End of life and palliative care for children, teenagers and young adults

End-of-Life and Palliative Care for Children, Teenagers and Young Adults in Grand Rapids, MI

Palliative and end-of-life care for infants, children, teenagers and young adults looks different than it does for adults. In Grand Rapids, Michigan, families can access specialized pediatric palliative care through major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, University of Michigan Health–West (Metro Health), and Mercy Health, as well as community resources like the Kent County Health Department and Grand Rapids Public Health.

Pediatric palliative care adds an extra layer of support that can begin at diagnosis and continue alongside treatments aimed at controlling or curing your child’s condition. Accepting palliative care does not mean giving up hope. The goal is to help your child and family live as fully and comfortably as possible, whatever the future holds.

What Is Pediatric Palliative Care?

Palliative care for children, teens and young adults focuses on:

Relieving symptoms such as pain, nausea, breathing problems and fatigue
Supporting emotional, social and spiritual needs
Helping families make complex medical decisions
Improving quality of life at every stage of illness

In Grand Rapids, pediatric palliative care teams may include:

Pediatricians and pediatric specialists (oncology, neurology, cardiology, etc.)
Palliative care physicians and nurse practitioners
Nurses and home health nurses
Social workers and counselors
Child life specialists and youth support workers
Chaplains or spiritual care providers
Physical, occupational and speech therapists
Bereavement and grief counselors

These teams work in hospitals (such as Helen DeVos Children’s Hospital at Corewell Health), clinics, hospices and in your home, depending on your child’s needs.

How Illness Can Change Over Time

The course of a life-limiting illness can be unpredictable. In West Michigan, families are often juggling school, work and weather-related challenges, especially during long, cold winters when it may be harder to travel for appointments.

An illness may:

Have ups and downs over many months or years
Remain stable for a while, then worsen suddenly
Progress quickly over days or weeks

Your child’s age, developmental stage, diagnosis, treatments and response to care will shape your family’s needs. Palliative care services in Grand Rapids are tailored to these changing needs, helping you adapt as circumstances shift.

Palliative Care for Teenagers and Young Adults

End-of-life and palliative care for teenagers and young adults (AYA) is different from care for younger children or older adults. Young people are often:

Developing independence from parents and caregivers
Planning for school, college, work or the future
Exploring identity, relationships and sexuality
More aware of what their diagnosis may mean for their life and future

Some Grand Rapids programs offer a dedicated Key Worker or care coordinator for teens and young adults to help:

Navigate appointments across different hospitals and clinics
Coordinate between pediatric and adult palliative care teams
Support school or college planning and communication
Connect with local or online support groups for AYA patients

Depending on age and situation, your teen or young adult may receive support from pediatric palliative care teams, adult palliative care services, or both during a transition period.

Palliative care is not just about physical symptoms. It supports the whole person and the whole family.

Physical Support

Managing pain, nausea, breathing difficulties and other symptoms
Adjusting medications and treatments to improve comfort
Planning for care during Michigan’s seasonal changes (for example, preventing respiratory infections during cold and flu season, or managing fatigue and dehydration during hot, humid summers)

Emotional and Mental Health Support

A diagnosis of a life-limiting illness can lead to:

Shock, disbelief or confusion
Numbness or emptiness
Feeling overwhelmed or helpless
Sadness, anxiety or panic
Anger or frustration
Guilt or hopelessness
Denial or difficulty accepting the diagnosis

Palliative care teams in Grand Rapids can connect you with:

Counselors, psychologists or psychiatrists
Child and adolescent therapists
Support groups for parents, siblings and young patients
Crisis and mental health resources if feelings become overwhelming

Families often face:

Financial stress and time off work
Transportation challenges (especially in winter)
School and education issues
Housing or home-care equipment needs

Social workers and care coordinators help with:

Insurance and benefits
Community resources via the Kent County Health Department and Grand Rapids Public Health
School accommodations and Individualized Education Programs (IEPs)
Home nursing, respite care and in-home support services

Spiritual and Cultural Support

Many families in Grand Rapids come from diverse religious and cultural backgrounds. Palliative care teams can:

Connect you with chaplains or faith leaders
Support spiritual questions, meaning-making and end-of-life rituals
Respect cultural preferences around decision-making and communication

Talking About Feelings and Getting Help

If you are a parent, guardian, sibling, teenager or young adult, it is important to seek help when emotions feel overwhelming.

