Gazebo  in  the  frost  on  the  grounds.  (Photo  courtesy  of  Rachel  Bilton-­‐Simek  2014)  

Calvary   Healthcare   ACT   is   a   part   of   the   ACT   public   healthcare   system   and   includes   the  provision  of  specialist  palliative  care  services  to  ACT  and  surrounds.      Our  specialist  palliative  care  service  is  based  at  Clare  Holland  House  and  aims  to  improve  quality  of  life  in  a  variety  of  settings.    These  consist  of  the:  

1. Palliative   Care   consultative   services   to   Canberra   Hospital   and   Calvary   hospital,  including  a  Palliative  care  nurse  at  Calvary  hospital.  

2. Palliative  Care    Medical  Specialist  consultants  for  the  private  hospitals,    3. The   Calvary   Centre   for   Palliative   Care   Research   aims   to   develop   palliative   care  

practice,  improve  service  delivery  and  improve  patient  and  carer  outcomes.  It  is  co-­‐funded   by   Australian   Catholic   University   and   Calvary   Health   Care   ACT.   The   Centre  has   three   streams   of   work:   Clinical   Care,   Care   Pathways,   and   Care   Relationships.  Current   projects   include:   developing   an   evidence   base   around   empathy   in   family  meetings,   examining   preventable   ED   presentations   and   integrating   specialist  palliative  care  into  residential  care  for  older  people.    

4. Community  Specialist  Palliative  Care  Services  including:  • Palliative  care  liaison  for  all  Residential  Aged  Care  Facilities  across  Canberra,  (90  

clients  of  RACFs  receiving  support  via  the  liaison  team)    • Outpatient  clinics  at  Clare  Holland  House   (currently  128  patients   receiving  care  

via  clinics)  • MND  outpatient  clinic  at  a  community  health  centre  monthly,    

o 3-­‐4  clients  per  clinic  • Home   Based   Palliative   Care     team   for   patients  who   need   to   be   seen   at   home  

(currently  caring  for  135  clients  in  their  homes)    5. And  a  19  bed  inpatient  unit.  The  inpatient  unit  and  outpatient  clinics  accept  referrals  

from  surrounding  NSW  regions  as  well  as  the  ACT.  

The  palliative  care  specialists  are  available  24  hours  a  day  seven  days  a  week  to  provide  advice  and  support  to  medical  practitioners  within  ACT  and  surrounding  region.    

 

Atrium  garden  at  Clare  Holland  House.  (Photo  courtesy  of  Rachel  Bilton-­‐Simek  2014)  

Clare  Holland  House  Inpatient  Unit  (Hospice)    

The  inpatient  unit  accepts  from  surrounding  NSW  as  well  as  the  ACT.  Medical  Care  is  provided  within  the  unit  by  a  palliative  care  specialist  and  medical  registrar,  on  rotation  from  The  Canberra  Hospital.  Medical  staff  is  rostered  between  8.30am  and  5.30pm  and  is  on  call  after  hours.  Weekend  cover  is  provided  by  accredited  general  practitioners  with  support  from  the  specialist  on  call.    

The  specialist  palliative  care  nursing  team  working  in  the  inpatient  unit  consists  of  a  combination  of  Registered  Nurses,  Enrolled  nurses,  Endorsed  Enrolled  Nurses  and  Assistants  in  Nursing.  Our  nursing  team  consists  of  approximately  25  nurses,  with  a  broad  range  of  skills  and  experiences.  They  support  and  preceptor  EEN  students  from  the  Canberra  Institute  of  Technology  and  Registered  nursing  students  from  Charles  Sturt,  University  of  Canberra  and  the  Australian  Catholic  University    

The  inpatient  team  is  supported  by  the  multidisciplinary  team  made  up  of  a  pastoral  care  team,  Physiotherapist,  Occupational  therapist,  and  a  social  worker.  Other  multidisciplinary  support  can  be  utilized  from  the  Calvary  Hospital  campus.  

