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The ‘tools’ necessary for weaving the Warp and Weft of spirituality in palliative care
Dr Wilfred McSherry Professor in Nursing, Department of Nursing, School of Health and Social Care, Staffordshire University, University Hospitals of North Midlands NHS Trust, England, United Kingdom, ST18 0YB
Part-time Professor VID University College (Haraldsplass) Bergen, Norway
30th May 2018
Objectives• Reflect upon practice situations exploring the ‘Warp and Weft’
of spirituality.
• Explore reasons why the religious, personal and spiritual
needs of individuals are overlooked.
• Highlighting the importance of this dimension for patient care.
• Offer some practice based tools for integrating spirituality
within palliative and end of life care.
A Quote• “I would probably rather tell you
about my sex life than about my
spiritual life. And I’m fairly sure
that you would be more
scandalised to find a bible at the
bottom of my briefcase than a
copy of the karma sutra.”
(Allen 1991pg 52)
Allen C 1991 The inner light.
Nursing Standard 5 (20): 52–53
What is your understanding of the concepts of spirituality and spiritual care?
I would like you to spend a few moments completing the Spirituality and Spiritual Care Rating Scale (SSCRS)
Please note you do not need to share this with anyone and it is for your own personal use – I am also going to ask you to complete this again at the end of the workshop to see if your understanding has changed?
Publication Seminal publication
McSherry, W., Draper, P.,
Kendrick, D. (2002) Construct
Validity of a Rating Scale
Designed to Assess
Spirituality and Spiritual Care.
International Journal of
Nursing Studies 39 (7) p723-
734
Spirituality and Spiritual CareRating Scale (SSCRS)
Australia 1
Bahamas 1
Botswana 1
Brazil 2
Canada 1
Colombia 2
Croatia 2
England 18
Greece 1
Hong Kong 4
Indonesia 8
Iran 3
Ireland 3
Italy 3
Jamaica 1
Japan 1
Jordan 1
Malaysia 4
Malta 2
New Zealand 1
Northern Ireland 1
Philippines 8
Portugal 4
Saudi Arabia 3
Scotland 5
Singapore 1
Slovakia 1
Slovenia 4
South Africa 3
South Korea 1
Sweden 1
Taiwan 4
Turkey 1
USA 70
Wales 1
Total 168
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.”
http://www.who.int/cancer/palliative/definition/en/
The last 1000 days by Molly Case“These days slip away like coins into a slot.
I sit here; the person, the life, the woman that time forgot.
Caught between hospital bays and grey rooms that speak nothing of the life I’ve had.
“These days, these days, always in my memory;
Post Office and tea dance reverie. But recently, hazy as hospital wards become mazes,….
https://www.youtube.com/watch?v=HynytVepxZc
Challenges
Conceptual - Consideration must be given to how people define,
perceive and understand the nature of spirituality
Organisational - people, places and process are central to
understanding spirituality and the provision of ‘spiritual care’ and assessment.
Practical - the practical implications of assessing , planning,
evaluating an individuals spiritual needs
Ethical - the ethical issues and potential dilemmas that may be
encountered when supporting individuals with their spiritual needs
Tools necessary for weaving the
Warp and Weft?
What are the tools
you require to weave
the Warp and Weft of
spirituality in
palliative care?
A scenario
• Question to consider as I am reading:
• What is the model of care evident in the scenario
• Piles, C. 1990 Providing spiritual care Nurse Educator 15 (1) 36 – 41
Standard representation of
holistic care
SPIRITUALITY
Medical Model?
TRAUMA NURSING CARE MANIKIN, Clinical Training Model, medical model ,anatomical model
http://susan0540.en.hisupplier.com/product-291775-TRAUMA-NURSING-CARE-MANIKIN-Clinical-
Training-Model-medical-model-anatomical-model.html
Fenton’s and Mitchell’s (2002, p 21) definition:
“Dignity is a state of physical, emotional and spiritualcomfort, with each individual valued for his or heruniqueness and his or her individuality celebrated.Dignity is promoted when individuals are enabled to dothe best within their capabilities, exercise control, makechoices and feel involved in the decision-making thatunderpins their care.”
