Grief and bereavement


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  • Communication is critical to allow the families to participate in the important decisions regarding a severely injured patient. They must know the extent of the supportive efforts, when brain death is being considered, and the differences between brain death, comatose state, and persistent vegetative state. If brain death is declared, the families require time to grieve and come to terms with the loss of their loved one. Studies also strongly support the concept of decoupling. Decoupling is the separation between the declaration of death and the counseling provided by LifeLink on donation. When families are able to take the initial steps towards accepting the loss, they are more likely to consider donation.
  • Provide up-to-date information in small amounts . The key is to make sure that facts about the patient’s current condition and the care plan are understood before providing additional information. It is especially critical to keep the family updated on any changes in clinical status that suggest the possibility of brain death. Minimize the number of staff members who talk to the family about brain death . This will help provide consistency in the messages conveyed, thereby enhancing the family’s understanding of their relative’s condition. It will also serve to strengthen the bonds of trust between the family and the healthcare team, which will be important should an organ donation request be required later. Set aside time for families to ask questions . It must be cautioned, however, that encouraging the family to ask questions is not a substitute for the healthcare team actively probing for areas of confusion on the part of the family. Due to their emotional distress, families cannot be expected to have organized their thoughts to formulate questions, nor can they always be aware of what they do not know. Choose words carefully when talking with the family about the patient’s condition . After brain death is declared, the healthcare team must declare with certainty that the patient is dead. It must be stated explicitly that brain death is not a comatose state, that the patient will not recover, and that—even though the heart is still beating and the body is warm—the person is dead. This information must be stated simply, without obscure medical terms, acronyms, or other jargon that serve to confuse most families. The care given to the brain dead patient should never be referred to as “life support.” Better terms are “artificial” or “mechanical support.”
  • Use visual aids to describe the brain injury and clarify the concept of brain death . Materials that are currently available include _________________ and the Brain Death Brochure (show brochure in envelope at this time & pass one around audience). As shown on this envelope, the Brain Death brochure is to be provided to families by the nurse or physician after the physician has declared brain death and discussed brain death with the family. Your LifeLink coordinator can provide you with one upon arrival to the hospital so it is important to notify LifeLink as soon as possible. This brochure does not bring up donation at all. It simply reinforces the nurse & physician’s explanation of brain death and helps the family in their understanding. Both of these education tools illustrate the anatomy of the brain, how traumatic injury can damage the brain, and how evidence of such damage can be obtained through standard medical tests. Using these or similar tools can help to ensure that the healthcare professional covers all essential information. Explain in simple terms what the medical equipment is designed to do . From the family’s perspective, the type of care that is given to someone who is brain dead in order to maintain the viability of the organs for transplantation may not seem very different from the care given to someone who is in a comatose state. To eliminate this potential source of confusion, staff must explain carefully what is being done and why. Because the brain dead patient will appear to be breathing, and because cardiac monitors will show what appears to be a normal heartbeat, it is imperative for the healthcare team to explain how the medical equipment makes this possible when the patient is dead. Do not speak to the patient once brain death has been declared . It is common for nurses and other staff to talk to patients who are unresponsive, which may continue even after brain death has been declared. Members of the healthcare team may need to remind one another to be more conscious of this habit so that the message to the family about the patient’s death is not undermined.
