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Donation Perspectives

Donation Perspectives. Addressing the Roles of Culture, Language, Race and Community October 16-17, 2013 . The LifePoint Difference. South Carolina, The Palmetto State Family Support Services Program Family Support Counselors Nancy A. Kay, CEO LifePoint , Inc.

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Donation Perspectives

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  1. Donation Perspectives Addressing the Roles of Culture, Language, Race and Community October 16-17, 2013 .

  2. The LifePoint Difference • South Carolina, The Palmetto State • Family Support Services Program • Family Support Counselors • Nancy A. Kay, CEO • LifePoint, Inc.

  3. The LifePoint Difference • South Carolina • “The Palmetto State”

  4. Total Population: South Carolina Total US Pop. 309 Mil % AA 12.6 % Total SC Pop. 4.6 Mil % AA 28 % 2010 US Census

  5. organ waitlist South Carolina Total US 130,195 % AA 30% Total SC 988 % AA 63 % UNOS Data Sept. 2013

  6. Renal waitlist South Carolina Total US 104,773 % AA 34% Total SC 839 % AA 67 % UNOS Data Sept. 2013

  7. south carolina Then… In 1997, overall Consent rate for donation was 41%56% - caucasians20% - africanamericansWe knew we had to change!

  8. South Carolina NOW: 2009-2012

  9. The LifePoint Difference • Our Program • LifePoint Family Support Services

  10. Lifepoint Family Support Program • To obtain these results, we transitioned from… • Procurement Coordinators that were responsible for all activities related to professional education, hospital development, donor referrals, obtaining consent, donor management and organ distribution, organ preservation, and donor follow-up.

  11. Lifepoint Family Support Program • …To a family-focused program that emphasizes support and education.

  12. Lifepoint Family Support Program • Why? • Consent for organ donation is the largest obstacle in increasing the number of organ donors in the United States.

  13. Lifepoint Family Support Program • Goal • To assist and support family needs during a time of crisis. • Tofacilitate the education and understanding of the Brain Death. • To facilitateend-of-life options.

  14. Lifepoint Family Support Program • Services: • First responder to every potential donor referral • Discuss case with health care team (set communication plan for family) • Keep family informed with health care professionals regarding status of their loved one • Facilitate the family’s full understanding of patient’s progress, lack of progress or clinical deterioration • Ensure family understands the tests performed regarding brain death and their outcome • Assist family with issues regarding end-of-life decisions and make the initial approach about organ donation, when appropriate • Remain with the family. Assist with needs regardless of decision to donate

  15. Lifepoint Family Support Program • Overall Key Concepts • Assess family needs (dynamics, level of understanding, emotionality at the bedside ) • Observe & listen • Understand the grief concept • Focus on caring for the family • Consistent and frequent contact with family • Repetition in education • Help with details (phone calls, arrangements) • Be an advocate for the family • Be a resource to obtain the information they are seeking • No early mention of organ donation!

  16. The LifePoint Difference • Our Staff • Family Support Counselors

  17. LifePoint Family Support Staff 2013 Greenville Area (4 FTEs) • 2 African American • 2 Caucasian Columbia Area (3 FTEs) • 1 Hispanic • 2 Caucasian Charleston Area (4 FTEs) • 2 African American • 1 Hispanic • 1 Caucasian • Myrtle Beach Area (1 FTE) • 1 African American • FSC Manager (1FTE)- Hispanic Today 5African American 3 Hispanic 5Caucasian

  18. Lifepoint Family Support Counselors • Culturally diverse staff • Varying educational/professional/personal backgrounds: • Certified Grief Counselors (GC-C) • Certified Child and Adolescent Grief Counselors • RN • LPN • Former Deputy Coroner • Chaplain • Donor family • Hispanic FSCs certified in medical interpretation • Diversity leads to adaptability when working with families

  19. family support counselors what we have learned… • What families hear and what they understand is often not the same. • Families rarely retain information that is initially explained to them. • Families need repetitive, often lengthy and detailed discussions in order to understand. • Families need continuity of supportive, emotional care • Almost ALL families need more in-depth explanation about the brain death prior to the discussion of organ donation. • Families most always respond favorably when treated with dignity and respect (not all will donate, but most will). • It is importantfor AA families to understand the need for transplantation in their community.

  20. family support counselors what we have learned… • There is a well documented historical mistrust in healthcare providers in the African American community. • Withholding treatment or no resuscitative measures are often viewed as another attempt to limit healthcare. • Advanced care planning or directives are often perceived with distrust and suspicion that care will be diminished. • This results in a breakdown in communication/ interaction between the healthcare provider, the family, and ultimately, with discussions regarding organ donation. • Brain death education could be limited if not withheld in order to avoid “family drama”. • Lack of understanding can result in stereotyping.

  21. family support counselors what we have learned… • Common stereotype: • African American families don’t donate. • African Americans will donate organs at a very high rate when: • They have a full understanding of their loved one’s hospital course and an explanation of brain death in a manner they can understand. • They have an understanding of the donation process and the need in the African American community. • They are treated with open honesty, respect and dignity

  22. family support counselors what we have learned… • Common stereotype: • Minority families who grieve outwardly and loudly will not donate. • Families will donate organs at a very high rate when we understand and accept their individuality: • African American families are usually very emotional and dramatic at the loss of a loved one, but this is part of their heritage and culture, and an important part of acceptance and comfort. • When we accept that it is not unusual to have large groups of people/ family present, because it is part of their support system.

