Posted on January 10, 2014 at 9:55 AM
by Craig Klugman, Ph.D
If you were from a foreign nation looking at the United States news right now, you would think that this was a nation that had declared war on death. Or perhaps we could state it better as a total denial of death. In California, Jahi McMath, a teenage girl who has been medically and legally dead for nearly a month (death certificate was issued December 12) has been moved to an unnamed facility and given surgical procedures to introduce air, water, and food more easily while her body continues to degrade and decay. And in Texas, Marlise Munoz, a woman who may be brain dead or may be in a persistent vegetative state (the hospital isn’t saying and the experts are split), is being maintained because of the hospital’s interpretation of a state law, so that she can be used as an incubator to keep her 14-week old fetus growing despite the wishes of her parents and husband that she be disconnected from the ventilator and supportive measures.
In California, a mother is being criticized for exercising her autonomy beyond reason to define death on her own terms. While in Texas a family’s autonomy to make surrogate health care decisions is being denied. Both of these women have become objects and tools of various groups. In California, the girl is an object of unrealistic hope and political factions. In Texas, a woman is being made into an object and tool to gestate a fetus that may never be born and may not be viable after being deprived of oxygen. Not only has the family expressed their wishes but Marlise also had deliberate and specific conversations with her family about not wanting to be maintained by machines. And lest we forget, the human incubator is also being used as a tool of politics, for elected officials trying to further their career and standing with certain political/religious/social factions to further their agendas.
Ethicists, politicians, physicians, attorneys, and many others have taken strong stands and shared their opinions on these cases. There are questions about family decision-making autonomy, surrogate decision-making, the limits of the law, protection of the unborn, respect for personal beliefs, financing the maintenance of the bodies, state interest in unborn life, the poor state of science education in the U.S., the lack of public education on death, and whether this is some odd confluence of events or precedent-setting.
Some writers blame Jahi’s mom for refusing to admit to her daughter’s death. Other thinkers blame a right-leaning state government. Some people blame a hospital that refused to acquiesces to a mourning mother’s wishes. And still others blame a family that will not give a fetus every chance at being born. However, I take a different approach as to who or what is at fault. I blame the ventilator (“vent”). If ventilators did not exist, then Jahi’s heart would have stopped a month ago and her mother would have been forced to deal with her death. Without a ventilator, there would be no way to use Marlise as an incubator. As technologies are created there is often debate about how we should use it. But history has shown that new technologies are usually adopted and used in ways no one could conceive. I suggest it’s time we rethink the vent.
Ventilation machines existed as far back as the 1800s as negative pressure devices. In 1928, the Drinker respirator was introduced and more refinements came in 1931. These early machines were widely used for polio patients. In 1949, J. H. Emerson designed a vent to be used in anesthesia and in intensive care, predominantly in polio patients and patients undergoing surgery. Then in 1971 a more powerful, smaller, and more effective ventilator was introduced. This allowed the vent to be used on a wider variety of patients and for a longer period of time.
The ventilator is sometimes a method to keep a body alive to preserve organs for transplant. Since the 1970s it has been used to keep alive those individuals who lack consciousness—individuals in a coma or persistent vegetative state. And in 2014, apparently ventilators are used to keep the dead functioning as incubators or as vessels of misguided hope. Thus from their early use as a tool to keep people with functioning brains alive, the vent is now used to perfuse air into a dead body.
My suggestion is that we limit the use of vents since that seems to be the problem. Vents should only be used for those individuals who can consent to have one used on them. If you have consented to be an organ donor at some time in the future, then you can give advance consent for a vent. If you have a disease that destroys your ability to breath (polio, ALS), you can consent to one. But if you suddenly start bleeding and have a heart attack where your brain is deprived of oxygen for so long that it dies, well you can’t consent for a vent. In every other aspect of medicine, we require consent of the patient or surrogate before even touching the person (with exceptions for emergencies). Why is the reverse the case for the ventilator? Vent now, ask questions later. For example, if a person’s kidneys are failing, we do not wait for him or her to become unconscious and then reflexively put them onto dialysis, requiring consent to remove the treatment or look for documentation that the person wound want this support removed. In most cases, a person (or his/her surrogate) has to consent for dialysis before it is initiated. This is an imperfect comparison because if a patient needs dialysis, waiting ten or 30 minutes to begin treatment would not be fatal in most cases (poisoning would be one exception), whereas waiting that amount of time to ventilate someone who is not breathing would be fatal.
With the status quo, if you do not want a vent, then you need an advance directive, POLST, or DNI form. Even if you have such a form it may be hard to locate and no one may follow it. , Why should we accept that we need to consent to not being treated when in most other areas of medicine the reverse would be true. We need to adopt a notion of presumed refusal when it comes to ventilators. If you want a vent, then you need to provide advance consent that this is what you would have desired. Rather than being a first reaction, the vent should only be used when medically appropriate and requested by a patient (or patient’s legal surrogate or patient’s advance directive).
There is likely to be resistance to such a change as the ventilator is a long accepted part of medicine and has even been popularized in the media: No medical drama would be complete without a ventilated patient. And this idea might not have prevented Jahi’s mother from consenting for her child’s dead body to be kept warm with a vent. But moving in this direction would change our expectations that miracle breathing machines, machines that bring people “back from death,” are not the norm and should therefore should not be expected.
I blame the frequent, automatic use of the ventilator for many of these current issues and unrealistic expectations. If we change the laws, the standard of care, or even how these issues are dealt with on TV and the movies, then maybe the tragedies that these two cases represent can be avoided.