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The Palliative Care Home Support Program
The Palliative Care Home Support
Program
A collaboration between HammondCare, Sacred Heart Health Service, Calvary Healthcare and
Specialist Palliative Care Teams in 7 NSW LHDs
PCNA 5th Biennial Conference
“Until the final night I would greet her with: „Good evening
M, I am Barbara and I will be with you all the night while
your daughters sleep next door.‟
For 8 nights I was sitting at her bedside from 10pm-6am
and even when I thought she might be unconscious I was
telling her: „I am leaving the room for a couple of minutes to
use the bathroom or to get a cup of tea, will be back in a
couple of minutes‟…
Palliative Care Home Support Program
Care worker feedback
…During the last night she had lots of discharge coming
from her lungs, and I had to wipe and change the napkin
under her face frequently.
Her bible and songbook were on her bedside table - I took
her bible and read.
After a long time reading I wondered if I should sing a
spiritual song and I did. By the end of the song, M opened
her eyes wide, moved her shoulders and changed her
breathing pattern…
Palliative Care Home Support Program
Care worker feedback
…I woke the daughters. All four were with their beloved
mum when she took her last breath - there was no rush, all
was peaceful and calm.
I took the position of an observer only.
After many tears, hugs and phone calls, I told them I would
like to reposition and clean M‟s body. They wanted to help
so we spent some time making M and her room beautiful
for visitors to come in the morning.
I left around 2:00 in the morning.”
Palliative Care Home Support Program
Care worker feedback
Dying at home
75%
25%
of Australians want to die at home
Dying at home
16%
59%
25%
of Australians actually die at home
Why?
1. Workforce shortage: specialist palliative care
doctors and nurses
2. Lack of access to well-trained, palliative care home
support workers
3. Perceived lack of knowledge and skills in
generalist-trained doctors and nurses providing
end-of-life care
Palliative Care Home Support Program
– a Consortium project
Palliative Care – Aged Care Collaboration
7 NSW LHDs –
SPC Teams
Medicare Locals
Local community
care providers
Paediatric Palliative
Care Network
C
O
M
M
O
N
G
O
A
L
Common goal
To help those who want to die at home to
have the opportunity to do so
Genuinely collaborative
• Collaborative from day 1
• Met with CEOs
• Met with Specialist Palliative Care Teams
• Asked how they wanted to use the packages in
their LHD – guided by them
• Our care workers join their team for package
duration
• SPCT and patient/family determine what c/w
does
Connecting and collaborating with 7 LHDs
Western
Murrubidgee
Far West
Southern
Metropolitan
Central Coast
Northern Sydney
SES
Governance
Shared governance
• Steering Committee - representatives from each
Consortium member and all participating LHDs
• Chair – Prof Rod MacLeod, Professor Palliative
Medicine, University of Sydney and Senior Staff
Specialist HammondCare
Supplementing existing services – 3 parts
Palliative Care
Home Support
Packages
48 hours end-of-life
home care
Care workers with
specialised
palliative care
training
Oversight and Case
Management by
existing Specialist
Palliative Care
teams
State-wide
Palliative Care
Education
Specialised
vocational palliative
care training for
care workers
(Registered
Training
Organisation)
Professional
education for
generalist trained
healthcare
professionals
(Learning and
Research Centre)
Evaluation
Service Provision
Education and
Training
Palliative Care Home Support Packages
Palliative Care
Home Support
Packages
48 hours end-of-life
home care
Care workers with
specialised
palliative care
training
Oversight and Case
Management by
existing Specialist
Palliative Care
teams
• Rapid response end-of-life supportive
care provided by care workers with
specialised palliative care training:
– Assistance with ADLs
– Personal and domestic care support:
• Personal care
• Household assistance, shopping
• Basic nursing care
• Carer support
• Consumables, as required
• Access to equipment pools (in kind)
Working under the guidance of palliative care
specialists
Existing Specialist Palliative
Care Service Provider
identifies need and requests
package based on eligibility
criteria
Palliative Care Home Support
Worker joins
existing multi-disciplinary
Palliative Care Team delivering
up to 48 hours end-of-life care
under guidance of SPCT
Palliative Care
Case Manager
introduces and briefs Palliative
Care Home Support Worker at
patient‟s home.
HammondAtHome responds to
package request and arranges
Palliative Care Home Support
Worker
Patient, family, SPCT agree
and guide care
End of package review
with SPCT, patient &
family regarding need for
additional service.
