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Children's Palliative Care Coalition
Our Members 
How We Began     Executive Committee      Guiding Principles

 Who We Are

Our Mission:
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 Michiga
n.

Our members
:
The Coalition was formed in the summer of 2016 by the leading children's hospitals and hospices of Michigan.
Full membership is open to professionals and institutions involved in pediatric palliative service to share their experience, access the expertise of others, help advance availability of care across the state, and to speak and advocate with a common voice to legislators, and government and commercial payers.
Associate membership is open to all other individuals and institutions in Michigan indirectly involved or otherwise interested in pediatric palliative care
.

Executive Committee
Kenneth Pituch, MD*     Jane Turner, MD*      Jeanne Lewandowski, MD       Nadia Tremonti, MD
Teri Turner, RN*      Bradd Hemker, MD*      Abigail Waller, LMSW*
John Person,  JD*     Richard Graham-Yooll

(
Board Members are noted with an asterisk)

 

How We Began
Representatives from the well-established coalitions of other Midwest states were invited to the Art for Charlie Conference in East Lansing, MI, in November, 2015. Following the conference a Work Group of interested attendees was formed to explore establishing a coalition for pediatric palliative care for Michigan, similar to those of the other states.

The Work Group became the Steering Committee for the Coalition which was established as a Michigan nonprofit corporation. The Committee adopted and adapted the Guiding Principles of the now defunct MAPPS (Michigan Alliance for Pediatric Palliative Care Services) which had been a forerunner of the Coalition.

The Art for Charlie Foundation undertook to fund the startup of the new coalition, handled its incorporation as a Michigan nonprofit and filed for 501(c) status with the IRS.  The members of the Steering Committee became the corporation's initial Executive Committee appointing the three directors required under Michigan law for the formation of a corporation.

The inaugural general meeting was held on November 11, 2016, when a regular board was elected and the first regular Executive Committee appointed.


Guiding Principles
:

  • Families and children living with life-limiting conditions are entitled to education about their disease, information about risks and benefits of treatment, and likely outcomes. This education and guidance is an obligation of the medical community.

  • Families and children living with life-limiting or chronically disabling conditions should be encouraged to become partners with the healthcare team in making decisions and in planning treatments for the child.

  • The extended family suffers, as well as the child, when a life threatening illness or a chronic disorder strikes our families. Patients, and their extended families, are entitled to compassionate and expert medical care, effective control of pain and physical complaints, and emotional and spiritual support.

  • Children should know what is happening to them. Whenever possible, even very young children should be involved in discussions about their conditions and have a voice in the decision-making process

  • Quality of life should be maintained at the highest possible level when death cannot be avoided, and when death occurs, it should be made peaceful and dignified.

  • Support for the family must be available after death.

Our CHildren