Recommendation Summary
Pediatric Patients
Establishing Family-centered Shared Decision-Making
Recommendation No. 1

Develop a patient-physician relationship that promotes family-centeredshared decision-making for all pediatric patients with AKI, CKD, and ESRD.
In addition to involving pediatric patients to the extent that their decision-making capacity
allows, the nephrologist should involve parents in determining health care decisions. If theparents request to involve other family members in shared decision-making, this request
should be honored. If the treating nephrologist believes that a pediatric patient’s parents
are making decisions inconsistent with the best interest of their child, the nephrologist
should involve medical ethics consultants or hospital ethics committees, mental healthprofessionals, pediatricians specializing in child abuse and neglect, mediators, or conflict
resolution specialists. These experts can assist in determining the reason for the parents’treatment choice and in determining an appropriate course of action. It is imperative thatthe nephrologist take steps to ensure that the pediatric patient has an adult advocate who iscapable of participating in health care decision-making. Court involvement to order medical
interventions over parental objections should be a last resort.
Family-centered shared decision-making process is recommended for all advance careplanning discussions in which treatment options are discussed and treatment decisions aremade. Education geared to the cognitive abilities of the parent and pediatric patient about
the medical condition, prognosis, and available treatment options is an important componentof the family-centered shared decision-making process. The pediatric patient’s primary care
physician, and in the case of the critically ill pediatric patient, their intensivist should beencouraged to participate in coordinating care related to treatment decisions made by thepediatric patient and his/her family. In the intensive care setting, patients with AKI will usually
have multiple medical problems and the concept of shared decision-making necessitates amultidisciplinary approach including nephrologists, intensivists, and others as appropriate, anddecisions about acute renal replacement therapy should be made in the context of other lifesustaining treatments.

Informing Patients and Parents
Recommendation No. 2

Fully inform patients with AKI, stage 4 or stage 5 CKD, or ESRD and theirparents about the diagnosis, prognosis, and all appropriate treatment
options. Inform children and adolescents in a developmentally appropriatemanner, and if feasible, seek their assent about treatment decisions.
Treatment options include: 1) initiating or continuing dialysis; 2) transplantation for ESRD; 3)
not starting dialysis and continuing optimal medical management; and 4) stopping dialysis andcontinuing to receive palliative treatment. The nephrologist and the medical team should makeevery effort to inform parents about the potential benefits and burdens of dialysis initiationn6

RPA Clinical Practice Guideline: Second Edition

Recommendation Summaryor dialysis withdrawal before providing or withdrawing treatment. In the rare circumstances
when this is not possible, parents should be informed as soon as possible about the rationale
for emergent initiation or withdrawal of dialysis and the efforts that were made to contact theparents before changing the medical plan.As a component of informed permission/informed
assent, and in keeping with the on-going process of both shared decision-making and advancecare planning, the treating nephrologist may determine that dialysis is no longer providing net
benefit (i.e., the risks or burdens outweigh the benefits, the underlying condition is progressive
and dialysis is only prolonging the dying process without improving the quality of life during
the dying process). In this case, the nephrologist and the medical team should approach thefamily and discuss the undue burden of dialysis given the patient’s medical condition andrecommend stopping dialysis and intensifying palliative treatment. This will typically occur
in the intensive care setting and intensivists should coordinate the shared decision making in
the context of other aspects of supportive care. Children and adolescents should be given theopportunity to communicate their feelings and perceptions regarding the benefits and burdensof dialysis to the extent they desire to do so and their developmental abilities and health statuspermits. When seeking informed permission/informed assent for discontinuing dialysis, themedical team should explicitly describe comfort measures and other components of palliative
treatment that will be offered.