Eligibility Criteria
• Patient has expressed a wish to die at home; AND
• their palliative care phase is either deteriorating or terminal; AND
one or more of the following are present:
 Family carer is physically/emotionally unable to continue caring at
home without support
 There is limited family support
 There are specific cultural/spiritual issues necessitating extra support
 Carer stress is high
 Functional ability of patient is poor (AKPS of 40 or less, or RUG ADL
of 13 or more
Greatest point of need
• Central administration of packages ensures
hours of care support go to point of greatest
need in metro, regional and rural areas
• Residual hours made available to others who
need them – greatest point of need
Targeted recruitment
• Recruitment - not a place for L-platers
• Experienced community care workers
• HC staff in areas we have services – Northern
Sydney, SES, Central Coast and the Eastern
part of Western NSW
• Where no HC service, MOUs with community
care providers recommended by LHDs
• Self selection by staff
Care worker training
• Training material based on successful palliative
care training of 5,000 care workers in NZ
• Revised for Australian setting
• 4 modules over 2 half days
• Local SPC Teams join with HC to provide
training
Meant to send this - graduating class
From: 61404801447@online.telstra.com.au
Sent: Tuesday, 26 November 2013 5:21 PM
To: Sally Yule
Subject: Fwd:
Broken Hill – Grief, Loss & Self-Care
Fundamentals of end of life care
Module One
Part 1: Essence of palliative care
Part 2: Ethical issues in palliative and
end of life care
Fundamentals of end of life care
Module Two
Part 1: Grief and loss
Part 2: Self care
Fundamentals of end of life care
Module 3
Part 1: Pain and symptom management
Part 2: Last days
Module 4
Communication
Feedback from Care Worker Training
evaluations
This has been the best course I have been
involved in. Congratulations to all involved.
I thought the training was excellent and very
helpful.
All speakers on the course are good at what
they do and helpful with anything we needed to
ask. Really enjoyed the course and learnt what
is needed.
Palliative Care Home Support Program
Care Worker role
• Whatever is needed! Mostly personal care & support for
exhausted carers
• Allows carers to take a break & continue to provide care
• Gives carers confidence to be supported and to
rest, particularly at night knowing their loved one is in
good hands
• Majority of packages: overnight care
Palliative Care Learning and Research
State-wide
Palliative Care
Education
Specialised
vocational palliative
care training for
care workers
(Registered
Training
Organisation)
Professional
education for
generalist trained
healthcare
professionals
(Learning and
Research Centre)
Building on existing resources & experience
• Strong information technology foundation
enables face-to-face and distance
education
• Registered Training Organisation
• Palliative and Supportive Care Learning
and Research Centre
State Wide Education Program – digital platform
Program Activity
One hour
Forums
Referring for specialist palliative care input and
communicating hope
Opioids and other subcut medications for use in end of life
care
Managing terminal care in the home
Achieving best quality of life in end of life care (all health
professionals)
Information
Sessions
(1.5 hours)
Corowa – 18 February 2014, 6.00pm-8.00pm, Corowa
RSL
SE Sydney – 26 March 2014, 7.30pm-9.30pm
State Wide Education - 18 Vodcasts
When to refer for specialist palliative care and/or end of life care
Communicating hope in end of life care
Co-analgesics and initiating opioids
Managing Neuropathic pain in end of life care
Managing nausea and vomiting in end of life care
Bowel care and intestinal obstruction in end of life care
Depression and anxiety in end of life care
Sleep disorders in palliative care
Palliative sedation – what does it really mean?
Respiratory symptoms and managing secretions in end of life care
Managing fatigue in palliative care
Cachexia and anaemia: what action is needed in end of life care?
Hypercalcaemia in malignant disease and palliative care emergencies
Renal failure and prescribing in late stage disease
Overview of syringe drivers in end of life care
Palliative chemotherapy and radiotherapy
Palliative care emergencies
Complicated grief – what is it and can it be prevented?
13 Recorded Sessions – Talking Head with PP
Skin (itch, sweating, pressure area care)
Lymphoedema
Fungating wounds and tumours
Diabetes, hyperglycaemia and hypoglycaemia
Using steroids
The last days or hours
Psychosocial
Ethical Issues
13 Recorded Sessions – Talking Head with PP
Spirituality
Advance care planning and advance directives
Collaborative (multidisciplinary) care
Care of the informal care giver
Bereavement and self-care
Mourning (culture and social norms)
Children and grief
Service Evaluation
Service Provision
• Measure KPIs related to death at home
and standard care & quality outcomes
• Interview follow-up with families by
trained assessor
Education and Training
• Formal arms-length assessment
– Surveys via focus groups and interviews of
participants and patients/families/carers
Evaluation
Service Provision
Education and
Training
Evaluation
• UNSW
• Qualitative: Was it a good death?
