Examining  quality  of  end-­‐of-­‐life  care  from  the  perspec8ve  of  bereaved  rela8ves:    Development  and  valida8on  of  a  postal  ques8onnaire  framed  by  na8onal  standards.  

Kathleen  McLoughlin1,  Mary  Lovegrove2,  Kieran  McKeown2  and  Andy  Cochrane1  1.  Department  of  Psychology,  Maynooth  University,  Maynooth,  Co.  Kildare  

2.  The  Irish  Hospice  FoundaFon,  Nassau  Street,  Dublin  2.  

Background:    High  quality  end-­‐of-­‐life  care  can  make  a  significant  difference  to  the  physical,  psychological  and  spiritual  outcomes  for  the  bereaved,  conversely,  when  care  is  poor,  it  can  have  a  detrimental  impact.  The  Office  of  the  Ombudsman  in  Ireland  recently  published  a  themaCc   collecCon   of   complaints   received   regarding   end   of   life   care   focusing   on   the   need   for   improvement   with   regard   to  communicaCon,   paCent   autonomy,   access   to   specialist   palliaCve   care,   support   for   families   and   friends,   post-­‐mortem   examinaCons,  returning   the   deceased   person’s   belongings   and  management   of   complaints.     These   elements   are   all   central   features   of   the  Quality  Standards   for  End  of   Life  Care   in  Hospitals  and  NaConal  Standards  mandated  by   the  Health   InformaCon  and  Quality  Authority  within  their  focus  on  improving  the  quality  of  care  for  people  generally  and  at  end  of  life.      In   Ireland,  there   is  no  agreed,  validated  tool   to  examine  the  quality  of  end-­‐of-­‐life  care  against  published  standards.    The  complexiCes  associated  with  evaluaCng  the  quality  of  care  from  a  dying  paCent’s  perspecCve  have  been  well  documented  internaConally  and  hearing  the  voice  of  bereaved  relaCves  is  considered  a  reasonable  proxy  and  an  important  component  of  a  quality  and  risk  approach.    In  2011/2  The  Hospice  Friendly  Hospitals  (HFH)  programme  and  the  HSE  PalliaCve  Care  Clinical  Programme  developed  a  pilot  NaConal  End  of  Life  Care   Audit   and   Review   System,   that   included   a   survey   of   bereaved   relaCves   intended   for   use   as   a   normal   part   of   the   quality  improvement  process  in  all  care  seVngs  where  people  die  in  Ireland.    Aim:    To  describe  the  process  used  to  develop  and  validate  a  survey  of  bereaved  relaCves  to  assess  the  quality  of  end  of  life  care  in  all  seVngs  where  people  die.  

Design:  The  tool  was  developed  in  four  disCnct  phases  (Figure  1).  SeBng:   The   pilot   was   conducted   in   acute   hospitals   (n=4)   and  residenCal  care  services  for  older  people  (n=10).      

 Results:   CogniCve   tesCng   revealed   that   the   quesConnaire   was  considered   to   be   an   appropriate   length,   taking   on   average   20  minutes  to  complete.    All  parCcipants  were  able  to  complete  the  quesConnaire  and  did  not  find   it  burdensome  or   too  distressing.    ParCcipants  welcomed  the  survey  and   two  recommended   that   it  should   become   a   rouCne   part   of   service   delivery   following   the  death  of  a  person  in  a  healthcare  seVng.      Audit   mangers   reported   that   the   process   of   extracCng   the  bereaved   relaCves   contact   details,   checking   whether   they   could  be   contacted   with   both   the   clinical   team   and   local   complaints  management   personnel,   making   the   call   and   sending   out  documentaCon   was   a   very   Cme   consuming   process,   taking  approximately   45-­‐60  minutes   per   parCcipant.     Phone   calls  were  someCmes   difficult,   with   people   taking   the   opportunity   to   “tell  their   story”   over   the   telephone   and   in   a   small   number  of   cases,  people   refused   to   engage   in   the   study   but   gave   their   feedback  over   the   telephone.     It   was   suggested   that   clear,   robust  procedures   are   required   to   process   and   manage   the   feedback  given  over  the  phone  by  bereaved  relaCves  who  do  not  choose  to  engage  with  the  survey.      Of  the  120  bereaved  relaCves  who  were   invited  to  parCcipate   in  the  pilot   run,  59   (49.2%)   responded.     36   (61.0%)  were   recruited  via   an   acute   hospital   and   23   (39.0%)   from   a   residenCal   care  service   for   older   people.     There   was   generally   weak   levels   of  agreement   between   staff   and   relaCves   on   most   items   of   the  survey  with  weak  –  no  agreement  on  most  items  except  the  single  room.      

Conclusions:    The   tool   is   the   first   instrument   to   specifically   assess   the   quality   of   end   of   life   care   against   naConal   standards   in   Ireland   and   has  demonstrated   both   acceptability   and   feasibility,   with   good   face   and   content   validity,   clarified   by   the   logical,   pragmaCc   approach   to  tesCng  adopted  in  this  study.  QualitaCve  findings  were  of  greatest  interest  to  staff  and  had  most  potenCal  to  drive  quality  improvement  locally.   The   significant   disagreement   in   findings   between   staff   and   bereaved   relaCves   is   interesCng   and   highlights   the   different  perspecCves  of   relaCves  and  staff  which   themselves   reflect  different  subjecCve  understandings  and  experiences  of   the  person  who   is  also  a  paCent  and  the  quality  of  care  delivered.  Whilst  evidence  suggests  that  proxies  can  reliably  report  on  the  quality  of  services,  and  on   observable   symptoms.   Agreement   is   usually   poorest   for   subjecCve   aspects   of   the   paCent's   experience,   such   as   pain,   anxiety   and  depression,  as  was  the  case  in  this  study.  These  differences  are  natural  and  inevitable  which  is  why  they  are  reflected  in  our  objecCve  measurements  of  quality.  For  that  reason,  these  differences  are  useful  in  the  assessment  of  quality  but  not  necessarily  useful  in  assessing  validity  and  reliability  of  the  tools  in  quesCon.  Further  studies  are  

Phase 3: Wider Audience Review

Aim: To provide support for face and content validity

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Phase 4: Pilot with bereaved relatives, Cognitive interviews, comparison survey results with staff review tool and audit manager feedback Aim: To provide support for face and content validity and to examine reliability and feasibility

Questionnaire circulated to the Specialist Palliative Care Clinical Programme (n=19). Feedback was invited and collated. Amendments made as necessary

Questionnaire distributed using an agreed procedure (n= 120). Response rate of 49.2% (59/120). Cognitive testing (n=2) and cognitive interviews (n=3) conducted. Findings from bereaved relatives survey compared with findings from staff review tool (n=53). Findings from audit managers (n=10) regarding the process of recruitment obtained from focus groups (n=2).

Phase 1: Question Formulation

Aim: To generate potential questions representing quality of end of life care for the person and family

Phase 2: Expert Advisory Committee Review

Aim: To achieve consensus regarding which questions and domains to include for the draft survey

Final Advisory Committee Meeting

Aim: Final review before wider use and approval of alterations based on pilot findings

Survey of Bereaved Relatives

Questions based on quality of care domains in literature, outcome of the National End of Life Audit 2008/9 and key areas in published standards

An expert advisory group of 23 members reviewed potential questions via email and a meeting was called to achieve consensus regarding content, and wording of questions.

Draft Questionnaire Developed

Expert advisory committee meeting to agree final version of questionnaire for inclusion in the National End of Life Audit and Review System after incorporation of changes from the pilot with opportunity for review and comment.