The Life-Giving Work of Paediatric Palliative Care – Rev Jenny Busch

How does the cross of Christ help us understand loss?


From Luke’s Journal 2021 | Dying & Palliative Care | Vol.26 No.2

Photo: David Beale at Unsplash

The prospect of working in paediatric palliative care at first seemed daunting to me. Facing the death of a child is a spiritually demanding time, when many families would be seeking a miracle, and I knew I couldn’t fulfil their hope.

The key for me has been moving my vision from sickness and death to the life-giving love of God expressed in Jesus and his completed work of the cross. This has not only helped me to carry the load of this work, but to do so with joy.

Here are some of the learnings and experiences that sustain me. I hope these might inform and sustain others as well.

Knowing my role boundaries

Although there are different approaches to pastoral care, as a Christian minister my pastoral care grows out of the good news of the Kingdom of God, best revealed in the life, death and resurrection of Jesus Christ.

Of course, I am mindful of the essential pastoral disciplines, and the important pastoral consequences, which must inform my interactions with children, families and staff. I also must respect the boundaries that the hospital places upon me as a chaplain.

But my primary task is, in word and sacrament, to help people discover the life-giving presence and power of God who already has defeated the power of death on the cross. What a joy!

“In places where death tries to declare its victory, I bear witness to the victory which Christ’s death and resurrection have accomplished.”

I do this by listening for evidence of where the Spirit of God is at work in each context and flow with it. I listen for where fear speaks lies into a situation, and I seek to defuse its power by affirming the truth of Christ. In places where death tries to declare its victory, I bear witness to the victory which Christ’s death and resurrection have accomplished.

While to the public I am known as a minister, I know that I am living and working within Christ’s ministry and the continued outflowing of what he achieved on the cross. My task is not to draw attention to what I do, but to what Christ has already achieved.

In this sense, it is important that I do not fall into the trap of title and position. Some patients and families want to elevate me or depend on me; others want nothing to do with me. I have come to understand that it has very little to do with me at all.

I play a support role to Christ who offers his ministry to patients, families and staff. As they respond to their situation in faith, through conversation, questions and actions, together we explore what it means to live in God’s grace.

Jacob’s story*

A paediatric palliative care nurse called me to come and visit a family. I walked into a three-bed ward and encountered five-month-old Jacob, who was screaming inconsolably. The mum was South Sudanese and English was a new language for her, adding to the complexity and tension of the moment.

The nurse explained that mum was Christian, and after introducing myself to her and thanking her for inviting me into her journey, I asked for permission to speak to her son. With her agreement, I introduced myself to this little baby.

I told Jacob about how God loved him so much that God came in Jesus to help us know the power of God’s love. I told him that although he might hear some doctors and nurses say that he was going to die soon, he didn’t need to worry because Jesus had already died. Jesus had gone ahead to make a way for him, and beyond death was another life with even more freedom and joy.

Together we celebrated that his name was shared with a man in the Bible with whom God entered into a special relationship, and that God had a special relationship with him as well.

Jacob stopped screaming. Some said he even had a smile on his face, and after being changed by the nurse he was placed in his mum’s arms. Everyone was amazed. In the midst of his physical distress, Jacob seemed to find a spiritual peace as he heard about Jesus. The head nurse asked if I would come back every day, even twice a day. After seeking mum’s permission, that is what I did.

Only later did I discover that because of the fragility of this little boy’s medical condition – congenital cardiac disease, pulmonary hypertension and Type 2 respiratory failure – mum had never held her son before that day, something she had longed to do.

A couple of weeks later, a ward nurse rang me to say Jacob was dying. I said I was unable to come immediately but I would be there as soon as I could. Aware of the spiritual connection which Jacob and I shared, she asked, “What should I do for him spiritually?” I replied, “Tell him about Jesus.”

Arriving at the hospital some time later, I discovered that Jacob had died peacefully in the nurse’s arms.

Prayer: Resting in what Christ already has done

Working in a government hospital, I am allowed to visit only those patients and families who ask to see a chaplain. It is essential that I respond to their wishes and not my own desires.

When people ask me to pray, I always agree. Where appropriate, I ask them how they would like me to pray. Some common responses are:

  1. Jesus you healed on earth – please heal me / my loved one.
  2. God, I pray not my will, but your will be done.
  3. God, I am sorry for my sin. Please take this punishment away.
  4. God, give us enough faith so that I / my loved one can be healed.
  5. Jesus, thank you that, through the cross, we are brought into your life-giving presence.

I pray the last way, mostly because I believe it best reflects the response we can make to what Jesus accomplished on the cross, by receiving it – everything has been done, and we do not need to ask for more.

Leah’s story

The first active case I worked on in paediatric palliative care was Leah, a 5-month-old girl who sustained Hypoxic Ischemic Encephalopathy caused by an incident at home. I had been praying with mum and dad during her stay in Paediatric ICU (PICU).