Strategies You Can Explore With Your Palliative Care Team

Identifying specific worries and making a plan to address them
Learning coping skills (relaxation techniques, breathing exercises, journaling)
Creating routines that provide structure and predictability
Setting realistic expectations for school, work and social life
Planning for difficult conversations about prognosis or end-of-life wishes

There is no “right” way to feel. It takes time to absorb information, ask questions and decide what feels best for your child and family.

Communicating With Your Healthcare Team

You may be working with many services at once: hospitals, community clinics, disability services, school systems and palliative care providers. This can feel confusing and frustrating.

To make things easier:

Ask who your main point of contact or care coordinator is (often a nurse, social worker or palliative care provider).
Write down questions before appointments.
Ask your healthcare team to explain anything you do not understand—there are no silly or wrong questions.
Request a second opinion if you feel it would help you make decisions.
Be honest about what information you are ready to hear and when you need to slow down.

Make decisions that are right for you, your child and your family—not decisions based on what you think others expect.

Supporting Siblings

Siblings may:

Appear to be “coping” but feel very alone or scared
Take on extra responsibilities beyond their age
Feel jealous, guilty, angry or forgotten

Palliative care teams and local counselors can:

Provide age-appropriate information about the illness
Offer individual or family counseling
Help siblings stay connected with their sick brother or sister
Suggest activities to create shared memories

Even when life feels dominated by medical needs, setting aside time and attention for siblings is important for the whole family’s well-being.

Supporting Teenagers and Young Adults

Teenagers and young adults with a life-limiting illness often:

Have a clearer sense of the future and what they might miss
Worry about body image, appearance and independence
Want to maintain friendships and romantic relationships
Need privacy and control over certain decisions

Peer Support and Normalcy

Maintaining friendships can help life feel more “normal.” This can include:

In-person visits when medically safe
Online chats, gaming, video calls or social media
Youth or AYA cancer and chronic illness support groups (local or virtual)

Teens and young adults may want to talk about:

Fears, regrets and hopes
After-life beliefs or existential questions
Legacy projects (letters, videos, memory boxes)
Funeral or memorial preferences

They need adults who:

Are honest and respectful
Protect their privacy when appropriate
Involve them in decisions so they feel some control
Recognize that some younger teens may temporarily “regress” and need more hands-on care and comfort

Choosing Where Care Happens: Home, Hospital and Hospice

Deciding on the right type of care is not always easy. Many families in Grand Rapids move between home, hospital and sometimes hospice to meet changing needs.

Home-Based Palliative Care

Many children, teenagers and young adults are cared for at home. Families may choose home care because:

It feels more secure and familiar
Daily routines can be maintained more easily
Family, friends and neighbors can help with day-to-day care

Local palliative care providers can offer:

Nursing visits and symptom management
Counseling and social work support
Spiritual care
In some cases, complementary therapies such as music therapy or massage

Even if you choose home care, hospital care is always available if:

Symptoms become hard to manage at home
Your child needs procedures or intensive monitoring
You are exhausted or unable to safely provide care

You can change your mind and adjust your plan at any time.

Hospital Care in Grand Rapids

Hospitals in the Grand Rapids area—such as Helen DeVos Children’s Hospital (Corewell Health), Trinity Health Grand Rapids, Mercy Health, and U-M Health–West (Metro Health)—provide:

Pediatric and AYA inpatient care
Access to pediatric specialists and intensive care, if needed
Single rooms whenever possible to support privacy and family presence
Support from doctors, nurses, social workers, chaplains, youth support workers and palliative care teams

Hospital stays may be short (for symptom crises or procedures) or longer, depending on your child’s condition.

Hospice and Respite Care

Pediatric hospice care focuses on comfort and quality of life when a cure is not possible. While there is no large standalone pediatric hospice facility specific to Grand Rapids like some out-of-state programs, families can access:

Home hospice services that come to your home
Inpatient hospice or hospice units within local hospitals or partner facilities
Respite care programs through hospitals, hospice agencies and local nonprofits

Respite care gives caregivers a short-term break while ensuring the child or young person continues to receive skilled and compassionate care.

