Clinical Aftercare Specialist OneLegacy Family Services

Clinical Aftercare SpecialistOneLegacy Family Services

Michelle Post, MA, LMFT

The One That Counts: Working with Grief & Loss and Organ

Donation

Tell me and I'll forget. Show me and I'll remember.

Involve me and I'll understand.- Confucius

The One That Counts…

What does that mean?

Today’s Agenda

• Grief as the Great Equalizer • Personal grief and loss• Codename: Simon and debriefing

about Normal Grief• What’s happening during the

donation & communication between hospital, OPO, and Donor Family

• How to talk to kids, teens, and adults

Elizabeth Kubler-Ross - 1969

Hearses vs white vans

Underused hospice

Is Death a Universal Is Death a Universal Truth? Truth?

Who Do We Turn to? MDs (some see death as

failure)

Clergy good & bad

Funeral Homes

Crisis Response Teams

Police & Firefighters


Who Do We Turn to?

Professional Counselors: Training?

DSM Code for Bereavement gives timeframe?

2 months (numbness wearing off)

kids (23years old and under): 6-12 mo


If Death is a Universal Truth, If Death is a Universal Truth, Grief is the Grief is the

Great Equalizer…Great Equalizer…

Everyone is Affected!Everyone is Affected!

Grief Statistics:

•1 in 5 kids will experience the death of someone close by age 18 (Kenneth Doka, Editor of OMEGA Journal of death and dying)• Quick survey…

Grief Statistics:

•1 in 20 kids will experience the death of one or both parents by age 15 (Steen, 1998)

• Quick survey…

Close to 2 million children receive death benefits from a deceased worker (Social Security Administration, 2007)

What Does Grief Do?

•Children of parents who die suddenly (suicide, homicide, accident or natural causes) are 3 x more likely to develop depression and are at higher risk for post-traumatic stress disorder (PTSD) than non-bereaved children

(Brent & Melhem, 2007 University of Pittsburgh School of Medicine)

Possible Pitfalls for Those Who Do Not Reconcile Their Grief:

•Avoid love as a way to avoid pain

•Inability to acknowledge the pain of others

•Avoid risks

• Inability to express love for their own children

• Experience a sense of ‘searching’ for that which was lost

• Resisting school or work projects which demand long-term commitment

Possible Pitfalls for Those Who Do Not Reconcile Their Grief:

• Vicarious Trauma• Compassion Fatigue• Practitioner Decay

How Does This Affect Me?

Symptoms?


Fatigue

Sadness

Sleep Disturbance

Irrita

bility

Frustration

Weight

Change

Exploring Your Own Grief~ See Handout

Adapted from J. William Worden, Ph.D.: Grief Counseling & Grief Therapy: A Handbook for

the Mental Health Practitioner

Where to Start?

Family Service’s Philosophy

• Adopted Dr. Alan Wolfelt’s idea of “companioning” a bereaved family

– NOT experts on grief; we will take cues from the family 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

• Dr. Worden’s research and tasks of mourning

Philosophy

• Adopted Dr. Alan Wolfelt’s idea of “Responsible Rebels”:– NOT agents of conformity to ‘get the

child over grief’, but instead foster growth in the child.

– DO NOT assume that the friends and family members will support them in their grief journey. •Parents/siblings can be too overwhelmed.

•Friends project feelings of helplessness by ignoring the subject entirely.

From: Healing the Bereaved Child

He’s an undercover agent. He’s an undercover agent. You have to keep his You have to keep his secret.secret.

DVD available for purchase [email protected] or see Michelle

CODENAME: CODENAME: SIMONSIMON

DVD available for purchase ~ see Michelle or email [email protected]

CODENAME: CODENAME: SIMONSIMON

WHAT DID YOU NOTICE?

Symptoms?

Emotional

Social

Physical

Spiritual

Behavioral/

Psychological

Grief is…

See Handouts: Normal Kids/Teens Grief and Potential Symptoms of Grief

So…. So….

What Can ONE Do What Can ONE Do to Help?to Help?

