Bridging the Divide: Symposium Recap
Dear all,
Thank you for your participation in the Bridging the Divide Symposium on May 5th, 2017. In this document, I have summarized some of the main ideas that we generated and included your specific suggestions in your own words. We hope that this event is a first step toward bringing together a diverse group of people with a shared commitment to promoting equity in cancer care for people affected by mental illness and their caregivers.
Key outcomes from our work together include:
§ Promoting increased communication and awareness of the broader stakeholder community invested in this issue
§ Building a patient/stakeholder advisory council
§ Submitting a grant proposal to develop a community network
§ Raising funds for an annual symposium on mental health and cancer
§ Educating psychiatry/psychology residents and trainees (400 plus state-wide), community mental health clinicians, and departments of radiation oncology
Each topic area includes my summary followed by participants’ own words. Please share your thoughts and distribute this document widely! Your feedback is crucial to addressing these issues. Please add your comments directly to this document and send it to , or follow the link to comment on the Google document: https://docs.google.com/document/d/1NhklQk4P-t133P2Q2u_a0MNYlEl0KOiJeECagcine6U/edit?usp=sharing
We promise to collect your comments and update the community in 3 months. Both documents will remain open until July 28th and we look forward to receiving your feedback. Thank you.
Sincerely,
Kelly Irwin on behalf of the symposium planning team
Thank you to our symposium participants!
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Alacrita Consulting, LLC.
American Cancer Society
BayCove Human Services
Beacon Health Strategies
Beth-Israel Deaconess Medical Center
Boston College School of Social Work
Brigham and Women's Hospital
Children's Hospital Boston
Commonwealth Care Alliance
Commonwealth Community Care
Dana-Farber Cancer Institute
Depression and Bipolar Support Alliance
Freedom Trail Clinic
Greater Boston Psychiatric Services
Lahey Health Behavioral Services
Lahey Oncology at Parkland Medical
Lemuel Shattuck Hospital
Massachusetts College of Pharmacy and Health Sciences
Massachusetts Department of Mental Health
Massachusetts General Cancer Center
Massachusetts General Psychiatry
McLean Hospital
National Alliance on Mental Illness – Massachusetts
Newton-Wellesley Hospital
North Suffolk Mental Health Association
South End Community Health Center
UMass Boston
Vinfen Corp
Winchester Hospital
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EXECUTIVE SUMMARY 1
The need, priorities for change, and proposed solutions
How can stakeholders do more?
PART 1: THEMES EMERGING FROM PATIENT NARRATIVES 2
Kelly’s Summary 2
Next steps 2
PART 2: CREATING OUR SHARED AGENDA FOR CHANGE 6
Group 1: Barriers to Care 6
Group 2: Caregiver Resilience 7
Group 3: End-of-Life Care and Serious Mental Illness 9
Group 4: Building Trust: Person-Centered Care 10
PART 3: IMPACT ON PARTICIPANTS 13
Next steps: How to Learn More, Upcoming Events, Ways to Contribute
Appendix: Symposium Agenda 17
EXECUTIVE SUMMARY
The Unmet Need: Individuals with serious mental illness die 15-30 years earlier than the general population, and cancer is the second leading cause of death. Patients with schizophrenia are more than twice as likely to die from many common cancers and less likely to receive timely, high quality cancer care. This disparity is understudied, and this group of patients is marginalized and voiceless. Our healthcare system separates cancer care from mental health care and the academic medical center from the community. To change the outcome, we need to do things differently. We need to bridge the divide.
Purpose: The symposium brought together diverse stakeholders: oncology and mental health clinicians, researchers, patients, families and community-based caregivers, advocates, and policy-makers, including >30 organizations and 150 participants: all invested in achieving equity in cancer care for people with mental illness.
Priorities for Change: Symposium participants identified core challenges at the human, patient, clinician, systems, and policy levels including mental health stigma, complex, patient needs, lack of education about mental health, barriers to communication, and anticipated challenges with dissemination. Work Groups included: barriers to care, caregiver resilience, end-of-life care, and person-centered care.
Proposed Solutions: Attendees shared that the dialogue changed due to the diverse participants and perspectives. Participants emphasized the need to continue to include patients and families and build a stakeholder community
§ Target education about mental health to decrease stigma and improve communication
§ Redefine multidisciplinary teams to engage community health workers, peers, and caregivers and integrate them in cancer care delivery
§ Develop a healthcare system that is integrated, proactive, flexible and person-centered
§ Decrease barriers to prevention and hospice care
§ Conduct research that demonstrates the benefits of innovative care models
§ Share the message widely with policy leaders
What Can Stakeholders Do?