The  team  is  also  supported  by  approx.  52  trained  volunteers  from  Palliative  Care  ACT,  who  rotate  through  the  inpatient  unit.  They  companion  and  support  clients  and  families,  and  provide  simple  cares  such  as  preparing  drinks,  assisting  with  meals,  laundry  and  other  supportive  tasks.  

 

 

 

Community  Specialist  Palliative  Care:  

To  be  assessed  for  admission  to  the  community  specialist  palliative  care  service,  a  referral  written  by  a  health  professional  is  required.  Health  professionals  may  include  GPs,  community  nurses  or  a  treating  medical  or  nursing  team  in  a  hospital.    

The  Home  Based  Palliative  Care  team  provides  palliative  care  services  to  patients  and  families  in  their  homes  in  the  ACT.  The  home  based  palliative  care  team  is  made  up  of  a  specialist  palliative  care  doctor,  specialist  palliative  care  registered  nurses  and  members  of  the  multidisciplinary  team;  including  an  occupational  therapist,  (dividing  time  between  community  and  inpatient  services),  a  Physiotherapist  (dividing  time  between  community  and  inpatient  services),  a  social  worker  and  the  pastoral  care  team.  Our  overnight  service  is  supported  by  the  senior  night  nursing  staff  and  nurses  from  The  Canberra  Hospital  “LINK”  team.  

The  aim  of  the  Home  Based  Palliative  Care  team  is  to  promote  the  comfort  and  wellbeing  of  people  with  terminal  illness.  This  not  only  includes  physical  comfort  (managing  pain  and  other  distressing  symptoms)  but  also  the  emotional,  spiritual  and  psychological  wellbeing  of  patients  and  their  families.  Our  focus  is  on  improving  the  quality  of  life  of  both  the  patient  and  their  family.    

We  achieve  this  aim  by:  

• Advising  and  supporting  the  primary  care  team  (e.g.,  general  practitioners,  community  nurses)  in  the  provision  of  palliative  care.  

• Managing  distressing  symptoms.  • Teaching  the  family  how  to  care  for  the  patient.  • Providing  equipment  to  support  the  patient  to  stay  in  the  home  

setting  as  long  as  possible.  • Providing  24  hour  telephone  advice    (and  home  visits  if  necessary)  • Providing  support  to  the  bereaved.    

Patients  with  home  based  palliative  care  are  visited  according  to  need.  Some  are  visited  daily  while  others  are  visited  weekly  or  fortnightly.  Some,  with  minimal  care  needs,  are  only  contacted  by  phone  while  others,  if  stable,  are  discharged.    

Home  based  palliative  care  does  not  routinely  provide  assistance  with  personal  care  needs  (such  as  showering)  but  can  refer  to  other  organizations  if  this  is  necessary.  Other  care  needs,  (such  as  dressings,  routine  injections)  are  managed  by  the  community  nursing  service  

Inpatient  room  (photo  courtesy  of  Rachel  Bilton-­‐Simek  2013)  

 

with  whom  we  work  closely.  Home  based  palliative  care  is  able  to  refer  patients  and  families  to  the  Palliative  Care  ACT  Volunteers  Service  if  this  is  requested.  (We  have  approx.  40  trained  volunteers  who  provide  this  support)  

The  Palliative  Aged  Care  Service  supports  Residential  Aged  Care  Facilities  (nursing  homes  and  hostels)  it  is  staffed  with  a  nurse  practitioner  and  senior  specialist  palliative  care  nurse.    Our  palliative  care  specialist  doctors  (GP  referral  needed)  and  pastoral  care  team  are  also  available  to  visit  patients  in  residential  aged  care  facilities.  As  well  as  volunteer  support  from  Palliative  Care  ACT  (they  have  approx.  20  trained  volunteers  supporting  these  residents).  

The  Outpatient  Clinics  allow  ambulant  patients  to  be  seen  by  our  specialist  palliative  care  medical  specialists  and  nurse  practitioner  and  operate  four,  four  hour  clinics  per  week.  As  well  as  a  monthly  MND  clinic  at  Phillip  Health  Centre.    

