An Annotated Bibliography of Books on End of Life Issues
By Geoff Lister
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an order.
“A
Few Months to Live, Different Paths to Life’s End,” by Jana Staton,
Roger Shuy, and Ira Byock. Georgetown University Press, 2001. ISBN :
0-87840-840-1.
A unique account of the last months of nine people dying in Missoula,
Montana, in 1997. Broken up into sections that isolate important parts of
their dying experiences, it offers brief quotes and stories from the
patients and their families to bring to life what the actual dying
experience is like. Sections include “Communicating about Death and
Dying,” “Family Caregiving Experience,” and “Personal Growth, Meaning, and
Spirituality, among others. A real value of drawing on so many people is
to underline the diversity in how the dying and their families approach
and experience these last few months. This book will be of great interest
to nurses and physicians trying to understand the varieties of ways that
people find strength and meaning in dying.
“The
Good Death, The New American Search to Reshape the End of Life,” by
Marilyn Webb. Bantam Books, 1997. ISBN: 0-553-09555-2. $24.95 HB.
This is a long book, written by someone familiar with the contemporary
movement that surrounds hospice, to help the dying and their caregivers
learn new skills, particularly spiritual skills, to help them grow from
the experience of dying. She starts with the story of a woman’s long fight
with breast cancer, her eventual acceptance of her dying, and the growth
she experienced in dying. This story alone is worth the whole book. She
goes on to tell the recent history of the effort to create the possibility
of a “good death” including the efforts of pioneers such as Elizabeth
Kubler-Ross, but also Stephen Levine, Ram Das, and Rachel Naomi Remen. For
caregivers or health professionals seeking a spiritual framework for
helping the dying, this book will be invaluable. She ends with proposals
for what needs to be changed to allow a good death to be more widely
available.
“The
Tibetan Book of Living and Dying,” by Sogyal Rimpoche. HarperSan
Francisco, 1993. ISBN: 0-06-250834-2 pbk., 0-06-250793-1 cloth. $17 pbk.
This is a book that needs to be digested over a long period of time; it
is too intense to be read through quickly. It offers practical advice on
how to meditate. Complex Buddhist views about the nature of the mind and
of dying are clearly explained. Chapter 11 can almost be read separately
from the rest of the book; it is called “Heart Advice on Helping the
Dying.” The last sentence reads, “There is no greater gift of charity you
can give than helping a person to die well.” The author gives sufficient
guidelines so that anyone who is interested can try out the ancient
Tibetan practices of Phowa and Tonglen to deepen their spiritual strength
in dealing with the death of others and their own death. This book will be
useful to someone seeking a spiritual framework for helping someone else
die; it will be most useful in helping someone with a spiritual bent
prepare for their own death.
“Facing
Death and Finding Hope, A guide to the Emotional and Spiritual Care of the
Dying,” by Christine Longaker. Doubleday, 1997. ISBN: 0-385-48331-7.
$23.95 cloth. Now available in paperback.
This book is written by an American student of Sogyal Rimpoche who has
worked with hospice in California. She also lost her husband to leukemia.
She explains some of the same material in her own words that Sogyal
Rimpoche writes about in the previous book. On pages 69-71 she has an
explanation of a loving kindness meditation that can be practiced by
anyone. She encourages all of us to search for how we can find a meaning
in our lives that makes each day worth living: “What is the most important
thing, and how much time am I giving to it?” This book is more
approachable than Sogyal Rimpoche’s for someone not familiar with Tibetan
Buddhism. It is shorter and more accessible than Rimpoche’s book for
health professionals. For anyone who might dismiss such a book as only
being of help for someone in the field of hospice care, she notes that the
tasks for the dying are really the same as the tasks of the living if they
wish to live fully.
“The
True Work of Dying, A Practical and Compassionate Guide to Easing the Dying
Process,” Jan Selliken Bernard and Miriam Schneider. Avon Books,
1996, ISBN # 0-380-78289-8. paperback $12.
Written by two nurses who worked together first at a free standing
hospice in Oregon, and then formed a business to help others care for
their dying family members. It has two emphases: it focuses on the last
several weeks of life and it emphasizes the spiritual aspects of dying and
of end of life care. It is more a book of help than a book that would help
a researcher in end of life issues. They emphasize how they have seen
healing come out of the dying process. A very hopeful and helpful book. A
paragraph in a section called, “The Meaning of Angels” gives the flavor of
their writing: “The experience of spiritual or other beings that only the
dying person can see is a familiar theme. The presence may be a relative
or friend who has died….For many, the most accurate description of these
visits is an angelic presence. We believe these visits begin to prepare
the dying one and those who care for him or her. The death moment is
somehow fulfilled with the coming and goings of these heavenly visitors.”
“A
Midwife Through the Dying Process, Stories of Healing & Hard Choices at the
End of Life,” by Timothy E. Quill, M.D. The Johns Hopkins University
Press, 1996. ISBN #: 0-8018-5516-0.
This book is written with a rare honesty of the agony that doctors face
in their roles as midwives to their dying patients. Here is such a
passage: “I tried to keep myself, as well as Cynthia and her family,
focused on the present and not on the future. “How long do I have? One of
the dreaded questions asked of doctors, both by patients and by their
families (as we move just out of hearing range). “I don’t know.” “But what
do you think?” I try to be honest, while always leaving room for the
unexpected. “Probably not too long—a few weeks, maybe a month or two,
though there are exceptions in either direction.” “How bad do you think it
will get?” “It is hard to know, but we will work together to find
solutions, no matter what happens.” This book is written around the
stories of nine of Dr. Quill’s dying patients. The commentary about the
stories is most directly addressed to fellow doctors, but will be helpful
to nurses and other people helping the dying who may be more tolerant
towards physicians thanks to his rare ability to clarify the struggles
that doctors face when their patients are dying.
“Final
Gifts, “ by Maggie Callanan and Patricia Kelle7. Walker and Company,
1992, ISBN # 0-8027-2692-5.
Written by two nurses with long hospice experience in the Washington,
D.C. area, this book offers a theoretical framework to help family and
caregivers better understand messages that can occur within the confused
ramblings of the dying. They call their theory “Near Death Awareness”. Two
types of messages appear—ones indicating how the person is experiencing
they dying experience, such as seeing or communicating with now dead loved
ones, and ones that indicate unfinished business that they need to
complete before dying. The authors illustrate their theory with many
stories of the patients they worked with. I was struck by how many of the
stories concern the experience of relatively young people dying, where the
dying may well need unusual help. I personally have not seen much of the
kind of communication they discuss, but I don’t doubt the reality of what
they have seen or its importance when it does occur. The authors have
suggestions on how to help the dying better express their needs and on how
the caregivers can better understand those needs. A bonus is that the book
has an excellent chapter on the history and philosophy of the hospice
movement.
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