I was up far too late last night finishing this
Eleanor Clift, the author, is a reporter whose husband was
dying at home under hospice care during the same two weeks that
Teri Schiavo’s feeding tube had been disconnected.
I had ordered the book when I read the review
in the New York Times,
because one of the things I wanted to use this daily blog to
write about was my experiences last year with the death of my
I had expected to be more interested in the account of the
husband’s death than in the interviews with all the participants
in the Teri Schiavo frenzy. I was, but the Schiavo stuff was
better than I expected, especially the stuff about the role of
the Catholic Church.
a small number of weeks before he died, Pope John Paul II had read
a pronouncement that getting food and water through a tube was not
an “extraordinary means” of prolonging life, which was interpreted by
some people to mean that Catholics were prohibited from ordering
the removal of feeding tubes. However, in his own end of life
care, a feeding tube was inserted and removed twice.
One of the links between the two stories is that Clift feels the
hospice movement didn’t do a good job of getting the message out
about what its aims were, when hospice caregivers were being attacked as
murderers by the Right to Life people.
My own experience with the hospice facility where Bonnie spent
her last month was very different from the one described in this
book, probably mostly because I wasn’t being a caregiver, so I
wasn’t getting all the training and support I would have needed
to do that. My difficulties communicating with Bonnie’s
caregivers are another post, but I was certainly glad to have
the internet to look up vocabulary like “active phase of dying”,
because I wasn’t getting good explanations of it from the
One of the points of this book is one I have been trying to make
since last year: that we spend too little time thinking
and talking about dying, which makes it much more difficult for
us to get through it when we finally have to.
Anyway, if you’re interested in any of these issues, this is a
well-written book. It could have used a bit tighter editing:
there are places where the same anecdote is repeated in
different chapters, But on the whole, it’s really well-written
and if you want to think about how to communicate with the
medical profession and how to make decisions about how to die
and what the religious contribution to the politics of all these
decisions is, you should read this book.