Oferta y Demanda

report  can  be  considered  to  have  encapsulated  Saunders’  aspirations  for   palliative  care  to  achieve  influence  in  the  care  of  those  at  the  end  of  their  lives   within  mainstream  health  and  social  care,  however,  with  some  important   consequences  for  hospices  which  are  examined  though  a  consideration  of  the   principles  and  guidelines  which  were  embedded  in  this  key  policy  document.  

   3.1.2 Introducing commissioning, monitoring and measurement  

In  bringing  together  organisations  involved  in  EOLC,  whilst  at  the  same  time   taking  steps  to  facilitate  wider  discussion  on  EOLC,  the  government  was   beginning  to  impose  some  structure  onto  this  area  of  health  and  social  care,   specifically  in  the  suggestions  for  the  ‘categorising’  of  EOLC  also  announced  in   the  2008  report.  Introducing  a  ‘Measurement  Framework  for  End  of  Life  Care’  

(Department  of  Health,  2008,  p.  137)  with  the  objectives  of  monitoring,   recording  and  measuring  EOLC,  a  tool  was  developed  by  the  government   which  would  demonstrate  the  progress  of  their  strategy  by  gathering  EOLC   data  to  measure  process,  outcome  and  quality  of  care  by  different  providers.  In   addition,  a  national  quality  standard  was  proposed  to  inspect,  rate  and  report   on  health  and  social  care  provided  in  England  which  was  to  be  administered  by   the  Care  Quality  Commission  (CQC)  (p.  133-­‐147),  also  the  body  for  planning,   commissioning  and  awarding  public  funds  in  healthcare.  What  this  framework   of  measurement  meant  for  EOLC  providers,  including  hospices,  was  that  all   EOLC  providers,  hospitals,  residential  care  homes  and  other  private  EOLC  

providers  who  comprised  the  network  of  health  and  social  care  provision  in   England,  now  fell  within  this  inspection  regime.    

Introducing  such  processes,  recognised  and  established  within  central   government  to  account  for  many  different  areas  of  public  spending,  brought   EOLC  in  line  with  areas  such  as  education  where  regular  inspections  occur,  as   well  as  routine  publication  of  data  collected  on  the  provision  of  a  service,  and  a   ruling  of,  ‘good’  or  ‘poor’  is  given  as  a  judgement  of  the  worth  and  effectiveness   of  a  service  provider.  Importantly  this  attempt  to  bring  EOLC  in  line  with  other   publicly  funded  areas  of  health  and  social  care  is  also  discussed  as  a  form  of   standardisation  of  EOLC  (Borgstrom,  2016).  

The  effects  of  such  measures  were  significant  for  EOLC  providers  such  as   hospices,  NHS  hospitals,  residential  care  homes  and  other  private  EOLC   providers  who  had  not  been  previously  categorised  or  compared  to  each  other   in  this  way.  Current  and  future  EOLC  providers  in  England  had  to  accept   inspection  and  that  a  quality  criterion  for  EOLC  was  being  established.  In   introducing  these  processes  it  was  clear  that  some  attempts  had  begun  to  give   a  uniformity  in  EOLC.  Consequently,  a  legacy  of  the  Department  of  Health   2008  report  and  subsequent  accounts  of  its  progress  was  in  setting  up  the   systematic  information  gathering,  processes  and  classifications  to  judge  and   categorise  the  relevant  actors  in  EOLC.  Importantly,  what  was  introduced  was   the  suggestion  that  the  EOLC  currently  provided  for  terminally  ill  people  in   England  was  not  good  enough,  but  with  state  intervention  better  EOLC,  from  a  

variety  of  providers,  was  going  to  be  offered  to  the  terminally  ill  in  the  future.  

This  key  policy  document  has  thus  had  a  significant  impact  on  how  the   complex  process  of  managing  EOLC  has  been  translated  into  standardised,   systematic  means  of  monitoring  and  measuring  quality  and  efficiency.  