Fenton, E, Mitchell, T (2002) Growing old with dignity:
a concept analysis Nursing Practice 14 (4) 19 - 21
Something there?Hay writes:
“It is therefore of interest that in recent years a considerable body of evidence has been accumulating in both the physical and social sciences suggesting that our spiritual nature is real and not illusory. Or many of the people I have spoken with during my research put it ‘there is something’.
[he goes on to say]
… that spiritual awareness is a necessary part of our biology , whatever our religious belief or lack of them.”
2006 pp xi –xii
National care of the dying
audit for hospitals, England
Discussions between clinicians and
patients regarding spirituality in
end-of-life care only occurs in 15
per cent of cases, and in an
additional 27% of cases, people
important to the patient had these
discussions. This suggests that
only in 42% of cases the patient
and those important to them were
asked about their spiritual needs
https://www.rcplondon.ac.uk/projects/outputs/end-life-care-audit-dying-
hospital-national-report-england-2016
Why are we failing to recognise the Warp and Weft of spirituality?
• Misconceptions about them meaning of the concept
• Viewed or perceived synonymously with religion
• Fear of proselytising and reprisal
• Time, busy not enough staff, resources
• Lack of education and training?
• Secularisation of society and healthcare?
Exponential increase in published literature
CINHAL
Spirit*
1st recorded publication: Doherty RE; The professional Spirit American Journal of Nursing, 1937 Apr; 37: 369-72. ISSN: 0002-936X
Between 1937 – 2015 (20,284 results)
Percentage Increase
CINHAL
Spirit*
• 1937 – 1997 (when I completed my MPhil) = 2,437 results
• 1997 – 2015 = 18,256 = 731.39% increase
Literature reviews
• Ross (2006) referred to 45 articles between 1983 and 2005.
• Cockell and McSherry (2012) identified 143 papers, describing studies in 23 countries between 2006 -2010
• Patients were involved in the research described in just 63 of the studies; practitioners were involved in 80.
Cockell, M., McSherry, W. (2012) Spiritual care in nursing: an overview
of published international research Journal of Nursing Management 20,
958–969
Table of countries
Other evidence
Educational preparedness (RCN, 2010)
• 79.3% of nurses felt that nurses do not receive
sufficient education and training in spirituality
(McSherry, 1997 which found that 71.8%).
• 79.9% indicate that spirituality and spiritual care
should be addressed within programmes of
nurse education
Study from AustraliaThirty-one participants described using validated assessment tools. Twenty-four participants stated that they used the HOPE assessment tool while three participants followed Fitchett’s assessment of spiritual needs. The FICA Spiritual Assessment Tool and the Palliative Care Outcome Collaboration assessment tools were each used by one participant. (p 55)
However, 65% of staff agree that they do not receive sufficient education and training in spiritual and religious beliefs (n = 239). (p 57)
Austin, P., MacLeod, R., Siddall, P, McSherry, W and Egan, R (2017)
Spiritual care training is needed for clinical and non-clinical staff to
manage patients’ spiritual needs. Journal for the study of spirituality, 7
(1). 50 -3 http://dx.doi.org/10.1080/20440243.2017.1290031
Selman et al (2017 p 12)
Conclude:
“Our findings provide evidence that spiritual care is an essential but neglected component of care, according to patients and their caregivers across a range of countries. Participants described human connection, person-centredness and integration in healthcare as fundamental to spiritual care. While spiritual care specialists play important roles, including staff support, participants emphasised the importance of spiritual care competency across disciplines. The priorities identified here should be used to guide future spiritual care research and clinical and educational initiatives.”
