Symptom management in the last days of life refers to care given to treat unwanted experiences, such as pain or nausea, sometimes associated with the dying phase. Symptom management includes many different types of care that can range from simple things such as changes in position, to needing extra medications. This booklet only considers the use of as-needed subcutaneous injections for symptom management of five common symptoms in dying people: pain, nausea/vomiting, anxiety/agitation/restlessness, noisy 'rattly' breathing and breathlessness.
Symptoms can be distressing for people and decrease their quality of life. This is why we try to keep them well managed. People who have expressed a wish to be cared for and die at home may be less likely to have unplanned admissions to hospital or hospice if their symptoms are well managed.
If pain or other symptoms that cause discomfort are allowed to build up, they can become much harder to control than if steps are taken to manage them at the first sign of their appearance – this is what good symptom management is all about.
Symptoms are often controlled with medications given at regular times, or continuously through a syringe pump, throughout the day and night. Sometimes, however, the person may experience some symptoms even when this is in place – these are called ‘breakthrough’ symptoms and the most common ones are pain, nausea/vomiting, anxiety/agitation/restlessness, noisy 'rattly' breathing and breathlessness.
Dealing with the breakthrough symptom may require giving an extra dose of medication, often called ‘as-needed,’ ‘breakthrough’ or ‘PRN’ medication. Such medications will be prescribed by the healthcare team.
Symptoms in people in the last days of their life can appear very quickly. We prepare for this by reviewing the person regularly to see what changes in medications or other treatment may be needed. Sometimes we can predict what may occur (like the common symptoms) and have plans in place in case it actually does occur. This is why ‘as-needed,’ ‘breakthrough’ or ‘PRN’ medications are prescribed in advance. This is known as anticipatory prescribing and sometimes called ‘just in case’ medications. This medication should be given at the first sign of an unwanted symptom, before it has a chance to build up, remembering that medications can take up to 20 minutes to take effect.
If a person cared for at home is on any continuous or as-needed subcutaneous medication, this will be clearly prescribed on a medication chart which is left in the house. Usually, only members of the healthcare team will record on this, for example when a syringe driver or pump is reloaded or they have given any as-needed injections.
For the CARiAD package, the healthcare team will still prescribe on this medication chart and leave it in the house. Then, the nurse training you will give you further information that will help you understand more detail about the medication(s). This will help you to be able to give the best medication at the right time for a particular symptom. The nurse will write these detailed instructions in the Carer Diary so that you can check this every time you think an injection is needed. This will remind you exactly what medications to give, how much to give and how often you can give them.
The nurse will show you how to complete the details of any medication you have given in your Carer Diary. A member of the visiting healthcare team will check the Carer Diary with you at every visit and carry over parts of the information to complete the medication chart: they will write the medication details and time given, and note that you have given it.
All carers who have been trained to give as-needed subcutaneous medications to the person they are caring for will need to complete the Carer Diary. Even if you decide you do not want to give the injection yourself, there is space to record what happens each time the person you are caring for experiences breakthrough symptoms. Some carers may feel that they want to complete both the Carer Diary page and enter the additional information into the formal medication chart (usually completed by the healthcare team). Your nurse will discuss this with you and agree the best plan for you. Even if you decide you do not want to give the as-needed medication yourself you should still complete the Carer Diary and indicate that you called the healthcare team to do this.
You should check the patient after 30 minutes to see whether the symptom is getting better after giving an injection (and record this in the Carer Diary), but it may take up to one hour to be sure if it has helped or not. If, in that hour, the symptom for which you have given the injection is getting worse, not getting any better at all, or if you are worried for any reason, call your healthcare team straight away. It is likely that a doctor or nurse will want to come and visit the person you are caring for to see why the medication is not working.
Most of the medications that you will be shown how to use for breakthrough symptoms should not be given more than once every four hours.
The as-needed medication for pain can sometimes be used slightly differently. If the first no-needle injection does not reduce the person’s pain enough within the first hour after it has been given, you may be allowed to give the next dose early instead of having to wait for four hours to pass. This might mean that you are given permission to give an extra dose of as-needed medication for pain one hour after the previous dose if this has not worked. If you need to give this extra dose, you should inform your healthcare team straight away. The doctor or nurse may wish to come to visit the person you are caring for.
Being allowed to give an extra dose after one hour may not be the best course of action for everyone so the decision will be made by your healthcare team who will discuss this with you.
No, you will not be able to give no-needle injections for every possible symptom that someone might experience in the last days of life. There are several reasons for this. Firstly, the CARiAD package is focussing on five common symptoms that may happen in the last days of life. These are pain, nausea/vomiting, anxiety/agitation/restlessness, noisy 'rattly' breathing and breathlessness. Because they are very common symptoms we already know a lot about how these symptoms might look in patients and which drugs are the best to use.
We know that some less common symptoms may also need medication via subcutaneous injection, for example seizures. If the person you are caring for experiences these symptoms, you will be asked to call the healthcare team to give an injection.
The second reason that you will not be able to give injections for all symptoms is that not all unwanted experiences or symptoms in the last days of life are best dealt with giving an injection. An example of this is itching where the use of skin creams would be used instead of a no-needle injection.
It is also important to remember that you can only give medications for breakthrough symptoms whilst the person you are caring for is receiving care in their own home (or usual place of residence). If the person is admitted to an inpatient unit, including a hospital or hospice, the medical team will be responsible for their medications and you should not give any medications yourself.
No, you cannot give more than three (3) doses of medication for the same symptom in any 24 hour period. The reason for this is that, if someone needs frequent as-needed medication, the symptom might not be controlled well enough and a doctor or nurse should see the patient. They can then assess the person and the regular medication they are receiving to see if this needs to be changed to help control the symptoms. After you have given three doses of medication for the same symptom in less than 24 hours, you will need to let your healthcare team know straight away so that they can come to review the person you are caring for. You should not wait until the next dose is needed.
If you think you have made an error with the amount of drug you have given or you have given too many doses, you should contact your healthcare team straight away and make them aware of this. If you think you have given the correct doses but the person you are caring for is having unusual symptoms or you are concerned about their response to a no-needle injection, you should contact the healthcare team.
Medications are given to help control symptoms and keep the person you are caring for as comfortable as possible, but they may also cause unwanted effects (also known as adverse or side effects). Your healthcare team will always consider the symptoms a person is experiencing and weigh up the benefit of a medication compared to the risk of side effects. The goal is to get the right dose of a medication to treat the symptoms, whilst keeping the side effects as low as possible. This is why it is important to closely follow the instructions given by the healthcare team on how much medication to give, as it may be different for different people. If side effects do happen, you should let the healthcare team know as soon as possible. Side effects vary for different medications, but can include experiences such as drowsiness, muddled thinking or constipation.
It is important to know what the possible side effects of the medications used by a person might be. If you understand them, you can manage the side effects if they happen. You will find more detail on side effects of commonly used medication later on in this booklet. If the person you are caring for is prescribed a medication for you to give by no-needle injection that is not listed in this booklet, the nurse who are training you will add details about any of its potential side effects to your Carer Diary.
We do not expect any problems with the drugs that will be used because they are the same as those used in standard practice and are generally well-tolerated. The drugs used are very commonly given to seriously ill patients to control symptoms and a nurse will give you very detailed training on how to give the no-needle injections.
There may come a time when you are giving the injections when the person you are caring for is very ill and will soon die. This might mean that the time when they die is near to when you have last given them medication. It is very important for you to know that these two things are not related and the medication has not ended their life. The nurse training you to give injections will discuss any worries or concerns you may have about this.