  • Grief and bereavement

    1. 1. Empowering Families in Helpless Times Elissa Berman, Director of Bereavement Services, LifeBanc Julie Roman, LifeBanc In-House-Coordinator, Cleveland Clinic
    2. 2. The Mission of LifeBanc <ul><li>“ LifeBanc saves and heals lives through organ and tissue donation for transplantation” </li></ul><ul><li>“ Pursuing a future when the decision to donate is an honor and everyone waiting receives a transplant” </li></ul>Empowering Families in Helpless Times
    3. 3. The Role of the Healthcare Professional <ul><li>Families are denied an opportunity for their loved one to be an organ donor unless a healthcare makes the call to Lifebanc </li></ul><ul><li>No one receives a lifesaving transplant unless a healthcare professional makes a call to Lifebanc </li></ul><ul><li>Recognize all patients who meet the clinical triggers that must be referred to Lifebanc-There are NO rule out criteria </li></ul>
    4. 4. The Importance of Timing <ul><li>A timely referral presents the Lifebanc FSL/IHC NOT to discuss donation but to provide family and hospital staff support in their time of need </li></ul>
    5. 5. Once a Potential Organ Donor is Identified, What Happens Next... <ul><li>The Lifebanc call center will obtain general information about the patient and determine registry status </li></ul><ul><li>LifeBanc will be on-site for further evaluation </li></ul><ul><li>LifeBanc will continue to follow the status of the patient and plan of care </li></ul><ul><li>When appropriate LifeBanc will collaboratively approach family for donation with the hospital staff </li></ul>
    6. 6. <ul><li>When is the right time to discuss organ donation with a family? </li></ul>
    7. 7. Paying attention -Knowing when it’s time to talk about donation <ul><li>There is no exact formula for when the right time to talk to a family </li></ul><ul><li>The potential organ donor has been pronounced brain dead </li></ul><ul><li>The Next-of-Kin has initiated a discussion about organ donation </li></ul><ul><li>The family of a potential donor has made the decision to withdraw care </li></ul>
    8. 8. Healthcare Professional’s Role <ul><li>Frequently inform the family of the prognosis of the patient </li></ul><ul><li>Prepare the family for the pronouncement of brain death </li></ul><ul><li>Nursing will continue to medically manage the patient to maintain hemodynamic stability </li></ul><ul><li>If diagnosed, inform the family of the death </li></ul>
    9. 9. Remember…………. <ul><li>Only LifeBanc personnel should initiate a discussion about organ donation with the potential donor family </li></ul>Empowering Families in Helpless Times
    10. 10. <ul><li>CMS and Joint Commission have set specific training requirements for designated requestors. </li></ul><ul><li>LifeBanc staff are trained accordingly to assist hospitals in complying with these guidelines. </li></ul><ul><li>Hospital policies and procedures. </li></ul>Empowering Families in Helpless Times Why is it so important for LifeBanc to initiate this conversation?
    11. 11. <ul><li>Potential donor families have many questions during end-of-life discussions. </li></ul><ul><li>LifeBanc staff are specialists who are able to answer any difficult questions that the family members may have about donation. </li></ul>Empowering Families in Helpless Times
    12. 12. The “Pre-approach Huddle” <ul><li>Prior to approaching a family for donation, LifeBanc staff discuss all circumstances surrounding the current situation. </li></ul><ul><li>Hospital staff are encouraged to participate. </li></ul>Empowering Families in Helpless Times
    13. 13. Preparing To Initiate a Discussion <ul><li>Collaboration with clinical staff, pastoral care, social work </li></ul><ul><li>Legal-next-of-kin </li></ul><ul><li>Registration status </li></ul><ul><li>Cultural and religious beliefs </li></ul><ul><li>Timeframe </li></ul><ul><li>Donor status </li></ul><ul><li>Environment </li></ul><ul><li>DCD vs. DNC </li></ul><ul><li>Support system </li></ul>Empowering Families in Helpless Times
    14. 14. Family Communication <ul><li>Extent of supportive efforts </li></ul><ul><li>Prognosis and consideration of brain death </li></ul><ul><li>Brain death vs. comatose state vs. persistent vegetative state </li></ul><ul><li>Time to grieve and accept loss of patient </li></ul><ul><li>Donation counseling by OPO/hospital staff as a team effort </li></ul>
    15. 15. Elements of Family Communication <ul><li>Provide up-to-date information in small amounts </li></ul><ul><li>Minimize the number of staff members who talk to the family about brain death </li></ul><ul><li>Set aside time for families to ask questions </li></ul><ul><li>Choose words carefully when talking with the family about the patient’s condition </li></ul>
    16. 16. Elements of Family Communication (continued) <ul><li>Use visual aids to describe the brain injury and clarify the concept of brain death </li></ul><ul><li>Explain in simple terms what the medical equipment is designed to do </li></ul><ul><li>Generally, the OPO will not bring up the subject of organ donation until the family fully understands that their loved one is dead and has had enough time to absorb their loss. </li></ul>
    17. 17. <ul><li>We provide onsite crisis intervention for families experiencing unexpected traumatic death. </li></ul><ul><li>We work collaboratively with hospital staff with brain death testing. </li></ul><ul><li>We facilitate end of life discussions and the informed consent process. </li></ul>What Does Our Support Look Like?