Lucy Ellen Selman, Lisa Jane Brighton, Shane Sinclair, Ikali Karvinen, Richard Egan,
Peter Speck, Richard A Powell, Ewa Deskur-Smielecka, Myra Glajchen, Shelly Adler,
Christina Puchalski, Joy Hunter, Nancy Gikaara and Jonathon Hope; the InSpirit
Collaborative (2017) Patients’ and caregivers’ needs, experiences, preferences and
research priorities in spiritual care: A focus group study across nine countries
Palliative Medicine 1-15
Ross et al (2018 p 70)
“Our findings from a longitudinal multinational quantitative survey provide the first evidence that perceived spiritual care competency improved slightly but significantly over the course of our sample's studies and that a high sense of personal spirituality and a broad view of what spirituality/spiritual care were about were important factors in that improvement.”
Ross, L., McSherry, W.,Giske, T., van Leeuwene, R., Schep-Akkermane, A.,
Koslander, T., Hall, J., Østergaard Steenfeldth, V., Jarvis, P. (2018) Nursing and
midwifery students' perceptions of spirituality, spiritual care, and spiritual care
competency: A prospective, longitudinal, correlational
European study Nurse Education Today 67 (2018) 64–71
https://authors.elsevier.com/c/1X1jpxHa5G~Zr
Telegraph reports
Christian nurse sacked for offering to pray with patients was just showing 'compassion', tribunal hears
https://www.telegraph.co.uk/news/he
alth/news/4409168/Nurse-
suspended-for-offering-to-pray-for-
patients-recovery.htmlhttps://www.telegraph.co.uk/news/2017/03/30/ch
ristian-nurse-sacked-offering-pray-patients-just-
showing-compassion
Royal College of Nursing Survey
28) “I feel currently out of pressure of work nurses do not have enough time to
spend with their patients/clients to address spiritual issues. I also believe there is a
lot of cultural issues related to this and at times this creates a barrier. I also feel
there is no freedom of expression for fear of "imposing" one's view yet sometimes its
in sharing that someone would gain spiritually.”
1474) Given recent media coverage e.g. Caroline Petrie case, further guidance is
definitely needed
1914) I have been very disturbed by recent cases, eg Mrs Petrie. I have always
been open about my own faith, though not pushy, but have found it at times
appropriate to raise the topic with some patients at certain times. The Petrie case
disturbed me as I thought I also would be open to similar attack if someone decided
to pursue it.
Identifying the Warp and the Weft
Stoll’s (1987) The person’s spiritual interrelatedness (two dimensional model)
The vertical dimension (The Warp) ‘as do with the person’s transcendent (beyond and/outside self) relationship, the possibility of a person-relatedness to a higher being-God-not necessarily as defined by a particular religion
The horizontal facet reflects and fleshes out the supreme value experiences of one’s relationship with God through one’s beliefs, values, life-style, quality of life, and interactions with self, others and nature vertical
Stoll, R, I. (1989) The essence of spirituality, in Carson, V, B. (editor)
(1989) Spiritual dimensions of nursing practice, Philadelphia: W B
Saunders Company. Chapter 1 pages 6-8
A couple of useful guides
Definitions of spirituality-in-healthcare
Murray & Zentner (1989 p 259)
“A quality that goes beyond religious affiliation,that strives for inspirations, reverence, awe,meaning and purpose, even in those who do notbelieve in any good. The spiritual dimension triesto be in harmony with the universe, and strivesfor answers about the infinite, and comes intofocus when the person faces emotional stress,physical illness or death.”
McSherry (2009) Definition of Spirituality
Spirituality is universal, deeply personal and individual;
it goes beyond formal notions of ritual or religious
practice to encompass the unique capacity of each
individual. It is at the core and essence of who we are,
that spark which permeates the entire fabric of the
person and demands that we are all worthy of dignity
and respect. It transcends intellectual capability,
elevating the status of all of humanity.
McSherry, W. Smith, J (2012 p 118) Spiritual Care In McSherry, W.,
McSherry, R., Watson, R. (Eds) (2012) Care in Nursing Principles values
and skills Oxford University Press, Oxford
Puchalski et al 2014 p 646
After a robust and dynamic discussion
with several rounds of voting, agreement
was reached on the following definition
of spirituality:
‘‘Spirituality is a dynamic and intrinsic
aspect of humanity through which
persons seek ultimate meaning,
purpose, and transcendence, and
experience relationship to self, family,
others, community, society, nature, and
the significant or sacred. Spirituality is
expressed through beliefs, values,
traditions, and practices.’’
