Do you remember why we started the Children’s Hospice and Palliative Care Coalition?

Today, we are asking you to support our continued efforts on behalf of seriously ill children and their families by becoming an official member of CHPCC.

Become a member. Together, we can make a difference.

You will receive a membership card and certificate along with these and other benefits

Membership Benefits include:

• Participating in our annual legislative day at the state capitol
• Timely updates from Sacramento about children’s healthcare issues
• Networking through quarterly conference calls on topics related to innovations within pediatric palliative care
• Notices about job opportunities in children’s healthcare and hospice
• Access to feedback from our Partnership for Parents Advisory Council
• Discounted registration fees for selected CHPCC programs, events, and materials
• Password protected online educational training through BES
• Web acknowledgement of your membership through childrenshospice.org

And, with your help, CHPCC succeeded! Our accomplishments include:

➢ Enactment and implementation of the Nick Snow Children’s Hospice & Palliative Care Act of 2006.

➢ Development of the new Children’s Hospice and Palliative Care Benefit in collaboration with California’s Department of HealthCare Services, to increase hospice and palliative services for an estimated 17,000 of California’s children.

➢ Launch of the award-winning Partnership for Children, a community-based care coordination program recently institutionalized as a Department of Healthcare Services endorsed model in California.

➢ Development and launch of the Benefit Education Support and Training in Pediatrics program, or BEST in Pediatrics. a statewide educational initiative designed to ensure maximum utilization of California’s new Pediatric Palliative Care Benefit.

➢ Created the first and only bilingual web resource addressing the unique needs of parents caring for a seriously ill child. (www.partnershipforparents.org).

➢ Established a Family Advisory Council with an expertise in palliative care to support and advise CHPCC’s advocacy efforts.

Click here to become a member now.

Angel, our inspiration

Diagnosed at age 12 with osteosarcoma, an aggressive bone cancer, Angel, an avid soccer player, went from spending his days on the field to a hospital bed. After several months of treatment, Angel’s doctors, explaining that there was nothing else to be done, sent the distraught family home—a community 70 miles from the nearest children’s hospital. Given that they had no car or home care, Angel’s parents were told to call 911 and to go to the local hospital if his pain became too intense.

At home, Angel’s condition worsened rapidly, but his doctor was unable to refer him to hospice since his family didn’t want to give up hope that a clinical trial might cure his disease. Three days later, Angel was rushed to the local hospital’s crowded emergency room. The staff was unfamiliar with Angel’s treatment protocols and unsure of how to proceed. Hours passed. Angel’s mother begged the staff to do something, anything to help. A decision was made to take Angel upstairs to a hospital room. But on the way—gripping his mother’s hand and in pain—Angel died. His father and siblings sat downstairs in the lobby, unaware and unable to say goodbye. Even now years later, his parents struggle to find peace, haunted by the memory of their oldest son’s final moments in life.

In 2001, we founded the Children’s Hospice and Palliative Care Coalition (CHPCC) because we discovered that there were thousands of devastating stories like Angel’s—stories that broke our hearts and fueled our ambition. We reached out to you, and you listened. Together, we undertook the mantle of change and vowed to speak loudly and clearly on behalf of children who are too little and too sick to speak for themselves.

We often mean well by saying “call me if you need anything,” but the reality is that it is best to offer something specific you can and will do and then just do it. This is especially true when a family is dealing with a serious illness or a death. There are tangible things you can do to help ease their burden…

• Make a meal that is easy to reheat
• Invite siblings over to your home to play so mom and dad can have some time to themselves
• Run errands
• Pick kids up from school or drive them to their daily activities
• Make sure that the house is stocked with the kids’ favorite cereal or other familiar comfort foods
• Do yard work
• Clean the house
• Mow the lawn
• Do the laundry
• Honor each family member’s grieving experience and expression – recognizing the differences is a true gift.
• Offer to go with the parents to help plan or hold their hand while they make arrangements for the memorial service and/or funeral
• Offer to assist the family in preserving mementos. Let the family set the timetable for this as they need to discover the right timing for themselves
• Send a note or a letter (see Those Difficult Cards & Letters, page 29)
• Remember them during holidays and birthdays, mother’s/father’s days. Notes and letters that continue over time are priceless. Don’t worry about “reminding them of their child” they are already remembering and often grieving for their child during these milestones and will be comforted to know that their child is remembered by others.

What do you say when a child, a friend, a loved one dies? Words seem so inadequate – we are often literally speechless. After all what’s the point, we can’t say or do anything to help or can we?

DO listen, listen, listen. Remember every grief needs at least a thousand tellings or more.

DO read an article or go online and get some information about grief to help you better understand what your friend is going through.

DO say the name of the child or person who died out loud – the grieving often find it comforting to hear and say the name of their loved one aloud and know that they are remembered and missed.

DO be patient. Grief has no timeline – respect each person’s journey

DO let the person guide you. For example, “I have such a wonderful memory of (person’s name). Would you like me to share it now or another time?”

DO become informed about your friend’s cultural and/or ethnic beliefs, rituals, customs related to death and bereavement, so that you are better able to provide appropriate support.

DO reminisce and share stories and memories

DO remember that grief is a process. We visit and revisit the thoughts, emotions over an extended period of time. We never get over grief. We are forever changed by the death (or by the loss).

DO stay away from “should’s” —- for example “You should go out more, try to eat more or less, go to church more, read this book, come over for lunch, etc.

DON’T avoid those who are grieving. It is important to them and to you that you express your empathy and sympathy rather than simply doing nothing out of your own distress and discomfort.

DON’T be afraid of silence. The ability to jbe present and quiet with your friend can provide comfort.

DON’T say “I understand” or “I understand how you feel.” This tends to shut the person down. Encourage conversation instead. We understand our own grief journey and by listening we will understand another’s.

DON’T let the fear of saying the wrong thing stop you from supporting your friend.

DON’T say “You shouldn’t feel that way.” We sometimes say this when a person talks about guilt or anger. Remember it is important to listen even though it may not make sense to you.

DON’T say “Put it behind you” or “It’s time to get on with your life.” This is easier said than done. Your friend may wish that they could return to life before the loss, yet it takes time to heal.

DON’T try to fix the pain. It is hard to be with someone in grief and so we have a tendency to want to fix it, take it away, freeze up, or be frightened of their big feelings. You will be offering your friend a huge heart gift by listening without judgment or attempting to fix their pain.

NEVER say “You can always have another child” or “It’s so good that you have other children.” Each child’s life is their own unique lifetime, one worth remembering, honoring and celebrating.

Contributed by Debra Houston, LMFT, Children & Youth Grief Support Program Coordinator, Hospice Caring Project and Loretta J. Ferris, MFT, Family Services Director, Jacob’s Heart Children’s Cancer Association