EDITORIALS * EDITORIAUX

Hemodialysis in Canada: a irst-class medical crisis

Carl M. Kjellstrand, MD, PhD, FACP, FRCPC; Henry Moody, MD, FRACP

T he triumph of long-term hemodialysis has beenone of the best-kept secrets of 20th-century med-ical science. About 1 million. people worldwide

now receive dialysis.'5 In Canada, as of Jan. 1, 1993,over 14 000 patients who had lost their kidney functionlong ago were still alive; over half were receiving dialy-sis. In 1994 almost 3000 patients 1 in 10 000 Canadi-ans will start dialysis, 1 every third hour.' The sur-

vival of these patients, if they have no other illnesses, iscounted in decades, with some now entering their fourthdecade. Dialysis patients have become professors,nephrologists and professional athletes. One dialysis pa-

tient outpaced his nephrologist in a 100-km ski race. Formost patients dialysis is the final treatment. In Canadafewer than one patient in three who begins dialysis can

expect to receive a kidney transplant; the others willspend the rest of their lives receiving dialysis.'

In this issue (see pages 1099 to 1105) David C.Mendelssohn, MD, and Anne Chery describe the crisisof hemodialysis in the Toronto region. From 1981through 1992 the number of patients starting dialysis in

Toronto more than doubled, whereas the number oftransplants remained steady. The year-end census figuresshow that the number of dialysis patients almost tripledbetween 1981 and 1992. These figures mirror the annualincidence and prevalence of dialysis in Canada from1981 to 1991. The number of patients per million popu-lation beginning dialysis has doubled, from 49.3 in 1981to 95.1 in 1991.' Mendelssohn and Chery point out thatthe number of available hemodialysis stations has justparalleled the number of patients needing them, but be-yond 1994 there are no plans for expanding facilities,despite the ever-increasing need. The authors rightlyconclude that new patients needing dialysis will there-fore die. There are no waiting lists for uremic patients.

The authors' conclusions are incontrovertible; onlytheir claim, that rationing will become necessary, is sur-

prising. Clearly, dialysis has always been rationed. Eversince the technique was perfected, in the late 1970s, re-

sources have never been available to everyone. Patientswho could have benefitted from treatment died, and livescontinue to be lost. Stopping the development of facili-ties will only make ongoing, hard-hearted rationingbased on age even more draconian.

Rationing dialysis

Mendelssohn and Chery's analysis confirms thatdialysis has always been rationed. The increase in inci-dence rates for patients starting dialysis has outpaced thegeneral population growth by more than 100%. Had theneed for dialysis been met the incidence rates shouldhave plateaued. The patterns of annual acceptance intoCanadian dialysis programs based on age are shown inFig. 1.' Most of the increase has been due to an increas-ingly liberal acceptance of older patients toward the end

Dr. Kjellstrand is professor ofmedicine and bioethics, and Dr. Moody is assistant professor ofmedicine, Division ofNephrology andImmunology, Department ofMedicine, University ofAlberta, Edmonton, Alta.

Reprint requests to: Dr. Carl M. Kjellstrand, Rm 2E3.31, Walter Mackenzie Centre, University ofAlberta, Edmonton, AB T6G 2B7

Resume: A cause de sa lenteur, le systeme bureau-cratique canadien est incapable de suivre la revolu-tion technologique de la dialyse pour en permettre ledeveloppement. Les nephrologues du Canada doiventrationner les services et se sont servi de l'age commeprincipal critere de selection, meme si les maladiesdu rein affectent surtout les personnes agees. Si leCanada offrait autant d'installations que les Etats-Unis, dans quelques annees, les programmes de dia-lyse du Canada accepteraient peut-etre deux fois plusde patients qu'a l'heure actuelle.

*- For prescribing information see page 1 1 65 CAN MED ASSOC J 1994; 150 (7) 1067

of the 1980s. Thus, although the number of patientsyounger than 65 years increased by only about 50% be-tween 1981 and 1991, the number 65 to 74 years in-creased by 150%, and the number older than 75 years in-creased by over 200%. In 1981 two out of three patients75 years of age and older, who would have been ac-cepted into dialysis programs in 1991, were left to die.We are not even close to providing the necessary care forall elderly patients who need dialysis.

