Supporting carers to help manage symptoms in home-based palliative care patients during the COVID-19 pandemic

A blog post written by Professor Liz Reymond, Director, Brisbane South Palliative Care Collaborative and Deputy Director, Metro South Palliative Care Service

COVID-19 presents an unprecedented challenge for patients, carers, and health professionals. Aspects of palliative care delivery will change, though the goals of palliative care will not. [1] It is vitally important that clinical services, carers and family members have access to resources and information to support them to deliver an appropriate level of care for people who choose to be cared for, and to die at home, if possible. [2,3]

caring@home, supported by the Australian Government, have responded to this challenge by producing augmented caring@home packages for carers. This package is a resource for service providers to use with carers to assist with the provision of patient-centred, home-based palliative care, while limiting the risks of community COVID-19 transmission.

In addition to the regular caring@home resources, which support a carer to help safely manage breakthrough symptoms using subcutaneous medicines in home-based palliative care patients, the augmented package for carers contains an emergency COVID-19 pack. The emergency pack is for use when hospital or community clinicians are unable to insert subcutaneous cannulas in palliative patients at home, for example, if adequate PPE is not available.

The emergency COVID-19 pack contains short training videos and step-by-step guides that health professionals can use to teach volunteer carers how to insert a cannula and/or how to give a subcutaneous injection of medicine with support through remote communication, for example via telehealth or telephone. Volunteer carers can use the clinical items included in the emergency pack for the patient and to practice with.

Carers will need adequate education delivered by a health professional along with a 24-hour phone support line for the carer to ensure safety and provide advice and reassurance. [4,5]

Importantly, the emergency COVID-19 packs have been produced specifically for use during the COVID-19 pandemic. The emergency pack contents can be easily removed, and the remaining ‘regular’ package used for patients not at risk, or diagnosed with, COVID-19.

The caring@home resources have been used extensively by health professionals across Australia since their release in October 2018. Carers have reported the caring@home resources and training were easy to understand and pitched at their level. The caring@home package helped reduce the stress of giving subcutaneous medicines and gave them the skills required to give subcutaneous medicines. All carers would recommend the training and caring@home package to others.

Nurses can complete online education modules prior to using the caring@home resources with carers. Evaluation data from nurses who have completed the education show significant increases in knowledge, skills and confidence. Nurses commented that the education was relevant to their learning needs and clinical practice. All nurses indicated that they would use the knowledge gained from the education in their clinical practice.

Augmented caring@home packages for carers are available free of charge and in unlimited numbers from www.caringathomeproject.com.au. This factsheet provides further information. 

For further information contact: caringathome@health.qld.gov.au or phone: 1300 600 007

References

1. National Institute for Health and Care Excellence (NICE). COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community (NICE Guideline 163) [Internet]. NICE; 2020 Apr 3 [updated 2020 Apr 30; cited 2020 May 22]
2. Bowers B, Pollack K, Barclay S. Administration of end-of-life drugs by family caregivers during COVID-19 pandemic. BMJ. 2020 Apr 24;369:m1615. doi: 10.1136/bmj.m1615.
3. 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 Jun;27(6):562-70. doi: 10.1177/0269216312464262. Epub 2012 Nov 21.
4. 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 Jul;32(7):1208-1215. doi: 10.1177/0269216318773878. Epub 2018 May 11.
5. Poolman M, Roberts J, Byrne A, Perkins P, Hoare Z, Nelson A, et al. CARer-ADministration of as-needed subcutaneous medication for breakthrough symptoms in home-based dying patients (CARiAD): study protocol for a UK-based open randomised pilot trial. Trials. 2019 Feb 7;20(1):105. doi: 10.1186/s13063-019-3179-9. 

Professor Liz Reymond, Director, Brisbane South Palliative Care Collaborative and Deputy Director, Metro South Palliative Care Service