For Families - Now What?

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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. 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.

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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.

 

What is Pediatric Palliative Care?

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"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 

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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

 

 

Pediatric Palliative Care: Billing and Business Planning

CAPC has released a Pediatric Program Billing and Business Planning with new resources that address the unique needs of pediatric patients. The new Pediatric Palliative Care: Billing and Business Planning toolkit provides guidance for designing a business plan and budget, navigating concurrent hospice care, and utilizing effective billing practices. Many resources in this toolkit are open to all.

 

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. 

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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.

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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. 

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Courageous Parents Network - CPN is a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. Here you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children—and get through each moment

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​State of Michigan Resources

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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.

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Resources for Chronically Ill Children and their Caregivers

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A Kid Again Michigan provides year round Adventures for children with life threatening conditions and their families.  Children must be under the age of 20 and diagnosed with a life threatening condition to qualify.  Click here to enroll  in cost-free events for kids, and visit their Facebook page.

ArchAngels - ARCHANGELS is a national movement at platform that is reframing how caregivers are seen, honored, and supporter using a combination of data and stories.

Here4u - Located 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.

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. 

Mood Lifters Program - Mood Lifters is proud to present a mental wellness group supporting parents of children with complex medical needs. We recognize that these parents have limited time to take for themselves. However, past participants have said that this group has been a lifeline. Meetings are held remotely via Zoom so that parents can join from wherever they are. Due to generous sponsorship, this 15-week group is provided at no cost.

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. 

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 Michigan - Giving children with critical illness the gift of a life-changing gift today.

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 - Their 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 the great outdoors to its fullest. The sturdy, light-weight, all-terrain Buggies allow easy access to all types of outdoor 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 with WheelEEZ® Balloon Wheels.

Courageous Parents Network - A non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. Through videos, podcasts, printable guides, Guided Pathways, and blog—you will find wisdom from families and pediatric care providers to help you get through each moment. And be the best parent you can be.

Grief Support

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The Charlie Waller Legacy Fund - Provides financial assistance to families facing financial difficulties as a result of having a child with a life-limiting condition or who have had a child die of any cause. 

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 - A national site for grieving parents, grandparents, and siblings. A chapter is located in Saginaw.

Ele's Place -A Healing center for grieving children and teens, located in Lansing.

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In the News

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University of Michigan's Mott Named First Childkind Certified Hospital in State

“Being the first ChildKind certified hospital in Michigan is a public testament to the incredible pediatric pain care that Mott provides and once again makes us stand out amongst our peers,” chief nursing officer at Mott and Von Voigtlander Women’s Hospital, Kelly Baird-Cox, said in a statement.

“This exceptional achievement would not be possible without all of our teams working together to prevent and treat pediatric pain in new and innovative ways.”

 

Terminally Ill Pediatric Patients Need Greater Access to Advance Care Planning

In this recent Hospice News article about the need for pediatric patients to have access to advance care plans, Kristin James, executive director of the Greater Illinois Pediatric Palliative Care Coalition states that, “Talking to families about their options involves providers coming together and speaking the same language when it comes to advance care planning.”

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Education, Care Coordination Essential to Expanding Pediatric Palliative Care - Hospice News

“Children are a very important population that is underserved by palliative care,” according to Joe Rotella, M.D. Read more in this article about how, through education and the coordination of care, access to pediatric palliative and hospice care can be expanded for this population.

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Bereaved Parents, Hope, and Realism

Whether wishing for a cure, a return to normalcy, or mitigation of suffering, parents unanimously emphasized the ever-presence of hope as indispensable, not despite (or in opposition to) their realism but, rather, because of their prognostic awareness." This vital interplay of emotions is explored in the current issue of PEDIATRICS article linked here.

 

A Brief but Spectacular Take on End of Life Care for Children

Nurse Practitioner Deborah Fisher, who specializes in palliative care at Children’s National Hospital in Washington, D.C., shares her Brief But Spectacular take on an important subject that’s difficult to discuss in this PBS segment.

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Dying in Your Mother's Arms

Dr. Nadia Tremonti, Coalition Board Member, shares her work to make end of life better for families dealing with terminally ill children in this award winning documentary. 

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