How do other countries compare?

Another way to analyse the Canadian rate of accep-tance into dialysis programs is to compare it with the USrate. Although the US health care system is obviously inserious trouble the country's record with dialysis is ashining exception. No country can compete with theUnited States in its generosity toward patients with renalfailure. Since 1981 almost three times as many patientsin the United States as in Canada have been acceptedinto dialysis programs, and the gap is widening.'24 Japanhas the second-best rate, with twice as many patients be-ing accepted as in Canada.5 Canada belongs to a third

group of countries, which includes Austria, Belgium andIsrael, that accepts about 90 to 100 patients per millionpopulation each year.3

Fig. 1 shows the US rates of acceptance into dialy-sis programs based on age for 1990,2 which are clearlysuperior to the Canadian rates for that year, particularlyfor patients in the older groups. In 1990 the overall rateof acceptance into Canadian programs was half of that inthe United States, but a US patient 75 years of age orolder had three times the chance of receiving dialysisthan a patient of similar age in Canada. One could con-clude that if a patient is over 65 years of age and hasblood or protein in the urine he or she could obtain extramedical insurance and head south of the border to escapethe lack of facilities in Canada and protect against the ra-paciousness of the US health care system.

Why the high rate in the United States?

Why has the United States won the race for dialy-sis? The reason could be the US incentive-based fund-ing, whereby hospitals and physicians view dialysis as aprofitable activity. Dialysis in the United States has pro-

c3

.1. 400

..

.E .

.a._.. 2b.

280

.Awm~yr

Fig. 1: Rates of acceptance into Canadian dialysis programs between 1981 and 1991,' and rates for 1990 in the UnitedStates.2

1068 CAN MED ASSOC J 1994; 150 (7)

Year

LE IV` AVRIL 1994

vided a happy "shotgun" marriage between socializedmedicine (the government pays) and Yankee ingenuity.In Canada, where hospitals are on a budget, the patientin a peculiar and nasty way becomes the enemy of thesystem. Dialysis is expensive, and a limited budget pro-vides no incentive to accept patients for treatment. InCanada hospital administrators fight to keep dialysis outof hospitals. In the United States dialysis units competewith each other for patients through aggressive advertis-ing and blatant self-promotion. US newspapers revealdialysis units that have a good record, use up-to-datemachines and provide short treatments, which arefavourable to patients but may be risky. In the UnitedStates dialysis machines chase patients; in Canada mostpatients have to chase after far too few machines and areoften denied treatment.

Why age-dependent rationing?

Perhaps the easiest explanation for the ongoing ra-tioning of dialysis is that physicians were taken by tech-nologic surprise. Overnight, Quinton, Dillard and Scrib-ner6 solved the problem of long-term dialysis with theshunt. A technical barrier had been replaced by the ethi-cal dilemma of rationing. Initially, in Seattle, a lay com-mittee, using various social criteria, had to select one pa-tient from hundreds of good candidates to receivedialysis.7 About a decade later the committee was dis-banded because it was believed that everyone who couldbenefit from dialysis was receiving it. It was consideredthat many patients were excluded because of technicalcontraindications, and the large number of elderly pa-tients needing dialysis was less well known. Kidney dis-eases are diseases of elderly people, renal disease beingmore than 200 times more common in patients olderthan 70 years than in patients younger than 20. 28-0

The technology of dialysis has developed soquickly (dialysis now features more physiologic bathscontaining higher sodium and bicarbonate levels, asmaller, less compliant dialyser and ultrafiltration con-trol) that everyone who needs dialysis could receive it;however, the technologic revolution has completely out-stripped the capacity of the slow bureaucratic systemin Canada for development. It has forced Canadiannephrologists to act as rationing agents, or gatekeepers,and they have used age as the main selection tool, asdoctors always do when faced with shortages.""2

How is rationing done?