#1 – Foster #1 – Foster communication

between hospital, OPO, and Donor

Family

But 1st – Know your stuff. What’s

happening during the donation?

Tell me and I'll forget. Show me and I'll remember.

Involve me and I'll understand.- Confucius



Leaving a donor family waiting for information, can feel MUCH longer to them then it does to

us.



#1 Question We Are Asked

WHY DOES IT TAKE SO LONG???

Donation After Cardiac Death

(DCD)

Donation After Brain Death

(DBD)

How Does Donation Occur?

DBD vs. DCD

Two opportunities…

Consent Rate –

50%

30 % of Cases

Conversion Rate –

88%

DBD vs. DCD – What’s the Difference for

a family?

DCD – Requires a Decision to remove Life Support & Donate vs. transition to long term care

Brain Death is Death – Requires a

decision about Donation

We are not taking something from the family—we are giving them the opportunity for donation.

Effective Family Support

Family

Healthcare Team

Recovery Agency

This is where we come together

#1 Question We Are Asked

WHY DOES IT TAKE SO LONG???

Donation Process Summarized

1. Clinical Triggers Met → Call 1-866-UWHC-OPO2. Evaluate organ function / Eligibility for donation w/

Transplant Surgeons3. Brain Death Note (BD) / Futility Note to OPO (DCD)4. Consent signed and faxed to OPO / Serologies drawn5. Medical-social history done by OPO6. Allocate organs to recipients7. Manage hemodynamics – lab panels every 4-6 hours8. Set OR time and make transportation arrangements

WHY DOES IT

TAKE SO LONG???

How Does Donation Occur?

Bill Snyder in Donation 101, Friday

Step 4 of Donation- Serology Phase

• Once the patient is deemed an eligible donor and we have verbal interest from a

family, we can start serologies.

• The OPO will fax a serology request form to the RN with specific instructions on how to draw serologies and what to do with them.– This form needs to be faxed back to the

coordinator with the bottom portion filled out.

• After instructions are explained, the coordinator will set up transportation for the serologies.

• Once blood is drawn by RN it is brought to the ER front desk.

• A courier will be called and pick up the

blood at the ER and then drive it to Madison.

• The OPO Coordinator will alert the core lab and tissue typing of the blood arriving and they will prep their kits for testing. – Once the lab receives the blood it takes about 4 hours to complete the serology testing and tissue typing.


• HBSAg- Hepatitis B Surface Antigen• Anti- HBC- Hepatitis B core• Anti- HCV- Hepatitis C Virus• HIV 1 and 2- Human Immunodeficiency

Virus• HTLV 1 and 2- Human T-cell

leukemia/lymphoma virus• RPR- Rapid Plasma Reagin test- Tests for

syphilis• CMV- Cytomegalovirus (many are positive)• EBV- Epstein Barr Virus


• Medical/Social History needs to be completed before organs can be recovered/allocated.

• OPO Coordinator will complete with person who knows the pt best.– May do with multiple people

• OPO is always available for family support.

Step 5 of Donation- Med/Soc Hx & Family

Support

• OPO Coordinator will request the following information to evaluate the donor and enter into our chart:– FACE sheet/Demo Sheet (urgent information)– Copy of blood type (urgent information)– H&P– Chest x-rays, CT scans, EKG– Dictated consults– Daily Nursing Flow sheets with vitals and I&O’s– ER flow sheets– Meds from last 24 hours– Blood Products administered– Consent form (2 if DCD)– Labs since admission– Brain Death clinical exam/apnea test results or DCD futility note

• PLEASE SEND THIS INFO ASAP AS IT CAN HELP SPEED UP THE PROCESS

Step 5 of Donation- Med/Soc Hx & Family

Support

Placement of Lines

• The OPO Coordinator will request the RN to place an arterial line and a central line.– Many times they will ask for CVP’s to be

measured. – This needs to be done by the MD’s, residents, etc,

who would normally place lines. – These are usually done on every case.

