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Thursday, March 31, 2005

Meditations on Terri Schiavo and The End of Life

The case of Terri Schiavo is one that touches my own life in a deep and hurtful manner. I have nothing but sympathy for all the parties concerned and I do understand what emotions are flying through the families.

When I was a young man, I met a bright and vivacious woman of many accomplishments who happened to be 21 years my senior. Despite the age difference, we fell in love. We did not marry until for five years, a few months after she finally achieved a PH. D. (which she added to four other post-graduate degees she had accumulated). We became the typical Manhattan workaholic couple, each of us laboring hard in our respective fields. We traveled and planned and loved each other, children being the only thing that we never managed. But we had each other. And an embarrassing quantity of cats.

In 1994, she developed post-operative pneumonia after some elective surgery and was in a coma for five days in New York Hospital. When she came out of the coma, she stayed in the hospital another five days before coming home. She was weak, she required constant care for the first few months, and I am grateful that my mother was able to attend her during the day. She slowly regained some of her health, but as they say in her native Tennessee when discussing shotgun wounds “you may get better, but you’ll never get well.” She was very active, but after that she was never as strong again. New York City was taking it’s toll on her breathing, and so we decided to move to Florida after searching for alternative locations to live. She was able to retire on disability from her university position, and in 1996, we built a home just north of Tampa.

We lived here for a few years and she enjoyed gardening, amateur theatre and meditating. She was fanatical about getting flu shots and getting medical attention. In January 2003, she developed bronchitis and was hospitalized for 7 days. But she still suffered after her release and in March, she asked to be taken back to the hospital and she was admitted through the emergency room, suffering from pneumonia.

I cannot help that what follows sounds like a diatribe against the medical profession, I have developed a bottomless reservoir of rage against the doctors here in the Sunshine State after that experience, for the care she received here was miserable. She was then old enough for Medicare and health insurance from her former employer covered what Medicare did not, and she had tertiary catastrophic medical insurance as well. And yet she had to beg for care. She was attended by our family physician, by an infectious disease specialist (the spouse of our family doctor who had been called in for consultation, not coincidentally), and a pulmonary and respiratory specialist she had seen for years. The nurses were hardly the Florence Nightengales of television drama, but sullen and indolent whiners complaining about their lot in life, their pay, their schedules, the doctors, and resentful of every moment they had to spend away from the pastry box at their station. The hospital moved her from room to room three times in four days without explanation, and when one nurse asked her why she was writing everyone’s name in her dayplanner, my wife replied that she was going to write a letter of complaint when she was discharged and wanted to get all the particulars correct. The next day, while she was out for another test, the information was torn from her planner.

She raised hell with the director of nursing and was moved again, to a private room this time, with more sympathetic nurses assigned to her. But it was too little too late. A day later, she was moved to intensive care as she had only ten percent of her normal lung capacity and her heart was beating 180 times a minute to support her life. They placed her into a medically-induced coma for two weeks and started her on a ventilator with 100 percent oxygen.

For two weeks I stood vigil and consented to the eventual tracheotomy they had to perform, which broke my heart as she was a singer with a lovely voice. When they brought her out of the coma, she displayed signs of motor difficulty indicative of a left parietal lobe stroke, which a CT confirmed. They had apparently been pumping her full of anti-clotting medicine after their inept insertion of IVs had caused clots to form in her arm. She was not subject to clots, did not have any cholesterol problems before the “care” she received from these devotees of Asclepious. To this day, I believe the anti-clotting medicine precipitated the stroke, although they certainly would never admit it.

She ceased to produce urine in the catheter, and they called in a urologist to insert it, which he did with much complaining. I could hear him from the hall outside her cubicle in ICU. By the time her stay in this hospital was finished, she had eighteen doctors of various credentials attending her. They asked to do a test on her for which she would have to be taken to the operating room, to see what was wrong with the kidneys. They were going to inject some dye in her to help trace the flow of blood. She had some kind of seizure in the OR and became unresponsive after that. And she was not the only one to become unresponsive.

I cannot adequately convey the things that pass through one’s mind seeing the person you love stare mindlessly at the ceiling, her lovely, intelligent gray eyes without a thought in them. Words fail. Despair, horror, grief, guilt, anger all combined in a cocktail shaken with generous portions of prayer and a faint dash of unreasonable hope and served over the ice in your belly. The staff, doctors and nurses, began to eye me with the unmistakeable look of soldiers in enemy territory. The family doctor altered his hospital rounds to times when he knew I could not be there, out of keeping with his work habits to that point. A neurologist consulting on the case walked past me like I was invisible when I saw him coming out of her room, despite my calling out to him. Another neurologist screamed at me when I questioned him too closely. On the whole, the lot of them behaved like puppies who know they have messed the carpet and are avoiding the inevitable reckoning. The only conversations we had, incessantly it seems, were about discontinuing life support. One of her regular physicians, the respiratory specialist, insisted that she would not want to live like this. As if he knew. Or cared.

