Frequently Asked Questions

caring@home is a nationally-funded project that aims to improve the quality of palliative care service delivery across Australia. The project resources support people to be cared for, and to die at home, if that is their choice.

caring@home has developed evidence-based, best-practice resources to support health professionals to teach carers to help manage breakthrough symptoms safely, using subcutaneous medicines, if that is something they want to do. The resources promote a national standardised approach and the use of consistent language.
 

caring@home resources are available for organisations, health professionals and carers to support carers to help manage breakthrough symptoms safely using subcutaneous medicines for a terminally-ill person they are caring for. The resources are applicable in all jurisdictions across Australia.

Resources are available for:

caring@home printed resources and instructions for reproducing the caring@home package for carers are freely available on this website for organisations and health professionals to access and download.

Organisations can order hard copies of the caring@home package for carers on this website.

Whilst the caring@home resources can be ordered free-of-charge during the life of the project (until 31 March 2021), in the longer term, services will need to reproduce the resources to use with their carers. All resources for training carers and instructions for reproducing the caring@home package for carers can be downloaded from this website.

The caring@home resources are available in Arabic, Greek, Italian, Simplified Chinese and Traditional Chinese, Tagalog and Vietnamese. Later in 2020, translated resources in Hindi and Punjabi will be available for people in those communities. These translated resources are available to download from the website.

The caring@home project can be contacted by:

Telephone: 1300 600 007
Email: caringathome@health.qld.gov.au
Website: www.caringathomeproject.com.au

You can register to receive monthly eNews updates about the project on the website.

The University of Technology Sydney is conducting evaluation of the project via surveys and interviews with carers and nurses.

Australians consistently say they want to die at home; but few achieve this. Palliative care aims to provide care for patients to live and die in their place of choice. A common reason for transfer to hospital is poor symptom management. Teaching carers to give subcutaneous medicines to help manage breakthrough symptoms safely is one strategy to support care and dying at home.

Educating the carer to help manage breakthrough symptoms using subcutaneous medicines reduces the time the patients may be in distress as the carer can help manage these symptoms quickly without having to wait for the support of a health professional and can potentially decrease unwanted and inappropriate admissions to acute care facilities.
 

The development of the resources was based on a review of existing Queensland-specific resources with input from nurse and carer focus groups and the caring@home Steering Committee, Education Advisory Group and National Implementation Advisory Committee. There have been several published articles as a result of the implementation of Queensland-specific resources.

Research indicates that with standardised support from health professionals, quality information and resources, carers can confidently, safely and competently give subcutaneous medicines to help manage breakthrough symptoms experienced by the person they are caring for. Carers’ confidence to undertake the task increases after education, especially after the first administration, and carers confidence remains the same regardless of whether the pharmacist, nurse or carer draws up the medicine. In bereavement, carers say they were pleased they had contributed to symptom management and generally feel empowered by the experience.

The caring@home resources support a standardised, best-practice and evidence-based approach to teaching carers to help manage breakthrough symptoms safely using subcutaneous medicines.

Resources have been developed to support services to develop or modify policy and procedures to support the use of the caring@home resources within their organisation.

The online education modules for registered nurses provide specific education for nurses about the caring@home resources.

Carer resources include the step-by-step guides, carers handbook, the practice demonstration kit, short training videos and the carer post-training competency assessment.

This is a service-specific decision and is based on the care team’s clinical judgement of the patient and the carer’s capacity to give subcutaneous medicines. Nurses use their clinical judgement consistently in their work and should continue to do so when determining carer suitability to give subcutaneous medicines. It is the service’s responsibility to have a policy in place about initial assessment and determining patient and carer suitability if they wish. A one-on-one training checklist and carer post-training competency assessment has been developed that can be completed to assess carers competency to give subcutaneous medicines.

Carers want to help manage breakthrough symptoms because they want to help ensure that the person they are caring for remains comfortable and stays at home, if that is their wish. Research tells us that carers who have managed subcutaneous medicines for a person who chooses to die at home say they feel a strong sense of achievement and satisfaction from being able to contribute to symptom relief for the person they are caring for. However, if the carer is not confident to take on the role, the carer needs to be reassured that the patient will still be well cared for by the community service. Evidence shows that carers remain motivated to help with symptom management as they believe their ability to provide subcutaneous medicines adds value to patients’ care.

Research indicates that, after education, 90% of carers were unconcerned about the possibility of giving the last injection before a person died and carers place high value on the ability to contribute immediately to the symptom needs of the person they are caring for [1]. Nurses need to provide reassurance as part of the communication about death and dying and be aware of the stressors on carers and provide support.

[1]  Israel, F, Reymond, L, Slade, G, Menadue, S, Charles, MA. Lay caregivers’ perspectives on injecting subcutaneous medications at home. Int J Palliat Nurs. 2008; 14(8): 390 – 395

If the carer does decide to take on this role, a nurse will teach them what they need to know in a one-on-one training session. There are many resources that have been developed by caring@home to support nurses to conduct this training including online education modules for registered nurses and the resources for carers: step-by-step guides, carers handbook, practice demonstration kit, videos and the competency checklist. These resources are designed to support nurses to teach carers to help manage breakthrough symptoms safely using subcutaneous medicines.

The resources for carers are left in the home so the carer can refer to them at any time. The carer is trained and supported by the nursing service/GP/pharmacist and has access to 24-hour phone support from medical professionals. Clinical judgement is important to determine which resources are most appropriate to meet the learning needs of the individual carers.

Teaching carers requires an initial time commitment of between 30 to 60 minutes. Actual time required depends on many factors however, it does save time later as carers are better prepared to care meaning less phone calls and call-outs for nurses.

The role of giving subcutaneous medicines is voluntary; nurses should communicate this to the carers and make it clear that they can cease this role at any time. The caring@home Information for carers brochure is a useful resource to support this discussion.

Conversations about giving subcutaneous medicines to help manage breakthrough symptoms should not occur in isolation instead, nurses, using their clinical judgement, should have these iterative conversations in the context of the preparatory discussions they are having about recognising clinical changes and deterioration in patients who are dying.

Patients and families become very distressed if symptoms are not managed in a timely fashion. If a patient and carer are waiting for a 24-hour service to visit there is a risk that the patient will be in distress until support arrives. Some services report that after-hours services response times may be lengthy leading to increased patient and carer distress. In addition, many patients and carers will not have access to a 24-hour home visiting service.

For patient safety and carer confidence, the caring@home resources must be used only by services that provide a 24-hour on-call phone number for carers, to provide appropriate clinical advice about managing subcutaneous medicines.

Focus group interviews with carers who used the resources found that carers valued having the reassurance of a 24-hour contact phone number even if they didn’t necessarily use it.