Richard Doerflinger writes on the American Academy of Neurology’s recently released guidelines on care for patients like Terri Schiavo:
Court cases involving patients like Nancy Cruzan, Nancy Ellen Jobes and Terri Schiavo have established a broad right to discontinue feeding and let patients in a vegetative state die of dehydration.
Now enters the American Academy of Neurology with new guidelines on treatment of these patients, developed along with other experts and the National Institute on Disability, Independent Living and Rehabilitation Research. This group’s findings and recommendations are game-changing:
- A more descriptive term for “vegetative state” is “unresponsive wakefulness syndrome.” (This will be welcomed by families who don’t appreciate their ailing loved ones being compared to broccoli.)
- There is a significant chance for rehabilitation (sometimes allowing patients to return home and resume employment) even in patients who have been in this state for a year or more, so “continued use of the term ‘permanent vegetative state’ is not justified.” The term “chronic” should be used, as it does not imply irreversibility. Protocols are recommended for enhancing the prospects for recovery.
- Studies show that the likelihood of misdiagnosing the condition is about 40 percent. This includes cases where patients diagnosed as “vegetative” actually had locked-in syndrome, where they cannot respond but are fully aware (so presumably they can hear their doctors calling them vegetables).
- One study found that 32 percent of patients with severe traumatic brain injury died in the hospital — but 70 percent of the deaths were due to withdrawal of life support, and such withdrawal had more to do with the facility where care was provided than with the severity of the symptoms.
In short, our medical system has been giving up on far too many of these patients, prematurely ensuring their deaths based on faulty diagnoses and self-fulfilling hopeless predictions.
Bobby Schindler and I wrote earlier this year on the increasing shift from describing brain injured persons as “vegetative” to instead experiencing “unresponsive wakefulness:”
What was essential in their recoveries from the standpoint of their families and caretakers was, first, a willingness to acknowledge a certain powerlessness — We cannot always make our loved ones better by our own power — and, second, a willingness to embrace uncertainty about their ultimate fate — Are they still really ‘with us’? Will they ever fully recover?— yet an even stronger willingness to live hopefully and with the sort of care that could provide an environment for life and for recovery.
Every person intuitively knows in his or her heart that what makes the special people in our lives so special is not what they do for us, but instead who they are. Every person who matters to us is a gift, always unearned, and often unexpected, whose particular value is incalculable and priceless.
Yet our medical culture is designed increasingly to also be an accounting culture, which necessarily introduces some temptation to view those for whom it was originally created to care unconditionally not as gifts, but as products.
In aggregate, this results in treating patients as a sort of raw human material whose potential future worth, just like a rising or falling stock, dictates their present value.
For example, unresponsively wakeful persons are not “attractive investments” in a profit-driven medical and accounting culture, and this means that families facing such a diagnosis will have to be particularly brave in providing the sort of safe havens and environments for potential recovery from which Terri Wallis, Martin Pistorius and Patricia White Bull each benefited in their own way.
For a society wishing to be humane, no “unresponsively wakeful” patient who is not dying can be allowed to fall victim to an imposed death of starvation and dehydration by removal of so-called “artificial” food and water. It is neither a natural nor a simple way to die.
Encouraging to see the American Academy of Neurology rejecting the sort of medicine-governed-by-accountants culture and But what can they do in this condition? thinking that has led to the deaths of Terri Schiavo and countless others.