It is difficult to admit that one has been and is ra-tioning. It is easier to call rationing "futile," to escape anethical dilemma.'3 Many excuses for rationing have beenpromoted: often physicians with a low acceptance rateinto dialysis programs blame more generous physiciansas being poor doctors, not knowing when to say no orperforming dialysis for money. Another excuse is to

deny that the problem exists. This was perhaps best il-lustrated in Britain, where the Medical Services Groupof the Royal College of Physicians defended the low ac-ceptance rate with the claim that no one who could bene-fit from dialysis was denied the treatment.' However,some patients were excluded on the basis of criteria suchas "spoke no English." This attitude was vigorously at-tacked in the British Medical Journal,'4 by people whoneeded dialysis'5 and by those who were more skilled insecuring funds for dialysis.'6 Another prevarication usedby those forced to ration is to blame nonspecialists forfailing to refer appropriate patients.'7 The nephrologistmust teach other physicians and broadcast the benefits ofdialysis so that patients are referred. As well, someCanadians object that US physicians inappropriately ac-cept elderly patients into dialysis programs for moneyand that Canada is the defacto gold standard. This issimply not true. These Canadians are making a virtueout of necessity.

Studies of quality of life show that elderly dialysispatients are happier than younger patients and morereadily accept the limited lifestyle the treatment en-tails.'8 20 To let many elderly patients die of uremia be-cause the treatment may "misfire" in one patient is to ab-scond responsibility. Those who suffer while receivingdialysis should be offered the choice of stopping treat-ment. This involves very difficult discussions with thepatient and the family. That most nephrologists can riseto this challenge is evident: stopping dialysis is now thesecond and third leading cause of death in Canada andthe United States respectively."2'2' This is as it should be:a liberal intake to save the many and a liberal stopping tosave the few who suffer greatly when dialysis is unsuc-cessful. To let rationing on the basis of age masquer-ade as futility is to betray patients who rightly expectnephrologists to be their advocates, not economic gate-keepers for desperate and unresponsive administrationsand governments.

The administrators of many dialysis centres inCanada will probably argue, as have those in Britain,'4'22that they are not rationing dialysis and that anyone whocan benefit from dialysis will receive it. No physicianwants to have to say no to a patient who needs lifesavingtreatment. Thus the borders that prevent the receipt ofdialysis by those who need it but cannot be accommo-dated or are not ideal candidates are staked out far awayfrom the hospital. Why would one want to be confrontedwith "difficult" elderly patients when there are no facili-ties to treat them? The system not only is shaped byphysicians but also, in an insidious way, shapes them.

Nonexistent options

Although transplantation is sometimes pushed as asolution to the dialysis dilemma, it is not. During the last5 years rates of transplantation in Canada have stalled,whereas those of acceptance into dialysis programs have

CAN MED ASSOC J 1994; 150 (7) 1069APRIL 1, 1994

increased markedly. In Toronto only one patient in sixcan expect a transplant. The remaining 83% will receivedialysis until they die. Chronic transplant rejection is thefourth leading reason for patients to start dialysis. Simi-larly, increasing the use of continuous ambulatory peri-toneal dialysis (CAPD) is not a solution to the lack ofhemodialysis facilities. Although patients can receiveCAPD successfully for over a decade (Dimitrios G. Ore-opoulos, MD: personal communication, 1993), at 6 yearsless than one third are still receiving it.'` Patients whoreceive a transplant or CAPD need hemodialysis as abackup.

What is the true need?

Nobody knows the true need for dialysis. From therates of acceptance into dialysis programs,'. studies ofdeath certificates in Alberta and the United States"' andcomparisons of the dialysis situation in Canada to that inparts of the United States with similar demographic andsocial circumstances8"' we estimate that each year be-tween 150 and 200 people per million population arecandidates for dialysis. Canadian nephrologists are in-creasingly disturbed by the unsatisfactory dialysis sit-uation, particularly compared with that in the UnitedStates. A Canadian Society of Nephrology committee isstudying the situation. If Canada were to be as generousas the United States in making facilities available per-haps in a few years twice as many patients as now, orover 180 per million population, could be accepted intodialysis programs each year.

What can we do?

To address this intolerable situation we can presentit publicly, as Mendelssohn and Chery have done. Theauthors' passionate plea here and in the lay press" fortheir patients' cause cannot fail to touch.

