Published on April 7, 2014
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
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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.’
Mitos y realidades de las sustancias psicoactivas
Mitos y realidades de las sustancias psicoactivas.
The Palliative Care Home Support Program . The Palliative Care Home Support Program provides end of life care for patients who wish to remain at home.
Palliative care is a comprehensive service for those diagnosed with a life threatening illness, when relief from symptoms or pain management may be required.
Palliative Care is a specialized form of health care used to support the needs of people facing progressive illness. This unique medical approach focuses ...
Our supportive and palliative care providers are board certified in internal and family ... Program Goals. Our primary ... emotional support, and care ...
What is palliative care? ... with a palliative care program. Many palliative care programs will not ... home care and personal support ...
Aims of the Program The aims of the Palliative Care Home Support Packages (PEACH) Program are: Increased opportunity for NSW palliative care clients to ...
... extended care facility, or nursing home that is associated with a palliative care ... whether terminal or chronic. In a palliative care program, ...
... Creating An Outpatient Palliative Care Program. ... support materials that address every aspect of program development for home-based palliative care.
Does NCI support palliative care ... palliative care at home, either under a physician’s care or ... grantlist.jsp?method=dynamic&program ...
Palliative care is specialized care focused on the ... Find a local hospital with a palliative care program. Provider Directory; About Us; Search ; Search ...