Conservative management of end stage renal disease and withdrawal of dialysis.
Article Type: Disease/Disorder overview
Subject: Chronic kidney failure (Diagnosis)
Chronic kidney failure (Care and treatment)
Palliative treatment (Research)
Hemodialysis (Methods)
Hemodialysis (Management)
Author: Stilos, Kalli
Pub Date: 04/01/2010
Publication: Name: CANNT Journal Publisher: Canadian Association of Nephrology Nurses & Technologists Audience: Trade Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2010 Canadian Association of Nephrology Nurses & Technologists ISSN: 1498-5136
Issue: Date: April-June, 2010 Source Volume: 20 Source Issue: 2
Topic: Event Code: 310 Science & research; 200 Management dynamics Computer Subject: Company business management
Geographic: Geographic Scope: Canada Geographic Code: 1CANA Canada
Accession Number: 229304363
Full Text: Reviewed by Kalli Stilos, RN, MScN, CHPCN(C), Advanced Practice Nurse, Palliative Care Consult Team, Sunnybrook Health Science Centre, Toronto, ON

This paper was written by the following four physicians: Dr.Murtagh from the Department of Palliative Care, Policy and Rehabilitation, King's College London, London, United Kingdom; Dr. Spagnolo from the Department of Educational Sciences & Board of Directors for Bioethics in Rome, Italy; Dr. Panocchia from the Department of Surgical Sciences, Section of Hemodialysis, Gemelli University Hospital, Catholic University, School of Medicine, Renal Program, Rome, Italy; and Dr. Gambaro from the Division of Nephrology and Dialysis, Columbus-Gemelli University Hospital, Catholic University, School of Medicine, Renal Program, Rome, Italy.

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This article outlines that the end stage renal disease (ESRD) population is progressively increasing in developing countries; the majority of patients being the elderly with multiple health issues and poor performance status. Nephrologists struggle with complicated decisions about the best therapeutic options available and what is best for their patients. As dialysis becomes more accessible in developed countries this creates an opportunity for therapy that most would not have had otherwise. The increased access to dialysis not only creates issues of "who should be put forward for dialysis", but "who, if any, should not be put forward for dialysis" (p. 179-180).

Within the ESRD patient group, there is a subgroup of patients that need to be acknowledged, for they are patients who do not start dialysis--they are the patients who are managed conservatively. This group of patients is important to study, as the care they require can be similar to those approaching end-of-life and palliative care. Little is known about this subgroup, as research studies tend to exclude them, providing a partial picture of the whole ESRD population. Determining which patients fall into the subgroup has become clinically and ethically challenging, along with what is the best practice for the patients who are not offered dialysis, or when it is withdrawn.

This article raises a number of issues. They include: the evidence around survival, quality of life, and typical course of illness following conservative management or dialysis withdrawal; criteria used for deciding on conservative management or withdrawing dialysis, and how they are justified; decision-making process when patients are cognitively impaired and cannot make decisions for themselves.

The decision criterion for initiating dialysis is controversial. Some nephrologists feel patients with irreversible, profound neurological impairment are not suitable for dialysis while others feel that no patient is too sick for dialysis. The Renal Physicians Association (RPA) and the American Society of Nephrology (ASN) developed guidelines for the withholding or withdrawing of dialysis: Shared Decision-Making in the Appropriate Initiation of andWithdrawal from Dialysis. In 1990 and 2005, the RPA/ASN conducted surveys of dialysis decision-making and found that "the decisions to withdraw dialysis with dementia have increased over time, and 80% of those interviewed had also requested bio-ethical consultation" (p. 180), pointing out the ethical difficulty physicians are faced with. Yet, only 50% of nephrologists follow the RPA/ASN guidelines (Holley, Davison, & Moss, 2007).

Conservative management is considered management without dialysis. It consists of vigorous management of the renal disease (physical or psychological symptoms). The following criteria are considered by nephrologists across countries when making decisions for conservative management: age, co-morbidities, cognitive state, anticipated symptoms and quality of life on the selected pathway, and anticipated prognosis.

Dialysis patients, in general, are older today, have increased medical issues and poorer performance status requiring many resources to make dialysis available to them. Nephrologists question the appropriateness of starting dialysis on these older patients. Research has been limited in comparing outcomes for older patients on dialysis and without dialysis. Research findings from the United States show that 80+ year-old patients commencing dialysis have a modest survival rate (Kurella, Covinsky, Collins, & Chertow, 2007). Judging a patient by his or her age also raises many ethical issues such as justice and equity. It is important that each patient is attended to in a holistic, patientcentred approach and the additional factors like patient wishes, quality of life, prognosis and concurrent medical issues are addressed in the equation.

Nephrologists question whether it is reasonable to dialyze patients with multiple co-morbidities. Levinsky (2003) notes the difficulty of predicting survival and quality of life for patients with co-morbidities and believes it is better to dialyze a patient who may not improve than to rule out dialysis as an option for a patient who may benefit. Research findings are mixed as to whether co-morbidities affect survival in the conservative management patients in comparison to the dialysis group.

Symptom management and quality of life are important aspects for patients in deciding on whether to proceed with dialysis or not. Symptoms are common to both the dialysis population and the conservatively managed group. Limited findings on the conservative management group vary from a slow decline, low symptom burden and performance status to a very quick decline. An argued point is that loss of quality of life on dialysis is not as important for older patients versus younger ones and, thus, moving towards a conservative management approach to care would be difficult to support for older patients. Knowing more about the disease trajectory will only help individualize treatment options with patients and their families.