 

 

New  clinic  rooms  for  outpatient  consultations  (Photo  courtesy  of  Rachel  Bilton-­‐

Simek  2014)  

 

 

 

Hospital  Consultancy  Service:  

Palliative  care  specialists  provide  a  consultancy  service  to  all  ACT  public  and  private  hospitals  following  referral  from  the  treating  specialist.  Within  The  Canberra  Hospital  and  Calvary  Public  Hospital  the  service  includes  specialist  palliative  care  nurses.  

Bereavement  Care:  

The  social  workers  offer  bereavement  support  or  counselling  to  families  or  friends  of  patients  of  the  palliative  care  service.  The  service  offers  support  in  bereavement  to  all  our  families  of  patients  who  have  been  with  the  home  based  service  or  have  come  to  Clare  Holland  House.  Palliative  care  ACT  service  send  a  card  offering  support  and  written  information  just  after  someone  has  died,  and  again  at  the  first  anniversary.  Families  are  welcome  to  contact  the  social  workers  for  support  or  counselling  at  any  time  in  their  bereavement.  

In  conjunction  with  this  the  pastoral  care  team  arranges  regular  reflective  services  for  bereaved  families.  Families  of  patients  who  have  been  with  the  home  based  service  or  who  have  come  to  Clare  Holland  House  will  receive  an  invitation  and  are  welcome  to  attend  when  they  can.  These  services  are  free  of  charge.  

Education:    

Palliative  care  education  is  an  integral  role  of  Calvary  Health  Care  ACT  and  Clare  Holland  House.    A  full  time  palliative  care  educator  is  based  at  Clare  Holland  House  and  the  role  extends  through  the  local  health  care  sector.  

Within  the  scope  of  specialised  palliative  care  the  role  promotes  the  specialist  knowledge  and  skill  base  of  staff  within  the  service.  This  is  done  by  ongoing  in-­‐service  education  across  clinical  disciplines,  and  offers  mentorship  and  support  for  others  involved  in  palliative  care  education  and  support  in  all  settings.    

The  educator  is  also  responsible  for  providing  palliative  care  information  and  raising  palliative  care  awareness  and  thinking  throughout  Calvary  Health  Care  ACT.  This  is  achieved  with  the  assistance  of  the  Calvary  Learning  and  Development  team.  

The  educator  maintains  onsite  support  for  new  and  experienced  staff,  as  well  as  recent  graduates  any  students  attending  placements  at  Clare  Holland  House.  The  educator  also  maintains  contemporary  research  and  articles  relating  to  palliative  care  practice  and  research.  The  educator  is  available  to  participate  in  projects  that  promote  the  provision  of  palliative  care  and  give  rise  to  community  discussion  around  issues  of  death  and  dying.    

Social  Work:  

Our  social  workers  are  able  to  provide  information,  resources  and  support  for  social,  practical  and  psychological  or  emotional  needs  to  patients  and  their  families.  They  are  available  at  the  hospice  and  can  also  visit  patients’  homes.    These  Social  workers  are  practiced  at  liaising  with  government  departments  such  as  Centre  Link,  ACT  Housing  and  the  Public  Advocates  Office  and  are  aware  of  other  agencies  that  can  support  patients  and  their  families.  

Pastoral  Care:  

The  Pastoral  Care  Team  offers:  

• Spiritual  care,  assisting  patients  to  explore  questions  of  identity,  meaning,  and  fundamental  issues  of  life  and  death  

• Emotional  and  spiritual  support  for  patients  and  families.  

• Opportunities  for  reflection  for  patients  in  the  context  of  their  personal  beliefs  and  values  

• An  environment  and  resources  for  meditation  and  worship  for  persons  

Clare  Holland  House  chapel  (photo  of  unknown  source)  

Clare  Holland  House  Functions  room    

of  all  faiths  and  belief  • To  contact,  as  patients  and  families  request,  a  Minister,  Priest,  Monk,  Rabbi,  Pundit,  

or  significant  religious  figure  of  your  choice  • Support  for  rituals  that  are  significant  to  patients  and  their  families  • A  safe  place  to  express  feelings  with  freedom  • Time  out  and  opportunities  for  staff  to  debrief  and  cope    • Support  to  the  education  program,  either  directly  or  through  the  PEPA  program.  

