Working with the Medical Team/ Goals of Care
Our primary care pediatrician was our biggest support.
The mom of a child with Sanfilippo talks about how, even with all the specialists, the pediatrician was their most important and supportive care provider. He coordinated the specialists and was the main person she called. He saw her as a normal child, not a child with a rare disease.
MD: Parents--Don’t underestimate the importance of your own goals and values
A palliative care doctor talks about the importance of providers' recognizing that parents have care goals for their child and that it is their job to help parents identify and vocalize them; a father of a child with leukodystrophy encourages parents to SAY what they want for their child. They will be heard.
I relied mostly on the early intervention people to help focus on the living.
The mother of a young boy with SMA-Type 1 talks about how where she found the most helpful support to help her care for her son - OT and PT folks: "The SMA doctors don't really tell you a lot about how to care for them, except about the medical stuff like tubes, not the daily living stuff."
When it’s not a good fit.
The mother and father of a 5-year old with Leigh's Disease, a mitochondrial condition, talk about the troubles, lack of initiative and disconnect they had with their daughter's first specialist. "When you have a doctor you're supposed to trust making you feel inadequate, it's not a good fit." "If the doctor's don't want to listen to another doctor, find another doctor."
I want providers to know that there needs to be some flexibility.
The mom of two sons with Mito talks about the practical limitations on her and her family -- work, logistics, older daughter -- and so how she can't be at the hospital all the time. I can't do it all. It takes a lot to get Avery into the hospital and I need understanding and some tailoring for the family.
You can change your mind.
Psychologist Nancy Frumer Styron talks about how parents can and do change their minds: sometimes it becomes the parents change their mind, sometimes it's because the medical team is providing new information. Flexibility is important. A mom shares how she changed her mind regarding her son's chemotherapy and how difficult it was to shift course.
We said, “We want to be part of the Solution.”
Parents of a 16-year old being treated for a rare form of leukemia share that they immediately accepted their daughter's illness and that they were immediately ready to work WITH the medical team. They also worked with the palliative care team and a psychologist. The father adds that 'With God, we weren't angry. We were ready to be part of the Solution"
You want a sense of being heard.
Grief counselor Nancy Frumer Styron discusses the importance for parents of being able to communicate their needs and feeling heard. A couple shares how critical it was for them that their son's medical team listened to their wishes and made them feel comfortable with their decisions.
Enough is enough.
A mom shares the last few months of her son's treatment protocol and how she was preparing herself for the fact that it wasn't working. "At what point do I take a stand and say Enough is Enough." She talks about the value of the palliative care team in the home that validated what she was seeing.
It was very difficult to disagree with the doctors because we’re not doctors.
The mother of a 16-year old being treated for aggressive leukemia acknowledges the commonly-experienced reality that parents rely on doctors to be the medical experts, which makes it hard to consider other options. "We agreed and prayed for the best."
Now they say, “Whatever you say, Mom.”
I have perfected it over the years. The docs now know I know my son best. The kind of meds he's on are not typical for a homebound child, and they have learned to trust that I have it right. I see him at home all day. They only see him a tiny bit when he comes in. The mom of a medically complex son with Mito talks about the rapport she's built with the doctors at the hospital where she has spent A LOT of time.
The medical machine is not very humanistic. Sometimes I think common sense gets lost in the bureaucracy.
<em>Parents of a 3-year old with a rare, life-limiting illness talk about how some of the limitations they've experienced from the hospital providers: they receive the most compassionate care from homecare providers and nurses and social workers.</em>