Formation of Breakout Groups
Following our Nov 5 webinar, the Coalition held its 2020 Annual Meeting. The first few minutes were dedicated to reviewing Coalition business including a review of accomplishments, membership numbers and finances. Once Board President Ken Pituch concluded the business portion of the meeting, participants broke into 5 groups to discuss and plan for future actions in these five areas:
Facilitator of Work Group
Ken Pituch, MD –
Presentation #1 – DNR in Schools/Dawn Krause
Dawn updated the group on the efforts to move the DNR legislation forward in Michigan. The new legislation would accomplish three goals:
Rewrite the school code which would allow schools to honor the DNR for a child, provide continuity across different districts, and grant the schools immunity.
Change the DNR Act to include the pediatrics population.
Allow legal guardians (not only biological parents) to make DNR decisions for schools.
There is a strong commitment from the governor’s office, as well as bi-partisan support.
Presentation #2 – MSU senior student Samyukta Iyer provided an update on the Qualtrics survey/research questions sent to 61 hospice organizations. At least 8 hospice organizations will be willing to consider providing home based palliative care to children if financial barriers could be overcome.
Presentation #3 – MSU freshman student Joey Allen is hoping to build upon Samyukta’s project and work on a short but powerful documentary highlighting the patients’ stories.
Presentation #4 – Partners for Children (PFC) program manager Natalia Simon provided a brief background on the program, as well as updates and next steps in the sustainability strategy.
Presentation #5 – Becky Cienki of MHEF introduced Steve Fitton, former Medicaid Director, and current consultant to MHEF, who updated the group on his efforts to develop a value
proposition/framework/definitions of the policy to take a program similar to PFC statewide, within the existing Medicaid’s infrastructure.
John Person endorsed moving the ‘services upstream’ with the goal of better outcomes, as it is happening in the ‘adult hospice world’. He also informed the group of available $3.5M funding for Medicaid-eligible ‘room and board hospice’.
Jeanne Lewandowski had a comment for Steve and the group that the lessons and benefits of concurrent care should be taken into consideration when working with Medicaid and other insurers, to include those kids are “not quite ready for hospice”.
Steve Fitton expanded on the efforts to create a sustainable reimbursement/payment structure, and that he’s in the process of assembling the nationwide evidence that programs like PFC demonstrate value to payers, provide better outcomes for families and children, and improve services. It was reiterated that the work currently underway is highly collaborative thanks to CSHCS involvement.
Theresa wondered if the MSU students could help with some of the research that could be helpful (for instance, to explore the provider capacity in different parts of the state to offer PFC-like services, as it may be decreased the further one goes from the four major children’s hospitals).
Marcia updated the group on her efforts to catalog the various palliative care programs within the state of Michigan.
Put together a workgroup that would provide feedback on any policy drafts
Support and expand work with MSU Scholars
Review the catalog of palliative care programs (Marcia will email Dr. Pituch with more details)
Research provider capacity
Education and Telehealth Work Group Breakout Session Debrief
Facilitator of Work Group:
Jane Turner, MD –
Six people participated in the Education and Telehealth Breakout. We talked about opportunities to educate professionals and families about pediatric palliative care. We thought it would be helpful to have a clearinghouse of educational resources on the childpalliative.org website as a digital platform. We reviewed the website and noted that there are many resources already listed. We would like to see more educational resources, including announcements of upcoming educational webinars and other events, recordings of webinars, videos, books, links to organization. It would be helpful if the most useful resources were highlighted and annotated to help people choose among the many offerings.
Short Term Goal: Optimize the website
For educational resources on the website to be useful to people who are not already familiar with pediatric palliative care, we recommend the coalition administrators look into optimizing the search terms that bring the public to the website. We understand there are ways to embed these terms so the website pops up when someone searches for related terms (i.e. quality of life, children with medical complexity, chronic illness in children, pediatric end of life care).
Longer-Term Goal: Organize the resources tab on the website
The goal is to direct professionals to some resources and families to other resources (though anyone could access either library), prioritize and annotate the resources and establish a system for updating the resource lists.
Another idea is to investigate offerings of EPEC – Education in Palliative and End of Life Care. Perhaps a physician associated with the coalition could be trained by EPEC and could offer courses to pediatricians (generalists and subspecialists) in Michigan to extend access to principles of palliative care across the state. These doctors would not be specialty trained in palliative care but could provide more appropriate care if familiar with palliative care and comfortable taking care of children with life limiting conditions.