You see, I did know. In 23 years of living with this amazing woman, we had had this conversation a few times. You do that when there is such a difference between the ages of the two partners. She believed in life. Always. She was loathed to weed her flower garden because weeds were living things, too. She planted the seeds from every piece of produce we consumed. Stray animals were instantly adopted. And when we had prepared our wills two years prior, she had refused a living will. Moreover, she had refused to be my healthcare surrogate, stating that she would never turn off my life support as long as my heart could be made to beat. Hope to her was a tangible thing, part of the fabric of her being. I had to have our lawyer designated as I did not want to exist only technically alive, the basic needs of existence provided by others. She was not pleased with my decision.

But this information had no impact on the staff. They harangued me constantly about DNRs and cutting off her life support. She had to be dialyzed and their favorite suggestion was for me to stop dialysis. All the stuff Michael Schiavo has been heard to say about slipping peacefully into a coma and quietly dying, I heard that a hundred times about cessation of dialysis. One would think that it were a boon to the terminally ill to suffer unaided kidney failure.

And yet, no one could explain exactly what was wrong with her kidneys.

While all this was going on, they were trying to get her out of their ICU. They contacted a rehab facility to find her a bed there, but they could not move her while she required both dialysis and a ventilator. In total, she spent eight weeks in ICU and every hour I was there, I got THE LECTURE until I finally told them all I would get a lawyer if they didn’t stop. I knew her mind, I knew what she wanted, and I was carrying out her wishes. In truth, I also lived on hope.

One morning, I got a call from the night shift nurse. The dialysis was no longer possible, her catheters had occluded with clotted blood and they would have to move them. Again. A snippy nephrologist was conferenced in with the nurse and he told me that he had decided not to move the catheters, that dialysis was not effective anyway. By now, she was pumped so full of fluids that her skin began to split and weep. He cut me off, shut me down, and if he had been standing in front of me at that moment I would have been hard pressed not to knock him on his ass and kick him in the crotch.

The problem was that I just could not trust the people who were caring for her, they were such cheer-leaders for her demise. I began to suspect they wanted me to bury the evidence of their ineptitude. I felt that their advice was self-serving at best. And then there was the cost, of course.

What you need to understand about Medicare if you do not already know is that Medicare limits contractually what can be charged by any care provider for specific services. Not just what the provider can charge Medicare, but what can be charged at all. As I said, my wife had secondary and tertiary catastrophic insurance, the last with a limit of two million dollars. But all the services the hospital was providing were limited by the Medicare Diagnosis Related Group structure (DRG). What this is, in layman’s terms, is a comprehensive list of all procedures from all medical specialties and each one has an attendant fee to be paid to the provider. Medicare determines what will be paid and pays between eighty to one hundred percent of the fee. Private secondary insurance will pay the other twenty percent where needed, but only according to the DRG table. Catastrophic insurance will pay other things not included in the DRGs, but in my wife’s case, this was moot. When I finally saw the full bill for my wife’s stay, it was about seven hundred thousand dollars. But Medicare would only allow an amount less than two hundred thousand to be collected for those same services. They were losing money in a big way every day she stayed there and they were desperate for it to stop. They could not get rid of her as long as she was dependant on both a ventilator and dialysis. Her death would have stopped that cash hemorrhage

I had by now lost hope and was haunted by the terrible suspicion that she might be aware of some of what was going on, suffering horribly. You could not tell from her lack of response, though. I spent my time with her sitting near her bed, reading, her hand placed on top of mine. I kept her favorite stuffed animal tucked in next to her, I sprayed her with her favorite perfume and kept classical piano music cds going from a portable cd player (which the hospital helpfully would not let me plug in, the cord not having a third grounding prong, forcing me to keep a supply of batteries about). I talked to her, her friends and family visited, but no one got her to respond. The videos of Terri Schiavo tracking a balloon break my heart, I would have rejoiced to get anything more than the blank lifeless stare she returned.

When the doctor terminated dialysis, I looked at her poor, fluid-bloated body, wrapped in gauze to contain the leakage from her skin, her lifeless eyes, and reluctantly decided not to force the issue of dialysis. I had not seen the hospital bill at this point, and was not aware how bad this was for them financially. My concern was her suffering. I tried to get the local hospice to help me take her home for what I thought would be her final week to fulfill an oft-stated wish she had to die in her own bed and ran into another excess of institutional compassion. It seems that the ventilator was considered lifesupport and the hospice refused to provide care for her unless it were replaced by a tracheotomy collar, a small device not unlike an oxygen mask. This would mean that she would struggle for every breath as the mask would provide oxygen but not breathing assistance, which she was now dependant upon. Instead of the five to seven days that it would take for her kidney problem to put her into a full coma and kill her, it would probably be only two or three days of agony before her heart gave out. And it was not an issue that they could not do it, that they did not have the skilled personnel, they readily admitted that they did. It was just against their policies to do so. Whenever I hear Matt Lauer touting the compassion of hospice on television, I remember the institutional coldness and stubborn insistence on policy that would have my wife gasping herself to death.

