Supporting carers to help manage breakthrough symptoms safely using subcutaneous medicines

A guest blog by Prof. Liz Reymond, MBBS (Hons), FRACGP, FAChPM, PhD, Palliative Medicine Consultant Deputy Director, Metro South Palliative Care Service, Metro South Health, Queensland Government, Brisbane, QLD.

Most Australian palliative care patients prefer to be cared for at home and the majority want to die at home, though less than 10 per cent achieve that wish [1].

One of the most frequent reasons that community-based palliative patients have to be transferred to inpatient units is because their symptoms cannot be adequately controlled at home [2]; 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, carers and community service providers alike [3].

New innovative community end-of-life services that are better coordinated and that collaborate with carers are required to avoid poor patient outcomes [4].

One such model is to involve carers in helping to manage breakthrough symptoms using subcutaneous medicine. In this model of care community-based services integrate carers into the multidisciplinary team; an action appreciated by carers.

“..It makes you feel that you are part of it, that you are helping. It’s part of the business. At least you are contributing, you are not sitting there as an onlooker. You are in the picture.” [5]

Research, including findings from the Queensland Caring Safely at Home project evaluation, indicates 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 [6,7].

Carers have 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 [8].

“…I am thrilled that I can give Mum something while I am standing there and alleviate her pain and I am grateful…...” [ 9]

In June 2017, the Australian Government funded caring@home, a national project that is producing resources for organisations, health care professionals and carers to support carers to help manage breakthrough symptoms safely using subcutaneous medicines. The resources will be applicable in all jurisdictions across Australia.

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.

Project activities can be summarised as:

• Resource development
• Develop state and territory specific guidelines for the safe handling of medicines in the community
• Review and enhance existing Queensland specific resources for carers
• Translate select carer resources into five languages
• Develop education for registered nurses, general practitioners, nurse practitioners and pharmacists e.g. online modules, an app
• Develop workshop content for health care professionals
• Implementation / rollout
• Workshops in rural and remote areas
• Communication and marketing
• Evaluation.

If you would like further information about this project please go to www.caringathomeproject.com.au

REFERENCES

1. Productivity Commission. Introducing Competition and Informed User Choice into Human Services: Reforms to Human Services, Report No. 85. Canberra; 2017. Available from: http://www.pc.gov.au/inquiries/completed/human-services/reforms/report/human-services-reforms-overview.pdf.
2. 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): 484-489. Available from: doi.org/10.1177/1049909114531326
3. Gerrard R, Campbell J, Minton O et al. Achieving the preferred place of care for hospitalised patients at the end of life. Palliat Med. 2011; 25(4): 333-336. Available from: doi.org/10.1177/0269216310387459
4. Swerissen H, Duckett S. Dying well. Grattan Institute. 2014. Available from: https://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf. [Accessed 29 May 2018].
5. Israel F, Reymond L, Slade G et al. Lay caregivers’ perspectives on injecting subcutaneous medications at home. Int J Palliat Nurs. 2008; 14(8):390-395. Available from: doi.org/10.12968/ijpn.2008.14.8.30774
6. 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].
7. Healy S, Reymond L. Delivering quality care for palliative care patients. Scientia. 2015. Available from:http://www.scientia.global/sue-healy-professor-liz-reymond-delivering-quality-care-for-palliative-care-patients/. [Accessed 7 February 2017].
8. 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. Available from: doi.org/10.1177/0269216312464262
9. Israel F, Reymond L, Slade G et al. Lay caregivers’ perspectives on injecting subcutaneous medications at home. Int J Palliat Nurs. 2008; 14(8):390-395. Available from: doi.org/10.12968/ijpn.2008.14.8.30774