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Spiritual care at end of life:Spiritual care at end of life:rights, roles, rules, responsibilitiesrights, roles, rules, responsibilities

CAPS 2CAPS 2ndnd October 2014 October 2014Associate Professor Rosalie Hudson, RNAssociate Professor Rosalie Hudson, RN

Dip Arts, B App Sci, B Theol, M Theol, PhDDip Arts, B App Sci, B Theol, M Theol, PhD

Consultant Educator aged care, palliative care, Consultant Educator aged care, palliative care,

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IntroductionIntroduction

‘‘Spirituality is not an optional extra in a Spirituality is not an optional extra in a healthcare system that generally describes healthcare system that generally describes itself as holistic’ itself as holistic’ (Hudson, R. 2012)(Hudson, R. 2012)

A core strategy for humanising health careA core strategy for humanising health care Focus on inner meaning, approaches to Focus on inner meaning, approaches to

suffering & compassionate practicesuffering & compassionate practice Grounds spirituality with human finitude Grounds spirituality with human finitude (Cobb (Cobb

et al (2012).et al (2012).

The house of GodThe house of God

Old people in hospital:Old people in hospital: GOMERS: Get-Out-Of-My-Emergency-GOMERS: Get-Out-Of-My-Emergency-

DepartmentDepartment Husbandless hypertensive LOLs in NAD Husbandless hypertensive LOLs in NAD

(little old ladies in no apparent distress) with (little old ladies in no apparent distress) with their asinine demands for my care their asinine demands for my care (Shem, 1978)(Shem, 1978)

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RightsRights

Jack, Alf and the chaplainJack, Alf and the chaplain ‘‘It’s my body, it’s my right, it’s my choice’It’s my body, it’s my right, it’s my choice’ ‘‘If free people own their own lives, they must If free people own their own lives, they must

be free to end them if they wish’ (be free to end them if they wish’ (Russell, 2014)Russell, 2014)

A ‘life of my own?’ . . . Autonomy is not a A ‘life of my own?’ . . . Autonomy is not a matter of my own actualization if this is matter of my own actualization if this is taken as separate from the actualization of taken as separate from the actualization of others’ others’ (Mayeroff, 1971).(Mayeroff, 1971).

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Autonomy is relativeAutonomy is relative

‘‘The irony is that we want to uphold autonomy The irony is that we want to uphold autonomy for the elderly at just the time when their for the elderly at just the time when their condition makes autonomy least attainable condition makes autonomy least attainable and at a time in life when other human and at a time in life when other human needs – for care, for respect, for meaning – needs – for care, for respect, for meaning – are more pressing. Yet the poverty of our are more pressing. Yet the poverty of our moral discourse is such that we can only moral discourse is such that we can only offer to those in the last stage of life offer to those in the last stage of life more more autonomy autonomy (Moody, 1992).(Moody, 1992).

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Balancing rights & autonomyBalancing rights & autonomy

‘‘Autonomy is mainly an act of the will, not Autonomy is mainly an act of the will, not the intellect . . . agreeing to a course of the intellect . . . agreeing to a course of action’ action’ (Jeffery, 2001)(Jeffery, 2001)

The CEO and ShabbatThe CEO and Shabbat Oliver Sacks: ‘Do you think he Oliver Sacks: ‘Do you think he has has a soul?’ a soul?’ (Sacks, 1985)(Sacks, 1985)

Some worship experiences very cerebral, Some worship experiences very cerebral, with little scope for emotion and feelings with little scope for emotion and feelings (Swinton, 2001)(Swinton, 2001)

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Who decides? Whose rights?Who decides? Whose rights?

102 yr old resident & Augustine’s 102 yr old resident & Augustine’s ConfessionsConfessions

Rights lacking at end of life Rights lacking at end of life (Egan, 2014).(Egan, 2014).

‘‘Decisions are taken away from people, but Decisions are taken away from people, but they are not given to other people. They are they are not given to other people. They are left to the play of impersonal forces’ left to the play of impersonal forces’ (Taylor, (Taylor, 1994).1994).

