Monday, April 9, 2018

"What Does It Mean to Die?"


That's the question asked by the New Yorker in a sad, poignant article.  Here's an excerpt.

Two days later, Jahi was declared brain-dead. With the help of a ventilator, she was breathing, but her pupils did not react to light, she did not have a gag reflex, and her eyes remained still when ice water was dripped in each ear. She was briefly disconnected from the ventilator, as a test, but her lungs filled with carbon dioxide. On an EEG test, no brain-wave activity could be seen.

Like all states, California follows a version of the 1981 Uniform Determination of Death Act, which says that someone who has sustained the “irreversible cessation of all functions of the entire brain, including the brain stem, is dead.” California law requires that hospitals permit “a reasonably brief period of accommodation” before disconnecting a ventilator—long enough to allow family to gather, but not so long that hospitals neglect the “needs of other patients and prospective patients in urgent need of care.”

. . .

Over the next few days, a social worker repeatedly urged Jahi’s family to make a plan for taking her off the ventilator. She also recommended that they consider donating her organs. “We were, like, ‘Nah,’ ” Marvin said. “ ‘First, tell us what happened to her.’ ” The family asked for Jahi’s medical records, but they weren’t allowed to see them while she was still in the hospital. Nailah didn’t understand how Jahi could be dead when her skin was still warm and soft and she occasionally moved her arms, ankles, and hips. The doctors said that the movement was only a spinal reflex, described in the medical literature as “a Lazarus sign.”

. . .

A week after the surgery, Sealey called a personal-injury lawyer, Christopher Dolan, and told him, “They’re going to kill my niece.” Dolan agreed to take on the case pro bono, though he had no experience with legal issues involving the end of life ... He wrote a cease-and-desist order: if doctors unplugged Jahi’s ventilator, he said, they would violate her and her family’s civil rights. Sealey taped the note to Jahi’s bed and oxygen monitor.

In a petition to the Alameda County Superior Court, Dolan requested that a physician unaffiliated with the hospital examine Jahi. He wrote that the hospital had a conflict of interest, because if its doctors were found guilty of malpractice they could “drastically reduce their liability by terminating Jahi’s life.” In cases of wrongful death, California places a cap of two hundred and fifty thousand dollars on damages for pain and suffering. But there is no limit on the amount that can be recovered when a patient is still alive.

. . .

On December 19th, ten days after the surgery, David Durand, the hospital’s senior vice-president and chief medical officer, held a meeting with the family ... When they persisted, Durand asked, “What is it that you don’t understand?” According to Jahi’s mother, stepfather, grandmother, brother, and Dolan, who took notes, Durand pounded his fist on the table, saying, “She’s dead, dead, dead.” (Durand denies pounding his fist or repeating the word.)

There's more at the link.  Highly recommended reading.

As a pastor and chaplain, I've seen enough of this sort of dilemma to understand both sides of the picture.  Families naturally want to keep hope - and the patient - alive as long as possible.  Hospitals want to avoid needless expense, and free up a bed (and, perhaps, specialized life support technology) for patients who desperately need it.  On the other hand, I've been present at meetings where hospital and medical staff undoubtedly pressured families to sign off on the termination of life support, particularly in cases where organ donation was an option.  I got the very strong impression that they were more interested in harvesting the patient's organs than in keeping him/her alive.  I'm not alone in that, either;  other chaplains and pastors with whom I've spoken have told me of hospitals asking them to persuade the family to "let go" and allow the patient to die, so that others may be helped.  They've even gone so far as to invoke Christian charity as a reason for doing so.

This also raised the question of so-called "living wills" or "advance healthcare directives".  In them, one specifies whether one does, or does not, wish to be resuscitated, or provided with life-enhancing or -extending treatment, under various circumstances.  These are supposed to be binding, but I've seen hospitals disregard them almost at will if it suits them to do so.  I've also seen relatives refuse to allow them to be implemented, often due to arguments over inheritances, over which they wish to reach agreement with other relatives before they allow the sick person to die.  It's a messy, mercenary business, and I hate it . . . but it's a reality most of us may one day face.

This is a terribly complex, thorny issue, and there are no easy answers.  There probably never will be.  However, it behooves all of us to be aware of it . . . because one day, we might well be the patient in that hospital bed, and our families may be arguing with the hospital over whether we should live or die.  That's not a comforting thought.

Peter

10 comments:

Chas Clifton said...

"[Living wills, etc.] are supposed to be binding, but I've seen hospitals disregard them almost at will if it suits them to do so."

Too true. I have been there. Hospitals and nursing home disregard living wills, "do not resuscitate" directives, etc., as it suits them. The only thing that works when you are across the table from the doctors, the "ethicist," and the rest is a medical power of attorney.

Aesop said...

I read the entire article.
Entirely apart form anything to do with organ donation, the family are delusional corpse-torturers, mostly out of the best intentions, but a dearth of any standards of reason.

If she's alive, take her off the ventilator and prove it.

If not, admit it, and move on.

