Decision Making and Palliative Care

The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.

The parents of an infant with Gaucher Type 2 talk about how the palliative care doctor and nutritionist helped them understand how to think about a feeding tube for their daughter -- not doing a tube didn't mean she was going to suffer or be hungry. The parents find fun ways to concoct high calorie pureed food for her to eat orally, and ultimately never had to make the decision.

Finding Hope

Parents of an infant with Gaucher Type 2 share how they came to see that there really COULD be hope in the face of a fatal diagnosis and the evolution of what they hoped for.  "We went from running away from things to running towards things for Emerson."

We were actively protecting her from things that wouldn’t be right for her.

The mother of an infant shares how electing NOT to choose medical interventions at first felt like she wasn't actively caring for her child and how palliative care helped her understand that 'doing things' wasn't necessarily protecting or helping her daughter. Reframing to see that sometimes less is more.

Once we understood what it was, we got on board pretty quickly.

The mom of a girl diagnosed with Sanfilippo recounts when palliative care was referred, how she wanted it for pain management, but her husband initially resisted because he thought it was only for end-of-life.

No one wants to feel like they’re ‘giving up' on their child.

The mom of a child with Sanfilippo talks about how challenging it is to tell the medical system to put the brakes on when the doctors are offering all these interventions. The genetic counselor notes that it is helpful to point out that the parents always have the child's best interest in mind, including when they are saying No.

Palliative Care made it possible for us to go home and live.

Parents of two children with life-limiting illness share how they learned what palliative care REALLY is. At first they misunderstood but gradually they learned how palliative care was about helping them achieve their parental goals, to get home and be comfortable. It is about helping the children and family THRIVE in the Here and Now. Palliative care isn't about giving up. It's about making the most of the time we have. Not all children are going to get better. You have to be OK in the in-between.

Dr. Joanne Wolfe presents on the Social Issue of Pediatric Palliative Care.

A social issue talk featuring Joanne Wolfe, MD, Director of Pediatric Palliative Care and the PACT team at Dana-Farber Cancer Institute and Children's Hospital Boston: : The needs of families caring for children with serious illness.

Palliative care isn't just skills and filling in a checklist.

A pediatric palliative care doctor talks about the challenges of the work, but stresses that if the process is done well and the parents' wishes are respected -- even if it is very hard -- 'it will work out.”

It seems to be a terrible waste if the primary care doctors are not part of the process.

A palliative care doctor talks about how primary care pediatricians are perfectly suited to deliver large parts of palliative care. They have strong relationships with the family already, know the family in their daily personal life. Some of it is about communication, listening, trust. "It's not like there are a lot of patients they will have but when they do, it is already in their scope of practice."

We weren’t tempted to do any experimental trials.

Parents of a little boy with SMA-Type 1 talk about how they considered (and dismissed) doing experimental trials. Mom didn't want to fly all around. Dad: "I know it might help children down the road and so it was a selfish decision on our part." Mom: "experimental things scare me."

Medical Orders/MOLST: Making the Decision Together

The mom of two sons with Mito talks about how the palliative care social worker helped her husband and her deal with the MOLST form. I said to him, This is something we need to do TOGETHER.

Medical Orders/MOLST: It was very emotional for me.

The MOLST form helps parents consider interventions that make sense and those that don’t make sense. It shows how you love your child and want to protect your child from interventions that aren’t going to help. The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about the MOLST form.

It was like this little secret society.

“We worked for two or three long years with the palliative care team to finally get good days with this boy who now has this smile and no pain. This was a work in progress that we did to get this boy a quality of life that we perfected. If he needs serious meds, he needs serious meds.” The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they worked together to get her sons comfortable.

Always hoping we can make it a little bit better.

The nurse says that role of the palliative care team is to find out what is most important to parents for their children: what makes today a good day for their child and figuring out all the possible ways that there are. Sometimes it's medicine, sometimes it's people coming to the house. The mom shares how the pedi pall team also really came to know her child so they could say to other docs what was typical and what wasn't. (The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they work together to get her sons comfortable.)

In our model we fall in love with your kids, and are a continuity factor.

