Rev. Dr. Cherie Wallis Jackson, BCCC,CFHPC

Rev. Janet Ihne, M.Div.

TOUGH QUESTIONS, HONEST ANSWERS

Presentation PurposeTo examine Cultural and Faith Based Decisions at

End of Life including:Religion/Spirituality: Facilitating and Complicating

FactorsBreaking Bad News: When Family says, “Don’t Tell.”Facility PlacementPerception of HospiceArtificial NutritionDNRDisposition of RemainsUse of Opiates and Withdrawal of Medication

PLEASE HOLD QUESTIONS UNTIL THE END

Introduction: End of Life Issues Regarding Religion/Spirituality/Cultural

Define Religion and SpiritualityReligion- Embraces Several DimensionsExperiential

Ritualistic

Consequential

Intellectual

Religion/SpiritualitySpirituality:Has many definitionsSpirituality gives our lives context May or may not be connected to a specific

belief system Connection with self/others, value system,

meaningReligious observance, prayer, meditation

or a belief in a higher power Nature, art, music, or a secular community

Facilitating Factors

Finding the Meaning in the Illness

A Sense of a Larger ConnectionFaith Practices Enhance HealthFaith Influences Sense of Control and Places in the Hands of Higher Power

Complicating Factors

Fear of God’s judgmentConflicts with medical practice

Moral guilt as a penalty for sin

Lack of belief

How to Break Bad News to the Patient

InformationLack of formal training Want to knowStrengthens patient/medical team relationships

CollaborationPlan and cope

6-Step Protocol (Adapted from Robert Buckman)

1. Getting started2. What does the patient know?3. How much does the patient want to

know?4. Sharing the information5. Responding to patient, family

feelings6. Planning and follow-up

SPIKES- another way to define the 6 StepsResearch by Buckman adapted by Kathleen Ciccone

S= settingP= perceivesI = invitation K= knowledgeE= emphasizing/exploring emotions

S= Strategy and Summary.

Step 1- Setting

Physical ContextPrivacyFamily membersBody languageListening skills

Step 2-Perception- Before you tell, ask.Use different ways of asking what the

family perceives.Ask open-ended questions, then correct misconceptions.

Assess vocabulary and comprehension of medical terms.

Note if denial is present. Reschedule if you are not prepared to answer tough questions.

Step 3-InvitationThere are different ways of asking how much a patient or family member wants to know.Requesting information Denying information Choice of informationHandling information

Step 3-When the Family says “Don’t tell.”What Happens When the Family Does Not Want

to Inform the Patient they are on Hospice?Advance Preparation:

Initial Assessment by admitting RN, RNCM, Social Worker, Chaplain

What does the patient know?How does the patient handle information?Reasons to inform (right to know)Legal obligation to obtain Informed Consent from

the patient.Foster family cooperationHonesty promotes trustProvides an opportunity to say goodbye

Step 3-When the Family says “Don’t tell.”

Ask the Family:Why not tell?What fears do you have?What are your previous experiences when bad

news was delivered?Is there a personal, cultural, or religious context?

Talk to the Patient together.Again, most patients know that they are dyingMost patients handle the news better than

expectedIra Byock, “The Four Things That Matter Most.”

Step 4- Giving the Knowledge

Say the information, then stop.Avoid monologue, promote dialogueAvoid medical jargonPause frequently, giving information in small

piecesCheck for understandingUse silence, and body languageDon’t minimize the severityAvoid vagueness and confusionDiscuss the implications of “I’m sorry”

Step 5- Acknowledging EmotionsEmotional Response

Tears, anger, sadness, love, anxiety, relief, other

Cognitive ResponseDenial, blame, guilt, disbelief, fear, loss, shame, intellectualization

Basic psychophysiological responseFight-flight

Step 5- Responding to Feelings

Be prepared for: Outburst of strong emotionA broad range of emotions

Give time to reactListen quietly and attentivelyEncourage descriptions of feelingsUse non-verbal communication