Your Role as Parent, Guardian or Carer

Parents and caregivers are the most important members of the care team. Many parents describe caring for a child with a life-limiting illness as a full-time job that affects:

Work and finances
Relationships and friendships
Community and faith involvement
Their own identity and sense of self

To support yourself:

Learn as much as you feel comfortable about your child’s condition and symptoms.
Ask for training on medications, equipment and emergency plans.
Keep a notebook or digital record of symptoms, questions and appointments.
Share caregiving tasks with trusted family and friends when possible.
Set aside time to create memories—photos, videos, special outings, or simple daily routines.

Looking After Your Own Health

Caring for someone you love can be emotionally and physically exhausting. It is important to:

Keep up with your own medical appointments when possible
Get enough rest, nutrition and movement
Take short breaks, even if only a few minutes at a time
Accept help when it is offered—there will be another time when you can support others

Seek professional help (counselor, therapist, spiritual care provider) if your feelings become too intense or difficult to manage alone.

When a Baby, Child, Teenager or Young Adult Dies

The death of a baby, child, teenager or young adult is often the most profound loss a family can experience. In Michigan, deaths may occur due to:

Miscarriage or stillbirth
Neonatal conditions or complications
Sudden unexpected death in infancy (SUDI)
Sudden infant death syndrome (SIDS)
Accidents, congenital conditions, cancer or other serious illnesses

Sometimes a medical examination or investigation is needed to understand why a death occurred, and in some cases, the death must be reported to the coroner.

Grief and Bereavement

Grief is a normal, individual process. People may experience:

Intense sadness or despair
Anger, guilt or blame
Fear for remaining children
Changes in sleep, appetite or concentration

Siblings’ grief is shaped by their age, understanding and previous life experiences. Teens and young adults may grieve differently than younger children.

Palliative care and bereavement services in Grand Rapids can offer:

Individual counseling for parents, siblings and extended family
Support groups (in person or online)
Guidance on talking to other children about death
Support with memorials, funerals and cultural or religious rituals

Local and Regional Resources in Grand Rapids, MI

While specific program names and phone numbers change over time, your healthcare team can connect you to:

Hospital-based palliative care programs at:
- Corewell Health / Helen DeVos Children’s Hospital
- Trinity Health Grand Rapids
- Mercy Health
- U-M Health–West (Metro Health)
Kent County Health Department and Grand Rapids Public Health for:
- Community health resources
- Immunizations and seasonal illness information (flu, RSV, COVID-19)
- Maternal and child health programs
Local hospice agencies that provide:
- Pediatric-appropriate home hospice care
- Respite services
- Bereavement programs
Mental health and counseling services for children, teens, young adults and families

Ask your child’s doctor, nurse, social worker or palliative care provider for up-to-date contact information and referrals.

Practical Tips for Families in Grand Rapids

Prepare for Michigan weather:
Plan ahead for winter storms, icy roads and power outages—keep extra medications, supplies and backup power for equipment if needed.
Use telehealth when available:
Many Grand Rapids providers offer virtual visits to reduce travel, especially during flu season or severe weather.
Stay connected with school:
Work with school counselors and teachers to plan for homebound instruction, reduced schedules or accommodations.
Document your questions and wishes:
Consider writing down your child’s or teen’s preferences about treatments, comfort measures and special wishes for time together.

Key Points

Pediatric and AYA palliative care in Grand Rapids focuses on helping children, teenagers, young adults and their families live as fully and comfortably as possible.
Teams are skilled in managing symptoms such as pain, nausea and breathing difficulties, and in supporting emotional, social and spiritual needs.
It is important to seek help if your feelings are overwhelming—there are no silly or wrong questions, and you can ask for more or less information as you are ready.
Ideally, one health professional will coordinate services for your family, helping you navigate hospitals, community services and home care.
Many parents find it helpful to live one day at a time, maintain some routine and remain flexible with plans, especially as needs change over time.

If your child, teenager or young adult has a life-limiting illness in Grand Rapids, MI, you are not alone. Talk with your healthcare team about palliative and end-of-life care options, local resources and the support available to help your family through every stage of this journey.

Grand Rapids Care

End of life and palliative care for children, teenagers and young adults