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US Patient Self-Determination Act

SIR,-Daniel Greenberg’s comments (Dec 7, p 1446), althoughsparky as usual, about the Patient Self-Determination Act need twoadditional points. Readers may think, as Greenberg says, that theAct applies only to patients whose care is financed by Medicare andMedicaid, and that it is applicable to the elderly under Medicare andthe poor under Medicaid. The law affects all institutions receivingfunds from these two programmes-ie, almost all US hospitals,skilled nursing facilities, hospice programmes, and home healthagencies. All adult patients must be informed about their rightsunder state law to refuse or consent to treatment and about advancedirectives (the living will and health-care proxy). Further, a chartnote must say whether the patient has a directive or not.

Greenberg also says that the law was passed in reaction to the caseof Nancy Beth Cruzan, a 30-year-old patient in a persistentvegetative state whose tragically prolonged life was the subject ofMissouri and US Supreme Court rulings.l The Cruzan case didinfluence opinion in Congress, but it was only a milestone on a longroad to passage. The law is the result mainly of the interest and hardwork, since 1986, of Missouri’s Senator Danforth. His concern wasthat only a small number of Americans had advance directives. Hisand others’ work on this Act will result in millions of newconversations about preferences in terminal illness and about whompeople wish to speak for them in health-care decisions if they cannotspeak for themselves .2

Department of Internal Medicine,University of Virginia.Charlottesville, VA 22908, USA JOHN C. FLETCHER

1. Annas GJ. Nancy Cruzan and the right to die. N Engl J Med 1990, 323: 670-722 White ML, Fletcher JC The patient self-determination act: on balance, more help

than hindrance JAMA 1991; 266: 410-12.

Child heart donors

SIR,-Dr Stuart et all have described a dearth of suitable donorsfor babies with hypoplastic left heart syndrome. Our experiencesuggests a brighter view of the supply/demand ratio. This centre hasbeen transplanting hearts into babies with hypoplastic left heartsyndrome since 1984 We appreciate that transplantation in any agegroup is donor dependent; this was initially addressed by ourcompletion of a cross-species transplant in 1984. We have alsoevaluated the potential of anencephalic donors,3 and several of ourcurrent policies designed to expand the donor pool seem relevant toStuart 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 wehave gone as high as 4 to 7. We have also made use of hearts frominfants who have died after child abuse and sudden infant death

(SIDS). Indeed, victims of child abuse represent the largestproportion of our infant donor pool; SIDS comes second. Coronersthroughout the United States have simultaneously pursued legaland criminal investigations while cooperating with organ

procurement agencies. Brain death is diagnosed in infants duringtheir first post-partum week,’ and birth asphyxia is another

important cause of death in infant heart donors (over 120 in ourseries). 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 hourshave been used in our programme without an observable detriment.Our aggressive use of distant procurements has increased oursupply of donors. Long ischaemic times are not the answer but thestrategy does permit the potential for national/internationalmatching of donor hearts with the most appropriate recipients to beexploited.

If half the potential donors in Stuart’s report were disqualifiedbecause of their size and if all deaths due to non-accidental traumawere added (as they would be by us) to the donor pool, the donortotal would have been significantly increased to at least 15. Stuart etal do not provide data on the total number of early newborn deaths,but this group of donors might also have added significantly to thetotal. Sadly, many potential transplant recipients would still remainwithout suitable donor organs in Stuart’s series. However, in the

United States it has been estimated that every year more than 40 000infants die from any cause during their first year of life (ie, 110 everyday). If even a small percentage of these unfortunate babies becameorgan donors, paediatric needs for solid organ transplantation,which are finite, would be met-yet we still lose 10-20% of ourpotential recipients while they wait for a suitable organ.

Public education can probably do more to increase the supply ofdonor organs than scientific developments. Nevertheless, we mustall work together to tackle the ethical and clinical issues. This effortmay include use of organs from babies dying of anencephaly and theuse of xenotransplantation. In addition, we are learning better howto manage young children with critical heart disease so that theymay survive long enough to benefit from this life-enhancingtherapy. When paediatricians and others fully embrace thisremarkable therapy, they will, we believe, not only recommendtransplantation but also counsel parents of dying infants about theopportunity for organ donation.

Pediatric Heart Transplant Program,Loma Linda University Medical Center,Loma Linda, California 92354, USA

RICHARD E. CHINNOCKLEONARD L. BAILEY

1. Stuart AG, Wren C, Sharples PM, Hunter S, Hey EN. Hypoplastic left heart

syndrome: more potential transplant recipients than suitable donors Lancet 1991;337: 957-59.