As the authors illustrate, health care rationing be-longs in the public domain. It must never be performedwithout public scrutiny of the process. If politicians ap-portion an inadequate amount of money to keep patientsalive they will also have the blood of dead patients on

their hands. Bureaucrats cannot make arbitrary divisionsof money, claiming that it is now physicians' business.Finally, physicians must speak up and not acquiesce to a

system of covert evasion of responsibility. They mustensure that the life-threatening reality of political and fi-nancial legerdemain is publicly exposed, and they must

present the facts, however unpleasant and however badlythese may reflect on physicians. The wise use of moneyis everybody's business, but we are also our brothers'keepers, and we are all responsible.

Mendelssohn and Chery's analysis and our com-ments will be unwelcome by physicians who have notbeen efficient advocates for their patients' needs, hosp-ital administrators who are already swimming against

the economic tide, politicians who are faced with apressing economic need that has profound ethical impli-cations and everyone whose national pride will be stungby our unfavourable comparison of Canada with theUnited States. However, every country can learn fromanother, because no country is best at everything. TheUnited States can provide constructive insights into im-proving the management of end-stage renal disease inCanada, and Canada can offer many lessons for improv-ing the delivery of health care in the United States.

Society must grapple with the question of rationingdialysis, which can have only two answers: continued ra-tioning or the rapid deployment of new dialysis facili-ties. The only rationing tool that has been successfully,albeit unjustly, applied is the exclusion of older pa-tients.' '2 When one translates this into the grim realitythat our parents or grandparents, who built our healthcare system, will be sentenced to death if they have renalfailure it is hard to believe that Canadians would chooseto continue such rationing. The alternative is to expanddialysis facilities even faster than Mendelssohn andChery advocate.

Rationing will not be required if the following con-ditions are met.

* The rates of acceptance into dialysis programs forelderly patients plateau as they have for patients youngerthan 64.

* Every physician in Canada knows about the bene-fits of dialysis, understands that elderly patients are ac-ceptable candidates and willingly and liberally referssuch patients.

* Dialysis units compete for and are glad to acceptelderly patients with uremia.

* Every dialysis unit has a spare machine to wel-come an unexpected new patient.

Until then, elderly patients, who have paid for thesuperb health care system we now use, will be betrayed.By going public Mendelssohn and Chery have done agreat service in starting to break down the obstacles ofevasion, duplicity, illusion and ignorance that obstructthe path to solving a large and previously unrecognizedhealth care dilemma in Canada.

References

1. Canadian Organ Replacement Register: 1991 ABnlnIal Report,Hospital Medical Records Institute, Don Mills. Ont. 1993

2. Excerpts from the 1993 USRDS Annual Data Reporl. Am J Kid-neEv Dis 1993; 22 (4, suppl 2): IS-i 18S

3. Geerlings W, Tufveson G, Brunner FP et al: Combined report onregular dialysis and transplantation in Europe, XXI, 1990.Nephlrol Dial Transplant 1991; 6 (suppl 4): 5S-29S

4. End Stage Renal Disease Network 11, 1992 Annuiiial Report, RenalNetwork of the Upper Midwest Inc. St. Paul. Minn. 1993: 37-38

5. Japan?ese Dialy.sis Regi.stryn: 1985, 1986, 1988. Japanese Society

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of Nephrology, Tokyo

6. Quinton W, Dillard D, Scribner BH: Cannulation of blood vesselsfor prolonged hemodialysis. Trans Am Soc Artif Intern Org 1960;6: 104-113

7. Darrah JB: The committee. Trans Am Soc Artif Intern Org 1987;33: 791-793

8. Kjellstrand CM, Logan G: Racial, sexual and age inequalities inchronic dialysis. Nephron 1987; 45: 257-263

9. Kjellstrand CM, Shideman J: On the impact of and need forchronic dialysis and transplantation. Trans Am Soc Artif InternOrg 1988; 34: 328-332

10. Kjellstrand C, Hasinoff D: Exclusion of old patients from dialysisin Sweden, Canada and USA. In Oreopoulos D, Michelis M, Her-schorn S (eds): Nephrology and Urology in the Aged Patient,Kluwer Academic, Dordrecht, The Netherlands, 1993: 569-584

