Supporting palliative care patients who choose to die at home
Max* a 95-year-old man, was recently admitted to a private hospital in metropolitan Brisbane, Queensland. He had a history of cancer, had exhausted his disease-modifying treatment options, and the health care team recognised that Max was coming to the end of his life. The hospital’s palliative care team were asked to consult on Max’s case. After long discussions with Max and his family regarding his goals of care, his condition rapidly deteriorated over the following 24-hours.
Max had been very vocal to family, friends and the health care team about his desire not to die in hospital. If possible, he wanted to be at home, surrounded by his family and in his own bed. Max’s 75-year-old wife Betty* advocated strongly to honour her husband’s wishes.
Most Australians say they want to die at home if they can
Most Australians, like Max, say they would prefer to be cared for and, if possible, to die at home, however, over 50 per cent of people die in hospital . Many people in the terminal stage, despite their wish to be cared for at home, are admitted to inpatient facilities because their symptoms cannot be adequately controlled at home.
Prof Liz Reymond, Palliative Medicine Consultant and Project Director of caring@home, says that unwanted hospital admissions have implications for patients, carers, the health care team and the health care system.
“Failure to achieve timely and effective control of symptoms has enormous consequences resulting in tremendous distress to patients, carers and community service providers alike,” says Prof Reymond.
caring@home, an Australian Government-funded project, has produced a suite of resources that support home-based patients to be cared for, and to die at home, with optimal symptom control.
“The caring@home package supports health care professionals to teach carers to help manage breakthrough symptoms safely using subcutaneous medicines prescribed by the person’s doctor or nurse practitioner. If carers volunteer for this role, palliative care patients can remain at home for longer and may achieve a home death if that’s what they choose.”
Benefits for patients and their carers
Research has shown that carers who are supported with education and resources, tailored to their needs, can confidently, safely and competently manage subcutaneous medicines to relieve breakthrough symptoms in home-based palliative care patients [2, 3].
Carers have reported a great deal of satisfaction from contributing to symptom control of the person they are caring for and that it impacts positively on their bereavement . Conversely, they report feeling disempowered when unable to provide adequate and timely symptom management.
In Max’s situation, the caring@home resources were used by the hospital’s specialist palliative care team to successfully teach Betty to give subcutaneous medicines to help manage breakthrough symptoms that Max may have experienced at home, such as pain or anxiety.
By utilising the caring@home resources, the community-nursing service along with help from Betty were able to honour Max’s wish to die at home. He spent several hours at home, with his terminal symptoms well-controlled, before he died peacefully in the place of his choosing.
More choice for rural and remote patients
caring@home resources have been demonstrated to assist terminally-ill patients who live in rural and remote areas of Australia where palliative care services are sometimes not easily accessible.
Brett Hayes and his team from Wheatbelt Specialist Palliative Care Service in Western Australia look after up to 180 inpatient and community patients across 154,000 square kilometres, 24 hospitals and in the community.
“Because of the size of our region and the huge travel distances involved, it is sometime difficult to get out to all our patients in a timely way,” he says. “Recently, we’ve started using the caring@home resources along with video conferencing to teach carers to give subcutaneous medicines to help manage breakthrough symptoms in patients who want to die at home. The patient may be located several hours drive away from us.
“The caring@home package is very user-friendly and adaptable to solutions like video conferencing. It has helped to provide quality outcomes for rural and remote patients who have chosen to die at home, their carers and the health care team.”
Free resources available Australia-wide
caring@home resources are evidence-based and facilitate high-value care; supporting person-centred outcomes and improving service performance efficiency and effectiveness. National take-up of the project resources is proceeding apace, with more than 300 community services ordering the free resources to date.
The project has produced resources for organisations, health care professionals and carers that are applicable to all Australian jurisdictions, including:
• Guidelines for the handling of palliative care medicines in community services, developed by NPS MedicineWise
• A template example policy and procedure for organisations to tailor and guide the operational implementation of the resources
• The palliMEDS app for prescribers
• Online education modules for nurses concerning training of carers, endorsed by the Australian College for Nursing
• A comprehensive caring@home package for carers that contains step-by-step guides, a diary, videos, a practice demonstration kit and a colour-coded labelling system
• Selected carer resources available in five commonly-spoken languages
Preliminary evaluation by the University of Technology Sydney indicates the project has significantly improved community nurses’ knowledge, skills and confidence in providing palliative care for community-based patients. Carers report that the resources are easy-to-use and give them confidence in helping to manage breakthrough symptoms in the person they are caring for.
More information visit www.caringathomeproject.com.au
*names changed to protect patient privacy
1. Swerissen, H and Duckett, S., 2014, Dying Well. Grattan Institute
ISBN: 978-1-925015-61-4. https://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf
2. Healy S, Israel F, Charles M, Reymond L. Laycarers can confidently prepare and administer subcutaneous injections for palliative care patients at home: A randomized controlled trial. Palliat Med. 2018; 32(7):1-8.
3. National Institute for Health Research, Journals Library. CARer-Administration of as-needed sub-cutaneous medication for breakthrough symptoms in home-based dying patients: a UK study (CARiAD). Available from: https://www.journalslibrary.nihr.ac.uk/programmes/hta/151037/#/ [Accessed 6 February 2017].
4. Healy S, Israel F, Charles MA, Reymond L. An educational package that supports laycarers to safely manage breakthrough subcutaneous injections for home-based palliative care patients: development and evaluation of a service quality improvement. Palliat Med. 2013; 27(6): 562-570
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