Transcript 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
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
Introduction: End of Life Issues
Regarding Religion/Spirituality/Cultural
 Define Religion and Spirituality
 Religion- Embraces Several Dimensions
 Experiential
 Ritualistic
 Consequential
 Intellectual
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
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
Complicating Factors
Fear of God’s judgment
Conflicts with medical practice
Moral guilt as a penalty for sin
Lack of belief
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
6-Step Protocol
(Adapted from Robert Buckman)
1. Getting started
2. What does the patient know?
3. How much does the patient want to know?
4. Sharing the information
5. Responding to patient, family feelings
6. Planning and follow-up
SPIKES- another way to define the 6 Steps
Research by Buckman adapted by Kathleen Ciccone
 S= setting
 P= perceives
 I = invitation
 K= knowledge
 E= emphasizing/exploring
emotions
 S= Strategy and Summary.
Step 1- Setting
Physical Context
Privacy
Family members
Body language
Listening 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-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
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
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.”
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”
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
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
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
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
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 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
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 values
 Hindu’s believe that death should not be prolonged or sought
 Hindu’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 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
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)
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”)
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
.
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 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
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
“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 Tolerance
 Myths:
 Patients are given opiates to hasten their death
 Fear of addiction
 Opiates are dangerous
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
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
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
Questions and Answers
Resources
 LivingWith Grief: Diversity and End-of-Life Care, Edited by Kenneth J. Doka and Amy S.






Tucci, part of LivingWith 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.5-4302. 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 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/caregivingmainmenu-10/48-artific...
Withholding or Withdrawal of Nutrition or Hydration
http://www.livestrong.com/article/428169-withholding-orwithdrawal-of-nutrition-or-hydr...
Resources continued
 Artificial Nutrition in Older People with Dementia: Moral and
Ethical Dilemmas
http://web.ebscohost.com/ehost/delivery?sid=e113db9a-ff094098-a58d-5177dbf5e4c%4...
 Anticipatory Grief Work: What Is It and How Do You Do It?
http://www.americanhospice.org/grief/working-throughgrief/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-mainmenu8/caregiving-mainmenu-10/233-use-of...
Resources continued
 Identifying and Addressing Pain in Cognitively Impaired
Older Adults http://www.americanhospice.org/articlesmainmenu-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_resus
citate…
 Roles of the Family and Health Professionals in the Care of
the Seriously Ill Patient
http://americanhospice.org/articles-mainmenu8/caregiving-mainmenu-10/524-roles...
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-thatadvance-directive/?_r=0
 Values Conflict at the End of Life
http://newoldage.blogs.nytimes.com/2013/09/03/valuesconflict-at-the-end-of-life/?smid=...
 Caregiver stress: Tips for taking care of yourself
http://www.mayoclinic.com/health/caregiverstress/MY01231/METHOD=print
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-mainmenu8/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/stresssymptomsw/SR00008_D
Resources continued
 How to Cope With a Loved One in Nursing Home
http://www.ehow.com/print/how_4478472_cope-lovedone-nursing-home.html
 Coma and Persistent Vegetative State: An Exploration of
Terms http://www.americanhospice.org/articlesmainmenu-8/caregiving-mainmenu-10/50-coma-...