  23. observations for the future… • We have learned that African American families have strong community presence in the hospital. • Many know someone that is currently waiting for a transplant. • Many families want everyone involved when receiving information about the patient status. • BUT…

  24. observations for the future… • Despite strong community presence, decision-makers prefer privacy/ isolation/complete confidentiality when it comes to decisions regarding organ donation. • Why? • Fear of family/community disapproval? • Shame? Embarrassment? • We MUST know these needs ahead of time!

  25. Questions?

  26. White Population Groups Jennifer Prinz Chief Operating Officer, Donor Alliance Patti Mulvania Senior Clinical Educator, Gift of Life Donor Program

  27. Communities in Transition:Successful Outcomes in Donation Authorization for Multicultural PopulationsWhite Population Groups Jennifer Prinz Chief Operating Officer Donor Alliance Denver, CO Patti Mulvania Senior Staff Educator Gift of Life Donor Program Philadelphia, PA

  28. Obtaining Desired Results

  29. DSA Demographics 4 offices and free standing recovery center serving Colorado and most of Wyoming. • 5.5 Million Population • 108 Acute Care Hospitals • 4 Transplant Centers • 11 Transplant Programs 1 main office serving Eastern Pennsylvania, Southern New Jersey & Delaware 2nd office in the Hershey, PA area housing GLDP Eye Bank and utilized by regional staff. • 10.4 Million Population • 130 Acute Care Hospitals • 16 Transplant Centers • 44 Transplant Programs

  30. Donor Demographics

  31. Outcomes in Donation Authorization White Population Groups2009 - 2012

  32. Obtaining Desired Results

  33. Staffing Models 4 Masters Prepared/Licensed Social Workers 2 MA in Counseling 1 PHD Psychologist 2 Bachelors trained (Spanish and Child Life Specialist) 1 Associates Degree Average years of Experience for team is 7.3 years Longest is 12 years • 40 Transplant and Referral Coordinators • Nurses/EMS • Various Bachelor’s and Master’s degrees (all with previous clinical experience) • Average years of experience for team is 5.4 years • Longest is 13 years

  34. Donor Alliance Family Support Staff Jennifer H. Kristen K. Myrna G. Julia C. Mitch T. Supervisor Heather H. Anissa C. Emily N. Lee F.

  35. Gift of Life Donor Program Transplant Coordinators

  36. Staff Responsibilities Transplant Coordinators First response / referral Evaluation Plan with HCT Family Communication/Support Med Soc Documentation Donor Assessment & Clinical Management Organ Allocation Recovery Information to Family Care Services for Post-Case Family Follow-up Family Support Staff • First response / referral • Evaluation • Plan with HCT • Family Communication/Support • Med Soc Documentation • Support during case as necessary, attend all DCD cases, support family when transferred to recovery center • Post-Case Family Follow-up

  37. Obtaining Desired Results

  38. Formal Structure Effective Feedback Clear Expectations Performance Management Leadership Oversight

  39. Defined Training Consistent Messaging “ All In” Organizational Commitment to Performance Quality Improvement Strong Relationships Process Measurement Leadership Support

  40. What Do We Know About Gaining Authorization To Organ Donation? • Family and patient characteristics matter • How one approaches the donation conversation matters • OPO requesters perform better than hospital-based HCPs • (Best performance is OPO requestors partnered with HCPs) • What one says makes a difference • How one says it makes a difference • Still large gaps in performance between requesters • Need communication training and for that training to be taken seriously by the requesters Slide courtesy of Laura A. Siminoff, PhD

  41. Successful Requester Is An Advocate For Organ Donation Beliefs affect outcomes • Favorable attitudes on the part of requesters (OPO staff and healthcare providers) have a positive effect on consent rates • Requesters who have confidence in their abilities to obtain consent and believe that donation is beneficial to families tend to have higher consent rates Slide courtesy of Laura A. Siminoff, PhD

  42. Orientation: Developing Knowledge and SkillsHardwiring Habits and Standard of Care • Standard of Practice • Consistent Messaging • Comprehensive Classroom and Web-based Training • Role-play • Video • 1:1 Supervision and Coaching • Routine Feedback • Case Observation • Core Competencies • Real-time Resources

  43. Continuing Education to Sustain Skills and Improve Outcomes • Established Core Competencies / Methods to Assess and Strengthen • Annual Workshops • Scenario-based Skills Practice (Team and One-on-One) • Proficiency Evaluations • Case Review – Peer and AOC/Family Support Supervisor • Real-time Coaching

  44. Introduction, Orientation and On Going Competency

  45. Assessment and Coaching on Leading Family Donation Conversations Foundation and Follow-Through

  46. Family Communication And Donation Conversation:A Process Not An Event

  47. Build and Sustain a Highly Skilled Family Communication and Care Team

  48. Philosophy & Commitment On-Going Quality Improvement Establish Structure “ All In” Organizational Commitment to Performance Develop Process to Reach Goals Data Feedback Outcomes

  49. Questions?

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