1. Empowering Families in Helpless Times Elissa Berman, Director of Bereavement Services, LifeBanc Julie Roman, LifeBanc In-House-Coordinator, Cleveland Clinic
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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
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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
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.
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