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  • 1. 1 Annals RCPSC, 30; 271-273: 1997 POLICY STATEMENT: PRINCIPLES OF END STAGE RENAL DISEASE CARE D.C. Mendelssohn MD, FRCPC, for the Professional and Public Policy Committee of the Canadian Society of Nephrology D.C. Mendelssohn, staff nephrologist, The Toronto Hospital, assistant professor of medicine, University of Toronto, Toronto, Ontario. Correspondence and reprint requests to: DC Mendelssohn MD, FRCPC The Toronto Hospital 200 Elizabeth St., 13 Eaton-239 Toronto, Ontario M5G 2C4 Tel. 416-340-4418 Fax. 416-340-0029 Email: dmendy@istar.ca
  • 2. 2 PRINCIPLES OF END STAGE RENAL DISEASE CARE This document was prepared by the Professional and Public Policy Committee of the Canadian Society of Nephrology. It was endorsed as official policy of the Canadian Society of Nephrology at the annual general meeting in Halifax, Nova Scotia on September 28, 1996. CSN Professional and Public Policy Committee B. Barrett (Newfoundland) L. Bell (Quebec - pediatrics) D. Churchill (Ontario) A. Fine (Manitoba) D. Froment (Quebec) G. Hercz (Ontario) D. Hollomby (Ontario) J. Kappel (Saskatchewan) K. Jindal (Nova Scotia) D. Landsberg (British Columbia - transplantation) D. Mendelssohn (Ontario - chairperson) P. Sohi (New Brunswick) K. Taub (Alberta) M. West (Nova Scotia - CSN Executive)
  • 3. 3 PRINCIPLES OF END STAGE RENAL DISEASE CARE PREAMBLE Canada has a well developed system for treatment of end stage renal disease (ESRD). For the past 30 years, ESRD patients have benefitted from high quality care because of vigorous training and research at Canadian universities, and funding of treatment by the health care system. Recently, it has become recognized that the ESRD treatment system is under stress. A well documented epidemic of ESRD is apparent throughout the Western Hemisphere1. In Canada, this threatens to outstrip the ability of our fiscally constrained provincial governments to fund renal programs. The ability of nephrologists to provide accessible, high quality care to renal patients is already less than ideal in a few provinces. 2,3. In particular, uniform accessibility is problematic, as seen in different treatment rates between and in different provinces4-6. The high tech, life sustaining but high cost treatments for ESRD seem increasingly to be in conflict with shrinking health care budgets and health care reform. In this context, the Canadian Society of Nephrology endorses the following principles, which focus on the provision of ethical, cost effective and optimum patient care. They are intended to educate
  • 4. 4 and inform policy makers, and other stakeholders, and to form the basis for the development of a consistent, proactive renal care system in each province. GENERAL PRINCIPLES 1) ESRD therapy is life sustaining. Denial of therapy means death in days, weeks or months. 2) Most dialysis patients perceive the quality of their lives to be reasonable or good, and it is often excellent after a successful kidney transplant7-9. Programs that support the achievement of optimal functional and vocational rehabilitation of renal patients are an important component of ESRD treatment. 3) All competent patients who wish to undergo dialysis and who might benefit should be offered therapy for ESRD regardless of age, gender, employment status, race, co-morbid condition, or physical or mental handicap. In those cases in which, after a trial of dialysis, patients perceives that they are suffering, and burdens exceed any benefit, nephrologists should recommend that withdrawal of therapy be considered. 4) Nephrologists should not recommend dialysis in inappropriate situations, for example, when there is no expectation of benefit. Nephrologists support recent efforts to arrive at a
  • 5. 5 10,11 consensus about appropriateness guidelines . Hospitals, physician malpractice insurers, and relevant federal and provincial legislators should provide input and should then unambiguously support these guidelines. 5) No rationing of dialysis can be sanctioned without full, informed public disclosure, and debate. Any discussion about rationing of dialysis should occur only in the context of a broader debate about rationing of health care in general. If publicly supported, criteria for rationing of dialysis should be clear, unambiguous, and uniformly applied across Canada. 6) Caring for ESRD patients requires unique medical and technical skills, and should be supervised by physicians with specialized advanced training in dialysis and/or transplantation. RESOURCES 7) A comprehensive and managed renal care system should be in place in every province. Secure and stable dedicated resources for treatment of ESRD should be reliably and predictably transferred to hospitals and other facilities in a timely manner, and flow directly to renal programs. Expansion and resource transfers should be anticipated based on epidemiological projections of ESRD incidence rates, and should occur before saturation of existing facilities occurs. Resource limitations should not impede the access of new patients. System performance should be monitored
  • 6. 6 continuously, with the ability to adjust if supply to demand mismatching is detected. To do this, the Canadian Organ Replacement Registry (now under the auspices of Canadian Institute of Health Information) should be enhanced, because a more sophisticated data collection and reporting system will be required. Nephrologists believe that a model of co-management of the renal care system, with government, providers and patients, is needed for planning and performance monitoring in this technically complex, rapidly evolving field. 8) All Canadian renal patients should have access to a full continuum of care, including diagnostic services, predialysis care, dialysis, and transplantation (if medically appropriate). PREDIALYSIS CARE 9) Early referral of patients with progressive kidney disease to dialysis centers is to be facilitated12,13. Efforts should be made to diagnose and treat potentially reversible factors, and institute measures to slow the rate of progression of chronic renal failure. The kidney disease of diabetes mellitus, now the leading cause of ESRD in Canada, seems to be particularly amenable to favourable modification of its course in the predialysis phase14-16. 10) Predialysis education, including information about potential risks, benefits and