    18. 18. <ul><li>Help families understand their loved one’s prognosis </li></ul><ul><li>Discuss first person consent for registered donors </li></ul><ul><li>Discuss donation options for those not listed on the registry </li></ul><ul><li>Brain death donation </li></ul><ul><li>Donation after Cardiac Death (DCD) donation </li></ul><ul><li>Timelines for the donation process </li></ul><ul><li>Directed donation </li></ul>What Does Our Support Look Like?
    19. 19. <ul><li>Research </li></ul><ul><li>Victim’s assistance and other social services </li></ul><ul><li>Funeral Plans </li></ul><ul><li>Coroner issues </li></ul><ul><li>Completion of required consent/disclosure form and the medical social history interview </li></ul>What Does Our Support Look Like?
    20. 20. <ul><li>Stay with the family until they leave the hospital </li></ul><ul><li>Provide valuable resource information </li></ul><ul><li>Follow up with family </li></ul><ul><li>Provide Memory Box and Donor Proclamation </li></ul>What Does Our Support Look Like?
    21. 21. <ul><li>Need to process this disequilibrating life transition </li></ul><ul><li>Need to grieve, not just the loss, but the changed life of the survivor </li></ul><ul><li>Need to reestablish a life worthy of passionate reinvestment </li></ul><ul><li>Disruption of continuity of the fabric of a life woven together with that of another. </li></ul><ul><li>Recruitment of support for a recognizable self. </li></ul><ul><li>Acknowledgement of alternative pathways through loss, some straightforward and rapid, others tortuous and extended. </li></ul>Voices of Bereavement from Donor Families
    22. 22. <ul><li>The tension between letting go and holding on </li></ul><ul><li>Bereavement is an ambivalent emotion </li></ul><ul><li>Longing is at the heart of grief </li></ul><ul><li>Some describe it as a “homesickness for presence” or “living in a universe with a hole in the shape of our loved one.” </li></ul><ul><li>Losses are the shadow of all possessions, because to have someone means we will lose someone. </li></ul><ul><li>We are wired for attachment in a world of importance </li></ul><ul><li>Loss can create a continuing intimate bond with those we have loved and lost . </li></ul>Themes Found in Loss Are the Themes in Family Support
    23. 23. <ul><li>Loss is universal </li></ul><ul><li>Loss is inevitable </li></ul><ul><li>Reactions to loss are personal </li></ul><ul><li>Reactions to loss are learned </li></ul><ul><li>The foundation for your current thoughts about and reactions to loss experiences were established in your own childhood. </li></ul>Themes of Loss Continued
    24. 24. <ul><li>When traumatic circumstances surround the sudden death of a loved one, or when the bereaved was also involved as a victim in the event or witnessed the death, the bereaved must cope with both trauma and grief. </li></ul><ul><li>Grieving may initially be blocked </li></ul><ul><li>Trauma overrides the ability to mourn and while experiencing both, the bereaved person may find emotions and symptoms are intensified </li></ul><ul><li>Trauma and grief can be experienced simultaneously or separately and this may cause distress and confusion to that person and to those around him/her as s/he struggles to understand complex and sometimes frightening emotions. </li></ul>Themes of Loss Inform Bereavement Services
    25. 25. <ul><li>Finality of grief acknowledged </li></ul><ul><li>Bittersweet emotions are accessible and changing </li></ul><ul><li>Mental representation of deceased is revised </li></ul><ul><li>Coherent narrative of loss is formulated </li></ul><ul><li>Life goals are redefined. </li></ul><ul><li>Understanding that it is about the transformation of a relationship not the relinquishing of a relationship . </li></ul>Continued Support Results in Integrated Grief
