The Critical Gap in Medical Authority for Young Adults

Shawnee Baker, a former nurse from New Hampshire, faced a devastating legal battle after her 19-year-old daughter, Baylie Grogan, suffered catastrophic brain injuries in 2018. Despite being next of kin, Baker and her husband had no legal authority to make medical decisions because Baylie was an adult without a healthcare proxy.

Baylie had previously expressed a wish not to live in a body that didn't work. However, without legal documentation, she was kept on life support and repeatedly resuscitated. The ethics committees of two hospitals ultimately decided her fate. Baker now leads Baylie's Wish Foundation, advocating for colleges to include advance directives in orientation packets to prevent other families from facing similar powerlessness.

In 2017, Shawnee Baker promised her 18-year-old daughter, Baylie Grogan, that she would never let her live in a body that didn't work. Baylie, a pre-med student, was preparing to leave for the University of Miami. She was academically gifted, empathetic, and planned to become a doctor.

The following year, on August 19, 2018, Baylie was struck by a car in Miami after becoming separated from friends. She sustained catastrophic brain injuries and was given a 1% chance of survival. Baker described her daughter's condition as the worst she had ever seen, with significant swelling and signs of irreversible brain damage.

Baylie was later transferred to a hospital in Boston closer to her family. The neurological team detected a Duret hemorrhage in her brain, a bleed that signals full incapacitation. Baker knew that if Baylie survived, she would be in a persistent vegetative state, the very scenario she had promised to prevent.

Because Baylie Grogan was 19 years old, she was a legal adult. Despite being her next of kin, Shawnee Baker and her husband, Scott, were legally powerless. They were not allowed to see her medical records or make important decisions about her care.

The family faced several hurdles:

• They did not have the legal right to request a toxicology report.
• Baylie had never completed an advance directive, healthcare proxy, or HIPAA waiver.
• Obtaining guardianship through the courts would have taken months.

Without a healthcare proxy or Do Not Resuscitate (DNR) order, Baylie was repeatedly resuscitated by default. Baker later expressed regret over these measures, stating that Baylie's suffering was prolonged. The ethics committees of two hospitals were appointed to make decisions on Baylie's behalf.

The ethics committees ultimately held the power to decide Baylie Grogan's fate. A functional MRI was performed, and the committee interviewed 10 people who knew Baylie well. They asked if she would want to suffer under the conditions of a persistent vegetative state.

Everyone interviewed said no. After further deliberation, the family was informed on September 24, 2018, that Baylie could be moved to palliative care. She died with dignity and without suffering on September 27, 2018.

Baker kept her promise, but the experience left her feeling powerless. She realized that strangers, not her family, had judged whether her daughter's quality of life justified being taken off life support.

In the years following Baylie's death, Shawnee Baker founded Baylie's Wish Foundation. The foundation advises students to complete documents such as healthcare proxies and HIPAA waivers so their loved ones can respect their wishes in a medical crisis.

The foundation provides free downloadable forms for each state. Baker's primary goal is to change the system so that colleges automatically include these documents in the paperwork sent to incoming students. She believes this is a critical step in preventing other families from enduring the same legal and emotional battles.

Baker is determined to honor Baylie's memory by continuing her daughter's desire to help people. She is confident that Baylie would be proud of the campaign to protect the autonomy and dignity of young adults.