Children's Palliative Care
Coalition of Michigan
Our mission is to provide resources for, and to advocate for, medical professionals, volunteers and families caring for children with life-limiting illnesses, and to ensure the availability of compassionate, comprehensive care across the State of Michigan.
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Highlights and Resources from
CPCC's Annual Fall Virtual Conference
November 5, 2021
Keynote: Caregiver Intensity is Real, Can be Measured, and has Earned Credit
Alexandra Drane, Co-Founder and CEO of ARCHANGELS
ARCHANGELS is a national movement and platform that is reframing how caregivers are seen, honored, and supporter using a combination of data and stories. Caring for a loved one is an honor – it can also be intense, and that intensity is impacting our health in very real ways. Knowing your Intensity Score and whether you are “in the red”, “yellow”, or “green” is a simple and effective way to check in on yourself and communicate how you’re doing to others. Why is this important? Read more here:
Attendees of the CPCC Conference had the opportunity to take the Caregiver Intensity Index™ – 26 attendees took the survey to learn their Intensity Score and get connected to resources. Here is what the data shows:
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19% are ‘in the Red’ - This is considerably lower than the national average of 26% AND significantly lower than many ‘double duty’ populations. Double Duty populations (caregiving at work and at home) such as health care professionals, law enforcement, fire fighters, etc., can have rates of High Intensity up to 66% and on average, have a rate of around 30% High Intensity.
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The conference attendee population’s rate of High Intensity is consistent with what we often see in an employer setting with very supportive teams and managers and an advanced ‘caring for the caregiver’ culture.
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12% are ‘in the Green’. This almost double the national average of 7%. This is also consistent with employee groups who often describe work as ‘respite’.
Learn more about the research, data, and what resources are available for caregivers at www.archangels.me.
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It’s all Just too Much: Mental Health Support of Caregiving Parents - Moodlifters Program
Patricia Deldin, PhD, Shani Turke, MSPH, Teresa Kruse, Nikki Schueller
The presentation and panelist in this session reviewed the history of Mood Lifters and its adaptation in 2020 to focus on support of parents of children with serious complex conditions. Dr. Deldin noted the impressive, sustained improvements in mood and coping following participation in the 15-week virtual course. Program leaders and participants provided their personal experiences and benefits of the program. Mood Lifters—Palliative Care Parent Edition, will be offering another group in January.
For more information about Mood Lifters and how to register for the next session, Click here.
Other questions? contact Ken Pituch MD, kpituch@umich.edu, or info@mood-lifters.com
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And to Top it off, a Pandemic: Covid Impact on Children and Families
Abigail Waller, Christy Miller, Kelly Koerner
This session was facilitated by Abigail Waller, bereaved parent and clinical social worker. Abigail spoke briefly about how grievers need compassionate support and kindness from others to heal after a traumatic loss. In the best of times, society typically does a poor job at preparing us for loss and over the past 18 months, Covid has made it more challenging for the grieving to connect.
The organizations represented on the panel - GrieveWell and Ele’s Place - help adults and children to improve their support systems in grief. They make it possible for individuals to feel less abnormal in their feelings, more able to see that there is hope after a significant loss, and better able to integrate their loss without forgetting their loved ones. These two community organizations play an important role in assisting adults and children build resiliency in grief through connections with others. Read more here.
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Give Me a Break! Respite Initiatives and Opportunities
Tara Ferragamo, Ann Fitzsimons, Tara Derby
This session reviewed the state of respite services in Michigan and the barriers to providing short breaks to caregivers of our most complex and vulnerable children. Tara Ferragamo summarized her research into what is available in our state, and what makes it difficult to qualify for and to find respite providers. She highlighted what is happening in other parts of the country that might guide improvements in Michigan (link to both of her research below). Tara Derby recounted her experiences as a social worker in helping parents access respite, and Ann Fitzsimons reported on a recent survey of Community Mental Health Directors that reinforced the challenges.
Helpful Resources
Respite Care Facilities by the Numbers
State Programs that Include Respite Services for Medically Fragile Children
Links to relevant websites
Please Note: A Children’s Palliative Care Coalition working group is seeking volunteers who want to help examine the approaches to a better respite benefit, how to expand the respite provider workforce, and explore avenues toward philanthropic support. If you are interested in joining this working group, contact either Ann Fitzsimons or Ken Pituch
Does it Hurt? What will help? Pain Assessment and Treatment in Pediatric Palliative Care Multimodal Pain Care: Redefining Pain Assessment and Treatment in the Setting of the Opioid Epidemic
Dr. Keefer highlighted these areas in her presentation:
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Pain is a complex, deeply personal sensation that is affected by biologic, psychologic, and social factors. It is separate from the narrower physiologic concept of nociception as it is the process of sensation, transduction, perception, and modulation mixed with the individual’s life experiences. Due to these complexities as well as the inherent developmental challenges, pain assessment in pediatric palliative care should be multifactorial, including self-report, behavioral, and physiologic measures, and be focused on the pain’s impact on function.
