Supporting lay carers to provide palliative symptom management

The aim of modern palliative care, whether provided by generalist, or specialist service providers, is to support palliative patients to live and die within the context of their lives, in the setting of their choice, with symptom control and a pattern of care that is supportive of patients’ caregivers.

Most Australian palliative care patients prefer to be cared for at home and the majority want to die at home, though only about 16% of Australians achieve that wish [1]. While there is no nationally consistent data on the volume of community services providing palliative care, it is known to be limited [2].

One of the most frequent reasons that community-based palliative patients have to be transferred to in-patient units is because their symptoms cannot be adequately controlled at home [3]; few Australian patients have access to 24 hour professional care in the community. Apart from unwanted admissions and associated unnecessary healthcare costs, failure to achieve timely and effective control of symptoms has enormous consequences resulting in tremendous distress to patients, lay carers and service providers alike [4].

Increased capacity of community end-of-life services that are better coordinated and that collaborate with lay carers are required to avoid poor patient outcomes and unsustainable health care costs [1].

An example of a supportive model of care based on a partnership between lay and professional care providers is the Caring Safely at Home package. This package aims to achieve optimal outcomes for home-based palliative patients. In this model of care, community-based services can support lay carers by integrating them into the multidisciplinary team and provide them with best practice education and skills to manage breakthrough symptoms and administer subcutaneous injections if necessary.

Findings from the Queensland Caring Safely at Home evaluation, that included a randomised controlled trial, and research literature confirms that with standardised support from health professionals, adequate information and resources, lay carers can be taught the necessary skills to effectively manage a loved one at end of life at home, if that is their choice [5]. Lay carers reported a great deal of satisfaction from contributing to their loved one’s symptom control and that it impacts positively on their bereavement, conversely they report feeling disempowered when unable to provide adequate symptom management [6]. Evaluation included statements such as:

“…we knew when the pain hit we were able to do something to try to relieve it immediately without having to sit waiting powerless for someone else to come and do it. I believe it gave me the confidence to keep him at home to the very end.” [7]

Historically, some services have expressed concern about the practice of teaching lay carers the skills to manage symptoms and this has been reflected in their clinical practice. Anecdotal evidence suggests the reason for this concern has been due to organisational and individual uncertainty related to legal, jurisdictional and scope of practice issues for registered nurses, other health care workers and lay carers [7]. These issues were resolved in Queensland through the development of the Guidelines for the Handling of Medication in Community-Based Palliative Care Services in Queensland endorsed by Queensland Health.

In June 2017, the Australian Government funded a project Caring Safely for Australians at Home that will enable community service providers across Australia to access a standardised national evidence-based approach to incorporate lay carers into the multidisciplinary care team, should lay carers be willing to adopt the role.

This is a three year project being conducted by a consortium of Brisbane South Palliative Care Collaborative (lead agency), Aged & Community Services Australia, Australian Primary Health Care Nurses Association, CareSearch, Leading Age Services Australia, National Prescribing Service, Pharmaceutical Society of Australia, The Royal Australian College of General Practitioners and University of Technology, Sydney.

The project activities include:

• enhancing the current lay carer content (the Package) (from Queensland version)
• translating specific lay carer resources into five other commonly spoken languages in Australia
• creating a standardised educational resource for registered community service providers to train lay carers
• compiling State and Territory specific guidelines for the use of medications in the community
• developing an app based on ANZSPM endorsed list of medications recommended for use in palliative patients in the community
• developing relevant online education for community healthcare workers and for GPs
• developing a Package-based workshop targeted to specific service providers working with populations at risk of health inequalities e.g. Aboriginal and Torres Strait Islanders Health Services
• communication and marketing.

If you would like further information about this project please contact the Project Manager, Dr Karen Cooper karen.cooper3@health.qld.gov.au.
 
REFERENCES

1. Swerissen H, Duckett S. Dying well. Grattan Institute. ISBN: 978-1-925015-61-4. 2015 Available from: https://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf [Accessed 7 February 2017].
2. Australian Institute of Health and Welfare 2012. Palliative care services in Australia 2012. Cat. no. HWI 120. Canberra: AIHW; 2012. Available from: https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia-2012/contents/table-of-contents  [Accessed 7 February 2017].
3. Rosenberg JP, Bullen T, Maher K. Supporting family caregivers with palliative symptom management: A Qualitative Analysis of the Provision of an Emergency Medication Kit in the Home Setting. Am J Hosp Palliat Care. 2015; 32(5): 484-9.
4. Gerrard R, Campbell J, Minton O et al. Achieving the preferred place of care for hospitalised patients at the end of life. Palliat Med. 2010; 25: 333-336.
5. 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].
6. Healy S, Reymond L. Delivering quality care for palliative care patients. Scientia. 2015. Available from: https://www.scientia.global/sue-healy-professor-liz-reymond-delivering-quality-care-for-palliative-care-patients/ [Accessed 7 February 2017].
7. 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.

Professor Liz Reymond, Director, Brisbane South Palliative Care Collaborative