The Palliative Care Home Support Program: Creating partnerships, improving connections and supporting the choice to die at home Rod MacLeod

2. Palliative Care Home Support
Living to the end
21st Hospice New Zealand conference
Wellington, October 2014
Rod MacLeod and Sally Yule

4. Seeking to Address the Gaps
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
Education –
Palliative Care
Bridge
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

5. Working Together for a Common Goal
Consortium Collaborating with
• Medicare Locals
• 7 NSW LHDs
Specialist Palliative Care Teams
• Local community care providers
• Paediatric Palliative Care Network

6. Murrumbidgee
Far West
Western NSW
Central Coast
Northern Sydney
South East Sydney
Southern NSW

7. Model of Care
Supporting living to the end
Where did we start?
Local Palliative Care Teams
● Supplementing existing
palliative care work
● Guided by LHD experts
Opportunity to die at home
Patient/family with desire
to die at home
(deteriorating/terminal phase)
Choice and control
Patient/family in
consultation with local
Palliative Care Team plan
needs and preferences for
end-of-life
Linking and enabling
Links patients and local
palliative care teams with
upskilled care workers
Flexible support
● Available when the
patient/family chose
● Doing what the
patient/family need
Outcome
End-of-life care shaped
by the patient
(different in every case)

9. Training Modules
Module 1
– Essence of palliative care
– Ethical issues in palliative and end of life care
Module 2
– Grief and loss
– Self care
Module 3
– Pain and symptom management
– Last days
Module 4
– Communication
Module 5
– Paediatric Palliative Care

10. A Story
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’…

11. A Story
…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…

12. A Story
…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.

13. Palliative Care Bridge

14. Service Evaluation – University linked
• Modified QODD Scale - UNSW
• Hospital bed days saved
• Interview follow-up with families,
care workers and SPCT
• Longitudinal study on the impact
of quality of death and dying on
bereavement
• How was hope generated for
families?
Evaluation
Service
Provision
Education and
Training

15. Education Evaluation – University linked
• Care worker training - UNSW
• Palliative Care Bridge
Evaluation
Service Provision
Education
and
Training

16. Progress
• First package delivered October 2013
• Packages delivered in all 7 LHDs
• 79% of patients died at home
• Ongoing care worker training
• MOUs with 16 community care providers
• Distributed 1,500 Palliative Care Handbooks
• Recorded 26 education videos for Bridge

17. Palliative Care Home Support Program key
elements in HC Consortium model
1. Choice and control for patients and families
2. Supplementary resources for SPCTs
3. Supporting living to the end
Communication and collaboration with
LHDs central – driven by local palliative
care teams and patients

18. A HammondCare Consortium Service