renal failure—who cares?

2
1011 Schweiker, however, rejected the proposals of his aides, intending to maintain existing standards and expressing support for a strong Federal commitment to guaranteeing the safety and rights of more than a million nursing home patients. After several scandals the need for inspection cannot be denied. Reforms in the Medicaid and Medicare systems are also required, especially after the criticism they received from Senator John Heinz on the discovery of rampant fraud and abuse. He found them mainly responsible for a 620% rise in the costs of a hospital bed from 1965-80 due to the present system of "reasonable cost" reimbursement. With the construction of unneeded hospitals, and the excessive purchase and use of highly sophisticated equipment, the costs escalate with no one concerned to reduce them. In New York, a Deputy Attorney-General said that of 75 hospitals inspected, about half are likely to face, or have faced, civil or criminal charges. Changes are needed, but not the hastily considered ones that have immediately to be withdrawn. THE DISUNITED STATES Circumstances have no doubt changed since Lord Acton said of the U.S. in 1866 that "they had contrived a system of federal government which prodigiously increased the national power and yet respected local liberties and authorities", yet the essential problems remain the same-in particular, the relationship between the individual states and the Federal Government. The President has proposed to return many powers to the states, and so reduce the obligations of the Federal Government. This is a reversal of tendencies since 1917, but it is one that many legislators and governors would welcome so long as the financial implications were to be made quite clear. The President’s proposal is that Medicare should become a Federal concern, but that other welfare obligations, food stamps, for example, should become a local affair. Experience in New York State has revealed, however, that if welfare payments appear to be higher in one state than another, people will move. If this were to occur in the case of food stamps, families might soon become malnourished. The Massachusetts Food and Research Action Center has already reported that earlier cuts have resulted in some children becoming malnourished, and the medical director of the comprehensive child health program of the Boston Children’s Hospital has been quoted to this effect. The proposal deserves serious consideration, as does, indeed, quite the opposite solution-namely that all welfare matters should bcome a Federal responsibility, leaving the states to handle many of the other concerns now Federalised. CAPITAL CITIES WOES If the capital cities of the wealthy nations are compared, they have little to boast about when judged on their health indices, at least by their rates of infant mortality. The rate in Washington is the highest of any U.S. city, despite the fact that, overall, the city has one of the highest per caput incomes. The infant mortality rate was, in fact, higher than that reported from Jamaica and Costa Rica, not to mention Singapore, New Zealand, and Israel, and it rose by 10% from 1979 to 1980. It can be argued that the low rates in non- affluent societies show that better health does not depend on economic wealth. The high infant mortality rate is seen in other cities, and it is clear that the reasons for its existence are social, as the bulk of the births, in Washington at least, are to poor young mothers, usually unmarried, who are, perhaps, ignorant or incapable of attending clinics where they could get adequate antenatal care. Many of the infants are of low birth weight, especially among the black community, which comprises over 70% of the city’s population. Alcoholism, smoking, and the high rate of separation only worsen the picture. If this was the situation before the massive cuts in welfare programmes, it is not now likely to improve. Conference RENAL FAILURE—WHO CARES? DIALYSIS and transplantation are now routine treatments for end-stage renal disease (ESRD). When will Government and the medical profession take action to improve the low level of provision in the United Kingdom? At a multidisciplinary symposium sponsored by Travenol Laboratories and held last month in Norwich, many questions were asked for which there seem to be few answers, either because of ignorance or because of unwillingness to face unpalatable truths. The British nephrologists who participated, while enthusiastically welcoming the abandonment of arbitrary selection criteria for treatment, were sadly unable to offer tenable explanations as to why the provision of treatment for patients in the U.K. with ESRD falls so far behind that of comparable European countries and the U.S.A., where, supposedly, the same selection criteria exist and only patients with very severe systemic disease or organic brain disease are excluded. The figure most often quoted for acceptance of new patients onto dialysis and transplantation programmes each year is between 45 and 50 new patients per million total population.2 This figure excludes those over the age of 60 years, and a more realistic figure, if these patients and all those with serious coexisting disease are included, would be at least 150 cases per million population per annum or more. In Britain the corresponding acceptance rate for new patients lies somewhere between 25 and 30. Some nephrologists claim that they do not turn away new patients and, in fact, have 1. Renal failure-who cares? Parsons FM, Ogg C, eds. Symposium proceedings. Lancaster; MTP. (in press). 2. Renal failure A priority in health? London: Office of Health Economics, 1978 room to accept more. However, this simply reflects the uneven geographical distribution of facilities and it should be unreasonable to expect somebody to travel more than about 50 miles for regular hospital dialysis. CAPD Although the transplantation rate for kidneys (and other organs) is far too low,3 the real problem lies in failure to accept new patients for some form of dialysis treatment. This position has now improved slightly with the advent of continuous ambulatory peritoneal dialysis (CAPD), although the drop-out rate from this form of treatment, particularly as a result of peritonitis, can be very high.4 CAPD was greeted with much enthusiasm as a relatively cheap and effective form of dialysis, but there are serious doubts as to whether it will be a viable long-term treatment, comparable with haemodialysis- the "gold standard". Dr Roger Gabriel (St Mary’s Hospital, London) suggested that CAPD training could be carried out in district general hospital by non-specialist staff and that, in this way, more patients could be accepted for treatment. However, Dr Ram Gokal (Manchester), amongst others, disagreed. He said that this would be a very dangerous move since CAPD can pose as many practical problems as haemodialysis and to consider it an essentially easier treatment option and take it out of the hands of specialist medical staff would be a recipe for disaster. Moreover, back-up haemodialysis facilities must be readily available for CAPD patients. Costs What of the economic arguments and how far do these determine acceptance of patients for treatment? Dr Guido Pincherle, representing the D.H.S.S., said that in a system such as the N.H.S., where patients are not charged at point of use, costs are difficult to estimate. Current costing for the different treatments for ESRD is based upon a surprisingly small D.H.S.S. survey of 72 patients 3. Calne RY What has happened to charity? Br Med J 1982; 284: 998-99. 4. Chan MK, Baillod RA, Chuah P, et al. Three years’ experience of continuous ambulatory peritoneal dialysis. Lancet 1981; i: 1409-12.

