Pastoral Care in palliative care
Russell Armstrong
Barwon Health Palliative Care Program
6 June 2013
Expected length of life at birth, Australia, 1901-10 to 2004-06
Sources: ABS Cat No. 3302.0; ABS Cat. No. 3105.0.65.001
From an Australian ‘prophet’…
In 2010 Australians had the second highest
life expectancy in the world, behind
Japan.
[Although not for our Aboriginal brothers
and sisters]
Why Spiritual Care?
“Death is not the conclusion to a series of
medical events but a profound human
experience. As someone approaches death their
emotional and spiritual needs are as great as if
not greater than those of their bodies.”
Michael Barbato, quoted in Legge 2011, ‘The death
whisperers’, Weekend Australian Magazine, 21 May 2011
Why Spiritual Care?
“Illness, aging, and the prospect of dying can
trigger profound questions about who people are,
what their life has meant, and what will become
of them during the course of their illness and
perhaps after they die. Who am I? How will I be
remembered? These questions have the same
importance in patients’ lives as do questions
about treatment. Illness and dying are essentially
spiritual processes in that they often provoke
deep questions of meaning, purpose, and hope.”
Puchalski & Ferrell, 2010:3
Why Spiritual Care?
“I’ve been feeling increasingly disconnected, and
now I’m scrambling to get back some sense of
wholeness. The spiritual dimension of life has
become more important to me the longer the
journey goes, as it wears the soul down.”
‘Donna’
– long term cancer patient who has been on and off the
palliative care program over several years
From the patient…
“To the typical physician, my illness is a
routine incident in his rounds, while for
me it's the crisis of my life. I would feel
better if I had a doctor who at least
perceived this incongruity.”
Anatole Broyard was a former editor of The New York Times Book
Review, and died from prostate cancer on 11 Oct 1990, aged 70.
From the patient…
“I see no reason or need for my doctor to
love me - nor would I expect him to suffer
with me… I just wish he would brood on
my situation for perhaps five minutes,
that he would give me his whole mind
just once, be bonded with me for a brief
space, survey my soul as well as my
flesh.”
Anatole Broyard was a former editor of The New York Times Book
Review, and died from prostate cancer on 11 Oct 1990, aged 70.
From the patient…
“Just as he orders blood tests and bone
scans of my body, I'd like my doctor to
scan me, to grope for my spirit as well as
my prostate. Without some such
recognition, I am nothing but my illness.”
Broyard, A 1992, Intoxicated by My Illness: And Other Writings on
Life and Mortality (New York: Clarkson Potter, 1992), pp. 43-45.
WHO definition of Palliative Care
Palliative care is an approach that improves the
quality of life of patients and their families
facing the problem associated with lifethreatening illness, through the prevention and
relief of suffering by means of early
identification and impeccable assessment and
treatment of pain and other problems,
physical, psychosocial and spiritual.
(emphasis added)
Standards for Providing
Quality Palliative Care for all Australians
Standards make frequent reference to
 holistic needs of patients, caregiver/s, families
and communities
 holistic assessment
 holistic care
 the provision of emotional, religious or spiritual
support
 the provision of spiritual and/or pastoral care
workers
 resources to inform staff about customs, rituals
and icons important for individual religious
expression.
What do we mean by spirituality?
What do we mean by spirituality?
Spirituality is a deeply intuitive, but not
always consciously expressed, sense of
connectedness to the world in which we
live.
Eckersley 2007:S54
What do we mean by spirituality?
The secularisation of society that has
undermined western religious institutions
has not led to a corresponding
disappearance of belief. Instead, religion
has become deregulated.
(Rumbold 2003a:1)
Religion and spirituality
From Bridge & Lee 2009.
Religion and spirituality
Religion and spirituality
Religion and spirituality
Religion and spirituality
Spirituality as relationship or
communion/connection
(Communion with significant or sacred -
Puchalski et al)
Adapted from Chao et al 2002, reported in Chochinov 2006:88
Concerns re language 1
“Research shows that, while many patients do
not distinguish between being religious or
spiritual, others feel alienated from institutional
religion and see themselves more as spiritual
than as religious. This may be particularly true
for patients in Australia. The term spirituality is
vague enough to allow patients themselves to
define the playing field.”
Koenig 2007:S45
Spirituality as a web of relationships
In a holistic understanding, like that promoted by
palliative care, spirituality is manifested in a web of
relationships that hold people together by connecting
them with places, things, aspects of themselves, people,
communities, memories, and beliefs that give meaning
to their lives and nurture their spirits (Lartey 1997). So
people are sustained by their spirituality irrespective of
whether they are able to recognise and articulate
particular aspects of it. Some people may be reflective
about their spirituality, others may not, but all people
are spiritual beings. For each person the basic pattern of
the web is similar, connecting them with many levels of
the systems in which they participate. However, the
detailed structure of each web is unique for every
person.
