This is my grandfather's story. Judging from anecdotal evidence, his story is sadly not unique.
You can decide for yourself how it relates to Terry Schiavo, though there are some apparent parallels. For me, this is more about what the doctors, bureaucrats, and others involved in the business-level decision making have forced hospice to become.
It's about what the nature of compassionate care has devolved into.
Yesterday morning, my grandfather died young at 96 years old. Before the onset of his illness, he was the youngest 96-year-old you and I are ever likely to meet. He had a quadruple bypass at 91; four years later, he would be pushing his wife in her wheelchair when we visited the zoo. Even after the cancer had taken hold, he had more life in him than most people his age. He could still visit with friends, paint (his lifelong vocation and avocation), and delight in his wife, children, grandchildren, and great-grandchildren.
But the cancer would not be stopped. Chemo and radiation might slow it down, but no hope for a cure was in sight. For a man whose life had seen so much joy, it seemed pointless to endure the agony of those treatments to gain a scant few months. Instead, he entered a hospice program hoping to make the most of his remaining time.
For those unfamiliar with Hospice, it's a program that (according to this site):
... offers a comprehensive program of care to patients and families facing a life threatening illness. Hospice is primarily a concept of care, not a specific place of care.
Hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. The dying are comforted. Professional medical care is given, and sophisticated symptom relief provided. The patient and family are both included in the care plan and emotional, spiritual and practical support is given based on the patient's wishes and family's needs.... Hospice neither hastens nor postpones death. [emphasis added]
For about two months, the hospice care seemed to be the right choice; he was able to remain at home and independent. Because he was bleeding internally, he would visit the hospital for a transfusion every three or four weeks; the additional blood gave him back some of the energy that the cancer was taking from him.
Then last Monday, he went for what would have been his third or fourth transfusion. Somehow it went wrong from the start. Instead of being given blood, he was given morphine; instead of gaining strength, he lost even more, to the point of vomiting blood.
Dr. A-----, who oversaw this treatment, clearly didn't see my grandfather for who he was: full of life and vigor even then. He let himself see only another 96-year-old terminal cancer patient. Same old routine. Pack 'em in, shoot 'em up, let 'em go. A transfusion? Preposterous! We don't give transfusions to the terminally ill. Keep 'em numbed to the pain, that's what we do here. Let 'em stay comfortably numb to the end, and by the way, if that end comes sooner, so much the better.
Grandpa's wife knew this wasn't what he wanted. Over the doctor's objections, she brought him back home. He was very weak by now, drifting in and out of conciousness. By Thursday my brother and I had arrived to help her fight for him. We made countless calls, trying to find a way to get him to a different hospital, telling Grandpa's story over and over again. So often we were told that hospice patients couldn't be given blood transfusions, because hospice patients were to receive palliative care only. But we explained, and they listened. Each time, the person at the other end came to understand that for him the blood was a palliative measure, and how much Grandpa had lost only that week; but there always seemed to be more calls to make. On Friday, we finally were cleared to bring him to a different medical center. We were still hoping he'd receive what he hadn't received before; hoping that we'd get him back, if not where he could have been, then still to some better life than this one that he'd been consigned to.
Friday afternoon, the ambulance came, and we drove to the hospital. And then we waited. And waited. All the while, Grandpa was getter weaker; not only low on blood, but without even having had any liquids since Monday. We had no way of knowing what, if any, damage had been done by the delay.
Friday evening. Meet the new doctor, the same as the old doctor. My brother and I had overlooked one obvious, crucial point in our advocacy efforts: A different building didn't mean different physicians.
Dr. A----- was no more pleasant in person than he'd been on the phone. Giving blood to a patient like this was, in his words, like pouring it into a bottomless glass. He threatened to discontinue hospice services if Grandpa received any blood. We held our ground, and he finally relented slightly: Two units. Two, of the now four-to-six that he might need for his blood to catch up to where it should be. We stayed until we could see the IV go in, then went to get some much-needed rest.
When we arrived Saturday morning, Grandpa was more alert than he'd been all week, and clearly recognized us. That was the good news. The bad news was that he still couldn't talk clearly (aside from asking "how do they get away with it?"). He was also clearly feeling pain more than he had before. His face showed a wide range of emotions as we spoke to him, showing that at some level he understood what we said; but he never responded to our questions. We tried to talk with him, to ask if we should try more blood, or if he'd reached the point where it wouldn't help to try. He couldn't tell us, couldn't give us a clear response with head movements or eye blinks. We knew we'd have to decide ourselves what his wishes would be.
Long before we reached that point, Grandpa had made written instructions allowing his medical proxy to discontinue his life support if his condition warranted it. He'd also said recently that he would be willing to suffer some pain, as long as he was also capable of feeling joy too. Now that we faced this decision, it was only clear that it would never be wholly clear. Was it worth it for him to keep going like this?
We knew who he was. We knew his will to live, his joy in living, his determination to keep doing the things he loved to do. We also knew that he knew that a time might come when it wouldn't be worthwhile to go on. And we could see the pain he was in, and we saw a very uncertain chance that he'd ever gain back any more of his facilities, no matter what treatments he received. Finally, heartbreakingly, we informed the nurses that he was to receive no more blood tests, no more blood, no more saline. Grandpa fell asleep that afternoon, and passed away the next morning.
We'll never know if the lengthy delay had damaged him to that degree; perhaps the cancer itself was to blame. Still, I come back to the question that Grandpa asked: How do they get away with it? How has hospice care been allowed to get to a point where it's not about maximizing a patient's remaining life, but about easing the way towards death?
I know it's not always like this. Almost all of the hospice workers we've met with -- nurses, social workers, and other professionals -- have been genuinely caring, attentive people. Yet they seem to feel fenced in when it comes to treatment options. The rules may say in fine print that treatment is individualized. But in real life, it seems that options for palliative care have been narrowed to providing drugs to numb the pain. There seems to be a subtle pressure -- sometimes not so subtle -- for the family to withold food and liquid, as it would avoid "prolonging the agony". Often this is the right thing to do when the patient is terminally ill and in pain. Yet it happens also to be less expensive than keeping the patient not merely living, but alive. Whose interest was being served when my grandfather was denied blood?