Breaking bad news

832

Venepuncture distress and research

in

childhood SIR,-Dr Mott and Dr Chambers believe that the new British Paediatric Association (BPA) guidelines for the ethical conduct of medical research involving children, by designating venepuncture as a low rather than a minimum risk procedure, might discourage important research that could benefit children. Clearly venepuncture can cause distress to many children. It should only be used in research when there is a compelling scientific reason and substantial likely benefits. However, in designating venepuncture as low risk because of its distressing effects the BPA report seems to have ignored important factors that alter the way children react to potentially distressing experiences and those such as children’s ability to consent and sympathise with others. Dislike of painful medical procedures is universal, but the fact that children express their distress more overtly than adults does not necessarily mean that they are more affected. Despite the fact that most children have injections during vaccinations, less than 7% of British schoolchildren are afraid of medical procedures.’ Moreover, self-report measures of children’s distress in health care settings do not correspond with measures of distress-related behaviours. The latter measures largely reflect an interpersonal dimension of distress and are probably related to the fact that many schoolchildren believe doctors are only aware of the painful nature of treatment if they cry.2 There is evidence that preparation of children-providing information, modelling, encouraging them to deal with stress and reduce anxiety reactions, distraction by both mothers and doctorscan reduce and virtually eliminate any overt sign of distress during venepuncture and other procedures.3,4 An implicit assumption in the BPA ethical guidelines is that adults can consent to the discomfort of injections but children cannot. This belief is contrary to the spirit of the new Children’s Act, which emphasises the importance of obtaining the child’s consent in decisions affecting him or her. Many children are able to consent to or refuse procedures. Whether they consent or not will depend on how procedures are explained to them, their trust in adults, the support offered, and their level of altruism. An ability to sympathise with illness in others and a desire to help is already present in young schoolchildren and increases steadily throughout childhood.s There are individual variations in children’s reactions to distress and these variations are related to temperamental features in the child, intelligence level, and previous experiences. All these factors should be taken into account in any research involving venepuncture. The BPA guidelines mention the need to consider psychosocial issues in research. Psychosocial assessment can help to predict distress reactions to medical procedures in children and should also help to reduce them. St Mary’s Hospital Academic Unit of Child and Adolescent Psychiatry, Central Middlesex Hospital, London NW10 7NS, UK

ELENA GARRALDA

1. Ollendick 2. 3. 4.

5.

TH, Yule W, Oilier K. Fears in British children and their relationship to manifest anxiety and depression. J Child Psychol Psychiatry 1991; 32: 321-32. Eiser C. Changes in understanding of illness as the child grows. Arch Dis Child, 1985; 60: 489-92. Rodin J. Will this hurt? London: Royal College of Nursing, 1983. Siegel LJ. Measuring children’s adjustment to hospitalization and to medical procedures. In: Karoly P, ed. Handbook of child health assessment. New York: John Wiley, 1988. Szagun G. Children’s understanding of the feeling experience and causes of sympathy. J Child Psychol Psychiatry 1992; 33: 1183-91.

Maternal

mortality estimation

SIR,-In 1988 Graham and co-workers1 reported the first field a new method for estimating maternal mortality in developing countries-the sisterhood method. Since then this demographic technique has provided the first community-based estimates in many populations in which death registration and health service statistics are seriously deficient. As experience has been gained, the sisterhood method has been refined, adapted, and

trial of

evaluated. We report its successful

application

in health

centre

users.

The sisterhood method is based

on

information obtained from

adults about the survival of their adult sisters Z One of its major advantages it that such data can be obtained from four basic questions being asked during a census or household sample survey. The method thus provides a low-cost route to estimating maternal mortality from an existing data collection activity. Although community-based censuses and surveys are often the only representative data sources in many developing countries, financial and logistical considerations restrict both their frequency and coverage. Additional opportunities for obtaining basic data for the sisterhood method were therefore sought. Experience from a method used for estimating child mortality, the preceding birth techniquesuggested that adults using primary health services could, in certain settings, provide a suitable opportunistic sample. In 1992 the chance arose to examine this approach in region I of Nicaragua. This is a mountainous area in the north of the country with a population of about 450 000. The region has a health centre in each of the 26 districts, plus seven health posts in the largest towns and fifty-eight scattered throughout rural areas. For each of these health units, a sample size proportional to population served was determined. Adults seeking health care for themselves or their children during July, 1992, were randomly selected until the designated sample size was reached. In most units this took about one week. A total of 9454 adults were interviewed by health unit personnel using the four basic questions for the sisterhood method. The lifetime risk of maternal death based on data from respondents under 50 years of age was 0-0144 (1 in 69). This corresponds to a maternal mortality ratio of about 241 maternal deaths per 100 000 live births. A community-based study with the sisterhood method had been done by the Ministry of Health in this region in November, 1991 (I. D. unpublished). In this household survey, 9663 adults were interviewed over 2-3 weeks, with the lifetime risk of maternal death being estimated at 0-0145. The two studies thus provided remarkably similar findings. However, the health services study was logistically simpler and less expensive than the community-based

