working appreciatively in end-of-life care
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Working apprecia-vely in end-‐of-‐life care: An interven-on to promote collabora-ve working between care home staff and health care prac--oners 1Caroline Nicholson, 2 Elspeth Mathie, Sarah Amador, Ina
Machen, Claire Goodman (PI) 1.Na&onal Nursing Research Unit, Florence Nigh&ngale School of Nursing and Midwifery, King’s College London. 2. Centre for Research in Primary and Community Care (CRIPACC), University of HerJordshire
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AI and Dying
“You maNer because you are you. You maNer to the last moment of your life, and we will do all we can not only to help you die peacefully but to live un&l you die. (Cecily Saunders)
• Excep&onality • Essen&ality • Equality
Images of the future guide us What are our strongest images of old age?
Connec-ng across Systems
Care Homes in the U.K. are home to over half a million older people They are oOen seen as islands of the old Most care is provided by care staff who receive liPle training, financial payment or recogni-on for their work Dying in care homes is seen as a problem to be fixed by the medical and nursing profession : the answer is seen as providing training to care homes Doing to rather than with The extraordinary in the ordinary : being with older people who bodies and minds are fragmen-ng
Living and dying in care homes • Median life expectancy of an
older person admiNed to a care home that offers personal care 2-‐3 years and 1-‐2 years in care home with nursing
• 30% of care home popula&on have advanced demen&a (70% symptoms consistent with demen&a)
• Dying with demen&a is an uncertain paNern and difficult to predict
• Care homes rely on primary care for end-‐of-‐life (eol) support and access to specialist services who come in when they know someone is dying
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EVIDEM eol: 2 phased mixed method Study
Phase 1 : To understand the need for support and eol care of older people with demen-a living in care homes – Tracked care of 133 people with demen&a in 6 care homes over 18 months
– Found that even with access to eol tools and specialist support care home and primary care staff:
Expressed uncertainty when providing eol care : (uncertanity =less trust, more conflict)
Had few opportuni&es for collabora&ve working
Phase 2 : To pilot a co-‐design approach ( Apprecia-ve Inquiry) to support eol care of older people with demen-a living in care homes
Star&ng where people are: taking AI into the care homes
6 months
• Stories of excellence around joint working in EOL care for residents with dementia; • Being together and valuing each others roles • Shared goals of future EOl care for residents with dementia
Meeting 1 Appreciation/Stories
• Generous Listening & development of interventions from post -‐death case reviews • Seeing the world from another's point of view • Working out next steps around speciHic interventions
Meeting 2 Positive Development of
Practice • Sustaining and expanding circles of dialogue • What small things can we do to spread the changes? • Who else needs to be involved? • Stories of the process from different perpectives
Meeting 3 Sustaining Change
3 care homes Each mee-ng one hour 3 hours in total in each home
Par-cipants: Care staff, visi-ng physician and nurse
Process enabled par&cipants to develop tools to support Eol care:
A script for discussing EOL wishes with rela-ves.. “Some people have very definite views about how they want to be
carried for at end of life and others do not want to think about it. We understand everyone is an individual.”
A tool to support discussions with out of hours services.. In thinking about the resident… • What are the capaci@es of the resident before this event? • What are they usually like? • How has the problem altered/what they are normally like?”
A GP led implementa-on and audit of advance care planning (DNACPR)
EVALUATION -‐ What changed?
Compared with Phase One evidence: • Decrease in unplanned hospitalisa&ons (45% reduc&on in hospital costs) • Increased engagement of care home staff with residents and family about Eol issues (16% increase in Care home staff involvement) • GPs, care staff, rela&ves and residents now mee&ng together • Increase in Advanced Care Plans and DNACPR Forms • Cost neutral for primary care involvement across the 3 care homes
Increased Share goals/vision “singing off the same song sheet” (DN) Increased Reassurance/support “I found them [care staff] reassuring presence. Increased Trust/mutual respect “I know that the doctor was dealing with it
and he will back me up”
thema&c analysis of interviews with par&cipants, aier death analysis collected data on hospital associated use
Working Together “The communica@on with XX is no longer doctor-‐carer, ‘you do
this, I’ll do that’, but it’s more I think there’s an improved confidence with the staff to be able to say, ‘doctor, we’re concerned that this pa@ent is deteriora@ng, what do you think we should do? ..........the staff spoke to the pa@ent, the family got the impression that ‘this is just one body talking to me, rather than a carer and a doctor’ – basically just resona@ng that we think the same. Which is good, because you’ve got somebody who’s not medically trained, giving reassurance and the doctor’s also offering advice,
.......so that’s what I’m sort of saying about working with the staff. The communica6on, the confidence about
approaching people’s lives, to me, has improved” (GP)
“Yeah I think so. It was really helpful, wasn’t it, mee&ng the District Nurse and GP, and making us work more as a team. It helped us know what we’re en6tled to in regards to help, and they realised where they can help us. We can be quite independent as the care-‐provider, knowing there’s that extra support, and since having those mee&ngs, we’re totally different to before. Staff felt a liPle bit more in control I think, and they’re not so panicked. It was much beNer”
(Exit interview with Manager and Deputy Manager)
Working together: NHS and Care Staff
• Care staff and GP, DNs and care staff working together planning EOL with rela&ves and residents
• Care staff asked DNs for support when someone was dying in care home “x was in her own bed and peacefully slipped away while the District Nurse was in aSendance”
• Care staff asked DNs for advice and were told not to turn resident (something they would not have known)
• Staff were reassured to have DN’s medical advice before phoning the family “this was fantas@c because we felt the burden was completely taken off us, I didn’t have to make that decision, of shall I call the family”
Conclusions
• Apprecia&ve inquiry enabled staff to acknowledge the posi-ve work carried out by residen&al care homes to manage PWD at EOL with no clinician on-‐site (avoids a deficit model of care especially in demen&a research)
• A modified Ai ’ is achievable and could be incorporated into the working paNerns of par&cipants
• AI supported a shiO in care home culture and established paPerns of working with primary care services that could mi6gate uncertain-es inherent to end-‐of-‐life care of older people with demen-a
Challenges
• Phase 2 involved three care homes • Fluctua&ng aNendance at mee&ngs • Tension between immediate system concerns of the staff and the needs of the research to be seen to be making a difference to pa&ent care
• Resident and rela&ve voice limited • Connec&ng between mee&ngs
Reflec&ons Suppor-ng and mi-ga-ng the inherent uncertainty in providing Eol care for residents in care homes through:
• Crea-ng a shared language • Allowing both Knowing AND not knowing
• Intelligent Kindness
Reflec&ons : Intelligent Kindness • Kin ness, Our common des-ny Connectednes • A Virtuous Circle • A gentler and more though\ul engagement with the experience of those we care with and care for
• The possibility of crea-ng connec-ons
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“The difference between ordinary and extraordinary is a ques6on of recogni6on
Many thanks to care staff, NHS staff who gave up their -me to take part in this research
Anne Radford giOed AI coach!
This presenta@on presents independent research commissioned by the Na@onal Ins@tute for Health Research (NIHR)
under its Programme Grants for Applied Research scheme (RP-‐PG-‐0606-‐1005). The views expressed in this publica@on are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of
Health.’
EVIDEM: EVIDENCE-BASED INTERVENTIONS IN DEMENTIA Changing practice in dementia care in the community: developing and testing interventions
from early recognition to end of life, 2007-2012 National Institute for Health Research: Programme Grant for Applied Research (RP-PG-0606-1005)
Hosted by Central & North West NHS Foundation Trust
Caroline.nicholson@kcl.ac.uk
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