  • 7. 7 outcomes, should be provided. The option to forego dialysis should be disclosed and decisions by competent patients should be respected. Written advance directives and discussion of treatment philosophy with proxy decision makers, should be encouraged. For those who want dialysis, predialysis interventions should be implemented that prepare a patient, so that dialysis access is in place, and a catastrophic onset with inpatient hospital stay is avoided. TRANSPLANTATION 11) Transplantation is the most cost effective therapy for ESRD and offers patients the highest possible quality of life17. Hence, transplantation is the treatment of choice for all medically suitable ESRD patients. Organ supply however, is increasingly lagging behind demand. Mechanisms to increase organ supply should be made a national priority. Innovative methods must be explored urgently. Such methods might include donor subsidies, living donor pools, living non-related donors, presumed consent legislation, required consent legislation, hospital incentives, and removal of hospital disincentives. Increased organ supply, and improved immunosuppressive therapy leading to longer graft survival, will reduce (but will not eliminate) the rate of expansion of the dialysis population.
  • 8. 8 MODALITY ISSUES 12) Provided it is medically appropriate, patients should be allowed to choose a dialysis therapy which suits them best, based on lifestyle, employment issues18,19. Modality innovations which may increase cost should be available to those who desire them, if they are beneficial in terms of survival, morbidity, vocational rehabilitation, functional status, or quality of life. Nephrology staff and patients should be as economical as possible in designing and choosing therapy20, but therapy should be suitable for a given patient. The quality of prescribed therapy should not be compromised because of resource constraints. 13) Home and self care, which generally are more cost effective 21, should be encouraged by renal care providers, but not be mandatory. 14) With respect to modality mix, nephrologists endorse the concept of encouraging home and community based care, and especially transplantation, for suitable patients. There will, however, always be an expanding need for full care, in-centre hemodialysis. Family breakdown, dysfunctional homes, severe comorbid medical conditions, extremes of age, transplant rejection, acute medical complications, acute renal failure, acute presentation of chronic renal failure, failure of continuous ambulatory peritoneal dialysis, abdominal disease and backup dialysis, all require adequate full care HD facilities.
  • 9. 9 15) Expansion of all forms of ESRD therapy should be accompanied by appropriate, parallel, funded expansion of backup facilities such as inpatient beds, nursing staff, radiologic facilities, operating room time, surgical aid, vascular access expertise, pharmacists, social workers and dietitians. 16) Optimal occupancy of a center HD facility is 85% of funded capacity 2, although it may be higher in a large unit. This will allow for unexpected new patients, employment schedules, backup of peritoneal dialysis, non center HD and transplant, vacations, and travelers. OTHER ISSUES 17) Dialysis treatment should be provided within a reasonable distance from home, and in the patients’ community if possible. Intolerable travelling distances create such difficulties for families and patients that this can compromise the quality of life obtained with dialysis. Where travel cannot be avoided, these expenses should not be borne the patient. 18) Access to appropriate additional medical or surgical therapy (e.g. coronary artery bypass surgery) or rehabilitation, nursing home and chronic care should not be denied to patients simply on the basis of the existence of ESRD.
  • 10. 10 19) Essential drugs which are required to prevent progression of disease or complications of disease should be made available to patients free of charge if they cannot afford to pay for them. These include erythropoeitin22, cyclosporin, other antirejection therapies, growth hormone23, antihypertensive medications, calcium, antihistamines, and vitamin supplements. Consistent interprovincial policies should be developed for coverage of supplies (such as blood pressure cuffs, glucometers, and scales), parking, home helpers, nutritional supplements, and transportation. 20) Independent Health Facilities can provide HD in a community setting, possibly at less cost than hospitals. This option is being developed in some provinces. Canadian nephrologists are concerned, however, that although higher acceptance rates and different case mix may be additional contributing factors, the American model of profit driven private hemodialysis, using cost containing solutions such as reduced numbers of nurses, fewer social workers and dietitians, and reduced quantity and quality of dialysis, has probably contributed to worse patient outcomes in the USA than Canada, and is unacceptable24-26. Adequate quality and quantity of staffing, clear standards of dialysis for IHF’s, and suitable integration into the ESRD system with well defined in- center HD backup arrangements are all essential.
