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 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 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. Financial You Medical Spiritual Insurers Family Resources Medical institutions Spiritual advisors Lost income: Yours, caregiver’s Friends Support groups Lawyer Government Legal Psychological Social

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-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 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/endResources/ Strategies to achieve goal KnowledgeEOL Treatments Legal, financial SkillsListening Conversation AttitudesValues 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?

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/fellow- ship Emptiness/blessed- ness 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 & Life- threatening Illness

Decision points in facing death : talking, timing, & other touchy subjects