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 ProgramCare 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…


…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.”


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

COMMON

GOAL

http://www.picacnsw.org.au/



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 CoastNorthern SydneySES

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 CareCase 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: [email protected]: Tuesday, 26 November 2013 5:21 PMTo: Sally YuleSubject: 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


Module Two

Part 1: Grief and loss

Part 2: Self 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 ProgramCare 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 VodcastsWhen to refer for specialist palliative care and/or end of life careCommunicating hope in end of life careCo-analgesics and initiating opioidsManaging 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 careManaging 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 diseaseOverview of syringe drivers in end of life carePalliative chemotherapy and radiotherapyPalliative care emergenciesComplicated 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-careMourning (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 ProgramCarer 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 ProgramPalliative 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.’