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Tending to all their needs: Advance care planning for pediatric patients


B is a 12 year old boy who suffers from cardiomyopathy following an acute viral illness. His condition is stable, but without a heart transplant, doctors believe he will not survive more than six months. B and his parents have decided to forgo the transplant option. They understand that B will die, but want to optimize his comfort and normalize his life as much as possible during the time he has left. When the care team met with B and his parents, they wanted to know how they could make sure B and their wishes for his end-of-life care were respected.

Advance directives (AD) are legal documents that provide a mechanism for competent adults to participate in decisions about their healthcare when they are no longer able to speak for themselves. ADs began in response to the Patient Self Determination Act (PSDA) of 1990 as an opportunity to avoid undesirable medical interventions that would prolong a patient’s life regardless of the quality of that life.

Application of the PSDA regulations and creation of AD comparable documents in the pediatric setting has been slow to evolve, yet the need is clear. According to the American Academy of Pediatrics (AAP) nearly 4000 children and adolescents are within 6 months of dying from a complex chronic condition (CCC) and these children are living in the community and attending schools. This reality underscores the need to develop and implement some form of ADs for these children.

Key concepts

Despite all the miraculous technological advances in recent years, children still die from acute and chronic illnesses. As with adults, healthcare providers can do much to prolong the lives of children, but in some cases we must face the reality of a life-limiting diagnosis. When children and their families face such an illness the focus must be on optimizing quality of the life for the child and include a discussion of ADs.

Nurses need to understand key concepts and definitions commonly encountered in discussions about ADs, as listed below:

Key concepts and definitions associated with advanced directives

Key Concept Definition
Autonomy Individuals have the right to make their own decisions regarding health care
Emancipated Minor An individual under age 18 who meets specific legal and/or statutory requirements that allow them to consent to or refuse medical care as if they were an adult
Mature Minor Minor who is deemed mature enough to consent to or refuse treatment
Assent The agreement of an individual to participate in or refuse treatment
Consent Authorization to perform a treatment
Beneficence The obligation to promote the good of an individual
Nonmaleficence The obligation to prevent or minimize harm
Justice The obligation to treat individuals fairly
Advance directive (AD) A document indicating preferences for health care, typically for end-of-life care.
Living will: allows patients to provide instructions for care in the event they are not able to communicate their wishes.
Health Care Proxy: designates a surrogate (alternative) person to make decisions for the patient if the patient is not able to make his or her own decisions.
Physician Orders about Life Sustaining Treatment (POLST): standardized forms that document preferences for medical interventions and include with whom discussions have taken place.
Best Interest An imperfect standard used to determine how best to optimize the interests of an individual by balancing the benefits and burdens of different options, in consideration of both short term survival and long term flourishing goals.



Healthcare providers face several challenges related to implementation of ADs with a child or adolescent. The most common involves the implementation of an AD in the absence of a parent, such as when a child is seen in an emergency department (ED). Another is implementation of ADs in the school setting. Despite these challenges, the AAP supports parents’ efforts to ensure their and their children’s end-of-life wishes are honored and the Association for Children’s with Life Threatening or Terminal Conditions (ACT) has endorsed a document template for end of life decision making.

B and his parents would have come to their difficult decision after having many discussions with the people responsible for providing B’s health care. In this case, the care team ideally would have included a pediatric cardiologist, intensivist, primary care physician, palliative care specialist, parents, nurses, social workers, chaplain and child life specialist. Discussions about end-of-life care are difficult and sometimes conflict arises between key individuals. For example, the parents may want to continue aggressive treatment and the health care team does not, or as in B’s case, the parents choose palliation when members of the team still believe there are viable options for aggressive life-sustaining treatments. When conflict arises, the focus of discussions must be on the child’s best interest.

The discussion of clinical prognosis, understanding patient/family goals in the clinical context, and planning for future care are consistent with the principles of palliative care and family-centered-care and define the ideal Advance Care Planning (ACP) process used to complete an AD. The team caring for B would have examined the potential benefits and burdens or harms of the treatment options in light of B and his family’s values and goals, with the intent of maximizing the long-term benefits and minimizing the burdens. Nurses, by virtue of their close proximity and responsibility for daily care giving play a key role in assisting others appreciate some of the burdens associated with maintaining the health and quality of life for children with chronic illnesses and life-limiting diagnoses.

