The Terri Schindler-Schiavo story hits a little too close to home for me. I can relate to her parents' struggle to save her in many ways, and if my belief in the sanctity of human life did not already make my sympathetic to their plight, my own personal experience would.
In the 1980's, my father began to show the symptoms of Alzheimer's about the same time we discovered my mother had cancer. I began to spend more and more time with them as their illnesses caused them to need more help, and when my mother had her numerous surgeries, I would move back home to provide caregiver help. However, in the late 80's I had my own surgery to contend with. While I was in the hospital, my mother who faced another surgery without my help, put my father in a nursing home on the other side of town.
I won't try to share how difficult it was to be buzzed through the locked doors to see my bewildered father in such a hostile environment during the first weeks. He still recognized me and could carry on limited conversations when he first entered the institution, and he always tried to follow me out. He didn't want to stay there and I didn't want to leave him but the decision had been taken out of my hands. He went downhill quickly away from his family and his familiar environment, but he eventually settled into the routine and mayhem of the nursing home. Would he have ever wanted to end up like that? No. However... that is not to say he did not have "quality of life" once he was in that condition.
I believe my father accepted Christ in the nursing home In 1990. His vast intellect had stood in the way of faith for so many years, but in a more childlike state, he loved singing old hymns and children's songs with me. The concept of going to heaven to live with Jesus made his face light up.
THE BATTLE BEGINS
In June of 1992, my father fell and broke his hip. No one knows how long he lay on the floor in his room, but he was transferred to a local hospital so his hip could mend. That is where the three-month battle for his life began, because he had signed a living will.
When he arrived at the hospital my father had been eating regularly in the nursing home dining room (and enjoying his meals immensely), but in the hospital he was prone and unable to feed himself. He was hooked up to an IV, but it was removed prior to his return to the nursing home. He never had a chance to resume his normal habits as he was still bed bound and now unable to eat or drink without assistance. He began to dehydrate without the IV. I was told the nursing home was unable to insert an IV, so I requested he be returned to the hospital to have the IV reinserted. Once my father arrived back at the hospital, I was fought every step of the way. I would leave the hospital with the understanding the IV would be put in just to return the next day to find it had not been put in.
My father's doctor was a terse, abrupt man who told me that my father (new Christian and lover of children's songs), had no "quality of life." Dr. Bodner told me that when his own father had Alzheimer's, he let him "die with dignity" as soon as he was unable to feed himself. I countered with the fact that my father HAD been able to feed himself up until the fall - he just couldn't feed himself lying down, and he had lost his routine. It took several days to get the IV reinserted, but by then my father had grown quite weak. Now he needed a feeding tube in order to build his strength back. I was distressed at the thought of having a feeding tube inserted, but again, up until this point, my father had enjoyed walks in the nursing home garden, sitting together singing songs and talking about heaven where he would see my mother again (she had passed away in 1991). All he had was a broken hip which was mending nicely. Since my father needed to regain the strength he lost when the IV being was removed, I asked for the feeding tube to be inserted.
Dr. Bodner objected and delayed. He was condescending to the point of belittling my relationship with my father. He even pointed out there were others who had a chance at a better "quality of life" who needed that bed. When I insisted the feeding tube be inserted, he punctured my father's lung inserting the tube. The tube never got inserted and now my father had a punctured lung in addition to the broken hip and loss of nutrition. Soon pneumonia set in, but the old soldier and decorated war hero fought on.
In August a staph infection set in and the hospital would not give him pain medication because there was a 20% chance that it would slow his breathing too much... however, they wanted me to take him off the IV so he would dehydrate and die. After listening to my father moan for a few days, I adamantly insisted that pain pain medication be administered pointing out I would rather take my chances with the 20% and give him some relief than withdraw the IV and let my father slowly and painfully die. An hour after the pain medication was given, my father passed away (three months after the fall), but before he died, he opened his eyes and looked at me for quite some time. He appeared peaceful and relaxed for the first time in weeks.
I hate Alzheimer's but I saw God work through it to reach my father, and during those days of singing in the garden, my father and I rekindled the closest time in our relationship - when I was a child. We shared some very special times before he was hospitalized. If my father had had an IV when he returned to the nursing home and been fed by caring attendants after the fall until he regained his strength and his routine, he would have have recovered physically. There is no doubt in my mind. But the living will was translated by the medical experts as "If he can't feed himself, he dies."
No longer am I impressed with the omniscience or care of the medical profession. My mother's death was also fraught with trauma as a result of her signing the living will. In her case it seemed to mean that the nursing home where she spent her last month would not feed her, hydrate her or even change her diapers if I was not present.
DYING WITH DIGNITY???
I was told that letting my parents die with no hydration or nutrition was "merciful." I watched BOTH of my parents go without food and hydration as the all-knowing medical community determined not to put them on IVs until I insisted. When my parents would moan and writhe, I was told they were feeling no pain - that it was just the body's involuntary reaction. Reaction to WHAT? I know pain when I see it, and dying with no hydration or nutrition is NOT painless nor is it fast. It is certainly NOT merciful.
My mother's mouth was so dry there was dead, caking skin coating her mouth and tongue. She would turn and toss and moan. Her face was an agonized grimace. When I inserted what looked like a pink sponge lollypop in her mouth, she would turn towards it and work it eagerly in her mouth to get the moisture. Her expression would become intent as she worked on the moist sponge. It was evident the moisture provided some relief.
My father wouldn't just moan, he would cry out in pain. I had been with my parents continuously - I certainly knew the variations in their outcries and moans. Still the doctors tried to convince me they felt no pain. I was eventually able to get them both on an IV, but they continued to evidence the trauma of starvation until they died. When I was finally able to persuade the nurse to give my father something for the pain, the change from agony to relaxation was painfully obvious.
WHO DETERMINES QUALITY OF LIFE?
And who are doctors to determine "quality of life?" I think my father had an odd sort of quality of life prior to his fall. He watched television. Then he would roam some. Volunteers came in and sang, played piano, entertained, and he enjoyed that. I would visit regularly and he loved those times. He enjoyed walks in the gardens, singing old songs, and he especially enjoyed mealtimes. What doctor has the right to say he had no "quality of life?"
From watching the clips I have seen of Terri and her mother, all appearances indicate Terri loves those visits. Several doctors have said Terri might respond to physical therapy... and her husband received a vast amount of money to spend on her rehabilitation. Not a dime was spent on that.
Fifteen years have passed and still Terri holds on. Who knows what is going on in Terri's mind? And who can quantify her "quality of life?" If there is a chance she can recover - and more than one doctor has said there is that chance - she should be given the care and rehabilitation her husband promised her when he received the money to provide that care.