Working with the Medical Team/ Goals of Care

Our pediatrician was the key that held everything together for us.

Parents of an infant with Gaucher Type 2 talk about the pivotal role their daughter’s primary care pediatrician played in coordinating her care at the hospital and just checking in as a safe place and extra set of eyes and ears.

Our Pediatrician provided stability.

Parents of an infant with Gaucher Type 2 talk the role their daughter’s primary care pediatrician played as the one constant, the primary relationship that carried all the way through beyond the specialists, including after their daughter’s death.

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.

We Are Going to Take One Day at a Time

Parents of a daughter with Trisomy-18 share their approach to living with her uncertain prognosis and advocating for her future with the medical team. "She needs the chance that you would give any other kid."

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."

I Want Straightforward Answers

A dad of a daughter with Trisomy 18 talks about telling doctors that he wants straightforward answers and no sugar-coating. "I want to know what I'm dealing with so I can hit it head on."

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 need his life to be good NOW.

A mom talks about advocating for her son's quality of life and managing his physical pain. "I wanted to be sure he was living a life that was worth living."

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.

It becomes about a good fit.

Pediatric psychologist Nancy Frumer Styron and parents talk about the importance of finding medical providers who are a "good fit" for the parents, and what this good fit looks like. Parents are the ultimate decision makers. Speak up.

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 Can Say, "That's Enough."

Parents of a daughter with Trisomy 18 talk about the importance of knowing and communicating what they want to the doctors, and being able to say, "Hey, Stop. That's enough!"

Her pediatrician is out of this world!

A mother and father talk about why their daughter’s pediatrician is so valuable to them, how he works with them, and how they think about emergency visits to the hospital: we are always going to go home.

It was a true collaboration.

A mother and father talk about finding their son’s pediatrician, about how the doctor practiced palliative medicine, and about the impact and value of the collaboration between parents and doctor.

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.

We knew we wanted him to be home.

Parents talk about their two priorities for their son, after his diagnosis -- that he be home and that he 'not be scared' -- and the providers and teams, including palliative care, that made this possible.

She is an individual, not a diagnosis.

Parents of a daughter with Trisomy 18 talk about advocating for their daughter to be seen by the doctors as an individual, not as a diagnosis with a poor prognosis.

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."

There’s no ONE conversation.

Grief counselor and psychologist Nancy Frumer Styron stresses that there are MULTIPLE conversations that happen over time, and that decisions can change as information changes.

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.

I wish somebody had told us about palliative care at the beginning.

The father of a 5-year old with Leigh's Disease, a mitochondrial condition, talks about how the palliative care referral should have come at time of diagnosis.

As a parent, you know instinctively in your gut that something’s not right.

A mother of a 22-month old with leukodystrophy talk about how not all doctors know how to deal with these special children and that she had to change hospitals to find the right team for her child.

I want parents to know to be empowered.

The mom of a 12-year old with SMA Type 1 and a trach encourages parents to find medical providers that you trust and can work with. Doctors don't know everything and we need to seek guidance from others. Don’t worry about offending them.

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>

Our pediatrician was the key that held everything together for us.

Our Pediatrician provided stability.

Our primary care pediatrician was our biggest support.

MD: Parents--Don’t underestimate the importance of your own goals and values

We Are Going to Take One Day at a Time

I relied mostly on the early intervention people to help focus on the living.

I Want Straightforward Answers

When it’s not a good fit.

I need his life to be good NOW.

I want providers to know that there needs to be some flexibility.

You can change your mind.

It becomes about a good fit.

We said, “We want to be part of the Solution.”

You Can Say, "That's Enough."

Her pediatrician is out of this world!

It was a true collaboration.

You want a sense of being heard.

Enough is enough.

We knew we wanted him to be home.

She is an individual, not a diagnosis.

It was very difficult to disagree with the doctors because we’re not doctors.

There’s no ONE conversation.

Now they say, “Whatever you say, Mom.”

I wish somebody had told us about palliative care at the beginning.

As a parent, you know instinctively in your gut that something’s not right.

I want parents to know to be empowered.

The medical machine is not very humanistic. Sometimes I think common sense gets lost in the bureaucracy.