Our Pedi Pall model of meeting the family together, as a physician, nursing, social work group and then, maintaining that relationship over time allows us then to both hear and learn and fall in love with your kids as well as the parents knowing what style works for them. We can be a continuity factor as kids go to clinic or ICUs. (The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they work together to get her sons comfortable.)

Please remind me what’s best for him.

The mom of two sons with mitochondrial disease talks about how her sons' palliative care team helps her remember what her goals of care are for her children. Nurse -- when you're surrounded by medical technology, it's hard to remember your love and your care and your parent role and what it was you want for your child.

How you balance hope in the reality.

A palliative care nurse shares how a team's history with the family helps a family hold on to hope amidst the tricky relationship between medical interventions and aggressive disease.

Tracheotomy for my son?

The mom of 2 sons with mitochondrial disease talks about all the variables that went into her decision not to select a trach for her son Avery. "What was he going to gain from it? I didn't want to separate the boys from each other or Avery from the dog. Now, don't ask me about it again. I've made the decision and I'm done.”

Spinal surgery for my son? The most difficult decision I’ve had to make.

The mom of two sons with mitochondrial disease talks about how she and her husband considered all the variables that went into their decision to ultimately forego spinal surgery for their son. It was all about quality of life. "I still don't feel totally at peace with this because I have a visual reminder every day that I decided not to do this. But I know I made the best decision for him because I do not want him living in the hospital because of a surgery that he may or may not survive and that he will need to keep getting."

Palliative Care Helps with Difficult Decisions

A little montage of how palliative care helped one family. It filled the gaps in all the most important ways.

Pediatric cancer means that we give these children medicines that are just so damaging.

The mom of a 9-year old daughter with cancer talks about how there just don't seem to be any good choices when it comes to chemotherapy. The side effects can be so brutal. You end up grieving little pieces of their life.

They gave us the strength to say YES to what needed to be done.

The mom of a 9-year old daughter with cancer talks about her daughter's entire medical team came together to talk about feasibility of her returning home to die. We were able to decide on what was the right thing to do for Lydia, which for her was to bring her home.

Stopping curative medication.

Parents share their decision to stop treating their son's pneumonia and the support they received from their medical team and palliative care team.

He gave us the lead on what decisions to make.

A mother and father talk about their focus on quality-of-life for their son, the challenges of decision-making, and how their son “showed us what to do.” They fought their fear of regret by letting their son guide them and trusting the process.

We weren’t going back to the hospital.

A mom talks about the parents and medical team decided to stop treating their son's illness and to bring him home for the remainder of his life -- they celebrated his birthday early, had visitors, kept him comfortable -- and how this helped the rest of the family "not be scared."

The value of home-based palliative care is we see the family at home.

A palliative care social worker describes home-based palliative care services and the benefits of being able to see a family, and family dynamics, when the child, parents, and siblings are at home and in a non-clinical setting.

I really want to hear the parents' perspective, What is their story?

A home-based palliative care social worker talks about the importance of giving parents an opportunity to 'tell their story' and the value of hearing all the nuances and details, that they don't necessarily get to share in a more intense hospital settings.

We try to make sure they are as prepared as they can be for parents.

A pediatric palliative care social worker talks about the value of talking with parents about what to expect at the end-of-life and encouraging the family to make decisions and plans for this time, so that they can focus on simply being present with their child.

We provide parents with hope and also the courage they need to take the journey.

A palliative care social worker talks about the importance of hope and helping parents find hope all along their child's illness journey, and how the language providers use with parents matters and can help.

We provide our expertise over the continuum of care and support the broader team.

A hospital-based pediatric palliative care doctor describes his role as part of a broader interdisciplinary team and providing expertise and guidance to the family over the entire continuum of the child's care, including guidance about what to expect at each phase.

Palliative care is the beginning of finding your way.

A pediatric palliative care doctor talks about some of the practical and 'bigger' things the palliative care team does: "We can walk alongside of the family for as long and however they need us, so they have someone they can turn to that isn't disease focused." The team also focuses on reduces personal suffering in all ways.

The sooner we can be thinking about the quality of life, the better.

A hospital chaplain talks about the value of the palliative care team and how they take the time to really listen to the family's story and understand the family's goals and hopes for their child's care.

