Communicating What Matters to Children at End-of-Life

I hope you’re all doing well, and I thank you for inviting me to talk with you about a child’s end of life.

It is an extraordinary time, and today I hope to tell you about a strategy that I believe could protect the well-being of parents and families who will lose a child, if you and I could build it into our care systems.

I call that strategy “the invitation.”

For those of us who are healthcare clinicians and want so much to be certain of everything at a child’s end of life, it is also an invitation to allow ourselves to be surprised.

We struggle to define, describe, and most certainly predict a child’s end of life.

We know it is ambiguous. But we also know it is a period when the likelihood of remaining alive begins to decrease, and that period of living ends with death.

In pediatrics, we would say that a child’s end of life involves both biology and human values.

As healthcare clinicians, we have some confidence about the biology. We know what to do to relieve a child’s suffering and support the family biologically.

But we do not know the human values of this unique child or of those who speak on the child’s behalf.

We cannot know unless we ask.

That is the invitation.

At a child’s end of life, that period of living is really a period of invitation.

In life, when you and I think about an invitation, we think about words, perhaps spoken or written, asking us to do something with someone or go somewhere with others with whom we believe we have something in common.

We hope something good will come from the invitation.

Without a doubt, an invitation moves from one person to another. It is an invitation to human connection.

At a child’s end of life, that invitation is all of that and more.

It is an effort to understand what matters most to this child now and to this family now.

If we ask, listen, and act on what we are told, we may ease the future for this family, a future that will be long without the life of this child.

The invitation comes at a time when, as clinicians, we want so much to appear as though we know what we are doing.

Yet accepting the invitation means being willing to be surprised. It means asking, listening, and acting on the words while we still have time, while the child is still living.

Most children in America die in a hospital.

That means those of us who are clinicians have every opportunity to do something through our actions and words that will make the experience better for the family who will survive the loss of this child.

We can do it in a way that is effective, low cost, and low burden, and that will travel with the family as they leave our care and step into the future.

For the past 25 years or so, I have had the great privilege of working with children who will not survive a fatal illness.

During that time, we have talked together about their hopes and the role they wanted to have in making end-of-life decisions.

When talking about their hopes, they were very clear that they knew the difference between a hope and a wish.

A hope might be wanting something better for children who will receive the same diagnosis in the future, or wanting their parents not to be too sad for too long.

A wish tended to involve having or doing something special.

They understood that a hope was grounded in reality, while a wish was much less likely to come true.

When talking about end-of-life decisions, the most influential factor for these children was caring about others.

But at the end of our time together in the study, they would say to me, “Please, would you do this same study with my parents? I’m worried about them.”

Why would a child at the end of life worry about a parent?

Why should you and I worry about parents who are losing a child or have already lost a child?

Because there is a subgroup of parents who suffer extraordinarily.

They die younger. They may have to leave the workforce because of health problems. They may experience their first psychiatric hospitalization.

They are among the most vulnerable people in our society.

We must be able to do something for them while they are still within our arms.

In America, between 60 and 70 percent of children still die in the hospital.

So I accepted the invitation from those children who would not survive, and I began working with their parents.

I asked them what they had considered when making an end-of-life decision for their child.

They identified nine different factors.

I think many of them are things you would intuitively expect, and our study team did as well.

Things like wanting no more treatment, wanting the end of the child’s life to be good, or doing what the child would have preferred.

But across studies, there was one factor whose full meaning we honestly did not understand.

Parents kept saying, “I want to do what a good parent would do for a seriously ill child. I want to decide as a good parent would decide for a dying child.”

We knew that to understand this human value, we needed another study. We needed to invite parents to teach us what it meant.

We even had to learn how to ask the question.

The invitation to enter a relationship with us as a healthcare team went something like this:

“Parents whose child is very, very ill have taught me that they have an internal definition of what it means to be a good parent to a seriously ill child. Would you please share with me your definition of being a good parent to your very ill child?”

We have now asked that question of more than 400 parents.

Importantly, all of them had an answer.

No one hesitated and said, “I don’t know what you’re asking. I don’t know what you mean.”

They all understood what it means to be a good parent when their child’s life is under threat.

They gave us key categories of answers about what it means to be a good parent to a seriously ill child.

Every definition is unique and therefore merits the invitation to enter a relationship with the team through the good parent question.

But there are commonalities, and I would like to share a few with you.

Being able to make unselfish and informed decisions on behalf of my child.

Being able to advocate for my child with the staff, even if it means that these people I trust may become angry with me.

Remaining at my child’s bedside, no matter how difficult it becomes.

Helping my child know that they will not be alone when they die.

And most importantly, helping my child feel certain that I, as a parent, have loved them well.

What we know from our research is that even first-time parents who give birth to a child with a fatal illness already have an internal definition of what it means to be a good parent to that very ill infant.

If we simply ask and extend the invitation for human connection, their answer can guide us in caring for the infant and the family.

Parents are also very clear about what healthcare clinicians can do to help them achieve their definition of being a good parent to their very ill child.

Let me share a few of those things. As you listen, look for what they have in common.

Staff respecting me and my decisions.

Staff comforting me and my child.

Staff knowing our unique needs.

Staff asking about our faith and respecting it.

Staff not giving up on us.

Staff telling us that we are good parents.

Staff not forgetting us when we leave, with or without our child.

What is common across all of these parent-identified strategies?

Relationship.

A human connection between us as clinicians and them as parents.

It is a human connection we can enter at a child’s end of life.

If we believe that a child’s end of life involves both biology and human values, and that we cannot know those unique human values until we ask the good parent question, then we should build that question into our healthcare systems.

If we ask, listen, and honor what parents tell us, we have every opportunity to protect their health and, in turn, the well-being of their families.

Thank you very much.