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What Palliative Care for Our Son Meant to Our Family

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Today, I share my story about palliative care for a child.

Our palliative care team has asked me to share my experiences. I will be helping with an education session for doctors with little to no experience with children like my Matthew. So I wanted to share my story here with you.

Learning We Would Need Palliative Care

Matthew was medically complex from the beginning. But it took us and his teams months to clue into just how complex and fragile he was.

Towards the end of the first year, I had a soul-crushing conversation with an ICU doctor. After being rushed to hospital again, Matthew was in ICU. The doctor reported to me after two hours. They were doing everything they were prepared to do, but they weren’t sure if it was going to work.

A few days later, Matthew was actually on the mend. Almost back to himself when the doctor came to chat.

“When is your next appointment with his pediatrician?”

It was less than a month away.

“OK, when and not if you come back here. I want a very clear set of written instructions about what you want me to do with Matthew.”

This doctor knew there was something very serious going on. He had cared for him several times before. He was the first to put his finger on the growing suspicion I had.

Matthew wasn’t going to just “grow out of it” as so many nurses and other professionals had tried to reassure us over months. He asked me how I felt about it, and I remember saying “It’s nice when someone finally says out loud what you already know.”

I had stopped believing the empty reassurances weeks before that.

Matthew had spent between one to three weeks in the hospital every month or so since his first admission at 9 weeks old. Not counting special care or specialist appointments.

He caught every bug that was around, RSV, para-influenza, every cold virus. Matthew was tube-dependent and hadn’t developed much that year. He grew and put a little weight on. It was all hard won.

Before We Had a Chance to Process, It Got Worse

Between the ICU doctor’s chat and our pediatrician appointment, Matthew was discharged and then re-admitted again.

We woke one night to Matthew being grey, if I recall correctly (sleep deprivation was a huge part of my life for years until I made some changes).

I remember Luke holding his tiny body and speaking to the emergency call operator. Matthew being small enough to fit in his hands and forearms.

As Luke described Matthews condition, the operator instructed Luke to lay him on the floor and begin CPR. I could see and hear the panic in Luke’s voice and body language as I watched.

I dressed, turned the outside lights on and opened the door for the paramedics when they arrived to make us easy to spot.

I believe it was this ambulance ride where Matthew’s breathing would slow so much that the paramedic and I would shake him, tickle his feet and squeeze him to stimulate him to take another breath. The paramedic bagged him all the way to the hospital.

Reassessing What We Thought

Luke came into the hospital later that morning, and we sat together. We had briefly discussed the ICU doctor’s message that we needed clear orders after the last admission. Luke’s initial response was, “I don’t want to ever feel like we didn’t do everything we could.”

As we sat there dealing with this all over again in such a short space of time, Luke said to me, “How much of this can he take? What are we doing to him?”

It was easy enough then for us to sit with the pediatrician and discuss the options. We signed off on our first set of advanced care orders. Not for ventilation or CPR. We were referred to Very Special Kids and palliative care that day.

Palliative Care

Being referred to palliative care for a child is terrifying.

Part of you starts thinking about worst case scenarios — more than before —and trying to read into everything they say, every time you see them. As if some sudden change might have occurred that you don’t know about.

But actually, palliative care for a child is very different than for adults.

My experience tells me that normally an adult is put into palliative care when they have a short time to live and next to no quality of life left.

The teams’ job then is just to keep them as comfortable as possible and enable as many last minute moments with their loved ones as they can.

Hours, days, perhaps weeks and months — but never years.

Not so with children.

The Team

The team, at Royal Children’s Hospital Melbourne, is headed up by a consultant doctor, with only a few other doctors on the team, and mostly registrars, so not really newbie doctors. There are nurses, who don’t often change. They also have occupational therapists.

We had a nurse and a doctor who were our primary team, though we got to know everyone.

They came to our home for our first appointment; we sat together in our lounge room.

I remember my one burning question being “how does a family pay for a funeral?”

In my mind at the time, that seemed to be the most perplexing problem.

They looked almost a little startled by the question and they said to me, “We’re not here to talk about that. We can if you want, but we don’t have to. Not yet. We’ve got lots of time.”

They went onto explain that they are there to get to know us. To get to know Matthew, how we work, what things are important to us.

When things get really difficult, they won’t be strangers coming in and taking over. Their presence is reassuring and not a sign that something awful is about to happen any moment, so we know what to expect from them.

They don’t have to talk about Matthew’s death and dying every time they visit. In fact most times it’s the opposite.

They left us a book; it was huge, with all kinds of resources and covered lots of different things.

It was the world’s most morbid coffee table book. It looked kind of nice on the outside and you couldn’t tell what it was. But it sat on our coffee table until we moved.

I think I opened it once, but I couldn’t bring myself to read it.

Not until December 2018, years after we received it.

They Got to Know Our Family

I took the book into the hospital with me one day. The amazing palliative care team who we had now known for around four years, noticed right away.

They had spent all that time getting to know us. The team knew and supported us when Shane had behavioral issues from moving. They knew when Mackenzie started to get too big and bored to spend all week with me in the hospital visiting Matthew.