Through  funding  and  quality  measures,  unifying  and  standardising  of  EOLC   provision  was  taking  place,  with  hospices  being  inspected  in  the  same  way  as   all  other  EOLC  providers.  Assessing  the  transformations  and  reformations  for   EOLC  and  for  hospices,  Seymour  and  Cassel  (2016)  discussed  the  public  health   system  and  approach  to  EOLC  in  England  as  being  outlined  through  various   statements  of  intent  or  strategies,  and  being  maintained  via  monitoring   initiatives.  Sturgeon  (2014)  saw  that  the  policy  was  the  instrument  which  now   brought  together  privately  funded  organisations  and  charities  who  could  bid   for  and  provide  this  EOLC  together  with  publicly  funded  organisations  such  as   NHS  hospitals  (ibid).  

The  consequences  of  these  initiatives  for  the  terminally  ill,  with  this  diverse   range  of  providers  competing  against  each  other  for  public  funding  to  provide   health  and  social  care,  has  been  described  recently  by  O’Mahony  (2016a)  as  ‘the   jostling  and  manhandling  of  death’  in  the  current  battles  over  ownership  of   death  and  the  dying  process.  Considering  what  this  means  for  individuals  who   are  terminally  ill  as  well  as  health  and  social  care  professionals,  O’Mahony   suggested  the  current  situation  was  a  distraction  from  the  ‘real  issues’  involved   for  and  with  the  care  of  the  dying.  Furthermore,  from  his  position  as  

consultant,  O’Mahony  queried  the  current  approach  to  dying  within  NHS   hospitals  and  with  EOLC  given  by  hospital  doctors.  O’Mahony’s  (2016a,  2016b)   writing  raises  questions  about  the  cause  and  nature  of  underlying  tensions   between  different  providers  and  their  approaches  to  EOLC,  suggesting  that   policy,  guidelines  and  measures  and  current  discussions  are  having  a  

consequence  in  the  care  which  is  delivered  to  people  at  the  end  of  their  lives.  

Borgstrom  (2016)  described  this  as  the  underlying  assumption  in  EOLC  policy   that  death  can  be  both  foreseen  and  managed  (p.  5),  a  similar  view  has  caused   O’Mahony  (2016b)  to  reflect  that  through  attempts  to  measure  EOLC  some  of   the  humanity  in  care  for  those  at  the  end  of  their  lives  may  have  been  lost.  The   idea  that  death  may  be  controlled  and  refined  and  what  this  has  meant  for   different  care  providers  is  discussed  in  the  final  part  of  this  section  on  EOLC.  

3.1.3 ‘Taming death’

Approaches  to  death  and  dying  are  connected  to  societal  attitudes  in  

contemporary  society  and  together  these  influence  the  care  of  the  dying  (Hart   et  al.,  1998;  Mullick  et  al.,  2013).  With  most  deaths  in  England  now  occurring  in   hospitals  the  current  approach  to  EOLC  may  be  comprised  of  a  more  medical   approach  with  EOLC  given  in  hospitals  often  deemed  to  be  at  odds  with  a  more   holistic,  sociological  approach  in  which  the  entire  human  experience  at  the  end   of  life  can  be  considered  (Thompson  et  al.,  2016).  Aries  (1974)  considered  the   development  of  a  secular  approach  to  death  and  care  of  the  dying  in  an  

important  social  history  of  western  attitudes  toward  death  and  dying.  Using  a  

chronological  account  to  chart  the  change  in  attitudes,  he  outlined  the  ‘taming’  

of  death  and  dying  from  medieval  times  and  suggested  that  through  rituals  and   religion  actions  were  undertaken  to  control  the  unknown  and  frightening   aspects  which  faced  individuals  and  those  around  them  at  the  end  of  life.    