• Quantitative: Hospital bed days saved
Green light Sept 2013 – where are we up to?
• First package delivered October 2013
• 120 care workers trained in 7 LHDs
• 52 packages delivered
• 48 patient deaths; 33 died at home with a package
• 4 patients utilised second package
• Average package turnaround
< 12 hours and in most cases < 6
Care Worker training across 7 LHDs
• 20 in Broken Hill
• 25 in Narrandera
• 25 in Corowa
• 25 in Batemans Bay
• 25 in Sydney covering services in Nth
Sydney, Central Coast, SES and Western
NSW
“Last night's visit went brilliantly. I went to bed at around
11pm and slept soundly until 4am when Helen (care
worker) woke me to help get D back to bed. D was quite
confused at the time, but went back to bed for me. I then
fell straight back to sleep and slept soundly until 7am.”
Palliative Care Home Support Program
Carer feedback
“We had our first package approved yesterday and the care
worker worked last night - 10pm to 6am.
The husband reported this morning that despite his wife
being unsettled during the night, he had the best sleep he
has had in weeks. He said the care worker was absolutely
brilliant and already he feels so much better and couldn't
thank us enough for organising the much needed support.”
Palliative Care Home Support Program
Palliative Care Nurse feedback
Collaboration and convergence
• Collaboration across aged and sub-acute care to
help people to die at home if that is their wish
• Ministry of Health - Paediatric networks - LHDs
• Specialist community palliative care services
• Medicare locals
• GP and generalist health care professionals
• Keeping people out of hospital
• Link with after hours palliative care helpline from
mid 2014
The Palliative Care Handbook
Guidelines for clinical
management and
symptom control
Palliative Care Handbook
‘The palliative Care Handbook belongs wherever
palliative care occurs. It has a record of giving
confidence to all who turn to it and, it is hoped,
comfort to those approaching death so that they
have the best opportunity to live life to the full to
the very end.’
The Palliative Care Home Support Program

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The Palliative Care Home Support Program

  • 2. The Palliative Care Home Support Program A collaboration between HammondCare, Sacred Heart Health Service, Calvary Healthcare and Specialist Palliative Care Teams in 7 NSW LHDs PCNA 5th Biennial Conference
  • 3. “Until the final night I would greet her with: „Good evening M, I am Barbara and I will be with you all the night while your daughters sleep next door.‟ For 8 nights I was sitting at her bedside from 10pm-6am and even when I thought she might be unconscious I was telling her: „I am leaving the room for a couple of minutes to use the bathroom or to get a cup of tea, will be back in a couple of minutes‟… Palliative Care Home Support Program Care worker feedback
  • 4. …During the last night she had lots of discharge coming from her lungs, and I had to wipe and change the napkin under her face frequently. Her bible and songbook were on her bedside table - I took her bible and read. After a long time reading I wondered if I should sing a spiritual song and I did. By the end of the song, M opened her eyes wide, moved her shoulders and changed her breathing pattern… Palliative Care Home Support Program Care worker feedback
  • 5. …I woke the daughters. All four were with their beloved mum when she took her last breath - there was no rush, all was peaceful and calm. I took the position of an observer only. After many tears, hugs and phone calls, I told them I would like to reposition and clean M‟s body. They wanted to help so we spent some time making M and her room beautiful for visitors to come in the morning. I left around 2:00 in the morning.” Palliative Care Home Support Program Care worker feedback
  • 6. Dying at home 75% 25% of Australians want to die at home
  • 7. Dying at home 16% 59% 25% of Australians actually die at home
  • 8. Why? 1. Workforce shortage: specialist palliative care doctors and nurses 2. Lack of access to well-trained, palliative care home support workers 3. Perceived lack of knowledge and skills in generalist-trained doctors and nurses providing end-of-life care
  • 9. Palliative Care Home Support Program – a Consortium project
  • 10. Palliative Care – Aged Care Collaboration 7 NSW LHDs – SPC Teams Medicare Locals Local community care providers Paediatric Palliative Care Network C O M M O N G O A L
  • 11. Common goal To help those who want to die at home to have the opportunity to do so
