Honor Their Wishes
Dying People—Like All People—Need Respect and Support
By Cat Saunders
Some people think it's impossible to communicate with someone who's in
a coma or has dementia. Some people believe that when dying people can
no longer speak or write or open their eyes, or when they're "in
another world," this means they can't communicate their needs.
I disagree.
In my experience, it's absolutely possible to communicate with people
who are no longer able to do so in the usual ways. Of course, it helps
to have training in this work, but an open heart and a willingness to
"find a bridge" can go a long way toward making it happen, training
or not.
If you go to a foreign country, do you expect the people there to speak
your language? I doubt it. You probably know that the best way to communicate
with people in another country is to use their native tongue.
It's the same with people who are dying. When you visit a loved one who
is dying and no longer able to communicate in the usual ways, imagine
that you've arrived in a foreign country. It's not helpful to expect the
dying person to relate to you on your terms. Instead, it works better
if you consider yourself a "visitor to a foreign land," and
find a way to bridge to the dying person's world instead.
At the end of September 2004, the 92-year-old mother (Anita) of my dear
friend, Leanne, died a gentle death with the help of hospice (real names
used here with permission). Anita had gradually become increasingly debilitated
over the years, having suffered a mastectomy, several strokes, blindness,
and other physical challenges. At some point, she decided she was ready
to die and did not wish further medical interventions. She also stipulated
verbally and in writing that she did not want to be hospitalized again.
Anita had done everything right in the death-planning department, having
prepared and regularly updated her will and her Advance Directive for
Health Care, and having joined People's Memorial Association (PMA) to
handle the disposition of her body in the simplest and most inexpensive
way. Anita had also completed the necessary legal documents to name Leanne
as her Durable Power of Attorney (DPOA) for finances and health care.
In addition, she had notified her family, her doctor, and the nursing
home (where she lived) of her request not to be put on life support or
subjected to any extreme measures to extend her life.
Despite this thorough preparation, Anita's peaceful death was almost derailed
by the fears of those around her. A week before Anita's death, Leanne
called me. She was upset because she had "caved" in the face
of a distraught nurse and a disrespectful doctor who had pressured Leanne
into hospitalizing Anita despite her written directives.
At first, Leanne asked me to intervene spiritually to figure out what
to do next, but I preferred to visit Anita in person instead. I wanted
to ask Anita directly what she wanted, and I wanted to do it in a way
Leanne could witness herself. Having done this work before with others,
and most recently with my own father before his death, I felt that the
direct approach would be best. Leanne agreed.
We arrived at Virginia Mason a little before ten that night. The nurse
on duty recognized me and asked if I'd been there recently. It turned
out she'd been on duty the night my father was hospitalized there with
a broken neck a few months before (he died June 1st). That particular
nurse had extensive hospice experience, which was welcome support for
my work with Anita.
It took about two hours for me to help Anita communicate her wishes (in
her case, by using the movement of her left leg to say "yes"
to my carefully worded questions). Through this process, Leanne was able
to see for certain that Anita wanted life support removed so she could
die. With an immediate "yes" response from her left leg, Anita
was also able to convey forgiveness when I asked if she'd be willing to
forgive Leanne for hospitalizing her against her will.
When Leanne was satisfied that I'd covered all the bases with Anita, we
asked the nurse to remove life support and begin palliative care to relieve
Anita's pain and ease the dying process. It was sweet solace for Leanne
to see every trace of anger disappear from Anita's face as soon as all
the life support mechanisms were removed.
Before Leanne and I left at midnight, we arranged to have Anita transported
back to her own bed at her nursing home. One week later, on September
27th, Leanne was present when her mother died peacefully that afternoon.
This article was originally published by
Evergreen Monthly (November 2004).
RESOURCES
To receive a do-it-yourself packet of documents
for Durable Power of Attorney and an Advance Directive for Health Care
(formerly known as a Living Will), please call Senior Services of Seattle-King
County at (206) 448-5720.
For information about inexpensive cremation, funerals,
and other end-of-life arrangements, please contact People's Memorial Association
at 1-800-765-0107 or visit www.peoples-memorial.org.
For hospice care information or referrals, please
visit www.hospicepatients.org or contact Bailey-Boushay House in Seattle
at (206) 322-5300 or www.vmmc.org/bailey-boushay.
To learn more about how to communicate with and
care for people in comas or other nonverbal states of consciousness, please
see Amy Mindell's book, Coma: A Healing Journey (www.aamindell.net).
Additional support for end-of-life care can be found in Dr. Ira Byock's
books, Dying Well and The Four Things That Matter Most or
by visiting www.dyingwell.org.
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