Traditionally, hospice and palliative care has been an all-in-one service provided when a person is thought to be in his or her last six months of life, and has decided to forego any further curative treatment. Many people associate hospice with the elderly or with cancer patients. Rarely is hospice or palliative care associated with children, especially outside of large cities or major medical centers.
Finding a Program
When we started looking into palliative care for my five-year-old daughter, who has mitochondrial disease, we were not interested in restricting her access to medical care to manage symptoms, nor transitioning in any way toward end-of-life care. We were seeking emotional, physical, and mental support for our entire family, as we suffered through the difficulties of caring for, and living with, a child facing life-threatening illness.
My daughter’s doctors are anywhere from one to seven hours away. We go to the hospital often for inpatient stays, and between admissions and travel for appointments, we weren’t able to find anyone local who understood our daughter’s complex medical needs, or the complex behaviors and emotions resulting from so much medical care and a life of constant upheaval. She is cognitively at age level, and therefore understands everything that is happening to her. She knows she has almost no control over her life and what is going on medically.
We had no support for our family, especially for our older child, who was being separated from us during admissions and spending time at the houses of various friends or neighbors. Finding help from palliative services was not just about our youngest daughter’s quality of life, but also about the life of our entire family.
Despite this, as we made our requests, we felt like we were knocking on closed doors. Our first hospital had a palliative care doctor, but she essentially was restricted to only pediatric cancer patients. We had better luck at our second (and much larger) children’s hospital, but their palliative program is very small and only provides inpatient services, and our needs were for services in our home. We then found a pediatric specialty hospice and palliative care service in the community, but it was two hours away from us. As we live outside their radius for in-home services, they could offer only outpatient counseling, and only at their office. While in-office counseling was better than nothing, in-home services were desperately needed.
I finally called a local hospice agency, but unfortunately, they told me they had little pediatric experience. Even worse, they did not take patients on TPN (IV nutrition) or tube feeds, as they consider these life-sustaining measures. My daughter needs both to live. I told them how very desperate we were for services. I begged them to at least talk with our pediatrician, a huge advocate of palliative care for children. After three weeks of conversation back and forth, the local agency agreed to take my daughter. It was relieving, but also bittersweet. She qualified for hospice due to a combination of her life-threatening condition, the fact that any infection could take her life, and because her quality of life at that time was poor. She was no longer coping well with her life, was developing very serious behaviors, and was an emotional mess.
Life with Palliative Care in Place
The months since hospice began taking care of us have been amazing! We greatly value quality of life, and for us, quality of life means less time at the hospital. The biggest benefit is how much we have gotten to stay at home. We do not have to travel to drop off labs each week. We do not have to travel for counseling. The 24-hour on-call support has kept our child out of the emergency room countless times. It means we can treat her infections at home, because someone can come assess her right away, whenever needed.
I remember a night our daughter was running a fever. Instead of putting her into the car for a trip to the hospital, a long stay in the ER, and then a transport to her main hospital, the hospice nurse came to our house to draw cultures. At one point, the nurse had to wait for additional supplies. While we were waiting, my daughter wanted to go out and play with the neighbor children. Yes, she was sick, but she wanted to go outside, and we want her to have the happiest childhood possible, so outside she went! Obviously this would have been impossible to do at the emergency department.
Due to the change in lifestyle hospice has given us, my daughter is so much happier! She is much more agreeable to procedures like dressing changes and blood draws. She is being treated like a little girl who wants to live life to the fullest.
We do not have a DNR or DNI for our daughter, as we are not at that point in her illness. Nonetheless, we still believe that the best place for her is at home, and because we have the extra support of hospice, her doctors are much more likely to allow us more responsibility in keeping her at home during illness. Furthermore, having my daughter under the care of hospice has been very helpful in my discussions with her doctors about how important quality of life is to us. While they do not restrict her medical care because she is a hospice patient, they seem to hear our opinions and thoughts with more seriousness than they did previously.
I believe every child with a life-threatening condition should have the benefit of in-home palliative services. The American Academy of Pediatrics supports this as well. Children are not simply small adults. They benefit from extra care focused on quality of life from the moment their world turns upside down with a serious medical problem. Families are better equipped to help their ill children if they are supported as well. If a child’s life nears an early end, the family is already in a trusting and supportive relationship with professionals who can guide and support them through end-of-life and bereavement. Medical decisions have more clarity when the care team is able to weigh medical benefits and risks versus quality of life. To me, hospice and palliative care is so very important for children and their families.