Our pediatrician has been nudging us: “Are you sure you want to do these things?”

A mother of a 22-month old with leukodystrophy talks about how their pediatrician is helping them consider their goals of care for their child, and helping them think about which interventions they want for their child. “The providers respect our choices but are helping us not treat her just to treat her. Our goal is comfort care.”

For each intervention, we asked, “Is this going to benefit his quality of life or our family’s quality of life?”

Parents of a son with SanFilippo Syndrome share their decision-making framework. It wasn’t about ‘shoulds’. For example, we stopped tests that would tell us what we already knew, including swallow studies.

We created a space where we examined what the Next Steps are.

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how they considered whether to have spinal surgery (fusion) for their son and the role that palliative care helped them in making multi-faceted decisions. It was a ripple effect and we needed multiple doctors to consider the many dimensions. The interventions being considered in their entirety Had To Benefit Him. Doctor: “We get so confused as a medical profession when we say, ‘Well, he’ll NEED a g-tube. You may need a G-Tube to live for a long time but you may not need a G-Tube to live the kind of life you want to live.”

Palliative care gave us a language to talk to the medical specialists.

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how palliative care helped them translate our philosophy of care into a conversation with Ben's providers. Palliative care also gave them a space to re-evaluate their decisions over time without feeling badly. Doctor: We are interpreters who help translate between the specialists and the family.

Palliative care helps reframe interventions like feeding tubes.

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how they evaluated whether to give Ben a feeding tube. "Doctors go straight from A to B and they don't talk about what's in-between." Palliative care hears all your questions and helps you filter down to the most important things.

Re feeding tubes: It's about asking the right questions.

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how the issue of a feeding tube was interwoven with all these other systems and decisions. We wanted all the doctors in the room together talking to each other: "If we fuse his spine, what's the impact on his GI tract?" We wanted to feel like we'd had an open dialogue, not just a directive. Doctor: It's helpful to think about what the benefits/pleasures are of feeding by mouth vs what are the burdens. The Palliative Care role is to introduce the good questions to examine. Father: Palliative care helped us, the parents, make the decision, but it also helped all the providers broaden their perspective and understand the whole patient.

Medical Order forms: Do Not Resuscitate, Allow Natural Death

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how the opportunity arose around surgery to discuss the parents’ wishes and the use of medical forms. Doctor: The form is like insurance that your wishes are followed by emergency responders. And if you change your mind, you don't have to show the form to anyone. Parent: It was a way to put the agency/power back on to me. It also got us thinking about the Next Time and the Next Time and we needed to start doing that.

He's doing great. He's fantastic, even if his normal is terrible.

The mom of a 12-year old with SMA1 talks about how she thinks about his quality of life, all things considered. “He can't breathe on his own, that's terrible, he needs nurses to help assist him to make him fantastic. That's why he's fantastic, he has fantastic nursing coverage, his parents know how to take care of him very well, he's got a great environment, a lot of love and I think that's the primary ingredient for your child to happy, is just to love them and spend time with them and do things with them.”

It’s tough to talk about end-of-life preparedness, but it’s part of what we have to go through

The mother of a daughter with the life-limiting illness Canavan disease talks about how she has tiptoed towards the DNR and medical orders form, and also how she talks about it with her older, healthy daughter.

Palliative care fills a huge hole that comes from having a medically complex kid.

The mom of a son with SanFilippo Syndrome discusses how critical palliative care is because the pediatrician pulls back and then there's no one to help coordinate with all the specialists.

Palliative Care Focuses on All the Living

A palliative care nurse shares that it is the job of the team to help the family focus on the living and what that means -- how can we expand the opportunities for the living and celebration, how can we help them make memories. We don't assume that there is an obvious next step. (The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they worked together to get her sons comfortable.)

It has taken the specialists 11 years to get through to me.

The mother of a daughter with the life-limiting illness Canavan disease talks about how she frames the decisions based on her daughter's quality of life and how important it is to have The Discussion with the medical care team. "When I'm ready, I do what needs to be done."

Decisions start from Day One.