    26. 26. <ul><li>Bereavement Department receives reports about families who will be in our care. </li></ul><ul><li>Each week I sit in case review to hear organ cases, tissue cases and to hear how our Donor Referral Coordinators (DRC’s) dealt with their phone approaches. </li></ul><ul><li>If they need support immediately they call the Bereavement Department and we follow up immediately. </li></ul><ul><li>This sets the stage for a two year relationship with the Lifebanc Bereavement Department for those who had loved ones where the donation resulted in transplantation. </li></ul><ul><li>For those that were unproductive after consent, we follow them for one year. </li></ul>Connecting to the Bereavement Department
    27. 27. <ul><li>Calls made to families 1,3, and 12 months after their loss. </li></ul><ul><li>In 2009 we spoke with over 2300 donor family members. </li></ul><ul><li>We send letters with educational and support materials at 1,3,6,9,12,15,18 and 24 months after their loss. </li></ul><ul><li>In 2009 we sent out 4482 letters with resources to the 1165 families we served that year. </li></ul><ul><li>If we are unable to reach our families, each gets a handwritten card, with our business card, inviting them to call or email if they want to connect with us. </li></ul><ul><li>We sent out 789 notes in 2009. </li></ul>Holistic and Comprehensive Family Care
    28. 28. <ul><li>Free on site grief counseling is offered to all donor families by a Licensed Professional Clinical Counselor. </li></ul><ul><li>Grief support groups are facilitated on site at Lifebanc, in Akron and in Strongsville by a Licensed Professional Clinical Counselor. </li></ul>Compassionate Care is Professional Care
    29. 29. Reaching out By Mail We Sent Out 4482 Letters of Support and Resources in 2009 We send personalized letters to our families at regular intervals: one, three, six, nine, twelve, fifteen, eighteen and twenty four months. For those who want to keep in touch by email we honor that as well. We sent 145 emails to donor families regarding services and support in 2009. One Month Characteristics of Grief General grief and bereavement websites Mourner’s Rights Correspondence guidelines Three Months Finding the “new normal.” Counseling services in LifeBanc’s service area Loss specific websites Specific loss information inserted for each family Holistic and Comprehensive Family Care
    30. 30. <ul><li>Six Month </li></ul><ul><li>Contradictory feelings during grief – moving towards acceptance </li></ul><ul><li>Grief and Bereavement booklist </li></ul><ul><li>“ Living with Loss” magazine </li></ul><ul><li>“ Give and Grieve” newsletter </li></ul><ul><li>Nine Month </li></ul><ul><li>A understanding of hope </li></ul><ul><li>Self-Care: Wellness Wheel </li></ul><ul><li>“ Are You Taking Care of Yourself?” </li></ul><ul><li>Next of kin survey </li></ul><ul><li>12 month </li></ul><ul><li>Ritual and anniversary </li></ul><ul><li>Ritual: Mark the Anniversary - Resource </li></ul><ul><li>Quilt brochure to donor families </li></ul>Holistic and Comprehensive Family Care
    31. 31. Fifteen Months Loss and opportunity for meaning making LifeBanc Volunteer Brochure Eighteen Months Living in a “get over it” society Tools for Reflection on the Impact of Grief on my Life Twenty Four Months Are you stronger in the broken places or are you in need of more support? Resource on the signs of complicated grief Holiday Mailing with resources on coping during the holidays Holistic and Comprehensive Family Care