Co-Facilitators of Work Group
Abigail Waller -
Tara Derby -
The Bereavement Breakout Group was a success! There were 9 participants. The participants all seemed to really appreciate making connections with the other bereavement organizations. They were all keen to meet again in either December or January - we have a tentative day and time, just need to find a date. We are excited about the idea that CPCC could possibly host a monthly drop in ‘coffee hour’ on Zoom for bereaved parents. Representatives from the following organizations participated in the bereavement breakout discussion: Ele’s Place, Grieve Well, Gilda’s Club, Michael’s Place, Sandcastles, North Star- Arbor Hospice, Anchors Program-Hospice of Michigan, plus two bereaved parents.
The conversation focused around learning about the other bereavement organizations while making connections and discussing obstacles and strengths of providing bereavement services virtually.
The first goal of the group will be to continue to build partnerships with bereavement organizations around the state whose mission it is to provide bereavement services to families who have experienced the loss of a child (or young adult) from ANY cause. These partnerships and increased awareness of other bereavement services will help organizations better serve families. (A potential time for future meetings has been identified for Thursday afternoons at 4pm.)
As well as more bereavement organizations being involved in these discussions, it was felt that these meetings could be an opportunity to engage more bereaved parents to hear about their experiences with grief support and gaps in services.
We also discussed that providing virtual bereavement support opens the possibility of reaching more bereaved families. The CPCC could be a platform where bereaved parents could meet informally for a monthly virtual ‘coffee hour’ to connect with other bereaved families and also hear about bereavement support around the state. Different bereavement organizations could come to the ‘coffee hour’ to tell families about their organization. The CPCC could also be a platform to help bereaved families find meaning in the death of their child, for example having opportunities to tell their child’s story or be involved in fundraisers in their child’s memory.
Additionally, the CPCC could be a platform where other charities established by bereaved families could connect and promote their foundation.
If you are interested in being involved in future bereavement break out discussions, please email:
Abigail Waller: email@example.com.
Co-Facilitators of Work Group:
Gabrielle Tazzia –
Ann Fitzsimons – ann@here4U.net
The Respite Work Group discussed the key points from a Respite Update presentation that had been prepared for the breakout session. The discussion included:
A review of the background/mission/objectives of this Work Group, as established by prior members
A sharing out of a proposed definition for “Respite”
Gabrielle Tazzia sharing her respite story with Wesley and the rest of her family
Key Respite Work Group activities to-date
Discussion of future short- and longer-term goals, resulting in the following action steps:
Analyze/Summarize survey results from Community Mental Health Directors on respite benefits for children in Michigan
Conduct a similar survey with parents/families
Create a Family Advisory Council to provide a parent perspective on needed services like respite, as well as to inform, review and provide input into our surveys, resources
Share survey results and proposed action plans with both Advocacy and Education Coalition Work Groups to develop plans to:
Demonstrate the need for pediatric respite benefits in Michigan
Lobby/Advocate with the statewide Coalition for respite benefits for children in Michigan
Determine if education/training of the Coordinators of these benefits at CMH (and possibly CSHCS) is needed and if yes, in what format
Begin to explore the models of care for respite and assess what’s needed and workable; identify funding sources/donors
Brief exploration of some respite care models, including a discussion on how to potentially partner with North Star Reach Camp about using their facilities to offer respite time for a family
We will be scheduling a Work Group meeting in January with other interested members to continue our work
Have initiated contact with John Waller and his MSU Scholars to see if he can help identify students to assist with the data tabulation/charting/analysis of the CMH Directors data for reporting out to the Coalition and possible publication
Beginning work on revising CMH Directors survey to make adaptable for parents/families; would like to field it in early 2021
Gabrielle and Ann will be the points of contact for submitting updates to the Coalition newsletter
Facilitator of Work Group:
The following goals and responsible people were created at this session:
Trigger criteria for perinatal consults (to be compiled and cross referenced)
Cheri has a study ongoing at Sparrow
Linda will investigate what Beaumont does
Trish stated that U of M has set criteria
MI Mandate on Perinatal Palliative Care consults (Bill is in review)
Cheri to determine the status of the Bill
Possible advocacy to reenactment in the future
Funding for home perinatal consults or visits
Linda will investigate this issue
The groups will continue to meet and we'll keep you up-to-date with progress made. If you're interested in participating in any future meetings of these groups, please send am email to firstname.lastname@example.org.