Spiritual care in palliative care: Where are we now? Prof Carlo Leget Vice-President of the European Association for Palliative Care

Egan, R., MacLeod, R., Jaye, C., McGee, R., Baxter, J., Herbison, P., & Wood, S. (2016). Spiritual beliefs, practices, and needs at the end of life: Results from a New Zealand national hospice study. Palliative & Supportive Care, 1-8. Across patients, family members and staff groups: 71% believed in God 82% reported they believed in some form of the afterlife 59% reported believing in paranormal events (Limitations: 89% NZ/European, 4% Maori)

God in the Netherlands A large majority of the Dutch (82%) never or almost never visits a church and only 14% of them believes in a personal God. For many Dutch people Christianity has become an unknown or exotic world.

Spiritual care in health care: where are we now? Workable definitions (US, EAPC, ICC) Growing networks: EAPC, GNSAH, HCC, SCA Good overviews and literature reviews Growing amount of publications Increased attention on international conferences But: hardly evidence based research

Global Network for Spirituality and Health

EAPC Working Definition 2010 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 2. Value based considerations and attitudes (ethics) 3. Religious considerations and foundations

Egan, R., MacLeod, R., Jaye, C., McGee, R., Baxter, J., Herbison, P., & Wood, S. (2016). Spiritual beliefs, practices, and needs at the end of life: Results from a New Zealand national hospice study. Palliative & Supportive Care, 1-8. Definition: top 5 choice for patients and family members: 1. Meaning (P 33%, FM 42 %) 2. Purpose (P 33%, FM 45 %) 3. Beliefs (P 46 %, FM 49%) 4. Values (P 47%, FM 50%) 5. Faith (P 47%, FM 47%)

European survey 2012 (Selman/Young) Study design: cross-sectional online survey of clinicians and researchers in palliative care Delegates (n=6000) of EAPC Lisbon congress and national and international organisations invited to participate by email/bulletin between April and Sept 2012 Survey developed by Taskforce s Research Subgroup Choose and score 5 most important research priorities from list of 15; sum score calculated and priorities ranked by sum score www.csi.kcl.ac.uk

Results: Geographical distribution 971 respondents from 87 countries www.csi.kcl.ac.uk

Ranking of research priorities 1. Evaluate screening tools used to identify patients with spiritual needs 2. Develop and evaluate conversation models for spiritual conversations with patients 3. Evaluate the effectiveness of spiritual care 4. Develop and evaluate spiritual interventions e.g. pastoral counselling, interventions by non-specialist spiritual care providers (doctors, nurses) 5. Determine the prevalence of spiritual distress among patients in different cultural and religious populations Choice of priorities independent of primary area of work and personal religious/spiritual affiliation www.csi.kcl.ac.uk

EAPC white paper on PC education: Core competencies in PC (EJPC 2/3-2013) Expert opinion on global core competencies for professional practice, irrespective of discipline Levels of education: three-tire framework Palliative care approach (not specialised) General palliative care (not main focus) Specialist palliative care (main activity) Not covering the competencies for specialists

EAPC white paper on PC education: Core competencies in PC (EJPC 2/3-2013) 1. Apply the core constituents of PC in the setting where patients and families are based 2. Enhance physical comfort throughout patient s disease trajectories 3. Meet the patient s psychological needs 4. Meet the patient s social needs 5. Meet the patient s spiritual needs 6. Respond to the needs of family carers in relation to short-, medium and long-term patient goals

5. Meet the patient s spiritual needs Palliative care professionals should be able to: 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.

Egan, R., MacLeod, R., Jaye, C., McGee, R., Baxter, J., Herbison, P., & Wood, S. (2016). Spiritual beliefs, practices, and needs at the end of life: Results from a New Zealand national hospice study. Palliative & Supportive Care, 1-8. Spiritual needs of patients and family members: 1. Overcoming fears (P 40%, FM 41 %) 2. Finding hope (P 28%, FM 24 %) 3. Finding meaning (P 30 %, FM 19%) 4. Spiritual resources (P 21%, FM 25%) 5. Peace of mind (P 29%, FM 29%) 6. Meaning of life (P 24%, FM 18%) 7. Death and Dying (P 31%, FM 26 %)

2. Developing Spiritual care as an interdisciplinary field of studies

1. The gap between paradigms Example: Candy, B., L. Jones, M. Varagunam, P. Speck, A. Tookman, M. King. (2012) Spiritual and religious interventions for well-being of adults in the terminal phase of disease (Review). The Cochrane Library 2012, Issue 5. Randomized Controlled Trial 200 years of literature: 5 studies selected, insufficient evidence Effectiveness versus meaning

