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.