Rev Paul Nash
Senior Chaplain
Birmingham
Children’s Hospital
 Savour
not just take notes
 Stories from families
 Background information
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Religious, spiritual and pastoral care
Bereavement theory
 Practical
care
 Theological reflections
 Let the families help us
 Listen
to our stories, be there for the long
haul and continue to talk about our child.
There's an elephant in the room
You can’t, but that’s okay. I’ll never find a reason
why she died, but there is a reason why she was
alive, but it is not yet all clear why. It is hard
enough, you drive yourself mad finding an answer,
a reason. But this is hard.
Louisa’s mum
 Hard
letting anything else but grief into my
head. (Louisa’s mum)
 Grieving
is hard work, exhausting in fact, and
any supporting measure is greatly welcomed
by the bereaved.(Dylan’s family)
My auntie wrote us a letter which was a real
comfort to both of us. One of the things she
wrote was: ‘There are so many clichés that
people come out with at times of illness or
death, and while you know many of them
they are not what you want to hear right
now. You must grieve in your own way, both
individually and together, and whatever
emotions you feel, from sadness to anger, it’s
okay. God understands. Even though Joshua
had only a short life you must have precious
memories which you will always treasure.
Hang on to those.
Each day in prayer I thank God for the
continued unbroken link which we still have
with our departed loved ones through Him.
We take comfort from the fact that we can
indeed talk to God, the One who is caring for
them now and beneath whose gentle, tender
love and care they are not lost at all but are
now safe, truly safe, safe from all harm and
suffering. Furthermore, because above all
things God is love, it most surely then must
follow that someday we’ll meet and be
reunited with them again.
Grandparents: double triple grief
 Siblings: be honest, be literal
“We allowed Connor to see Lauren in the Chapel
of Rest the day before the funeral and he came
to the funeral, as he had asked to do both. He
was only five and a half, but I worried that his
fear of the unknown would be worse than
actually seeing the reality. Five years on and I
am glad we made that decision as he had his
chance to say goodbye”.
 Key times: anniversaries, birthdays, Christmas
 When and how to refer
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When it is Josie’s birthday we buy colourful candles and
they are lit all day; we buy balloons and release them. We
also do the balloons at Christmas. Our son got very upset
when he had his fourteenth birthday as he was very aware
that his sister never made it to this age.
Lauren loved dogs so we sponsored a guide dog for the
blind for her third birthday, two months after she died. We
also planted a cherry blossom tree in our garden which
blossoms around her birthday. We still bring Lauren back a
present from holiday, like a snow globe.
What we do is let the people who mattered to Tabea go up
to the grave with us. We then sing ‘Happy Birthday’ or
carols or whatever is appropriate for the occasion, then we
decorate her ‘garden’ with the little gifts that everyone
has brought with them, ensuring that all get involved who
wish to.
For Kofi's birthday we always celebrate by going out for a
meal where we used to take him and by visiting the
National Memorial Arboretum to see his tree
Skylark sing,
All day long
Day not long enough
 Sense
of injustice
 Not natural / normal / the way it is supposed to
happen
 More hopes and dreams are gone
 Do
not try and rescue
 Do not feel you must have all the answers
 “I am sorry for your loss”
 Be courageous, name the name of the child
 Befriend death
 Skills
– Attitudes – Knowledge – Ethics
 Theological integrity : pastoral expediency
 What to say
 Be creative
 Self care
It does not help the journey.
Walk slowly, pausing often.
Do not hurry as you walk with grief.
Be not disturbed by memories that come unbidden.
Be gentle with the one who walks with grief; if it is
you, be gentle with yourself.
Swiftly forgive, walk slowly, pausing often.
Take time to be gentle as you walk with grief.
Heard reflections
1.
God made the world and is in control.
2.
Therefore, everything that happens in this world is what God
plans, wills or desires.
3.
Therefore, my child dying is God’s will, because God knows
what he is doing and knows best.
Or
1.
My child is dying, has died. This is not good.
2.
Life goes on, and in due course good things come out of the
death of my child: I grow; I appreciate things I would not
otherwise appreciate; others are changed because of my
child’s life; I learn things I would not otherwise have learnt.
3.
Therefore, it must have been God’s will, plan and divine
purpose that my child has died.
Or
1.
Life is supposed to be fair.
2.
What is happening to my child is not fair.
3.
Therefore, God is not being fair with my family.
4.
God is not the friend of our family.
Healthy equation
 God loves your child and your family.
 God is for you, not against you.
 God is with you and has not abandoned you.
 God created a world and humanity with choice and consequences.
 There are other factors at work.
 This illness is not a judgement from God.
 This illness is not a test from God.
 It is not just a matter of finding the right amount of faith or the right
prayer – there are no formulae.
 God did not plan this. God is outside of our time frame and there is a
difference between knowing and determining.
 Not everything that happens in our world and our lives is what God
wants or desires.
 We have a redemptive faith that can bring good out of bad, negative,
evil situations.
 In the end, when all is said and done, we do not really understand
suffering.
