The Oncology Bereavement Program Offers Support for Families Coping With Their Loss And Grief

The diagnoses of a child with cancer causes devastation for the entire family.

The life-changing news can mean the loss of a “normal” life. Even the most straightforward cancer with a 95-percent cure rate can impact jobs, marriage and the children’s sense of security.

And in the most tragic cases, the diagnoses can result in the death of a child.

“Despite amazing advances in childhood cancer treatment, too many children will lose their battle,” said Kelly Vallance, M.D., a hematologist and oncologist at Cook Children’s. “Parents, siblings and friends are left behind to deal with their loss and grief, often without support.”

As a pediatric resident, Dr. Vallance noticed the special bond that developed between families of a child with cancer and their health care providers. So many families were in and out of a hospital over the course of years.

“That can be a sharp sever for families,” Dr. Vallance said. “In my training I felt there was a lack of end of life support for families. A lot of families feel once the goal of treatment changes from cure to comfort and they leave the hospital, a lot of families feel abandoned. Now they are home, meeting new caretakers or leaving the hospital without their child. They feel they’ve lost the security they have felt for so long being in the hospital.”

Dr. Vallance joined Cook Children’s in 2009, specializing in treating childhood cancer. In the back of her mind, she knew wanted to do something to help grieving families.

Cook Children’s Pastoral Care plays a pivotal role in helping families throughout the hospital who are coping with the death of a child, including children with cancer. But because of the special bond created with families and staff in hematology/oncology care, Dr. Vallance wanted something specific for those families.

After applying and receiving a scholar grant through Hyundai Hope on Wheels, Dr. Vallance started the Cook Children’s Oncology Bereavement Program. The purpose of the program is to provide and maintain a therapeutic relationship for patients and families during the entire spectrum of their disease, up to and including their death and 18 months past that date for their family and friends.

As Family Care Coordinator at Cook Children’s, Mandy Sale serves as a familiar face and primary contact for families in the Hematology/Oncology department. She visits the families and is an advocate for them during their stay in Hematology/Oncology. Because of her familiarity with these children, it only made sense that she would also help facilitate the Oncology Bereavement Program.

Sale and Dr. Vallance are two of a group of health care professionals involved in the program, including physicians, nursing, child life, pastoral care, social work and ancillary staff.

The group supports the patient and family throughout the continuum of end of life, death and the grieving period.

The experts in this field also offer help to those treating the families. An aspect of the program involves supporting the emotional needs and preventing compassion fatigue for the pediatric oncology staff.

But the primary focus is on the families. Few Pediatric Oncology Centers have organized or standardized support protocols in place for families during and after the loss of their child.

“We want to give comfort to parents, siblings and friends who are left behind to deal with their loss and grief," Sale said. "They are often left behind without support. Children with incurable or progressive illnesses, such as cancer, often express concern for their parents and siblings. They worry they will not be able to cope when they are gone. Through the bereavement program, we help to meet these hopes of our patients by caring and helping their loved ones during one of the most stressful life experiences and the lifelong grieving process."

The Oncology Bereavement Program includes:

Oncology Caregiver Bereavement support provides personal communications with the family, including:

• Maintaining a therapeutic relationship with all patients.
• Facilitate legacy building activities with families including trips/wishes when possible.
• Support for patients/families that remain inpatient for end of life care.
• Support for patients/families through transfer to home care or hospice care.
• Continued support by phone, for those who have left the hospital, by a familiar and involved team member during the hospice phase until time of death.
• Bereavement package at time of death with resources for support.
• Attendance by Oncology representatives at local funerals.
• Coordination of letter from caregivers.
• A personal card to family on patient’s birthday and anniversary of death.
• A bereavement phone call data base for follow up phone calls, from an involved familiar care giver, to families at 3,6,9,12 and further as needed.
• The option of trained therapist/counselor to visit child’s class and siblings’ classes to answer questions and provide grief counseling.

Bereavement Programs offered to families include:

• An annual Remembrance Ceremony.
• Camp Morning Star- A weekend camp for families who have lost a child that was treated at Cook Children’s. The camp is held annually at Camp John Marc in Meridian, Texas. Parents and children have a chance to enjoy being together as a family and also participate in therapeutic activates to help them cope with their loss.
• Sib Shop- Sib Shop is a national organization that is focused on helping meet the needs of siblings of kids with chronic illness. This group is led be a trained Sib Shop facilitator and Child Life staff from Cook Children’s. This is a specific group for siblings who have lost a brother or sister at Cook Children’s. They meet quarterly now but could increase this number with more funding.
• Referrals to appropriate grief family retreats and camps local and national.