Grief counselor Nancy Frumer Styron discusses the range of decisions that parents face, right from the beginning: practical, logistical, financial, familial. And then throughout there are medical decisions that come up: feeding tubes, pain medication levels etc. And decisions about end-of-life: home or hospital. A mother reflects upon her fear that she wouldn't make the right decisions for her son, that the medicine would take over, but that ultimately she is proud of the decisions she made on her son's behalf.

Preserving his quality of life.

A mom shares how the palliative care team was there to help her preserve her son's quality of life. The team listened, respected what she reported, and reminded her of her stated care goals when she was questioning or wavering. "It was invaluable to hear my wishes mirrored back to me."

I always want parents to know they have a choice

A pediatric palliative care nurse shares how the team typically knows a lot about the pros and cons of medical interventions and also how the diseases typically progress, which allows them to be proactive with the family while also reminding the parents that they truly have choices. It’s not about the child NEEDING this or NEEDING that. “There are risks and benefits to everything that we bring.” (The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they work together to get her sons comfortable.)

We decided to let her do it on her own and she’s been here ever since.

A mother and father describe their daughter’s near-death hospitalization 9 months ago and their decision at that moment to ‘follow her lead.’

I learned about palliative care and thought, that’s exactly what we need.

The mother and father of a 5-year old with Leigh's Disease, a mitochondrial condition, share how they learned about palliative care from Courageous Parents Network, sought it out for their daughter, and the difference it has already made in how they feel about the care she is receiving, including during a medical crisis.

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.

Now I understand what palliative care is!

<em>Mom of a 3-year old with a rare, life-limiting illness: "It just kind of helps keep a good quality of life going. We're not necessarily end of life care right now, we're just looking at making sure her quality of life is where we want it to be. "</em>

The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.

Finding Hope

We were actively protecting her from things that wouldn’t be right for her.

Once we understood what it was, we got on board pretty quickly.

No one wants to feel like they’re ‘giving up' on their child.

Palliative Care made it possible for us to go home and live.

Dr. Joanne Wolfe presents on the Social Issue of Pediatric Palliative Care.

Palliative care isn't just skills and filling in a checklist.

It seems to be a terrible waste if the primary care doctors are not part of the process.

We weren’t tempted to do any experimental trials.

Medical Orders/MOLST: Making the Decision Together

Medical Orders/MOLST: It was very emotional for me.

It was like this little secret society.

Always hoping we can make it a little bit better.

In our model we fall in love with your kids, and are a continuity factor.

Please remind me what’s best for him.

How you balance hope in the reality.

Tracheotomy for my son?

Spinal surgery for my son? The most difficult decision I’ve had to make.

Palliative Care Helps with Difficult Decisions

Pediatric cancer means that we give these children medicines that are just so damaging.

They gave us the strength to say YES to what needed to be done.

Stopping curative medication.

He gave us the lead on what decisions to make.

We weren’t going back to the hospital.

The value of home-based palliative care is we see the family at home.

I really want to hear the parents' perspective, What is their story?

We try to make sure they are as prepared as they can be for parents.

We provide parents with hope and also the courage they need to take the journey.

We provide our expertise over the continuum of care and support the broader team.

Palliative care is the beginning of finding your way.

The sooner we can be thinking about the quality of life, the better.

Our pediatrician has been nudging us: “Are you sure you want to do these things?”

For each intervention, we asked, “Is this going to benefit his quality of life or our family’s quality of life?”

We created a space where we examined what the Next Steps are.

Palliative care gave us a language to talk to the medical specialists.

Palliative care helps reframe interventions like feeding tubes.

Re feeding tubes: It's about asking the right questions.

Medical Order forms: Do Not Resuscitate, Allow Natural Death

He's doing great. He's fantastic, even if his normal is terrible.

It’s tough to talk about end-of-life preparedness, but it’s part of what we have to go through

Palliative care fills a huge hole that comes from having a medically complex kid.

Palliative Care Focuses on All the Living

It has taken the specialists 11 years to get through to me.

Decisions start from Day One.

Preserving his quality of life.

I always want parents to know they have a choice

We decided to let her do it on her own and she’s been here ever since.

I learned about palliative care and thought, that’s exactly what we need.

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

Now I understand what palliative care is!