The Family Care Specialists Role

1
The Family Care Specialists Role
Robert Coppel Family Care Specialist, OneLegacy
2
Meet the Team
3
What is the Role of the FCS?

• Arrive Early
• Work with hospitals
• Huddle
• Advocate for families
• Decouple
• Express condolences

4
What is the Role of the FCS?

• Assess understanding
• Engage the family in conversation about their
  loved one
• We HONOR their story
• It is their story
• Transition to donation as appropriate

5
Our Philosophy

• Adopted Dr. Alan Wolfelts idea of companioning
  a bereaved family
• We are not the experts on grief
• We will take the familys lead
• We will not lead the family in any direction
• We will be with them through their journey

6
Working with the Families

• Establish a connection
• Build trust
• Identify family power dynamics
• Provide technical information and education
• Judge timing/pacing
• Evaluate familys emotional level

7
Working with the Families

• Support and normalize familys grief
• Address and affirm religious and cultural views
• Identify and address issues caused from a broken
  process
• Help family transition present to past
• Provide ongoing support

8
First Person Consent

• First Person Consent
• in the absence of an express, contrary
  indication by the donor, a person other than the
  donor is barred from making, amending, or
  revoking an anatomical gift of a donors body or
  part

CA HS Code 7150.35
9
Registered Donor

• Registered through DMV or on-line
• Legal First Person consent
• OL Call Center checks CA Registry when referral
  is received
• Important to provide family with knowledge of
  patients decision to be an organ donor
• Provides sense of comfort to family to know
  patients decision

10
Initiating the Approach

• Has the doctor talked with you?
• What did he/she tell you?
• What does that mean to you?

11
Initiating the Approach

• Explain brain death even if family understands.
  Keep in simple terms
• Discuss funeral arrangements
• Discuss coroners case and possible autopsy

12
Dual Advocacy

• The requestor advocates for both the potential
  donor family and the waiting recipients by
  helping the donor family to understand
• The overwhelming need for life-saving organs
• The rare opportunity they possess to save and
  touch the lives of potential recipients and their
  families.

13
Honoring the Choice

• Honoring family choices means offering
  information, education and choices- and
  respecting the familys decision.
• Remember, the only people who know what is best
  for survivors are the survivors.
• Regardless of the familys donation decision, it
  is our role to continue to offer information,
  reassurance, and support.

14
Honoring the Choice

• Honoring family choices means offering
  information, education and choices- and
  respecting the familys decision.
• Remember, the only people who know what is best
  for survivors are the survivors.
• Regardless of the familys donation decision, it
  is our role to continue to offer information,
  reassurance, and support.

15
Honoring the Choice

• Honoring family choices means offering
  information, education and choices- and
  respecting the familys decision.
• Remember, the only people who know what is best
  for survivors are the survivors.
• Regardless of the familys donation decision, it
  is our role to continue to offer information,
  reassurance, and support.

16
If Family Declines Donation

• Offer support to family as they gather relatives
  and friends to say good-bye
• Provide packet of information
• Offer to help with funeral arrangements, grief
  support, and referrals

17
If Family Consents to Donation

• Offer family a Memory Box and Handprints
• Support family friends throughout process
• Provide grief packet
• Information on organ and tissue donation
• Family Services support programs
• Call family after recovery to provide information
  about organs recovered

18
Tissue Approach with Organ

• At hospital - OneLegacy Coordinator onsite
• profit vs non-profit
• how tissues are used
• other tissue consent questions
• ask for consent on every tissue

19
Tissue Only Approach

• Tissue Family Care Coordinator contacts
  next-of-kin at home
• Call generally made two hours after family leaves
  the hospital
• If family consents for tissue donation, informed
  consent is recorded
• Same language requestors are available

20
Our Inspiration Donors and Their Families

• We are inspired by donor families who are so
  giving at a time when when they have suffered
  such a great loss

Cathy Perez, mother of Louis Silva, organ donor