English was only her second language, there were no books at home, and she never really learnt to read. Then, her family moved frequently between communities, schools changed, her attendance was erratic, she was often
THE LANCET • Vol 358 • December 22/29, 2001
ill, and she dropped behind. Finally, at 13, Flora left school altogether—barely literate or numerate, with very little idea of the world she lives in, and little competence in coping with this world, certainly not enough to admit her to the larger Australian society. Flora cannot read the brochures we have supplied to her about cervical cancer. She has never experienced paid employment. She lacks also the skills of a traditional lifestyle, which have all but disappeared from her family’s knowledge. And brought up herself by a very young mother, she has learnt little of capable parenting, although she is deeply concerned for the welfare of her children. The “bright little girl” has not become a bright young woman; Flora’s tiny spark has been quickly trodden out. In Flora’s story, the inseparable links between health and education can be easily seen. To have good health, knowledge is needed; to acquire that knowledge, one must start with good health. Flora’s birth legacy—her legacy of poverty, poor housing, recurrent infection, alcohol and nicotine addiction, teenage pregnancy—has excluded her from good health and good education, and placed her on the margins, both physical and metaphorical, of our society. It is clear from her story that culturally appropriate and intensive education, as well as medical services, need to be supplied from a very early age if we are to break that cycle of events which now denies Flora a place in Australian society. Flora is part of only a small disadvantaged minority in this wealthy developed country, and yet we have not prevented her legacy from determining her life in just a few short years. We could have, and should have, done much more. It is probably already too late to improve her general health, or to overcome her illiteracy. It is certainly too late for her mother, Grace—diabetic and alcoholic at the age of 34—or her grandmother, dying of lung cancer in her early 50s. Perhaps our only hope now lies in changing things for Flora’s children. Flora’s story is simple. Deceptively so. In George Eliot’s words, Flora’s experience, not unusual, is not considered the stuff of tragedy, does not have the drama of television news bulletins. Her premature death will go largely unremarked. Yet Flora’s legacy is the legacy of millions of women in developing countries, who are inescapably programmed to lead lives of poor nutrition, poor housing, poor sanitation, frequent infectious disease, little formal education, and childbearing at an early age, so that the legacy is passed on. We know, for example, that adult illiteracy is a good predictor of high infant mortality rates, wherever these are studied, and of high rates of maternal and perinatal death. Just as obvious are links between education and other causes of death. It is clear, both from global studies, and from individual stories like Flora’s, that education, in particular education of girls, is the key to improving the health of future generations. We must, then, allow what is “not unusual”, the fact of small frequent tragedies, to enter into our “coarse emotion”, and be moved.
2163
For personal use only. Reproduce with permission from The Lancet Publishing Group.
Wakley prize essay
Flora’s legacy Caroline de Costa “We do not expect people to be deeply moved by what is not unusual. That element of tragedy which lies in the very fact of frequency, has not yet wrought itself into the coarse emotion of mankind.”