  • 11. 11 REFERENCES 1) Port, FK. End Stage Renal Disease: Magnitude of the problem, prognosis of future trends and possible solutions. Kidney Int 48S50: S3-S6 1995. 2) Mendelssohn, DC, Chery, A, for The Toronto Region Dialysis Committee. Dialysis utilization in the Toronto Region from 1981-1992. Canadian Medical Association Journal 150:1099-1105, 1994 3) Choudry NK, and Naylor CD. Reflections on supply demand mismatch in dialysis services in Ontario. CMAJ 153: 575-581, 1995 4) Kjellstrand CM and Moody H. Hemodialysis in Canada: A First Class Medical Crisis. CMAJ150; 1067-1071, 1994 5) Canadian Organ Replacement Register, 1993 Annual Report, Hospital Medical Records Institute, Don Mills, Ontario, April, 1995. 6) Canadian Organ Replacement Register, 1992 Ontario Report, Canadian Institute for Health Information, Don Mills, Ontario, March, 1994.
  • 12. 12 7) Churchill, DN, Torrance GW, Taylor DW, et al. Measurement of quality of Life in end stage renal disease: The Time Trade-off Approach. Clin Inv Med 10: 14-20, 1987 8) Devins, G.M., Mandin, H., Hons, R.B., Burgess, E.D., Klassen, J., Taub, K., Schorr, S., Letourneau, P.K., and Buckle, S. Illness intrusiveness and quality of life in end-stage renal disease: Comparison and stability across treatment modalities. Health Psychology 9:117-142, 1990. 9) Evans, R.W., Manninen, D.L., Garrison, L.P., Hart, L.G., Blagg, C.R., Gutman, R.A., Hull, A.R., and Lowrie, E.G. The quality of life of patients with end-stage renal disease. NEJM 312:553-559, 1985. 10) Hirsch DJ, West ML, Cohen AD, and Jindal KK. Experience with Not Offering Dialysis to Patients with a Poor Prognosis. AJKD 23: 463-466, 1994. 11) Moss AH. To Use Dialysis Appropriately: The Emerging Consensus on Patient Selection Guidelines. Adv. Renal Replacement Therapy 2: 175-183, 1995. 12) NIH Consensus Statement-Morbidity and Mortality of Dialysis. Annals Int Med 121: 62-70, 1994 13) D.W. Eadington. Delayed Referral for Dialysis: Higher Morbidity and Higher Costs.
  • 13. 13 Seminars in Dialysis 8:258-260, 1995. 14) The Diabetes Control and Complications Trial Research Group. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. NEJMed 329:977-86, 1993. 15) Bennett PH et al. Screening and management of microalbuminuria in patients with diabetes mellitus Am J Kidney Dis 25: 107-112, 1995 16) Lewis EJ, et al. The effect of angiotensin-converting-enzyme inhibition on diabetic nephropathy. NEJM 329:1456-1462, 1993 17) Kiberd BA. Equitable allocation versus best outcome: competing economic and ethical strategies in renal transplantation. Annals RCPSC 25: 446-448, 1992. 18) Singer MA, MacKenzie TA, Bray DF et al. An analysis of the end stage renal disease program at the Kingston General Hospital: A demonstration project. Annals RCPSC 25: 441-445, 1992. 19) Prichard SS. Treatment modality selection in 150 Consecutive patients starting ESRD therapy. Peritoneal Dialysis Int. 16: 69-72, 1996.
  • 14. 14 20) Hirsch DJ, and Jindal KK. Cost-effective end stage renal care: opportunities and compromises. Annals RCPSC 27: 15-19, 1994. 21) Goeree R, Manalich J, Grootendorst et al. Cost analysis of dialysis treatments for end stage renal disease. Clin Inv Med 18: 455-464, 1995. 22) Muirhead, N, Bargman, J, Burgess, E, et al. Evidence based recommendations for the clinical use of recombinant human erythropoeitin. AM J Kidney Dis 26S1: S1 - S24, 1995 23) Fine RN. Recombinant human growth hormone in children with chronic renal insufficiency - clinical update: 1995. Kidney Int. 49S53: S115 - S118, 1996. 24) Mendelssohn, DC, Kriger, F, and Winchester, J. A comparison of dialysis in the United States and Canada. Contemporary Dialysis and Nephrology 14:27-31, 1993 25) Eichenwald, K. Mismanaged Care: The perils of dialysis. The New York Times Dec -6, 1995. 26) Klahr S. Anemia, dialysis, and dollars. NEJM 334: 461-462, 1996.