Puchalski, C, M., Vitillo, R., Hull, S, K., Reller, N. (2014) Improving the
Spiritual Dimension of Whole Person Care: Reaching National and
International Consensus, Journal of Palliative Medicine, 17(6): 642–656.
EAPC Task Force on Spiritual Care in Palliative Care
Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred.
The spiritual field is multidimensional:
1. Existential challenges (e.g. questions concerning identity, meaning, suffering and death, guilt and shame, reconciliation and forgiveness, freedom and responsibility, hope and despair, love and joy).
2. Value based considerations and attitudes (what is most important for each person, such as relations to oneself, family, friends, work, things nature, art and culture, ethics and morals, and life itself).
3. Religious considerations and foundations (faith, beliefs and practices, the relationship with God or the ultimate).
http://www.eapcnet.eu/Themes/ProjectsTaskForces/EAPCTaskForces/
SpiritualCareinPalliativeCare.aspx
Ireland’s own
“Spirituality is a way of being in the world in which
a person feels a sense of connectedness to self,
others, and/or a higher power or nature; a sense of
meaning in life; and transcendence beyond self,
everyday living, and suffering.”
Weathers, E., McCarthy, G., and Coffey, A (2016) Concept analysis
of spirituality: An evolutionary approach, Nursing Forum’, 51(2): 79-
96.
Distinguishing Religion and Spirituality
Adapted from (Koenig et al 2001 p 18)
• Community Focused Individualistic
• Observable measurable, objective Less visible and measurable,
more subjective
• Formal orthodox, organized Less formal, orthodox, less
systematic
• Behavior orientated, outward practices Emotionally orientated,
inward directed
• Authoritarian in terms of behavior Not authoritarian, little
accountability
• Doctrine separating good from evil Unifying, not doctrine
oriented
Religion Spiritual
Koenig H G., McCullough M E., Larson D B (2001) Handbook of
Religion and Health Oxford University Press Oxford
Dementia based-scenario
• I would like you read through this dementia based scenario:
• Then in pairs I would like you to identify the Warp and the Weft of spirituality in this situation?
Warp and Weft of spirituality?
Existentialism: the way individuals derive and find meaning, purpose and
fulfilment in life.
Relationship: the relationships that are significant to an individual’s sense
of identity, health and wellbeing – these could be relationships with family,
friends, the environment, community and creatures
Transcendence: a sense of something greater and beyond self this could
be God, deity, supreme being or Higher Power. It could also be aspects of
life that enable the individual to transcend themselves or situations.
Connection: the sense of connection individuals have within themselves,
with others, the environment and for some God or higher Power
Religiosity: for some people their spirituality and worldview is based upon
adherence to a specific religious teaching, doctrine and practice. These
inform and influence belief, attitudes, values and behaviours.
McSherry, W. (2016) Reintegrating spirituality and dignity in nursing and health
care: a relational model of practice In Tranvåg, O, Synnes, O, McSherry, W. (2016)
(Eds) Stories of Dignity within Healthcare: Research, narratives and theories, M&K
Publishing, Keswick. Chapter 6 pages 75 - 96
RCN (2010) Spirituality is about:
• Hope and strength
• Trust
• Meaning and purpose
• Forgiveness
• Belief and faith in self, others and for some this includes a
belief in a deity/higher power
• Peoples values
• Love and relationships
• Morality
• Creativity and self expression
Sheldrake (2014 p1)
“It seems that, as human beings, we are persistently driven by goals beyond mere material satisfaction to seek deeper level of meaning and fulfilment.”
