Over the course of several weeks I’ve listened to interesting and heartfelt discussion on where this young woman’s life may go, depending on the courts. The basis of the discussions and arguments can be read here:
http://www.delawareonline.com/apps/pbcs.dll/article?AID=/20080131/NEWS/801310382/1006/News
Some seventeen years ago my then husband suffered a ruptured aneurysm in the brain, was operated upon and I was warned his chance of surviving the surgery was very poor and not enhanced by the fact that he had two other aneurysms present which they would try to repair. Following a twelve hour surgery which he survived by a thread, I was then told we could only wait until he regained consciousness…”probably within 24hrs.” before any residual injury could be assessed. Forty-eight hours after his surgery I was trying to ponder if there was a difference between his not yet gaining consciousness or the possibility that he was comatose. Asking one of his doctors, I was brusquely informed that “that is between him and his God”. By the end of the week he remained on a ventilator, the naso-gastric tube, and connected to more monitors and machinery than I had ever seen. The next week I was told he was PVS…persistent vegetative state. Coma it was. They didn’t know why, nothing they or we could do but wait and it was in God’s hands. And quiet panic ensued within me. Here was a man looking totally unfamiliar to however he had looked in the twenty-six years we had been married…shaven head now the size of small watermelon, tubes going in and out of everywhere, eyes never open, and despite the ventilator, certainly appearing death had overtaken him already. Then, on top of everything else, he suffered a stroke. There was…and would be…no way of knowing how it affected him until and unless he emerged from the coma which, the believed, was highly unlikely.
For the most part, hope offered to me was 0-0%. He was in NICU for several weeks due to spiking fevers, surgeries for both tracheostomy and to have a PEG put in place…the latter a feeding tube into the stomach as opposed to the naso-gastric tube. He had foot/lower leg splints placed most hours of the day, along with hand/arm splints to prevent his limbs from curling into his body and which would help toward self-movement ’should he recover’. Eventually, when most crises were history, he was transferred into a two-bed room on the neuro floor and the talk began of placing him in a skilled nursing home OR ‘how long are you prepared to see him go on like this?” Two things vying with each other in my mind and my heart….we had long ago discussed this such possibility and neither of us had any desire to be ‘kept alive’ under those conditions, either for ourselves or for each other so we each knew to ‘pull the plug’. That was what I knew. The other was what I didn’t know…was he there, a voiceless prisoner of his body, seeing and hearing all around him with no ability to respond or acknowledge? I had no way of knowing nor did the medical staff. Now, the problem with that was all they could continue to offer was ‘wait and see’. I’d read everything they had given me on PVS, found materials by myself and could only wonder why they were not continually working with stimuli rather than just wait and see. I worked with him, myself…sometimes getting a physical reaction, sometimes not. Excited when I did, I’d run to report it to the nursing staff who would tell me it was simply reflex. At one point I was even questioning the basic knowledge of our senses…primarily touch. Little tests I’d devised on my own…times I would get a response, times I wouldn’t and they had already told me that patients in coma actually do have sleep/wake patterns. They also cough, and they yawn, and they sneeze. They open their eyes, they close them. And all of this is basically said to mean nothing. The one ?positive?…and very thought provoking…is that each said hearing was the “last to go”. What followed were weeks of being harangued into agreeing to his transfer to a nursing home. From day one I had promised him, myself and the hospital that he would never go into a nursing home…a rehabilitation centre, yes. But the only other place he would be transferred to was his own home and I would care for him myself. So, for a time a struggle ensued, being denied a rehab centre and being told I could not take him home. I didn’t give up on either and, eventually, he was moved over 350 miles away to a coma-stim centre near Pittsburgh. No promises were made, no real hope offered but within a year (and a very long story, later) I did bring him home, still at a level of coma but a degree of cognisance, a quadraplegic requiring 24hr. care for all of his needs and the prognosis of perhaps survival of one year. Further therapies were denied him so undertook them myself.
Instead of one year, my husband lived four more. Seven months after I got him home I had him eating real food (which they said he never would) and the PEG removed, the trache was gone (though it had been removed in the rehab centre), I had his meds reduced from thirteen a day to three…which, I believe, is when the better part of his recovery began.
The point is…we just DON’T know enough to make a judgement on life or death at will. How valuable were those last four years of my husband’s life to him? We can never know…I don’t even know if he knew. He couldn’t talk…he could mouth responses to very specific questions. There came a point when he could actually raise a fork to his mouth and eat for a few minutes. But all of that aside…and for myself…it seemed obscene, immoral and unconscienable that they spent twelve hours on a surgical procedure only to bring him back to a bed and prolong his dying by doing nothing further than to suggest warehousing him in an institution, cared for by people who didn’t even know him, who he had been, what he had been capabable of and unwilling to see what he yet may accomplish. It’s nothing against such people…it’s just the nature of nursing homes, the workloads, the rules and insurance company dictates.
But for sure it’s not for courts or government bodies to make decisions such as those. Families need to decide these things for themselves. As individuals, if we have adamant wishes to be adhered to with regards to disposition of our bodies and minds then we have a responsibility to take charge and make them known by our own hand rather than leave it to Mom, Dad, spouse, child to wrestle with. Reading and listening to Lauren’s situation I fully understand her mother’s heart…my only surviving daughter died at 21yrs. of age and I have no doubt whatsoever this is a very tough decision for Lauren’s mother. No Mom wants to see her child suffer in any way…be it excruciating pain or a silent, immobile prison of his/her body yet, at the same time, the very thought of losing even that is unbearable. I can relate to her father and fully understand his feelings, his hopes and what he wants to do to help his daughter perhaps return to something resembling life. Neither is wrong, in my humble opinion but whom is more right?
