Don t Forget About Us! The Importance of Immediate Follow Up After a Loss Adrienne Daniels, LMSW Manager of Bereavement Services Tina Sullivan, LMSW, ACHP-SW Assistant Director of Community Support Services
About Our Hospice Average daily census: 325 Serve Monroe, Wayne and Seneca counties Provide services in the home, hospitals, comfort care homes, 11 bed hospice inpatient unit, nursing homes, assisted living facilities, group homes Interdisciplinary team includes physicians, nurse practitioners, nursing, social work, pastoral care, hospice volunteers, music therapy, bereavement services
About Our Bereavement Program Bereavement Team Manager-LMSW 2 Coordinators Community Specialist 22 Support Group Facilitators 14 Volunteers 2,391 deaths in 2016 10,084 contacts in 2016 (includes phone visits, support group attendance, face-to-face visits, and event attendance)
Why Bereavement Is So Important Provides closure to the hospice experience Reduces a sense of abandonment High quality, accessible and immediate care leads to improved post-loss adjustment 2 Affects a family s overall impression and satisfaction with ALL of hospice services Higher satisfaction with hospice and positive perception of support leads to increased coping after a loss 6
Comfort for the Brokenhearted Medical advancement 7 Less familial connectedness Less knowledge about dying and grieving Cultural fears Hospice can provide: Human connectedness/validation Education Safe haven to explore and express grief President Coolidge in mourning
This is what it looks and feels like when a patient is on hospice
This is what it looks and feels like for family members after their loved one dies
Immediate Needs after a Loss Financial storm Family tension Going back to the basics Emotional needs Process patient s illness, death and memorial Functioning through the fog Retelling the story helps the fog lift Accepting help offered Mental or physical health issues before a loss may be exacerbated after a loss 6
The Griever s Hierarchy of Needs Hospice can help by: Community resource referrals Trust and dependability (not dependency) Education Self-reflection Activities that facilitate mourning Volunteer opportunities
Goals of Bereavement Follow Up Short-term goal of hospice staff Call very quickly after the death Assess status of family members Process hospice experience Resource linkage Create a bridge to bereavement services Transition from hospice to bereavement Initial goals of the bereavement team Plant seeds and awareness of services Make a connection with the bereavement Build rapport
Beyond Kubler-Ross 4 The stages of grief have evolved since their introduction, and they have been very misunderstood over the past three decades They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grief is as individual as our lives. The five stages are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or goes in prescribed order. ~Dr. Elisabeth Kubler-Ross
The Six Needs of Mourning and The Slow Grief Movement 8 1. Acknowledge the reality of the death 2. Feel the pain of the loss 3. Remember the person who died 4. Develop a new self-identity 5. Search for meaning 6. Receive ongoing support from others ***This takes a lot of time and commitment***
Our Bereavement Timeline Bereavement calls by hospice staff made within 2 weeks Condolence card signed by everyone in IDG Bereavement calls made by bereavement care team typically within 3-5 weeks Newsletter mailed 3 times per year Invitations to Ceremonies of Remembrance/special events Anniversary card one year after patient s death
Where Should We Talk? Home Visit Most requested form of contact 5 Comfort level increases May not be able to drive due to grief Homebound for physical reasons Better assessment of the individual Visual cues to stimulate conversation Considerations: distractions, interruptions, becoming too casual, blurred boundaries
Office Visit Offsets anhedonia Practice being in a social situation Professional setting is a safe, sacred place Professional boundaries are maintained Counseling may be more effective There should be a dedicated private and soothing space for bereavement and caregiver counseling Consideration: distance for bereaved to travel
Redefining the Bereavement Team Grief begins long before a person signs on to hospice It takes a village to support a family Each team member has a role in the grief narrative Each can be a source of comfort and review According to FEBS comments, people do NOT differentiate between hospice and bereavement services.
Training Staff Assume that many staff members are not comfortable with grief Identify areas of discomfort Provide suggestions for questions Validation Can t fix the problem Answers are not necessary Listening is sometimes all a person needs Strong assessment skills are necessary At-risk family members are 5x more likely to access services than low-risk family members 4 Empathy is full presence to what s alive in a person at this moment. -John Cunningham
Caring for the Caregivers Bereavement department is available to provide support to prevent compassion fatigue for staff and hospice partners Find creative ways to support staff members Rituals Support groups Activities Mindfulness Strong supervision includes emotional support
Benefits to the Hospice Program Future referral source Fundraising opportunities Visibility in the community Cultural paradigm shifts in both end of life care and bereavement
Oh, the Places We ll Go! Emphasis on bereavement care and education lead to a stronger hospice program Creatively crafted variety of services tailor made to bereaved individuals 3 There is currently a lot of variability in scope, skill and intensity of services Need for clearer guidance Support research to establish empirically supported best practices 2 Reimbursement and payment solutions to support bereavement staff 2,1
References 1. Allen, J. Y., Haley, W. E., Small, B. J., Schonwetter, R. S., & McMillan, S. (2013). Bereavement among Hospice Caregivers of Cancer Patients One Year following Loss: Predictors of Grief, Complicated Grief and Symptoms of Depression. Journal of Palliative Medicine, 16(7), 745-751. 2. Barry, C. L., Carlson, M. D., Thompson, J. W., Schlesinger, M., McCorkle, R., Kasl, S. V., & Bradley, E. H. (2012, July). Caring for Grieving Family Members: Results From a National Hospice Survey. Medical Care, 50(7), 578-584. 3. Bereavement Services Should Cater to Families. (2009, April). Hospice Management Advisor 14(4), 47-48. Retrieved from https://search.proquest.com/docview/758873111?accountid=13567. 4. Doka, K.J, & Tucci, A.S. (2011). Beyond Kubler-Ross: New Perspectives on Death, Dying and Grief. Washington DC: Hospice Foundation of America. 5. Ghesquiere, A., Thomas, J., & Bruce, M. L. (2016). Utilization of Hospice Bereavement Support by At-Risk Family Members. American Journal of Hospice & Palliative Medicine, 33(2), 124-129. 6. Jones, B. W. (2010). Hospice Disease Types Which Indicate Greater Need for Bereavement Counseling. American Journal of Hospice & Palliative Medicine, 27(3), 187-190. 7. Lawrence, J.C. (2001). Bereavement Outcome Following Hospice Bereavement Services: A Utilization of a revision of the Grief Experience Inventory. (Doctoral dissertation, University of Buffalo) Proquest Dissertation and Theses Global. Retrieved from https://search.proquest.com/docview/252251068?accountid=13567. 8. Williams-Murphy, M. & Murphy, K. (2011). It s OK to Die. USA: The Authors and MKN, LLC. 9. Wolfelt, A.D. (2016). Counseling Skills for Companioning the Mourner: The Fundamentals of Effective Grief Counseling. Fort Collins, CO: Companion Press.