Caring for the Spirit
in Palliative Care
To start, bring to mind one person you’ve cared for at the end
of their lives…How do you see caring for their spirits to be?
What does it involve? What might they need? From whom? Is
this part of your role?
As we go through this evening, bring them to mind…
Meg Hegarty
~ November 2012
Experiences of dying
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When someone comes into palliative care…
Facing illness, losses – of physical & mental function, roles, control of much ….,
fears…primal fears of separation, the unknown…
AWE – dying is awesome!! – often gently awesome – we can forget this in our familiarity with dying
Can challenge our world view, beliefs about the way things should be (I’ve lived a good life)
Some people haven’t thought much or at all about illness or dying …
Even for those who have and have a strong spiritual life,… expectations…Gethsemane…
…dying is hard.
Yet it can also be a time of growth, insight, deeper understanding, freedom, joy.
For most people it contains many of all of these aspects.
We all live and die in ways that are individual, yet share commonalities…
Dad’s dying….struggle with cancer, then dementia, the LOSSES …
but resource, very real and intimate relationship with God – struggled with God…
Ready to die – paradox of looking forward to even closer unity with the One who had loved and accepted and nurtured him
all of his life, but the grief of leaving this beautiful world and us… tears and anticipation, joy
luminous – radiated, oozed love…always had, but at end of his life when he couldn’t do anything else, this love that radiated
from him was even more obvious. Died congruously, family with him praying, Fran sang…a traditional evening hymn, an old
Latin prayer, committing oneself to God for the night…she sang the last note and he stopped breathing.
Yet for some people, dying congruously with their lives means continuing to struggle, “rage against the dying of the light”
(Dylan Thomas) for all sorts of reasons - ? not known deep, accepting love…unable to trust letting go
However our experience of illness, ageing and dying is, care of our spirit during this time is important.
Do we recognise what’s
happening for people?
“the terms "existential pain" and "spiritual
pain" are not heard at my workplace
(nursing home) although we at times
consider that a resident may have pain,
anxiety and agitation relating to something
other than physical pain.”
(Student PALL8435, May 2012)
Nor, perhaps, “existential or spiritual peace or joy or
celebration”!
The Summer Day
…I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel in the grass,
how to be idle and blessed, how to stroll through the
fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
With your one wild and precious life?
Mary Oliver.
What is spirit?
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Essence
Energy / life force
Spark of the Divine / God (known by many
different names)
Ground of Being, Deep Mystery
Higher Self / The Self
The Human Spirit
“One closer to me than I am to myself”
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me, spirit is the impulse towards
life, the Eros in a person leaping
forward, where meanings are made,
where there is a sense of this
gathering of perceptions, that our
death is not the most important thing,
nor our life….
and I feel a sense of collective soul, too,
connected to the whole of life…”
Michael Leunig, cartoonist
Spirituality
Spirituality is the aspect of humanity that
refers to the way individuals seek and
express meaning and purpose and the
way they experience their connectedness
to the moment, to self, to others, to
nature, and to the significant or sacred.
- Consensus Conference, USA, 2009
http://www.ncbi.nlm.nih.gov/pubmed/1980723
The Big Questions – conscious or unconscious
Spirituality is concerned
with the deepest levels of
human experiencing, the
places of ultimacy, value, and
deepest meaning for our
lives.
(Mercer,2006, p503)
Spirituality is about
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Connection, relationship
Meaning
Faith and belief
Living fully – creativity, humour, awareness…
Values (including, love, compassion, hope
congruence, integrity, dignity)
Transcendence
Becoming
Spirituality seems to be about
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Connection
Meaning
Faith and belief
Living fully – creativity, humour, awareness…
Values (including hope, love/compassion,
congruence, integrity, dignity)
Transcendence
When Death Comes
Mary Oliver
Becoming
Trust / Letting go – yet active involvement
Expressions of spirituality
Depend on
personality,
culture (social, religious & family),
the times in which we live,
life experiences and developmental capacities.
SPIRITUAL RESOURCES:
What nourishes life in me?
What feeds my spirit?
Where do I experience freedom,
strength and deep joy within myself?
Who or what helps me anchor?
*
Common spiritual paths
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Relationships –self, transcendent (God, Life,
wisdom…), family, friends, community.
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Nature – garden, sea, the bush, wilderness
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Aesthetic pursuits – art, poetry, music etc
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Metaphysical pursuits – silence, meditation,
prayer, ritual, philosophy
There’s no one right way!
So what is Care of the Spirit?
Care of the whole person
A strengths model of care
We meet the person at soul level …
we relieve them of the burden of being seen
primarily as the sick one, the frail one…
and we honour the significant journey
they are on.
Caring for the spirit
To create a safe space
To be with & to bear witness
To engage the depth
To support them in accessing resources
(past + new; inner + outer)
Create & Hold a Space
A space for what?
Create & Hold a Space
For presence & listening:
 Where it is possible to “experience the
experience” (Peter Barr); to be oneself
 Where the mystery and paradox of life can
unfold – and perhaps transcendence occurs
“A safe place to suffer”
(Stedeford A, 1987; p73-4)
3 Kinds of Listening
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Diagnostic listening - listening for
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Empathic listening – listening to
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Contemplative listening – listening with
(Byrne M, 2011)
Contemplative listening
Shift from “fixing” to presence/staying with
“the vulnerability of listening and having no answers”
(Lunn, 1990)
“living the questions…”
(Rainer Marie Rilke, 1934)
“When we honestly ask ourselves which persons
in our lives mean the most to us, we often find
that it is those who, instead of giving advice,
solutions, or cures, have chosen rather to share
our pain and touch our wounds with a warm
and tender hand. The friend who can be silent
with us in a moment of despair or confusion,
who can stay with us in an hour of grief and
bereavement, who can tolerate not knowing, not
curing, not healing and face with us the reality
of our powerlessness, that is a friend who
cares.”
