What Steve Jobs and Baby Joseph Maraachli Teach Us About a 'Good Death'

Everyone knows who Steve Jobs was. Maraachli was the toddler who died five months after his parents fought the Canadian medical system to give him a tracheotomy so he could leave the hospital and die at home.
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"Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose."
-- Steve Jobs in his 2005 Stanford University commencement address

It is with great sympathy that I read about the recent passings of Steve Jobs and Baby Joseph Maraachli. Everyone knows who Steve Jobs was -- an icon of our times. Maraachli was the toddler who died five months after his parents fought the Canadian medical system to give him a tracheotomy so he could leave the hospital and die at home. These two events are more similar than it may first appear, and they both say something important for us to remember. After all, the circumstances of Steve Jobs or Baby Joseph may someday be our own.

A good death is possible. Steve Jobs defined it for himself: Live until you die, make no excuses for your mortality and be surrounded by those you love at the end. He took his last breaths with his dignity intact. Baby Joseph's parents seemed to only want the same thing for their son, and probably the doctors did, too. They just couldn't agree on how that should happen. Ultimately, Baby Joseph took his last breaths in his parents' arms in a quiet home, not in a cold hospital surrounded by strangers, noise and harsh lights.

A good death is not always easy to have, and unless you're prepared, you may have to fight the system to get it. After procedures and treatments could no longer sustain him, Jobs accepted the inevitability of his terminal disease. He put his affairs in order, didn't ask for sympathy and passed on his own time. Baby Joseph's parents had to sue for the their child's right to do the same thing. I have sympathy for everyone involved in the legal fight surrounding how the child would die and on whose terms that would happen. When a third party makes end-of-life decisions, it's done according to his or her own value system. The problem is that we each have our own way of making sense of the world, so critics can argue for and against the decision maker. Whether that battle is fought in the press or the courtrooms, or by the hospital ethics board or family relationship system, it makes enemies out of advocates and vilifies good intentions.

The best thing that can happen at the end of life is that the dying person speaks for himself or herself. Jobs called all the shots about how he would die. He took responsibility for it and considered it a personal issue. Advance care directives that specify end-of-life care preferences help when we cannot speak for ourselves, so if you want to be responsible for your endings the way Steve Jobs was, you should have one. But Baby Joseph wasn't old enough to speak for himself, and the argument of who should speak for him persists.

When someone cannot be healed or stabilized, medicine and technology can be used to relieve fear, bring comfort and make a good death possible. People who have elected to be healers are trained to keep us alive; very few are trained to help us die. Palliative medicine, narrative medicine and hospice care are fields of practice that can help terminally-ill people explore options beyond heroic surgeries, experimental drugs and institutional death. Dying peacefully the way Steve and Baby Joseph did sometimes takes some work.

There is more to life than living and more to death than dying. It's important to do both well. When we can accept that death is a natural outcome, it's easier to accept that little babies sometimes die and that death seldom comes under the best of circumstances even for the rich and famous. Only when we can truly accept the process of death as a normal transition can every single day and every single life really matter.

Janice M. Van Dyck is an award-winning freelance writer and author of "Finding Frances," a novel about a family dealing with the ethics of end-of-life choices.

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