Lab Values/Blood Cultures

• Stat labs– ABO/RH Typing and Type and Screen

(VERY IMPORTANT TO GET ASAP along with Demo/FACE Sheet!!!)

– Blood Cultures x 2 (different sites), Sputum Culture with Gram Stain, Urine Culture and Sensitivity, UA

– CBC with diff., ABG, Chem 10, LFT’s, Coags, Amylase, Lipase, Cardiac Enzymes, HgbA1c

Organ Evaluation

• Echocardiogram• Bronchoscopy• Multiple chest x-rays• Cardiac Cath• Abdominal CT• O2 Challenges• Multiple ABG’s

• Once all of this information is received, entered into our databases, tests are complete, and serologies are done, we can begin allocation

• ALLOCATION: The process that is used to offer out organs according to the UNOS list of recipients that need an organ transplant.

Step 6 of Donation-Organ Allocation Phase

• All of the information is entered in a database and then lists are run.

• These lists come up with the recipients that are good matches to the donor– Length of wait time– Antibodies are compared– Status 1A? (Very sick pt)– 0 mismatches (PERFECT MATCH)

• Local, then regional, and then national unless there is a Status 1 recipient listed.


• Each organ is allocated separately.• Each transplant center has 1 hour to

acknowledge offer• Each transplant center has 1 hour from

time of acknowledgement to make a decision

• Can be a very long and tedious process• There are many, many phone calls during

this period and additional tests may be requested during this time.

• There is a lot of communication with transplant physicians at this time to determine if the recipient is a good fit for this donor.


Recipients• Once a recipient is selected for an

organ, a transplant coordinator calls the patient into the hospital. (Need to always be available by cell phone or pager.)

• They have 1 hour to respond and make a decision.

• Need to get to the hospital and get ready.– Labs, x-rays, prepped for OR


• Then, every 6-8 hours we will re-check– CBC, Chem 10, LFT’s, Coags, Amylase, lipase, cardiac

enzymes

• Standing orders are given to replace electrolytes.

• Changes may be made by coordinator if needed.– If brain dead patient- OPO can give orders– If DCD patient- OPO can give suggestions.

Lab Values & Family Support (cont.)

Step 7 of Donation-Manage

hemodynamics

V/S, UOP, CVP, gtts…• Measured every hour • Use orders/recommendations given

by the coordinator.• Rule of 100’s

– SBP above 100– PaO2 above 100– UOP at 100ml/hr

Step 7 of Donation-Manage

hemodynamics

• Once Allocation is complete is it time to get our team ready to go!

• Usually a Surgical Recovery Coordinator, a recovery physician, and an assistant will go on a case. – An OPC will go on every DCD

case

• The coordinator will arrange transportation (flight) to the airport and then transportation from the airport to the hospital.

Step 8 of Donation-OR Time &

Transportation

Recovery Phase: Surgical Recovery of Organs

• All organs except kidneys need to be allocated to a specific recipient prior to recovery.

• All infectious disease tests must be completed and confirmed.

• Some teams will need time to fly in from their location. (Could be multiple teams)

Step 8 of Donation-OR Time &

Transportation

Brain Death Recovery Process

• Patient is maintained on ventilator throughout the organ recovery

• Organs are dissected in situ• 3-4 hour surgery• Heart, lungs, liver, kidneys,

pancreas and intestines can be recovered

Donation After Cardiac Death

• Withdrawal of life support in the OR or ICU

• Cardiac death occurs• Surgery begins 5 minutes after

cessation of cardiac function and declaration by patient’s physician

• Rapid recovery with organs procured en bloc

• 1-2 hour surgery• Lungs, liver, kidneys and pancreas

can be recovered

Recovery Phase

So…. So….


#1 – Foster #1 – Foster communication

between hospital, OPO, and Donor

Family

Know what’s happening during the

donation & share

#2 Develop a Communication Plan/ Introductions

• Team Huddle– “Time-out” for all members of healthcare care

team to establish a needs and communication plan for family

• Things to consider:– Ensure family’s emotional, physical and

spiritual needs being met– Circumstances surrounding death– Religious/cultural background and rituals– Varying family structures– Patient’s end of life wishes


#3– Watch Your #3– Watch Your LanguageLanguage

(reference: Grieving (reference: Grieving Kids & Teens Do’s Kids & Teens Do’s and Don’ts & Child and Don’ts & Child Speak documents)Speak documents)

Why “Watch Your Why “Watch Your *#$%&**#$%&* Language?”Language?”