But my wife fooled them all. Without warning, her kidneys began working again after six weeks of inactivity. I began to hope again. So did the hospital; they saw a ray of hope that they could shunt her out of their ICU and into a rehab hospital. Within three hours of being notified of an available bed, she was transferred 50 miles away to the nearest facility. Eighteen doctors had to sign off and it was done in three hours, while it took them three full days to get me the results of a CT scan.

Ten days later, on Mother’s Day, I was at her side when I noticed that she was nodding her head in answer to something a nurse was saying to me. Just ever so slightly. I was overjoyed! I thought a miracle had happened. She answered with nods to various questions. She shook her head “No” when I asked if she was aware of how much time had passed, and “No” to whether she recalled anything that had happened to her while she was in ICU. She remembered going in there and then nothing after the coma was induced. I was so grateful for that. I told her that I loved her, and that I would care for her and that I wanted her to get well and come home. When they pushed me out the door I was on the phone to her family and we were all overjoyed.

She died the next day.

I got the call on the highway, while driving 70 miles an hour, from a nurse who had ascertained exactly where I was and what I was doing before blurting it out. I very nearly ran off the road. Ten minutes later, I did the hardest thing I have ever had to do: pull that sheet down and look at her lovely eyes, now lifeless, her skin mottled blue. She had gone into a respiratory crisis and it had been too much for her. I cried like a baby, without any self-consciousness about it. The hospital called me that evening and wanted to know how soon I could get her body out of there.

Since she had passed away under doctor’s care, no autopsy was required. Is that ever a misbegotten rule! I paid for one to be done, and it showed that she had developed a hematoma in her abdomen from a laceration of her urethra near the bladder, a place where it was likely caused by the athletic insertion of a catheter by a frustrated urologist several weeks prior. The nurses had made me aware that there was a large hematoma in her abdomen from causes then unknown, but did not think it was safe for an attempt to find and repair the cause. That it might have revealed that she was injured by a doctor at their hospital probably never crossed their minds. Medical professionals I have consulted see nothing wrong with her kidneys from the findings of the autopsy report.

Because of recent changes in medical malpractice law here in Florida, none of the lawyers I consulted were willing to sue the physicians involved. I do not blame them, they are in business to make money. I have not given up; I will get justice for her one way or another in the future.

Her family was very supportive of the decisions I had to make during her stay in the hospitals and remain so to this day. They are wonderful people whose love and support have enabled me to survive when my purpose for living had stopped.

Since then, the physicians of Florida have been busy again. They pushed a constitutional amendment onto the ballot in 2004 that dramatically limits the amount of fees malpractice attorneys may receive when they prevail in lawsuits, further eroding the viability of such legal action. One attorney told me he would have to spend sixty thousand dollars in costs to bring my case to trial, with no guarantee of collecting anything from a jury probably made up of seniors who reflexively salute anyone who calls himself an “MD.”

[Attorney’s retaliated with two amendments of their own, giving greater access to doctor’s medical records and revoking the licenses of any doctors who lose three malpractice suits. All three amendments passed with at least 70 percent of the vote. "A pox on both your houses" seems to be the principle at work here.]

All this has been rekindled by the Schiavo case, which was coming to it’s first climax back then. I honestly do not know how I would have felt if my wife had remained in that state for years without improvement. As it was, she was in far more critical condition than Schiavo and I was desperate to keep her alive, to bring her home in any condition, to give her some chance at more life. The despicable and callous treatment my wife received has colored my attitude for the worse about everyone who practices medicine, especially those that gravitate to Florida.

I predict that medical care will get worse in Florida, because doctor’s do not police themselves, contrary to their incessant prating. Floridians have lost an important tool to redress the damage that is done. I further predict that the climate will change as care gets worse, that the restrictions on malpractice suits will be rolled back in a few years. I do not think that we will lose practitioners on balance, as more will take the place of any who leave. Doctors like good weather, too.

As for my wife, I hope someday to see her again in the place where she has gone. I hope she did not suffer too much during her final months. I hope she understands that I did the best I could to fulfill her stated wishes. In the meantime, I have much work to do.

1 comment:

  1. Enrico1:51 PM

    There is so much perpetuating the life of your beloved spouse. Not only are there instant memories of her character, but what of her accmplishments? So many goals were reached and accomplished because of her wisdom and guidance. So much art and personal beauty was bestowed upon us all because she made it happen - and insisted on the best, not only from us, but from herself as well. She will never die.

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