A Palliative Approach to Spiritual
Support in Residential Aged Care
Professor Linda Kristjanson
The Cancer Council WA Chair of Palliative
Care
Outline
 Palliative approach in the context of
residential aged care
 Key affecting spiritual care in palliative
aged care (eg, dignity, cognitive
impairment, bereavement)
 How to assess spiritual needs and provide
spiritual support
Palliative Approach
 Reduces suffering and improves quality of
life
 Embraces an open and positive attitude
toward death and dying
Palliative Care (WHO, 2003)
‘An approach that improves the quality of
life of patients and their families facing the
problems 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.’
Need for a Palliative Aged Care
Approach
RACFs have steadily increased as the sites
where death occurs
RACFs the residents are more likely to have a
diagnoses of dementia, cardiovascular disease,
haematological conditions, arthritis, lung
disease.
Australian Palliative Residential
Aged Care Project
Australian Department of Health
& Ageing
www.apracproject.org
APRAC Project
 Component I: Development of national
guidelines for palliative care in RACFs
 Component II: Development of a national
education and training program
 Component III: Options for communication
and implementation of the guidelines and
the education and training program
National Involvement
 32 investigators - five states
 Reference Group
 National Consultative Network - 800 people
Reviewing the Evidence
 Searches
 Exclusion Criteria
 Evaluation Strategies
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Level of Evidence
Quality of Evidence
Strength of Evidence
Relevance of Evidence
Feedback and Testing Steps
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Educational Survey
Delphi Surveys
Focus groups - all states and territories
National Consultative Network
Useability trials
Recording and consideration of all feedback
Palliative Approach in Aged Care
 70% increase in the next 30 years in
numbers of frail elderly
 neurological, musculoskeletal, respiratory,
circulatory difficulties and co-morbidities
 decreased capacity for self care, mobility
and communication
 increase in 75-94 year aged group by 2021
Three Types of Palliative Care
 Palliative care approach
 Specialist palliative care teams
 End of Life Care
Spirituality in Residential Aged
Care
 Spiritual beliefs contain tenets about the course of
human life and existence beyond it.
 Impending death prompts spiritual questions
 Particular challenges given cognitive changes,
threats to sense of dignity and meaning, and
uncertainties about how to provide bereavement
support.
Cognitive changes
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162,000 Australians with dementia in 2002
estimated 500,000 by 2040
2nd largest cause of disability
by 2016 dementia is expected to be primary
cause of major chronic illness
 30% presently in low care, 60% in high care
 only 10% of high care residents have no
cognitive impairment
Advanced Dementia
 neurological deterioration
 irreversible
 swallowing difficulties, weight loss,
anorexia, bowel and bladder incontinence,
becoming bedridden.
 estimate that average time from diagnosis of
advanced dementia is 2- 3 years
Cognitive Impairment &
Spirituality
 Is cognitive function necessary for spiritual
life?
 How does a change in cognitive awareness
affect spirituality?
 How does a loss of cognitive capacity affect
communication about spiritual issues?
 How important is memory to spirituality?
How do cognitive limits affect
spirituality and spiritual support?
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Most of our “therapies” are “talk-based”
Logic and polite conversations are the norm
80% of communication is non-verbal
“There is no such thing as non
communicating” (Watzlawick, 1973).
 Therefore, spiritual support is difficult, but
may be possible when usual communication
channels are impaired.
Connecting in the face of
cognitive changes
 Emotion is discernible
 Need for closeness and acceptance and positive
regard is easy to read
 Humour and warmth helps glue an interaction
together
 Listen with “third ear”, watch with “third eye”
 Release from notions of perfection
 Being fully present in the moment
Dignity
 Dignity is a touchstone of palliative care
and is linked to spiritual support
 Important in the context of spirituality,
sense of purpose, meaning, self-worth, and
relationships.
 Threat to one’s sense of dignity and purpose
are therefore relevant to spiritual care.
 Different views of what constitutes dignity.
Dignity Support: An Intervention
to Support Quality of Life and
Ameliorate Distress at the Endof-Life
Prof Linda Kristjanson
Prof Harvey Chochinov
Dr Lynn Oldham
Ms Jo Hale
Dr Kevin Yuen
Dignity Conserving Model of Care
 Illness/ageing-related issues,
 Dignity-converting strategies
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dignity preserving perspectives (eg, outlook,
pride, continuity of self, hopefulness)
dignity enhancing practices (eg, prayer,
meditation, one day at a time)
 Social dignity inventory 
eg, aftermath concerns, care tenor
Social Support
Care Tenor
Generativity
Dignity Support
Aftermath Concerns
Continuity of Self
Maintenance
of Pride
Maintaining Hope
Role Preservation
The Support Approach
 Taped sessions
 patients asked to speak about various aspects of
their life
 asked a series of questions based on the dignity
model which focus on things that they feel are
important or things they would like remembered
 tape is transcribed, edited and returned as a “life
manuscript”
 provide a legacy for the family, honours the
person
Results and Experiences
 Highly effective
 helps people prepare for death, heighten
sense of dignity, increase will to live, helps
prepare family for future
 decreased anxiety, depression
 sense of purpose/or meaning enhanced
 foster family communication
 non-medication related approach that
appears promising
Aged Care Pilot Study
 Explore the feasibility of having family and
resident participate together in co-constructing a
generativity document.
