United States it has been estimated that every year more than 40 000 infants die from any cause during their first year of life (ie, 110 every day). If even a small percentage of these unfortunate babies became organ donors, paediatric needs for solid organ transplantation, which are finite, would be met-yet we still lose 10-20% of our potential recipients while they wait for a suitable organ. Public education can probably do more to increase the supply of donor organs than scientific developments. Nevertheless, we must all work together to tackle the ethical and clinical issues. This effort may include use of organs from babies dying of anencephaly and the use of xenotransplantation. In addition, we are learning better how to manage young children with critical heart disease so that they may survive long enough to benefit from this life-enhancing therapy. When paediatricians and others fully embrace this remarkable therapy, they will, we believe, not only recommend transplantation but also counsel parents of dying infants about the opportunity for organ donation.
US Patient Self-Determination Act SIR,-Daniel Greenberg’s comments (Dec 7, p 1446), although sparky as usual, about the Patient Self-Determination Act need two additional points. Readers may think, as Greenberg says, that the Act applies only to patients whose care is financed by Medicare and Medicaid, and that it is applicable to the elderly under Medicare and the poor under Medicaid. The law affects all institutions receiving funds from these two programmes-ie, almost all US hospitals, skilled nursing facilities, hospice programmes, and home health agencies. All adult patients must be informed about their rights under state law to refuse or consent to treatment and about advance directives (the living will and health-care proxy). Further, a chart note must say whether the patient has a directive or not. Greenberg also says that the law was passed in reaction to the case of Nancy Beth Cruzan, a 30-year-old patient in a persistent vegetative state whose tragically prolonged life was the subject of Missouri and US Supreme Court rulings.l The Cruzan case did influence opinion in Congress, but it was only a milestone on a long road to passage. The law is the result mainly of the interest and hard work, since 1986, of Missouri’s Senator Danforth. His concern was that only a small number of Americans had advance directives. His and others’ work on this Act will result in millions of new conversations about preferences in terminal illness and about whom people wish to speak for them in health-care decisions if they cannot speak for themselves.2 Department of Internal Medicine, University of Virginia. Charlottesville, VA 22908, USA
Pediatric Heart Transplant Program, Loma Linda University Medical Center, Loma Linda, California 92354, USA
RICHARD E. CHINNOCK LEONARD L. BAILEY
AG, Wren C, Sharples PM, Hunter S, Hey EN. Hypoplastic left heart syndrome: more potential transplant recipients than suitable donors Lancet 1991;
Bailey LL, Nehlsen-Cannarella SL, Concepcion W, Jolley WB. Baboon-to-human cardiac xenotransplantation in a neonate. JAMA 1985; 254: 3321-29. 3. Peabody JL, Emery Ashwal S Experience with anencephalic infants as prospective 1989; 321: 344-50 organ donors. N Engl Med J 4. Ashwal S. Brain death in the newborn Clin Perinatol 1989; 16: 501-17. 2
JOHN C. FLETCHER
1. Annas GJ. Nancy Cruzan and the right to die. N Engl J Med 2 White ML, Fletcher JC The patient self-determination act: than hindrance JAMA 1991; 266: 410-12.
Health indicators in Yemen
1990, 323: 670-72 on balance, more help
SIR,-Some horrific health indicators from Yemen are outlined by your Nov 30 Round the World correspondent (p 1385). These include maternal mortality at 1500 per 100 000, infant mortality of 128 per 1000, and under-5 mortality of about 180 per 1000
Child heart donors SIR,-Dr Stuart et all have described a dearth of suitable donors for babies with hypoplastic left heart syndrome. Our experience suggests a brighter view of the supply/demand ratio. This centre has been transplanting hearts into babies with hypoplastic left heart syndrome since 1984We appreciate that transplantation in any age group is donor dependent; this was initially addressed by our completion of a cross-species transplant in 1984. We have also evaluated the potential of anencephalic donors,3 and several of our current policies designed to expand the donor pool seem relevant to Stuart and colleagues’ report. The donor/recipient size ratio has been successfully expanded. A weight ratio of 3 to 1 is not uncommon in our programme, and we have gone as high as 4 to 7. We have also made use of hearts from infants who have died after child abuse and sudden infant death (SIDS). Indeed, victims of child abuse represent the largest proportion of our infant donor pool; SIDS comes second. Coroners throughout the United States have simultaneously pursued legal and criminal investigations while cooperating with organ procurement agencies. Brain death is diagnosed in infants during their first post-partum week,’ and birth asphyxia is another important cause of death in infant heart donors (over 120 in our series). Finally, we view organ donation as an international resource. We travel throughout North America to obtain donor organs. Organ travel intervals (cold ischaemic times) exceeding 8 hours have been used in our programme without an observable detriment. Our aggressive use of distant procurements has increased our supply of donors. Long ischaemic times are not the answer but the strategy does permit the potential for national/international matching of donor hearts with the most appropriate recipients to be
