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TOUGH QUESTIONS, HONEST ANSWERS

TOUGH QUESTIONS, HONEST ANSWERS. Rev. Dr. Cherie Wallis Jackson, BCCC,CFHPC Rev. Janet Ihne, M.Div. Presentation Purpose. To examine Cultural and Faith Based Decisions at End of Life including: Religion/Spirituality: Facilitating and Complicating Factors

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TOUGH QUESTIONS, HONEST ANSWERS

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  1. TOUGH QUESTIONS, HONEST ANSWERS Rev. Dr. Cherie Wallis Jackson, BCCC,CFHPC Rev. Janet Ihne, M.Div.

  2. Presentation Purpose • To examine Cultural and Faith Based Decisions at End of Life including: • Religion/Spirituality: Facilitating and Complicating Factors • Breaking Bad News: When Family says, “Don’t Tell.” • Facility Placement • Perception of Hospice • Artificial Nutrition • DNR • Disposition of Remains • Use of Opiates and Withdrawal of Medication PLEASE HOLD QUESTIONS UNTIL THE END

  3. Introduction: End of Life Issues Regarding Religion/Spirituality/Cultural • Define Religion and Spirituality • Religion- Embraces Several Dimensions • Experiential • Ritualistic • Consequential • Intellectual

  4. Religion/Spirituality • Spirituality: • Has many definitions • Spirituality gives our lives context • May or may not be connected to a specific belief system • Connection with self/others, value system, meaning • Religious observance, prayer, meditation or a belief in a higher power • Nature, art, music, or a secular community

  5. Facilitating Factors • Finding the Meaning in the Illness • A Sense of a Larger Connection • Faith Practices Enhance Health • Faith Influences Sense of Control and Places in the Hands of Higher Power

  6. Complicating Factors • Fear of God’s judgment • Conflicts with medical practice • Moral guilt as a penalty for sin • Lack of belief

  7. How to Break Bad News to the Patient • Information • Lack of formal training • Want to know • Strengthens patient/medical team relationships • Collaboration • Plan and cope

  8. 6-Step Protocol (Adapted from Robert Buckman) • Getting started • What does the patient know? • How much does the patient want to know? • Sharing the information • Responding to patient, family feelings • Planning and follow-up

  9. SPIKES- another way to define the 6 StepsResearch by Buckman adapted by Kathleen Ciccone • S= setting • P= perceives • I = invitation • K= knowledge • E= emphasizing/exploring emotions • S= Strategy and Summary.

  10. Step 1- Setting • Physical Context • Privacy • Family members • Body language • Listening skills

  11. 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.

  12. Step 3-Invitation • There are different ways of asking how much a patient or family member wants to know. • Requesting information • Denying information • Choice of information • Handling information

  13. 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 cooperation • Honesty promotes trust • Provides an opportunity to say goodbye

  14. 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 dying • Most patients handle the news better than expected • Ira Byock, “The Four Things That Matter Most.”

  15. Step 4- Giving the Knowledge • Say the information, then stop. • Avoid monologue, promote dialogue • Avoid medical jargon • Pause frequently, giving information in small pieces • Check for understanding • Use silence, and body language • Don’t minimize the severity • Avoid vagueness and confusion • Discuss the implications of “I’m sorry”

  16. Step 5- Acknowledging Emotions • Emotional Response • Tears, anger, sadness, love, anxiety, relief, other • Cognitive Response • Denial, blame, guilt, disbelief, fear, loss, shame, intellectualization • Basic psychophysiological response • Fight-flight

  17. Step 5- Responding to Feelings • Be prepared for: • Outburst of strong emotion • A broad range of emotions • Give time to react • Listen quietly and attentively • Encourage descriptions of feelings • Use non-verbal communication

  18. Step 6- Strategy and Summary • Plan for the next steps • Additional information: providing information of the dying process • Treat symptoms • Discuss potential sources of support • Before leaving, assess: • The safety of the patient • Caregiving support at home or facility • Repeat news at future visits as requested

  19. Step 6- When Language is a Barrier • Use a skilled translator • Someone who is familiar with medical terminology • Comfortable translating bad news • Consider telephone translation services • Avoid family as primary translators • Confuses family members • May not know how to translate medical concepts • Revise the news to protect the patient • Supplement the translation • Speak directly to the patient

  20. 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?

  21. Placement in a Skilled Nursing Facility • Benefits of Placement • 24 hour care • Safe environment • Daily nutritious meals • Rehabilitation services • Most homes are not designed to facilitate wheelchairs/walkers • Describe 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

  22. 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 possiblethrough 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

  23. 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 values • Hindu’s believe that death should not be prolonged or sought • Hindu’s prefer to die at home surrounded by family

  24. 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

  25. Artificial Nutrition • Explain Benefits: • Prolongs life • Promoting patient comfort by preventing skin breakdown, metabolic abnormalities and dehydration • Facilitates healing of wounds • Explain Negative Impact: • Aspiration, which can lead to pneumonia • When actively dying, does more harm than good • Need to make decision to withdraw feeding

  26. 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 complications • Indications 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)

  27. Artificial Nutrition and Hydration • Defined: 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”)

  28. Artificial Nutrition and Hydration: Myths • Myth: ANH prevents aspiration pneumonia • Myth: ANH speeds wound healing • Myth: 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 .

  29. 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

  30. 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

  31. 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 object • Hope 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

  32. Faith/Cultural Reasons for Refusal • Do Not Resuscitate- implies “refusing to take action.” • Again, people do not want to give up hope • AND- Allow Natural Death: removes the power from the clinicians and gives the power back to God. Now the hope can shift from curative to palliative • Ambivalence 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

  33. “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

  34. Use of Opiates and Withdrawal of Medication • Use of Opiates to Control Pain- • Problem: • Addiction versus Tolerance • Myths: • Patients are given opiates to hasten their death • Fear of addiction • Opiates are dangerous

  35. Medication: MYTHS • Fentanyl patches arrest breathing • Patients will become “tolerant” to the pain medication • Opiates cause side effects • Choose pain control over grogginess or sleeping more

  36. Use of Opiates and Withdrawal of Medication • Withdrawal of Medication • Medications 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

  37. Disposition of Remains:Cremation- Faith Practices • Hindu-Cremation as soon as possible • Buddhist- Cremation is the most accepted • Islam- Strictly forbidden • Judaism- For most, cremation is strictly forbidden • Messianic Jews are the exception • African Americans- more accepted today • Hispanic-Choose cremation for financial reasons • Most Catholics do not support cremation • Caucasian- Very accepting of cremation • Native Americans- Most are buried, not cremated

  38. Questions and Answers

  39. 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, SharifaAlkhateeb, 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

  40. Resources continued • Hank Dunn, Hard Choices for Loving People. (Landsdowne, VA: A&A Publishers, 2000) www.hankdunn.com • LaVone 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...

  41. Resources continued • Artificial 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...

  42. Resources continued • Identifying 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...

  43. Resources continued • Self-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

  44. Resources continued • Spirituality 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

  45. Resources continued • How 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-...

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