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Whose role? Decision makingWhose role? Decision making

‘‘Gregor Samsa awoke one morning from a Gregor Samsa awoke one morning from a dream to find himself transformed into a dream to find himself transformed into a gigantic insect. . . As a consequence of this gigantic insect. . . As a consequence of this categorical change, Gregor is excluded and categorical change, Gregor is excluded and despised of. He is no longer considered an despised of. He is no longer considered an agent and ends up squashed by apples by agent and ends up squashed by apples by his own relatives’ his own relatives’ (Peisah et al, 2013).(Peisah et al, 2013).

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Roles: chaplainsRoles: chaplains

Many chaplains have accelerated their Many chaplains have accelerated their professional development:professional development:

Other healthcare staff encounter them as Other healthcare staff encounter them as CompetentCompetent QualifiedQualified Vocationally focused team members Vocationally focused team members (Swift et al, (Swift et al,

2012).2012).

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Role reversalRole reversal

The L’Arche community in Paris:The L’Arche community in Paris: Intellectually disabled young man sits in the Intellectually disabled young man sits in the

bishop’s chairbishop’s chair He remains there!He remains there! The bishop pulled out the chair’s footstool The bishop pulled out the chair’s footstool

and sat there until time for him to stand . . .and sat there until time for him to stand . . .

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Relational role modellingRelational role modelling

‘‘The truth of Christianity is only known The truth of Christianity is only known relationally . . . It is the task of spiritual care relationally . . . It is the task of spiritual care to enable people to become alive to this to enable people to become alive to this Word at their center’ Word at their center’ (Bonhoeffer, 1985)(Bonhoeffer, 1985)

‘‘I love the way Tony sits by Elsie just I love the way Tony sits by Elsie just stroking her hand’stroking her hand’

I hate the way that pastor ignores us and the I hate the way that pastor ignores us and the other residents’other residents’

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Role of researchRole of research

More to be done in developing research to More to be done in developing research to guide evidence-based practice guide evidence-based practice (MacKinlay, 2012).(MacKinlay, 2012).

The The amygdala: amygdala: centre of emotion remains centre of emotion remains active until late stage Alzheimer’s disease active until late stage Alzheimer’s disease (Zeisal, 2010).(Zeisal, 2010).

My creation in the divine image is as a soul My creation in the divine image is as a soul capable of love . . . I want you to relate to capable of love . . . I want you to relate to me in that way, seeing me as God sees me me in that way, seeing me as God sees me (Bryden, 2004).(Bryden, 2004).

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Care giving roleCare giving role

‘‘The majority of research only focuses on the The majority of research only focuses on the delivery of spiritual care interventions, rather delivery of spiritual care interventions, rather than the potential for the care giving than the potential for the care giving relationship itself to be a spiritual care relationship itself to be a spiritual care intervention’ intervention’ (Callahan, 2013).(Callahan, 2013).

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Family’s roleFamily’s role

Staff: Staff: ‘The families won’t let us . . .’‘The families won’t let us . . .’ Family member: Family member: ‘It would have been good to ‘It would have been good to

have felt that my role was valued . . . that it have felt that my role was valued . . . that it was seen’was seen’

Need to nurture relationships and Need to nurture relationships and interdependence of staff, older people and interdependence of staff, older people and family members family members (Nolan & Hudson, 2009)(Nolan & Hudson, 2009)

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RulesRules

The chaplain: criticism and defenceThe chaplain: criticism and defence AccountabilityAccountability Performance reviewPerformance review Policies & proceduresPolicies & procedures Recruiting & selectionRecruiting & selection Culture change needed?Culture change needed?

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ResponsibilitiesResponsibilities

Terminal care: last days/hoursTerminal care: last days/hours Spiritual care often not addressedSpiritual care often not addressed ‘‘No one clinician can meet the combined No one clinician can meet the combined

physical, psychosocial, spiritual and physical, psychosocial, spiritual and personal needs of patients’. . . Chaplains personal needs of patients’. . . Chaplains play a key role’ play a key role’ (Dein et al, 2013).(Dein et al, 2013).

