on whether to forego
treatment for a child, clear
family, patient and health
care personnel is essential.
That is a key recommendation in an AAP
policy statement — updated from 1994 — that
offers guidance on how
to promote the best-pos-sible end-of-life care for
The policy, Guidance
on Forgoing Life-Sustaining Medical Treatment
from the AAP Committee on Bioethics, Section
on Hospice and Palliative
Medicine and Committee on Child Abuse and
Neglect, is available at https://doi.org/10.1542/
peds.2017-1905 and is published in the September
issue of Pediatrics.
With the advancement of medical and surgical
technologies, pediatricians, parents and other family
caregivers have to confront when it is ethical to use
available interventions to sustain the life of a severely
ill child, always considering the child’s best interests.
Interventions that can involve life-sustaining medical treatment include assisted ventilation, medically
administered nutrition and hydration, renal replacement therapy, vasoactive infusions or implanted
electronic instruments such as cardiac defibrillators
or ventricular assist devices. In some cases, treatment also can include transfusions, supplemental
oxygen and various medications such as antibiotics
Listening to all voices
Input from specialists in palliative care, ethics, pas-
toral care and other disciplines can be helpful when
families and medical staffs are faced with how best to
proceed in a child’s care. Collaboration is common,
though every case is different, said Kathryn L. Weise,
M.D., M.A., FAAP, a lead author of the policy.
“Certainly, in some cases there are disagreements,
but I tend to think of it more as a need for every
person involved to listen to the values, hopes and
fears of all stakeholders in the case,
Weise, who is with the Center for
Ethics, Humanities and Spiritual Care at Cleveland
One example, she said, is a chronically ill child
with life-limiting illness who is dying. A child with
complex medical problems likely has input from
many different subspecialists, perhaps a gastroenterologist, a cardiologist and an infectious diseases
specialist, along with the general pediatrician. All
have developed a special relationship with the family and feel a responsibility about what happens to
“It can be very complex to manage communica-
tions with all of these providers,” Dr. Weise said.
“They may want to have input but may not have (all
the) expertise. So choreographing communications,
giving clear messages within the team but also to
the family, requires very careful communication that
can’t be rushed.”
The professional opinions behind treatment rec-
ommendations are critical to informing family de-
cision-makers even when these views conflict, the
If a child is in hospice care or hospitalized in
intensive care, primary care pediatricians may not
be making the bedside decisions, but they have an
essential role in helping the family through decision-making and communicating with hospitalists
and other staff members about the family’s values,
Dr. Weise noted.
Allowing the patient a say in his or her care also
is critical, according to the policy.
“Some children, mostly teens but sometimes
younger than that if they’ve had the illness for
awhile, also deserve to know as much as they want
to know communicated to them in an age-appro-
priate fashion so they are not left out,” Dr. Weise
said. “They may not be able to make decisions for
themselves but still deserve to be respected as a major
player as this unfolds.”
In all instances, the Academy and other organi-
zations support continuing palliative measures to
manage a child’s pain and suffering.
• Forgoing life-sustaining medical treatment
is ethically supportable when the burdens of
treatment outweigh benefits to the child. Communication should be respectful, truthful and
thorough among the medical and family/pa-tient decision-makers.
• Children are entitled to open and honest communication as age-appropriate.
• Ethics consultation can be useful to the health
care team and family.
• Understanding of institutional, regional, state
and national regulations related to forgoing
life-sustaining medical treatment, including
the Child Abuse Prevention and Treatment
Act, is important to practice ethically within
• While perceived disagreement among professionals can be stressful to families, the professional opinions behind treatment recommendations are critical for families’ decision-making.
• In rare instances, it can be ethically supportable to forgo life-sustaining medical treatment
without the family’s agreement if there is an
extreme burden of treatment with no benefit
to the patient beyond postponement of death.
• Physicians who decline to participate in limitation or withdrawal of life-sustaining medical
treatment due to their own moral, religious or
personal beliefs should continue to care for the
child until they can arrange for care by another
Balancing act: Weighing the decision to withhold
life-sustaining medical treatment
by Alyson Sulaski Wyckoff • Associate Editor
With advances in medical and surgical technologies, families and health care
professionals have to confront when the burdens of treatment may outweigh
benefits to the severely ill child. Honest, clear communication among all parties
• National Hospice and Palliative Care Organization,
• AAP policy (2013) Pediatric Palliative Care and
Hospice Care Commitments, Guidelines, and