Michael E. Holtby, LCSW, BCD
Fear of Dying
Originally published in Colorado's AIDS Newsletter, Resolute! , June 1995
Do not reproduce without permission of the author
I don't mind dying. I just don't want to be there when it happens!
The fear most often expressed about having HIV is the process of becoming
sick and dying. This is best expressed in the writing of a client anticipating
his HIV test being positive, after going untested for three years:
"Probably my greatest fear is of being very, very sick and dying. I've
never broken a bone or even had a stitch. I know I don't handle pain well,
emotionally or physically. I fear that I'll be alone because I've pushed my past
lovers away because of my own addictions and fear of intimacy. I'll be alone and
suffering and scared and slowly dying; painfully, and in the most horrid way
possible, probably going blind first. I've pictured a very horrible scenario
each time, sometimes an early suicide so that I won't have to face all of the
confrontations that I have rehearsed in my mind in the middle of the
For this article I got together with Richard Baer, RN, MS who is the
Coordinator of AIDS Services for Hospice of Metro Denver. Richard is a
phenomenal man who when I first heard him present his experiences, got the
feedback from a psychologist in the audience, "Your love is palpable. I would
want you there if I was dying."
Richard and I agreed that those of us who have witnessed the deaths of many
PWA's have the personal experience of being less fearful of dying as a result.
It is a natural process with a beautifully profound side. I made the observation
that before this epidemic I believed I wanted to go suddenly of a heart attack
in my sleep. However, since sharing the experience with a number of PWA's I now
believe I want some time to anticipate my death and say goodbye to those close
to me. I have come full circle to wanting a conscious death. Unlike Woody Allen,
I want to be there! Richard enthusiastically agreed.
In my last column I quoted Julian Rush, the Coordinator of the Colorado AIDS
Project as saying, "We cannot always guarantee a death that is pain free and
with dignity." Richard took issue with his from the point of view of good
hospice care. Richard's experience has been that in 95% of the cases pain can be
controlled and symptoms like diarrhea can be managed. "Its not always blissful
and peaceful, but always workable," Richard added. I made the observation that
its not physical pain that is the problem, but emotional suffering. And it is
fear that causes difficult dying processes. Richard added that the emotional
task of hospice care is helping people reframe what is happening from "giving
up" to "letting go". Richard went on to say, "If things can be normalized
without the fear of dying, and without pain and discomfort; they can concentrate
USING THE TIME LEFT
One of the first clients I was with when he became sick was bedridden for
three months before he died. On a visit one day when it was gloomy and raining
out, I asked him if he still wanted to be here. "Oh yes!," he replied. "Why?" I
pressed. Jim said it was because of the quality time he was spending with
friends. I had known him for five years, and was amazed that at his funeral
there were over a hundred people there. Besides myself and his family, the rest
had all gotten to know Jim since he was HIV+. Prior to that time his damaged
self-image had prevented him from pursuing and sustaining friendships. When he
first came to see me he was suicidal over depression and isolation. This was
before the HIV test was available, and he had no idea he had AIDS. As I often
see with PWA's, Jim got less depressed and suicidal the sicker he
became. His neurotic concerns about himself dropped away, and he became a warm,
open individual with a wry wit and an increasingly outgoing personality.
Richard Baer tells a story of a man I'll call Bill who reconciled a twenty
year estrangement with his father in the last days of his life. His father was
the good ole boy type who showed up wearing his Knights of Columbus baseball
cap, and his elk hunter belt buckle. After staying a few days in a motel, Bill's
father moved into Bill's house and became his full-time caretaker for the last
three weeks of his life. Richard remarked that it was remarkable to watch the
two of them fall in love with each other. They were able to drop their
differences and resentments over the past, and bond as father and son. Richard
still recalls Bill's father lifting Bill from the bed to the couch for a change
in scenery. He also recalls driving away from Bill's house after he died,
hearing Elton John's song on the album, The One: "I guess I misjudged love
between a father and a son." Bill's father went back to Idaho, and now does
hospice volunteer work with PWA's.
HOW WE DIE
I have found a lot of people imagine their death to be one of struggle;
possibly suffocating, choking or the sensation of strangling. For this reason
they consider self deliverance or assisted suicide as a way to die more
peacefully by going to sleep. As I indicated in the last article, suicide can go
awry, and does; one study suggested in 50% of the cases. Richard Baer believes
that with proper pain and symptom control, as well as emotional and spiritual
support there would be few who would choose suicide. I would add, that if people
are well informed of the dying process, it would make it seem much less scary.
The medical reasons people die of AIDS varies with their various
opportunistic infections, however the following might be considered a typical
Stan lived longer than any of us thought he would. He wasted away to a wisp
of his former self, but he remained mentally sharp and quick with a sense of
humor. When he stopped eating and drinking, his nausea
ceased and actually he experienced a decline in his level of pain. He
frequently sucked on a small sponge at the end of a straw to keep his mouth
One day when I arrived he told me he had already died. He went on to tell of
two friends who had died of AIDS before him who had come to get him. He
followed, but not far, still reluctant to leave. He waved at the foot of the
bed, saying "And they're still waiting for me." It would be quite easy to
dismiss this as confusion. However, it is very common for people close to death
to experience the presence of loved ones who have gone before them.
We will never know until we get there, but if we can extrapolate from the
reports and observations of those who are dying. You can expect to experience a
consciousness similar to a dream state. Even though your body may be restless,
even though your breathing may become irregular and then long periods between
breaths; you are likely to be detached like when you've used gas in the
dentist's chair. Your body temperature is likely to go all over the map -- hot
to cold, but you are preparing to leave that worn out shell behind. Ram Das
likens it to squeezing out of a tight shoe.
You are most likely preoccupied with those on the "other side" who have come
to get you and guide you to the next plane. Many people get a glimpse of this
other place and in every instance describe it as "peaceful and beautiful". There
are the experiences of those who have died and been revived who talk of the
bright light, etc. This has been so popularized it has become a New Age cliche.
However, these experiences parallel those of the dying, and are strikingly
similar despite cultural and historical differences. For Richard Baer and other
hospice workers it is very universally accepted that life does not end, but
rather people leave their bodies and their existence goes on in another form.
What exactly happens after we die -- whether its Heaven or another life, is less
relevant than the fact that in some form our consciousness continues. John
Lennon characterized it as "getting out of one car and into another." Our
existence goes on.
"Death is only a horizon; and a horizon is nothing save the limit of our sight."
Rossiter Worthington Raymond
Callanan, Maggie and Kelly, Patricia. Final Gifts: Understanding the
Special Awareness, Needs, and Communications of the Dying. N.Y.: Bantam
Kubler-Ross, Elisabeth, ed. Death: The Final Stage of Growth. New
Jersey: Prentice-Hall, 1975.
Levine, Stephen. Who Dies? An Investigation into Conscious Living and
Conscious Dying. NY: Doubleday, 1982.
Moody, Raymond. Life After Life. NY: Bantam Books, 1975.
Osis, Karlis and Haraldsson, Erlendur. At the Hour of Death. NY:
Avon Pubs., 1977.
Ring, Kenneth. Heading Toward Omega. NY: William Morrow, 1984.
Last messed with November 15, 2001
Copyright(c) 2001 Michael E. Holtby, LCSW. All rights reserved.