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Decision points in facing death: talking, timing, & other touchy subjects
Faculty ForumGail 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 – JuneCare 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 resultsOctober 2004 Presentation of “Anger!” workshop at
Tri-State Hospice Meeting with Dr. Berger2 presentations at Third International Healthcare
Conference, with publication in proceedingsDecember presentation on Intercultural Aspects for
Hospice Employees to ConsiderPresentation 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 decision-making 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
DeathWe can’t avoid it… So
Let’s talk about a “good death”
Death
In the
Sickroom
Munch
Exercise
What is it to die well?
Handout1
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.
Financial
You
Medical Spiritual
Insurers
Family Resources
Medical institutions
Spiritual advisors
Lost income:
Yours, caregiver’s
Friends
Support groups
Lawyer
Government
Legal
PsychologicalSocial
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
FearAnger
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 anxiousFeeling hurtFeeling
embarrassmentFeeling shameFeeling 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-of-life 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-of-life treatment decisions
Lack of understanding about what CPR, IVs, artificial hydration really do. Lack of familiarity with health care systemEducational backgroundDesire to delegate decisions entirely to family. Trust in family members Awareness of hospice, palliative care servicesCultural 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 plansContradictory 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 deathWhy 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 resolutionDeathFuneral plansBurial, cremation plansWillsNaming 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 itselfFace your own understanding and fears of death and dyingIdentify those decisions you need to make
Thanatologically speaking, what’s in your toolbox?
Finding the tools to face deathWhat do I need/want?
Goal/end Resources/
Strategies to achieve goal
Knowledge EOL
Treatments
Legal, financial
Skills Listening
Conversation
Attitudes Values
Beliefs
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/comfortExile/homelandWeeping/shoutingDespair/hopeSuffering/joyStinging death/stingless death
Frustration/fulfillmentSowing/harvestingLabor/restEarthly cities/heavenly cityAloneness/fellow-shipEmptiness/blessed-nessWithering/abiding
LiteratureDylan 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 precepts1. 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 space5. 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 YouAre Your Parents Driving You Crazy?Aging Parents, Ambivalent Baby BoomersElder 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 & Life-threatening Illness
Decision points in facing death: talking, timing, & other touchy subjects