Special considerations for medicines in palliative care
The more health issues you or the person you care for have, the more medicines likely to be taken. Understanding what can affect which medicines you are prescribed in palliative care is important. So is knowing where you can find more information to help you manage your medications.
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Access to medicines
There are three ways that medicines might be obtained:
- with a prescription from a health professional
- over the counter from chemists, health shops and supermarkets
- from homoeopaths, naturopaths and herbalists.
Taking your medicines
Medicines may come in many shapes or forms. You could take tablets, liquids, capsules, inhalers or patches. You may also use suppositories or have injections. Medicines might be taken in different ways or at different times of the day or night. As the illness progresses you may have to change how some medicines are taken. They could be taken for different reasons. Sometimes you or the person you care for may have more than one medicine to treat the same problem.
These medicines may be given regularly to stop a problem such as pain or nausea. Others might be prescribed on a 'just in case' basis. These can be helpful as symptoms sometimes change quickly. In palliative care there are some special considerations for how medicines are managed.
Breakthrough symptoms occur for many reasons in people with a life-limiting illness. This includes symptoms like pain, nausea, breathlessness, and anxiety. Sometimes these symptoms ‘break through’ the stable control of symptoms usually experienced. Your prescriber may prescribe additional medicines to be used as a ‘rescue dose’ in case this happens. It is important that you follow the advice given to you about treating breakthrough symptoms. Letting your care team know how much and how often breakthrough medicine is needed helps with management of your symptoms. Ask your team for help to keep track.
The Pharmaceutical Benefits Scheme (PBS) subsidises medicines which are proven to work. This means that you can get them at a lower cost from your local pharmacy. The government decides which medicines will be subsidised. It also decides how many repeats you get and if your GP needs to get special permission to prescribe it.
Some medicines have restricted access. This could be because they are expensive. It could also be because they are at higher risk of causing problems. These medicines need to be written on an ‘authority script’. This means that the doctor gets authorisation to prescribe them. This then ensures the medication remains affordable.
Your palliative care medicines may be prescribed 'off license'. This means they are used differently and not exactly as the PBS directs. You will have to pay more for these medicines. This could be through your local pharmacy. You could also arrange an ongoing supply through the hospital associated with your palliative care service.
You may need to get a lot of prescriptions filled, and this can become costly. If you or your family use a lot of medicines, the PBS Safety Net helps with the costs. Once you have reached a certain limit, you can receive medicines more cheaply for the rest of the year.
Sometimes in palliative care taking medications by mouth or other routes such as skin patches is no longer possible or preferred. In this case some medications can be delivered using a syringe driver. These are small portable (usually battery-operated) devices used to administer medication including breakthrough medications. If you need help with managing use of a syringe driver ask your care team about the caring@home program and how their resources could help. They also have resources for carers in different languages.
Finding more information
You can find out about your medicines in many ways.
- Your doctor or pharmacist can give you information about your medicines.
- The National Prescribing Service has a ‘Medicines Line’. Or you can read about your medicines online.
- Your local hospital may have a medicines information service. Call your local hospital and ask to speak with the pharmacy department.
- Drug companies are required to tell you about the medicine you are taking in a Consumer Medicines Information (CMI) leaflet. It aims to give you information that is accurate, fair and easy to understand. This is often inside the medicine box or packaging.
- Your doctor or pharmacist may suggest a Home Medicines Review (HMR). This can be helpful to look at the medicines that you are taking. Your pharmacist can do this at home for you, or perhaps at your doctor’s surgery. You can ask your doctor or pharmacist how this can be arranged.
Practical ways to manage medicines
Managing medicines is important, but it can be difficult. This may apply to yourself or someone that you are caring for.
You can easily forget to give or to take medicines, or even take them twice. You will find it easier if you use a medicines list to record this information. It is important that you take this list to your medical appointments. You should also ask your doctor to update this for you when your medicines are changed.
Sometimes, your doctor or pharmacist may suggest that you use a dose administration aid. This is a way to organise medicines so that they are easier to manage. Your pharmacist may be able to fill this regularly for you. There may be a cost for this service.
- Keep a list of what medicines you have and why you or the person you are caring for are taking them.
- Take your medicines lists to appointments. Either you or your doctor should keep this up-to-date. It can get confusing when some medicines are stopped and others are started.
- You may find that organising these different scripts takes time. Make sure you have enough medicines to last over weekends and public holidays. It is more difficult to get a repeat prescription at these times. You may want to use a diary or calendar note to prompt you when a new prescription is required.
- It may be helpful to use the same local pharmacy for your medicines. They will be able to stock the medicines that you are likely to need.
- You may have a lot of tablets, or some very large ones. This can occasionally make it difficult to swallow them. You may be able to get some or all of them prescribed in another way (such as an oral liquid or injection).
- Make sure that all medicines are kept safe. Store them properly according to the instructions and out of reach of young children and family pets.
- You must not keep medicines that you are not using or that are out of date. Take them to your pharmacy for correct disposal.
- You or the person you care for may be given medicines on discharge from hospital. These may, or may not, be the same as what was being taken at home. As this could get confusing, it is important that you clarify any changes with your doctor or pharmacist.
All medicines can cause adverse effects. This is an unintended effect of a medicine. You will need to watch for adverse effects and monitor what is happening. This could be anything from a rash, to a wheeze, or diarrhoea.
You or the person that you are caring for may only experience some, or none of these effects. Discuss all adverse effects with your doctor or pharmacist. some may just be temporary, while others may be a sign of a bigger issue.
Page updated 30 March 2023
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