Every parent’s world changes when a child is born. Everything we know as routine changes. And from the day we are told that our child will face a disability or have special health-care needs, our world begins to spin that much faster, and we look for support. For some of us, we learn that our baby, our little one, has more than daily challenges; their life may be just a brief moment due to a life-limiting, life-threatening, or complex medical condition. And then our world is turned upside down.
There is compassionate, comforting help out there for parents of children who are dying. Hospice care can be an incredible blessing and support to your family at exactly the time when you need support the most. Some people think hospice is a place, but it’s actually a service provided to a child and family wherever they are living at the time – usually at home or a special hospice facility.
Hospice care is end-of-life care. The goal is to make your child physically and emotionally comfortable and as free from pain as possible – living and playing as fully as possible – for as long as possible. This care meets the unique medical and emotional needs that arise in the last months and weeks of life by providing pain management to the child as well as counseling to the family, helping them learn to cope with the stress, grief, and loss before and after the child’s death. It is hard, maybe impossible, to imagine life without your child. In this difficult time, having a team around your family can be such a critical support.
As a parent, you’re a central part of the hospice team. The others on this team are doctors, nurses, social workers, therapists, home health aides, chaplains, and maybe other community professionals, such as teachers. The team works with you to assess your child’s needs and makes recommendations for certain services, including: medical, nursing, nutritional, respite care (temporary relief for the caregiver), help in the home, counseling, bereavement services, and inpatient care as medically needed. The hospice team will also help your family make hard decisions and they will care for your child wherever they live, day or night.
For many years, parents had to choose between curative and comfort care (hospice). Federal law did not allow families to receive both services at the same time, and this was very difficult. Thanks to the Patient Protection and Affordable Care Act, children can now get curative and hospice services at the same time. This means that you can continue to seek other treatments for your child that may extend their life while still making them as comfortable as possible with hospice care.
Many people find out about hospice providers through their doctors, hospitals, friends, the Internet, or the yellow pages. You can also contact the Texas and New Mexico Hospice Organization for provider and hospice information. Our website is www.txnmhospice.org or call us at 1-800-580-9270.
If you want to know more about comfort care for children with complex disabilities or medical conditions that are not currently life-threatening, you may also want to see our blog post on palliative care.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.