Ethical & Legal Requirements for Pediatric Patients

As described in the overview of Ethical & Legal Requirements there are seven checklists available to ensure the correct requirements are followed when making end-of-life decisions. These requirements are based on the nationally recommended ethical framework and they’re codified in NYS Public Health Law. Two of these checklists may be used with children. First, there is the NYSDOH Checklist for Minor Patients and second, for children who also have a developmental disability the OPWDD Checklist is used. This page will focus on the Checklist for Minor Patients; a separate page is dedicated to patients who have developmental disabilities and lack capacity to complete a health care proxy or make medical decisions.

Since 2010, MOLST has been approved by NYSDOH for use in minor patients in all care settings, including the community. The NYSDOH MOLST Checklist for Minor Patients is designed to help physicians, nurse practitioners, physician assistants, and other professionals involved in the conversations to ensure that all orders to withhold/withdraw life-sustaining treatment on seriously ill children are done legally and ethically. These requirements must be followed whether the orders are written in a chart, on an old non-hospital DNR, or on a MOLST form. Just as with adult patients, using the specific NYSDOH Checklist for Minor Patients is not mandatory, but the items captured on the checklist are mandatory and must be otherwise documented in the chart if the checklist is not used. A MOLST Chart Documentation Form for Minor Patients that aligns exactly with the NYDSOH Checklist is also available and recommended for use. The eMOLST system ensures the correct process is followed every time and generates the appropriate documentation forms.

Recognizing Pediatric Patients Appropriate for MOLST

To help the medical team recognize when children and families are appropriate for a thoughtful goals for care and MOLST discussion, the MOLST for Minor Patients Workgroup developed additional resources for professionals, including Guidelines for Minor Patients Appropriate for MOLST Discussions, MOLST for Minor Patients FAQs and MOLST for Minor Patients with Developmental Disabilities FAQs. Physicians, nurse practitioners, and physician assistants should consider MOLST when the pediatric patient:

• Might die within the next year
• Is highly likely to experience clinical decompensation and discussions regarding life-sustaining treatment are appropriate
• Has medical decision-making capacity and wants to avoid or receive life-sustaining treatment
• Lacks decision-making capacity and the child’s parent/guardian is choosing to withhold/withdraw life-sustaining treatment because of the child’s known poor prognosis

The MOLST discussions for these patients may be reflected in orders that pursue all life-sustaining treatments, no life-sustaining treatments, or limited life-sustaining treatments. Specific clinical examples of children and families appropriate for a MOLST discussion include:

1. Life-threatening conditions for which curative treatment may be feasible but can fail. A goals for care discussion may be particularly important during phases of prognostic uncertainty and where treatment fails.
   • Children who experience severe head injury as a result of acute trauma in a motor vehicle accident. Thoughtful MOLST discussions are appropriate.
   • Children who have relapsed Acute lymphocytic Leukemia (ALL) within a year of diagnosis generally have a poor prognosis, yet cure is possible. Thoughtful goals for care and MOLST discussions are appropriate. In contrast a child with newly diagnosed ALL has an excellent prognosis and a MOLST discussion is not appropriate at the time of initial diagnosis.
2. Conditions in which there may be long phases of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities, but premature death is anticipated.
   • Young children with Cystic Fibrosis (CF), Duchenne’s muscular dystrophy, or well-controlled HIV are not appropriate to have a MOLST discussion, as death may not happen for years. However, if health status and quality of life declines secondary to serious complications or disease progression (i.e. patient with CF is listed for a lung transplant) then thoughtful goals for care and MOLST discussions are appropriate.
3. Progressive conditions without curative treatment options, in which treatment is exclusively palliative and may commonly extend over many years.
   • A child with Spinal Muscular Atrophy Type I typically experiences steady decline with a life expectancy of only a few years. Thoughtful MOLST discussions are appropriate earlier in the course of the disease.
4. Conditions with severe neurological disability which may cause weakness and susceptibility to health complications, and may deteriorate unpredictably, but are not considered progressive.
   • Children with severe anoxic encephalopathy often have profound patient care needs, including poor airway control. Thoughtful goals for care and MOLST discussions are appropriate.
   • Not every child with cerebral palsy is appropriate for a MOLST discussion. However, complications such as scoliosis, severe restrictive lung disease, recurrent aspiration pneumonias, and feeding intolerance do put the child at risk for frequent hospitalizations as well as ventilator support. With progressive complications the condition ultimately can become life threatening. As these children grow and develop such conditions, MOLST discussions are appropriate.
   • For a child who has phenylketonuria and is on an appropriate diet, thoughtful MOLST discussions are not appropriate.

Consent

The child’s parent or guardian is the surrogate decision maker and it is their consent that is required to withhold/withdraw life-sustaining treatment. The Checklist for Minor Patients covers the necessary steps in circumstances where one or both parents may not be engaged with the decisions.

In situations where the patient has the ability to understand the conversation and the decisions being made then the law suggests that the minor patient be part of the discussion and their consent to withhold/withdraw life-sustaining treatment is also required in these circumstances.

Circumstances Where Minors are Treated as Adults

There are three circumstances in New York where the minor patient is emancipated and is treated as an adult. In these situations the correct adult checklist should be used:

• If the minor patient is married
• If the minor patient has a child or children of their own
• If the minor patient is 16 or older and living independently

Special considerations apply to decisions made about life-sustaining treatments in emancipated minors. Consult with legal counsel concerning MOLST orders for emancipated minors.

Recommending Health Care Proxies

As young adults approach their 18^th birthday and have the ability to choose a health care agent it is appropriate to recommend that they have a conversation with their family, choose a health care agent, and complete a health care proxy when they turn 18. This should be the recommendation for all people turning 18, but it is particularly important for young adults who have serious health conditions. Different laws regarding withholding/withdrawing life-sustaining treatment do apply once a person turns 18.