George Eliot, Middlemarch For more than 2 years now, we have been trying to get Flora to come for colposcopy. Flora’s problem first became evident when she appeared, late in her third pregnancy, at her local health clinic. She was then 17 years of age. At 14, she had had a miscarriage, and at 16, a stillbirth with no antenatal care. It was anxiety about the possibility of another dead baby that brought her along for that first clinic visit. The pregnancy in fact was fine, the delivery normal, the baby (a girl) healthy, but a Pap smear taken by the clinic nurse showed severe dysplasia. That same nurse, after several attempts, located Flora at a relative’s home, and explained that she should see a doctor—myself—who visits regularly from the nearest large town, some 800 km away, that she should undergo an examination of her cervix with a telescope— colposcopy—and probably have some simple treatment under local anaesthetic. Flora agreed to think about it. But on the day of her appointment, she failed to turn up, and could not be found by health workers; this happened again at the next visit, and the next. By then, Flora was pregnant again. Presenting at the clinic late one Sunday evening with some bleeding, and clearly worried about her baby, she consented to another Pap smear. This showed worsening premalignant changes. She was told in no uncertain terms that she must come for treatment after this baby was born. That second child is now 6 months old, and Flora has missed two more colposcopy appointments. The area where Flora lives, the vast Cape York peninsula of Northern Australia (that pointed bit on the right-hand side of the map), is sparsely populated, and has served as one health region for some time now. Thus, although Flora has moved around between communities, her medical history is all preserved in a single file. This is not just her medical history, though. It is the story of her life. She was born 19 years ago, when typewriters were still in use. Flora’s mother was a 15-year-old Aboriginal woman named Grace who lived in a community more than 2000 km from any of Australia’s larger cities. This community was created initially as a mission station, and into it the state government of the time brought people of several different tribes, who mostly did not get on with one another, and mostly were no longer on their Lancet 2001; 358: 2162–63 Department of Obstetrics and Gynaecology, Cairns Base Hospital, PO Box 902, Cairns, Queensland 4870, Australia (C de Costa FRANZCOG) (e-mail: [email protected])
2162
traditional lands. The result, unsurprisingly, was fighting and drinking. The community is often cut off by road during the wet season, and as a small child, Flora had several wet-season admissions to the hospital 600 km away—on each occasion she was flown there in the propeller-driven aircraft of the Flying Doctor Service. Flora had gastroenteritis and was noted to be poorly nourished; she was rehydrated, fed, and later returned by plane to her isolated community. Carbon copies of the correspondence, detailed and caring, between the hospital staff and the Flying Doctor Service, have been diligently filed in her records. A little later, aged 6, she was seen by one of my ear, nose, and throat colleagues; in ink and a flowing hand, he documents his diagnosis of chronic middle-ear infection, and his intention to insert grommets. And adds a comment: “bright little girl”. However, there is nothing in the notes to confirm that Flora ever had this surgery, although there are several attendances later in her childhood with measles and pneumonia, scabies and infected sores, at clinics throughout the Cape. 5 years ago, she miscarried her first pregnancy; blood samples taken at the time showed positive results for syphilis. The results were mailed to the clinic—the postman flies all over the Cape—and included in her chart, but she was only located, and treated with penicillin, when she was pregnant again and in fact in labour with her premature stillborn son. Also noted at that time was the fact that she had become a heavy smoker. Finally, Flora’s records contain the recent computer printouts of the details of her latest two births, and the results of her Pap smears—all the clinics in the region are now linked by a computer network so that correspondence and pathology results are instantly accessible. It is easy to see that Flora’s last baby was underweight and required admission to the neonatal nursery in the regional hospital for several days’ intensive care. And Flora’s need for colposcopy will flash onto the screen of every clinic in the region that she may present to, for herself or with her children. Yet despite this ready availability of technology, I fear that her severe cervical dysplasia will become invasive cancer before we can prevent it. Apart from her name, few of Flora’s details have been changed. Her case has not been exaggerated, nor is she unique. I chose to write about her for several reasons. Although she lives in a remote area, Flora in many ways has been provided with excellent medical services. All the communities she has stayed in have health centres with trained nursing staff and regular visits from the doctors of the Royal Flying Doctor Service, who also provide a highquality emergency service. Specialists of many kinds visit frequently, and for surgery and other procedures, patients are flown to the larger towns. Flora has had her pregnancies assessed in her own community with a portable ultrasound machine, she has been taken by plane thousands of kilometres for the births of her babies, and a mobile colposcope is available for her cervical assessment.
THE LANCET • Vol 358 • December 22/29, 2001
For personal use only. Reproduce with permission from The Lancet Publishing Group.
