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Outline • What we bring: mapping assets • Key issues: seeking collective wisdom • Finding our place: in collegial practice, in organisational structure, in policy
Spiritual Care in Palliative Care SCA Conference, Melbourne, May 2, 2016
Bruce Rumbold, Palliative Care Unit, Department of Public Health
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Core issues in practice European perspectives
EAPC survey of spiritual research priorities Responses from 971 practitioners, including 293 palliative physicians, 112 nurses, and 111 chaplains, received from 87 countries (Selman L., Young T. et al 2014). Priorities for research were identified as:
EAPC competencies and research priorities
1. Development and evaluation of conversation
models and overcoming barriers to spiritual care in staff attitudes 2. Screening and assessment 3. Development and evaluation of spiritual care interventions and determining the effectiveness of spiritual care 3
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Spiritual conversation models and staff attitudes
Spiritual assessment and screening
• What occurs in current practice?
• What is the exact concept being assessed?
• What are staff members' experiences of and attitudes towards spiritual conversations?
• What assessment is appropriate in diverse groups?
• What are the barriers to conversations? • How effective and cost effective are spiritual conversations? • What are patients' preferences regarding spiritual conversations?
• What tools exist, what are their limitations, and when should they be used? • How effective are screening and assessment? • What are patients' preferences regarding screening and assessment? • What training and support do staff need?
• What training and support do staff need? • What impact does staff training and education have?
Effectiveness of spiritual care and spiritual care interventions
EAPC core competencies in palliative care: No
• What are the aims, objectives, components and outcomes of spiritual care?
Palliative care professionals should be able to:
• What are the best methodologies to study effectiveness? • Which interventions and models exist and what are their characteristics?
5, meet patients’ spiritual needs 5a
demonstrate the reflective capacity to consider the importance of spiritual and existential dimensions in their own lives
5b
integrate the patients’ and families’ spiritual, existential and religious needs in the care plan, respecting their choice not to focus on this aspect of care if they so wish
5c
provide opportunities for patients and families to express the spiritual and/or existential dimensions of their lives in a supportive and respectful manner
5d
be conscious of the boundaries that may need to be respected in terms of cultural taboos, values and choices
• How effective and cost effective are spiritual care models/ interventions? • What are patients' understandings, preferences and expectations regarding spiritual care .... • What impact do staff education and support models have? • What is the role of the team in providing spiritual care?
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Finding our place in collegial practice
Spirituality involves relationships With places and things (spatial) With self (intra-personal)
Enlisting the listening skills of colleagues: the relational web
With others (inter-personal) Among people (corporate) With transcendence (‘God’,‘Something There’) Lartey, E.(1997) In living colour: an intercultural approach to pastoral care and counselling, London, Cassell, 113.
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Spiritual care involves: • Screening - mapping (and documenting) a person’s web of relationships • Assessing – if feasible, exploring possibilities and needs with the person • Developing strategy – interventions that involve settings, stories, and systems of belief
Relational Web Spatial, corporate, inter-personal, intra-personal, transcendent relationships
Triggers What’s important to me? Who is important to me? What helps to keep me centred / at peace? What things in my community do I feel connected to? What places and things are special to me? How do I see /identify myself (eg mother, teacher, confidant, spiritual being, courageous …..)
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Strategies for spiritual care • Settings • Stories • Systems of belief
Strands of the Web
Positive Relationship
Lost Relationship
Negative Relationship
Transcendent: The Other
“My faith’s all I’ve got left now”
“Hard to feel God’s presence”
“Bloody angry with God when Bert died” “cheated”
Self:
“Getting used to being still”
“I was very active”
“I’m a useless old thing now”
Interpersonal:
“Dulcie {neighbour} Bowling club is my best friend” Bingo group
Society:
A member of the Labour movement all my life
The neighbourhood “After we moved . . Never in which I grew up felt we quite belonged”
Places & things: spatial
Bedroom window “sky”
Garden “miss my veggies”
Estranged sister “speaks in tongues” “not my scene”
Hospital “I’m just another body”
Settings • Where does the person feel safe? • Staying connected with this safe place? – Pictures – Mementos – Religious symbols – Recollection – Visits – Reports from others – Electronic links (images, video feed, Skype ...)
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Stories
Systems of belief
• • • •
• Enquire about rituals and beliefs • Ask person and/or family to coach caregivers • Arrange visits from an appropriate religious practitioner • Prepare for any end-of-life rituals that are requested
Listen to the stories Explore their significance Enquire about missing storylines Encourage them to represent these stories (write, record, draw . . . )
Population Health
Finding our place in organisational structures
Tiered models of care
All patients Many patients Some patients INFORMAL CARE
Few patients
SELF-CARE
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Level One
Level Two
Care needed by all: person-centred care.
