One of the most difficult things a parent or guardian must do is to sign off on hospice care for their young child when a cure is no longer possible. Palliative care, or care that keeps them comfortable until death, can last hours or it can last weeks. It most certainly takes an extraordinary amount of courage.
Making the Decision
Children don't have the capacity to create advance directives so their parents or guardians must make the decision to enter hospice care for them. Quality of life issues such as being home in familiar surroundings and pain control are two prevalent considerations.
Another is whether or not to have hospice care in a hospital or other facility. Unless there's a compelling reason to stay elsewhere, most parents elect to bring their child home for end-of-life care and have hospice workers come to the home.
Support of an Interdisciplinary Team
Once the decision's been made to bring hospice on board, you will have a team of nurses, aides, doctors, bereavement specialists, and social workers guiding you through caregiving so that you can concentrate on your child. Your team will help you with:
- Sifting through necessary paperwork when it is difficult enough to focus
- Daily temporal care like bathing or using the bathroom
- Nutritional counseling
- Spiritual needs according to your religion and bereavement counseling
- Administering medication and skilled nursing care as needed to keep your child comfortable
- Adjusting to a new normal together as a family
- Respite care
- Preparing for your child's passing by helping you watch for signs of life's end
You won't have to face these life-changing needs on your own. When you have a medical team to help you through what's arguably the toughest hours, days or weeks of your life, it helps you find the courage and tenacity to take one moment, one day at a time.
Often you will need respite care so that you can recharge to better take care of your child. Hospice not only cares for your child's palliative care but can also provide extra help so you can leave your home long enough to run errands.
This may be as simple as free time to go to the grocery, see a movie, visit an old friend or get your hair done without guilt for leaving your child. It takes just as much courage for your activities of daily living as it does making the decision to enter hospice care.
So make sure to communicate well with your hospice team. They aren't only there to keep your child comfortable, but to help you and your family with facing the end holistically and not alone.
For more information, contact a hospice care service.