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Reconciliation?Reconciliation?

Mrs A and her daughters: chaplain’s Mrs A and her daughters: chaplain’s responseresponse

Spiritual care: not a ‘messianic reaction’Spiritual care: not a ‘messianic reaction’ ‘‘A Christian practical theology of death and A Christian practical theology of death and

dying . . . must also lead to transformed dying . . . must also lead to transformed practices of care’ practices of care’ (Scheib, 2009).(Scheib, 2009).

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Our own spiritual careOur own spiritual care

‘‘Only one who has been under spiritual care is Only one who has been under spiritual care is able to exercise spiritual care. . . The load is able to exercise spiritual care. . . The load is too heavy to bear alone. . . The life of the too heavy to bear alone. . . The life of the pastor completes itself in reading, pastor completes itself in reading, meditation, prayer, and struggle’ meditation, prayer, and struggle’ (Bonhoeffer, (Bonhoeffer, 1985).1985).

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SummarySummary

Spirituality does not occur in a vacuumSpirituality does not occur in a vacuum

It involves rights, roles, rules, responsibilities:It involves rights, roles, rules, responsibilities: ResearchResearch EducationEducation Clinical careClinical care Community engagementCommunity engagement Policy development Policy development (Cobb et al, 2012).(Cobb et al, 2012).

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ConclusionConclusion

We can look with confidence to a future We can look with confidence to a future when spirituality has a transforming effectwhen spirituality has a transforming effect

Not merely to make older people more Not merely to make older people more spiritual BUTspiritual BUT

To make us all. . . relate to one another as To make us all. . . relate to one another as humanshumans

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References (cont’d)References (cont’d)

Bonhoeffer, D. (1985)Bonhoeffer, D. (1985)Spiritual care, Spiritual care, Trans by Jay C. Rochelle, Fortress Trans by Jay C. Rochelle, Fortress Press, Philadelphia, p.68-9.Press, Philadelphia, p.68-9.

Cobb M; Puchalski C; Rumbold B. (2012). Preface,pp.vii,viii. In M Cobb M; Puchalski C; Rumbold B. (2012). Preface,pp.vii,viii. In M Cobb, C Puchalski, B Rumbold (Eds.). Cobb, C Puchalski, B Rumbold (Eds.). Oxford Textbook of Spirituality Oxford Textbook of Spirituality in Healthcarein Healthcare. Oxford: Oxford University Press.. Oxford: Oxford University Press.

Dein S ; Swinton J; Abbas S. (2013). Theodicy and end-of-life care. Dein S ; Swinton J; Abbas S. (2013). Theodicy and end-of-life care. Journal of Social Work in End-of-Life & Palliative Care, Journal of Social Work in End-of-Life & Palliative Care, 9: 191-208.9: 191-208.

Hudson, R. (2012). ‘Personhood.’ In M Cobb, C Puchalski, B Rumbold Hudson, R. (2012). ‘Personhood.’ In M Cobb, C Puchalski, B Rumbold (Eds.). (Eds.). Oxford Textbook of Spirituality in Healthcare, Oxford Textbook of Spirituality in Healthcare, pp.105-112. pp.105-112. Oxford: Oxford University Press, p.105.Oxford: Oxford University Press, p.105.

Jeffery, P. (2001). Jeffery, P. (2001). Going against the stream: ethical aspects of ageing Going against the stream: ethical aspects of ageing and care. and care. Gracewing: The Liturgical Press: Herefordshire, p.90.Gracewing: The Liturgical Press: Herefordshire, p.90.

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MacKinlay, E. (2012). ‘Care of elderly people’. In MacKinlay, E. (2012). ‘Care of elderly people’. In Cobb M; Puchalski Cobb M; Puchalski C; Rumbold B. (2012). Pp.251-242.C; Rumbold B. (2012). Pp.251-242.