  • 12. Genuinely collaborative • Collaborative from day 1 • Met with CEOs • Met with Specialist Palliative Care Teams • Asked how they wanted to use the packages in their LHD – guided by them • Our care workers join their team for package duration • SPCT and patient/family determine what c/w does
  • 13. Connecting and collaborating with 7 LHDs Western Murrubidgee Far West Southern Metropolitan Central Coast Northern Sydney SES
  • 14. Governance Shared governance • Steering Committee - representatives from each Consortium member and all participating LHDs • Chair – Prof Rod MacLeod, Professor Palliative Medicine, University of Sydney and Senior Staff Specialist HammondCare
  • 15. Supplementing existing services – 3 parts Palliative Care Home Support Packages 48 hours end-of-life home care Care workers with specialised palliative care training Oversight and Case Management by existing Specialist Palliative Care teams State-wide Palliative Care Education Specialised vocational palliative care training for care workers (Registered Training Organisation) Professional education for generalist trained healthcare professionals (Learning and Research Centre) Evaluation Service Provision Education and Training
  • 16. Palliative Care Home Support Packages Palliative Care Home Support Packages 48 hours end-of-life home care Care workers with specialised palliative care training Oversight and Case Management by existing Specialist Palliative Care teams • Rapid response end-of-life supportive care provided by care workers with specialised palliative care training: – Assistance with ADLs – Personal and domestic care support: • Personal care • Household assistance, shopping • Basic nursing care • Carer support • Consumables, as required • Access to equipment pools (in kind)
  • 17. Working under the guidance of palliative care specialists Existing Specialist Palliative Care Service Provider identifies need and requests package based on eligibility criteria Palliative Care Home Support Worker joins existing multi-disciplinary Palliative Care Team delivering up to 48 hours end-of-life care under guidance of SPCT Palliative Care Case Manager introduces and briefs Palliative Care Home Support Worker at patient‟s home. HammondAtHome responds to package request and arranges Palliative Care Home Support Worker Patient, family, SPCT agree and guide care End of package review with SPCT, patient & family regarding need for additional service.
  • 18. Eligibility Criteria • Patient has expressed a wish to die at home; AND • their palliative care phase is either deteriorating or terminal; AND one or more of the following are present:  Family carer is physically/emotionally unable to continue caring at home without support  There is limited family support  There are specific cultural/spiritual issues necessitating extra support  Carer stress is high  Functional ability of patient is poor (AKPS of 40 or less, or RUG ADL of 13 or more
  • 19. Greatest point of need • Central administration of packages ensures hours of care support go to point of greatest need in metro, regional and rural areas • Residual hours made available to others who need them – greatest point of need
  • 20. Targeted recruitment • Recruitment - not a place for L-platers • Experienced community care workers • HC staff in areas we have services – Northern Sydney, SES, Central Coast and the Eastern part of Western NSW • Where no HC service, MOUs with community care providers recommended by LHDs • Self selection by staff
  • 21. Care worker training • Training material based on successful palliative care training of 5,000 care workers in NZ • Revised for Australian setting • 4 modules over 2 half days • Local SPC Teams join with HC to provide training
  • 22. Meant to send this - graduating class From: 61404801447@online.telstra.com.au Sent: Tuesday, 26 November 2013 5:21 PM To: Sally Yule Subject: Fwd:
  • 23. Broken Hill – Grief, Loss & Self-Care
  • 24. Fundamentals of end of life care Module One Part 1: Essence of palliative care Part 2: Ethical issues in palliative and end of life care
  • 25. Fundamentals of end of life care Module Two Part 1: Grief and loss Part 2: Self care
  • 26. Fundamentals of end of life care Module 3 Part 1: Pain and symptom management Part 2: Last days Module 4 Communication
  • 27. Feedback from Care Worker Training evaluations This has been the best course I have been involved in. Congratulations to all involved. I thought the training was excellent and very helpful. All speakers on the course are good at what they do and helpful with anything we needed to ask. Really enjoyed the course and learnt what is needed.