Recommendation No. 3

Facilitate informed decisions about dialysis for pediatric patients with AKI,CKD or ESRD, discuss prognosis, potential complications, and quality of life
with the patient, parents, and/or legal guardian.
Nephrologists should rely on population-based survival data, using adjustments forconfounders, to discuss prognosis, potential complications, and quality of life with patients,
parents, and/or legal guardians. During these discussions, the nephrologist should acknowledge
that the ability to predict survival in the individual patient is difficult and should reassure thepatient and family that there will be ongoing opportunities for additional discussions regarding
prognosis over time. Given the likelihood that health status changes for the better or worse
are likely to occur in pediatric patients with AKI, CKD, and ESRD, discussions about survival
odds and physical and psychosocial outcomes should be repeated when dramatic changes
in health status occur. Each discussion regarding prognostic outcomes and patient/parent
decisions regarding treatment should be documented in detail and dated. This documentation
should be easily identified and accessible in the medical record. In the event of questionable
understanding of the prognostic data, it is recommended that additional resources beoffered to the pediatric patient and his or her family to ensure a reasonable understandingof likely outcomes and to allow for informed decision-making regarding treatment (seeRecommendation No. 8).

Resolving Conflicts about What Dialysis Decisions to Make
Recommendation No. 4

Establish a systematic due process approach for conflict resolution if
disagreements occur about dialysis decisions. Use conflict resolution
interventions when family members disagree with one another, whenchildren disagree with their parents, when families disagree with the health

Shared Decision-Making in the Appropriate
Initiation of and Withdrawal from Dialysis

7nRecommendation Summary
care team, or when the health care team disagrees about initiating, notinitiating, or withdrawing dialysis.
The following types of interventions are recommended to resolve conflicts: additional medicalconsultation(s); involvement of pastoral care; palliative care consultation; a multidisciplinary
conference including sources of support for the patient/family from within or outside theinstitution; short-term counseling or psychiatric consultation for the child and/or family and/orconsultation with a hospital-based ethics committee. When the health care team believes that
non-initiation of dialysis would constitute medical neglect, consultation with available childprotection specialists would be appropriate to help determine next steps. Court involvement
should be used as an intervention of last resort.

Facilitating Advance Care Planning
Recommendation No. 5

Institute family-centered advance care planning for children and adolescentswith AKI, CKD, and ESRD. The plan should establish treatment goals basedon a child’s medical condition and prognosis.
Family-centered advance care planning is recommended for infants with poorly functioning or
nonfunctioning kidneys due to genetic conditions and those with a non-reversible urological orkidney abnormality. In the event that the health care team has information that the viabilityof a fetus with suspected multisystem organ involvement is questionable, family-centeredadvance care planning should occur before the birth of the baby. This will allow the health careteam to be able to act decisively in light of the neonate’s health status and prognosis at thetime of delivery.
Advance care planning should be an ongoing process in which treatment goals are determined
and revised based on observed benefits and burdens of dialysis and the values of the pediatricpatient and the family. The renal care team should designate a person to be primarily
responsible for ensuring that advance care planning is offered to each patient. Patients withdecision-making capacity should be strongly encouraged to talk to their parents to ensurethat they know the patient’s wishes and agrees to make decisions according to these wishes.
Ongoing discussions that include reestablishing goals of care based on the child’s response
to medical treatment and optimal quality of life is the mechanism by which advance careplanning occurs. Discussions should include the pros and cons of dialysis as well as potential
morbidity associated with dialysis. Kidney transplantation should be discussed if appropriate.
Children and adolescents should be allowed to participate in advance care planning
commensurate with their preference and developmental status. Parent or pediatric patientquestions regarding discontinuation of dialysis if the patient’s medical condition becomesirreversible and non-responsive to currently available treatments should be addressed
frankly. Such questions can be used as a springboard for obtaining information about parent
and child wishes regarding end-of-life care. Assurance should be given that the pediatricpatient’s comfort is paramount in the event that dialysis is discontinued. In addition, suchquestions should be used as an opportunity to explicitly describe comfort measures and othercomponents of palliative care.

n8RPA Clinical Practice Guideline: Second EditionRecommendation Summary
Making a Decision to Not Initiate or to Discontinue Dialysis
Recommendation No. 6