2 Bailey LL, Nehlsen-Cannarella SL, Concepcion W, Jolley WB. Baboon-to-humancardiac xenotransplantation in a neonate. JAMA 1985; 254: 3321-29.

3. Peabody JL, Emery Ashwal S Experience with anencephalic infants as prospectiveorgan donors. N Engl J Med 1989; 321: 344-50

4. Ashwal S. Brain death in the newborn Clin Perinatol 1989; 16: 501-17.

Health indicators in Yemen

SIR,-Some horrific health indicators from Yemen are outlinedby your Nov 30 Round the World correspondent (p 1385). Theseinclude maternal mortality at 1500 per 100 000, infant mortality of128 per 1000, and under-5 mortality of about 180 per 1000livebirths. These shocking losses are balanced by the high fertilityrate (8-4). The population is estimated to double by the year 2005and treble by 2023, to over 23 million). Your correspondent, J.Richardson, comments that the discovery of petroleum will nothave a profound effect on the country’s health "unless a seriousattempt is made to tackle the population explosion". He describesno such activity in the offing. In fact, he fmds comfort in UNICEF’ssupport for extended programmes of immunisation. "This trend",he says, "bodes well for the future". But does it?

King’s provocative reportl and your accompanying editorialsuggest that it does not. Your readers should think again about thedemographic trap and the dreadful dilemma of increasedunsustainable population growth resulting from a further tilt in thebalance between births and deaths. What is the UNICEF responseto the challenge that life-maintaining strategies must be balanced byfamily planning campaigns?4911 N E 65th Street,Seattle, Washington 98115, USA WILLIAM PARSON

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 wasreferred 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 onthe request to our contracts manager, who contacted her

counterpart in the referring hospital. The response we received wasthat the patient could not be transferred to my care because thathealth authority had run out of resources to pay for the treatment ofextracontractual referrals. The referring consultant took up thematter with his hospital managers, the decision was reversed (I donot know on what grounds), and the patient was transferred to mycare.

Hilar cholangiocarcinoma is an uncommon tumour, and I anda few other colleagues working in the specialty of

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hepatopancreatobiliary surgery have for many years attracted

referrals of this sort. Investigation of these patients and thetreatment options are complex. Although in most patients stentingmay be the optimum treatment, there are some for whom it is notand a small proportion (perhaps 10-20%) for whom surgicalresection is the best option. It is only in the hands of specialistsurgeons, endoscopists, and radiologists that this judgement can bemade, and appropriate treatment provided.

This is the first such experience I have had of what has been aworrying spectre for many of us since the inception of UK NationalHealth Service (NHS) reforms. We are only three-quarters of theway through this fmancial year, and at least one hospital no longerfeels it can refer patients for specialist treatment outside its ownboundaries. I wonder wherein lies the much vaunted increasedfreedom of choice for this patient, or indeed for his consultant? Iffmancial constraints of this type were applied universally, then asubstantial number of patients with this and other complexconditions might be denied the best treatment, and indeed theprospect of cure from their cancer. ,

There is another relevant aspect to the debate on NHS reforms. Ihave treated more than 200 patients with hilar cholangiocarcinomain the past ten years, whereas most physicians or surgeons innon-specialist units may see 2 or 3 per year. This experience that Iand my colleagues in the specialty have accumulated has alloweddevelopment of improvements in treatment and the evaluation oftheir outcome, as well as provision of essential material for researchinto the basic biology of the cancer. Without referrals to specialistcentres this progress in management and basic research will come toan abrupt end. This is something that those of us working inspecialist areas have long feared. Cancer of the biliary tree may beonly a specific marker for a much more general process that is takingplace in our health service, and one that I feel should be morecarefully addressed. I wonder whether any of my colleagues in otherspecialist areas are beginning to have such experiences?Academic Department of Surgery,King’s College School of Medicine and Dentistry,King’s College Hospital,London SE5 9RS, UK IRVING S. BENJAMIN

Fall in deaths from respiratory disease

SIR,-In their report of recent trends in deaths from respiratorydisease, Dr Harvey and colleagues (Nov 30, p 1407) correctly pointout the effects of changes from 1984 in Office of PopulationCensuses and Surveys (OPCS) coding of underlying cause of death.These changes resulted in a fall for England and Wales in deathsassigned to acute causes such as pulmonary embolism