§ Read on, let us know what you think, and share this document
§ Join the community network and let us know how you want to be involved
§ How? Email Kelly Irwin at or Amy Corveleyn at
§ Participate in educational trainings for mental health and oncology clinicians
Thank you to our sponsors:
The Massachusetts General Hospital Cancer Center and the Dana-Faber/Harvard Cancer Center
PART 1: THEMES EMERGING FROM PATIENT AND CAREGIVER STORIES
We began the afternoon by listening to a panel presentation of two patients who have been affected by mental illness and cancer, which included the voices of parents, oncologists, and community mental health clinicians.
We then asked you to reflect on your own experience and advise us:
What are the challenges that we need to discuss today to improve cancer care for patients affected by mental illness and their caregivers?
We need to:
1) Be advocates
2) Name mental health stigma and be aware of our own biases
3) Educate widely about mental health
4) Engage a diverse community
5) Decrease barriers to communication across a fragmented system
6) Design, study, and disseminate new models of care with a broad multidisciplinary team including peers and caregivers
7) Influence policy
8) Promote sustainability
WE NEED TO BE ADVOCATES
A panelist and mental health clinician summarized her perspective with words about her patient with schizophrenia and lung cancer:
WE NEED TO NAME STIGMA OUT LOUD
§ Be aware of our own biases
§ How do we treat each other with kindness and respect?
§ “Take more opportunity to name it out loud, and the fear that engenders in ourselves and our medical colleagues. That fear can alter what we know how to do.”- Mental health clinician
§ Be integrative: Don’t separate mental health from physical health, it’s both.
§ Name out loud why someone could be afraid to seek treatment to increase our understanding.
§ Self-Determination: Patient wishes vs. right to treatment
WE NEED TO EDUCATE ABOUT MENTAL HEALTH
§ Should there be a mandate to have mental health training when treating patients with cancer?
§ Without education, we can misinterpret behavior as threatening, when it’s a symptom.
§ Base-level of Education of the care team on the frontlines.
o There is a spectrum of mental illness
o We need basic education of all the caregivers regardless of discipline
o Education about palliative care
WE NEED TO DECREASE BARRIERS TO COMMUNICATION
§ Barriers between institutions and impact on communication
§ Danger of HIPAA (barrier to communication)
§ Fragmentation of system leads to losing the patient voice
§ To address complex patient needs: Substance use, homelessness
§ Barriers between institutions make it difficult for outside agencies to communicate
For Families and Legal Guardians (and Caregivers): We didn’t have the say we needed to have. The need for families to have rights.
WE NEED TO ENGAGE A DIVERSE COMMUNITY
§ Engage families and caregivers
§ Value of diversity of perspectives
§ How to support group home staff and community with rising incidence of cancer and mortality gap in people with serious mental illness?
§ Be attentive to listening collaboratively within and beyond the hospital
§ Communication and patience as critical skills.
WE NEED A NEW MODEL
§ Broaden the multidisciplinary team:
§ We need clinical and “non-clinical”- peer support specialists and a family support specialist---who can become supports to family and patient.
§ Involve patients in meetings with support
§ Support for guardianship to decrease financial barriers for lawyers
“Psychiatry the bedrock and foundation to be able to make decisions and support his wishes and best interests with cancer care” - Father and guardian speaking about son with bipolar disorder and rectal cancer
WE NEED POLICY CHANGE AND SUSTAINABILITY
§ The mandate for behavioral health integration.
§ Need for disciplined research to drive practice change
§ Workforce: The need for more “Kellys” (More psychiatrists and researchers dedicated to this work)
§ Coordinating, listening to all supporters. And fundraising.
§ Informed by disciplined research
PART 2: CREATING OUR SHARED AGENDA FOR CHANGE
Next, we divided into workgroups dedicated to 4 key topic areas co-led by facilitators with expertise in cancer care and mental health care. We were charged with identifying the key challenges within these topic areas and generating next steps. We were struck by the richness of the conversation, the innovative ideas, and the feedback that we can do more to include the perspectives of patients and community members. Ideas included individual change, clinician education (including focused teaching about our own implicit biases), and strategies to change the healthcare system and disseminate this work.