  • 28. Palliative Care Home Support Program Care Worker role • Whatever is needed! Mostly personal care & support for exhausted carers • Allows carers to take a break & continue to provide care • Gives carers confidence to be supported and to rest, particularly at night knowing their loved one is in good hands • Majority of packages: overnight care
  • 29. Palliative Care Learning and Research State-wide Palliative Care Education Specialised vocational palliative care training for care workers (Registered Training Organisation) Professional education for generalist trained healthcare professionals (Learning and Research Centre) Building on existing resources & experience • Strong information technology foundation enables face-to-face and distance education • Registered Training Organisation • Palliative and Supportive Care Learning and Research Centre
  • 30. State Wide Education Program – digital platform Program Activity One hour Forums Referring for specialist palliative care input and communicating hope Opioids and other subcut medications for use in end of life care Managing terminal care in the home Achieving best quality of life in end of life care (all health professionals) Information Sessions (1.5 hours) Corowa – 18 February 2014, 6.00pm-8.00pm, Corowa RSL SE Sydney – 26 March 2014, 7.30pm-9.30pm
  • 31. State Wide Education - 18 Vodcasts When to refer for specialist palliative care and/or end of life care Communicating hope in end of life care Co-analgesics and initiating opioids Managing Neuropathic pain in end of life care Managing nausea and vomiting in end of life care Bowel care and intestinal obstruction in end of life care Depression and anxiety in end of life care Sleep disorders in palliative care Palliative sedation – what does it really mean? Respiratory symptoms and managing secretions in end of life care Managing fatigue in palliative care Cachexia and anaemia: what action is needed in end of life care? Hypercalcaemia in malignant disease and palliative care emergencies Renal failure and prescribing in late stage disease Overview of syringe drivers in end of life care Palliative chemotherapy and radiotherapy Palliative care emergencies Complicated grief – what is it and can it be prevented?
  • 32. 13 Recorded Sessions – Talking Head with PP Skin (itch, sweating, pressure area care) Lymphoedema Fungating wounds and tumours Diabetes, hyperglycaemia and hypoglycaemia Using steroids The last days or hours Psychosocial Ethical Issues
  • 33. 13 Recorded Sessions – Talking Head with PP Spirituality Advance care planning and advance directives Collaborative (multidisciplinary) care Care of the informal care giver Bereavement and self-care Mourning (culture and social norms) Children and grief
  • 34. Service Evaluation Service Provision • Measure KPIs related to death at home and standard care & quality outcomes • Interview follow-up with families by trained assessor Education and Training • Formal arms-length assessment – Surveys via focus groups and interviews of participants and patients/families/carers Evaluation Service Provision Education and Training
  • 35. Evaluation • UNSW • Qualitative: Was it a good death? • Quantitative: Hospital bed days saved
  • 36. Green light Sept 2013 – where are we up to? • First package delivered October 2013 • 120 care workers trained in 7 LHDs • 52 packages delivered • 48 patient deaths; 33 died at home with a package • 4 patients utilised second package • Average package turnaround < 12 hours and in most cases < 6
  • 37. Care Worker training across 7 LHDs • 20 in Broken Hill • 25 in Narrandera • 25 in Corowa • 25 in Batemans Bay • 25 in Sydney covering services in Nth Sydney, Central Coast, SES and Western NSW
  • 38. “Last night's visit went brilliantly. I went to bed at around 11pm and slept soundly until 4am when Helen (care worker) woke me to help get D back to bed. D was quite confused at the time, but went back to bed for me. I then fell straight back to sleep and slept soundly until 7am.” Palliative Care Home Support Program Carer feedback
  • 39. “We had our first package approved yesterday and the care worker worked last night - 10pm to 6am. The husband reported this morning that despite his wife being unsettled during the night, he had the best sleep he has had in weeks. He said the care worker was absolutely brilliant and already he feels so much better and couldn't thank us enough for organising the much needed support.” Palliative Care Home Support Program Palliative Care Nurse feedback
  • 40. Collaboration and convergence • Collaboration across aged and sub-acute care to help people to die at home if that is their wish • Ministry of Health - Paediatric networks - LHDs • Specialist community palliative care services • Medicare locals • GP and generalist health care professionals • Keeping people out of hospital • Link with after hours palliative care helpline from mid 2014
  • 41. The Palliative Care Handbook Guidelines for clinical management and symptom control
  • 42. Palliative Care Handbook ‘The palliative Care Handbook belongs wherever palliative care occurs. It has a record of giving confidence to all who turn to it and, it is hoped, comfort to those approaching death so that they have the best opportunity to live life to the full to the very end.’

Notes de l'éditeur

  1. 38 patients (4 patients required &amp; received 2nd package)
  2. 38 patients (4 patients required &amp; received 2nd package)
  3. 38 patients (4 patients required &amp; received 2nd package)
  4. 38 patients (4 patients required &amp; received 2nd package)
  5. 38 patients (4 patients required &amp; received 2nd package)