Through  the  ‘triumph  of  medicalisation’  (Aries,  1974,  p.  584),  Aries  argued  that   death  had  become  both  ‘tamed’  and  less  visible  through  medical  advances.  He   suggested  doctors  controlled  the  dying  process  and,  at  times,  extended  the   dying  stages,  something  which  Aries  saw  as  undesirable  and  described  as  a   tendency  of  doctors  to  keep  a  patient  alive  at  all  costs  (p.  585).  Writing  at  a   time  of  rapid  medical  advancement  in  areas  such  as  the  treatment  of  cancer,   and  when  modern  hospices  were  emerging  to  offer  cancer  sufferers  a  more   holistic  approach  in  the  treatment  of  their  illness,  Aries  contrasted  hospices  to   hospitals,  describing  hospices  as  a  ‘new  concept’  specialising  in  painless  dying   and  developing  a  different,  and  to  Aries  more  acceptable,  attitude  and  

approach  to  death  and  dying  to  that  of  hospitals.  Interestingly  cancer  may  well   have  been  ‘tamed’  as  it  is  now  considered  to  be  a  highly  treatable  condition,   and  whilst  some  forms  of  cancer  are  still  terminal  these  commonly  have  a   predictable  downward  trajectory  with  clearly  staged  and  planned  interventions,   a  treatment  process  which  is  not  common  or  possible  with  most  other  terminal   conditions  (Clark,  2016).    

Considered  by  O’Mahony  (2016b)  to  be  a  romantic  who  had  a  somewhat   idealised  view  of  pre-­‐industrial  society,  Aries’  work  is  however  helpful  in  its  

contribution  to  addressing  how  death  and  dying  may  have  changed  and  how   EOLC  providers  have  developed  their  own  approaches  to  the  care  of  the  

terminally  ill.  Writing  about  the  different  approaches  to  EOLC  Gallagher  (2014)   questioned  whether  there  should,  or  indeed  could,  be  integration  or  

collaboration  between  EOLC  providers  such  as  hospices  and  hospitals,  

considering  hospitals  as  healthcare  settings  where  the  dominant  attitude  and   practice  of  a  profession  is  based  on  practices  of  prolonging  life  (p.  286).  What  is   emerging  is  that  EOLC  providers  can  be  seen  as  distinguished  by  and  from   each  other  through  the  form  of  care  that  is  provided  and  that  a  ‘tame  death’  

may  suggest  that  the  alternative  is  wild  and  somehow  less  desirable.  Here  what   is  surfacing  is  that  different,  and  changing,  societal  attitudes  and  approaches  to   death  and  dying  are  fundamental  to  understanding  how  hospices  have  

developed  as  organisations  formed  around  a  very  specific  practice  of  EOLC.  

The  care  which  hospices  provide  is  explained  in  more  detail  next.  

3.2 Palliative care  

Palliative  care  is  considered  to  acknowledge  the  complete  emotional,  spiritual   and  physical  aspects  of  an  individual’s  suffering  and  offers  an  individualised   process  of  care  which  accepts  that  a  condition  is  no  longer  curable  and  that  a   person  is  at  the  end  of  their  life  (NCPC,  2017).  Etymologically,  the  word   palliative  is  derived  from  the  Latin  verb  ‘palliare’,  which  means  ‘to  cloak’,  a  

‘pallium’  being  a  cloak  or  vestment  worn  by  a  priest  (Dormandy,  2006;  Sinclair,   2007).  Documenting  the  treatment  of  pain  over  several  centuries,  Dormandy   (2006)  derived  meaning  from  the  Latin  origins  of  the  word  suggesting  that  the   practice  of  palliative  care  involved  the  wrapping  or  cloaking  of  a  terminally  ill   individual  at  the  end  of  their  life.  Studying  the  emergence  of  palliative  care  and   understanding  the  connection  of  this  form  of  care  to  hospices  was  important  in   this  research  project  because  it  highlighted  the  different  positions  hospices   have  taken  in  comparison  to  other  providers  of  EOLC.  In  addition,  by  

‘championing’  this  form  of  EOLC,  hospices  seem  to  have  been  afforded  a  status   and  authority  in  EOLC  care  despite  the  amount  of  EOLC  they  provide  in  the   UK  being  under  represented  in  official  figures  (Conway,  2011;  Field  and   Addington-­‐Hall,  1993).  

Palliative  care  emerged  in  the  1950s  and  1960s  from  research  undertaken   examining  the  treatment  of  patients  suffering  from  cancer  in  hospitals.  Before   palliative  care  the  recognised  practice  and  common  treatment  for  the  acute   pain  experienced  by  many  cancer  patients  was  to  dispense  pain  relief  on