Occupational  Therapy:  

We  have  an  occupational  therapist  (OT)  who  assists  patients  and  families  to  have  appropriate  equipment  and  support  to  suit  individual  client’s  needs,  especially  at  home.  The  OT  is  focussed  is  on  independence,  mobility  and  safety.  The  OT  will  assess  patients’  homes  with  patients  and  families  and  make  recommendations  to  support  care  at  home.  The  OT  will  often  make  suggestions  about  equipment  (including  rails)  or  minor  modifications  to  beds,  toilets  and  bathrooms  which  may  help  with  independence  and  safety.  Equipment  is  organised  and  accessed  from  the  ACT  Equipment  loans  service  and  is  free  of  charge.  Our  OT  also  attends  the  outpatient  MND  clinic,  offering  assessment  and  support  to  clients  as  required.  

Physiotherapy:  

Physiotherapy  can  be  offered  to  a  patient  receiving  home  based  palliative  care  or  an  inpatient.  A  physiotherapist  can  offer  a  variety  of  services  including  assessment  and  advice  on  safe  personal  mobility.  This  includes:  

• Walking,  transferring  from  bed  to  chair,  moving  around  in  a  bed,  etc.  

• Organising  provision  of  the  right  walking  aids  and  other  equipment  like  splints,  collars,  etc.  

• Assistance  in  the  management  of  lung  conditions  • Assistance  in  the  management  of  Lymphoedema  (swelling)  • Prescribing  exercises  to  help  with  strength  and  endurance  • Education  of  carers  is  also  included    • Support  of  nursing  staff  in  provided  safe  mobilisation  and  care.  

 

 PEPA  is  a  Program  of  Experience  in  a  Palliative  Approach  (PEPA).  PEPA  aims  to  improve  the  quality  and  accessibility  of  palliative  care  services  to  people  with  life  limiting  conditions  and  their  families.  The  contract  for  this  program  is  conducted  by  Calvary  ACT  from  the  Clare  Holland  House  site.  

PEPA  provides  a  broad  range  of  health  care  professionals  the  opportunity  to  increase  their  experience,  knowledge  and  skills  in  the  delivery  of  the  palliative  approach.  

In  the  ACT  this  is  achieved  through  supervised  clinical  placements,  workshops  and  post  placement  support.  

Our  service  has  some  key  features  including:  

• We  are  currently  undergoing  our  3rd  cycle  of  NSAP  review.  • We  utilise  PCOC  tools  throughout  our  service.  • We  use  PalCare  as  our  electronic  medical  record  throughout  the  service  and  our  • Inpatient  unit  is  the  first  pilot  site  in  the  ACT  to  utilise  MedChart  for  prescribing  an  

administering  medication.    

When  staff  were  asked  why  or  how  they  managed  to  work  in  the  Palliative  care  speciality  they  said:  

“It’s  actually  very  enjoyable  and  a  privileged  way  of  nursing”  Ward  RN  “Di”  

“It’s  a  special  area  to  work  in  and  special  people  work  in  it!  Ward  AIN  “Bruce”  

Others  came  up  with  words  like  “Challenging,  rewarding  and  fulfilling”  

Our  community  CNC  said  “We  have  a  lot  of  laughs-­‐  and  enjoy  a  great  team”  

Our  OT  said  :”  I  see  the  challenges  that  our  patients  face  as  a  normal  part  of  life-­‐  there’s  a  lot  of  sadness,  but  mostly  you  see  the  positive  aspects  of  human  nature  and  that’s  very  life  affirming”  

One  senior  RN  points  out  “I  work  with  living  people-­‐only  a  fraction  of  my  work  deals  with  death  and  dying....”