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Approaching Grieving Families for Donations to the Cancer Center Stacy Fischer, MD DISCLOSURE Proud Cystic-Fibrosis Foundation Doesn't Need Your Charity AITKIN, MN—Cystic-fibrosis foundation A Dream To Breathe, which has refused to accept more than $250,000 in donations since 2001, announced Monday that it was continuing to make strides in fighting the rare respiratory disorder without any handouts from "self-righteous do-gooders." "In the past three months alone, thousands of people from all across the country have come out and asked us to take their money, insisting that we need it more than they do," said Development Director Joan Vandercamp in an urgent plea to Americans to take their pity elsewhere. "To you and countless others, we can only say: Who do we look like? The Salvation Army?" "When we need your help wiping this degenerative disorder that affects 30,000 Americans off the face of the earth, we'll let you know, okay?" she added Donor Identification & Motivation Money for Good II, Driving Dollars to the Highest Performing Nonprofits, 2011 July 20, 2015 5 Bereaved families have a connection July 20, 2015 6 Messaging content can be similar across income, age & gender Messaging delivery will be based upon best return July 20, 2015 7 July 20, 2015 8 Why do patients at the end of life participate in research? • a sense of legacy • assistance with the efforts of trusted scientists • contribution to the well-being of future patients Lessons learned from organ and tissue donation • Based on a BC survey of 73 kin of decedent organ donors (50% response rate) • Respondents feel something good and useful has come out of their loss • They are especially encouraged when they receive letters from grateful organ recipients First steps • Train all faculty and staff to recognize openings and opportunities with patients and families • Assure faculty and staff that they will not have to directly ask for donations-rather facilitate a referral to development staff-give them language for this. • “I understand you are thinking about ways you can honor ______. Would you be interested in talking to someone from our Cancer Center to talk about a legacy gift?” Respond to Emotion and Acknowledge Loss • Losses – – – – Dreams Hopes Functional abilities Future milestone events Having a clinician • Acknowledge loss can reassure loved ones that their loss was important and worth grieving. • Disregarding loss or failing to acknowledge it can send an inadvertent message that the patient's concerns are unimportant • There is a tendency among oncologists to respond to patient distress with more chemotherapy. Yet using the tools we have discussed above for responding empathetically, • It is possible to distinguish and deal with sadness, grief, anger, and worry without fixing these emotions • Both patients and clinicians are concerned about supporting patient hope, and in our opinion it is possible for clinicians to discuss hopes throughout the course of treatment and also to acknowledge hopes without necessarily endorsing them. Respond to emotion • N – Name the emotion: Example “It sounds like you are feeling very sad today” • U – Express understanding: I can understand why you might feel this way. • R – Respecting or praising: “I think you are very brave to be able to talk about this today” • S – Articulating Support : “I want you to know that I am here to listen to you when you are feeling this way” • E – Exploring the loved one’s emotional state : “Tell me more about how your grieving is making you feel hopeless.” “I wish” • Using “I wish” statements can be a useful tool to acknowledge what patients were hoping for and align and honor those hopes and also acknowledge that their hopes cannot be fulfilled • For example, an oncologist might say “I wish I had a kind of chemotherapy that could cure this metastatic cancer.” • How would you use an “I wish” statement in a conversation with bereaved family members AND NOT BUT Starting the conversation: Life is a palliative care consult • Start by learning about the person-not their cancer journey, not their illness, not even their passing – Tell me about ___________. – What was s/he like as a person? – For spouses: How did you meet? Tell me about your first date? – Tell me one of your favorite stories about _____. Elicit Values • What was most important to him/her in her life? • What beliefs did s/he have the helped define him/her as a person? • Use active listening : – What I am hearing is___________. • Identify how values may tie into your Cancer Center’s mission and programs Elicit Goals • Tell me about what you have thought about to honor your (relative). • Review values and tie them to specific programs or mission at your Cancer Center Communication Pitfalls: Things never to say • • • • • "I know how you feel." "It's part of God's plan." "Look at what you have to be thankful for." "He's in a better place now." "This is behind you now; it's time to move on with your life." • Statements that begin with "You should" or "You will." Role Playing • Scenario #1: G.R. is a 65 year old female who had recurrent metastatic breast cancer. She went through third line chemotherapy with poor response. She went into home hospice care and died peacefully with family at her bedside. You are talking to her husband about a gift for the Cancer Center. • Scenario #2: E.C. is a 67 year old male who had non-small cell lung cancer. He went through multiple lines of chemotherapy and several phase I trials. He was diagnosed with leptomenigeal spread of his cancer and was admitted to the hospital multiple times during his palliative whole brain radiation treatments. He was readmitted to hospital and had a cardiopulmonary arrest and was admitted to the ICU on a ventilator (breathing machine). Eventually the family decided to withdraw the vent and allow him a natural death. He died within 2 minutes of the ventilator stopping. You are talking to his eldest son following his death.