Befuddled 2

Almost two months ago, I reluctantly gave my hospice advocacy presentation to a church’s men’s group.

I say it that way because I had not given the speech for quite a while, several years in fact. But the group seemed sincere in wanting to know more about hospice in general and my personal experiences with it in specific. So I agreed to do a one hour presentation.

Basically, my presentation recounts how I came to learn about hospice when I was responsible for the care of an elderly uncle. While I describe hospice, I try to make the speech as relevant as possible to what people already know about the care of persons with acute conditions,. So I compare hospice to hospital—something most adults have personal familiarity with. Comparing what happens and how patients are treated in these two vastly different environments serves to inform people better than simply explaining how hospices work and why they are like what they are.

As I recount in my personal memoir, Paths of Heart—Writing Stories Told At Life’s End, I had to stop giving my hospice advocacy presentation years ago because I couldn’t take the rejection that I was getting from groups who claimed they were interested in what I had to say. The book is outlined here, so I won’t go into those details now, but I will just say that I am now very selective about to whom I give my advocate’s presentation.

Well, the group I spoke to now more than a month ago assured me they were interested and would show it.

When I arrived, the meeting room had about fifteen attendees and they were all men of a certain age. Since mature people have almost always had personal experiences with death and grieving, I thought they would readily accept the simple messages I try to deliver in my presentation. There are only two:

1. You need to learn about hospice before circumstances force you to make decisions about it—either for your own life or the life of a loved one.
2. As a caring person, you should also talk to people you know who are perhaps going to need to know about hospice in the future, perhaps near future. Maybe the sick, maybe the aged, or maybe people caring for those people.

That’s it. That’s all I ask of them. And since there is only one other certainty in life aside from taxes, I feel that the motivation to accept these dual charges should be high.

But life is what happens when you are busy making other plans, as John Lennon famously once said. And so is death—John Lennon’s untimely one being a most graphic example.

The presentation went well and the audience was attentive, which was signified by the number and kind of questions I got. I felt pretty good as the evening wound to a close.

Well, I’ve had occasion to talk to three of the men when attended my long-past presentation, recently. Good men. Concerned men. The kind of men who attend church men’s group meetings.

Only one had done anything. He had visited an inpatient hospice unit. No one I talked to had tried to talk to anybody else about hospice. And they hadn’t even sought any more information, like the kinds of information I’ve put into this web site. Or even looked at this web site at all, for that matter.  Lots of reasons were given, of course. But there had been no action.

It is not my place to judge individuals, but I feel that I can speak out about general populations. And this is what I have to say:

How could this be? What has happened in our society to cause such a stigma to be put on death and dying that people—well meaning, helpful, caring people—seem to not want be their normal, helpful, caring selves when it comes to the reality of life’s end?

I do not understand.