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Page 1: RENAL FAILURE—WHO CARES?

1011

Schweiker, however, rejected the proposals of his aides, intendingto maintain existing standards and expressing support for a strongFederal commitment to guaranteeing the safety and rights of morethan a million nursing home patients. After several scandals theneed for inspection cannot be denied. Reforms in the Medicaid andMedicare systems are also required, especially after the criticismthey received from Senator John Heinz on the discovery of rampantfraud and abuse. He found them mainly responsible for a 620% risein the costs of a hospital bed from 1965-80 due to the present systemof "reasonable cost" reimbursement. With the construction ofunneeded hospitals, and the excessive purchase and use of highlysophisticated equipment, the costs escalate with no one concernedto reduce them. In New York, a Deputy Attorney-General said thatof 75 hospitals inspected, about half are likely to face, or have faced,civil or criminal charges. Changes are needed, but not the hastilyconsidered ones that have immediately to be withdrawn.

THE DISUNITED STATES

Circumstances have no doubt changed since Lord Acton said ofthe U.S. in 1866 that "they had contrived a system of federalgovernment which prodigiously increased the national power andyet respected local liberties and authorities", yet the essentialproblems remain the same-in particular, the relationship betweenthe individual states and the Federal Government. The Presidenthas proposed to return many powers to the states, and so reduce theobligations of the Federal Government. This is a reversal oftendencies since 1917, but it is one that many legislators andgovernors would welcome so long as the financial implications wereto be made quite clear. The President’s proposal is that Medicareshould become a Federal concern, but that other welfare

obligations, food stamps, for example, should become a local affair.Experience in New York State has revealed, however, that if welfare

payments appear to be higher in one state than another, people willmove. If this were to occur in the case of food stamps, families mightsoon become malnourished. The Massachusetts Food and ResearchAction Center has already reported that earlier cuts have resulted insome children becoming malnourished, and the medical director ofthe comprehensive child health program of the Boston Children’sHospital has been quoted to this effect.The proposal deserves serious consideration, as does, indeed,

quite the opposite solution-namely that all welfare matters shouldbcome a Federal responsibility, leaving the states to handle many ofthe other concerns now Federalised.