study. The application of the sisterhood method in health services is clearly only appropriate in certain circumstances. Further detailed analyses of the Nicaraguan data are underway to characterise the population of health service users and to devise guidelines on suitable settings for this low-cost and efficient approach to estimating maternal mortality. Maternal and Child Epidemiology Unit, London School of Hygiene and Tropical Medicine, London WC1 E 7HT, UK, and Ministry of Health,

Region I, Nicaragua

ISABELLA DANEL PEDRO CASTILLO WENDY GRAHAM

W, Brass W, Snow RW. Estimating maternal mortality m developing countries. Lancet 1988; i: 416-17. 2. Graham W, Brass W, Snow RW. Estimating maternal mortality using the sisterhood method. Stud Fam Plan 1989; 20: 125-35. 3. Brass W, Macrae S. Childhood mortality estimated from reports on previous births given by mothers at the time of a maternity I, preceding birth technique. Asian Pacific Forum 1985; 11: 5-8. 1. Graham

Breaking bad

news

SiR,-Since I achieved the lowest mark on our breaking bad medical school, I was interested in Dr Fallowfield’s

news course at

comprehensive review. Her report (Feb 20, p 476) draws attention to a common fallacy in this subject-that how you break bad news has a long-term impact on the recipient’s psychological outcome. There is absolutely no good evidence for this. In favour of the contention Fallowfield cites research on breast cancer psychological morbidity, but that particular study only suggests that patients who have a poor emotional outcome retrospectively view the advice they were given negatively. Which is cause and which is effect remains unclear. The only other study2 Fallowfield cites in support showed that those who received bad news delivered skillfully were more satisfied than a comparison group who dealt with professionals untrained in this -

skill. No

prospective long-term follow-up has yet demonstrated any significant impact on patients’ or relatives’ long-term adjustment of

833

the way doctors break bad news. Suggesting that this is the case merely puts pressure on doctors to break bad news well, or else be responsible for damaging people forever. There are already enough pressures on physicians at these moments of crisis without further complicating the issue for them. Fallowfield uses the example of a physician racked with guilt about the way he broke some bad news thirty years ago. Intuitively I would guess that the enormity of the kind of bad news we impart dwarfs the issue of how it is conveyed to the recipient. There are good reasons why doctors should be well trained in breaking bad news, but these have more to do with minimising the guilt and trauma for the doctor, than vague unsupported claims of preventing poor long-term outcome in our

patients. Institute of Psychiatry, De Crespigny Park,

Denmark Hill, London SE5 8AF, UK

1. Fallowfield

R. PERSAUD

LJ, Baum M, Maguire GP. The effects of breast conservation

on

the

psychologic morbidity associated with the diagnosis and treatment of early breast 2.

cancer. BMJ 1986; 293: 1331-34. Cunningham C, Morgan P, McGuken R. Down’s syndrome: is dissatisfaction with disclosure of diagnosis inevitable? Devel Med Child Neurol 1984; 26: 33-39.

SIR,-Dr Fallowfield emphasises the need for improved training in communication skills. Training techniques using video taping lead to substantial improvements in communication skills in this difficult area. The British Medical Association Board of Science and Education has identified breaking bad news to patients as a key stressor for health care workers and has produced an educational package on dealing with the unexpected death of a patient. The video1 consists of a 20 minute dramatised account of the work of a casualty house officer during a difficult 24 hour shift, which includes the death of a child. This powerful fictional account is followed by brief discussion among three doctors about ways of managing sudden bereavement, including breaking bad news to relatives and minimising avoidable stress for staff. The video and accompanying notes are intended to help doctors identify and explore sources of stress related to their profession. In particular, the video aims to stimulate debate on the effects that medical practice and procedures may have upon levels of stress. The Board hopes that this package, together with its report published last year2 will assist members of the profession in caring for bereaved relatives, and will prompt recognition by both doctors and health service management of doctors’ needs in maintaining the balance of the humane professional. British Medical Association, BMA House, Tavistock Square, London WC1H 9JP, UK

J. B. L. HOWELL

1. Board of Science and Education. A stressful shift. London:

BMA, 1992.