Care needed by many: person-centred care sensitive to the spiritual domain.
Competency to provide this care: all practitioners (staff and volunteers) who have casual contact with patients and families should have basic skills of awareness, relationships and communication; understand that all people have spiritual needs and be able to distinguish spiritual and religious needs; and be able to refer concerns to members of the multidisciplinary team. Screening is likely to be unobtrusive – alert to spiritual issues rather than enquiring about them.
Competency to provide this care: practitioners whose duties require contact with patients and families/carers have level one skills with, in addition, increased awareness of spiritual and religious needs, and how these may be identified and responded to. Screening more likely to include direct enquiry about spiritual concerns.
Level Three
Level Four
Care needed by some: care that addresses spiritual and religious issues.
Care needed by a few: care for complex spiritual and religious needs.
Competency to provide this care: practitioners who are members of the multidisciplinary team, have training to assess spiritual and religious need, and to develop care plans to respond to spiritual, religious and ethical issues. Competency in recording sensitive and personal patient information is required as this level.
Competency: practitioners whose primary responsibility is for the spiritual and religious care of patients, families/ carers. These people are able to work with complex spiritual and religious need, particularly need arising from people’s encounters with finitude and death; able to journey with others, focusing on the needs and agendas of those others; are equipped to liaise with external resources as required; and can act as a resource for support, training and education of practitioners working at levels one to three. Rumbold B. (2013)
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Finding our place in policy
Victoria - where are we now Government
End of Life Care Frameworks Ottawa Charter: health promoting pastoral care
•
Palliative care funding $120M in 2015-16
•
21 health services supporting 289 beds
•
31 community palliative care services in rural, regional & metro Melbourne
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Medical training program, nurse practitioners & volunteers
Policy framework •
Strategic focus on building palliative care service capability across Victoria
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Establishing and fostering interdisciplinary specialist palliative care
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Best practice guidelines and research
•
Carers
•
Access & equity for CALD and Aboriginal people
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Where do we want to go
Community voice •
People want care to be provided as close to home as possible
•
People want access to acute like services at home » pain relief
A future where services are wrapped around people, not providers, or institutions; where preference is taken into account, based on honest information about survival and complications; where dignity and comfort are respected; and where quality of life matters most.
» fluid replacement » supportive care; and » 24/7 on-call supports. •
People want to be involved in decisions regarding their end of life care
•
Carer support
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How do we get there
Government commitments
New policy framework
Victorian Government has committed to undertaking two key reforms to support end of life care choices:
• End of Life Care framework • Community and sector consultation to inform: Ø Identify what practical improvements can be made to support people’s choices about end of life care looking at the; Ø How to better equip services to deliver quality end of life care to individuals and their families; and
• Enabling the statutory recognition of advance care directives so competent Victorians can document treatment preferences for existing and/or future conditions and articulate their end of life care wishes; and • Undertake a program of appropriate improvements to palliative care services to provide responsive, appropriate and innovative home-based care models.
Ø What system changes are required to deliver a better integrated service that supports people to be cared for in their place of choice and die in their place of choice.
Victoria’s End of Life Care policy framework
OTTAWA CHARTER 1986 The New Public Health
Key focus areas of the End of Life Care framework will include: • Improving access to specialist palliative care
In promoting health we must:
• Eliminating the mismatch between what patients want and what is provided
Enable, mediate, advocate
• Improve specialist palliative care capacity
Create suppor?ve environments
• Increase knowledge about of end of life care amongst all clinicians and services
Strengthen community ac?on
• Reduce fragmentation across service delivery
Develop personal skills
• Build community capacity outside health services
Reorient health services
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Health Promo?ng Pastoral Care 1. Promote, advocate and educate for assets-based approaches to health 2. Encourage individuals to identify, develop and use their knowledge, skills in supportive relationships 3. Develop sustainable communities characterised by compassion 4. Develop partnerships, especially with public health and community development 5. Pursue equity: confront injustice and inappropriate uses of power
Strategy: pastoral care as partnerships • Forming partnerships that add value, encourage resilience and promote coherence • Assets-based, not just problem-based, approaches to care • Collaborations across and beyond disciplines, and across and beyond medical and religious institutions • Attention to natural networks of support as well as professional networks that may be required
References Puchalski, C., Ferrell, B. et al. 2009. Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine 12(10): 885-904. Rumbold, B. (2013). Spiritual assessment and healthcare chaplaincy. Christian Bioethics. doi: 10.1093/cb/cbt027 Selman S., Young T. et al (2014). Research priorities in spiritual care: An international survey of palliative care researchers and clinicians. Journal of Pain and Symptom Management, accepted for publication
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