11. Wetle T: Age as a risk factor for inadequate treatment. [EJ JAMA1987; 258: 516

12. Callahan D: Setting Limits: Medical Goals in an Aging Society,Touchstone, New York, 1987

13. Kjellstrand C: Disguising unjust rationing by calling it futile ther-apy. Bioethics Bull 1992; 4: 1-3

14. Audit in renal failure: The wrong targets? BMJ 1981; 283:261-262

15. Ward E: Death or dialysis - a personal view. BMJ 1984; 289:1712-1713

16. Berlyne GM: The British dialysis tragedy. Nephron 1985; 41:305-306

17. Challah S, Wing AJ, Bauer R et al: Negative selection of patientsfor dialysis and transplantation in the United Kingdom. BMJ1984; 288: 1119-1122

18. Westlie L, Umen A, Nestrud S et al: Mortality, morbidity, and lifesatisfaction in the old dialysis patient. Trans Am Soc Artif InternOrg 1984; 30: 21-30

19. Auer J, Gokal R, Stout JP et al: The Oxford-Manchester study ofdialysis patients. Scand J Urol Nephrol Suppl 1990; 131: 31-37

20. Moody H, Moody C, Szabo E et al: Are old dialysis patientshappy, and can they fend for themselves? [abstr] Trans Am SocArtifIntern Org 1993; 39: 54

21. Neu S, Kjellstrand CM: Stopping longterm dialysis. An empiricalstudy of withdrawal of life-supporting treatment. N Engl J Med1986; 314: 14-20

22. Medical Services Study Group of the Royal College of Physi-cians: Deaths from chronic renal failure under the age of 50. BMJ1981; 283: 283-285

23. Mendelssohn D: Dialysis in Toronto: a crisis in waiting. Globeand Mail [Toronto] 1993; Oct 8: A27

Conferencescontinuedfrom page 1063

May 8-14, 1994: 37th Annual Health Executives Develop-ment ProgramIthaca, NYHealth Executives Development Program, N222 Martha Van

Rensselaer Hall, Cornell University, Ithaca, NY 14853-4401; tel (607) 255-8013

May 11-14, 1994: North American Society of Pacing andElectrophysiology 15th Annual Scientific Sessions

Nashville, Tenn.NASPE, 377 Elliot St., Newton Upper Falls, MA

02164-1126; tel (617) 244-7300, fax (617) 244-3920

May 12-13, 1994: Geriatric Psychiatry Conference -Addressing the Need (cosponsored by Youville GeriatricServices, Alberta Hospital Edmonton and Capital CareRegional Services; in conjunction with Marion MerrellDow and Janssen Research Foundation)

EdmontonAva Wood, Geriatric Psychiatry Service, Mental Health

Services, 5th Floor, 9942-108 St., Edmonton, AB T5K 2J5;tel (403) 427-4444, fax (403) 427-0424

May 12-14, 1994: Cardiovascular Technology SymposiumOttawaSusan Menzies, University of Ottawa Heart Institute,

201-1053 Carling Ave., Ottawa, ON K1Y 4E9; tel (613)761-4794, fax (613) 761-5323

May 12-15, 1994: Communication, Aging and Health-International Conference

Hamilton, Ont.Office of Public Relations, McMaster University, 1280 Main

St. W, Hamilton, ON L8S 4L8; tel (905) 525-9140,ext. 2959; fax (905) 521-1504

May 13-15, 1994: General Practice PsychotherapyAssociation 7th Annual Educational Conference

Mississauga, Ont.Dr. Dianne McGibbon, conference chair, 3 Gardenvale Rd.,

Toronto, ON M8Z 4B8; tel (416) 239-4644, fax (416)239-7428

May 14-16, 1994: Catholic Health Association of CanadaAnnual Convention

VancouverKeynote speaker: Dr. Donna MarkhamFreda Fraser, Director of communications, Catholic Health

Association of Canada, 1247 Kilbom Pl., Ottawa, ONK1H 6K9; tel (613) 731-7148, fax (613) 731-7797

May 18-20, 1994: Parent Resources Institute for DrugEducation (PRIDE) Canada Inc. 10th AnniversaryConference on Youth and Drugs

WinnipegMarly Zaslov, PRIDE regional coordinator, tel (204) 946-

9630, fax (204) 949-0768

continued on page 1105

APRIL 1, 1994 CAN MED ASSOC J 1994; 150 (7) 1071