Rumbold 2003a:2
Spirituality as a web of relationships
“Religious belief may or may not be part of that
web.
“For each of us, these relationships form a
unique pattern, and each of us needs that
pattern to be largely intact in order to feel
secure, or whole.”
“Often we only become aware of strands in the
web when they are stretched or broken, as
happens with a life-changing event like a
diagnosis of serious illness in ourselves or in
someone we love.”
Rumbold 2003b:S12
Finally, one helpful definition of 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 and the
sacred.
Puchalski, C et. al. 2009:887
Secular sources of meaning and connection
Nurturing our own spirituality
“For healthcare professionals to have
authenticity and integrity at the bedside,
they must ask themselves the same
questions patients and families are asking
and grappling with.”
Puchalski & Ferrell 2010, p. 170
Signposts – exploring everyday spirituality
honouring the sacred
allowing stillness
Signposts – exploring everyday spirituality
embracing change
searching for meaning
Signposts – exploring everyday spirituality
walking through shadow
wondering at the mystery
Signposts – exploring everyday spirituality
struggling
finding connection
Signposts – exploring everyday spirituality
remembering blessings
forgiving
Signposts – exploring everyday spirituality
lasting the distance
standing in uncertainty
Spiritual or existential needs
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Moadel and colleagues identified “unmet
spiritual or existential needs” in 248 ethnically
diverse, urban cancer outpatients in the USA.
Patients wanted help in
 overcoming fears (51%),
 finding hope (42%),
 finding meaning in life (40%),
 finding spiritual resources (39%),
 having someone to talk with about the
meaning of life and death (25%).
(Chochinov & Cann 2005:S-104)
Spiritual or existential needs
Subtle cues and clues:
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References to not wanting to be a burden
“Why?” questions
“What’s the point?” references
References to loss of dignity
References to it “not being fair”
Desire to die statements
Sometimes/often no clue at all if we don’t
offer or ask (thus the importance of spiritual
screening/discernment)
Spiritual or existential needs
Subtle cues and clues:
Patient had been talking to chaplain for some
time and in a very positive way about how well
she was coping, before quietly adding…
P: “Well, most of the time, anyway”.
C: [gently] “Sometimes you’re not quite so sure?”
P: [tears welled up]
C: “If that’s uncomfortable when can leave it
there”
P: “No, I need to work it through”
Spiritual or existential needs
Sometimes we might make a reasonable guess:
Know disruption to their relationship web
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recent bereavement
removed from local community for treatment
having to stop work
being unable to continue with important activities
Transition from curative to palliative
treatment
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urgent need to redefine the nature of their hope
Approaching end of life
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Unresolved business, wanting to repair/heal
broken strands in web
What do we mean by spiritual care?
“Spiritual care is fundamentally the
ability to be present for another,
entering into the sacred spaces where we
respond with infinite respect to the
mystery of another’s suffering.”
Linda M. McWilliam
‘Spiritual Interventions in Bereavement Support:
Theory Strategies and a Case Study’
Spiritual Care Australia Conference 2010
What do we mean by spiritual care?
“Each person defines their own spiritual needs
[in their own unique way], so spiritual care may
not mean providing answers to a person’s
spiritual questions but rather listening to them
and taking them seriously, that is,
accompanying and supporting an individual in
their exploration of their particular
understanding of spirituality and in their
development of their own sense of spiritual
well-being.”
Vivat, 2008: 860
What do we mean by spiritual care?
“We find that spiritual care is about
connectedness, but also about
incompleteness. It is about knowledge,
but equally about what we do not know.
It is about coherence and integrity, but
also about vulnerability. It is about
belief, but also about doubt.”
Rumbold quoted in Hudson 2008b:41
What do we mean by spiritual care?
After a slow account from a patient about his
loneliness, pain and despair, references to not
seeing the point in going on, no fear in dying
C: Sounds like dying has more appeal for you than
living just now.
P: [reaching out and taking my hand with
surprising strength] Thank-you my friend,
thank-you.
Patient then released my hand, rolled onto his
back and closed his eyes. It was time for me to
leave.
What do we mean by spiritual care?
“The person who can be silent with us in
a moment of despair or confusion, who
can be silent with us in our hour of grief
and bereavement, who can tolerate not
knowing, not curing, not healing, and
face with us the reality of our
powerlessness, this is the one who
cares.”
