Shared Decision-Making in
the Appropriate Initiation ofand Withdrawal from Dialysis
Clinical Practice Guideline
Second Edition

Rockville, Maryland
October 2010

About the Renal Physicians Associationwww.renalmd.org

Since 1973 the Renal Physicians Association (RPA) has
been dedicated to representing and serving nephrology
practitioners in their pursuit and delivery of quality renal
health care. RPA is a non-profit 501c6 national nephrology
specialty medical association with over 4,000 members
serving kidney patients. Our programs focus in the areasof practice management, public policy and quality patientcare. We are the voice of nephrology practice and acommitted advocate to the renal community, payers andfederal policy makers. Our membership is comprisedof physicians, physician assistants, advanced nurse
practitioners and practice managers. These nephrology
healthcare providers are engaged in diverse activities,
including the practice of medicine, teaching, research,administration and they are devoted to improving thecare of patients with kidney disease and related disorders.
We provide timely and relevant programs along withcurrent nephrology tools and resources to make certain
our members maintain their highest level of professional
satisfaction. To obtain more information about RPA or to
become a member please contact us at (301) 468-3515 orby email at rpa@renalmd.org.

© 2010 by the Renal Physicians Association. All rights reserved. Printed in the United Statesof America. Except as permitted under the United States Copyright Act of 1976, no part ofthis publication may be reproduced or distributed in any form or by any means, or stored in a
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Recommendation SummaryTo develop their recommendations, the RPA Working Group used a priori analytic
frameworks regarding decisions to withhold or withdraw dialysis in adult and pediatricpatients with AKI, CKD, and ESRD. Systematic literature reviews were conducted toaddress pre-specified questions derived from the frameworks. The research evidence, case andstatutory law, and ethical principles were used by the Working Group in the formulation of
their recommendations.

Adult Patients
Establishing a Shared Decision-Making Relationship
Recommendation No. 1

Develop a physician-patient relationship for shared decision-making.
Shared decision-making is the recognized preferred model for medical decision-making
because it addresses the ethical need to fully inform patients about the risks and benefitsof treatments, as well as the need to ensure that patients’ values and preferences play a
prominent role. Because of the number and complexity of decisions involved in treating kidney
failure, a shared decision-making relationship is particularly important for patients with acutekidney injury (AKI); stage 4 and 5 chronic kidney disease (CKD); and stage 5 CKD requiring
dialysis end-stage renal disease (ESRD). Participants in shared decision-making should involveat a minimum the patient and the physician. In addition, patients should identify and include
a person who could serve as their decision-maker in the event they lose decision-making
capacity. If a patient lacks decision-making capacity, decisions should involve the person
legally authorized to make health care decisions on behalf of the incapacitated patient. This
person is often (though not always) a family member and will be called “the legal agent” inthe remainder of this document (see Section 10: Glossary for a full description ). With thepatient’s consent, shared decision-making may include family members or friends and othermembers of the health care team.

Informing Patients
Recommendation No. 2

Fully inform AKI, stage 4 and 5 CKD, and ESRD patients about theirdiagnosis, prognosis, and all treatment options.
In the setting of critical illness many patients with CKD will require urgent dialysis and thevast majority of patients with AKI will have multiple medical problems, in addition to kidney
failure. The concept of shared decision-making necessitates a multidisciplinary approach
including nephrologists, intensivists, and others as appropriate and decisions about acute renal
replacement therapy should be made in the context of other life-sustaining treatments. For
example, a decision to withhold dialysis in a patient agreeing to and receiving multiple otherforms of life-sustaining therapy could represent discordant treatment in the same way thatoffering dialysis to a patient who has decided to forgo other forms of life-sustaining therapy
might be inappropriate. Intensive care physicians need to be included in shared decisionmaking for kidney patients in the intensive care unit (ICU).

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Recommendation Summary
For ESRD patients, the shared decision-making options include: 1) available dialysis
modalities and kidney transplantation if applicable; 2) not starting dialysis and continuing
medical management; 3) a time-limited trial of dialysis, and 4) stopping dialysis and receiving
end-of-life care. Choices among options should be made by patients or, if patients lackdecision-making capacity, their designated legal agents. Their decisions should be informed
and voluntary. The renal care team, in conjunction with the primary care physician, should
insure that the patient or legal agent understands the benefits and burdens of dialysis and theconsequences of not starting or stopping dialysis. Research studies have identified a populationof chronic kidney disease patients for whom the prognosis is particularly poor. This population
has been found to include patients with two or more of the following characteristics: 1) elderly(defined by research studies identifying poor outcomes in patients who are age 75 years andolder); 2) patients with high comorbidity scores (e.g., modified Charlson Comorbidity Indexscore of 8 or greater); 3) marked functional impairment (e.g., Karnofsky Performance Status
Scale score of less than 40); and 4) severe chronic malnutrition (e.g., serum albumin level
less than 2.5 g/dL using the bromcresol green method). Patients in this population should be
informed that dialysis may not confer a survival advantage or improve functional status overmedical management without dialysis and that dialysis entails significant burdens that may
detract from their quality of life.

