Taking the crisis out of an expected home death

Jacqui Culver, Nurse Practitioner from Anglican Care tells us about Home Care Package providers using the caring@home resources.

Anglican Care were very keen to trial the caring@home resources because our day-to-day clinical practice with Home Care Package clients, supported by research tells us:    

• That most people want to die at home, however many people end up dying the hospital
• Family satisfaction with a person dying at home is high when they are well-supported by skilled and confident health professionals
• Family members fear not being able to access help if they need it for the person they are caring for and this feeling of helplessness can have long-term implications
• Having access to appropriate medicines and the skills to give medicines to help control breakthrough symptoms when it’s needed builds confidence in caring at home.

The caring@home package provides health care professionals with tools and resources to meet the final hurdle of timely symptom management at home, at a time when families often feel powerless and dependant on medical support.  

Anglican Care use the caring@home resources to train our nurses in subcutaneous medication administration before going on to train willing family members of a person reaching the end of their life wishing to die at home. Enthusiasm for this training was unanimous across everyone who participated.   

Case study

Colleen*, 87 years old, was diagnosed with heart failure, dementia and peripheral ischemia and had developed an ulcer on her toe.  She was being cared for at home by her husband and daughter. The health care team recognised that Colleen was approaching the last days of her life.

Colleen’s daughter was approached and indicated she was willing to learn how to give subcutaneous medicines for breakthrough symptoms. Colleen’s granddaughter, who had a nursing background, was also keen to learn. Colleen’s husband declined the opportunity to learn but he was happy that Colleen’s breakthrough symptoms could be managed at home by his daughter and granddaughter.

• The Nurse Practitioner consulted with Colleen’s GP and prescribed and collected breakthrough medicines from the pharmacy, undertaking education on medicine storage and security within the home.
• Training was given to Colleen’s daughter and granddaughter and was well received. Colleen’s granddaughter’s nursing knowledge gave her Aunt extra confidence.
• The Nurse Practitioner drew up the initial breakthrough medicines, labelled, boxed and stored them safely in the home. The family had access to video conferencing and a 24-hour phone line to a Registered Nurse and the Nurse Practitioner if needed.Two doses of medicine were given by the family. At a home visit the next day, the nurse noted that the family were confident and organised, Colleen was comfortable, and a sense of calm had settled over the home.
• Colleen’s granddaughter phoned the Nurse Practitioner once for advice regarding which symptoms she was witnessing in her grandmother and which medication would be best to give.

Colleen died peacefully with her family around her four days later.

Tips for Home Care Package providers on introducing caring@home resources

• It is important to start the conversation about dying early with a client and family, preferably at the start of your relationship with them.
• Once the family get over the initial shock of talking about dying, they are generally realistic, more comfortable and know it is on the horizon.  This is part of embracing the fact that dying is a natural part of life.
• Health care workers need to be trained and be comfortable talking about death and be aware that nurses will be delivering palliative care in the home to enable them to support clients and families.
• Implementing a nurse practitioner model is helpful as it means nurses have an experienced and available resource to call upon for advice and prescribing. This makes it easier to plan and deliver high-level care in the home.

caring@home resources can take the crisis out of dying when death is expected. Empowering family to be included in every aspect of care that they are comfortable to participate in promotes the value placed on being able to die comfortably at home.

*Name changed to protect privacy.

Listen to Jacqui, Prof Liz Reymond and Prof Deb Parker talk more on this subject at a recent LASA webinar.