Caring for the critically ill child and their family

6 MINUTE READ

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

I often get asked why I work in Paediatric Palliative Care. It is a most rewarding and fulfilling job.

I have the honour and privilege to walk alongside some special families, children and young people doing the journey of life. Working in this area has taught me much and strengthened my faith. There have been challenging days where my faith has been tested, but I believe I am called and have been chosen to work with critically ill and dying children. 

Together for Short Lives defines Paediatric Palliative Care (PPC) as palliative care for children and young people with life-limiting conditions as “an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond”. It embraces physical, emotional, social and spiritual elements, and focuses on the enhancement of quality of life for the child/young person and support for the family.

“When we establish a partnership of trust we achieve more and the partnership becomes a healing one.”

PPC does not take away hope. Instead, it enhances the child’s short life. It’s about living, not focussed on dying. Dying will eventually happen, but until then it seeks to maximise the time the family has, and ensure that the remaining families survive intact. The PPC approach is not an either/ or approach to medical care, it is about integrating care of the whole patient ensuring that the child, young person, siblings and family’s needs are met. These needs are met through good medical practise and palliative care which fosters and develops trusting relationships with families early. When we establish a partnership of trust we achieve more and the partnership becomes a healing one. 

This is the same in our personal walk with Jesus, Proverbs 3:5-6 KJV directs us to – 

“Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths.”

The years I have worked in PPC, has taught me much about this. As a mother, working with very sick and dying children can be confronting and some children and families have a greater impact on us than others. I value the importance of that Scripture as it confirms the sovereignty of God because I cannot understand His ways. Conflict or ethical issues in PPC such as withdrawal of interventions or medical care, can unravel our faith and beliefs. In these situations I am often reminded of what Apostle Paul wrote in Philippians 1: 9-11 KJV- 

“And this I pray, that your love may abound yet more and more in knowledge and in all judgment;
That ye may approve things that are excellent; that ye may be sincere and without offence till the day of Christ; Being filled with the fruits of righteousness, which are by Jesus Christ, unto the glory and praise of God”.

My understanding of the knowledge spoken about here as having a spiritual awareness and judgement is wisdom. One of the main domains of PPC is providing spiritual care. Attending to the spiritual needs of the child and family helps them to seek meaning of what they are going through and assists them to find hope and comfort. Spirituality does not only refer to religious beliefs and values but rather has to do with our search for meaning. It is connection to something greater, finding purpose in life. Spirituality in children and young people with serious illnesses and dying, includes their knowing that they are unconditionally loved, safe, secure, and will not be forgotten. When this is lost, spiritual suffering manifests as feelings of hopelessness, grief and uncertainty of the future. 

Our work requires good self-care

A few ago, I experienced a challenging time at work caring for a young teenage lady. She loved life and was happy and bubbly, with hopes and dreams of finishing school, having a boyfriend and working. Despite her disease progression, she maintained hope and the expectations of a long, enjoyable life. Walking onto the ward one morning she was sobbing hysterically and uncontrollably. It was heart breaking because she did not want to die and was begging us to help her live. That was terrible to witness and Medicine does not prepare or teach you how to handle situations such as this.

At that point I doubted why I was working in PPC. We eventually calmed her down with the help of the Chaplain by addressing her spiritual suffering. 

The work we do in PPC requires us to care for ourselves. Without good self-care it is impossible to provide the care and support the families require of us. And it can impact our faith in God.

I finish here with Psalm 139:1-14 KJV which is a special psalm for me. 

O Lord, Thou hast searched me, and known me. Thou knowest my downsitting and mine uprising, Thou understandest my thought afar off. Thou compassest my path and my lying down, and art acquainted with all my ways. For there is not a word in my tongue, but, lo, O Lord, Thou knowest it altogether.

Thou hast beset me behind and before, and laid thine hand upon me. Such knowledge is too wonderful for me; it is high, I cannot attain unto it. Whither shall I go from thy spirit?
Or whither shall I flee from thy presence? If I ascend up into heaven, Thou art there: if I make my bed in hell, behold, Thou art there. If I take the wings of the morning, and dwell in the uttermost parts of the sea; even there shall thy hand lead me, and thy right hand shall hold me.

If I say, surely the darkness shall cover me; even the night shall be light about me. Yea, the darkness hideth not from Thee; but the night shineth as the day: the darkness and the light are both alike to Thee. For Thou hast possessed my reins: Thou hast covered me in my mother’s womb.

I will praise Thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.

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