When Leah was diagnosed as palliative, the family was invited to consider the withdrawal of life-sustaining measures. Mum was reluctant, and after some days she said to me, “Jesus was in the tomb for three days. I just want three more days.” I negotiated a 3-day extension to their stay.

At the end of the three days, I was with mum in PICU. She knelt on the ground and asked me to pray as I laid my hands on both her and on her daughter in bed. My prayer was along these lines:

Gracious God: Thank-you that you love us so much that you came in Jesus to help us understand your loving nature. Thank-you that, because Jesus healed everyone who asked, we know that anyone can come to you and receive your unconditional love. 

It does not matter how old we are, what we have or have not done. It does not matter what culture we come from, or our religious background. You came for each of us. Thank-you that the healing which Jesus offered is now offered to all people through the cross.

Today we receive that healing for Leah, and we open her and ourselves up to receive more fully your healing grace. We entrust her to your loving care and watch for the ways the fruit of your life-giving love may grow in her life. Amen.

Shortly afterwards, the machines were turned off and little Leah breathed on her own. Was it because of me? No. And Leah continued to have complex and serious medical needs and died at another hospital four years later. But I believe the completed work of Christ on the cross spoke life, strength and hope into her that day, and her life then brought joy and hope to many.

“I believe the completed work of Christ on the cross spoke life, strength and hope into her that day, and her life then brought joy and hope to many.”

Fullness of life is already available

The life-giving miracle of Jesus has already occurred. I do not have to convince Jesus to do anything more for me or for anyone else. Rather, Jesus invites us to rest into what he has already done for the whole world on the cross. My role is to help others hear the good news and rest into the kingdom of God in which they are held by grace alone.

I once explained it to an adolescent this way: praying “Jesus, please heal me,” is a bit like asking your parents for $20 without realising that they had already put $1000 into your bank account.

The purpose of prayer, then, is to focus on the truth that Jesus – Emmanuel, God with us – has, through the finished work on the cross, defeated the power of all things that would separate us from God. Focussing on that truth allows the power and hope of that reality to flow to us more freely.

As Dean Drayton writes:

“[Faith] is about being able to name the God who is present. When Jesus says, ‘Your faith has made you whole’ his attention is on the person who is asking for healing. He acknowledges that the person has recognised that the healing God of the Kingdom of God is present. Because God is present or the Messiah is present, or the kingdom of God/Heaven is present, then healing can occur. The subject has recognised who can bring this about and has come in his presence.

When a person is able to name this God, it is to know God has already found them in and through the death, resurrection, and ascension of his Son, and places us in Him. … The consequences follow: we then experience that we are at peace with God by God’s act, and have obtained access to God’s grace, which opens to us this new creation in which we are found in Christ.”

(Apocalyptic Good News: Christ in the Cosmos, by R. Dean Drayton, 2019, page 222) 

Another way to describe this dynamic is that, when praying, it is best to say “thank you” for what Jesus has already done rather than “please do more”. There is nothing more for Christ to do. He finished his work on the cross. Through the Holy Spirit, His grace continues to flow.

Through this theological lens we see the answer to the question, “Why won’t God heal my child?” God has already taken away the power of death and offers all of us life, whether that be beyond death or living here on earth.

“God has already taken away the power of death and offers all of us life, whether that be beyond death or living here on earth.”

Following Jesus

“No sick person was ever commanded to sort their own lives out first before they could receive healing. He (Jesus) never gave up halfway through. He never discerned the Father’s will in matters of healing to be anything other than “Yes and Amen”. He said that he only did and said what he saw the Father doing in heaven. Jesus is, after all, the only perfect image of the invisible God.”

(The Blind Healer, by Mike Endicott. 2011, page 159) 

There is no record in the gospels where Jesus asks God to heal someone. Moreover, many healing accounts in the gospels indicate that Jesus was teaching and proclaiming the Kingdom of God and people were healed.

If I am to do what Jesus did, as a disciple of his, then the call is for me to tell people about the Kingdom of God, best expressed to us through the life, death, and resurrection of Jesus. It is through God’s act in bringing us into his presence that healing is made available to us.

Now it is true that well-meaning Christians have done a lot of damage in the way they have thoughtlessly proclaimed the Kingdom of God. The pastoral element of a chaplain’s ministry, indeed the ministry of any Christian, is to listen for where the story of the Kingdom of God intersects with the story of the patient and family, to affirm true links and challenge falsehoods in a way that is culturally and situationally appropriate.

Some examples include:

“I don’t know why God has sent this suffering to me.”

“Jesus helps me know that God took suffering upon himself rather than inflict it on others.”

“Is it God’s will that my child die?”

“Jesus shows us that God’s will is that no-one dies, that is why he died to offer eternal life.”

“Is God punishing me for not going to church?”

“Church attendance is not a requirement to receive God’s love. Besides, the Bible affirms that Jesus took all our punishment upon himself, so he didn’t have to punish us. This does not rescue us from the natural consequences of human behaviour, but it does assure us God is not punishing us.”

Of course, all these comments are out of context and are only examples of intersecting points. Chaplains learn what to listen for, as well as to wait for patients to initiate exploration.

