© 2019. Child Palliative Care Coalition of Michigan

For Families

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. Many parents report feeling alone and isolated. Families often struggle in finding information or support.

We hope to provide you an avenue to connect with others, gain support and the information you may need to explore your treatment options.

When a child faces a chronic condition or a serious illness, families often feel as if their life has become a roller coaster ride. While each family is unique and everyone’s journey will be different, we understand that you and your family may face very difficult questions regarding your goals of care for your child and uncertain times. Palliative care is here to provide support along the journey, no matter your treatment decisions or what the outcome may be.

 

Pediatric Palliative Care

"Pediatric palliative care seeks to relieve symptoms associated with a serious medical condition or its treatment and to enhance the quality of life for children and their families, addressing their unique psychological, social and spiritual needs." Source: The Institute of Medicine (IOM)3 

Care is delivered through the collaborative efforts of an interdisciplinary team and serves as a critical link in care coordination, communication and helping the family to understand all the treatment goals and options…from diagnosis and throughout the course of a child’s treatment. The team works in collaboration with your child’s other health care providers and specialists, helping to provide seamless care coordination and communication, and aiding you in making informed choices about difficult medical decisions.

 

Care is customized for each patient and family, by allowing you to choose from a variety of available services, according to your needs. Through this continuing conversation, you and your child’s team can identify what your hopes and plans are for your child’s care, which will help the team deliver the care experience you hope for your child.

 

A team may consist of:

  • pediatric palliative care physicians

  • advanced practice nurses

  • case managers

  • social workers

  • bereavement coordinator

  • chaplain

  • child life specialists

  • expressive therapists/art, music, drama psychologists

  • pharmacists

  • nutritionist

  • trained volunteers

 

Useful links and organizations

The International Children's Palliative Care Network (ICPCN) is a worldwide network of individuals and agencies working with children and young people with life-limiting and life-threatening conditions. 

National Hospice and Palliative Care Organization (NHPCO) has published Standards of Practice for Pediatric Hospice and Palliative Care Programs, and provides a number of useful resources for families and caregivers.

The Center to Advance Palliative Care (CAPC) provides essential tools, training, technical assistance, and connection for all clinicians caring for people with serious illness. They have published guidance on designing a pediatric palliative care program. View the CAPC guidance.

STATE OF MICHIGAN RESOURCES

The Family Center for Children and Youth with Special Health Care Needs (Family Center). This parent-directed

section of the Childrens Special Health Care Services (CSHCS) helps shape CSHCS policies and procedures and help families navigate CSHCS. They also offer health resource information and emotional support to all Michigan

families of children with special needs. 1-800-359-3722, or email cshcsfc@michigan.gov.

  Conference scholarships: Families who live in Michigan can apply for a scholarship to help cover expenses for
one parent (with a child, birth to 26 years old) to attend a conference related to their child’s special need. A youth
(14-26 with special needs) can also apply to attend a conference related to their own diagnosis, condition or
treatment with a parent or on their own.

  Children with Special Needs (CSN) Fund provides support for children in Michigan with special health care
needs not available through any other funding source. The fund helps with the purchase of wheelchair vans,
equipment and services that promote optimal health, mobility, and development, enhancing the lives of children
and their families. Children under age 21 who are enrolled in or medically eligible to enroll in CSHCS are eligible
for funding from the CSN Fund. Call the Family Center at 1-800-359-3722, or email cshcsfc@michigan.gov for more information.

Resources for Chronically Ill Children

Here4ulocated in Farmington Hills, was established to embrace, educate and empower families of

babies and children with complex medical conditions.

Children's Healing Center - The Center, in Grand Rapids, offers an open environment for siblings and parents, where they can connect and share with others. We forge connections with and between families, breaking down the barriers of isolation that often form when coping with serious illnesses.

The Louie R. Merlo Foundation - "Gifting Life's Little Luxuries to Families with ​Severely Impaired Children. Created in memory of their son, Louie, who died courageously at 16 years old battling a series of severe physical and cognitive challenges from birth.

The Oldham Project offer fine portraits FREE of charge to any man, women or children in Lansing with any life-threatening illness, so that their memory may be kept alive for generations to come.

NorthStar Reach - Serious Fun Camp. The family camp, started in the spring of 2017, currently hosts approximately 1,000 children and family members annually, free of charge, during their year-round camp programming. Located in Pickney, MI, the camp was established for those kids unable to attend regular summer

camp due to serious medical conditions.

Kids Kicking Cancer in Southfield, offers an evidence-based innovative program that merges modern integrative medicine with traditional martial arts. Kids Kicking Cancer’s Heroes Circle program addresses the overwhelming needs of children with illness. 

The Jenna Kast Believe in Miracles Foundation's mission is to enrich the lives of Michigan children suffering from

life-threatening medical conditions by buying gifts and bringing joy and hope to their lives. Along with their gift,

each child receives a personalized trophy to acknowledge their courageous fight. 

The Rainbow Connection grants wishes to Michigan children with life-threatening medical conditions.

The Michigan Elks will assist any special needs child in Michigan who is unable to obtain assistance from other agencies or organizations and whose family’s income will not allow them to give the child the needed treatment. 

Olivia Kay Foundation was created to support and assist children (and their families) in the greater Lansing community and beyond who have severe multiple impairments, no matter what disease they may have.

Little Mary's Hospitality House - Little Mary’s Hospitality House offers a free vacation to families with children who are battling life-threatening or serious illnesses.  Families who have lost a child through illness and terminal adults are also welcome. Additionally, we have expanded our services to include various group retreats.

Make a Wish America - Giving children with critical illness the gift of a life-changing gift today.

Make a Wish Michigan

 

Coalition Against Pediatric Pain - an organization dedicated to supporting and uniting families affected by pediatric

pain. Also provides links to other organizations whose goal is spread joy and happiness to chronically ill kids.

UnitedHealthcare Children’s Foundation's Our mission is to improve children’s lives and help families gain access to the care they need through medical grants. 

Stepping Stones for Stella provides Buggies to children with disabilities to ensure they experience thegreat outdoors to its fullest. The sturdy, light-weight, all-terrain Buggies allow easy access to all types ofoutdoor environments that may require moving across sand, gravel, dirt, grass and even snow.Components are made of PVC pipe material, rubber and stainless steel and are equipped withWheelEEZ® Balloon Wheels

Grief support

 

Grievewell provides resources and support to adults in grief, as well as those who surround them, in order to build a community that promotes healthy grieving and healing. They envision a community in which individuals grieve well

so that they can lead a full life after loss.

Metro Detroit Share - Metro Detroit Share's mission is to provide support resources to families who endure the loss of a child during pregnancy or infancy.

The Compassionate Friends assists families toward the positive resolution of grief following the death of a child of any age and provides information to help others be supportive. 

Bereaved Parents of the USA is a national site for grieving parents, grandparents, and siblings. A chapter is located in Saginaw.
 

Ele's Place is a healing center for grieving children and teens, located in Lansing.

Past and Current Newsletters

October 2019

 

 
 
 

Watch some videos about the value of pediatric palliative care