Deacon Alan Rastrelli is a licensed physician with expertise in anesthesiology and palliative medicine with the Denver-based Divine Mercy Supportive Care center, where he also serves as a spiritual advisor to the staff. He said another common problem when diagnosing a patient who has suffered brain trauma is a confusion of terms and a tendency to jump to the worst assumption.
“What I've been concerned about for some time, as I've been dealing with palliative care and bioethics and hospice care as a physician, is that sometimes the jump in the ICU is to go right to, ‘Oh this is a vegetative state, they’ll never come out of it.’ Or to say they’re brain dead or are in a comatose state when they haven’t done the right studies,” he said.
“The terminology has been so confused over the last 10-15 years, that sometimes families are not sure what kind of decisions to make when they’re faced with a neurological insult,” Dr. Rastrelli added.
The term brain-dead, for example, only came into common use when organ donation became possible. A patient has minimal brain stem function if any, and their heartbeat and breathing are able to be sustained only through machines. Over the years, it has become a clearer diagnosis, allowing for safer organ donation, Dr. Rastrelli said, although sometimes there are still misdiagnoses.
New technologies, including brain scans that can detect brain activity in persons who may be outwardly unresponsive, may help doctors better understand and diagnose the level of consciousness of their patients.
“It is making people pause a little bit more to say, well we think there’s nothing there, but wow, some areas of the brain light up when we talk about mom or dad or children, or something that they might remember,” he said.
“With these new studies, maybe we won’t have to guess whether they feel or not, or hear or not, or suffer or not, we might be able to see if there’s still some activity there, and to show the opposite too, if there really isn’t.”
Another issue with over-diagnosis of the permanent vegetative state is a tendency to underestimate a patient’s ability to recover and become aware, which can occur years after the initial incident causing unconsciousness.
Research suggests that 68 percent of severely brain-injured patients who receive rehabilitation eventually regain consciousness, and that 21 percent of those are able to eventually live on their own. Yet unconscious patients are often too quickly dismissed as vegetative, disqualifying them from insurance on further rehabilitation efforts.
“Patients like Maggie are routinely misdiagnosed and placed in what we euphemistically call ‘custodial care’ where they have no access to any treatments that might help them recover or give them a chance of engaging with others,” Dr. Joseph Fins, chief of the division of medical ethics at Weill, told Newsweek.
There are times when additional measures, such as a ventilator or a feeding tube, would be considered extraordinary means of prolonging life and would not be ethically required by the Catholic Church, but each case is complex and unique, Dr. Rastrelli said.
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Typically, families are not required to keep their loved ones on ventilators if the person will never again breathe on their own. In the case of a feeding tube, a dying person’s body may reject the nutrients, putting the person at risk for infection or aspiration, but feeding tubes should typically not be withheld or removed unless there are proven adverse effects, Dr. Rastrelli added.
“That person is still a person and we need to see if we can comfortably provide them with at least nutrition and hydration, not to the extreme of breathing machines and dialysis machines, if it’s not going to help, but as a comfort measure almost to allow them to have the nutrition that their body would normally be asking for,” he said.
Dr. Rastrelli said he is also concerned about the over-diagnosis of the vegetative state in an age of increased pushes for legalized assisted suicide in that it could lead to cases of euthanasia, which differs from assisted suicide in that other people make end-of-life decisions for the dying person, including withholding food and water.
“If you would talk to people in Compassion and Choices (the company behind the publicized case of Brittany Maynard), they would say that we don’t need any more disabled, society-dependent people to use up our resources if we’re not going to get them into a more functional, independent state,” he said.
“They would say well they’re just going to be suffering and you’re just wanting to keep them alive, just because of your religious beliefs. So why not just let them die or why not just help them die? They’re going to die anyway so why not just do it now and end their suffering. It sounds very good in sound bites, but it’s very dangerous because other people are making those decisions and presumptions.”
Catholics also have a different understanding of the human person, Furton said, in that they believe people are a union of body and soul, which is different than the prevailing beliefs in the current medical community, and could contribute to the tendency to over-diagnose patients as vegetative.