Development of an advance care plan

For adults, a written AD represents the outcome of a thorough ACP process. The AD as a legal document comes in two distinct forms, a living will or a designation of a surrogate decision maker and some states allow the use of a special document, the Physician Orders about Life Sustaining Treatment (POLST). Although these documents require the patient to be capable and at least 18 years old to be legal, the presence of such documents for pediatric patients should compel health care providers to give their contents great weight. In pediatrics, we look to parents as the legal surrogate to make decisions on behalf of their children but also include the child whenever possible in these discussions.

In one study of parents of children with special health care needs, parents wanted written guidelines for their children that dealt with critical life situations. Parents must be given a clear explanation and understanding of their child’s condition and prognosis. This will give them a better understanding of and control over the choice of options should their child become terminal. Parents of a child with a chronic condition are, in general, very concerned that their wishes be implemented, even in their absence, and a written plan allows for this. In another study, 95% of adolescent patients with a CCC said it would be helpful or very helpful to have an advance directive document.

Although B and his family may not be viewed as legally able to complete an AD they do have the right to avoid treatments that would unnecessarily prolong his life without improving the quality of that life. So they may create an Advance Care Plan (ACP) that clearly defines their wishes for end-of-life care using a written document that would describe the ethical obligations of the health care team to B. Raising the topic of a child’s death may be difficult, but advance care planning is helpful in that it assures parents an opportunity to preserve their child’s quality of life and avoid unnecessary suffering.

Creating an ACP is not a one time event. It is part of a careful stepwise process. Although there are always cultural, ethnic, and age related differences in approaching any patient and family about planning for end-of-life care, the process should include 6 key steps: Introduce the topic, particularly following an exacerbation of the disease/illness;

  • Promote a structured discussion about goals and values;
  • Document and distribute to key care providers the patient/family preferences for care;
  • Review and update the plan on a regular basis, especially with changes in condition; a
  • Act on the preferences when providing care; and
  • Evaluate the plan after any event that necessitates implementing the ACP.

ADs in the ED

When a child with a CCC and an AD experiences a life-threatening event related to the underlying conditions, the child’s parents may not always be present. When these children are seen in the ED health care providers are faced with a challenging dilemma. They along with the child’s parents want the child to receive only the care that was planned for and agreed to in advance by the child’s primary provider, parents, and the child/adolescent. Yet, in some cases ED providers are bound by hospital regulations or state statues that require immediate treatment be provided once the child is admitted.

One ED in a children’s hospital reported use of a one page “Emergency Department Outpatient Advance Directive” that can be used by parents and providers to outline the beliefs the parents hold about the use of comfort measures during a life threatening event that their child my experience. The document may not carry the legal weight of an AD but the process put in place by the hospital ensures that providers have the opportunity to consider the patient’s and his parent’s wishes regarding treatment choices.

This document also includes a checklist that parents can use to indicate their wishes related to “Do-Not-Attempt-Resuscitation” or as an alternative to a variety of specific options such as intubation, defibrillation, nutrition, or 911 transport to the hospital. In the case of the latter the parent is told, and acknowledges by his or her signature, that if 911 is called full resuscitation will be initiated. Both parent and physician and witnesses sign the document.

Easy access to records via the electronic medical records will enhance health care providers’ honor a child and family’s prior expressed wishes in situations like these.

ADs in schools

Use of ADs in the school setting presents a particular challenge. Findings from a national survey 80% of the schools did not have policies and 76% stated they would be unlikely to (or were uncertain if they could) honor Do-Not-Attempt-Resuscitation requests from parents. An ACP document would be a first step in beginning the necessary dialogue among parents, health care providers and schools to coordinate efforts to support children’s and families’ medical decisions. Both the AAP and the National Association of School Nurses support the use of ACP documents in schools.

Compelling guidance

Caring for children with life-limiting diagnoses is difficult. Nurses may feel tremendous moral distress when faced with these situations. However, it is important to remember that limiting life-sustaining aggressive treatments for a child such as B in our case example is not unethical. An ACP document may not carry legal weight but it provides compelling information to guide an ethical course of care one that respects the wishes of children and their parents.

Through ACP, nurses can respect the child’s and family’s dignity and allow them to realize the end of life experience they desire. In this way, nurses can also feel they have done their best to support the child and family at the end of the child’s life.

Lucia D. Wocial, PhD, RN, is nurse ethicist for Clarian Health and adjunct assistant professor, Indiana University School of Nursing, both in Indianapolis, IN. Marion E. Broome PhD, RN, FAAN, is dean and distinguished professor, Indiana University School of Nursing, Indianapolis, IN.


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