Sheldrake (2014) 4 typologies (Types of spirituality)
Ascetical The mystical
The prophetical The practical
Spirituality
Sheldrake (2014) 4 typologies (Types of spirituality)
• Ascetical: liberation from material preoccupations and a deepened moral behaviour (p14. Discipline and non religious practice of meditation, mindfulness (p168)
• Mystical: a quest for an immediate consciousness of , or sense of a deep connection with, God or the ultimate depths of existence… way of ‘knowing’ that transcends purely rational analysis (p15)
• Practical: promotes the everyday world as the main context for following a spiritual path (pp15-16)
• Prophetic: while equally focused on the everyday world, goes beyond the practical service of our fellow humans in favour of social critique and commitment to social justice as a spiritual task. (p16) Finally the critical-prophetic ‘type’ is arguably detectable in some discussions of spirituality in relation to renewed vision of human care in the health professions…(p168).
For me spirituality is absent when:
• It devalues, diminishes the identity of the person, leading to a violation of their dignity
• Leads to an intentional destruction of human life, communities, societies, environments, natural world
• Ideologies that are divisive, oppressive, disempowering, promoting propaganda that lacks sensitivity and respect for equality diversity and fundamentally upholding of human rights
Palliative care setting
“When people are admitted on to the unit you are only going to get a certain amount of information. It could be that somebody comes in with pain so that’s you’re priority you’ve got to address that. They are not really going to want to talk about you know their philosophy of life and that when they are actually in excruciating pain. So you’ve got to be you know sort of realistic. But that can be built up over a time and things could be ongoing not just admission written in tablets of stone and that’s how it stays until they actually leave here in which you know which ever way! It’s an ongoing thing you know and that’s because patients will talk to certain people, where they won’t talk to others and that’s just personality.”
(Charge Nurse Palliative Care)
Identify patients spiritual needs
(RCN, 2010)
Method No %
Patient themselves 125 89.9
Relatives/friends 92 66.2
Nursing documentation 66 47.5
Other colleagues 43 30.9
Chaplain 45 32.4
Listening and observing 121 87.1
Sensing/hunch 64 46.0
Spiritual assessment tool 3 2.2
It is not the nurses role to identify
patients’ spiritual needs
6 4.3
Approaches to spiritual assessment
• Formal (active)
• Informal (passive)
Categorisation of approaches to
spiritual assessment
Direct method
Asking direct questions about the individuals religious or spiritual beliefs to elicit information about potential
spiritual need.
Indicator
Based
The indicator based model of spiritual assessment reflects the Spiritual Diagnosis – Spiritual Distress
approach to spirituality presented in the work of Carpenito (1983, p. 451) who identifies defining
characteristics that may indicate underlying spiritual distress, for example, expresses concern-anger,
resentment and fear over meaning of life, suffering, and death.
Audit Tools
Increasing numbers of institutions are attempting to assess the effectiveness of practitioners in providing
spiritual care. Many health care institutions are setting their own standards and actively monitoring and
auditing areas of religious and spiritual needs to establish if they have been addressed.
Value
Clarification
Likert type scales asking respondents to state the extent to which they agree or disagree with a particular
statement. These tools are quick to administer, providing the researcher with some quantifiable measure or
students with an insight into their own values and perceptions of the concepts being investigated.
Indirect
Methods
Observational methods are used by practitioners to gather information from a variety of sources to
establish the presence of a spiritual need. If observation is used, consensus must be reached concerning
who observes what signs are looked for, how these signs are interpreted and if/how they are documented.
Acronym
Based Models
These are models or frameworks that focus practitioners attention to specific areas associated with
spirituality or spiritual care for example PLAN (Highfield, 1993) FICA, (Puchalski and Romer, 2000) HOPE
(Anandarajah and Hight, 2001). These models are designed to be quick, flexible and incorporated within
the general assessment process.
Direct questioning (Stoll 1979)1. ‘Concept of God or Deity’
Examines theistic and to some degree religious elements
Examples of questions ‘Is religion or God significant to you?’ ‘Is prayer helpful to you?’
‘What happens when you pray?’
2. ‘Sources of Hope and Strength’
Investigates sources of support, particularly surrounding people and relationships
Examples of questions ‘Who is the most important person to you?’ ‘To whom do you turn when you need help?’