Palliative Care for Infants, Children and Adolescents,
Chap 6. Quoted by Liese Groot-Alberts, PCIC, Perth,
September 2009.
Spirituality and mystery
[Suffering] demands that we reject simplistic answers,
both "religious" and "scientific," and learn to embrace
mystery, something our culture resists. Mystery
surrounds every deep experience of the human heart:
the deeper we go into the heart's darkness or its light,
the closer we get to the ultimate mystery of God. But
our culture wants to turn mysteries into puzzles to be
explained or problems to be solved, because maintaining
the illusion that we can "straighten things out" makes us
feel powerful. Yet mysteries never yield to solutions or
fixes - and when we pretend that they do, life becomes
not only more banal but also more hopeless, because the
fixes never work.
Palmer 2000: 60
Spirituality, mystery and meaning
We search and we search and yet find no meaning.
The search for a meaning leads to despair.
And when we are broken the heart finds its moment
To fly and to feel and to work as it will
Through the darkness and mystery and wild contradiction.
For this is its freedom, its need and its calling;
This is its magic, its strength and its knowing.
To heal and make meaning while we walk or lie dreaming;
To give birth to love within our surrender;
To mother our faith, our spirit and yearning;
While we stumble in darkness the heart makes our meaning
And offers it into our life and creation
That we may give meaning to life and creation
For we only give meaning we do not find meaning
The thing we can’t find is the thing we shall give.
To make love complete and to honour creation.
Michael Leunig, The Prayer Tree.
What do we mean by spiritual care?
“Finally, spiritual care is implicit in good care - that is,
care that attends to the person. It begins in shared
human values rather than external belief structures.
Humility, and a willingness to treat the other's
experience as a social reality to be engaged, not a
phenomenon to be examined and then approved or
dismissed on ‘scientific’ grounds, are required of the
caregiver. A necessary condition for spiritual care is
preparedness to engage with the other as a fellow
human being. An expert stance at this point can only
block the possibility of spiritual encounter. This is not
to say that there cannot be expertise in offering
spiritual care, but such expertise involves the ability to
join the other in a process of discovery, not having
expert knowledge that objectifies the other.”
(Rumbold 2003a:3)
How do we offer spiritual care?
How do we offer spiritual care?
How do we offer spiritual care?
Cassidy, S ‘Sharing the darkness’
How do we offer spiritual care?
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Harvey Chochinov and colleagues work on
‘Dignity Conserving Care’ and ‘Dignity Therapy’
Topics for a seminar in their own right
Evidence based understanding of what
constitutes ‘dignity’
Models for how to conserve and protect dignity
at end of life
How do we offer spiritual care?
The power of the story:
“listening to an elderly person’s story is both a
privilege for the listener and empowering for
the storyteller.”
(MacKinlay 2006a:79 quoted in Hudson 2008a:147)
The patient’s choice as to how s/he wants to
‘write’ or tell the story
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connections that s/he wants to make
meanings that s/he wants to give
what s/he includes and omits
validation in having it heard
How do we offer spiritual care?
The patient’s spiritual web (web of
relationships)
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enquiring about symbols/photos/art already in
the patient’s room
encouraging symbols/photos etc in rooms to
nurture their connections to/relationships with
people/places/beliefs/things that are
significant to their spiritual web
Encouraging/facilitating contact with important
people in the web
Use of Signposts cards as an invitation for the
patient to reflect upon their spirituality
How do we offer spiritual care?
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Redefining hope within a palliative
context
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Giving meaning
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e.g. story of ‘Charles’
Signposts cards again
‘Nurture for your soul’ group
Blessing
How do we offer spiritual care?
Peter Roberts offering musical expression of
spiritual care, able to touch people deeply as
offers care beyond words
As death approaches
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Funeral planning
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If not already done
Supporting vigil
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Music, silence, talking to person
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Light – candles
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Protecting as sacred time and space
Facilitating a final good-bye
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Ritual for a family blessing
How do we offer spiritual care?
“Don’t just do something, sit there”
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Recognise that most staff don’t have luxury of
time to do a lot of that
Importance of pastoral care staff who do?
Our willingness to sit helplessly can sometimes
be greatest gift we can offer to patient
Sometimes a challenge to resist the temptation
to try to fix, soothe, solve (especially for those
closest to the patient; special gift to patient
when we can
Allowing ‘difficult conversations’ (things
patient might discuss with staff as ‘too hard’
with family)
Afterwards
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Bereavement support
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Reflection and remembrance services
Nurturing our own spirituality
“To heal a person, one must first be a person”
Abraham Heschel, Jewish philosopher/theologian
Nurturing our own spirituality
“We cannot do for others what we cannot do
for ourselves.”