CAPITAL CITIES WOES

If the capital cities of the wealthy nations are compared, they havelittle to boast about when judged on their health indices, at least bytheir rates of infant mortality. The rate in Washington is the highestof any U.S. city, despite the fact that, overall, the city has one of thehighest per caput incomes. The infant mortality rate was, in fact,higher than that reported from Jamaica and Costa Rica, not tomention Singapore, New Zealand, and Israel, and it rose by 10%from 1979 to 1980. It can be argued that the low rates in non-affluent societies show that better health does not depend oneconomic wealth. The high infant mortality rate is seen in othercities, and it is clear that the reasons for its existence are social, as thebulk of the births, in Washington at least, are to poor youngmothers, usually unmarried, who are, perhaps, ignorant or

incapable of attending clinics where they could get adequateantenatal care. Many of the infants are of low birth weight,especially among the black community, which comprises over 70%of the city’s population. Alcoholism, smoking, and the high rate ofseparation only worsen the picture. If this was the situation beforethe massive cuts in welfare programmes, it is not now likely toimprove.

Conference

RENAL FAILURE—WHO CARES?

DIALYSIS and transplantation are now routine treatmentsfor end-stage renal disease (ESRD). When will Governmentand the medical profession take action to improve the lowlevel of provision in the United Kingdom?At a multidisciplinary symposium sponsored by Travenol

Laboratories and held last month in Norwich, manyquestions were asked for which there seem to be few answers,either because of ignorance or because of unwillingness toface unpalatable truths. The British nephrologists whoparticipated, while enthusiastically welcoming theabandonment of arbitrary selection criteria for treatment,were sadly unable to offer tenable explanations as to why theprovision of treatment for patients in the U.K. with ESRDfalls so far behind that of comparable European countries andthe U.S.A., where, supposedly, the same selection criteriaexist and only patients with very severe systemic disease ororganic brain disease are excluded.The figure most often quoted for acceptance of new

patients onto dialysis and transplantation programmes eachyear is between 45 and 50 new patients per million totalpopulation.2 This figure excludes those over the age of 60years, and a more realistic figure, if these patients and allthose with serious coexisting disease are included, would beat least 150 cases per million population per annum or more.In Britain the corresponding acceptance rate for new patientslies somewhere between 25 and 30. Some nephrologists claimthat they do not turn away new patients and, in fact, have1. Renal failure-who cares? Parsons FM, Ogg C, eds. Symposium proceedings.

Lancaster; MTP. (in press).2. Renal failure A priority in health? London: Office of Health Economics, 1978

room to accept more. However, this simply reflects theuneven geographical distribution of facilities and it should beunreasonable to expect somebody to travel more than about50 miles for regular hospital dialysis.CAPD

Although the transplantation rate for kidneys (and other organs) isfar too low,3 the real problem lies in failure to accept new patientsfor some form of dialysis treatment. This position has now

improved slightly with the advent of continuous ambulatoryperitoneal dialysis (CAPD), although the drop-out rate from thisform of treatment, particularly as a result of peritonitis, can be veryhigh.4 CAPD was greeted with much enthusiasm as a relativelycheap and effective form of dialysis, but there are serious doubts asto whether it will be a viable long-term treatment, comparable withhaemodialysis- the "gold standard". Dr Roger Gabriel (St Mary’sHospital, London) suggested that CAPD training could be carriedout in district general hospital by non-specialist staff and that, inthis way, more patients could be accepted for treatment. However,Dr Ram Gokal (Manchester), amongst others, disagreed. He saidthat this would be a very dangerous move since CAPD can pose asmany practical problems as haemodialysis and to consider it an

essentially easier treatment option and take it out of the hands ofspecialist medical staff would be a recipe for disaster. Moreover,back-up haemodialysis facilities must be readily available for CAPDpatients.