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Multimodal pain management is the mainstay of treatment for all children in pain, however, some therapies may be challenging to receive and reimburse in certain populations. Management should consider non-pharmacologic therapies including psychologic, restorative, spiritual, and integrative strategies and secondary use of medications such as NSAIDs, regional and interventional anesthesia, adjuvant therapies.
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Opioids, a key therapy for children in pain, are complex to prescribe and require significant patient and family education on use, misuse, safety, including safety risks for the entire family.
Links to Relevant Websites:
Do No Harm - Understanding Implicit Bias and Creating Inclusive Care
In talking about implicit bias and the ways we are socialized from a very young age to believe things about certain identities, we were able as a group to challenge some of the messages we receive that don’t serve us well. The most compelling part of the session was hearing from Black patients and care-givers about their experiences not being taken seriously, not feeling welcome, or not seeing themselves represented in the Doctor and Nursing population. There were also comments from Nurses and Doctors in your community who admitted to unfair judgements placed on Black mothers or assumptions made about a Mother’s choices to work rather than stay by the bedside of her child. These racial, gender and class-based biases will keep arising unless we do the work of uncovering where they rest in our own beliefs and begin to resist them. One way of challenging these norms is to take the Harvard Implicit Bias test to identify your implicit assumptions:.
The session closed with a thoughtful and honest question and answer session that revealed just how complex issues of identity and inclusion are and how a “one and done” approach will never change systems of oppression. This is a life-long journey and being aware of how systems of power are reinforced through our daily practices is the first step in making changes. Consider whose voices are amplified, if there are cost based barriers to services, if there are programs that meet during the day and don’t offer childcare, if there are accessibility barriers that aren’t considered in the mode of delivery – when you look at programs and services through this lens, you are committing to changing the climate of your work culture. It was such an honor and a privilege to be part of this conference.
Check out these Suggested TED Talks and Books on Implicit Bias
Breakout Sessions
Support for Bereaved Parents and Families
Facilitators: Ayanna Eggleston, Toula Saratis and Jackie Morris
The conversation highlighted areas in need of increasing awareness for support, including:
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Early pregnancy and stillbirth bereavement support.
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Culturally considerate referrals.
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Grief support specific to the loss experience.
The discussion, rich in dialogue, focused on what we can do to provide resources to families and providers by region/county. .
The Chronic Complex Care Initiative for Michigan Children
Facilitators: Ken Pituch, MD, Marcia Franks, Theresa Christner, Bradd Hemker, MD, Nadia Tremonti, MD
Dr. Pituch reviewed the background and operations of the Partners for Children Program (PFC) from the Mott Children’s Hospital. This home and video visit support service has served over 100 children since August 2018. Children in the program have multiple specialists, high hospital utilization, and do not fit into an established comprehensive hospital program. In the first year, care for children in the program demonstrated significant savings to Medicaid expenditures, and high parental satisfaction. The program has been endorsed by stakeholders around the state. A proposal to leverage federal benefits to support medical homes for complex pediatric patients makes this an opportune time to advance a detailed outline that will provide a PFC-like program. Dr. Hemker of the Helen DeVos Children’s Hospital in Grand Rapids, and Dr. Tremont of Children’s Hospital of Michigan in Detroit are working at their own institutions in preparation for the proposal to become a defined benefit. Marcia Franks and Theresa Christner from Children’s Special Health Care Services explained the steps that need to be taken within their organization and Medicaid in order for the proposal to become a reality. Achieving a State-Wide Benefit for Children with Medical Complexity
Nursing Issues in Hospice and Palliative Care
Facilitators: Cheri Salazar, RN, CPNP, Maureen Giacomazza, RN
Clinical Issues
Discussion centered around how nurses continue to face barriers/resistance to suggestions of a palliative care consult for their patients. The idea of providing nurses with a script on how to navigate these discussions with medical colleagues was shared and discussed. Representatives from Mott Children’s Hospital are currently working with nurses in one of the ICU settings on the development of various scripts.
Action item – Once completed, today's facilitators will send out the script document to the participants of today’s discussion.
Education
Sparrow provides a 2-day End-of-Life-Nursing-Education-Consortium (ELNEC) program every November and is open to nurses from outside institutions as well as to social workers, child life specialists, and others who wish to attend. (Those who attend the ELNEC course are provided a certificate upon completion of the course which the participant can add to their CV). Michigan Medicine also provides ongoing Palliative Care educational programs every fall and spring, which are currently open only to staff of MM.
Action item – CPCC will provide notice of next year’s ELNEC program(s) with its members and others who may wish to attend.
Action item – A CPCC representative sits on the planning committee for Michigan Medicine’s Palliative Care educational program, and will ask if future programs can be opened up to nurses and others from outside institutions.
Community Collaboration
A representative from CSHC asked how to better partner with Palliative Care teams within the hospital. He currently has certain “go to” social workers to coordinate with, but is searching for additional ways to network and communicate with PC teams.
There is a great need for Palliative Care services in the Northern MI regions. CSHC services nurses are seeking assistance on how to get resources for Palliative to families in these areas.
Action Item - Create a work group through CPCC to collaborate with CSHC services to link palliative service resources for northern MI region until providers are available in this region.