Step 6- Strategy and SummaryPlan for the next steps

Additional information: providing information of the dying process

Treat symptomsDiscuss potential sources of support

Before leaving, assess:The safety of the patientCaregiving support at home or facility

Repeat news at future visits as requested

Step 6- When Language is a BarrierUse a skilled translator

Someone who is familiar with medical terminology

Comfortable translating bad newsConsider telephone translation services

Avoid family as primary translatorsConfuses family membersMay not know how to translate medical

conceptsRevise the news to protect the patientSupplement the translation

Speak directly to the patient

Step 6- Communicating Prognosis

Inquire about reasons for asking:“What are you expecting to happen?”How specific do you want me to be?”“What experiences have you had

with:”Others with the same illness?Others who have died?

Placement in a Skilled Nursing FacilityBenefits of Placement

24 hour careSafe environmentDaily nutritious mealsRehabilitation servicesMost homes are not designed to facilitate

wheelchairs/walkersDescribe Pitfalls Based on Faith Practices

Caregivers may be unfamiliar with the patients faith tradition and how these beliefs inform decisions about treatment and care

In many faiths and cultures, some families object to placing their loved one in a facility. This causes anxiety and disrupts care within the facility

View of Hospice Based on Faith Tradition/ Culture

African Americans: A little over half are wary of health services The younger generation understands they can’t do it all and are

more accepting of medical intervention It is important to glorify the importance of their family connection.

It all goes back to their faith. Faith doesn’t have a culture. Education is the key to building trust and weighing the pros and

cons of end-of-life decision making Native Americans:

Approve of Hospice as long as spirituality needs are met Allowed to partake in traditional Native American rituals

Hispanics: They want to stay alive as long as possible through the use of

aggressive treatment, leading to revocations and readmissions “Blood Hands” Low users of hospice- unfamiliar with the services. Culturally

inappropriate as they like to care for their own

View of Hospice Based on Faith Tradition/ Culture

Asians:Second fastest growing minority population

in the U.S. with a lower utilization rate of hospice due to cultural barriers and inadequate health insurance

In the Asian family, death is not discussed because there is a common superstition that talking about death will hasten one’s death.

East Indian:Palliative and hospice care are aligned with

Hindu valuesHindu’s believe that death should not be

prolonged or soughtHindu’s prefer to die at home surrounded by

family

View of Hospice Based on Faith Tradition/Culture

Judaism: Concerned whether the whole direction of the hospice care is legitimate Uneasiness with regard to hospice’s perceived refusal to actively fight

death and to surrender to fate An observant Jewish family will consult with their rabbi

Islam: (means “submission to the will of God”) Duty of the mother and/or children to take care of the weak and disabled Important holidays and traditions, and diet and feedings may bring up

issues in healthcare Caregivers must be the same gender as the patient

Buddhist: Concept of Right Intention Karmic world Use of painkillers are okay if they know this may cause death but the

intention is to ease pain

Artificial NutritionExplain Benefits:

Prolongs lifePromoting patient comfort by

preventing skin breakdown, metabolic abnormalities and dehydration

Facilitates healing of woundsExplain Negative Impact:

Aspiration, which can lead to pneumonia

When actively dying, does more harm than good

Need to make decision to withdraw feeding

Artificial Nutrition and Hydration (ANH): Just the Facts

These facts come from the American Hospice Foundation:Like many medical interventions, all forms of

ANH:Uncomfortable/painful procedures Side effects and potential complicationsIndications that ANH may be more

beneficial than harmful (in patients who will likely recover from a serious illness)

Contraindications that ANH is more harmful than beneficial (in patients with dementia)

Artificial Nutrition and HydrationDefined: ANH is a treatment intervention that

delivers fluids and/or nutrition by means other than a person taking something by mouth and swallowing it

Enteral: Nasogastric-Nutrition and/or fluids are delivered through a tube placed in the gastrointestinal tract. The tube may be passed through the nose and throat and ultimately to the stomach

Parenteral: Fluids are delivered via a catheter placed in a vein of the body

Gastrostomy: The tube is surgically placed directly into the stomach or small intestine (also known as a “peg tube”)

Artificial Nutrition and Hydration: Myths

Myth: ANH prevents aspiration pneumonia

Myth: ANH speeds wound healingMyth: A dying person who has

become dehydrated due to lack of fluids experiences extreme thirst, pain, and distress

Myth: A person with advanced disease or terminal illness who stops eating will “starve to death” painfully.

