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 whenmedically 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.
Craig Klugman, PhD is a bioethicist and medical anthropologist who will be professor and chair of the Department of Health Sciences at Depaul University. He is also an author of bioethics.net, where this post originally appeared.
Corner, Chelsea. Conceded by Martín Demichelis.
This is a great piece exposing how technology will virtually keep us not forgetting the past. I personally feel that this is one of the ethical dilemmas that technology present to the world today. Again, the piece present a case where lack of respect of “patient autonomy” is the order of the day thus even more concern in the health sector…
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Thanks for the interest and conversation in this piece. Just to reiterate, there is nothing simple about this case and it is not not a “teachable case” because from a bioethics perspective, there is nothing all that interesting here other than a family’s grief and inability to say goodbye.
A number of your comments are about the cost of care for Jahi. As you have probably realized, insurance does not pay for care for a person who has been declared legally dead and issued a death certificate. The family has been raising money online to pay the costs, having raised over $58,000 as of January 13.
A lot of pieces of this story are not public such as the differential diagnosis of what caused the bleeding and heart attack and we may never know.
Living in a democracy does not mean that everyone gets what they want. In fact, we do not live in a democracy but in a representative republic. That means that we do not make the laws ourselves, but elect representatives who do that job for us. This system is set up to protect the minority from the tyranny of the majority. But this case is not about a mother making her own choices about her daughter, this case is about a mother denying factual reality. Why is Jahi’s body not doing well–because a deceased body begins to breakdown.
My point was to start a conversation, which I think we have begun, over the assumption that we should always try to save a live no matter what. We may decide that is what we should do, but I believe that every few years we need to have that conversation. The point made in a comment above that my suggestion of “not using ventilators as a way to manage what is an ethical issue” does not show the exact opposite, that using the ventilator is also an ethical issue but we tend to forget about that.
I stand corrected about insurance paying for Jahi’s care.
Nevertheless I think the point is a valid one. The cost of care in the ICU or on a respirator is huge. And there are many people who end up there who arguably should not. Families who want to “spare no expense” are frequently not talking about their expense but others.
“The family has been raising money online to pay the costs, having raised over $58,000 as of January 13.”
Two words: opportunity cost.
John Irvine has it exactly backwards
The same factors keeping a brain dead teenage girl on a ventilator are also keeping a 90 yo with terminal illness in the ICU, etc. etc. etc. I have seen it many, many times before.
And this girl is not being kept on a vent at the insistence of various profit hungry and unscrupulous people, but at the insistence of her family.
And I guarantee you that if the family had to pay the huge costs of keeping her body alive after her brain has died she would be extubated tomorrow.
“I guarantee you that if the family had to pay the huge costs of keeping her body alive after her brain has died she would be extubated tomorrow.”
Ding, ding, ding, we have a winner.
Any ENT surgeon – as I am – got a chill when they read the Jahi McMath story. A post-tonsillectomy bleed is not common, but it is not uncommon either. What was significant, though, is the timing. A bleed 7-10dys out is typically from the scab falling off in the healing process and may need to go back to the OR. But bleeding within the first few hours after the procedure is almost always a technical issue and usually needs to go back to the OR.
I know that every surgeon asked whether the doctor was contacted or if the recovery room staff just thought this was no big deal. If the doctor was contacted and didn’t come in, I feel bad for how this is going to go (I feel bad for the patient and family regardless). If the doctor wasn’t informed, they still won’t escape the fallout, but at least they can know that a technical error happened but they didn’t compound it with lack of attention.
But the whole issue of not using ventilators as a way to manage what is an ethical issue is like anyone who blames technology for the ills of society. There are plenty of examples of bad outcomes from technology, but there are many good outcomes as well. The problem with legislating what should be good sense and humanity is that we lose the benefit of what technology can do.
It wasn’t just a tonsillectomy – there were three surgeries, they also removed her adenoids, uvula and some tissue in nose and throat – I am not an expert, but as an ENT you could probably name them
Additionally, based on what I read there are some questions about family’s possible disregard for post op instruction e.g. letting her talk and laugh (is it dangerous?), possibly eat, and also having family members do the suctioning. I am not sure about the food, but the grandmother mentioned other things in her interview. Could this be responsible for bleeding?
I get the emotion around Jahi’s story. However, my gut is that the policy community seized too quickly on this as a “teachable moment.”
Jahi’s mother has the right to make her own decisions, even if they are at odds with the conventional wisdom in the medical community. This is the price we pay for living in a democracy.
Using this girl as some sort of simplistic case study in why health care costs are too high is insane. The Jahi McMath’s are not the reason the cost of health care are out of control. The for profit health care system is. The specialists who perform unnecessary surgeries are. The drug companies that overcharge the market. The opportunistic long term care facilities and unscrupulous hospital chains that squeeze every last dollar out of the system are.
Shame on us for using this innocent child as some sort of example.