Costs

What of the economic arguments and how far do these determineacceptance of patients for treatment? Dr Guido Pincherle,representing the D.H.S.S., said that in a system such as the N.H.S.,where patients are not charged at point of use, costs are difficult toestimate. Current costing for the different treatments for ESRD isbased upon a surprisingly small D.H.S.S. survey of 72 patients

3. Calne RY What has happened to charity? Br Med J 1982; 284: 998-99.4. Chan MK, Baillod RA, Chuah P, et al. Three years’ experience of continuous

ambulatory peritoneal dialysis. Lancet 1981; i: 1409-12.

Page 2: RENAL FAILURE—WHO CARES?

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receiving the four possible treatments, carried out in 1980. Resultsfrom only one unit are available and, based on November, 1981figures, give annual costs of £ 10 600 for hospital haemodialysis,7000 for home haemodialysis, and ,?200 for CAPD.’Funds for renal units are allocated from the budgets of regional

health authorities, and this figure will vary greatly. Individualcosting is therefore not very meaningful when it comes to explainingwhat happens to patients who are either turned down for treatmentor never offered it in the first place. Since more money is needed andthe Government is not providing it, then maybe there is somethingmore to this end that nephrologists and other renal unit staff couldbe doing. At present this is largely left to local and national patients’organisations. Nephrologists must realise that their responsibilitygoes far beyond either clinical or academic involvement, althoughthere must be many who would not wish to believe it. They, after all,said Dr Vic Parsons (King’s College Hospital, London), mustconfront the unfortunate patient-or perhaps they have evolvedsubtle ways of getting round the whole distasteful business?Hospital doctors and general practitioners must also accept some

of the blame. All patients with progressive renal disease should bereferred for specialist assessment-this at least they must begranted. No-one has a legal right to treatment under the N. H.S., andif it is refused the patient’s only recourse ultimately is to theOmbudsman.The treatment of renal failure in the U.K. has reached a

watershed. Patients have been let down by those supposedlyworking for them and it is now a sad fact that they must bettereducate themselves and take positive action in order to gettreatment. "Shopping around" to different renal units in order to beaccepted for dialysis is not uncommon, but should not be necessary.

Patient participation in the symposium was welcome. Besidespatient delegates in the audience, the chairman of the NationalFederation of Kidney Patients’ Associations and three patients eachrepresenting a different mode of treatment (transplantation,haemodialysis, and CAPD) presented short papers reflecting theirown experiences. It was a pity that there were not more of theprevious day’s medical speakers present to listen to them.

TransplantationIn the U.K., according to Prof. Roy Calne (Cambridge), very far

from enough kidneys are transplanted.5 Transplantation offers thehope of indefinite renal function, full rehabilitation, and return offertility, and must be considered the treatment of choice.Graft survival has been improving slowly over the years. HLA

matching and preoperative blood transfusion contribute to this, but,as Mr Richard Wood (Oxford) maintained, it is becoming clear thatgood DR typing and, perhaps, platelet transfusions may produceeven better results. Steroids are now given in low dosage in manyunits as part of a standard immunosuppressive regimen; but withthe recent synthesis ofcyclosporin A and the improving results withits use, free from disfiguring side-effects, the future is lookingbrighter. So, the kidneys are there-why are they going into hospitalincinerators instead of into those who are dying while waiting forthem? It has been said that if carriage of donor cards were betterpublicised the problem would be quickly solved. Campaigns in thepast to encourage this have produced a good public response, but arenot the whole answer. Kidneys most commonly become availablefor transplantation in the emergency departments and intensivecare units of general hospitals, and it must be up to a member of themedical staff to think of the possibility of transplantation andthen to set the wheels in motion. This is not happening, andprincipally for two reasons. Firstly, a lack of awareness that theorgans are needed or that they could be used-the criteria fordetermining this are well documented.6 Secondly, apathy and areluctance to approach distressed relatives; donor cards can helphere, but the permanent solution can only be the better education ofmedical students and motivation of medical staff-an importantfunction of transplant coordinators, the newest and potentially oneof the most useful members of the transplant team.

