Introduction and Suggestions on
How to Use This Guide
This discussion guide was developed so that Dr. Byock’s book,
Dying Well could be
used for study by book clubs and classes. Each
session is designed for 1-1/2 hours of discussion.
Participants should read the suggested chapters of Dr. Byock’s
book for each session prior to each session. The
questions brought forth in this guide are by no means exhaustive and
time should be allotted at the end of each session to discuss any other
issues that caused the participants pause as they read the material for
each session. This
guide is only a jumping off point for, hopefully, valuable and
meaningful discussion on the subject of “Dying Well” and what that means
for each individual. It
has been my hope that the sharing of views and concerns each time you
meet, might dispel some myths surrounding death and dying and cause the
participants to open their minds to the possibilities that lie ahead for
all of us.
For there is one certainty that is universal for all of humanity,
and all of creation. That
is, that eventually we all will die. But
how we go about dying and how we attend to the dying, is still an
Deb Hayden, August 2000
ONE - “Teaching About Living, Teaching About Dying”
Is there anything about Dr. Byock’s
personal story that sounds familiar to you?
Take time to tell personal stories of
your own that taught you about dying. What were the hard lessons that
your experience taught you?
Did your experience change your views
about living with dying?
If you could do things differently, what
things would you have changed?
What did you do that you were glad that
Return to the Top
“Questioning Assumptions and Dawning Awareness: My Journey”
It might be helpful for this session to
have an attorney or social worker speak briefly to the class about
Living Wills, Advanced Directives and the Durable Power of Attorney for
Health Care. Have copies
available for anyone who would like copies.
In the second
paragraph of this chapter, Dr. Byock states: “the time of my father’s
dying, especially the last months and weeks, pervaded my thoughts and
permeated my dreams. The
memories were full of compelling images and poignant vignettes that
connected me with a deep, aching sadness. Something about that time was
also undeniably precious.”(p.25) Have you had an experience similar to
his? Share your
experiences. What makes
them so poignant? What makes these images and memories precious?
As Dr. Byock recalled his experience
with death on a hospital unit, he asked the question, “I wondered what
it was permissible to die from.”(p. 27) What do you think he is
your experience, are there more acceptable reasons for dying compared
to others? Are there reasons for death that you are more comfortable
with than others?
Have you discussed your final wishes to
those who are close to you?
If not, why?
What does the
expression "dying well" mean to you? What would be a "good death" for
you when that time comes?
to the Top
CHAPTER THREE -
“Learning to Die Well: Anne-Marie Wilson”
Dr. Byock states in
this chapter: "Medical training is not very helpful for understanding
the personal, as opposed to the medical, nature of dying." (p. 35)
What do you think he
means by a personal nature of dying verses a medical nature of dying?
Has it been your
experience that his statement is true regarding medical training? Why
or why not?
What feelings did you
have as you read about Anne-Marie's approach and experience with
How was the human
dimension of dying made available to Anne-Marie?
CHAPTER FOUR -
"Suffering and Beyond: Douglas Kennedy"
Dr. Byock believes
that two kinds of suffering are universally present in the dying,
physical suffering and emotional/psychological suffering. Discuss your
own experiences with this.
What are your beliefs
about suffering? Where do they come from?
Dr. Byock states in
this chapter that "Pain and privation can be endured if it is for a
purpose." (p. 83) Do you agree? Why or why not?
What was your
reaction to Dr. Byock admitting Douglas to a psychiatric unit?
CHAPTER FIVE -
"Finding Dignity Amid Disease and Disintegration: Wallace Burke, Julia
Rosauer, Hap Vischer"
Discuss your views on
what gives our life dignity?
How does Dr. Byock
define dignity? Do you agree with his definition? Why or why not?
Talk about how do you
think you would feel if you were completely dependent on the care of
Discuss your reaction
to Wallace's decision to stop eating? Would you do the same thing if
you were in his situation?
CHAPTER SIX - "The Hardest Decision and the
Greatest Opportunities: Janelle Haldeman"
Have you had the
experience of being able to reconcile with someone before they died?
What was that like for you and how did you know the time was right to
Have you ever been in
the position of asking yourself the question "Did I do the right
thing?" following the death of someone who you were involved in
decisions regarding their care? What was your answer? Was there
anything you regretted? What were you most at peace with?
Do you agree with Dr.
Byock's assessment that Janelle's body was "searching for a way to
die"? (p. 135) Have you seen this before in those that you cared about
who were dying?
How did you feel when
it was decided to cease all food and hydration for Janelle? Have you
had to make this decision for someone that you loved?
What was that like?
