Charlie Matthew William Gard died this summer, a week shy of his first birthday. Born in England with a fatal genetic disorder, his parents had sued the National Health Service (NHS) to compel an experimental treatment. The NHS argued that treatment was futile and life support cruel. After his condition deteriorated, Charlie’s parents yielded, and life support was withdrawn.
Similar dramas play out in our own Texas Medical Center. Doctors and family disagree about treatment, and a life hangs in the balance. Texas offers extensive procedures to protect both physicians and patients when conflicts arise. Chapter 166 of the Texas Health and Safety Code addresses advance directives, including medical powers of attorney, out-of-hospital DNR orders, and directives to physician.
Section 166.046 requires review by an ethics or medical committee whenever a physician refuses to honor a patient or family’s treatment request, whether expressed in an advance directive (“withhold life support” or “do not withhold life support”) or a contemporaneous decision (“heroin, please”). Life support is provided pending review and at least 10 days following the committee’s report. Extensions are made when a court finds a reasonable chance a different doctor or facility would honor the request. The process would be familiar to Charlie Gard’s parents: conflict, internal review, judicial oversight.
Texas also tries to educate patients and family before conflict arises, and to help frustrated patients transfer to a more cooperative setting.
Section 166.004 requires health care providers, including hospitals, skilled nursing facilities, and assisted living facilities (but excluding emergency rooms), to develop written policies regarding advance directives and to share them upon treatment or admission. Every Texan, every time, is entitled to “a clear and precise statement of any procedure the health care provider is unwilling or unable to provide or withhold in accordance with an advance directive.”
When a conflict regarding life sustaining treatment arises, part of the review process is a notice explaining the patient’s rights. Featured prominently is an explanation that, even if the committee decides the treatment request is inappropriate, the physician and facility must assist in finding other, willing providers.
In addition, the notice includes a list of providers and referral groups that have volunteered to accept or help transfers. Texas maintains a registry of those volunteers. As of September 2017, the only groups registered support continued life sustaining treatment. None support patients who request withholding or withdrawal of treatment.