RESILIENCE AND END OF LIFE CARE Dame Barbara Monroe, CEO St Christopher’s Hospice, London Honorary Professor, International Observatory on End of Life Care, Lancaster University and David Oliviere, Director of Education St Christopher’s Hospice, London
“A universal capacity which allows a person, group or community to prevent, minimise or overcome damaging effects of adversity” (International Resilience Project. Grotberg 1997)
“The capacity to do well when faced with difficult circumstances” (Vanistendael. BICE 2003) Resilience can be enhanced (Almedon. J. Loss & Trauma 2005)
CHILDHOOD RESILIENCE Research interest in 1970s (Anthony and Koupernik 1974) Resilience promoted by: •Strong social support networks •Supportive adult – self esteem •Sense of mastery, believe own efforts make a difference •Capacity to reframe adversity •Ability to make a difference by helping others •Opportunity to develop coping mechanisms – not too sheltered from challenging situations (Newman. Barnardo’s 2004)
WHY IS RESILIENCE IMPORTANT? • Emphasises interaction between individual, family, social and cultural environment • Natural disasters – community level • Offers a unifying concept – a reminder of roots of hospices • Optimism – not defeatism and determinism, possibilities not problems • Seek out and affirm health • Links with agenda on disadvantage and exclusion • Resilient systems – integration health and social care – focus on generalists • Preventive and proactive – not reactive (Seymour & CECO)
NEED, DEMAND, RESOURCE • All settings, all diseases? • Worldwide recession – pressure on health care resource • Reach more for less • Ageing populations – independence • Changing needs and frailty • Social and medical goals • Neglect of carers • Survivorship and rehabilitation • “Dose”/rationing • Efforts to improve individual welfare insufficient on their own
UNDERSTANDING AND PROMOTING COPING & RESILIENCE • Dignity (Chochinok 2007) • Realistic hope (humour, denial and distraction) (Herth J. Advanced Nursing 1990)
• Creative and complementary therapies (Hartley 2012) • Narrative & life review – meaning making (Good memories – telling your story, recognising achievements) (Neimeyer. Bereavement Care 2005); (Nadeau. Sage 2006); Boss. Grief Matters 2006)
• Family focused grief therapy (Supportive relationships – attention to carers) (Kissane. OUP 2002) • Brief Interventions (Monroe & Kraus 2010)
UNDERSTANDING AND PROMOTING COPING & RESILIENCE (cont…) • Cognitive behaviour therapy (Moorey S, et al Psychological Medicine 2008)
• Dual Process Model (Stroebe. Death Studies 1999) • Adult Attitude to Grief Scale (Machin. Bereavement Care 2006)
• Shared ritual and social support (Walter. OUP 1999) • Group work (the Gym) (Harding et al. J.Pall.Care 2002; Schou et al. Psycho‐Oncology 2008)
• Promote confidence ‐ Candle
SENSE OF COHERENCE • Comprehensible – understanding the experience; it makes cognitive sense • Manageable – having the resources to meet needs • Meaningful – finding emotional and spiritual meaning – forgiveness, reconciliation, legacy, ritual (Antonovsky. 1987. Unravelling the mystery of health; how people manage stress and stay well)
• Facilitate telling the story – moving from chaos to a story that can be lived by and lived with (McLeod 1997) • For communities as well as individuals – use cultural resources
RESILIENT COMMUNITIES • Alter public attitudes and enhance community capacity • Wider professional education • Public education and social marketing – use the media – Anniversary Centre • Schools at a variety of levels • Political engagement and employer support • New forms of volunteering and mutual help • User involvement : communities – not just individuals • Service design • Service environment • New forms of information
RESILIENT TEAMS AND ORGANISATIONS • • • • • • • • • •
Policies and procedures Recruitment, induction, mentoring Competencies, standards and appraisal On‐going education and training Clinical review and clinical supervision Formal mechanisms for listening and consulting Well managed meetings Support for innovation (Borrill et al 2001) Clear team objectives The most successful teams… ‘can accommodate a broad range of views on important topics’ (Farsides 2006)
An organisation doesn’t accomplish anything – its people do
ACUTE HOSPITAL PROJECT (QELCA) Personal objectives at start: •Re‐acquaint self and staff with Liverpool Care Pathway (LCP) •Learn more about symptom control In contrast she had learnt: 1.A leader may be someone who has followers but a leader is someone who makes people want to follow them 2.New people on the ward need someone to look after them who knows how to make their experience worthwhile 3.Working together only happens when you work at it