Clinical Aftercare Specialist OneLegacy Family Services

1. Clinical Aftercare SpecialistOneLegacy Family Services The One That Counts:Working with Grief & Loss and Organ Donation Michelle Post, MA, LMFT

2. The One That Counts…What does that mean? Tell me and I'll forget. Show me and I'll remember. Involve me and I'll understand.- Confucius

3. 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

4. Is Death a Universal Truth? Elizabeth Kubler-Ross - 1969 Hearses vs white vans Underused hospice

5. Is Death a Universal Truth? Who Do We Turn to? MDs (some see death as failure) Clergy good & bad Funeral Homes Crisis Response Teams Police & Firefighters

6. Is Death a Universal Truth? 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

7. If Death is a Universal Truth, Grief is the Great Equalizer… Everyone is Affected!

8. 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…

9. 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)

10. 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)

11. 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

12. Possible Pitfalls for Those Who Do Not Reconcile Their Grief: • 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

13. How Does This Affect Me? • Vicarious Trauma • Compassion Fatigue • Practitioner Decay

14. How Does This Affect Me?

15. How Does This Affect Me?

16. How Does This Affect Me? Symptoms? Sleep Disturbance Fatigue Weight Change Sadness Irritability Frustration

17. Where to Start? Exploring Your Own Grief ~ See Handout Adapted from J. William Worden, Ph.D.: Grief Counseling & Grief Therapy: A Handbook for the Mental Health Practitioner

18. 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

19. 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

20. CODENAME: SIMON He’s an undercover agent. You have to keep his secret. DVD available for purchase grahamtallman@yahoo.com or see Michelle

21. CODENAME: SIMON WHAT DID YOU NOTICE? DVD available for purchase ~ see Michelle or email grahamtallman@yahoo.com

22. Grief is… Symptoms? Physical Emotional Behavioral/ Psychological Social Spiritual See Handouts: Normal Kids/Teens Grief and Potential Symptoms of Grief

23. So…. What Can ONE Do to Help? #1 – Foster communication between hospital, OPO, and Donor Family But 1st – Know your stuff. What’s happening during the donation?

24. The One That Counts…What does that mean? Tell me and I'll forget. Show me and I'll remember. Involve me and I'll understand.- Confucius

25. The One That Counts…What does that mean? Leaving a donor family waiting for information, can feel MUCH longer to them then it does to us.

26. #1 Question We Are Asked WHY DOES IT TAKE SO LONG???

27. How Does Donation Occur?DBD vs. DCD Two opportunities… Donation After Brain Death (DBD) Donation After Cardiac Death (DCD) 30 % of Cases Consent Rate – 50% Conversion Rate – 88%

28. DBD vs. DCD – What’s the Difference for a family? Brain Death is Death – Requires a decision about Donation DCD – Requires a Decision to remove Life Support & Donate vs. transition to long term care

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

30. Effective Family Support This is where we come together Family Healthcare Team Recovery Agency

31. #1 Question We Are Asked WHY DOES IT TAKE SO LONG???

32. How Does Donation Occur? • WHY DOES IT • TAKE SO LONG??? Donation Process Summarized • Clinical Triggers Met → Call 1-866-UWHC-OPO • Evaluate organ function / Eligibility for donation w/ Transplant Surgeons • Brain Death Note (BD) / Futility Note to OPO (DCD) • Consent signed and faxed to OPO / Serologies drawn • Medical-social history done by OPO • Allocate organs to recipients • Manage hemodynamics – lab panels every 4-6 hours • Set OR time and make transportation arrangements Bill Snyder in Donation 101, Friday

33. 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.

34. Step 4 of Donation- Serology Phase • 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.

35. Step 4 of Donation- Serology Phase 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

36. Step 5 of Donation- Med/Soc Hx & Family Support • 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.

37. 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

38. 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.

39. 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

40. Organ Evaluation Echocardiogram Bronchoscopy Multiple chest x-rays Cardiac Cath Abdominal CT O2 Challenges Multiple ABG’s

41. 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

42. 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.

43. Step 6 of Donation-Organ Allocation Phase 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.

44. Recipients Step 6 of Donation-Organ Allocation Phase • 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

45. Step 7 of Donation-Manage hemodynamics Lab Values & Family Support (cont.) • 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.

46. V/S, UOP, CVP, gtts… Step 7 of Donation-Manage hemodynamics • Measured every hour • Use orders/recommendations given by the coordinator. • Rule of 100’s • SBP above 100 • PaO2 above 100 • UOP at 100ml/hr

47. Step 8 of Donation-OR Time & Transportation • 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.

48. Recovery Phase: Surgical Recovery of Organs Step 8 of Donation-OR Time & Transportation • 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)

49. 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

50. 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