Caring for the Potential Donor Family Maria Bourne, FCSS OneLegacy

1. Caring for the Potential Donor Family Maria Bourne, FCSS OneLegacy

2. Our Mission OneLegacy saves and heals lives through organ, eye and tissue donation, comforts the families we serve, and inspires our communities to Donate Life.

3. What Families Are Asking A family’s experience starts when they enter the ER. “What happened?” “How bad is he?” “Will he survive?” “How much time do we have?” “Can we see him?”” What happens now?”

4. What Families Need to Hear The family needs to know that staff are working and hoping for the best outcome even though the injuries are serious and their loved one may not survive. Taking away all hope for recovery from the very beginning may anger the family. They feel the staff have “given up” and won’t do everything possible to treat them. This may lead to distrust, frustration and confrontation later on.

5. Caring for the Potential Donor Family Family Patient

6. Caring for the Potential Donor Family • Establish a connection • Pull in all available resources, Chaplain, MSW etc. • Build trust • Identify family – decision makers • Provide technical information and education • Judge timing/pacing • Evaluate family’s emotional level

7. Caring for the Potential Donor Family • Support and normalize family’s grief • Address and affirm religious and cultural views • Identify and address issues caused from a broken process • Help family transition from loved one being present to past • Provide ongoing support

8. Place for the Request in the waiting room at bedside in the hallway Never Always in a private room

9. Consistent Language is Important • Avoid Technical Jargon • Use concrete, metaphoric language • Be Consistent • Dead – not brain dead, clinically dead, essentially dead, appears dead, gone, passed on, expired

10. What Does the Family Need? Physician tells family: “Mother is brain dead” Family tell physician, “We’re ready to withdraw treatment” The family needs… DECOUPLING RESOLUTION

11. When to Approach the Family • After Brain Death Pronouncement • If Family Brings up Donation • If Family decides to take loved one off of the ventilator • After the family has had adequate time to accept death

12. “Decoupling” is Key MD informs family of death Family deciding to withdraw support STEP 1 STEP 2 Family is presented with donation opportunity Family must be given time aloneto process this new information

13. What to Say…and How? After you finish helping the family with all their needs, you tell them there is one more thing for them to consider: “ can help other families through the gift of organ/tissue donation.”

14. Compassion In Action • Trust = Honesty, Integrity, Reliance, Ability • Perception comes from the observation over time of our attitudes and behaviors Create an environment of“Compassion in Action”

15. Donation Gives Greater Meaning For many families: • The gift of organ and tissue donation is the only positive experience in the tragic chain of events surrounding the loss of their loved one. • It can help give meaningto an otherwise senseless event that has occurred.

16. A Sense of Purpose and Comfort… • Empowers families • Altruism can have a healing effect • Chance for families to honor loved one’s giving character or known wish (1st person registry) • Living legacy

17. Our Philosophy Adopted Dr. Alan Wolfelt’s idea of “companioning” a bereaved family • We are not the experts on grief; we will take the family’s lead to understand what we can do to support them • We will not lead the family in any direction, but be with them through their journey

18. Donation is Family Care We have to remember that this is the most horrible day for them. There is nothing that we can do or say to mend their broken hearts, but together WE can give them the gift of peace by providing compassionate care. The hardest thing for families is not making a decision regarding donation. The hardest decisions have already been made, whether it is to withdraw treatment or having to accept the brain death.