We received some respite funding when things got tricky and we still needed to get away.

They even organized a nurse so Matthew could be put on a leave pass from hospital to attend his own 5th birthday party. Palliative care took responsibility to make the call that the birthday party should go ahead instead of being postponed.

Palliative Care for a Child Isn’t About Death

Part of their roll, providing palliative care for a child, is to help their patients and their families get the most out of life. To get their medications and treatments right, not from a medical point of view, but a enjoying life point of view.

For us, they didn’t make the primary decisions for treatments and medications in the hospital or even at home — Matthew’s pediatrician was very invested in his care — but they did challenge them if there was a way to make things better for him, or even us.

They sent the music therapist to Matthew when he was in the hospital, and she would play for Shane and Mackenzie as well.

We even had an art therapist once who did a session with Shane.

They knew Matthew really liked music. They knew he liked to be stroked under his chin, something he could enjoy regardless of what he was plugged into.

Palliative care accessed funding from TLC to provide us with finger printed jewelry from a company that would keep the mold on file permanently. Just in case you lose it.

They loved to help create space for good memories.

Sometimes the Sight of Them Was Painful

Matthew’s pediatrician made a joke with Matthew’s palliative care doctor that every time I saw her, she made me cry.

It wasn’t her fault.

Yes, I am sure there were times they reminded me of the weight of what was happening. That we knew one day things would not get better.

Other times it was the weight of what was happening at the time. The frustration of what was going on. I was sometimes so relieved to see them and talk about what was on my mind that I would cry.

They Were Our Biggest Advocates

At times if I couldn’t get anyone from the medical teams to listen. Or there was something I couldn’t put my finger on, and it was the palliative care team that took us seriously.

The “thing” didn’t even have to be medical. It could be something about our lives that was being impacted by the way the medical team wanted us to manage a medication or a treatment.

It could be that the medical team had stopped testing for things, because they couldn’t recognize the effect a new issue was having on Matthew, because they didn’t know him as well.

There were many times I was so close to busting my boiler at the medical team (and perhaps looking back I would have been emotionally better off if I had) b,ut I was able to hold it together knowing I could get palliative care paged.

The team would come and I would debrief with them, get my concerns heard, and they would go and work behind the scenes to get answers.

They could have hard conversations with teams that I felt unable to have. I could ask them emotionally difficult questions and they would assist me in getting the answers I needed.

The team knew that palliative care for a child is not just about the child.

A level of consistency sometimes happened with palliative care that we couldn’t get with other teams. Less of the staff changes over every three months, unlike the other teams.

So often they were 100 percent the team who knew him best.

Palliative Care at the End

The palliative care doctor was the one to tell us that we had done everything we could for Matthew. That any further steps we took to prolong his life, would be for our (the team’s included) benefit and not for his.

She knew when she told us, “we’re not going to do the next procedure,” we would connect the dots.

My immediate reaction was, “That means he has like, less than three weeks to live.”

She half nodded, half shook her head, “A couple of short weeks.”

Matthew was gone seven days later. No procedure would have changed that.

They had kept right on top of his pain. They cut everything from his treatment plan that wasn’t helping keep him comfortable. None of these things came suddenly.

It was a gradual process as Matthew indicated what he needed.

This was more traditional, but it was still clearly palliative care for a child.

The team visited often that day. I spoke to them a couple of times over the weekend (he died on a Monday).

It was palliative care who alerted me to signs that things might be changing. With their support I felt prepared.

The Aftermath

They were not actually present when Matthew passed away (it was after hours — did I mention they work office hours with an on-call doctor?)

So early the next morning, when most of the team arrived, Matthew’s body had already been moved. We stood in his empty room in the hospital. They explained there were many options available to us for that day.

But also that we didn’t have to make any decisions right now. We had as much time as we liked.

They called us often in the following days after we left the hospital. They attended the funeral, at our invitation.

The doctor recalled one of my fears along the way would be that when Matthew was gone, my whole life would just disappear. They talked me through that.

One of the nurses met me the first few times I visited the hospital, to check in, ask questions and make sure I really was OK.

Navigating what was to come was a little easier because of their gentle heads up. They were even able to provide a little bit of funding for the funeral, again also directing us to TLC for more assistance.

We Are Totally Grateful to Palliative Care

As I ponder and plan my meeting with them and I reflect as I write, I am so thankful I had this team to support our whole family.

I know of families who decide not to have them involved in their care, as it’s too painful. They feel like there is too much focus on death.

This wasn’t our experience.

I know other families who found retelling their stories to palliative care after they had explained it already to the other teams taxing.

Matthew was very complicated. Sometimes in conversations with palliative care a new detail would come from the conversation. Or a change that only palliative care would think of and it would make a massive difference to him. And to us.

We’re so glad we had them.

If you’ve got a story you’d like to share about palliative care for your child, I’d be honored to hear it.

A version of this article was previously published on the author’s blog.

Getty image by paulaphoto

Originally published: March 27, 2020
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