By Lisa Blumberg (pictured right).
Trisomy 18 is a genetic condition that usually results in physical health problems and cognitive limitations. Life expectancy is currently shorter than typical but people can live into their 20’s and 30’s and one American with trisomy 18, Megan Hayes, celebrated her fortieth birthday with fanfare. Unfortunately, it seems that this information has been slow to percolate down to medical professionals.
When Simon Crosier was born in 2010, he was given full care until he was diagnosed with trisomy 18 at three days old. His parents, Sheryl and Scott Crosier were then told, “your child is now incompatible with life.”
This phrasing is ambiguous. Did Simon have an irretrievably, quickly, fatal condition or was he “now incompatible with life” due to the mere fact of his diagnosis and hospital procedures regarding it? The hospital had a futility policy that the Crosiers assert they did not learn about until after the fact.
The Crosiers had to fight with medical staff who shut off his heart monitors and refused to give him breathing treatments. Rather than give Simon breast milk which Sheryl was pumping conscientiously, nurses used a syringe to put drops of non-nutritious sugar water in Simon’s mouth to quiet him when he got fussy. This was so-called comfort feeding designed to have Simon wither away from starvation. Sheryl had to beg to have him fed breast milk.
Let’s pause right here – it seems Simon was capable of some swallowing, and he was conscious. Unconscious people do not get fussy. If a baby was restricted to “comfort feeding” in any other setting, the responsible party could be charged with extreme abuse.
On that awful day when Simon’s oxygen levels plummeted, the Crosiers say the NICU staff did nothing. Simon died. He was three months old. The Crosiers obtained his medical records and found out about the hospital’s futility policy and that his doctor had placed a do-not-resuscitate order as well as an order for only “comfort feeding” in his file. The Crosiers maintain that none of this had been discussed with them. They had wanted everything done for their son.
Scott would later say of futility policies that “hospitals are making business decisions when the lives of our children are at stake” and he’s right.
This was a classic case of lethal denial of sustenance and medical treatment based on disability.
Since Simon’s death, Sheryl Crosier has spearheaded legislation to prohibit a do-not-resuscitate order from being placed in a minor child’s medical chart without a parent’s or guardian’s knowledge or consent. Versions of Simon’s Law have been enacted in twelve states and now H.R. 6344, the Simon Crosier Act, has been introduced into Congress. This bill requires hospitals and other health care providers, as a condition of Medicare and Medicaid participation, to have certain written policies and procedures in place that limit the implementation of do-not-resuscitate (DNR) orders for unemancipated minors.
The bill provides in pertinent part that “Either parent . . . may refuse consent for a do-not-resuscitate order or similar physician’s order . . . The provider shall not have the authority to require the withholding or withdrawal of life-sustaining procedures from an unemancipated minor over the objection of the parent or legal guardian, unless . . . the minor has died. There shall be a presumption that the continuation of life is in the minor’s best interest.”
The bill would also require a hospital to provide its policies regarding withdrawal of life sustaining treatment, including any futility policy it may have, to a parent or legal guardian upon request.
In politics, it unfortunately matters how an initiative is framed. H.R. 6344 has been depicted as a parental rights initiative. Without taking anything away from parent advocates, the bill should be seen first and foremost to concern disability justice and health care equity issues.
As noted in an earlier blog, in our public comment on the update to the 504 regulations by the Department of Health and Human Services, we included a case documented in the National Council on Disability’s report on medical futility and disability where doctors gave parents of an infant with trisomy 18 misleading information about the child’s survivability. They did this to induce the parents to consent to the withholding of treatment. The Department affirmed that this type of scenario would amount to unlawful discrimination under Section 84.56. They also indicated that a treatment could only be deemed futile if it was clear that it could not achieve its physiologic effect without regard to the person’s disability. Of course, adults as well as kids have often been subjected to discriminatory futility policies.
By focusing on the unilateral imposition of do-not-resuscitate orders, H.R. 6344 or a similar bill would be a welcomed tool in our struggle for equal access to health care. Disability groups must be heavily involved in its final drafting and in presenting it as a bi-partisan measure.