Forgo dialysis if initiating or continuing dialysis is deemed to be harmful,of no benefit, or merely prolongs a child’s dying process. The decision toforgo dialysis must be made in consultation with the child’s parents. Givechildren and adolescents the opportunity to participate in the decision toforgo dialysis to the extent that their developmental abilities and healthstatus allow.
An example of a clinical situation in which forgoing dialysis is often considered is an infant
with multisystem organ failure for whom dialysis would be burdensome and would serve
only to prolong dying. Forgoing dialysis should also be considered for a pediatric patient
whose kidney failure is a consequence of a primary health condition that is non-reversible,non-treatable, and terminal and for whom dialysis would cause undue suffering. Infants orchildren who would otherwise be expected to survive for years with conditions causing severe
neurologic impairment and who develop ESRD should ordinarily not undergo dialysis ortransplant. Examples might be an infant with anencephaly or severe porencephaly, or a childwith a severe progressive demyelinating condition. In children with severe developmental
disabilities, clinicians will need to discuss with parents the balance of the benefits to burdensof prolonging life with dialysis. An intensification of palliative care treatment should occur inconjunction with any decision to forgo dialysis.

Recommendation No. 7

Consider forgoing dialysis in a patient with a terminal illness whose longterm prognosis is poor if the patient and the family are in agreement withthe physician that dialysis would not be of benefit or the burdens would
outweigh the benefit.
In pediatric patients who experience major complications from dialysis that may substantiallyreduce survival or quality of life, it is appropriate to discuss and/or reassess treatment goals,
including considering forgoing dialysis or withdrawing dialysis and initiating or increasing theemphasis on goals commensurate with palliative care. Alternatively, it is reasonable to initiate
dialysis for patients with AKI or ESRD who have chronic illness from a non-kidney cause inwhom outcome studies have been favorable. For example in HIV-associated nephropathy,dialysis has the potential to improve the quality of life in children.

Recommendation No. 8Consider the use of a time-limited trial of dialysis in neonates, infants,children, and adolescents with AKI or ESRD to allow for the assessment ofextent of recovery from an underlying disorder.
In an intensive care setting, neonates, infants, children and adolescents with AKI or ESRD as aresult of an underlying disorder may be candidates for initiating time-limited trials of dialysis.
The purpose of such a trial would be to establish the extent of recovery from the underlying
disorder and/or to determine the balance of benefits to burdens that continued life enabled
by dialysis provides to the child. The initiation of dialysis in conjunction with extra-corporeal

Shared Decision-Making in the Appropriate
Initiation of and Withdrawal from Dialysis

9nRecommendation Summary
membrane oxygenation (ECMO) is an example of a time-limited trial. It is considered timelimited in that the dialysis is most often discontinued when ECMO is withdrawn due to patient
non-viability.

Providing Effective Palliative CareRecommendation No. 9

Develop a palliative care plan for all pediatric patients with ESRD fromthe time of diagnosis and for children with AKI who forgo dialysis. The
development of a palliative care plan is a continuation of the process ofadvance care planning and should be family-centered.
The terminally ill child, family and child’s physician(s) should be involved in developing
and executing a palliative care plan, based on their preferences concerning goals of careand decisions regarding testing, monitoring, and treatment. With the patient and family’spermission, health care professionals with expertise in hospice and palliative medicine should
be involved in co-managing the medical, psychosocial, and spiritual aspects of end-of-lifecare for the child and family. The nephrology team along with the child’s pediatrician andother medical providers should offer bereavement support to the patient’s family. In thecase of a long-standing relationship with the pediatric patient, nephrology team members
are encouraged to send a condolence card to the patient’s family. Nephrology team members
should be given complete autonomy regarding attendance at a pediatric patient’s funeral ormemorial service. Nephrologists and the child’s health care team are strongly encouraged toseek support, in dealing with the child’s dying process and death in the event that that thesituation causes significant stress that interferes with baseline functioning at work or home.

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RPA Clinical Practice Guideline: Second Edition