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Pastoral Care in palliative care

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Title: Pastoral Care in palliative care


1
Pastoral Care in palliative care
  • Russell Armstrong
  • Barwon Health Palliative Care Program
  • 6 June 2013

2
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
3
(No Transcript)
4
From an Australian prophet
5
In 2010 Australians had the second highest life
expectancy in the world, behind Japan.
Although not for our Aboriginal brothers and
sisters
6
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

7
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, 20103

8
Why Spiritual Care?
  • Ive been feeling increasingly disconnected,
    and now Im 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

9
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.

10
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.

11
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.

12
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
    life-threatening 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)

13
Standards for ProvidingQuality 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.

14
What do we mean by spirituality?
15
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 2007S54

16
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 2003a1)

17
Religion and spirituality
From Bridge Lee 2009.
18
Religion and spirituality
19
Religion and spirituality
20
Religion and spirituality
21
Religion and spirituality
22
Spirituality as relationship or
communion/connection
(Communion with significant or sacred - Puchalski
et al)
Adapted from Chao et al 2002, reported in
Chochinov 200688
23
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 2007S45

24
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 2003a2

25
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 2003bS12

26
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. 2009887

27
(No Transcript)
28
Secular sources of meaning and connection
29
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

30
(No Transcript)
31
Signposts exploring everyday spirituality
  • honouring the sacred allowing stillness

32
Signposts exploring everyday spirituality
  • embracing change searching for meaning

33
Signposts exploring everyday spirituality
  • walking through shadow wondering at the
    mystery

34
Signposts exploring everyday spirituality
  • struggling finding
    connection

35
Signposts exploring everyday spirituality
  • remembering blessings forgiving

36
Signposts exploring everyday spirituality
  • lasting the distance standing in
    uncertainty

37
(No Transcript)
38
Spiritual or existential needs
  • 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 2005S-104)

39
Spiritual or existential needs
  • Subtle cues and clues
  • References to not wanting to be a burden
  • Why? questions
  • Whats 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 dont offer
    or ask (thus the importance of spiritual
    screening/discernment)

40
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 youre not quite so sure?
  • P tears welled up
  • C If thats uncomfortable when can leave it
    there
  • P No, I need to work it through

41
Spiritual or existential needs
  • Sometimes we might make a reasonable guess
  • Know disruption to their relationship web
  • 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
  • urgent need to redefine the nature of their hope
  • Approaching end of life
  • Unresolved business, wanting to repair/heal
    broken strands in web

42
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 anothers suffering.
  • Linda M. McWilliam
  • Spiritual Interventions in Bereavement Support
  • Theory Strategies and a Case Study
  • Spiritual Care Australia Conference 2010

43
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 persons
    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

44
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 2008b41

45
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.

46
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.

47
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

48
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 cant find is the thing we shall
    give.
  • To make love complete and to honour creation.
  • Michael Leunig, The Prayer Tree.

49
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 2003a3)

50
How do we offer spiritual care?
51
How do we offer spiritual care?
52
How do we offer spiritual care?
Cassidy, S Sharing the darkness
53
How do we offer spiritual care?
  • 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

54
How do we offer spiritual care?
  • The power of the story
  • listening to an elderly persons story is both
    a privilege for the listener and empowering for
    the storyteller.
  • (MacKinlay 2006a79 quoted in Hudson 2008a147)
  • The patients choice as to how s/he wants to
    write or tell the story
  • 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

55
How do we offer spiritual care?
  • The patients spiritual web (web of
    relationships)
  • enquiring about symbols/photos/art already in the
    patients 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

56
How do we offer spiritual care?
  • Redefining hope within a palliative context
  • e.g. story of Charles
  • Giving meaning
  • Signposts cards again
  • Nurture for your soul group
  • Blessing

57
How do we offer spiritual care?
  • Peter Roberts offering musical expression of
    spiritual care, able to touch people deeply as
    offers care beyond words

58
As death approaches
  • Funeral planning
  • If not already done
  • Supporting vigil
  • Music, silence, talking to person
  • Light candles
  • Protecting as sacred time and space
  • Facilitating a final good-bye
  • Ritual for a family blessing

59
How do we offer spiritual care?
  • Dont just do something, sit there
  • Recognise that most staff dont 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)

60
Afterwards
  • Bereavement support
  • Reflection and remembrance services

61
Nurturing our own spirituality
  • To heal a person, one must first be a person
  • Abraham Heschel, Jewish philosopher/theologian

62
Nurturing our own spirituality
  • We cannot do for others what we cannot do for
    ourselves.
  • McKenna, quoted in Puchalski Ferrell 2010, p.
    171

63
Nurturing our own spirituality
  • Being present to a patients suffering can
    change the clinician his or her values,
    priorities and beliefs can be altered by the
    experience of anothers suffering.
  • Puchalski Ferrell 2010, p. 166

64
Nurturing our own spirituality
  • How do you nourish/feed/strengthen your own
    spirituality?

65
Some possibilities from Signposts
  • Allowing stillness
  • Daring to dream
  • Finding connection
  • Honouring the sacred
  • Imagining
  • Letting go
  • Listening Intently
  • Living truthfully
  • Looking inside
  • Noticing beauty
  • Practicing compassion
  • Remembering blessings
  • Searching for meaning
  • Seeking balance
  • Sharing the load
  • Touching the sky
  • Wondering at the mystery

66
Nurturing our own spirituality
  • 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

67
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.o
    rg/cgi/content/full/56/2/84.
  • 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.
  • 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

68
Recommended references
  • 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_repor
    t_in_JPM_Oct2009.pdf.
  • A PowerPoint presentation on the report is
    available at http//www.gwumc.edu/gwish/clinical/P
    roject_Presentation_Improving_Spiritual_Care_in_Pa
    lliative_Care.ppt

69
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/ab
    outus/index.cfm.
  • Parker Palmers 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/

70
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?id15309
  • 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.m
    ncdgp.org.au/files/Spiritual20care20booklet.pdf

71
Closing words
  • 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.

72
Thank you
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