Or, pay for the bill out of your own pocket, because medical care is a zero-sum problem: every public Medicare dollar she gets is a dollar not going to care for people who are demonstrably alive.

This is merely molly-coddling the people least likely to face reality.

The care leading to her situation was sub-standard, reprehensible, and deserving of a massive malpractice suit. (But, they had Kaiser, so you get what you pay for.)

Nonetheless, what happened, happened, and she's absolutely clinically dead, and has been for years.

If three states out of fifty want to play by their own rules, shift the cost of that care to their residents' wallets, and see how long they remain as outliers against the rest of the country and most of the civilized world.

It's easy to be a human rights crusaders with millions of dollars of other people's money.

But at the root, this is a psychological disorder being catered to out of fear of being called racist.

When Michael Palin is arguing that a stone-dead parrot is alive, it's a funny comedy sketch.
When a family is making the same arguments, on the taxpayers' nickel, in absolute seriousness, it's pathological psychosis.

This isn't a family bravely fighting to keep their little girl alive; it's a family standing pig-headedly for calling down up and believing the moon is made of cheese.

We used to have hospitals that catered to treating that sort of thing, but they had bars on the windows and mattresses on the walls.

CDH said...

It sure seems like the blatant disregard of legally binding end-of-life directives would be malpractice too...resulting in great salivation on the part of the wolves/lawyers. It is a sad state of affairs that lawyers might be our best bet to improve that situation...

tweell said...

Last year, my mother died. The hospital (and I) didn't figure out the underlying issue in time, instead treating the obvious problem and releasing her. She collapsed the next day, and it was too late.

Mom's body was still breathing with the ventilator to help, but her brain had been damaged. She would never walk, never talk, never see again. We prayed, talked to each other, and had the ventilator removed. She passed on an hour lather.

It's harder to let go of a child. Still, ff I was that child, I'd want to be let go of. Let me go to Jesus, please, do not keep me in a body that has become a prison!

Judy said...

Having been involved in more end-of-life situations than I have wanted to be. Here's my take.

Just because the medulla oblongata still has some level of function does not make the person in the bed alive. Even less so, if the person in the bed needs a ventilator to breathe. Stop torturing the person in the bed and let them go. Watched my sister-in-law do this to my brother. (She and their eldest daughter couldn't accept he wasn't going to recover.) Leaving someone on life-support is not about the well-being of the person in the bed; it is about the mental health needs of the living.

C. S. P. Schofield said...

I remember the Terri Schaivo case, and thencrowing the Progressive Left ‘Right to Death’ tools made when an autopsy ‘showed’ she could not possibly have ever recovered.

The thing is, the important issue was, when the f*ck did we go from ‘we may, reluctantly, take you off life support if you have filed exactly the right kind of legal paperwrk’ to ‘we wll jerk you off life support, even if your blood kin disagree, on the unsupported word of a man with a financial interest in your demise that he once heard you say in passing that it’s what you would want’.

Anyone who isn’t scared by that shift is an imbecile.

Yes, the doctors advied. Sweden and a couple of other okaces have had ‘right to die’ laws for a while....and have persistent recurring scandals about doctor directed euthanasia where the doctors have clearly violated their reaposibilities.

Yes, hanging onto the brain dead is morbid. But trusting ‘the system’ to know and judge properly whi is brain dead and who isn’t is a recipe for murder.

Well Seasoned Fool said...

My EMT/Medically retired Army medic son can tell of situations where families fought to keep someone alive because they were living off the person's pension. This was not an isolated case but something they encountered frequently.

urbane legend said...

I was in the conference with my sister when a neurologist told her her husband would never recover from the brain injuries suffered in a severe auto accident. He said, not forcefully or insistently, just as a bland report, " I do not think he can survive without mechanical
assistance. " She said, " I will not let you take him off support at this moment. "

The nurse in the room, a case manager I think, said quite rudely, " You really should take him off support. It will serve no purpose to keep him on it. " Even if that was true, she was extremely insensitive in her delivery of the statement.

My sister, who takes no pushing around from anyone, looked at her and said, " You can leave now, and don't ever talk to me again. "

kurt9 said...

We (at Alcor) recommend durable power of attorney rather than a living will as a means to control one's deanimation. Durable Power of Attorney carries more legal weight. Having a cooperative physician for legal declaration of death also helps. Do bear in mind that in this context, death is a legal and not a scientific term. Anyone with a room temperature and above IQ knows that the only legitimate scientific definition of death is information theoretic death.

Jon said...

I won't use an advanced directive or a living will because it takes the decision away from those who care. My wife is a retired paramedic and ER tech, and my eldest son is a respiratory therapist. So they have a medical power of attorney to make those decisions for me. I have no fears that they will keep me body alive after brain death, but I wanted the decision to be with them.

And before any one says anything about how that might not be fair to them, they are tough, compassionate individuals who will not hesitate to do the right thing.

But they can do it in consultation with my family, our priest, and a friend who is a bioethicist (and an Orthodox Christian). Because I care about more than just this life.