exploited. If half the potential donors in Stuart’s report were disqualified because of their size and if all deaths due to non-accidental trauma were added (as they would be by us) to the donor pool, the donor total would have been significantly increased to at least 15. Stuart et al do not provide data on the total number of early newborn deaths, but this group of donors might also have added significantly to the total. Sadly, many potential transplant recipients would still remain without suitable donor organs in Stuart’s series. However, in the
livebirths. These shocking losses are balanced by the high fertility (8-4). The population is estimated to double by the year 2005 and treble by 2023, to over 23 million). Your correspondent, J. Richardson, comments that the discovery of petroleum will not have a profound effect on the country’s health "unless a serious attempt is made to tackle the population explosion". He describes no such activity in the offing. In fact, he fmds comfort in UNICEF’s support for extended programmes of immunisation. "This trend", he says, "bodes well for the future". But does it? King’s provocative reportl and your accompanying editorial suggest that it does not. Your readers should think again about the demographic trap and the dreadful dilemma of increased unsustainable population growth resulting from a further tilt in the balance between births and deaths. What is the UNICEF response to the challenge that life-maintaining strategies must be balanced by rate
family planning campaigns? 4911 N E 65th Street,
Seattle, Washington 98115, USA
1. King M Health is a sustainable state Lancet 1990; 336: 664-67. 2 Editorial. Nothing is unthinkable. Lancet 1990; 336: 659-61
Patient referral and NHS reforms S;R,—I have lately had a most chilling experience. A patient was referred to me by a consultant colleague in another health district. The patient was deeply jaundiced because of a hilar cholangiocarcinoma. I agreed to provide treatment and passed on the request to our contracts manager, who contacted her counterpart in the referring hospital. The response we received was that the patient could not be transferred to my care because that health authority had run out of resources to pay for the treatment of extracontractual referrals. The referring consultant took up the matter with his hospital managers, the decision was reversed (I do not know on what grounds), and the patient was transferred to my care.
cholangiocarcinoma is an uncommon tumour, and I and other colleagues working in the specialty of
surgery have for many years attracted
Investigation of these patients and the treatment options are complex. Although in most patients stenting may be the optimum treatment, there are some for whom it is not and a small proportion (perhaps 10-20%) for whom surgical resection is the best option. It is only in the hands of specialist surgeons, endoscopists, and radiologists that this judgement can be made, and appropriate treatment provided. This is the first such experience I have had of what has been a worrying spectre for many of us since the inception of UK National Health Service (NHS) reforms. We are only three-quarters of the way through this fmancial year, and at least one hospital no longer feels it can refer patients for specialist treatment outside its own referrals of this
boundaries. I wonder wherein lies the much vaunted increased freedom of choice for this patient, or indeed for his consultant? If fmancial constraints of this type were applied universally, then a substantial number of patients with this and other complex conditions might be denied the best treatment, and indeed the prospect of cure from their cancer. There is another relevant aspect to the debate on NHS reforms. I have treated more than 200 patients with hilar cholangiocarcinoma in the past ten years, whereas most physicians or surgeons in non-specialist units may see 2 or 3 per year. This experience that I and my colleagues in the specialty have accumulated has allowed development of improvements in treatment and the evaluation of their outcome, as well as provision of essential material for research into the basic biology of the cancer. Without referrals to specialist centres this progress in management and basic research will come to an abrupt end. This is something that those of us working in specialist areas have long feared. Cancer of the biliary tree may be only a specific marker for a much more general process that is taking place in our health service, and one that I feel should be more carefully addressed. I wonder whether any of my colleagues in other specialist areas are beginning to have such experiences? ,
Day-case surgery SIR,-Mr Kirby and Mr Skilton (Dec 14, p 1529) report that 57% (of 44) of patients having varicose vein surgery and 91 % (of 57) of those having inguinal hernia repair were against the idea of discharge on the same evening of their operation. Such high levels of dissatisfaction might have arisen because the patients had not been prepared and admitted for day surgery. A second factor could have been the timing of the questionnaire. Data we collected during 1990 on several types of operations, while developing a questionnaire for the Audit Commission, revealed a much lower level of dissatisfaction-15% of day cases reported both one week and one month after surgery that they would rather have been an inpatient.’ Although this is still an unacceptably high proportion; we found that 17% of inpatients would rather have been treated as day cases. Day cases and inpatients were mostly dissatisfied with the same factors-lack of parking facilities, things to occupy them in the ward, and information about their treatment. The main difference between the two groups was greater dissatisfaction with postoperative pain control in day cases (20% versus 5%; p