WAKLEY PRIZE ESSAY
However, so far, these services have had almost no impact on her health. The only item that has made a demonstrable difference was the benzathine penicillin that cured her syphilis. She remains unconvinced of her need for colposcopy. On a larger scale, the same thing can be said of Aboriginal people in rural Australia generally. Their health, as numerous recent surveys testify, is getting worse rather than better, despite more and more technology, apparently better access to services, and greater portability of investigations and procedures. How can this be? It seems that the provision of services, of increasingly complex technology, and of dedicated trained staff, is not in itself enough. There has to be something more. There has to be, at the least, understanding of, and willingness to use, these services. These are surprisingly difficult concepts for those of us schooled in the “white, western” model of health care to grasp. I know that it is not simply that Flora does not want to help herself or cannot be bothered. But I do not know what she does feel. Is it that the clinic and hospital are airconditioned, cold, white, frightening places? That the doctors and nurses change so often? That there are always different faces—white or Asian but never Aboriginal? That they use long words that Flora does not know? That there is pain, and there are needles and other things that poke or prod her whose purpose is uncertain? Is it that she will risk this for her babies, because she can see the results, but that she cannot understand why she should do it otherwise? Most of my patients, even though they may have been born overseas, or speak different languages, or come from different ethnic groups, are familiar, indeed comfortable with this white, western model, and thus I expect the women I treat to make positive decisions about their health—considered and rational choices. For this is in fact what usually happens. Faced with an abnormal Pap smear, these women generally present for investigation, at once, in some alarm, ask many questions, and choose from several possible treatment options. Because, of course, they feel in control of their own lives, and believe that making decisions to improve their health is part of that control. Flora, though, to make such decisions, must not only be able to comprehend the various options. She must believe she has a future to control. In theory, Flora has been offered education of the same standard as other Australians her age. The reality is somewhat different. It is not that there are no teaching staff, as devoted as the nursing and medical staff, in the communities where she has lived, or school buildings, or equipment. However, in her first years of schooling, with recurrent ear infections, she could not hear very well, she could not always understand what the teacher was saying, English was only her second language, there were no books at home, and she never really learnt to read. Then, her family moved frequently between communities, schools changed, her attendance was erratic, she was often
THE LANCET • Vol 358 • December 22/29, 2001
ill, and she dropped behind. Finally, at 13, Flora left school altogether—barely literate or numerate, with very little idea of the world she lives in, and little competence in coping with this world, certainly not enough to admit her to the larger Australian society. Flora cannot read the brochures we have supplied to her about cervical cancer. She has never experienced paid employment. She lacks also the skills of a traditional lifestyle, which have all but disappeared from her family’s knowledge. And brought up herself by a very young mother, she has learnt little of capable parenting, although she is deeply concerned for the welfare of her children. The “bright little girl” has not become a bright young woman; Flora’s tiny spark has been quickly trodden out. In Flora’s story, the inseparable links between health and education can be easily seen. To have good health, knowledge is needed; to acquire that knowledge, one must start with good health. Flora’s birth legacy—her legacy of poverty, poor housing, recurrent infection, alcohol and nicotine addiction, teenage pregnancy—has excluded her from good health and good education, and placed her on the margins, both physical and metaphorical, of our society. It is clear from her story that culturally appropriate and intensive education, as well as medical services, need to be supplied from a very early age if we are to break that cycle of events which now denies Flora a place in Australian society. Flora is part of only a small disadvantaged minority in this wealthy developed country, and yet we have not prevented her legacy from determining her life in just a few short years. We could have, and should have, done much more. It is probably already too late to improve her general health, or to overcome her illiteracy. It is certainly too late for her mother, Grace—diabetic and alcoholic at the age of 34—or her grandmother, dying of lung cancer in her early 50s. Perhaps our only hope now lies in changing things for Flora’s children. Flora’s story is simple. Deceptively so. In George Eliot’s words, Flora’s experience, not unusual, is not considered the stuff of tragedy, does not have the drama of television news bulletins. Her premature death will go largely unremarked. Yet Flora’s legacy is the legacy of millions of women in developing countries, who are inescapably programmed to lead lives of poor nutrition, poor housing, poor sanitation, frequent infectious disease, little formal education, and childbearing at an early age, so that the legacy is passed on. We know, for example, that adult illiteracy is a good predictor of high infant mortality rates, wherever these are studied, and of high rates of maternal and perinatal death. Just as obvious are links between education and other causes of death. It is clear, both from global studies, and from individual stories like Flora’s, that education, in particular education of girls, is the key to improving the health of future generations. We must, then, allow what is “not unusual”, the fact of small frequent tragedies, to enter into our “coarse emotion”, and be moved.
2163
For personal use only. Reproduce with permission from The Lancet Publishing Group.