Why is language important?

It’s okay to say dead…

died… death…

Let’s practice!

Helps with Worden’s First task of mourning – to accept the reality of the death

#3 Watch Your #3 Watch Your *#$%&**#$%&* Language! Language!

Adapted from Children & Grief: When a parent dies by J. William Worden, Ph.D

DO: Use Truthful and clear information

DO NOT: Use colloquial sayings or religious explanations

DO: Explain it is not contagious.

Suicide: Watch your language!

What does the word “Commit” imply?

Instead use: Died by Suicide or Suicided

The Legal history of Suicide was that it was a crime.

Was this person thinking clearly?

What disease causes Suicides?

•Adapted from Adapted from Didi Hirsch Suicide Prevention ProgramDidi Hirsch Suicide Prevention Program

#4 Normalize Feelings #4 Normalize Feelings


DO: Acknowledge and validate their feelings. Express Condolences, Acknowledge what they have been and ARE going through.

- Their loss is primary—not donation - Bereavement support and crisis intervention skills, including cross-cultural variability - Teamwork to support the family

DO: Remember they can only tolerate intense grief in spurts. (10 – 15 min

for kids)

#5 Address Fear & Anxiety #5 Address Fear & Anxiety


DO: Address their fears and anxiety.

For Kids/Teens:DO: Let them know most people live to be very oldDO: Develop a plan about who will care for them.

#5 Address Fear & Anxiety #5 Address Fear & Anxiety

Make a Worry Doll (Demo Later Today)

#6 Encourage Consistency #6 Encourage Consistency


DO: Provide limit setting and consistent discipline

DO: Encourage routine activities.

DO NOT: Encourage Change in 1st 12 months, Instead: keep home, school,

work, relationships the same.

To Include or Not to Include Kids in the Hosp/Funeral? Seeing/Touching the Body?

#7 Include them!!!!#7 Include them!!!!


Prepare children & teens & adults for what they will see, hear,

feel and/or smell.

The Harvard Study Research: The picture in their head is often worse than what is real. - Not being involved is a risk factor for later complicated grief

Let them make an informed choice.

#7 Include them!!!!#7 Include them!!!!


Include children in all aspects of information sharing, hospital visits,

and family mourning rituals.

Debrief with them.

In ICU or at a Funeral: Provide a buddy for them (1 adult per child)

#8 Learn a Grief Model#8 Learn a Grief Model


J. William Worden’s 4 Tasks of J. William Worden’s 4 Tasks of MourningMourning

Task 2: To Experience the Pain of the (Death)Task 3: To Adjust to an Environment in Which the Deceased is Missing

Task 4: To Relocate the Dead Person within One’s Life and Find Ways to Memorialize the Person

Task 1: To Accept the Reality of the (Death)

#9 Help with Remembering

Help the family start thinking about the “legacy” their loved one will leave

• Encourage story telling– Opportunity to share a part of their life with you

and to introduce you to the person they loved through memories

– Help facilitate the process• strengthens rapport and trust• comforting and reassuring

• Memory Boxes• Hand Molds – demo later today in our

workshop

#10 Explore Your #10 Explore Your Own Grief! (see Own Grief! (see

handout)handout)#11 Listen!#11 Listen!

#12 Develop Self-#12 Develop Self-care and rituals to care and rituals to let go.let go.

It’s a mistake not It’s a mistake not to!to!

What Else Can We Do?

Read: Teddy Roosevelt

#13 – Understand The #13 – Understand The Power Of Being The Power Of Being The

ONE that CountsONE that Counts


...lives are changed ...lives are changed foreverforever


Clinical Aftercare Specialist OneLegacy Family Services

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