Palliative care is care provided for people of all ages who have a life limiting illness, with little or no prospect of cure, when the primary treatment goal is improved quality of life. During the palliative phase, care is focussed on promoting the person’s comfort by keeping symptoms under control as much as possible with medication, and trying to fulfil wishes the person may have expressed about their death. For many people, this includes being cared for and dying at home. The likelihood of a person being able to remain at home during this phase is often dependent on the availability of carers beyond the healthcare team – usually a close family member or friend. These carers often take on the responsibility of managing the person’s medications, as well as helping with self- care.
As people get weaker in the last weeks or days of life, they usually cannot swallow and are no longer able to take medications by mouth. In the UK, when this happens, it is standard practice for medications to be given under the skin to relieve symptoms. This is sometimes called subcutaneous medication (subcutaneous means “under the skin”) and can be done using a needle or a cannula. A cannula is a small plastic tube which is placed under the skin. Unlike needles, which are used separately each time a medication is needed, a cannula can be kept in for several days. If a person is on regular medications, a syringe driver or pump is often connected to the cannula to give medications continuously throughout the day and night to keep symptoms controlled.
The person may still experience some symptoms even when this is in place – these are called ‘breakthrough’ symptoms they may require extra as-needed doses of medication to be given. The most common breakthrough symptoms are pain, nausea/ vomiting, anxiety/agitation/restlessness, noisy 'rattly' breathing and breathlessness. When the person experiences breakthrough symptoms, the carer is usually advised to call the healthcare team, often a district nurse. They will visit and give the patient as- needed subcutaneous medication (medicine under the skin using a needle or a cannula that is in place). But, it can take a long time, often much more than an hour, for the healthcare team to arrive and give the as-needed medication. This wait can be distressing for patient and carer and the symptom can worsen during this time. Carers tell us that this makes them feel powerless to help the person they are caring for.
You have been given this booklet as one part of an education package that has been developed to train carers like yourself to be able to give these as-needed medications, using a cannula that is already in place. This means you do not need to use needles to give the medications – they are often called no-needle injections.
Using this education package, you will be trained how to recognise breakthrough symptoms described above. You will learn how to prepare and give no-needle injections. You will learn how to see if they work to relieve the symptom, and what to do next if they do not. This booklet forms part of the training that the healthcare team will give you, and explains common symptoms in the last days of someone’s life and how this could be treated with subcutaneous medication.
The person you are caring for will receive all their regular healthcare visits and medication as normal. The only thing that will change is that you will be trained to give as-needed medication for breakthrough symptoms. It is important to know that it is completely legal for carers to give symptom-relieving medications to dying patients as long as they are supported to do so. Even after you have been trained to give injections, you do not have to give it if you do not feel confident to do so. If you are in doubt if an injection is needed, you can, at any time, call the healthcare team looking after the person you are caring for at home.
Managing symptoms in the last days of life can sometimes be challenging. However, understanding the medications that are commonly used will help you identify the correct medication to give to control a particular symptom. To manage symptoms successfully it is essential that you talk with the healthcare team and let them know when symptoms are becoming bothersome or difficult to manage.
If you need any more detail on any aspect of caring for someone dying at home, please talk to the healthcare team supporting you at home.