CHAPTERS SEVEN & EIGHT -
"Writing a Personal Script for Dying: Steve Morris" & "Accepting the
Gift of Dependence and the Burden of Care: Jake Edwards"
Have written on
newsprint or board before the session the "Five Things of Relationship
Completion: "I forgive you"; "Forgive me"; "Thank you"; "I love you";
How difficult would
it be for you to recite the "five things of relationship completion"
with someone that you love who is dying? What would prevent you from
doing so? (p. 140)
Have you had an
opportunity to do this? Share your experience with the class if you
feel comfortable doing so.
Dr. Byock states in
Chapter Seven: "One key to living well lies in expressing the essence
of 'the five things' in our daily interactions with those we love."
(p. 158) He seems to be suggesting that we don't have to wait until
someone is dying to go about the business of "relationship
completion". Have the class write down on a piece of paper the
following: A person or persons they need to forgive. A person or
persons from which they need to ask for forgiveness. A person or
persons to which they need to say "thank you". A person or persons to
which they need to say "I love you." Someone that they might know who
is dying that they need to say all of the above as well as "Goodbye".
Why do you think it
might be important to those left behind to be able to feel that their
relationship to the person who has died is completed before they died?
Do you have a
relationship that you were unable to complete before they died? What
has that been like for you?
Talk about possible
ways to complete a relationship even though the person has died.
CHAPTERS NINE & TEN
- "Growing with Tragedy: Michael Merseal" & "Facing Unbearable
Pain, Unspeakable Losses: Terry Matthews"
Once again, in the
story of Michael, we are faced with the decision to cease food and
hydration, except this time it is with a small child. Does this fact
make a difference in how you feel about the issue of withholding food
and hydration from a dying person? Why or why not?
In both the story of
Michael and the story of Terry decisions were made to administer
enough sedation to bring a state of unconsciousness and possibly
hasten death. How do you feel about this?
Have you been faced
with the same or similar decisions? Share your experiences.
Once the IV sedation
was started on Terry and her pain ceased, causing her to fall into a
deep sleep, Terry's Aunt Clarise and her sister-in-law, Candy bathed
and shampooed her, gave her a pedicure and dressed her in a T-shirt
that they felt she'd like to be seen in. Discuss your reactions to
In describing Terry's
dying, Dr. Byock stated that "In her dying, Terry served her family."
(p. 213) Discuss your understanding of this statement.
CHAPTER ELEVEN - "Letting Go, Growing On:
In response to Dr.
Byock's inquiry regarding Mo's understanding of the time she had left,
Mo responded: "'I'm a bit disappointed that I'm still alive or not
sicker...When I found out about this astrocytoma, I was glad it was
this great big tumor rather than some dinky little polyp that was
going to get me.'" (p. 224) What was your reaction to Mo's statement?
Did it make you uncomfortable or did you understand?
If you were Mo's
friend and she made the above statement to you, what would be your
response to her?
Discuss your reaction
to Dr. Byock telling Mo that if her symptoms began to affect the
quality of her life, she could choose to stop the medication that was
controlling the swelling of the tumor, thereby hastening her death?
Mo's children seemed
to be almost pragmatic in their reaction to Mo's dying and to her. How
did you feel about this?
How do you feel about
Dr. Byock's suggestion to Mo that she needed to allow her children to
care for her for their own sakes? Discuss your reactions.
Talk with each other
about your understanding of how Mo experienced "Letting go, Growing
on" in her dying.
SESSIONS ELEVEN & TWELVE
CHAPTER TWELVE - "Getting There From Here:
Social and Cultural Dimensions"
Where have your
beliefs and reactions around the issue of dying come from?
It has been said that
in this postmodern age we seem to view death as an option not a
certainty. Do you think this is a true statement? Why or why not?
Dr. Byock writes in
Chapter Twelve: "To be terminally ill or elderly in America today is
to be reminded frequently that you are a drain on the nation's
resources." (p. 242) In your experience, do you believe that this
statement is true? Why or why not?
Discuss the following
statement of belief by Dr. Byock: "I believe that the root cause
underlying the mistreatment and needless misery of the dying is that
America, as a culture, has no positive vision and no sense of
direction with regard to life's end." (p. 244)
Do you believe as Dr.
Byock that we mistreat and cause "needless misery" on the dying? Why
or why not?
What can we do to
make it better?
Have your views,
beliefs and ideas regarding dying changed as a result of reading this
book and the discussion of it? How?
If you were dying at
this moment, how comforting would it be to hear the following words of
promise as stated by Dr. Byock: "We will keep you warm and we will
keep you dry. We will keep you clean. We will help you with
elimination, with your bowels and your bladder function. We will
always offer you food and fluid. We will be with you. We will bear
witness to your pain and your sorrows, your disappointments and your
triumphs; we will listen to the stories of your life and will remember
the story of your passing." (p. 247)