Decision points in facing death:
talking, timing, & other touchy
subjects
Faculty Forum
Gail Henson
Sabbatical Presentation
Objectives
Review of Hospice experience
Name your concept of dying well
Determine tough decision points
Determine touchy conversations
Discussing timing of touchy, tough
talks
Developing tools for the task of
dealing with death
Sabbatical at Hospice Institute
February – June
Care for the Dying Day—workshop
on “Care for the Dying Day: Difficult
Conversations” March 2004
“Anger! Tools for Hospice
Employees” —in-house quality
initiative for 550 employees with Dr.
Joy Berger
 18 workshops
 From April through May
 Louisville, Southern Indiana,
Shelbyville, Elizabethtown
ANGER
!
Sabbatical at Hospice
Competency for Hospice Social
Workers
“Helping patients and Families with
End-of-Life Decisions” June 2004
Sabbatical results
October 2004 Presentation of “Anger!” workshop at
Tri-State Hospice Meeting with Dr. Berger
2 presentations at Third International Healthcare
Conference, with publication in proceedings
December presentation on Intercultural Aspects for
Hospice Employees to Consider
Presentation in January 2004 at Hawaii International
Conference on the Humanities: “Using the Arts to
talk about Death and Dying”
2 presentations accepted for the National HPCO
Clinical Conference in Atlanta April 2005
Scheduled presenter for March 2005 Care for the
Dying Day of Hospice on “There is a time to
discuss quality
of life versus quantity”
The mere thought of death
Makes patient and
family decisionmaking tough for all
concerned.
Just makes you want
to……..sometimes.
Continuing issues emerge
What is it to die well?
Managing conversations about the end of
life--one’s own or that of a loved one.
How do we weigh the quality of life versus
the quantity of life?
When is it time to have those
conversations?
What factors may affect such discussions
in a multicultural setting?
What can help with those conversations?
Momento
mori
Remember
Death
We can’t avoid
it… So
Let’s talk
about a
“good
death”
Death
In the
Sickroom
Munch
Exercise
What is it to die well?
Handout
1
What’s the right time to face death?
Today—to make
plans, to make
peace
When you have the
cognitive capacity
to do so
Whose death is it
anyway?
Typical decision points
Point of diagnosis
Point of entry/admission into a healthcare
setting
Treatments
At the point of medical futility
Curative care vs. palliative care—there is a
time--Last things—enacting living will requests
What are the tough decision points?
Medical treatment: risks vs. benefits, costs
Medical futility
Guardianship
Legal issues: wills, trusts, guardianship,
Durable Power of Attorney, Healthcare
surrogates
Final details—funeral services, expenses,
Value of life—is there life after death? More
lives after death? Nothing after death?
Kinds of death—
Expected death
Unexpected, sudden death
Suicide
Homicide
Disaster deaths
High grief versus low grief (intense
emotional physical reactions; low grief—
less devastating)
Death of child
Making Decisions about the end-of-life is a complex
web of people, decisions, and issues.
Medical
Medical
institutions
Spiritual
Insurers
You
Family
Resources
Spiritual
advisors
Psychological
Social
Financial
Legal
Friends
Lost income:
Lawyer
Yours,
caregiver’s
Government
Support
groups
Timing is tough-You don’t know how to begin—
You’re surprised, confused, upset at
what has happened--You’re anxious about what you might
hear or see—
You’re anxious about death itself--You’re afraid your family might get
mad at you! For example----
So why is it so hard to have tough
conversations?
Roles that have
been played such
as….
Boundaries long
established
Feeling it would be
disrespectful
Fear
Anger
Embarrassment
Not knowing how
to begin
Geographic
distance
Dislike or disgust
Not having the
emotional energy
to do this
Not motivated
Personality clashes
A major reason why we don’t face
death…………
Denial
Talking about death is touchy—we
get angry—or make others angry
Feeling of being
controlled
Feeling anxious
Feeling hurt
Feeling
embarrassment
Feeling shame
Feeling humiliated
Response to a
threat
Feeling of being
attacked
Feeling of being
victimized
Feeling of being
abandoned
Feeling hurt
Why talk about death?
Why talk about difficult topics concerning
the end-of-life?
Makes known YOUR desires about end-oflife treatment, funeral, disposition of estate.
Frees your family members from potential
guilt— talking about issues NOW gives
them permission to act on YOUR desires.
Gives you control: Whose life is it?
Whose death is it?
Autonomy is a fundamental value
Tough barriers that impede end-oflife treatment decisions
Lack of understanding about what CPR,
IVs, artificial hydration really do.
Lack of familiarity with health care system
Educational background
Desire to delegate decisions entirely to
family. Trust in family members
Awareness of hospice, palliative care
services
Cultural diversity (Chinese
American=disrespect to discuss EOL)
Haley, “Family issues…” 2002
Barriers & challenges may arise at
any point as death is faced
Motivations, goals and plans
Contradictory goals when needs conflict
Cognitive skills of dying person may be
inadequate
Goals change if there’s a history of failure
From Transcultural
Communication and Health
Care Practice: RCN.
Learn the values that cause conflict
between majority, minority culture,
healthcare providers/staff
Future orientation
Informality
Direct, open,
honest
Practical,
efficiency
Materialism
Past, present
orientation
Formality
Indirect, “face,”
ritual
Idealism
Spiritualism,
detachment
From Samovar & Porter
Communication between Cultures, 5th
Ed
Conversations –
Religious & philosophical
Religious concerns
about death
Why is life so fragile?
Why is everything
living transient?