 Family members will construct the generativity
document by proxy.
 Generativity documents will be provided with the
residents and family’s permission to the health
care team as a ‘perception altering strategy’,
possibly enhancing their appreciation for the
resident.
Bereavement Support in the Context of
Palliative Aged Care - Beliefs &
Premises
 Grief is usually a lifelong and a life changing
experience
 Recent controversy in the literature about how to
best provide bereavement support
 Studies limited by poorly articulated theoretical
frameworks, measurement difficulties, and
differences in populations and approaches to
support offered.
 Conclusions about best practice clouded by
research limits.
Bereavement Support
 Linked to questions of spirituality, meaning,
relationships, loss, hope, loneliness, and
uncertainty.
 Stages of grief are now being questioned as is
previous language that “judged” the timing and
progress of people who are grieving (eg,
pathological grief, delayed grief, complicated
grief, unresolved grief)
 Focus instead on integrating grief and loss rather
than “getting over it” or “moving on”
Enduring Grief
 Loss becomes part of our biological structure in
the shape of grief (Mataurana & Barela, 1992;
Goodkin et al, 2001)
 Grief is a biological experience as well as an
emotional, spiritual and cognitive one.
 As a result, grief becomes an enduring, sometimes
relenting, sometimes poignant, but always present
part of the life of a person who has lost.
Grief Involves Moving Forward by
Walking Backwards
 Grief is about writing a history rather than
drawing a map (CS Lewis, 1961)
 Grief invites us to look back, to remember.
 We willingly and necessarily in grief, walk back
into time and history, recalling when the one who
died was physically present.
 At the same time, we learn how to continue to live
and to move ahead. This is a map-less journey.
 To grieve is to learn the art of “walking
backwards”
Bereavement Support Challenges
 Bereavement support for other residents
 Bereavement support in context of
advanced dementia
 Bereavement support for families
Palliative Approach to Loss & Grief in
Residential Aged Care
 Acknowledging the many losses, sorrow and grief
 Anticipating the enduring and repeating feelings
of loss and grief
 Remaining present
 Focused attention on the carers and family
 Accompanying the process of walking backwards,
noting the bumps on the road - helping to create a
safe passage
How do we assess spiritual needs and
provide most appropriate support?
 Spirituality has been found to be a predictor of
quality of life
 Impending death prompts questions about
spirituality and meaning
 Early assessment of need is important
 Assessment must be ongoing
 Current, desired practices, attitudes, expectations
and beliefs
 More than a recording of religious affiliation
Possible Questions
 How are you in yourself?
 What is your source of hope and strength?
 What are your spiritual needs?
 Are there ways in which we might help you
with your spiritual needs or concerns?
Things to observe or look for:
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Social isolation
Depression
Questions about meaning of existence
Seeking spiritual assistance
Attendance at spiritual services
Religious items or practices
Spiritual Assessment
 Social/family history may help identify past
and present resources for spiritual support
 Best conducted in a trusting environment by
a person with adequate interpersonal skills,
conversational style
 Regular review
 Respect for spiritual practices
 Spiritual counselling and support
Spiritual Care
 Assisting residents to articulate those things
that are important to them personally
 Sensitive listening, rather than providing
answers
 Not necessary to share same beliefs
 Care to not impose spiritual views
 Awareness of feelings of isolation that may
occur at end of life
Spiritual Support
 Silent support
 Liaison
 Active Listening
Spiritual Care
 Chaplains and pastoral care workers advocated in the
guidelines
 Recent UK study (N=1500)
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73% requested support from someone of the Christian
faith
 14% from other faiths
 67% of RACF manager felt that this would help the
resident
 Team may perceive increased spiritual needs
 Chaplains/pastoral care workers need to be integral
members of the team
Guidelines - Spiritual Support
 A palliative approach supports residents and
families to express their unique spirituality.
Respecting their privacy and providing an
opportunity for them to continue their
spiritual practices enhances a resident's
spiritual care and their quality of life, as
does spiritual counselling.
Guideline -Spiritual Support
 Understanding the resident’s current or
desired practices, attitudes, experiences and
beliefs by obtaining a comprehensive
history, assists in meeting the spiritual needs
of a resident, as does a regular review.
Guideline -Spiritual Support
 The aged care team is encouraged to
respond in an open, non-judgemental
manner to residents’ questions relating to
spiritual matters. Involving a
chaplain/pastoral care worker with
experience and knowledge about these
issues is considered best practice.
Summary
 promote the dignity of those for whom we care,
 maintain a connection and a support to those with
cognitive impairment,
 help families keep their spirits strong amidst
layers of accumulative grief and loss,
 assess respectfully the spiritual needs of residents
and how to respond in a way that is helpful, and
 how do we help support the spirit when
bereavement occurs and questions of meaning reemerge?
You matter because you are you, and you matter until
the last moment of your life. We will do all we can,
not only to help you die peacefully, but also to live
until you die (Dame Cicely Saunders, 1993).
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A Palliative Approach to Spiritual Support in Residential Aged Care