GROUP 1 │ BARRIERS TO CARE
CHALLENGES:
§ “Don’t like” to care for these patients (think about why)
§ “It’s hard to take care of these patients. We don’t like it. You feel terrible. Sometimes they smell.” Care takes more time.
§ Lack of resources on site, challenges of accessing services at different sites
§ Lack of funding for navigation
STRATEGIES:
§ Plan longer visits proactively
o Plan longer visits ahead of time
o Proactive review of case by psychiatry/social work
§ Engage mental health early
o Plan join visit with oncology
o Engage the multidisciplinary team early, an anticipatory process
§ Connect to someone who can come to the appointment (identify caregiver)
o Learn from the Department of Developmental Services model which emphasizes that each patient be accompanied to appointments
§ Reinstate patient care navigator to MGH North Shore
§ Partner with community organizations
§ Telephone follow-up supporting anticipatory guidance
§ Practical provider education: teach communication and how to connect to patient
§ “Magic App:” Know all members of the care team, document contact information/role
§ Identify patients early (flagging or screening electronic health record
PRIORITIES FOR CHANGE AND ACTION:
1. Educate clinicians to recognize biases and strengthen relationship building with patients with mental illness
a. Include patients and caregivers
b.
Focus on communication
2. Change the system to better address complex needs and logistical barriers. Work against experience of patients as challenging or difficult by modifying the system.
a. Proactively allocate more time for visits in the clinic schedule
b. Fund navigators & community health workers (the multi-disciplinary team)
c. Use technology proactively: an app with key members of the care and support team, identifying patients at cancer diagnosis
GROUP 2 │ CAREGIVER RESILIENCE
CHALLENGES:
§ Who is the caregiver?
o Roles and needs may be different
o Unique needs of children and parents with cancer
o Family involvement can be fractured
o Important to recognize community mental health and group home staff as caregivers
§ HIPAA and how to talk to caregivers (barriers to communication)
§ Increased caregiver burden with change in treatment types from infusion (IV medication) to oral medications in home
o Caregivers have more responsibility for adherence
§ When the team doesn’t know what’s happening at home
§ Access to providers/communication
§ Separating caregiving from guardianship
§ Lack of resources for caregivers with practical help: home health, transportation, equipment
§ Caregiver burnout (high burden)
§ Sad to uproot patients at the end of life if cannot stay in group home, loss of family at highly vulnerable time (link to EOL Group)
§ Need to address anticipatory grief and loss
STRATEGIES:
§ Create system of peer cross training to help remove siloed aspects of care
o Peer-to-peer support groups
o Support groups for caregivers (grouped with similar needs)
§ Give caregivers templates for leaves of absence
§ Help caregivers feel heard- by oncology and mental health teams
§ Target caregiver burnout: develop programs to identify and address diverse caregiver needs
o Mental health screening for caregivers
o Give caregivers permission/directive to practice self-care
o Separate check-in with caregivers at appointments, opportunity to ask questions
o Support groups for caregivers
o Provide written material for caregivers to review outside appointments
§ Ask about barriers to care at 1st visit with caregiver
§ Education
o Clear training, access to informational protocols
o Include other families/caregivers
o Use video models of how caregivers coped effectively with cancer care
§ Communication
o Train caregivers in digestible chunks about what to expect (phases of treatment)
o Email access to clinicians/providers
o Talk to patient vs. exclusively talking to caregiver
o Be aware of complexities of families
o Try weekly NP/RN call for caregivers
o Team meetings
§ Practical tools: E.G. Sample letters to employers for family leave
§ Community outreach
§ Integrate caregivers into the patient’s care team
o Caregivers present and part of care
o Have caregivers at appointments, caregivers know patient best
§ Need for earlier palliative care
o Utilize VNA or bridge palliative care nurses in the home or group home
o Palliative care early for patients with serious mental illness
PRIORITIES FOR CHANGE AND ACTION
1. Screen caregivers for mental health needs, as they may need mental health treatment
a. Systematically identify caregivers early
b. Broaden our definition of caregiver for this population
c. Learn more about caregivers’ needs related to end-of-life care
2. Improve communication and integrate caregivers into cancer care delivery
a. Consider resource-based barriers
b. Use flexible approaches tailored to caregiver’s needs and capacity
GROUP 3 │ END OF LIFE CARE and SERIOUS MENTAL ILLNESS
CHALLENGES:
§ Lack of control