Remembering Jahi McMath, the person who died twice

I have been meditating lately about death as I continue to see it on a regular basis. What continues to amaze me is the fact that, under the most obvious circumstances, patients and families seem to be skeptical about it and it is never a natural occurrence; and we are never ever ready for it.

I was thinking about Jahi McMath who “died again” just about a year ago. She was the most remarkable case in our lifetime in terms of creating controversy about what death really means, after she had been pronounced brain dead, which is legal death. All of this mediated by the family resisting death itself. 

Many TV stations covered her saga. They showed different viewpoints ranging from the most rational, scientific and legal views, to the most extreme ones. The family expressed that based on profound religious beliefs, they would not even think about death.

People have real issues with the end-of-life concept. Especially in this country, patients going to the hospital expect to live. In other countries, when people go to the hospital, they expect to die.

Jahi’s case was an extreme situation because she went in for an elective surgery with a mortality of one in 30,000, and unfortunately she was the one. Four days later, at the very young age of 13, she was pronounced brain dead. Apparently, she bled from her complicated throat surgery, leading to a cardiac arrest and severe lack of oxygen to the brain, causing damage beyond repair.

Multiple experts opined; including in hospital, outside consultants, and some of them appointed by the court. The family continued to hold the idea that she was alive. When her mother was asked what it would take to convince her that she was dead, the answer was: “only if her heart stops.”

This case brought up a lot of controversy about brain death in the legal and medical worlds, in spite of the fact it can be diagnosed with a very high degree of certainty. I was also amazed by the popular support shown by emotional people, by the media and by some laymen that chose to express their belief that she was alive, certainly without any scientific basis to prove their case. 

As I kept on screening through renowned cases where people with “brain death” came back to life, I realized that these cases were not actually brain death stories.

The general idea that, once the brain dies, the body falls apart physiologically and deteriorates within days to weeks was not, in retrospect, Jahi’s case. She actually was artificially well preserved and apparently “reached puberty” pushing the known medical boundaries by lasting so long. 

One of the things we say in our documentary is “everybody wants to live for as long as they can and nobody wants to die.” It is unfortunate, to say the least, that this prayer has no scientific basis and that we must eventually die. We all do, without any exceptions.

I believe the point to be made behind this discussion is the fact that death is a reality, death is natural and death is certain 100 percent of the time.

We live in an era in which science has reached the point where we can keep bodies alive. This is the most incredible experiment in human history in terms of living through what legally and medically was deemed to be death in the first place. This is the only human being that I am aware of with two death certificates, one four days after the initial brain death and the second one after her heart gave up.

In my book “At Death’s Door” we tell reality based stories and experiences showing how people are impacted by death. I never saw anything like Jahi’s case. Some people however are willing to trade quality of life for quantity, which is, in our society, a very unfortunate exchange. I see people putting themselves and their loves ones through unbelievable physical and emotional suffering and pain in order to see another day.

Think about quality of life; think about what people really want for themselves. Not just what we want for them. It is easy to act by proxy on those who cannot express their wishes like Jahi. I do not know of any patient who would want to live that way. That is not living; it’s dying. We are probably at risk of having similar situations in the future as our scientific resources allow.

Families are, many times, the driving forces behind a protracted death and the consequent addition of pain and suffering. Unfortunately, doctors today are nowhere to be found when it comes to showing the way and guiding. Doctors have become unfamiliar with the concept of death and more familiar with the concept of pain and suffering and fighting for “extra time.”

I believe that life is beautiful. There is nothing like a life well-lived; a life with a purpose, goals and achievements. In a life with deadlines, death itself is the biggest deadline of all.

Just from a human point of view, nothing has changed. We still are born, grow, reproduce and then we die. As far as we know in 2019, there is nothing we can do about it. We should look at death as part of reality, and have respect for the process of death, which is the only truth we know; everything else pales in comparison. Make the best of life but don’t forget that it will come to a close, hopefully with dignity.

Sebastian Sepulveda M.D. specializes in internal and hospital medicine — focusing on end-of-life care. He works in private practice affiliated with Lowell General Hospital.