2. British Medical Association. Stress and the medical profession. London:

Insurance and

BMA, 1992.

genetic testing

SIR,—The critics (Feb 20, p 495) of Professor Harper’sarticle (Jan 23, p 224) make some important points, such as "allowing the insurance industry to define the boundaries of community genetics would be a disastrous step" (Professor Brock and Dr Scott) and, with respect to applications for life insurance, "each case has to be assessed individually ..." (Dr Reynolds). However, they seem either to ignore the burden of Harper’s logic, or to deprecate his concern. Although they admit that most American insurance companies regard the carrier state for cystic fibrosis or Tay Sachs disease as pre-existing conditions, and there is a failure to distinguish between homozygous and heterozygous states in autosomal disorders, Brock and Scott nevertheless say they "cannot accept this view as an argument against genetic screening". There is little wrong about a family wishing to take advantage of the advances in molecular genetics to learn of the chances of disease

offspring, but I share Harper’s concern about widespread genetic screening to look for particular abnormal genes. Where does one stop? Who defines the range of spectrum of abnormalities to be insured or not insured against when the companies are referring to healthy traits as pre-existing conditions? Reynolds thinks that genetic testing will bring about advantages and disadvantages "which must be considered by society as a whole", but who is this "society as a whole"? Professor Harper’s three groups-the insurance companies, those being or likely to be tested, and professionals in medical genetics--should be seen as equal partners in this debate. Domination by one group can (wrongly) influence society with undesirable consequences-eg, Nazi Society’s attack on Hebrew genes,l aided by media propaganda to make a whole nation accept the unacceptable.2 Harper draws attention to "the risk of adverse consequences from finding of a harmless carrier state in recessive disorders such as cystic fibrosis or the haemoglobinopathies". When contacted in the USA by Professor Bowman about the harmless sickle trait, 41 %’ of 39 insurance companies admitted to loading the trait’s premium. "It is my understanding", adds Bowman, "that insurance companies generally test only Blacks for the sickle cell traits With the human genome project well on the way it is not inconceivable that some insurance companies will target healthy Jewish people for so-called pre-existing conditions. Genetic screening of Jews "has raised many important social and ethical issues", says Goodman,4 and although on the surface reasons for screening "are cogent enough, there is another side to the story". The frontiers of knowledge in molecular genetics present such a minefield of hitherto unheard of difficulties that we should all tread most carefully as we grope our S way through.

in their

Cromwell Hospital, London SW5 0TU, UK

F. I. D. KONOTEY-AHULU

Konotey-Ahulu FID. Genes and society, and society and genes. Legon, Ghana: fifth University of Ghana Alumni lecture on March 20,1980. 2. Konotey-Ahulu FID. Missing the wood for one genetic tree? In: Teplitz R, Loukopoulos D, eds. First international symposium on the role of recombinant DNA in genetics. Athens: P. Paschalidis, 1986: 105-16. 3. Bowman JE. Ethical, legal and humanistic implications of sickle cell programs. 1.

INSERM 1975; 44: 353-78.

Jewish people. Baltimore: Johns 1979: 450. 5. Weatherall DJ. Ethical issues and related problems arising from the application of the new genetics to clinical practice. In: Weatherall DJ, ed. The new genetics and clinical practice. Oxford: Oxford University Press, 1985: 181-93.

4. Goodman RM. Genetic disorders among the

Hopkins University Press,

Do arthritis

patients understand their prescriptions?

SIR,-Patients with rheumatic diseases need highly comprehensive health care, and recognition that every patient has considerable fears is essential to good management.1 Ideally the patient should be familiar with their disease, the drugs prescribed, and drug dosage, cost, and possible adverse effects. The informed patient is more likely to comply with a particular regÏmen,1.2 and, therefore, will report more reliably the effects, good or bad, of that regimen. Hence, failure of patients to keep to a well-founded drug regimen is one reason for unsuccessful treatment. In the developed world up to half all patients do not take drugs as prescribed and may stop treatment prematurely when they feel better. This action may be deliberate or it may arise through inadequate or misinterpretation of information.3 This study examined the factors that might be responsible for the lack of comprehension of a physician’s prescription. 60 patients with rheumatoid arthritis, 60 with systemic lupus erythematosus (SLE), 50 with gout, and 26 with osteoporosis randomly selected from the rheumatic disease unit outpatient clinics at Escola Paulista de Medicina were interviewed immediately after medical consultation. Demographic and clinical data were recorded (table). Standard questions were asked about the number of drugs prescribed, drug trade names, dosage, and frequency and length of use. Patient comprehension of the prescription was scored subjectively by one interviewer on a scale of 0-10 (10 = fully understood). The table shows mean patient comprehension scores and number of medicines prescribed in the various groups. In univariate