SLIDE 1 Reducing Disparities in the Quality of Palliative Care for Older African Americans through Improved Advance Care Planning (EQUAL ACP)
Kimberly S. Johnson MD MHS, Principal Investigator
- Ms. Ina Stern, Advance Care Planning Facilitator
Duke University School of Medicine
SLIDE 2 What is Advance Care Planning (ACP)?
- ACP is making decisions about the healthcare you would want in the
future if you happen to become too sick to speak for yourself.
- Sharing values and goals with loved ones and healthcare providers
- Deciding what treatments you would or would not want
- Completing advance directives
- Treatments you would or would not want
- Who you choose to make decisions for you
SLIDE 3 ACP IS GOOD FOR PATIENTS & FAMILIES
- More likely to get the care they want
- More likely to die with hospice
- Less likely to spend last months in
hospital
- Communication with doctors is better
- Caregivers are less depressed, stressed
and anxious after their loved one dies
SLIDE 4
African Americans are less likely to participate in ACP
SLIDE 5 ACP as a way to improve care for African Americans
- African Americans experiences lower quality care at the end-of-life
than Whites.
- ACP may improve care in many areas where African Americans
experience lower quality
- Communication with providers
- Care consistent with preferences
- Hospice Use
- Overall Satisfaction
SLIDE 6
African Americans have positive attitudes about ACP
“There should be a point where you talk about what to do in the future. … before he needs a breathing tube.” “We had talked about it. So that made it easier. The doctor asked me about putting him on the ventilator, I said no. He didn’t want that.” African-American Caregivers
SLIDE 7
Barriers to ACP
Theme Topics and Quotes Discomfort People are not comfortable or ready to talk about it. Lack of Knowledge People do not know what an advance directive is. Spiritual Beliefs Religious Beliefs are Important Trust People do not trust the medical community. Relationship with physician Physicians are always rushing and you don’t feel any compassion from the physician.
SLIDE 8 EQUAL ACP: Goals and Questions
Goal: Create opportunities for older adults with serious illness to participate in ACP and to reap the benefits.
Key Questions
- What is the best way to help older African Americans and
Whites to discuss and write down their wishes for care?
- What is the best way to close the gap in advance care
planning between African Americans and Whites?
- What is the best way to close the gap between African
Americans and Whites in the quality of end-of-life care?
SLIDE 9
HOW WILL THE STUDY BE CONDUCTED?
10 CLINICS; 5 STATES (AL, GA, TX, NC, SC) 800 ADULTS AGE 65 OR OLDER with serious illness (half African-American) FOLLOWED 1 YEAR to determine if they participate in ACP (write down or discuss wishes) THE STUDY WILL LAST FOR 5 YEARS
SLIDE 10 Study Design: Comparative Effectiveness
COMPARING 2 WAYS TO INCREASE ACP
FIVE WISHES FORM Patient-Driven Approach
- Patients receive an easy to read form
which allows them to discuss/write down their wishes.
- ACP facilitator follows up by phone.
VS.
RESPECTING CHOICES Structured Approach ACP facilitators leads 60 to 90 minute conversation with patients and their caregivers.
SLIDE 11 ACP and Shared Decision Making (SDM)
Patients Families
- Beliefs
- Values
- Goals
- Preferences
- Knowledge
SDM Treatments Proxy Advance Directives
Healthcare Provider
- Diagnosis
- Prognosis
- Treatments--benefits,
and burdens
SLIDE 12 African Americans Experience Lower Quality SDM
Patients Families
- Beliefs
- Values
- Goals
- Preferences
- Knowledge
MISTRUST POOR COMMUNICATION
Healthcare Provider
- Diagnosis
- Prognosis
- Treatments--benefits,
and burdens
SLIDE 13 ACP Facilitators: How do we improve SDM?
- How can nonhealthcare providers or ACP facilitators improve SDM?
- Does race matter?
- Shorter visits, less positive affect, less relationship building, less information
- EQUAL ACP Facilitators
- ½ African American ; ½ White
“African Americans need information from a trustworthy source. This involves learning from peers, someone that “is like me”. African American community member
SLIDE 14
Different Model of SDM
SLIDE 15
Experience of ACP Facilitator
SLIDE 16 Improving Shared Decision Making in ACP: What Really Matters?
- Creating Trust
- Listening without Judgment
- Affirmation and Acceptance not Agreement
- Asking Permission—Fostering Relationships
- Curiosity even when uncomfortable
- Empathy
- Addressing desires and fears
SLIDE 17 Acknowledgements
- PCORI
- EQUAL ACP Research Team
- ACP Facilitators
- Patients/Families
