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    

2  

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    

5  

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  

   

     

16  

“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