Advancing compassionate, comprehensive care of children with life-limiting conditions.

 


 

2020 Conference Webinar Series
Caring for the Caregivers

 

​The Children's Palliative Care Coalition of Michigan has hosted a statewide conference every November for the last 5 years. With the unfortunate circumstances we all find ourselves in these days due to Covid-19, we are not be able to put on a large group meeting in East Lansing this year. In its place, we are hosting a 4-part series of interactive webinars centered on the theme Caring for the Caregivers. The Webinar series began in *September, and will be held once each month for the remainder of 2020.

Our next webinar, held on Thursday, November 5, is "What Every Professional Should Hear - from a Parents Perspective, and will run from 3-4 pm.  We'll hear from a couple, both healthcare providers, on their experience taking care of their children, one of which is their 5 year-old son who has GRIN2A congenital mutation associated with complex seizure  disorder and extensive care needs. 

 

From 4-5 pm, the presentation will be followed by the annual meeting of the Coalition and breakout sessions with participant discussions:

  • Advocacy -- updates on efforts toward Medicaid and other insurance support for home-based care for children with medical complexity.  What is needed to make this really happen?

  • Education and Telehealth -- discussion of how the pandemic has jump-started telehealth and video visits along with what other opportunities are opening up.

  • Respite -- brief review of the October webinar from A Rosie Place, the respite center in South Bend, Indiana, followed by a discussion of what might be achievable in Michigan, and how to get there.

  • Bereavement -- discussion of what has changed because of the pandemic.  How can additional support be given to more parents?

  • Perinatal -- discussion on the current political climate, sharing resources statewide, and increasing awareness.

 

 

 

 

 

 

Dying in Your Mother's Arms

We're pleased to bring you this New York Times award winning documentary, "Dying in Your Mother's Arms". If losing a child to an illness is one of the worst things that can happen to a family, Dr. Nadia Tremonti, a palliative care physician in Detroit and CPCC Board Member, has made it her mission to make it better. It’s not easy. But she works to ensure that terminally ill children receive quality end-of-life care. Palliative care is sometimes misunderstood to shorten life expectancy, but it’s a method that increases quality of life, improves symptom burden and decreases medical costs. We follow Dr. Tremonti in the short documentary above as she works to make death less medical and more human. In the process she asks a critical question: When a child is terminally ill, how can we make the end of life a better one?

COVID 19 and Palliative Care

The current coronavirus pandemic has caused great disruption in normal life for all of us.  The executive board of the Children's Palliative Care Coalition of Michigan wishes continued health and strength to cope to all of our members, to our supporters and to your families as this uncertain future unfolds.  A high priority, especially health care providers, is that you follow the most up-to-date information and guidance on protecting yourselves and your loved ones and your colleagues. If your professional role is to help seriously ill children and their families, we hope that most of you can remain available to support those who need a sympathetic ear, a shoulder to cry on, or your thoughtful advice. Good sources of information are:

The Center for Disease Control

American Academy of Pediatrics

The State of Michigan Department of Health

National Coalition for Hospice and Palliative Care

The Center to Advance Palliative Care

Thanks for your continued support of the coalition's mission:  To help seriously ill children and their families.

Ken Pituch, MD

President,  Executive Board

Children's Palliative Care Coalition of Michigan

Helpful resources

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Learning that your child has a life-limiting illness can be devastating. It can be confusing and overwhelming to begin to understand what you may need medically and emotionally. Navigating the system along with your own feelings can be challenging and frustrating. Many parents want to seek out as much information as possible.

Check out our updated Resource Page

What we do

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We work to improve access to and quality of palliative care for children suffering life-limiting conditions. We aim to make it easier for families to find the guidance and support they need when navigating the complexities of caring for their child. More...

How you can help

Become a member, attend our events, or donate now to support our important work and strengthen our efforts to collaborate and improve pediatric palliative care services. More...

ANNOUNCEMENT:
A SAD LOSS TO OUR COMMUNITY

It is with deep sadness that we announce the passing of our co-founder and administrator, Richard Graham-Yooll.

Please read our tribute to Richard to find out more about who he was and what he did for our community.

© 2019. Child Palliative Care Coalition of Michigan