Anticipation of patient needs as end of life approaches
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Anticipation of patient needs as end of life approaches

Introducing the caring@home resources to a patient and carer - Debbie Kirkup, Nurse Practitioner from Metro South Palliative Care Service in Brisbane, Queensland recounts a recent patient and carer journey using the caring@home resources.  


Recently, I've looked after a patient with Motor Neurone disease who was referred to our service. The patient had dyspnoea and fatigue and was referred to our service by the hospital respiratory unit.

Most of the work I do is in anticipation of deterioration of the patient.

Introducing caring@home to patient and carer/s:

I saw the patient and family at home and discussed medications with them to assist with dyspnoea.

The family, patient and I discussed the patient's future care needs in anticipation of his health detoriating, for example when he is unable to swallow, and the need for subcutaneous medications and a Niki pump. The patient indicated that he would like to die at home. This decision was supported by his wife.

I introduced the caring@home package, and the family indicated they were keen to be involved in helping the patient in this way. I did not make an appointment to educate the family at this stage, as I felt it was right to give them some time to get used to the idea.

In a follow-up phone call three days later, I again spoke with the patient’s wife about caring@home and she indicated she would like to go ahead and be educated about using the package to support her husband and manage breakthrough symptoms. I then booked in a home visit for the following week.

Carer education:

At this home visit, I sat down with the carer and showed her the carer package and the resources it contains. We spoke about patient symptoms and which medications to use for these as well as how the colour-coded fridge chart works. The carer felt the chart was a good backup as a reminder of which drug treats which symptom. I also educated the carer on symptom management and record keeping with the Medicines Diary.

We then practiced drawing up medications with the demo kit and how to label the syringes correctly. The carer did a practical session on this process and said she felt confident by the end of the session. I assessed her as being competent by using the one-on-one training checklist and carer post-training competency assessment form.

I left the resources in the home for the carer to further review and practice with. She plans on showing these resources to a family member that is coming from overseas. The carer said that they feel confident using the USB training videos to refresh her knowledge if she’s not sure on any aspect of giving medications to manage breakthrough symptoms. She also has the 24-hour phone number to call if she has any concerns

Nursing perspective:

  • The caring@home package for carers is comprehensive, and includes everything you need to train the carer. This really takes the pressure off the nurse. Instead of trying to gather materials and print documents at the office, I can use a caring@home package and concentrate on providing education and support to the patient and family at a difficult time.
  • I found the USB videos to be very useful for the carers to refresh them on what they have been taught.
  • I found the one-on-one training checklist and carer post-training competency assessment form to be beneficial in prompting the carer to repeat information and identifying any learning gaps.
  • Personally, I allow at least 90 minutes to educate a carer. Other nurses allow 45 to 60 minutes. If drawing up medications, commencing a continuous subcutaneous infusion and educating carers in one session then it is closer to 3.5 hours. I often get family members to assist with drawing up medications while I am in the home to give them extra opportunities for practice.
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