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