Tiempo extraordinario

promoted  the  suggestion  of  personal  responsibility,  positioning  EOLC  as  

something  for  individuals  without  a  terminal  diagnosis  to  consider,  discuss  and   plan.  

At  a  time  when  dying  trajectories  have  become  more  complex,  lengthy  and  less   predictable  discussions  around  what  constitutes  a  good  death,  or  dying  well,   have  been  shown  currently  to  be  based  around  ideas  of  choice  and  control.    

Thus,  the  government’s  policy  directives  have  been  to  encourage  and  promote   the  idea  that  a  terminally  ill  patient  should  become  involved  as  an  active   participant  within  their  own  EOLC.    

   3.4.1 Planning and control  

The  current  approach  to  death  and  dying  has  been  outlined  as  a  process   involving  diagnosis,  prognosis  and  medical  interventions,  but  also  expands  to   include  some  concern  for  other  matters  such  as  writing  a  will.  The  idea  that   dying  can  be  planned,  recorded  and  documented  and  that  those  who  are   terminally  ill  should  record  their  choices  and  set  out  plans  is  an  initiative   known  as  ‘Person  Centred  Planning’  (Sinclair,  2007,  p.  165).  Known  as  

anticipatory  care  planning  as  well  as  advanced  care  planning  (ACP)  the  most   recent  publication  in  this  area,  the  ‘Review  of  Choice  in  End  of  Life’  (July  2016),   published  by  the  Department  of  Health,  enshrined  within  government  policy  

the  idea  of  formalising  and  documenting  choice  but  is  considered  as  actually   more  about  instigated  control  (Walter,  2017).  

Looking  at  this  initiative  to  record  and  plan  an  individual’s  EOLC  once  a   terminal  diagnosis  has  been  made,  consultants  in  palliative  care  medicine,   Mullick  et  al.  (2013),  saw  the  process  of  formal  decisions,  often  recorded   electronically,  as  part  of  a  process  to  coordinate  systems  involving  different   EOLC  providers.  Furthermore,  Mullick  et  al.  argued  it  was  more  than  an   initiative  by  central  government,  and  the  idea  of  planning  EOLC,  proposed  to   improve  communication  between  different  health  professionals  in  a  range  of   EOLC  settings  and  achieve  the  choices  and  wishes  of  those  at  the  end  of  their   lives,  would  now  become  a  way  to  measure  how  effectively  providers  had   fulfilled  a  patient’s  preferences.    

The  aim  of  ACP  is  to  facilitate  a  good  death  through  planning,  identifying  and   organising  care  available  from  a  range  of  different  stakeholders,  for  example   patients,  families  and  healthcare  professionals,  as  well  as  providing  data  to   funders  or  commissioners  of  care  (Russell,  2014  p.  997).  ACP  is  a  collection  of   forms  which,  once  completed  and  registered,  are  a  device  in  EOLC  which  can   direct  resources  and  ensure  public  funds  are  allocated  to  EOLC  providers  who   feature  most  strongly  in  care  plans  (Russell,  2015).  From  a  hospice  perspective,   Russell  (2014)  saw  ACP  as  a  term  to  encapsulate  anticipatory  end-­‐of-­‐life  

conversations,  documentation  of  wishes  and  care,  and  the  right  to  refuse  in   advance  treatments  for  self  or  others,  and  even  if  the  forms  and  electronic  

documentation  are  not  completed  a  conversation  about  ACP  is  seen  by   hospices  as  a  ‘therapeutic  intervention’  (Russell,  et  al.,  2017).  Whilst  hospices   may  regard  ACP  as  beneficial  to  patients  the  role  of  ACP  may  be  more  to   measure  and  evaluate  after  an  individual’s  death.    

ACP  raises  tensions  in  EOLC  because  exercising  choices  and  making  decisions   are  not  always  considered  to  be  helpful  to  patients,  as  they  burden  a  terminally   ill  person  with  additional  responsibilities  at  the  end  of  their  life  (Mol,  2008;  

Pollock,  2015).  Having  to  ‘die  well’  requires  patients  to  continue  to  be  active   and  autonomous,  perhaps  in  the  same  way  in  which  at  other  times  in  their  lives   patients  have  been  required  to  be  active,  to  make  choices  and  to  behave  as  a  ‘a   good  citizen’  or  ‘an  active  consumer’  (Holloway,  2007).  Walter  (1994)  writes   about  what  he  described  as  ‘a  current  trend  to  define  one’s  own  dying’  (p.  29),   which  he  continued  into  a  discussion  about  the  personalisation  of  death  in   many  associated  areas  such  as  coffin  designs  and  funeral  services.  In  her  book  

‘Dying  well  a  guide  to  enabling  a  good  death’,  Neuberger  (2004)  argued  that  to   achieve  a  good  death  was  to  require  an  individual  at  the  end  of  life  to  actively   embrace  this  ‘last  human  endeavour  over  which  we  can  control’  (p.  145),   suggesting  that  being  able  to  die  well  required  an  element  of  control  to  be   exercised  by  the  individual.  To  fulfil  this  role  Neuberger  suggests  an  individual   would  be  conforming  to  what  they  believed  was  an  acceptable  death  or  dying   process,  performing  the  role  in  their  own  story  of  a  ‘good  patient’,  articulating   their  own  wishes  to  doctors  and  family  members  whilst  ‘dying  decently,  tidily,   not  disintegrating  as  persons,  not  being  a  mess’  (Neuberger,  2004,  p.  126).  

What  emerges  from  this  discussion  is  the  relationally  involved  in  the  reality  of   death  and  dying,  in  other  words  that  for  a  terminally  ill  person  how  they  want   to  die  is  not  just  about  the  individual’s  wishes  but  what  that  person  believes  is   most  customary  and  acceptable  to  those  around  them,  adding  more  aspects  to   the  planning  by  an  individual  at  the  ends  of  their  lives.  

3.4.2 A place of good intentions  

A  hospice  has  been  referred  to  as  a  successful  setting  for  this  type  of  ‘hope   work’  by  Walter  (1994),  who  went  on  to  consider  that  hospices  themselves  had   a  role  to  play  in  the  control  and  management  of  dying.  Writing  about  what   kind  of  death  was  acceptable  in  a  hospice  setting,  Walter  described  observing  a  

’hospice  smile’  (p.  135)  seeing  this  fixed  expression  of  hope  amongst  both  

patients  and  staff  at  the  hospice.  Walter  described  an  ongoing  performance  in  a   hospice  which,  for  a  patient,  is  a  duty  to  perform  as  the  good  hospice  patient   and  play  a  very  specific  role.  Carrying  out  his  research  into  hospices  by   questioning  staff  and  patients  in  the  early  1990s,  Walter  interrogated  the   peacefulness  of  the  hospice  surroundings  asking  in  one  hospice  he  visited  why   an  anger  room  was  not  included  as  he  felt  that  those  who  were  terminally  ill   would  need  a  place  to  scream  and  shout  about  the  injustice  of  their  terminal   diagnosis.  He  concluded  that  this  room  had  not  been  included  within  hospices   to  ensure  the  careful  constructed  peaceful  atmosphere  continued  

uninterrupted  by  these  disruptive  behaviours  and  consequently  ensured  that   hospices  are  seen  and  continue  to  be  seen  as  places  of  serenity.