Palliative Care Bereavement Support Guidelines Bridget Marshall CNS, Arohanui Hospice Maria Berrett Clinical Psychologist, Massey Health Psychology Services
Outline Background MidCentral Palliative Care Strategic Plan Development of MidCentral Guidelines and Toolkit Underlying Principles Guidelines and Toolkit Anticipated Benefits Implementation to date
Loss is not optional; it is part of the human condition. How we respond to it shapes who we are. (Neimeyer, 1997) Bereavement process, with feelings of grief and sadness is a natural part of life (Benkel et al, 2009) Living when a loved one has died, there is no detour round bereavement (Rabbi Grollman, 1995)
Context Bereavement Support Why is it Significant? We live in a death denying society Palliative Care does not end with the death of a person. Death can be the most significant and difficult life event family, whanau and close friends can experience. Family, whanau and close friends are the frontline of care Poor health outcomes if support is lacking
MDHB Palliative Care Strategic Plan 2012-2017 Te Korowai O Rongo THE CLOAK OF RONGO THE GUARDIAN OF PEACE AND TRANQUILLITY Vision All people with life limiting conditions live well and die well irrespective of their condition or care settings Goal 2: Support will be available and accessible for family and whānau
Review of Bereavement Support in MDHB Six questions What service do you offer? Who do you offer the service to? What do you offer within your service e.g. group counselling, face to face, resources only? How many people do you accept to your service? If you do not offer bereavement support who do you refer to? Are there any identified gaps? Findings Variable, limited, inequitable, those accessing specialist palliative care services have greatest support
What s Out There? No New Zealand guidelines but have Hospice NZ Standards UK - The National Institute for Health and Care Excellence (NICE) Bereavement Guidelines and information recognizes a three stage approach in relation to grief reactions (2004). Australia - The Australian Guidelines for Psychosocial and Bereavement Support (2012) Public Health Approach - most bereaved people have the strength and resilience within themselves, their families, and their existing communities to adjust to loss (Aoun et al 2012, and Bellamy et al, 2014, & Benkel et al, 2009, Guldin, 2014)
Process: Evidence and Expertise Evidence: Internationally < 5years Nationally < 10 years Grading system to rank evidence SIGN grading system Quality of evidence Expertise: Sought and Included Skylight Trust
Underlying Principles 1. Family and whānau matter 5. Assessment can clarify concerns 2. Most people are resilient 3. Bereavement support begins with preparation for dying 4. Cultural diversity needs to be reflected in bereavement support 6. Bereavement support requires flexibility 7. Workforce development and training is required 8. Continuous reflection is required
8 Guidelines in Three Areas... 1: Preparing for death 2: Bereavement support after death 3: Organisational responsibilities + Resource Toolkit
1. Preparing for Death 1: Know the person s family/whanau, friends and/or caregivers, and identify significant relationships and support systems. Toolkit: Use a Genogram ACP
1. Preparing for Death 2: Assess the bereavement support needs of family, whanau and friends. Toolkit: Be familiar with grief processes and common reactions including for children and adolescents Be familiar with Risk and Resilience factors for developing prolonged/complicated grief Consider possibility of using an appropriate validated assessment tool
1. Preparing for Death 3: Provide family, whanau, friends and caregivers with information regarding preparation for death. Toolkit: Types of information include brochures for children and adolescents, What to expect when someone is dying, Being prepared for death, Info re bereavement support services in MidCentral DHB (available in pamphlet form); useful websites
2. Support After Death 4: Interdisciplinary teams acknowledge death with family, whanau and friends. Toolkit: Condolence letter sample
2. Support After Death 5: Bereavement information is available to family, whanau and friends. Toolkit: Brochures: e.g. When you re Grieving Support Services and Resources
2. Support After Death 6: Reassessment of bereavement support needs is important. Toolkit: likely to occur with primary provider Distinguishing between grief and depression Validated assessment tools for complicated/prolonged grief
3. Organisational Responsibilities 7: Staff are supported through professional development training, education and resources. Toolkit: Seminars/Workshops Online Learning Modules
3. Organisational Responsibilities 8: Employers have a plan for bereaved staff. Toolkit: Managing Trauma Loss and Grief in the Workforce EAP How to be a Compassionate Employer
The Eight Guidelines Preparing for Death 1. Interdisciplinary teams know family/whanau/friends 2. Interdisciplinary teams assess the needs of family/whanau/friends 3. Interdisciplinary teams provide information about preparation for death Support After Death 4. Interdisciplinary teams acknowledge the death with family/whanau/friends 5. Bereavement information is made available to family/whanau/friends 6. Reassessment of support needs is Important Organisational Responsibility 7. Staff are supported through professional development training, education and resources 8. Employers have a plan for bereaved staff
Implementation Available on MidCentral DHB website www.midcentraldhb.govt.nz Launched November 2015 Integrated into: Arohanui Hospice using the Guidelines MDHB Palliative Care Quality Framework MidCentral Hospital Spiritual Advisory Group work plan New initiative within ARC Palliative Care Partnership
Anticipated Benefits Improvement in Communication Equitable access to information and support Raising awareness and normalising grief Promoting safe and effective care Information and resources available Increasing knowledge and skills Working together Promoting bereavement care as a wider responsibility Reducing poor health outcomes Promoting of resilience and autonomy
Working Group Member Title Organisation Sande Ramage Hospital Chaplain, MDHB Dr Simon Allan Director of Palliative Care, MDHB, Arohanui Hospice Kate McKenzie Reg. Social Worker, Family Support Team Leader and Bereavement Support Coordinator. Arohanui Hospice Maria Berrett Lee Hefford Senior Clinical Psychologist Health Conditions and Cancer Psychology Services Reg. Social Worker Palmerston North Hospital Massey University, Palmerston North MDHB Graham Black Mental Health Team Tararua, Central PHO Bridget Marshall Palliative Care Network Coordinator MDHB