Observational studies are available to nephrology practitioners to inform them on the topic of prognosis. The studies that exist all have small sample sizes. Smith et al. (2003) found that there was little difference in survival between the conservatively managed group and the dialysis group. Murtagh's (2007) study reviewed all patients greater than 75 years of age with stage 5 chronic kidney disease (CKD) in nephrology care and found that those who chose dialysis versus those who chose conservative management saw little survival advantage. One point raised is the use of the criteria such as high co-morbidity and functional status as influencing the option of dialysis. There are opposing views to this point that dialysis should be presented even if a patient has a prognosis of weeks.

Cognitive state is another factor that is being considered in the dialysis decisionmaking process. Approximately 70% of hemodialysis patients have some degree of cognitive impairment, which is often undetected (Murray 2008). For this reason, health care professionals need to be aware of the patients' understanding of their illness, treatment and side effects, and their ability to recall the information. There is a common principle that dialysis is not suitable for patients with advanced dementia or long-term vegetative state. There is a concern that, as the number of patients with dementia rises, practitioners might refuse dialysis as a treatment. The authors then question, "What is the definition of quality of life" for cognitively impaired patients and "the important distinction between 'best interests', as determined by the patients themselves (or their proxy when capacity is limited), and the estimation made by others about the value of their life" (p. 182). Three suggestions are made to address this issue for those who lack capacity: 1) physicians should engage in advance care planning discussions with patient/family early on in the patient's disease, 2) seek the opinions of family members/caregivers about the patient's wishes, and 3) appoint a substitute decision-maker when no guidance is available from family/caregivers. In addition, seek a second opinion from another independent physician or ethicist (not obligatory) if capacity is severely compromised.

Time-limited trials of dialysis are also an option in the RPA/ASN guideline on shared decision-making. The purpose of these trials is to illustrate to patients and their families the realities of treatment and to assess patient tolerance of the treatment. There are, however, no supporting findings to state whether time-limited trials achieve this goal.

American statistics indicate that 24.5% of dialysis patients choose to withdraw from dialysis and this is comparable to France where the figure is 20%. Murtagh, Cohen, and Germain's (2007) review of the literature on dialysis withdrawal found "wide variability between countries, cultures and individual centres" (p. 183). Highlighted in the evidence was that older patients, living alone, socially isolated, with high symptoms burden (particularly pain), increased co-morbidity, and poor quality of life were more likely to discontinue dialysis. A key point for health care professionals is to note the patient's social history/factors that can influence a patient from stopping dialysis.

We see cultural and national variations in who makes decisions to withdraw dialysis. In Western culture, it is more the patient's wishes and autonomy that drive dialysis withdrawal, whereas in southern European countries it is the physician's decision that weighs more in the decision-making process. The literature comments on the three decisionmaking views about who makes the dialysis decision: 1) primarily the health care professional decides; 2) primarily the patient decides; and 3) the shared decision-making model. The shared decision-making model is the preferential approach according to the literature.

Last, the use of advance directives is recommended in the RPA/ASN guidelines and is being utilized by many countries. Advanced directives are valuable when a patient is no longer able to express his or her own wishes and can aid physicians and family members in discontinuing dialysis. A point made is how advance directives do not include the discontinuation of dialysis, as dialysis is believed to be a routine part of the patient's life and not a life-sustaining measure. What dialysis patients look for in the advance care planning process is information on how these decisions will impact their day-to-day quality of life and not so much on statistics to guide their decision-making.

In summary, this article maintains that deciding between conservative management and discontinuing dialysis is becoming challenging, as health resources become scarce and as the population ages. Several factors come into play with these decisions such as the variation in clinical practice across health care settings, countries and cultures. What is lacking is strong evidence on patients who are managed conservatively and the kinds of symptoms they experience, quality of life issues they face, their disease trajectory pattern and how this patient subgroup impacts the entire ESRD population.

More data on the conservative (nondialytic) ESRD patients will provide health care professionals with a complete picture of the whole ESRD population. This information will also be useful to patients and their loved ones during the decision-making process of deciding between initiating dialysis or conservative (non-dialytic) management.

References

Holley, J.L., Davison, S.N., & Moss, A.H. (2007). Nephrologists changing practices in reported end-of-life decisionmaking. Clinical Journal of the American Society of Nephrology, 2, 107-111.

Kurella, M., Covinsky, K.E., Collins, A.J., & Chertow, G.M. (2007). Octogenarians and nonagenarians starting dialysis in the United States. Annals of Internal Medicine, 24, 940-947.

Levinsky, N.G. (2003). Too many patients who are too sick to benefit start chronic dialysis nephrologists need to learn to 'just say no'. American Journal of Kidney Diseases, 41, 728-732.

Murray, A.M. (2008). Cognitive impairment in the ageing dialysis and chronic kidney disease populations: An occult burden. Advances in Chronic Kidney Disease, 15, 123-132.

Murtagh, F.E.M., Cohen, L.M., & Germain, M.J. (2007). Dialysis discontinuation: Quo vadis? Advances in Chronic Kidney Disease, 14, 379-401.

Murtagh, F.E.M., Marsh, J.E., Donohoe, P., Ekbal, N.J., Sheerin, N.S., & Harris, F.E. (2007). Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrology Dialysis Transplantation, 22, 1955-1962.

Smith, C., Silva-Gane, M., Chandna, S., Warwicher, P., Greenwood, R., et al. (2003). Choosing not to dialyse: Evaluation of planned non-dialytic management in a cohort of patients with end-stage renal failure. Nephron Clinical Practice, 95, c40-c46.

Murtagh, F.E.M., Spagnolo, A.G., Panocchia, N., & Gambaro, G. (2009). Conservative (non-dialytic) management of end-stage renal disease and withdrawal of dialysis. Progress in Palliative Care, 17(4), 179-186.

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