Recommendation No. 3

Give all patients with AKI, stage 5 CKD, or ESRD an estimate of prognosis
specific to their overall condition.
To facilitate informed decisions about starting dialysis for AKI, stage 5 CKD, or ESRD, allpatients should have their prognosis estimated and discussed, with the realization that theability to predict survival in the individual patient is limited. Depending on the setting, aprimary care physician, intensivist, or nephrologist who is familiar with estimating andcommunicating prognosis should conduct these discussions (see Recommendation No. 10
for communication strategies). For patients with ESRD, the “surprise” question “Would I be
surprised if this patient died in the next year?” can be used together with known risk factors
for poor prognosis: age, comorbidities, severe malnutrition, and poor functional status. For
patients with stage 5 CKD pre-dialysis, the estimate of prognosis should be discussed withthe patient or legal agent, patient’s family, and among the medical team members to develop
a consensus on the goals of care and whether dialysis or active medical management without
dialysis should be used to best achieve these goals. These discussions should occur as earlyas possible in the course of the patient’s kidney disease and continue as the kidney diseaseprogresses. For ESRD patients on dialysis who experience major complications that may
substantially reduce survival or quality of life, it is appropriate to reassess treatment goals,
including consideration of withdrawal from dialysis.

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Recommendation Summary
Facilitating Advance Care Planning
Recommendation No. 4

Institute advance care planning.
The purpose of advance care planning is to help the patient understand his/her condition,
identify his/her goals for care, and prepare for the decisions that may have to be made as
the condition progresses over time. For chronic dialysis patients, the interdisciplinary renalcare team should encourage patient-family discussion and advance care planning and include
advance care planning in the overall plan of care for each individual patient (see Section 10:
Glossary for definition of renal care team). The renal care team should designate a person to
be primarily responsible for ensuring that advance care planning is offered to each patient.
Patients with decision-making capacity should be strongly encouraged while they havecapacity to talk to their legal agents to ensure that the legal agent knows the patient’s wishes
and agrees to make decisions according to these wishes.
The renal care team should attempt to obtain written advance directives from all dialysis
patients. Where legally accepted, Physician Orders for Life-Sustaining Treatment (POLST)
or similar state-specific forms, also should be completed as part of the advance care planning
process. At a minimum, each dialysis patient should be asked to designate a legal agent in astate-specific advance directive. Advance directives should be honored by dialysis centers,
nephrologists, and other nephrology clinicians except possibly in situations in which theadvance directive requests treatment contrary to the standard of care (see Recommendation
No. 8 on conflict resolution).

Making a Decision to Not Initiate or to Discontinue Dialysis
Recommendation No. 5*

If appropriate, forgo (withhold initiating or withdraw ongoing) dialysis forpatients with AKI, CKD, or ESRD in certain, well-defined situations.
These situations include the following:
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Patients with decision-making capacity, who being fully informed and making voluntary
choices, refuse dialysis or request that dialysis be discontinued.

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Patients who no longer possess decision-making capacity who have previously indicatedrefusal of dialysis in an oral or written advance directive.

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Patients who no longer possess decision-making capacity and whose properly appointed
legal agents/surrogates refuse dialysis or request that it be discontinued.

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Patients with irreversible, profound neurological impairment such that they lack signs ofthought, sensation, purposeful behavior, and awareness of self and environment.

*Medical management incorporating palliative care is an integral part of the decision to forgo dialysis in AKI, CKD,
or ESRD, and attention to patient comfort and quality of life while dying should be addressed directly or managed bypalliative care consultation and referral to a hospice program (see Recommendation No. 9 on palliative care services).

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Recommendation Summary
Recommendation No. 6

Consider forgoing dialysis for AKI, CKD, or ESRD patients who have a very
poor prognosis or for whom dialysis cannot be provided safely.
Included in these categories of patients are the following:
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Those whose medical condition precludes the technical process of dialysis because thepatient is unable to cooperate (e.g., advanced dementia patient who pulls out dialysis
needles) or because the patient’s condition is too unstable (e.g., profound hypotension).

