Perinatal pathology: centralise or perish?

Authors


“You may take notes for twenty years, from morning to night at the bedside of the sick, upon diseases of the viscera, and all will be to you only a confusion of symptoms, a train of incoherent phenomena. Open a few bodies, this obscurity will disappear”

(Bichat)1.

Though containing sound advice this sentiment is expressed in the belief that all those ‘opening’ bodies see and record to a uniformly high standard. Unfortunately the human condition is such that this state of perfection is unattainable. However this should not provide an excuse for not striving to reach this standard. It should therefore be of concern both to pathologists and clinicians alike that once again surveys of the quality of perinatal autopsies, on this occasion from the Northern Region2 and from Northern Ireland3 reveal serious deficiencies in the perinatal pathology services within the National Health Service.

Though different methods of assessment were used by the two groups, they like earlier studies, have confirmed that only about half of the autopsies in these Regions reached acceptable standards. In the Northern Region only 51% reached the Royal College of Pathologists' minimum criteria, while in Northern Ireland 46.6% were considered inadequate. These figures are remarkably similar to those in the West Midlands Survey of 19874 and while the authors have noted an improvement in standards in the Northern Region there would seem to be little or no evidence of any general improvement in almost a decade. It is however of note that the Annual Report of the All Wales Perinatal Survey for 1996 reveals a significant improvement in the quality of autopsies associated with an increase in the proportion of autopsies referred to the specialist centre from 42% to 78%. While the proportion of unsatisfactory autopsies outside the specialist centre was 33% the overall proportion of unsatisfactory autopsies fell from 46% to 7% as a result of the changed referral pattern5. Though the Royal College of Pathologists has attempted to improve standards with the publication of guidelines6 it is clear they have either had little effect or that their effects have not yet been reflected in these series of perinatal autopsies. In addition efforts have been made to expose all trainees to perinatal pathology. Since this exposure may be for as little as two months, the minimum to fulfil College recommendations, it is perhaps not surprising that it has made little impact. It is notable that this exposure is similar to that of the non-specialist trainee to neuropathology, a discipline now almost entirely dependent on specialist neuropathologists, a route that perhaps should be taken by perinatal pathology (vide infra). I remain to be convinced that two months of perinatal pathology training which at best might include attendance at two perinatal mortality meetings and performance of a handful of autopsies, even with published guidelines to hand, is a proper and adequate grounding for the performance of an autopsy that might well influence the future reproductive behaviour of a bereaved family. That it is not seems to be borne out by the two current reports. In the past it was possible to learn by experience but today the combination of declining perinatal mortality and falling autopsy rates means that some pathologists will see too few cases to maintain any expertise they have acquired during their training let alone develop it further. In addition many of the apparently more interesting cases are transferred to tertiary referral centres for clinical management and on occasion autopsy.

Obstetrics, particularly fetal medicine and neonatology, are rapidly advancing areas of medicine and knowledge of these advances is essential to proper interpretation of autopsy data. In the face of many other demands few pathologists will keep abreast of such developments with the exception of those with a professed special interest in the subject. It is therefore not surprising that many pathologists are looking to opt out of providing perinatal pathology services locally and seeking assistance from regional centres, producing growing pressure for a centralised service despite the organisational, logistic and financial problems this may bring.

So where do we go from here? The status quo will in my opinion inevitably result in a further decline in autopsy rates until only highly selected cases remain to be examined by specialists. Failure to appreciate the potential benefits of opening the body in all perinatal deaths will mean permission for such examinations will not be sought and as a result even specialist pathologists could be deprived of a wide enough spectrum of cases to form the necessary basis of adequate experience.

There is no option but to change our current practice. The only logical route would seem to be that taken by neuropathologists, in developing a service based entirely on specialist pathologists, full time or part time, with a professed and accredited special interest, a role currently denied in Europe to paediatric pathologists who have, as yet, to obtain recognition as a sub speciality. Candidates for such posts should have completed the two year specialist training programme in perinatal and paediatric pathology. This may seem a denial of my previously expressed views' which were based on the difficulties of accommodating an entire regional workload in a regional centre, and the logistics of running such a service. However it is now my opinion that centralisation will be inevitable. It is at present occurring by default.

We should therefore be planning actively to introduce a service based upon accredited specialist departments, not only to ensure high standards but also to ensure that we retain a core of specialist pathologists familiar with clinical obstetrics and neonatal medicine who will train future generations of perinatal pathologists. If we do nothing the autopsy rate will inevitably fall, since few clinicians will be encouraged to seek consent from parents for an autopsy in the knowledge that about half of such autopsies will be unsatisfactory. How many patients would agree to treatment if they were aware that in half the cases it would not be given in a satisfactory manner?

In addition to the declining autopsy rate improving perinatal mortality rates are further reducing the number of autopsies. Unfortunately even in specialist centres autopsy rates have declined in recent years. In our experience this has been particularly notable among neonatal deaths, for reasons that are not entirely clear. There is an increasing belief in the accuracy of ante mortem diagnoses by clinicians and this may be conveyed to parents and influence their decisions concerning autopsy. There has been no validation of this belief since the decline in autopsies prevents confirmation of the clinical diagnosis. This decline may also delay or prevent the detection of new iatrogenic diseases related to modem neonatal intensive care which may only become apparent at autopsy8.

