Palliative Care Homes
"This is not a place for dying, it is for living – even though those lives may be short." - anonymous
The goal is to connect with a family the moment they discover their child has a life-limiting condition, and they are on this path. To hold their hand through the entire journey by providing much-needed respite – short overnight breaks to catch up on sleep and recharge – palliative care and, when needed, end-of-life –hospice services.
Anything that is being done to care for a child at home can be done here. Trachs, breathing machines, adaptive toilets… medicine routines each day ….caring for the child to give parents a chance to sleep.
While there is diversity across local programs, generally these are the services that a free-standing pediatric palliative care home "Like House" provides:
Focusing on children with complex medical conditions (not disease-specific), the common denominator is that they are not expected to live into adulthood or have a long life. Realistically, that can be very difficult to predict….but it is a guide that the health care professionals and teams align around when determining qualification for services.
Our goal is to connect with a family the moment they know they are on this journey, often this is at moment of diagnosis – but it may even be sooner at a “moment of concern”. Sometimes it takes a while to confirm a diagnosis, and sometimes that never gets defined.
Once they are in the family….a Like House provides short-term respite breaks and palliative care services along the journey. The child can stay at the house for a couple of days (always includes an overnight) up to typically 7 days…and may have up to 28 days a year. It’s a guide, not a steadfast rule. The first time a child stays, the parent or primary caregiver also stays in one of the family suites so everyone gets comfortable…and even siblings are welcome. After that initial stay, if desired, the child can stay at the home without the parents….in fact, most stays are like that. Parents look forward to being at home to sleep soundly or maybe even taking a short trip or spending time with their other children.
While every child is unique, you find that there are many common elements to care that our teams become highly skilled at. We know how to administer medicines, manage trachs, use adaptive toilets, charge wheelchairs, use slings to get kids in and out of beds, showers, and even the hydrotherapy pool. There is usually a dull murmur of suction equipment, cough machines, and the like occurring throughout the house.
Anything that is being done to care for a child at home can be done here. ….caring for the child to give parents a chance to sleep.
The culture is home. Sometimes that is calm and relaxing, and sometimes it’s a bit crazy and chaotic when the local sports team comes for tea parties and fun. Whatever….it’s a home.
And when a child’s journey reaches the end of life, we are that natural children’s hospice home. There is no time limit for that. Sometimes it may be days, or weeks, or even sometimes months. Each home typically has a room or more focused for this care, and family suites to support the family closeness. Ideally the family has utilized the house for respite and palliative care along the way, and we are naturally transitioning support to more hospice levels as needed.
When a child dies, that impacts a family forever…each home has beautiful memorial recognition and respects the connection forever. Once they become part of the family, they are always part of the family….there’s no “6 months within end of life, nor 1-2 years of bereavement”….we support the family. Full stop.
The # 1 priority is end of life support. Our teams are ready because that call or knock at the door may happen whenever. Next priority is emergency respite. If you need us, we want to be there to help. If that means we may need to bump a family planning to come, we’ll do that….and know that we would do the same for them. And then finally, planned respite stays.
In the U.S., historical care conversations have focused on two primary ends of a spectrum…options have been either “Hospital” or “Home Health”.
For a child and family, all of the care at a “Like House” remains under the oversight of a primary care physician and specialist.
The Like Houses are really extensions of home…they fulfill a missing part of the care continuum in most communities.
Momentum for the pursuit of a national collaborative center sparked during the summer of 2021. Welcoming all passionate community-based program leaders into this National Center serves to strengthen our collective voice to champion change.