Prayer plays an important part in the ministry of healing – physical, emotional or spiritual – and sometimes it is when we pray with or on behalf of a patient or family that we proclaim the kingdom, just by the affirmations and attitudes we articulate as we talk with God.

Miraculous healings never happen as a result of any human action. When they happen (whether we see them or not), it is always as an outpouring of God’s grace released to people whom God enables to hear and receive it in their time and space.

Christ’s death and resurrection are for all

In my role, I celebrate daily that the work Christ did on the cross is open to all people. I can offer it freely to anyone, even if they do not believe they are eligible. Christ died for all.

Being in a small chaplaincy team, I am often asked to help connect patients and families of various faiths with pastoral leaders from their own religious tradition. Sometimes they invite me to journey with them as well, or instead.

When asked to pray, I take my cue from how their religion regards Jesus as to whether I refer to Jesus, or take a less specific approach and refer to God. But I am committed to affirming that God’s will is life for all, and God’s grace is freely and abundantly present for every person in every situation.

When death comes

Death comes to us all. How does the cross of Christ help us understand loss through death?

Pastorally, we affirm that God is not distant or impassive in the face of human mortality, but that God has entered into the fullness of human experience in Jesus Christ, including suffering and death.

Theologically, we celebrate the gift of eternal life, however we understand that to be expressed.

Practically, we understand that the experience and impact of grief varies from person to person and takes time to integrate healthily into life.

While medical staff often meet and reflect on the professional and personal aspects of a patient’s dying, and while all of us are challenged to reflect on the meaning of our own life when we attend funerals, Jesus’ death and resurrection is the cradle by which I hold all other deaths.

I am thankful for the opportunity to rest into the love of Jesus and to invite others to do the same. While Jesus came to serve humanity, we are not Jesus’ boss. We are invited to boldly accept our relationship in Christ. We cannot demand an outcome, but rest into the outcome he has already given us of his own death and resurrection. 

I am thankful for the opportunity to rest into the love of Jesus and to invite others to do the same.

Each Lenten season, we recall the intentionality that Jesus gave to preparing others for his death. Despite all his efforts, no-one really understood what was to occur, and upon his death his mother was devastated and his disciples felt hopeless, abandoned, and afraid.

This enables me to normalise the wide variety of reactions from family and friends when a loved one dies, and to do so without judgement or fear.

It is no surprise that after his resurrection, Jesus appears first to his closest friends and family, offering peace and hope of his eternal life. Some immediately are filled with joy, others with questions and doubt, and some with fear.

Tracing Peter’s encounters with the resurrected Jesus helps us to know that Jesus will continue to speak life and hope and belief in us even when we do not believe in ourselves, let alone him.

Sometimes I will be a person who speaks a life-giving word to another, and sometimes someone else will do that. When I wonder how bereaved families and friends are going, I trust that, while each of us have our good and bad days, God is continually speaking life and hope and peace to them because that is what God speaks to us all.

Understanding this helps me set clarifying boundaries about what is mine to carry, and what is not. It enables me to hold to a future vision that is hopeful for the children and families we care for, along with the hospital department and staff.

Postscript: Andrew’s story

I first met Andrew when I was the chaplain at his sister’s school and met with the family. Against all expectations, he was aged 9 and energetic, happy and sociable – at two, he had been diagnosed with Type 1 Neurofibromatosis and given three years to live.

The family was active in church, and Andrew articulated a lively commitment to Jesus which brought him much joy and was the inspiration for his deep care for others over his own profound struggles. I engaged regularly with Andrew and the family over the next six years, and noted how much more at peace Andrew was about his deteriorating situation than his family.

Photo Geda Žyvatkauskaitė Unsplash

By 15, he had reached the point of needing full-time hospice care. One day, as it was clear that Andrew was dying, I offered to come and share bedside Holy Communion with the family. But when I arrived, Andrew was unconscious, and within minutes he died.

Raw with grief and shock, Andrew’s father, mother, sister and I still shared Holy Communion, partaking of the bread and grape juice within a simple liturgy recalling Jesus’ last supper with his disciples the night before he died. The liturgy spoke of all of heaven and earth joining in every moment that Christ’s death and resurrection is remembered in this way.

With tears, and amid our pain, we trusted that Andrew was sharing in that Communion service with us, not with bread and juice but in the real presence of the Christ who died for him and raised him to life.

We were not only with him until the very end. We were joining him in his new beginning – in the eternal celebration that Christ’s life, death and resurrection has given us life beyond death, always held in the mystery of God’s grace and love.

* Names used in stories in this article have been changed.

Rev Jenny Busch
Rev Jenny Busch serves as the Uniting Church chaplain at the Queensland Children’s Hospital and the Mater Hospitals (South Brisbane). She is a member of the ecumenical Order of Jacob’s Well which informs much of her theological framework. Previously, Jenny has served as a secondary school chaplain, worked with programs responding to child and family violence, and done supply (interim) ministry in several Congregations. Jenny is married to Rev David Busch.

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