When earth and heaven come close

by
17 October 2014

Jim Linthicum and Dorothy Moore Brooks consider the part that chaplaincy plays at Great Ormond Street Hospital

Children first: the Revd Dorothy Moore Brooks with a patient

Children first: the Revd Dorothy Moore Brooks with a patient

MOLLY, a nine-year-old girl undergoing chemotherapy at Great Ormond Street Hospital (GOSH), in London, was a tremendous artist. When the hospital school developed a project, "Happy Families", she immediately came to mind. The project was to draw pictures of the different members of the multi-disciplinary team with a speech-bubble containing their words.

Molly agreed to draw a picture of me (Jim); but I was surprised that she left the speech bubble blank. Her explanation was: "When you come to visit, you don't say that much. I do most of the talking. I guess the words inside the bubble, then, would mostly be mine." For me, this defines what spiritual care should be.

This sort of care happens in a variety of hospitals; so what makes the paediatric setting so different? In work carried out by the Paediatric Chaplaincy Network of Great Britain and Ireland, several factors are mentioned as distinctive. These include:

• beliefs about the nature of childhood, illness, chronology, and loss, including working with a wide range of childhood developmental stages;

• working with complex family and systemic needs - not only working with the patient, who, as a child, may not have capacity to consent, but also with a wider group, all of whom believe that they are part of the decision-making system;

• working within an environment in which specialised safeguarding knowledge is vital;

• working in a multi-disciplinary team that may include play specialists, paediatric psychologists and social workers, hospital teachers, and others. It is multi-layered and complex, but all the more enriching for that.
 

AT GOSH, the model of chaplaincy (as in so many chaplaincies today) is based on the premise that, although not everyone is religious, everyone is spiritual. We define "spiritual" as meaning that part of all individuals which can never be fully known or articulated, but is apparent in the nature of, among other things, their understandings of hope, sense of meaning, transcendence, and connections.

With regard to hope, we try to explore different futures with families, asking where hope might be found. There can be a tension in working with a family whose hope in God allows for only one future: full physical recovery.

Part of our position as chaplains is to allow for hope while still working within the reality of a difficult medical prognosis. Collusion with false hope can be damaging.

The rubber hits the pastoral and ethical road when the family and medical teams each have differing views about the future. If this is because of the family's faith, our team gets involved in an interpretative way, trying to find enough common language with which both views can maintain their integrity.

Telling members of a family that their faith flies in the face of medical evidence is rarely helpful; but neither is telling a highly skilled doctor that his or her experience counts for nothing in the presence of a God of miracles.

These issues become more complex in a children's hospital, where patients are often silent because of their age, or the critical nature of their illness.

 

OF THE 300-plus beds at Great Ormond Street, 50 are in the Intensive Care Unit. Many of our patients, then are in that place where heaven and earth feel ominously close. Hope can be a rare commodity in these wards, and yet, when it creeps in, even in the most tragic of circumstances, its healing presence is tangible.

As regards meaning, the "Why?" question hangs over a children's hospital like a constant cloud, and chaplains are not immune to asking it.

There are days when all we can do is to bang on heaven's door as meaning seems to be an elusive commodity. Our children do not let us stay in such a place of despair for long, however, even towards the end of life. For instance, when asked: "Why do you think we are going to baptise you today?", a patient's answer was immediate: "Because I'm really special."

It is that kind of authentic and faith-filled response that makes another day possible at the rock-face of paediatric chaplaincy. The children with whom we work have their own way of making sense of their lives, their suffering, and their place in God's creative plan.

Sometimes, people look at transcendence in the light of a transcendent God. They believe that the survival of their child, which they hope for beyond hope, will bear witness to this transcendence. Often, however, the transcendence of which we speak gives room to see God in the variety of outcomes within the bigger picture.

This can happen both when parents look to that hope beyond hope, and when they feel that enough is enough, and their child should not be put through any more, even though it is medically possible to continue with active treatment.

Their courage and ability to see the bigger picture - in this case, eternity - needs to be given voice. We can make time and opportunity for that voice to be heard by offering prayers and goodbye rituals. These are rooted in our own faith traditions, but are often bespoke, and always use age-appropriate language.

No matter how sick the child is, we never presume that he or she cannot hear or engage with what is happening. Great Ormond Street Hospital's motto is "The child first and always", and that is an important point of reference for any words or religious act we offer.

One place in which people experience something of the transcendent is undoubtedly our chapel, which, for all its over-the-top Victorian bling, offers a safe place for every emotion that needs to tumble out. One family whose baby had a heart transplant said this: "Having the chapel open all day, every day, is so important, because life and illness on the wards is extremely stressful, and it's difficult to find peace and a place for contemplation. It was good to have a quiet place to go, night or day, away from the hustle and bustle of the rest of the hospital."
 

MOLLY's speech bubble for Jim says a great deal about the kind of connections we try to make at GOSH with our patients and their families. Chiefly, they seek to be centred on the needs and journeys of the people with whom we connect.

Sometimes, they focus on the external relationships; other times, they arise out of the struggles that people have within themselves as they make some of the toughest decisions of their lives.

In all our relationships, whether with staff, patient, or family, the focus in this type of spiritual care is: whose words, language, hopes, and dreams are in that bubble? That is the focus of all chaplaincy, but, in its diversity, it is both playful and apprehensive, especially in paediatric chaplaincy. 

The Revd Jim Linthicum is senior chaplain, and the Revd Dorothy Moore Brooks is deputy team leader, at Great Ormond Street NHS Foundation Trust.

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