How do I deal with
suffering? How can I
deal with pain or
discomfort as I die?
Do I fight death or do I
embrace it?
Why am I suffering?
What is quality of life?
What is the meaning
of my life?
What is my legacy?
What is a good death?
What will the hour of
my death be like?
Can I prepare for
death?
Does anyone care
about my death?
Does my death affect
anyone?
What loose ends need
to be tied up before I
die?
Spiritual issues to address
What will happen to
my body after death?
Will I continue
suffering? Will I be
reborn into a new
existence or into a
cosmic nothingness?
How do I go into the
next stage? Is it dark
or light? Is there a life
after this?
What is heaven (or
hell) like?
Will there be angels or
demons?
Will I see God (or a
devil)?
Will there be a
judgment?
Will there be people,
places, or animals I
know?
Difficult conversations: end of life
Family relationships that need
resolution
Death
Funeral plans
Burial, cremation plans
Wills
Naming an executor
What to do with possessions after
death
Reaching out while facing death
Find out what you
need to know
about the dying
process itself
Face your own
understanding and
fears of death and
dying
Identify those
decisions you need
to make
Thanatologically speaking, what’s in
your toolbox?
Finding the tools to face death
What do I
need/want?
Goal/end
Knowledge
EOL
Treatments
Legal, financial
Listening
Conversation
Values
Beliefs
Skills
Attitudes
Resources/
Strategies to
achieve goal
Knowledge
Disease progression
Treatment options
Comprehension of artificial hydration,
nutrition, CPR, ventilators, dialysis
Prognosis
Physiology of dying
Legal and financial matters
Skills
Knowing how to access care
Knowing how to give treatments
Knowing how to communicate with
health care professionals
Knowing how to advocate for one’s
loved one or one’s own interests
Knowing how to talk to family/friends
Knowing how to listen
Attitudes
Naming one’s attitude, beliefs, hopes,
and fears about dying
Tying up loose ends with the person
dying
Learning to accommodate diverse
perspectives on the meaning of
illness, suffering, and death
Use of the arts to communicate
about death
Clint Brown “Confronting the AIDS Crisis”
Use of the arts to communicate
about death
The arts can a way for the dying to
understand their own death.
Creating art can help the dying and
their family come to peace, closure, or
understanding
Creating art may summarize one’s life
experiences and be a way to make
gifts for loved ones
Using the arts to face death
May provide a significant means of
nonverbal communication, offering love
and forgiveness
The arts reawaken the senses often
ignored during long illnesses. They
address what is possible rather than what
is lost. They bring beauty, joy, and every
form of expression into a time that we often
assume to be unbearably painful.
C Regina Kelley, “Transformations: Visual arts and Hospice Care” [in
Sandra Bertman’s Grief and the Healing Arts]
Confronting fears……..
. Brueghel’s Triumph of Hell
Questioning our legacy—who
cares?
Brueghel The Fall of Icarus
Music is a tool for confronting death
1523 Out of the Depths Aus Tiefer
1529 A Mighty Fortress is our God Ein
Fest burg
1601 O Sacred head, now wounded,
12th century; Passion chorale
Johannes Brahms German Requiem
Handel’s Messiah
Precious Lord, take my hand
When the saints go marching in
Themes of Music
Grief/comfort
Exile/homeland
Weeping/shouting
Despair/hope
Suffering/joy
Stinging
death/stingless
death
Frustration/fulfillment
Sowing/harvesting
Labor/rest
Earthly
cities/heavenly city
Aloneness/fellowship
Emptiness/blessedness
Withering/abiding
Literature
Dylan Thomas “Do Not Go Gentle into That
Good Night”
Tolstoy “Death of Ivan Ilyich”
Alice Walker “Goodnight, Willie Lee, I’ll See
You in the Morning”
Emily Dickinson, “Because I could not stop
for Death”
John Milton “Methought I saw my late
espoused saint”
John Donne, “Death, be not proud”
Tools from faith, support groups
Knowing the tenets of one’s faith
tradition, if that applies
Borrowing practices from faith
traditions that help—meditation,
rituals, prayer
Zen Hospice-5 precepts
1. Welcome everything; push away nothing—
fearless receptivity;
2. Bring your whole self to the experience—
exploration of own suffering helps us travel with
another—can’t travel in territory with another that
we haven’t traveled itself.
3. Don’t wait (waiting, full of expectations, miss
what this moment has to offer; miss opportunities
before us)
4. Find a place of rest in the middle of things
we can find that space
5. Cultivate “don’t know” mind. Open, receptive
mind—not knowing is most intimate—when we
don’t know, we must stay close to the experience.
Receptive, flexible, observe changing needs.
Frank Ostaseski Being a Compassionate Companion Zen
Hospice Project, San Francisco, CA
Tools of the thanatology trade
Suggestions for Reading
Final Gifts***
I’ll Take Care of You
Are Your Parents
Driving You Crazy?
Aging Parents,
Ambivalent Baby
Boomers
Elder Rage: How to
Survive Caring for
Your Aging Parents
Family Ties that Bind
Boundaries. When to say
YES;When to Say No to take
control of your life.
Workbook: Boundaries
Face to Face
Crucial Conversations
Feeling Good
Handbook for Mortals
More reading
The Complete
Bedside Companion:
A No-Nonsense
Guide to Caring for
the Seriously Ill
Handbook for
Mortals
Improving Care for
the End of Life
Meetings at the Edge
Families & Lifethreatening Illness
Decision points in facing death:
talking, timing, & other touchy
subjects