― Henri J.M. Nouwen, The Road to Daybreak: A Spiritual
Journey
Language of the spirit
“the language of spirituality is an attempt to
give expression to something that defies or
resists language…an awareness of things that
are intangible, cannot be spoken of with
clarity, and yet are experienced as real”.
Mercer, 2006, p504
Language of the spirit
Includes head, heart, gut
Often symbolic – image, metaphor, story – meaning
Poetry
Music, Art
Embodied – dance, touch,
laughter, tears...
Ritual - celebration
Prayer
Silence – beyond words...Tagore
Symbolic language
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Story of Mick (Barbato)
Silence
Some experiences are too deep for words
Ritual
Dementia
The unique essence of “me” is at my core, and
this is what will remain with me at the end. I will be
perhaps more truly “me” than I have ever been.”
(Christine Boden, 1997, pp49-50)
“…a kind of passage from the mind into the heart.”
(Frena Gray Davidson, 1995, p7)
Dementia
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Importance of the moment of experience
(Boden, 1998)
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Hope is not destroyed by dementia
(McFadden, 2003)
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PWD experiences transcendence – lives full,
valuable, worth living.
Person centred care
Who cares for the spirit?
What’s needed for this work?
For all of us:
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Deep reverence for the wisdom of the other’s spirit
A capacity to be present with equanimity in the
suffering and anguish of the person’s journey
Openness to possibilities (hope)
To let go of the need to know – to live in the notknowing with serenity, trust “all will be well”
Recognition of the language of the spirit
Doing our own spiritual / inner work;
having a regular spiritual practice.
Self care.
What’s needed for this work?
For “specialists”
Training & ongoing supervision
Recognition of different spiritualities
Understanding of dynamics of suffering, hope, faith
(“ultimate concerns”), transcendence etc
Recognition of role of music, art, story etc. in
connecting with, experiencing and expressing
spirituality
Supporting, mentoring team
Connecting with my own
spiritual resources:
Caring for and
strengthening my own
spirit
Having a spiritual practice
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Regular daily practice
Integrate into professional life (e.g.
basis of call, stress management,
honoring patient)
Use of rituals
Spiritual community
Integrating forgiveness and gratitude
rituals into one’s practice
Christina Puchalski
Spiritual self care
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Recognise, enjoy & celebrate beauty and the
extraordinary in the ordinary
Become at home in the rhythms of life
Practice gratitude, forgiveness, compassion
Learn to delight in the paradoxes of life
Hold things lightly…learn to let go
Find the place deep within you where God/life/
and where your energy, love, creativity, goodness
spring from – and spend some time there
regularly.
Tell me, what is it you plan to do
With your one wild and precious life?
Mary Oliver.
Anam Cara
“We live in the
shelter of each
other.”
(Celtic wisdom)
Recap
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Everyone has a spirit, a spirituality and spiritual needs.
Holistic care entails caring for all of a person.
We experience and express spirituality differently, but share
needs to find meaning and for connection.
We can care for people’s spirits at different levels.
All of us can respect dignity, listen and care, provide a safe
space and refer on when someone with more specialised
training is needed.
We need to be aware of our own spiritual resources and
care for our own spirits too.
How am I going to continue
to develop my capacities
for caring for the spirit
– knowledge, skills, attributes,
attitudes?
“Strong back, soft front”
References & Resources
Aldridge D 2000, Spirituality, Healing and Medicine: return to the silence,
London: Jessica Kingsley Publishers.
Halifax J 2009 Being with Dying: Cultivating Compassion and Fearlessness in
the Presence of Death. Shambhala: Boston.
Hegarty M 2007 Care of the spirit that transcends religious, ideological and
philosophical boundaries. Indian Journal of Palliative Care, 12(2):42-47.
Killick J 2006 Helping the flame to stay bright: Celebrating the spiritual in
dementia. Journal of Religion, Spirituality and Aging, Vol 18, Issue 2/3.
Puchalski C 2006 A Time for Listening and Caring, Oxford: Oxford University
Press.
Resources
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www.gratefulness.org
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Puchalski, Cobb & Rumbold 2012 The Oxford
Textbook of Spirituality and Healthcare. OUP.
Rachel Naomi Remen
Henri Nouwen
Elizabeth MacKinlay (sp & ageing)
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meg.hegarty@flinders.edu.au
Screening & assessment
Discernment, not assessment?
Screening:
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“Are you at peace?” (Steinhauser et al)
 Support
2011)
needs
(Hegarty, Currow, Olver, Abernethy,
Spiritual history
Assessing strengths and resources, as well as
needs. A story, told over time.
Validated tools – e.g. FICA
Spiritual Reminiscence
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Looking back over your life, what do you remember with joy?
With sadness?
Tell me about the emotional and spiritual supports you have.
Are these from family and friends?
What things do you worry about?
What gives meaning to your life?
What are the good things in your life?
Do you have any fears?
What are the hardest things in your life just now?
Do you have an image of God? What is this like?
As you get to the end of your life, what do you look forward
to?
(Trevitt & MacKinlay, 2006)
Trevitt C & MacKinlay E 2006 “I am just an ordinary person…”: Spiritual
reminiscence in older people with memory loss. Journal of Religion,
Spirituality and Aging, Vol 18, Issue 2/3.