3. ‘Religious Practices’
Reviews the impact that an illness might have on the patient’s ability to maintain religious practices
Examples of questions ‘Do you feel that your faith (religion) is helpful to you?
‘Are there any religious practices that are important to you?’
4. ‘Relationship Between Spiritual Beliefs and Health’
Explores existential issues such as the patient’s concerns or visions for the future
Examples of questions ‘What has bothered you most about being sick (or in what is happening to you)?’ ‘What do you think is going to
happen to you?’
Indicator based
Spiritual/Religious Audit
AcronymNarayanasamy,1999, 2001 ASSET Model (Actioning spirituality and spiritual care education and training in
nursing) ACCESS Model:
A: Assessment
C: Communication
C: Cultural negotiation and compromise
E: Establishing respect and rapport
S: Sensitivity
S: Safety
Puchalski and Romer 2000 Acronym FICA
F: Faith or Beliefs
I: Importance and influence
C: Community
A: Address
Anandarajah and Hight 2001 Acronym HOPE
H: sources of hope, meaning, comfort, strength, peace, love and connection
O: Organised religion
P: Personal spirituality and practices
E: Effects on medical care and end-of-life issues
Your help – the 2QSAM
© Ross and McSherry 2017
‘What is important to you right now?’
and ‘How can we help?’
Let us know how you do:[email protected]
Physical
Spiritual
Psychosocial
Hierarchy of support
Expressing
Listening
Presence
Religious/specialist
McSherry, W. (2007 p 232) The Meaning of Spirituality and Spiritual
Care within Nursing and Health Care Practice Quay Books, London
“We get treatment in the
hospital and care in the
hospice”
Treatment
Scientific
Proficient
Technical Competence
Detached
Robotic
Cold
Care or more precisely
caring
Warm
Time
Presence
Valued
Accepted
Recognise the person
The little things are the big things!
• In that sense, ‘the little things’ are the ‘big things’ and should receive increased focus in nurse education, practice settings and orgnizational management.
WILLIAMS V . , KINNEAR D. & VICTOR C. ( 2016) ‘It’s the little things
that count’: healthcare professionals’ views on delivering dignified care:
a qualitative study. Journal of Advanced Nursing 72(4), 782–790. doi:
10.1111/jan.12878
What are the little things:
• A introduction – hello my name is…
• A smile
• A warm word of welcome
• A how are you?
• A please and thank you?
It is our: demeanour, professionalism, openness, courtesy, respect, approach,
Clarke 2013 p 193
“Hopefully my inadequate voice will inspire others to take this vision and to develop ever more creative ways to explore the true relationship between spirituality and nursing – not only to develop spiritual care, because that would be a very limited goal, but rather to use the concept of making all care spiritual to develop and improve everything that nurses do.”
Clarke, J (2013) Spiritual Care in Everyday Nursing Practice A New
Approach, Palgrave Macmillan, London
ConclusionIf we are to be successful in recognizing the Warp and Weft of
spirituality then:
•We must be aware of the Warp and Weft of spirituality within
our own lives
•Acknowledge this is a multidimensional, subjective and
complex concept yet central to the lives and identity of many
people
•This dimension focuses our attention on the individual, the
person, not just the medical condition or treatment
Enhancing Nurses Competence in Providing Spiritual Care through
Innovative Education and Compassionate Care
Coming together from across Europe to shape the future of spiritual care education and to enhance compassionate care
Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
www.epicc-project.eu
Countries represented
Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-024467
• UK: England, Scotland, Wales, (Northern Ireland) • Croatia• Norway• Netherlands• Poland• Turkey• Ireland• Malta• Denmark• Germany• Belgium• Ukraine• Greece• Columbia• Thailand• New Zealand
What are we trying achieve
Three named outputs:
O1 - Establishing and sustaining the EPICC project – lunching the EPICC Network
O2 Developing a Gold Standard Matrix for Spiritual Care Education and Adoption Toolkit
O3 Refining and disseminating the Gold Standard Matrix for Spiritual Care Education and Adoption Toolkit
Erasmus+ KA2 Grant Agreement Number: 2016-1-UK01-KA203-
024467