Sadly, I don’t think Israel Stinson will recover. I do believe that the Uniform Determination of Death criteria are correct and accurate, from a legal, moral, and ethical perspective. We don’t allow families to reject the diagnosis of death in irreversible cardiac arrest—that remains the purview of physicians (and first responders in defined circumstances). But religious objections to brain death continue to increase in cases of functionally decapitated people with ongoing somatic/ organ function.
I think we have to come to some kind of national consensus on this due to the vast and serious number of multidisciplinary issues involved. I understand that some people have religious objections to withdrawing care while machines are still providing organ support for their loved one.
I’m not opposed to transferring these patients out of an ICU acute care hospital setting into a long term care/ home care setting, provided that there are no no legal mandates (like forcing hospitals to provide tracheostomy and g-tube surgeries), releasing hospitals and licensed professionals from any medical malpractice or negligence claims after the diagnosis of brain death, and no public funds or health insurance funds are used to maintain the body of the brain dead person. At the very least, we have to stop the pretense that these patients will ever “recover”, and limit what interventions (such as CPR/ ACLS, ECMO, LVAD, etc) will be provided while they are still in an ICU.
Only then, when we stop the pretense of the potential for recovery, can we focus on truly caring for these families who are reluctant to let go of their loved one. I do believe in these instances, when we care for the body of the brain dead person, we are caring MORE for the family than the patient. But we, as a society, absolutely have to put limits on
what kind of care can and should be provided in acute care hospitals for brain dead patients, and for how long. This absolutely
cannot be dictated by families, IMO, for a plethora of very sound reasons.
The really sad thing is that these high profile cases, increasingly (IMO) are forcing the regulation of the care of the brain dead, and not in a good way. Clinicians and hospitals (IMO) are having less and less flexibility in these cases, as hospitals scramble to enact policies to protect themselves legally from families who reject brain death.
I’d like to see religious organizations step up and start home-like facilities to receive, fund, staff, and provide custodial care for individuals with brain death, so these families have a place to take their brain dead loved one. We could even allow unlicensed individuals to provide care in these facilities, increasing the potential population of caregivers, and statutorily exempt the facilities from traditional LTC oversight and inspections. Essentially, they would fall into a “home” category, instead of a “health care facility”. What a great opportunity for those who feel so passionately that this kind of ongoing care should be available—a great mission for many religious organizations, if they would just get together and organize. But I think it’s essential to make sure that this type of somatic support care for brain dead patients is funded voluntarily by charities, and not at all by insurance mandates, or using any public funds, or coercing care by acute care hospitals and mainstream medical professionals. That’s my wish list for these tragic cases!
These stories of brain dead children, with parents rejecting the diagnosis of death, do seem to be increasing in the U.S. Every one of the cases are heartbreaking, and soaked in grief. The issues in pediatrics are somewhat different than in adults or elderly adults. Basically, the issues in pediatrics break down into two categories: children born with syndromes or abnormalities incompatible with life, and children who become brain dead as a result of trauma or disease.
The main arguments of the families center around whether or not parents/ guardians have the (legal/ ethical/ moral) “right” to “consent or reject” a diagnosis of brain death, and preceding that, whether parents/ guardians have the “right” to consent to, or refuse, the tests conducted by physicians to establish the diagnosis of brain death (or as Attorney Ethicist Thaddeus Pope labels it—determination of death by neurologic criteria—DDNC.) In the case of newborns with complex congenital anomalies (such as the severe underdevelopment of lungs, or infants born missing brain tissue above the brain stem), the issues have to do with how aggressively any type of medical intervention is applied and maintained—medical futility. These cases are the foundation of the push for “Simon’s Law” in Missouri and Kansas. (Easily searched if you type it in a browser.)
From what I’ve read, there have been five cases in California in the recent months regarding brain death diagnosis rejected by families. Three are related to Jahi McMath, one is Israel Stinson, and one is Alan Sanchez, a teenager brain dead after a car accident, who passed away (irreversible cardiac arrest after brain death) a few days after court proceedings began.
http://medicalfutility.blogspot.com...:+MedicalFutilityBlog+(Medical+Futility+Blog)
Thaddeus Pope, JD/ PhD, is a professor and medical ethical scholar at Hamline University in St. Paul, MN, who studies “medical futility” in policy and law. He has a blog where he follows these cases, as well as updates on policy and legislation. He is in the process of writing a textbook chapter for Law, Religion, and Health in the U.S., due out later this year. He has made his draft chapter available free (you do have to download—11 pages, but it’s free, no registration required). It’s a good read, no matter which side of the arguments you support. If interested, one can subscribe to Thaddeus Pope’s Medical Futility Blog (easily searched)—he updates about once a week.
http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2699983&download=yes