Mayeroff, M.(1971). Mayeroff, M.(1971). On caring. On caring. HarperPerennial: New York, pp.95-96.HarperPerennial: New York, pp.95-96. Moody, R. (1992). Moody, R. (1992). Ethics in an aging society. Ethics in an aging society. The Johns Hopkins The Johns Hopkins

University Press: Baltimore and London, p.4.University Press: Baltimore and London, p.4. Nolan M & Hudson R. (2009).’Family and palliative care in care homes Nolan M & Hudson R. (2009).’Family and palliative care in care homes

for older people. In P Hudson & S Payne (Eds.). for older people. In P Hudson & S Payne (Eds.). Family carers in Family carers in palliative care: a guide for health and social care professionals. palliative care: a guide for health and social care professionals. Oxford: Oxford: Oxford University Press, pp.169-190.Oxford University Press, pp.169-190.

Peisah C; Sorinmade O; Mitchell L; Hertogh C. (2013). ‘Decisional Peisah C; Sorinmade O; Mitchell L; Hertogh C. (2013). ‘Decisional capacity: toward an inclusionary approach.’ Guest Editorial. capacity: toward an inclusionary approach.’ Guest Editorial. International PsychogeriatricsInternational Psychogeriatrics, Volume 25, Issue 10.pp.1571., Volume 25, Issue 10.pp.1571.

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Sacks Oliver. (1985). Sacks Oliver. (1985). The man who mistook his wife for a hat. The man who mistook his wife for a hat. Picador: Picador: London, p.36.London, p.36.

Scheib, K. (2009). ‘”Make love your aim”: Ecclesial Practices of care at Scheib, K. (2009). ‘”Make love your aim”: Ecclesial Practices of care at the end of life.’ Pp.30-58. In J Swinton & R Payne (Eds.). the end of life.’ Pp.30-58. In J Swinton & R Payne (Eds.). Living well Living well and dying faithfully: Christian practices for end-of-life care. and dying faithfully: Christian practices for end-of-life care. William B William B Eerdmans publishing Company: Grand Rapids, Michigan/Cambridge, Eerdmans publishing Company: Grand Rapids, Michigan/Cambridge, UK, UK, p.47.p.47.

Shem, S. Cited in Hitchcock, K. (2014). ‘Bedlam in the ward’. Shem, S. Cited in Hitchcock, K. (2014). ‘Bedlam in the ward’. Review. Review. Weekend Australian, September 20-21, p.20.Weekend Australian, September 20-21, p.20.

Swift C; Handzo G; Cohen J. (2012). ‘Healthcare chaplaincy’pp.185-Swift C; Handzo G; Cohen J. (2012). ‘Healthcare chaplaincy’pp.185-190, In 190, In Cobb M; Puchalski C; Rumbold B. Cobb M; Puchalski C; Rumbold B. Oxford Textbook of Oxford Textbook of Spirituality in Healthcare. Spirituality in Healthcare. Oxford University Press: Oxford, p.185Oxford University Press: Oxford, p.185

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Swinton, J. (2001). Swinton, J. (2001). Spirituality and mental health care; rediscovering a Spirituality and mental health care; rediscovering a ‘forgotten’ dimension. ‘forgotten’ dimension. Jessica Kingsley Publishers: London and Jessica Kingsley Publishers: London and Philadelphia, p.125.Philadelphia, p.125.

Taylor, C. (1994). Philosophical reflections on caring practices, pp.174-Taylor, C. (1994). Philosophical reflections on caring practices, pp.174-187. In S Phillips & P Benner. (Eds.) 187. In S Phillips & P Benner. (Eds.) The crisis of care: affirming and The crisis of care: affirming and restoring caring practices in the helping professions. restoring caring practices in the helping professions. Georgetown Georgetown University Press: Washington DC, p.175.University Press: Washington DC, p.175.

Zeisel, J (2010). Zeisel, J (2010). I’m still here: a breakthrough approach to I’m still here: a breakthrough approach to understanding someone living with Alzheimer’s, understanding someone living with Alzheimer’s, Piatkus: London, p.69.Piatkus: London, p.69.

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