Ten-Finger Exercises

Denial or not

Hospice patients are referred by their doctors, or at least admitted by their doctors after a referral from, say, a family member, when the doctor is ready to certify he or she thinks the patient has less than six months to live.

A sizeable number of patients are referred so late that they and their families get very little of the benefit hospice has to offer. The statistics are off the top of my head, but I'm guessing that one in ten patients dies within the first week, before the family even meets all the staff who would otherwise be in place to help them.

The reason for this is sometimes an unexpected event, a heart attack or aneurism or blood clot; 90% of the time (another guess rather than an actual statistic) it's because someone was unable to see the process of the disease progressing. Not that it's at all clear how much time someone has-- absolutely not. I'd never say that it was.

Doctors, whose business is healing, don't "give up" easily. They match their wits against some terrible odds to keep a patient alive a little longer, maybe to halt the process and get him into remission. Sometimes they approach their job as if the patient could be snatched from death's jaws and the whole disease process reversed, or so it looks.

Even after doctors have agreed that palliation of symptoms has become the more important goal, that healing is no longer a possibility, the patient and family may still be in denial. "No, not yet, he could still get better." "I just have a little case of the flu or something." "It's probably just gas."

My favorite example of the universality of denial comes from the number of times I've heard ordinary, healthy people say, "If and when I die...." That we really will die, each one of us, is, on some level, impossible to comprehend. Theorhetically we may believe it, may even think we accept it as inevitable; but to actually be ready to take our last breath is an act of grace.

The hope of hospice staff is that we can help patients and their families live each day of their lives as well as possible, in the way the patient wants and the family can accommodate. If the patient wants to die at home, and the family can manage to do that, physically and psychologically, then we offer all kinds of support to make that happen.
Some patients hope against hope that it won't happen, that they'll miraculously be cured. Then we hope with them, even though we don't expect it to go that way. I've seen half a dozen hospice patients discharged because they quit getting worse, and we all celebrated.

It's difficult to be with the hopeful patients. We don't want to encourage false hope in ways that will leave them more vulnerable, unprepared. On the other hand, we want to be genuinely "with" them, in spirit, hoping for the best, not trying to dash their hopes with large doses of reality. The reality is real for them too: it's not completely hidden.

One of my patients, a young woman, has great faith that God is with her, and that God could heal her at any time. If anyone deserves it, she does; deserving has nothing to do with it though. For a couple of months in the fall it was clear that she was getting worse. That's no longer so. Some of her medicines have been reduced, and symptoms have improved. For now, she is better than she was when she first came to hospice. I'm glad. Glad that she and her family had a good Thanksgiving, and may have a good Christmas as well.

Occasionally there's a person in the family who believes that we don't dare doubt that a complete healing will take place. That person blames doubters for keeping it from happening. They claim to know that Christ wants the person to be well, and they forbid anyone suggesting anything to the contrary. That's a terrible situation. It has nothing to do with Christianity as I know it. It has to do with fear, and control.

I'm very thankful the young woman I mentioned is not in this camp. Her faith is strong, but it is more reasonable than this scenario. She admits she doesn't know why she hasn't been healed, but knows it isn't punishment for something she's done. That's healthy. The best prayer I know for her and for all of us is to know how long to keep fighting and when to accept whatever comes. The Christian hope is that death is not the end, that there is more to come.