Do Not Resuscitate (DNR)Benefits of a DNR

No chance of brain damage if CPR was not administered

May allow patient to pass away peacefully

Burdens of CPR

A frail patient’s ribs could be broken and a lung or spleen punctured because of the necessary force applied during CPR

Brain injury can occur if the patient has been without oxygen. This can result in intellect and personality change or permanent unconsciousness (persistent vegetative state)

Patient could be placed on a ventilator for a prolonged period of time, which creates an emotional and financial hardship on the family

The family will be burdened with making the decision to withdraw the ventilator

Faith/Cultural Reasons for Refusal

Religious/Spiritual people have a strong belief that God will heal the sick. Patients and families do not want to lose HOPE. This is more realistic when there is a reasonable possibility of a good outcome.Hope is different than wishing Hope is future-oriented and directed at an objectHope is associated with uncertainty and

therefore with possibility Ask, “Can you tell me what you hope for now?”Often, there is hope for a peaceful and pain free

death

Faith/Cultural Reasons for RefusalDo Not Resuscitate- implies “refusing to

take action.”Again, people do not want to give up

hopeAND- Allow Natural Death: removes the

power from the clinicians and gives the power back to God. Now the hope can shift from curative to palliativeAmbivalence on the part of the patient

or family is often communicated through religious language. “Let God decide”

Sometimes family members will use “It is against our religion” to slow down the decision making process

“When I am dying, I am quite sure that the central issues for me will not be whether I am put on a ventilator, whether CPR is administered when my heart stops, or whether I receive artificial feeding. Although each of these could be important, each will almost certainly be peripheral. Rather, my central concerns will be how to face death, how to bring my life to a close, and how best to help my family go on without me.”

John Hardwig

Use of Opiates and Withdrawal of Medication

Use of Opiates to Control Pain- Problem:

Addiction versus ToleranceMyths:

Patients are given opiates to hasten their death

Fear of addictionOpiates are dangerous

Medication: MYTHS

Fentanyl patches arrest breathing

Patients will become “tolerant” to the pain medication

Opiates cause side effectsChoose pain control over grogginess or sleeping more

Use of Opiates and Withdrawal of Medication

Withdrawal of MedicationMedications for End Stage Alzheimer’s patients.These medications can do more harm than good

Medications are routinely withdrawn when a patient is actively dying

Family members inability to accept terminal diagnosis

Disposition of Remains:Cremation- Faith Practices

Hindu-Cremation as soon as possibleBuddhist- Cremation is the most acceptedIslam- Strictly forbiddenJudaism- For most, cremation is strictly forbidden

Messianic Jews are the exceptionAfrican Americans- more accepted todayHispanic-Choose cremation for financial reasonsMost Catholics do not support cremation Caucasian- Very accepting of cremationNative Americans- Most are buried, not cremated

Questions and Answers

Resources Living With Grief: Diversity and End-of-Life Care, Edited by Kenneth J. Doka and

Amy S. Tucci, part of Living With Grief series, (Hospice Foundation of America: 2009) www.hospice foundation.org.

