The kiss of death

The case of Terri Schiavo, a woman who fell into a vegetative
state 15 years ago, has polarized the state of Florida and drawn
the attention of a nation to the topic of death.
The questions raised by the case cast in sharp relief the
questions medical ethicists have asked themselves for years.
What is the meaning of death? Who holds the right to decide its
time, place and means? Can the desire to lapse into eternal
stillness be healthy? And can the same hands that heal be entrusted
to kill as well?
The case of Terri Schiavo, a woman who fell into a vegetative state 15 years ago, has polarized the state of Florida and drawn the attention of a nation to the topic of death.

The questions raised by the case cast in sharp relief the questions medical ethicists have asked themselves for years. What is the meaning of death? Who holds the right to decide its time, place and means? Can the desire to lapse into eternal stillness be healthy? And can the same hands that heal be entrusted to kill as well?

In the United States, as in many of the world’s developed nations, the notion of death is technical.

Here the standard is brain death, when all electrical activity in the brain, the most vital sign of life, ceases. The body itself may be kept alive via artificial means, but the person who once inhabited it is deemed to be gone.

If that person is young enough and the family is willing, these beating-heart cadavers may become organ donors before the plug is inevitably pulled, writes Mary Roach, author of “Stiff: The Curious Lives of Human Cadavers.”

But brain activity may not stop completely. When the body experiences severe trauma, such as that suffered through stroke, head injury, hemorrhage or infections like meningitis or encephalitis, the brain may continue to record a minor level of activity, and the heart and lungs may continue to function normally.

In the short term, this state is called a coma or, as days progress into weeks, a persistent vegetative state. And with each week, the chances of the person laying motionless in a hospital bed waking to experience a normal life again dwindle.

“We usually give them a month,” said Dr. Anthony Vitto, a Gilroy-based neurologist. “At that point, not too many come out of it, or they don’t come back normal, put it that way. People can be in comas for years, and those are the kind of people who can occasionally, miraculously wake up one day, but they’re sort of mythical, anecdotal kinds of cases. Most people who are kept alive this way die within a year.”

Though loved ones know that their relatives may never wake up, the decision of whether to pull the plug, to euthanize another human being, is heart-wrenching. If the unconscious party leaves no instructions, the spouse or family is left to make the decision.

In most cases this decision is made amicably, but in the Schiavo debacle, the families have met with disagreement.

Michael Schiavo wants his wife’s feeding tube and water source removed, while her parents have asked for life-sustaining measures to remain in place, charging that Michael has abused and neglected Terri, who fell into the state when a chemical imbalance believed to have been brought on by an eating disorder stopped her heart.

The court battle over the case has raged for seven years, with last-minute interventions prolonging Terri’s life on more than one occasion.

But this time her parents, Bob and Mary Schindler, may be on the losing end of the fight.

On Thursday, Circuit Judge George W. Greer blocked an attempt by the Florida Department of Children & Families to stall the March 18 removal of Terri’s tube, denying their request to investigate claims of abuse lodged against Michael by the Schindlers.

The claims had already been investigated on numerous occasions and been found false, the judge said.

Still, doctors and ethicists debate the notion of active euthanasia. Euthanasia differs from assisted suicide, in which a patient who is lucid and competent, but deemed to be within the last six months of his or her life and suffering from intractable pain, requests the administration of death rather than a drawn-out, painful end.

With euthanasia, the decision to end a patient’s life is made by an secondary party, usually a spouse or family member. Active euthanasia, which is what Michael Schiavo requests for his wife, consists of removing life-saving means, such as tubes that provide vegetative patients with food, water or air.

“There’s something just not agreeable about starving someone to death,” said Vitto, who noted that most physicians and families prefer the practice of passive euthanasia, whereby a secondary infection such as pneumonia or sepsis is allowed to go untreated so that the person may finally die. “That’s either in the living will or it’s just agreed upon by the family.”

According to Rita Manning, chair of the philosophy department at San Jose State University and a professor of medical ethics, “I think the official position of the American Medical Association is still probably opposition, but I think sort of privately, one of the things physicians will tell you is that, as a matter of fact, this is a practice that goes on all the time.”

Though some may consider it a crass effort at reason, economics can play a role in this decision as well.

In the event of a major head injury or other brain-related health issue that would place a patient in a coma, those who have insurance will be covered, but only up to a point, said Dave Fluker, an independent insurance agent in Gilroy.

“If you have an HMO plan, technically it’s unlimited coverage, but on the side, I think it’s well-known that HMOs will find a way to limit that,” said Fluker. “They can’t kill you off literally, but in reality, an HMO is not going to spend $30 or $40 million to give you the best and most advanced care available. If you just keep lingering and lingering, they’ll just keep you in the most basic state.”

PPO’s, which generally offer more open access to coverage up front, are written with lifetime spending caps, often topping out at $5 million to $6 million in care. Once that amount is reached, the insurance policy is canceled, said Fluker.

If the person on life support is insured, this extra cushion of time can allow the family to consult with an attorney, restructuring their assets so that a vegetative loved one can be cared for through MediCal, which imposes limits on income and assets for those who wish to qualify, said Fluker.

Families themselves can choose to pay for their loved ones’ care, but the costs mount quickly. The average cost of long-term care in the Gilroy area is $140 per day, according to Fluker.

Low for California averages, the costs still mount. Nursing home care doesn’t take weekends or holidays, vacations or sabbaticals.

Sum total, that $140 dollars per day adds up to more than $51,000 per year, and if a family member should cling to life in a vegetative state for long, the entire family could be placed in serious financial jeopardy.

In more expensive areas, the costs can rocket to more $85,000 for a mid-range facility, said Sandy Rose, owner of Sandy Rose Insurance Services in Hollister.

Long-term care insurance is not a common item for many people to purchase, but is recommended for those who face family histories of longevity or incapacitating illness.

Ranging in span from two years of coverage to unlimited lifetime support, the policies can be expensive, but ensure peace of mind for buyers.

“Someone in a coma could be put into a skilled nursing facility,” said Fluker. “MediCal does cover that. The only downside is, with a private policy, a family has a choice of where they want to go. If the policy covers up to $140 per day for two or three years and the facility near them costs $175 per day, they can choose to pay the difference.

“With MediCal, it’s predicated on where the state says they have an open bed. That way, it’s feasible that a family in Gilroy could end up with a loved one at a nursing home in Bakersfield.”

The best way to avoid confusion and fighting among family members over the terms of your end-of-life care, said experts, is to author a living will.

Describe for family members the life-saving steps, if any, you would like to have taken in the event of an emergency, the means in which you would like to be treated should you become incapacitated at some point and consult an insurance agent specializing in long-term care coverage about policy costs if you believe you will need such coverage in the long run.

For a 40-year-old person in good health, a two-year coverage plan with a benefit of up to $150 per day would result in a monthly fee of around $60, said Fluker. Unlimited care at the same benefit rate would cost a much higher $160 to $170 per month.

“Any insurance is kind of a gamble,” said Fluker. “You hope you don’t ever have to use it, but it can be reassuring to know it’s there.”

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