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Hospice, Palliative Care, And Bereavement

November 10, 2009
“The grieving process with a child with a brain tumor starts at the diagnosis. That's when the grief, anger, and searching begin. And they continue after.”

In the previous chapters, we shared information about different types of brain tumors and the treatment options available. Your child may have been on a treatment protocol for cure, which may have included radiation therapy, chemotherapy, and surgery. However, there may come a time when all treatment options have been exhausted and your child’s condition is not improving. At that time, you might want to explore with your child’s medical team what medical options are available. The focus of treatment may change, and your child’s medical team may begin to discuss developing a plan of compassionate care to support your child through the dying process. When that time comes, it would be important to maintain open, honest dialogue with your child’s medical team about what your wishes are and what options are available medically to your child at this stage. The decision to move toward palliative care is a difficult one, filled with many emotions, including grief and anger, and the search for answers.

“When a child is first diagnosed with a brain tumor, death is the furthest thing from a parent’s mind. The immediate concern is for the child’s comfort, well-being, and recovery. No matter how much you may think you can prepare for the loss of a child, when it comes right down to it, you are never ready to say good-bye to your child.”

The goal of palliative care is to minimize suffering by managing symptoms while maximizing quality of life. This involves understanding and acknowledging issues such as pain management, palliative treatment, and nutritional requirements. Advance directives may be discussed with you to help inform and educate you about options you may have in deciding on end-of-life care for your child. The doctors who struggled to work toward a cure for your child may be reluctant to address these issues directly, so you may want to initiate this dialogue. You will want to gain knowledge and understanding, which is critical in helping you to make the decisions that you want for your child.

“When asked if he wanted to go on any special trip, he said no. He was happy where he was, doing what he was. He and we knew we had done all humanly possible, with a sense of personal dignity.”

At some point, discussion about hospice may be initiated by members of the medical team. Hospice is a philosophy that emphasizes and supports the physical, psychological, social, and spiritual needs of a child with a disease that is not responding to curative treatment. Hospice care is usually provided at home and sometimes may be offered in hospitals. Care is coordinated by a group of doctors, nurses, social workers, clergy, and volunteers who are specially trained to be available to patients and their families. There are many local hospice programs, and your child’s doctor and social worker will help to arrange this referral. Insurance, Medicaid, and private donations usually cover the expenses. For more information about hospice, you may contact

Children’s Hospice International

Phone: 800-2-4-CHILD
www.chionline.org

The loss of a child is a devastatingly unnatural experience for any parent. It does not follow the expected course of life. The process of grief can be a long and painful one during which you may feel alone and forgotten by others who go on with their lives. You may want to seek assistance and support through this difficult time for you and your other children. Often, local hospices offer bereavement programs that include individual counseling and/or support groups for parents and siblings. There are national programs as well, such as

Compassionate Friends
Phone: (630)-990-0010
Fax: (630)-990-0246
www.compassionatefriends.org
This organization has many local chapters. These groups, specifically for parents who have lost a child, meet approximately once a month.

If your social worker is not aware of local bereavement support groups for children, you may contact

The Dougy Center for Grieving Children
Phone: (503)-775-5683
Fax: (503)-777-3097
www.dougy.org

This national organization has trained many local agencies to provide programs similar to the one that it operates in Oregon. The organization’s web site has listings of children’s grief groups in various locations around the United States and in some other countries.

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