principles of end stage renal disease care
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TRANSCRIPT
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, FRCPCThe Toronto Hospital200 Elizabeth St., 13 Eaton-239Toronto, OntarioM5G 2C4Tel. 416-340-4418Fax. 416-340-0029
Email: [email protected]
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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)
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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
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provision of ethical, cost effective and optimum patient care. They are intended to educate
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.
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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
consensus about appropriateness guidelines10,11. 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
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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
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,
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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
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
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leading to longer graft survival, will reduce (but will not eliminate) the rate of expansion
of the dialysis population.
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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 effective21, 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.
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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 capacity2, 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
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patients simply on the basis of the existence of ESRD.
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.
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5) Canadian Organ Replacement Register, 1993 Annual Report, Hospital Medical
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19) Prichard SS. Treatment modality selection in 150 Consecutive patients starting
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