BY JULIE HAUER, MD

Parents demonstrate love in many ways, including ways that I am sure they would not have imagined or desired for themselves. I have observed the decision to utilize respite and long-term care to be one of those ways. I had my own assumptions about long-term care before considering the position of medical director at Seven Hills Pediatric Center. My views changed as I saw children and their families thrive following the loving decision to utilize long-term care. I believe families benefit when they have options. Knowing options is at the heart of pediatric palliative care, with a family then considering what option makes best sense for their child and family.

I have observed parents make this difficult decision for a multitude of reasons. For some, the complexity of their child’s care makes it difficult for their child to remain at home. I have seen families struggle as the amount of time needed to manage daily tasks for one child lessened available time with another child. As recent examples, a decision to utilize long-term care for one child then allowed more time with another child in high school, including time together to visit college campuses as well as enhancing time together before graduation arrived. I have also seen a recommitment in marriages and other relationships, such as the first vacation as a couple since the child’s birth or diagnosis.

No family makes this decision lightly. Parents share a variety of feelings, including guilt. What I have not observed is a family expressing regret. Rather, they express a sense of trade-off. They miss not having their child home. Yet they often express gratitude for their child’s increased attendance at school and daily activities, which occur on site. They also share the need to “let go” of certain expectations, such as “letting go” of how they would have done daily grooming of hair in a specific way, with a view of this being small in comparison to the benefits to their child and family.  And they are grateful for the partnerships with staff that involve sharing hopes and expectations. In my partnerships with families, this includes a philosophy of care that is guided by principles of palliative care: medical care plans are decided in a shared manner and guided by goals, such as identifying care plans that best enhance attendance at school and activities and forgoing approaches to care that interfere with this goal.

Considering respite and long-term care is more emotionally difficult than I will ever fully understand. A parent may fear that others will never be as attentive as they have trained themselves to be. I have discussed the option of long-term care with parents as a “leap of faith” that is never permanent. We are never trying to “sell” long-term care as being better. Rather, it is an option to consider when a child’s complex care needs are exhausting the emotional and physical reserves of a family. I am often in awe of what families manage out of a sense of love. I hope the support that others can provide, including the option of respite and long-term care, can allow more energy for sharing love as a family, rather than feeling obligated to show love through all of the daily tasks that are often needed for a child with complex medical care needs. I myself am grateful for this opportunity to better understand this option for families.

See Dr. Hauer’s videos and hear her talk with a mom about the decision to place her son in a residential home.