Recently it has been suggested that modem imaging techniques may be used to carry out examinations where parents are unwilling to give consent for an autopsy9. While these examinations may be helpful they cannot provide the depth of information obtained from a properly conducted autopsy. It must also be remembered that the validation of imaging techniques relies on the appropriate examination of the tissues that have been imaged and where there are discrepancies between the image and the post mortem findings it is the latter rather than the former which if competently performed should be considered the gold standard.

The logistic aspects of a centralised service can almost certainly be overcome in all but the remotest areas. Our own experience in the West Midlands with the CESDI Stillbirths at Term study in progress indicates that the provision of specially designed cooled caskets and placing contracts with a single undertaker to transfer the baby to the specialist centre creates few difficulties. Parents were usually happy to co operate with the study giving informed consent for the transfer of their baby whom we guaranteed would be returned within 72 hours.

It is however finding of the service which remains the greatest hurdle. In ideal circumstances a centrally funded national service would ensure both the provision of facilities for specialist examinations and financial security for the departments providing the service. It would allow the introduction of agreed standards that would have to be met if departments were to receive accreditation, thus ensuring all autopsies reached stated quality levels which could be audited. Encouragement of links between such centres could allow the development of tissue banks, exchange of histological material, sub specialisation in specific areas of perinatal pathology in certain centres (e.g. skeletal dysplasias, cardiac malformations etc), and regular contact between individual perinatal pathologists possibly via the internet. These additional costs should be included in central funding.

A second best option might be a levy exacted upon health authorities with maternity units, the levy being proportional to the work generated. This would divide the service into regions but would ensure financial security for provider units.

The current extra contractual referral system used by many specialist departments is the least satisfactory option because of the additional clerical and organisational difficulties it creates, as well as the uncertainty of lack of funds. It will be phased out if the new government carries out its pledge to remove the internal market from the health service although it is difficult to see what will replace it.

If we are to make progress and ensure the survival and development of the perinatal pathology services in the National Health Service there must be speedy yet wide consultation between clinicians, pathologists, management and those groups providing support for bereaved parents. The aims of these consultations should include the administration of specialist perinatal pathology centres, the standardisation of autopsy request forms and the clarification of the place of the autopsy in modem obstetrics and neonatal medicine. The reasons for the declining autopsy rate should be investigated10. Is it simply a reflection of parental attitudes or is it a reflection of the clinicians' approach to the autopsy? Are the right people seeking consent from the parents? Are they properly trained to discuss these matters with the parents?

In addition to the immediate clinical importance of the perinatal pathology service an autopsy report may play a pivotal role in both medical litigation and criminal prosecutions, cases sometimes standing or falling on such evidence. In the litigation field the demonstration that brain damage occurred prior to the onset of labour may well result in an individual clinician and or Trust being exonerated of blame for the loss of a baby, while the integrity of a family or the prosecution of a child abuser may depend in part or in whole on autopsy findings in an older infant. It is therefore of particular concern that in the report from Northern Ireland none of the autopsies performed on sudden deaths in infancy attained a good standard; indeed 20 of the 22 were considered poor, data which does much to substantiate the recommendations of the Clothier Report11 on the Beverly Allitt case that paediatric pathologists should be involved in the investigation of all such deaths. Few of us would consult a general surgeon today if we required a coronary artery bypass yet few bereaved parents are aware that specialised services do exist if the require a post mortem examination on their dead baby and few of those who have given consent for autopsy are aware that the standards of autopsy are so variable and are frequently inadequate. There is no reason why lower standards should be accepted after death, particularly when these standards would be unacceptable during life. While there are too few perinatal and paediatric pathologists to examine all perinatal deaths it is inevitable that all deaths cannot be examined by a specialist. A specialist service must be universally and equitably available. Expansion of the service is necessary and financial arrangements for its provision must be secured. There is nothing to be gained by an unplanned expansion of existing centres until the service becomes overloaded, the staff demoralised and the incidence of stress related illness increased. This will lead to curtailment of the service, resulting in the refusal of new cases and delays in the completion of reports.

If obstetricians and paediatricians believe that a specialist pathology service is essential then this has to be repeatedly emphasised by providers to purchasers of these services and their availability stipulated as a condition of future contracts. All obstetricians and paediatricians should receive some, training in perinatal pathology in specialist centres. General pathologists must consider whether it is appropriate to continue to provide perinatal pathology services in small units, and whether in larger non specialist units it is appropriate without an accredited specialist. Problems of funding and recruitment remain but the establishment of a national specialist service is essential to maintain the highest standards of perinatal pathology. Many babies die for reasons that remain obscure, even after exhaustive investigation. Many babies die of causes which are not identified because they are not investigated exhaustively or because those investigations that are carried out are inadequate. The former is due to lack of knowledge and is understandable; the latter is due to omission and is avoidable.

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