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Those who have a terminal illness from non-renal causes (acknowledging that some in thiscondition may perceive benefit from and choose to undergo dialysis).

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Those with stage 5 CKD older than age 75 years who meet two or more of the following
statistically significant very poor prognosis criteria (see Recommendations No. 2 and 3):
1) clinicians’ response of “No, I would not be surprised” to the surprise question; 2) highcomorbidity score; 3) significantly impaired functional status (e.g., Karnofsky Performance
Status score less than 40); and 4) severe chronic malnutrition (i.e., serum albumin lessthan 2.5 g/dL using the bromcresol green method).

Resolving Conflicts about What Dialysis Decisions to Make
Recommendation No. 7

Consider a time-limited trial of dialysis for patients requiring dialysis,
but who have an uncertain prognosis, or for whom a consensus cannot bereached about providing dialysis.
If a time-limited trial of dialysis is conducted, the nephrologist, the patient, the patient’s legal
agent, and the patient’s family (with the patient’s permission to participate in decision-making)should agree in advance on the length of the trial and parameters to be assessed during and at
the completion of the time-limited trial to determine whether dialysis has benefited the patient
and whether dialysis should be continued.

Recommendation No. 8

Establish a systematic due process approach for conflict resolution if there
is disagreement about what decision should be made with regard to dialysis.
Conflicts may occur between the patient/legal agent and the renal care team about whether
dialysis will benefit the patient. Conflicts also may occur within the renal care team or
between the renal care team and other health care providers. In sitting down and talking
with the patient/legal agent, the nephrologist should try to understand their views, provide
data to support his/her recommendation, and correct misunderstandings. In the process ofshared decision-making, the following potential sources of conflict have been recognized: 1)
miscommunication or misunderstanding about prognosis; 2) intrapersonal or interpersonal
issues; or 3) special values. If dialysis is indicated emergently, it should be provided whilepursuing conflict resolution, provided the patient or legal agent requests it.

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Recommendation Summary
Providing Effective Palliative Care
Recommendation No. 9

To improve patient-centered outcomes, offer palliative care services andinterventions to all AKI, CKD, and ESRD patients who suffer from burdensof their disease.
Palliative care services are appropriate for people who chose to undergo or remain on dialysis
and for those who choose not to start or to discontinue dialysis. With the patient’s consent,a multi-professional team with expertise in renal palliative care, including nephrology
professionals, family or community-based professionals, and specialist hospice or palliative
care providers, should be involved in managing the physical, psychological, social, and spiritual
aspects of treatment for these patients, including end-of-life care. Physical and psychologicalsymptoms should be routinely and regularly assessed and actively managed. The professionals
providing treatment should be trained in assessing and managing symptoms and in advanced
communication skills. Patients should be offered the option of dying where they prefer,including at home with hospice care, provided there is sufficient and appropriate support toenable this option. Support also should be offered to patients’ families, including bereavement
support where appropriate. Dialysis patients for whom the goals of care are primarily comfort
should have quality measures distinct from patients for whom the goals are aggressive therapy
with optimization of functional capacity.

Recommendation No. 10

Use a systematic approach to communicate about diagnosis, prognosis,
treatment options, and goals of care.
Good communication improves patients’ adjustment to illness, increases adherence totreatment, and results in higher patient and family satisfaction with care. Patients appreciatesensitive delivery of information about their prognosis and the ability to balance reality
while maintaining hope. In communicating with patients, the critical task for clinicians is tointegrate complicated biomedical facts and conditions with emotional, social, and spiritual
realities that are equally complex but not well described in the language of medicine. This
information must be communicated in a way that patients, legal agents, and families canunderstand and use to reach informed decisions about dialysis and transplantation options.
Patients’ decisions should be based on an accurate understanding of their condition and thepros and cons of treatment options. To facilitate effective communication, reliance upon amultidisciplinary approach including nephrologists, intensivists, and others as appropriate
is warranted. Decisions about acute renal replacement therapy in AKI should be made in
the context of other life-sustaining treatments. Intensive care physicians should be included
in shared decision-making for kidney patients in the ICU to facilitate discussions on global
disease or injury prognosis. Fellowship programs should incorporate training to help
nephrologists develop effective, empathetic communication skills, which are essential in caring
for this patient population.

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