(International Classification of Disease 415-1) of 63% in 1984,compared with that in 1983. For pneumonia (486), the decrease was57% and for bronchopneumonia (485) 59%.These changes also resulted in an ostensible rise in the number of

deaths in 1984 in some chronic conditions. Especially affected werediabetes mellitus (250), up by 41 %, Parkinson’s disease (332) 72%,hemiplegia (342) 27%, cerebrovascular disease (430-438) 5%, andaplastic anaemia (284) 20%. Many other conditions showed

increases, in particular for diseases of the blood and blood-formingorgans, of the nervous system and sensory organs, and of themusculoskeletal system.These coding changes were fully reported by OPCS in 1985,1 and

have been referred to since then in annual reference volumes that

provide statistics of cause of death. Analysts of recent trends inmortality data should thus consult table 4 in this volume if theperiod of interest includes 1983 and 1984. This shows the effects ofthese changes for a detailed list of cause codes. OPCS is completinga review of these effects on recent mortality trends, and a report willbe published during 1992.

Office of Population Censuses and Surveys,Medical Statistics Division,St Catherine’s House,London WC2B 6JP, UK T. L. F. DEVIS

1 Office of Population Censuses and Surveys. Mortality statistics: cause, 1984. LondonHM Stationery Office, 1985. senes DH2, no 11

Day-case surgerySIR,-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 ofdischarge on the same evening of their operation. Such high levels ofdissatisfaction might have arisen because the patients had not beenprepared and admitted for day surgery. A second factor could havebeen 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 casesreported both one week and one month after surgery that theywould rather have been an inpatient.’ Although this is still an

unacceptably high proportion; we found that 17% of inpatientswould rather have been treated as day cases. Day cases andinpatients were mostly dissatisfied with the same factors-lack ofparking facilities, things to occupy them in the ward, andinformation about their treatment. The main difference betweenthe two groups was greater dissatisfaction with postoperative paincontrol in day cases (20% versus 5%; p<0’05), after-effects ofanaesthesia (15% versus 9%), and level of privacy (14% versus8%). These fmdings are consistent with those of Kirby and Skilton,in kind if not degree, and reinforce the need for surgeons andanaesthetists to pay especial attention to the management of thepostoperative period, whether this is spent in hospital or at home.To enable clinicians to monitor the outcome of their day cases,

the Audit Commission has made available a short, validated

questionnaire for assessing patients’ experiences of surgery.* User-friendly software to ease the analysis of the response is also available.

Department of Public Health and Policy,Health Services Research Unit,London School of Hygiene and Tropical Medicine,London WC1E 7HT, UK NICK BLACK

*To obtain copies, contact Publications Section, Audit Commission,Nicholson House, Lime Kiln Close, Stoke Gifford, Bristol BS12 6SU, UK(tel: 0272 236757).

1. Audit Commission. Measuring quality, the patient’s view of day surgery NHSOccasional Papers, no 3, May, 1991.

Recombinant factor VIII concentrate

SIR,-Coagulation factor VIII concentrates used to treat

haemophilia A can now be prepared by recombinant technology(rFVIII). Advantages of this product over concentrates made fromhuman plasma are foreseen; however, the cost will be greater. Eventhough rFVIII is not yet licensed, debate over its introduction hasstarted. We report on deliberations held recently in Canada.

Concentrates made from the fractionation of plasma haveresulted in side-effects, including allergic reactions andtransmission of viruses (notably HIV and hepatitis types B and C),and world-wide shortages have occurred when the demand foralbumin, another fractionation product, has fallen. On the otherhand, the quality of these concentrates has steadily improved so thatallergic reactions are now rare and virus transmission has beenvirtually eliminated. The exception is hepatitis B; however,vaccination is available for that. rFVIII promises absolute safetyfrom human virus transmission and, possibly, in the long run,unlimited supply and lower cost. However, there are two seriousdrawbacks. The product will be much more expensive at first, andclinical trials have suggested the possibility of an increasedincidence of circulating antibodies when infused into very young,previously untransfused, patients.An international conference was followed by a combined

meeting of the medical scientific advisory committee (MSAC) ofthe Canadian Hemophilia Society (CHS) and the CanadianHemophilia Clinic Directors Group (CHCDG). Included in thislarge group was representation from the Canadian Red Cross BloodTransfusion Service (CRCBTS) and invited experts, a clinicalepidemiologist, and a health-care economist. These events wereorganised by the Canadian Hemophilia Society, and funding wasprovided by this body, by the Federal Canadian Government, andby industry.