By Anne O’Meara, Executive Director
Imagine this frightening scenario…
You are watching your grandchildren and find your 4-year old grandson lying face down in the backyard pool. You do CPR and he is rushed to the hospital. For the first couple of days, he breathes on his own. Then, he experiences brain swelling and is placed on a ventilator.
Hours after the brain swelling episode occurs, you witness a team of doctors advising your daughter and her husband that they need to think about the resources their child is using – implying resources are being wasted on their little boy. “Your child is most likely ‘brain dead’,” the doctors tell them. “If he lives, he will always be a burden to your family.” Finally, the doctors cut to the chase, saying, “We advise performing an apnea test to determine if he is ‘brain dead.’ If he is, you need to think about showing compassion for others, stopping life support, and donating his organs to help a child who desperately needs them.”
Your daughter and her husband vehemently refuse to consider stopping treatment or life support. They believe there is reason to hope, and God alone should decide when their child dies. After a challenging conversation, the doctors leave. A couple of hours later, a new doctor strides into the hospital room. He introduces himself as the doctor in charge of the unit and informs the family that he will be doing an assessment that afternoon which will be followed by a secondary assessment 12 hours later. He then matter-of-factly states, “If the child doesn’t pass the assessments, we will remove the ventilator.” This means your grandson will most likely die. As you listen to this arrogant doctor talk about the life and death of your grandson, you get the impression that he thinks he is God—that is, he will be the one to decide whether your grandson lives or dies.
As this doctor talks, it becomes apparent his mind is already made up to withdraw life support from your grandson. You ask, “How can you do this? Withdrawing life support is the family’s decision, not yours.” He responds, “These situations are always tough. One needs to weigh the benefits and burdens of treatment. It is the opinion of our Ethics Committee that it wouldn’t be in the child’s best interest to continue treatment or life support as he would have a low quality of life in the future.”
Did you know?
Many of the calls we receive on the HALO Helpline (1-888-221-4256) are strikingly similar to this scenario. While the doctor in the case above never mentions “futility policy,” that is what he is referring to. Futile Care Theory is the proposal that life-sustaining treatment can be withheld or withdrawn, against a patient’s or family’s wishes, based on arbitrary “quality of life” and/or “cost-benefit” judgments. In many cases, it is the patient’s life that is deemed futile (i.e., useless)—not the treatment. When a patient or family objects to stopping life-sustaining treatment, the final decision is usually made by a hospital-appointed ethics committee.
Patients and their families expect doctors and hospitals to protect and preserve lives, not to decide that some lives are unworthy of care. Nevertheless, hospital “medical futility” policies threaten the lives of unsuspecting patients every day. Such policies, often supported by state laws, result in inexpressible human suffering.
In many “futile care” situations, the patient is declared “brain dead.” The legal definition of brain death is “irreversible cessation of all functions of the entire brain, including the brain stem.”  Because there is a wide variation in “brain death” criteria used by leading neurological institutions, a person could be considered “brain dead” in one hospital and alive in another. One test that is always required in determining “brain death” is the apnea test mentioned above. It entails turning off the ventilator for up to 10 minutes to see if the patient can breathe independently. This test can cause additional brain damage and/or a heart attack. Testing for death should never be done at the risk of harming or killing a patient. The apnea test is often performed without consent.
My biggest surprise
In closing, my biggest surprise since coming to HALO has been realizing that the pro-death movement has its tentacles in every aspect of healthcare, including the denial of care based on degrading decisions about whose lives are “not worth living.”
So, what can YOU do to address the issue of healthcare providers denying patients life-sustaining treatment against their wishes? In the words of Dr. Howard Koh, formerly the assistant secretary for health at the US Department of Health and Human Services, “Advocacy is the engine for change, and the beauty of it is that it can begin with just one person.”  Be that person! Prepare yourself to be a life-affirming advocate for those near and dear to you when they need medical care. HALO can help you get ready to make a difference.
For more information, call 1-888-221-HALO or email firstname.lastname@example.org.
 Uniform Determination of Death Act /  Neurology. 2008;70;284-289. /  “’Brain Death’ is Not Death!” 2005  Robert Allen Bear, MD, “Involuntary Discharge from Dialysis: A Health Care Practice like No Other,” KevinMD.co