Action theory (Heijst, A. van (2012). Professional Loving Care. Leuven: Peeters) To care = - To produce, make - To act - To express (goal oriented, effective, efficient) (freedom, originality, uncertainty) (meaning, connectedness, value)

Explaining versus understanding Causality Effectiviness Efficiency Quantitative Univocity (para) Medical sciences Meaning Value Expression Qualitative Metaphor Social sciences Arts and Humanities

2. The lack of a connecting framework Cousins E. (Ed.) (1985-). World Spirituality. An Encyclopedic History of the Religious Quest. (25 Volumes) New York: Crossroad Cobb M, C Dowrick & M Lloyd-Williams (2012). Understanding spirituality: a synoptic view. BMJ Supportive & Palliative Care 2, 339-343

Cobb et al (2012) Spirituality is seen as a feature and capacity of the system as a whole in which people express and experience spirituality individually, through others and through objects that effect and mediate spirituality in the world. The model therefore aims to represent the spirituality of patients and provide an adequate account of how it relates to the internal and external reality of the person including mental phenomena (eg, beliefs), personal and social experiences (eg, illness), and practices and behaviours (eg, meditation).

3. The gap between disciplines Medicine Good opportunities for research funding Large scale human resources, infrastructure (KNMG: 50.000) Strong research tradition Research facilities and journals Strong position in society (urgency, recognition) Dominant position in science ( scientific ) Humanities/ Chaplaincy Problematic research funding Small scale human resources (VGVZ: 1.000) Underdeveloped tradition Lack of journals Marginal position in society Marginal position in science (not science )

3. The gap between disciplines Who are the delegates? 2012 Trondheim 2009 Vienna 2007 Budapest 2006 Venice 2004 Stresa 1992 Brussels 1990 Paris 0% 10% 20% 30% 40% 50% 60% 70% 80% Chaplains Nurses Physicians

4. The gap between theory and practice Research into spiritual care from an academic perspective and theoretical interest Focus on quantitative research, psychometric tools, outcomes, generalizability Search for evidence based knowledge and tools (instruments for screening, etc) Practice of spiritual care from a caring perspective and practical interest Focus on qualitative research (if so), reflection on one s unique setting and practice Search for understanding the phenomenon and human & professional qualities needed to address this dimension

5. The gap between church and society Rise of viewing spirituality as something separated from (non)religious traditions Separation between chaplains and (non)religious institutions ( independent chaplaincy ) Loss of content (traditions, rites, rituals, metaphors, myths, narratives, etc) Separation from traditional networks

(6. Hippocrates versus Asklepios) Randall F & Downie RS (2006). The Philosophy of Palliative Care. Critique and Reconstruction. Oxford: University Press Fundamental questions about the tension between dying as normal part of life and palliative medicine as a medical specialty Medicalization and professionalization of death, dying and bereavement

Question: how do we proceed? 1. Paradigms 2. Connecting framework 3. Disciplines 4. Theory-practice 5. Church society 6. Medicalization

3. Practical tools

An example from the Netherlands: a Dutch guideline for physicians and nurses Translated into English, Spanish, German

The position of spirituality? psycho- social spiritual physical

Crisis Accompaniment Attentiont

What do we know of someone? Spirituality Religiosity Church going (institutional)

What is the question (need, problem, desire, etc)? psycho- social? physical

Resonating with the unspeakable psycho- social spiritual physical

I cannot sit around the table with my children next sunday Physical Psycho- Social Spiritual Description of reality Experience and emotions Connection with identity and life story Sources, inspiration Intimacy and connectedness

Tools: levels 1. Screening All caregivers, no training 2. Spiritual history taking All caregivers, short training 3. Spiritual assessment (interpretative framework) Certified chaplain: long training

FICA (Puchalsky) F: Faith and beliefs I : Importance of spirituality in the patient s life C: Spiritual community and support A: How does the patient wish spiritual issues to be addressed in his or her care

The Mount Vernon Cancer Network The MVCN spirituality assessment tool was launched in October 2007 and is based around three cue questions: 1. How do you make sense of what is happening to you? 2. What sources of strength do you look to when life is difficult? 3. Would you find it helpful to talk to someone who could help you explore the issues of spirituality/faith?

Spiritual Care

Conclusion? I must recognize that not all relief comes from my black bag, but at times must come from within the person JL Hallenbeck, Terminal Sedation: Ethical Implications in Different Situations. Journal of Palliative Medicine 3 (2000) 313-320

To be continued