Caring for the

Potential Donor Family

Maria Bourne, FCSS

OneLegacy

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.

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?”

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.

MentalMD

Physical RN, RT

SocialSocial Worker, Spiritual, Child Life Specialist

Spiritual Chaplain

Family Patient

Caring for the Potential Donor Family

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

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

Place for the Request

in the waiting roomat bedsidein the hallway

Never Always

in a private room

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

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

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

STEP 1 STEP 2

“Decoupling” is Key

MD informs family of death

Family deciding to withdraw support

Family is presented with donation opportunity

Family must be given time

alone to process

this new information

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.”

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”

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 meaning to an otherwise senseless

event that has occurred.

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

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

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.