Lynne Ann DeSpelder and Albert Lee Strickland, The Last Dance: Encountering Death and Dying, (New York, NY: McGraw-Hill, 2009)

Handbook of Thanatology: The Essential body of Knowledge for the Study of Death, Dying, and Bereavement, Editor-in-Chief: David Balk, New York: Routledge, 2007) www.adec.org

Janice Harris Lord, Melissa Hook, Sharifa Alkhateeb, Sharon J. English, Spiritually Sensitive Caregiving: A Multi-Faith Handbook, (Burnsville NC: Compassion Books, 2008)

Ira Byock, The Four Things That Matter Most, (New York, NY: Free Press, 2004) Walter F. Baile, Robert Buckman, Renato Lenzi, Gary Glober,Estela A. Beale,

Andrzej P. Kudelka, “SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer,” The Oncologist, 2000, 5:302-311. doi: 10.1634/theoncologist.5-4-302. http://theoncologist.alphamedpres.org/content/5/4/302

Kathleen Ciccone, Principal Investigator, “Breaking Bad News, A Web-Based Educational Program for Physicians,” Healthcare Association of the New York State Breast Cancer Demonstration Project, NY, 2003, www.hanys.org

Resources continuedHank Dunn, Hard Choices for Loving People. (Landsdowne,

VA: A&A Publishers, 2000) www.hankdunn.comLaVone V. Hazell, MS, FT, LFD. “Cross-Cultural Funeral

Service Rituals,” Article retrieved 11/14/2013 http://www.funeralwise.com

Kathleen Dowling Singh, “Taking a Spiritual Inventory,” Article from On Our Own Terms: Moyers on Dying, Article retrieved 10/2/2013. http://www.pbs.org/wnet/onourownterms/articles/inventory2.html

Artificial Nutrition and Hydration: Beneficial or Harmful? https://www.americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/48-artific...

Withholding or Withdrawal of Nutrition or Hydration http://www.livestrong.com/article/428169-withholding-or-withdrawal-of-nutrition-or-hydr...

Resources continuedArtificial Nutrition in Older People with Dementia:

Moral and Ethical Dilemmas http://web.ebscohost.com/ehost/delivery?sid=e113db9a-ff09-4098-a58d-5177dbf5e4c%4...

Anticipatory Grief Work: What Is It and How Do You Do It? http://www.americanhospice.org/grief/working-through-grief/81-anticipatory-grief-work...

Anticipatory Grief http://en.wikdipedia.org/wiki/Anticipatory_grief

Use of Opiates to Manage Pain in the Seriously and Terminally Ill Patient http://www.americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/233-use-of...

Resources continuedIdentifying and Addressing Pain in Cognitively

Impaired Older Adults http://www.americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/468-identifying...

Pros and Cons of “Do Not Resuscitate” Orders in Nursing Homes:: California Nursing Home Abuse Lawyer Blog http://www.nursinghomeabuse lawyerblog.com/2013/03/pros_and_cons_of_do_not_resuscitate…

Roles of the Family and Health Professionals in the Care of the Seriously Ill Patient http://americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/524-roles...

Resources continuedSelf-Assessment of Your Beliefs About Death

and Dying http://www.pbs.org/wnet/onourownterms/articles/quiz.html

Where’s That Advance Care Directive http://newoldage.blogs.nytimes.com/2013/10/17/wheres-that-advance-directive/?_r=0

Values Conflict at the End of Life http://newoldage.blogs.nytimes.com/2013/09/03/values-conflict-at-the-end-of-life/?smid=...

Caregiver stress: Tips for taking care of yourself http://www.mayoclinic.com/health/caregiver-stress/MY01231/METHOD=print

Resources continuedSpirituality and stress relief: Make the

connection http://www.mayoclinic.com/health/stress-relief/SR00035

Caregiving at Life’s End: Facing the Challenges http://www.americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/49-caregiving...

Stress relief from laughter? It’s no joke http://www.mayoclinic.com/health/stress-relief/SR00034

Stress symptoms: Effects on your body and behavior http://www.mayoclinic.com/health/stress-symptomsw/SR00008_D

Resources continuedHow to Cope With a Loved One in Nursing

Home http://www.ehow.com/print/how_4478472_cope-loved-one-nursing-home.html

Coma and Persistent Vegetative State: An Exploration of Terms http://www.americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/50-coma-...