McKenna, quoted in Puchalski & Ferrell 2010, p. 171
Nurturing our own spirituality
“Being present to a patient’s suffering can
change the clinician – his or her values,
priorities and beliefs can be altered by the
experience of another’s suffering.”
Puchalski & Ferrell 2010, p. 166
Nurturing our own spirituality
How do you nourish/feed/strengthen your
own spirituality?
Some possibilities from Signposts:
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Allowing stillness
Daring to dream
Finding connection
Honouring the sacred
Imagining
Letting go
Listening Intently
Living truthfully
Looking inside
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Noticing beauty
Practicing compassion
Remembering blessings
Searching for meaning
Seeking balance
Sharing the load
Touching the sky
Wondering at the
mystery
Nurturing our own spirituality
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Take a moment to centre yourself before engaging
with each patient (before entering their
house/room/space)
Allow stillness and time, e.g. for reflection,
prayer, meditation, yoga or Tai Chi
Reflect upon your spirituality as represented in
your own web of relationships
Read spiritually uplifting material
Laugh
Enjoy nature and art
Recommended references

Chochinov, Harvey 2006, ‘Dying, Dignity, and New
Horizons in Palliative End-of-Life Care’, CA: A Cancer
Journal for Clinicians, No. 56, pp. 84-103, available at
http://caonline.amcancersoc.org/cgi/content/full/56/2/84.
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Chochinov, HM and Cann BJ 2005, ‘Interventions to
enhance the spiritual aspects of dying’, Journal of
Palliative Medicine, Vol. 8, Suppl. 1, pp. S103-15,
available at
http://www.liebertonline.com/doi/pdf/10.1089/jpm.2005.8.s-103.
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‘Professor Harvey Chochinov: dignity therapy’,
SaturdayExtra, ABC Radio National, 31 October 2009,
available at
http://mpegmedia.abc.net.au/rn/podcast/2009/10/sea_20091031_0826.mp3
Recommended references
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Puchalski, C, Ferrell, B, Virani, R, Otis-Green, S, Baird,
P, Bull, J, Chochinov, H, Handzo, G, Nelson-Becker, N,
Prince-Paul, M, Pugliese, K & Sulmasy, D, 2009,
‘Improving the Quality of Spiritual Care as a Dimension
of Palliative Care: The Report of the Consensus
Conference’, Journal Of Palliative Medicine, Vol. 12,
No. 10, pp. 885-904, available at
http://healthcarechaplaincy.org/userimages/doc/Palliative_
Care/Archstone_report_in_JPM_Oct%2009.pdf.
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A PowerPoint presentation on the report is available at
http://www.gwumc.edu/gwish/clinical/Project_Presentation
_Improving_Spiritual_Care_in_Palliative_Care.ppt
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Recommended references
Dignity in Care – the website of Harvey Chochinov
and associates at Manitoba Palliative Care Research,
Winnipeg, Canada: http://dignityincare.ca/en.
The George Washington Institute for Spirituality and
Health, Founder and Executive Director Christina
Puchalski:
http://www.gwumc.edu/gwish/aboutus/index.cfm.
Parker Palmer’s centre. “When we reconnect who
we are with what we do, we approach our lives and
our work with renewed passion, commitment, and
integrity.” http://www.couragerenewal.org/
Recommended references
The Alphabet of Spiritual Literacy
One (free) part of the website Spirituality &
Practice: Resources for Spiritual Journeys
http://www.spiritualityandpractice.com/practices/features.php?id=15309
Bloemhard, Anna 2008, Spiritual Care for Self and Others: An
information booklet for professionals and volunteers working
in health care with a focus on aged and palliative care,
Mid North Coast Division of General Practice (NSW), at
http://www.mncdgp.org.au/system/files/sites/www.mncdgp.org.au/files
/Spiritual%20care%20booklet.pdf
Closing words
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Perhaps the care of the dying is not about the care of the
body but the care of the soul… Caring for the soul
requires that we be fully present in situations we cannot
control and patient as genuine meaning and a direction
unfold. It means seeing familiar things in new ways,
listening rather than speaking, learning from patients
rather than teaching them, and cultivating the capacity to
be amazed. It means recognizing the power of our own
humanity to make a difference in the lives of others and
valuing it is highly as our expertise. Finally, it means
discovering that health care is a front row seat on
mystery and sitting in that seat with open eyes.
- Rachel Naomi Remen,
from the Foreword to Puchalski & Ferrell, Making Health Care Whole, 2010.
Thank you