Then you know, ‘Okay they've been
through that negotiation. They're
finally accepting and letting go.’
Some patients lived in the house where everyone
went after school for cookies. You know the families
where every holiday was a gathering of at least 20
people. If that's how they lived, that's how they're
going to want to die. Sometimes staff members will
say, "There's too much activity in that room." Well,
that's their opinion. If that's what the patient is used
to, then, yes, they can die with 15 people in the
room. I don't want that many people around me but
I respect that's how it is for some people.
We assume that family wants to be at the dying’s
bedside. I ask them, "Is it your hope or expectation
that you'll be present at time of death?" Sometimes
we assume that the patient doesn't want to be
alone. Some patients choose to die when no one's
in the room. My role is to know the patient as a
person, and be an advocate for them and their
wishes— whatever their wishes may be.
Too often people want to educate the patient and
their family. Some patients and families don't want
to know. They just want to take things as they come.
They don't want to anticipate. Expectations cannot
be imposed. You have to feel it out for yourself.
There's an in-between state. Sometimes patients see
things with their eyes open. I actually mean literally
their eyes are open and they’re seeing things. They
don't always share what they see. There's a reason for
the veil between the living and the dead. The dying
can see through the veil, but this is a knowing that
they're not supposed to share. Once they are in that
in-between state, they have an understanding of why
we were not supposed to see too much here. Dying
patients know that what is being communicated to
them is, for the most part, just for them.
In the grand scheme of things patients experience
deep realizations of peace, and understanding—
realizations that they keep from us. It's all a part of
the letting go.
There is a Buddhist expression, “In death we are
all beginners.” Before I started working in hospice,
I thought I knew death from all the losses I had
experienced. My hospice work has helped me to
realize how little I know. Every patient is unique, every
death is different. There are similarities for sure, but the
more you work in hospice, the more you appreciate
the surprises and the mysteries of life and death.
LIZZY MILES, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and an editor and
writer for Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey
Pokey, Chocolate Cake, and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe
concept to the United States. TWITTER @LIZZYMILES_MSW.
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