 Redemptive not planned
1 I will take time to listen to the story and experience of the
family. I will seek to build a relationship of mutual trust. I will
ask, not assume, and will seek permission. I will honour and
respect. I will not abuse my power.
2 I will be confident in and cultivate who I am, to and around
children and their families, remembering that this is more
important than what I say. The type of person I want to be is
gracious, generous, patient, compassionate, kind, courageous,
honest, helpful, empowering, being compassionate first and
last. I will follow prompts, be bold yet gentle, minister with
intentional availability and vulnerability. I will draw upon
God’s gifts of discernment and wisdom in how to respond.
3 I will be a minister of presence, comfort, peace, hope,
redemption, forgiveness, resurrection and mystery.
4 I will befriend death and be more comfortable around dying
children and bereaved families, being willing to name the
elephant in the room. I will be a channel of appropriate hope.
5 I will have a care plan to keep in touch with the family and will not avoid
them. I will not be debilitated by a fear of saying the wrong thing. I will
create space and give permission for questions, doubts and concerns. I
will not be formulaic in caring, realizing that families will differ in how
they process their anticipated or realized loss, but also that there are
patterns in grieving.
6 I will be creative in my care, liturgy and rituals.
7 I will offer or facilitate practical help such as shopping, cooking,
attending appointments, registering the death, etc.
8 I will be aware of the tension between pastoral and theological integrity
and expediency. Sometimes being pastorally and theologically expedient
is good theology and pastoral care.
9 I will fight the natural tendency to make sense of what has happened
right this minute.
10 I will offer support and, if needed, give permission that a new normal
life is achievable and acceptable.
11 I will look after myself and value my role as part of a multidisciplinary
team. I will be reflective, self-aware, honest with myself, mindful of
triggers and willing to refer when necessary.
12 I will relax. There is nothing I might say that is worse than what has
already happened.
Be mindful of meeting different types of care:
religious, spiritual, pastoral and cultural.
 Don’t feel you always have to speak or have the
answers. Words are a blunt instrument. And
sometimes all we have is ‘I am so sorry for your news,
for your loss.’
 It is up to the family to make sense of their pain. It is
not the role of the professional to do it for them.
Fight the natural tendency to make complete sense of
the situation. Don’t redeem too quickly.
 Be both pro- and reactive in your care.
 Speak to and encourage others to talk to the child,
regardless of the level of consciousness. Use the
child’s name and be aware of his or her humanity.
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Be inclusive of all members for the family. Include those
who may be disenfranchised and try to engage with all
ages.
Don’t take the expressed emotions of the family personally
or permanently.
Don’t get drawn into protecting or defending the
reputation of God. Where appropriate, reframe the
question to look at what God is like.
Pray with wisdom and discernment, and be aware that
what you can always pray for is God’s peace, strength and
perspective for the children and the families.
Seek to act ethically and with integrity, and be willing to
help families explore ethical issues that may be involved in
their situation.
Be aware of the procedures leading up to, at and after
death, including understanding care pathways, so that you
can give the family appropriate support.
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Bereavement is only one type of loss that families may be
going through.
Grief is usually a spiral, not linear – a whirlpool is complex.
Families do become experts in caring for their child, and we
can learn from them.
Our pastoral care reveals our theological hands.
Individual family members will respond in different ways and
heal at different rates. Loss will often be felt way beyond the
family.
Dead children do not trump everything, although it is an
immense tragedy to lose a child.
It is important to articulate our own values. Mine are that the
best interests of the child – the needs of the child – should
always be at the centre of the care within the family.
Be honest, even when it’s painful.
Be present: we must make ourselves sacrificially available.
Be an agent of peace and hope.
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We asked families to tell us their top tips for professionals seeking to
work in palliative and bereavement care. This is what they
recommended:
Listen to our stories, be there for the long haul and continue to talk
about our child.
Offer help with the practical things of life like shopping or picking up
children from school or cooking a meal, and just drop in and visit to
help us avoid feeling isolated.
It helps to be reassured that our child is no longer in pain because as
a mother I always want what is best for my child. It helps to know
that God understands how we feel.
Our memories are really important for us to hang on to. Where
possible facilitate the creation of memories through rituals. Be
willing to keep listening to our memories.
It can be really helpful to come to memorial services, both for us as
families but also for our or our child’s friends, as it enables us to
continue to show our love for our child. Having our child’s name in a
remembrance book is a comfort too.
If there was one word to sum up everything else it is this – listen.
As the years go on, please don’t forget us. Even if you’ve not seen
our faces for a while, our lives will never be the same again. There
will always be someone missing and there will always be something
special about you who cared. (Tabea’s family)
As the years go on, please don’t forget us.
Even if you’ve not seen our faces for a
while, our lives will never be the same
again. There will always be someone
missing and there will always be something
special about you who cared. (Tabea’s
family)
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Phase
Engel (in Speck, 1978)
Kübler-Ross
Bowlby
1
Denial
Denial
Numbness
2
Developing awareness
Rage and anger
Bargaining
Depression
Pining
Disorganization
3
Resolution
Acceptance
Re-organization