    32. 32. The Gift of Life Memorial Program
    33. 33. <ul><li>Outer Ziploc bag -to keep contents clean </li></ul><ul><li>Letter to the Funeral Director explaining the program contents (may be removed when presented to a donor family in person) </li></ul><ul><li>Outer Box -contains LifeBanc contact info and folds flat with magnetic closure </li></ul><ul><li>Memory Box -Has room for two photos </li></ul><ul><li>Donor Medal -Can be placed in a stand or mounted to a grave marker/headstone </li></ul><ul><li>Donor Recognition Certificate/Proclamation-personalized for each donor and printed on parchment paper </li></ul><ul><li>Certificate Presentation Folder </li></ul><ul><li>LifeBanc Bereavement Department Brochure </li></ul>Standard Kit Contents
    34. 34. <ul><li>Upon Family Request </li></ul><ul><li>Lock of hair/infant footprint </li></ul><ul><li>Donor Registration Brochures (10) </li></ul><ul><li>Remember Me Poem Bookmarks (10) </li></ul><ul><li>Donate Life Pins (10) </li></ul><ul><li>Donate Life Green Bracelets (10) </li></ul><ul><li>Memorial Contribution Envelopes (10) </li></ul><ul><li>***Requests for additional resources will be accommodated within reason </li></ul>Additional Contents
    35. 35. <ul><li>Correspondence </li></ul><ul><li>414 organ donor families and recipients </li></ul><ul><li>117 tissue donor and recipient families. </li></ul><ul><li>Recipient Updates </li></ul><ul><li>117 recipient updates to donor families in our service area </li></ul><ul><li>109 recipient updates that were to other OPO’s. </li></ul><ul><li>Counseling </li></ul><ul><li>Grief counseling at LifeBanc, free of charge to our donor families I </li></ul><ul><li>6 week grief support groups in our LifeBanc service area </li></ul><ul><li>Grief Education Workshops </li></ul><ul><li>Planning quarterly grief seminars in our new building </li></ul><ul><li>Annual Donor Memorial Service </li></ul><ul><li>2009 – 650 people attended </li></ul><ul><li>Active Donor Family Council </li></ul>Additional Bereavement Care
    36. 36. <ul><li>Hospitals as Partners </li></ul><ul><li>The Bereavement Department speaks at Donor Council Meetings </li></ul><ul><li>Teach CEU Lunch and Learns at hospital ICU’s </li></ul><ul><li>Presented organ collaborative in 2009 and will present again in 2010 and will do so at our tissue collaborative. </li></ul><ul><li>Collaborate with Hospital Development in educating nursing staff on role of Family Support Liaisons. </li></ul><ul><li>Collaborate with Hospital Development in educating nursing staff on working with families during the DCD process. </li></ul><ul><li>Attend Donor Hospital Flag Raisings – Offer words of comfort </li></ul>Collaboration is The Key to Legitimacy and Success
    37. 37. <ul><li>LifeBanc Staff as Partners </li></ul><ul><li>Engage staff in training regarding grief and bereavement issues. I.e.; Recognizing suicidal ideation for the DRC’s, education about self care and compassion fatigue. </li></ul><ul><li>Work hand in hand with clinical staff in discussing serology's that prevent donation and other MRO’s. </li></ul><ul><li>Work in collaboration with the finance department to field billing questions and calm families when dealing with the stress of grief and money. </li></ul>Collaboration is The Key to Legitimacy and Success
    38. 38. <ul><li>Provide information to outreach and education about multi cultural issues regarding grief and bereavement. </li></ul><ul><li>Serve on Diversity Council </li></ul><ul><li>Serve on Wellness Committee </li></ul><ul><li>Consult with Human Resources when exploring the needs staff have for an EAP provider. </li></ul>Collaboration is The Key to Legitimacy and Success