5. U.K. Transplant Service Review 1981 Bristol: U.K. Transplant Service.6. Robson JG. Brain death Lancet 1981; ii: 365.

Nearly 20 years have passed since the N.H.S. embarked ona programme of renal replacement treatment intended

ultimately to provide it for all those in need.7 This venturewas an example to the rest of Europe, but the U.K. has nowbecome a "poor relation". Dr Frank Parsons (Leeds), an elderstatesman of British nephrology, issued a challenge to theD.H.S.S.: a solution must be found quickly-within weeks ormonths, not years.

7. Knapp MS. Renal failure-dilemmas and developments. Br Med J 1982; 284: 847-50.

In England Now

The best salesman I ever encountered was a hospital gardenerwho bred pedigree dogs as a supplementary source of income. Whena family appeared to buy a pup, the litter was quickly designated.Two were called ’show’ dogs, one was the ’runt’ and the rest werereferred to simply as ’pets’. The price was scaled accordingly. At theviewing, the gardener let it be known that he thought an ordinaryhouse pet would meet their needs. A show dog was not really for thelikes of them. This repeated remark invariably made the father buythe most expensive animal available. Eventually only two were left:the runt and one destined for Crufts. By using the same invertedsnob technique, the latter was easily disposed of. The last of thelitter was freely admitted to be not fit for showing. However, hesaid, it had such a lovable personality that his wife had demanded itfor herself. He could only let it go for an enhanced sum. The pup’sattractive character was emphasised by the way it scamperedforward to lick his fingers when he appeared (they had previouslybeen dipped in honey). No child could resist it.His spiritual colleague was a senior consultant when I was but a

medical pup myself. One day, through a series of misunderstand-ings, he removed a small boy’s tonsils and adenoids instead of thecongenital hernia for which he had been admitted. Panic ranthrough the administrative block, but the great man was unruffled.Leave it to me, he said. He met the lad’s father and after a short time

they parted, with the parent shaking him by the hand, thanking himprofusely and swearing he would not say a thing to a soul. "How didyou do it?" asked the hospital secretary. "Quite simply," replied thesurgeon. "I told him that when I examined the child, his tonsils andadenoids were so bad that they had to come out at once. I insisted hebe put at the top of the year long waiting list but, by jumping thequeue as I did, I was placed in a difficult position with my colleagues- and heaven only knows what would happen if those on thewaiting list ever found out. I will, of course, repair the hernia in afew months’ time." Pups and tonsils, it’s all in how you do it.

* * * ’

Giles was definitely in shock when I met him outside the hospital.Do you remember, he said, how it was when a consultant was calledinto the ward for an opinion? Did I remember? The patient had to beprepared, the bed and locker made tidy, and the instrument tray,covered with a chaste white cloth, placed close to hand. Sister, ofcourse, had to be placated. As the junior doctor I had to memorisethe leading features of the complaint, have the case notes ready, and,most important, make sure they were up to date. The visitor had tobe attended upon, from escorting him to the bedside to holding thetowel when finally he washed his hands. The last feature of theceremony was to walk with him to the door of the ward while he

dropped pearls of wisdom before me. It was quite a performance.Giles’s chagrin was occasioned by a visit to a distant ward. He had

been asked to give an opinion on a patient with rectal tenesmus. Heentered the ward at the appointed time but no-one was there to greethim. Eventually he traced the duty doctor to a small room where hereposed in a bright red open necked shirt, blue jeans, and sandals, allcovered in a loose-fitting white coat. He finally remembered whyGiles had been summoned and, after finishing his coffee, took Gilesinto the ward. He looked around the patients clustered beside thetelevision set and, in a loud voice called out, "Hands up the guy withthe sore backside!" The future is not what it used to be, said Giles, asI took him to the cafeteria for a resuscitative cup of tea.