Why FUN LAB?
For some people, hospitals are the most magical places on earth. They are where science makes miracles happen. But for kids they can feel like the least magical. Kids in hospitals have no privacy, lose control over their own body down to how, what and when they eat and sleep, are spoken about instead of to, and grow up far too quickly. Rona spent about 1 out of every 12 days of her life in a hospital. Those days mattered.
So we have created six principles to do better by our youngest patients -- one for each of Rona's birthdays.
FUN
Palliative care brings humanity into healthcare. It is not about end-of-life. It is about including quality of life in the treatment equation. Those teams make magic. And magic translates to happier children and happier families. Palliative care doctors have lower rates of burnout, because they know how to deal with patients’ emotional needs.
You don’t need to hire Patch Adams as your provider, but your team needs to understand why people like him are important and respect their work.
Kids just want to be kids. Even the really sick ones. We want them to have some fun.
UNDERSTANDING
When a clinical trial or potentially life-threatening treatment is your only option, the benefit of “your terminally ill child may survive” outweighs any risk. It is inherently coercive. In these instances, the process of informed consent needs to be less about the form, and more about ensuring families understand what could happen.
We help providers understand why it is critical to have open, honest conversations about what the real options and likely outcomes are for their patients so that every parent has the information they need to make the right choices for their child.
We want providers to go for understanding, every time and throughout treatment.
NUANCE
People want to live with a disease instead of being defined by it. And that is how it should be. Yet the language used with us in a healthcare setting is often cold and sterile. And having conversations about disease and prognosis in front of our kids can affect their mental health.
We are working to change how we speak with and about critically and terminally ill children and their families.
Nuance matters. We can help you adjust your language.
LIGHTEN
Rare diseases account for 47% of total healthcare costs because they require longer, more complex care than other conditions. Out of pocket costs for people living with a rare disease are 3-5x times higher than for their peers, rivaling those for treating cancer.
Being sick in this country is expensive. Beyond co-pays there are extra food costs due to dietary restrictions, more expensive childcare, specialized clothing and equipment, transportation to appointments, meals during hospital stays, housing close to a treatment center. Lost wages. And that just scratches the surface.
And for a long time after treatment ends, the bills come -- regardless of the outcome.
We advocate for policies and services that lighten the load of patients and their families.
ALLY
Affected families are experts in living with a rare condition. It's critical because many providers they encounter on their journey will have never seen the condition before.
When it comes to rare disease, shared decision making is the name of the game, both in the lab and in the clinic. Engaging people with lived experience early and often will get potentially life-saving treatments approved and into patients' hands faster. In the clinic, involving parents in care can be life saving.
We create spaces for experts in science and experts in lived experience to engage meaningfully to create better outcomes for kids.
BALANCE
Training in palliative and end-of-life care aren’t required courses in medical school, so we don’t teach enough doctors how to manage death well.
And we need to. Because when families need to make hard decisions, we need to be sure providers can set aside their own fears and be clear and honest about what the real options are.
There are multiple ways to understand the phrase “do no harm”.
We ask providers to consider all aspects of that phrase to have honest, balanced conversations when helping families make treatment decisions.
