Managing pain at the end of life

If you have a life-limiting illness, your doctor will give you information and talk to you about your pain and how to manage it, including the causes of your pain and how it affects you. 

Palliative Care, an educational series from HammondCare

The approach to end of life, for whatever reason, can be a daunting time for everyone involved. However, many people - patients, their carers and family alike - are often surprised about the valuable and positive role that palliative care can play in improving quality of life and making this time more manageable.

Palliative care assists to improve people’s quality of life during the course of a progressive life-limiting illness. This care isn’t just about pain relief medicine. It is more holistic. It also addresses the psychological and spiritual aspects of care, providing support to help patients live as actively as possible.

Being well informed about palliative care can make this journey more manageable and help reduce the associated fears and concerns. That is why HammondCare is launching a series of articles to guide people on how palliative care can improve the quality of life for patients, their carers, and families.

A new topic will be posted each month and we hope you find them useful in your own journey.

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Managing Pain at the End of Life

If you have a life-limiting illness, your doctor will give you information and talk to you about your pain and how to manage it, including: 

  • Causes of your pain
  • How your pain affects you (e.g. onset, timing)
  • What treatment works and what doesn’t (including medicines and non-drug measures like massage, heat, cold etc)
  • Effect of medicines including breakthrough analgesia (e.g. onset and duration of effect; when to take them)
  • Side-effects of medicines and how to prevent or manage them
  • Any safety concerns (e.g. mixing with alcohol, driving)
  • Ways to ensure you have adequate access and supply to prescribed drugs
  • How to work with your doctor and nurse and achieve the best pain control possible (e.g. the importance of reporting rather than concealing pain, side-effects and other concerns about medication)
  • Common attitudes and beliefs that may prevent people with cancer receiving effective pain control (e.g. fears that opioids are addictive and used only at the end of life, and that patients will develop tolerance overtime requiring dose escalation)
  • When to seek help (e.g. if vomiting and unable to keep down fluids for one day, bowels not open for 3 days, new pain, change in pain or pain not relieved by medication, difficulty arousing the patient from sleep easily during the daytime, confusion, difficulty accessing the medications).

If you need more information on any of these matters, do ask your doctor.

Developing a cancer pain plan

An important step in managing your pain is developing a cancer pain plan with your caregivers, and staying on top of the pain.

The first step in developing a plan is talking with your doctor and/or nurse about your pain. You need to be able to describe your pain to your family or friends too. Ask them to help you talk to your doctor and nurse, especially if you are too tired or in too much pain to talk to them yourself.

One thing that often helps considerably is to be able to use a pain rating scale.

Using a pain scale is a helpful way to describe how much pain you’re feeling. Try to give each pain a score on a scale of 0 to 10. If you have no pain, give it a 0. As the numbers get higher, they stand for pain that’s getting worse. A 10 means the worst pain you can imagine. For instance, you could say, “at the moment my pain is a 7 on a scale of 0 to 10.

You can use the rating scale to describe:

  • How bad your pain is at its worst 
  • What your pain is like most of the time
  • How bad your pain is at its best
  • How your pain changes with treatment 

Tell your doctor/nurse and your family or friends:

  • Where you feel pain
  • What it feels like (for instance, sharp, dull, throbbing, gnawing, burning, shooting, steady)
  • How strong the pain is (using the 0 to 10 scale)
  • How long it lasts
  • What eases the pain
  • What makes the pain worse
  • How the pain affects your daily life
  • What medicines you are taking for the pain and how much relief you get from them
Making the most of your pain control plan

To help make sure your pain control plan works well:

  • If you’re taking pain medicine on a regular basis (around the clock) to help control pain that doesn’t go away, take it when it’s time to take it – even if you’re not having pain. 
  • Don’t miss out doses of your scheduled medicine. It is harder to ‘catch up’ if you lose control of the pain.
  • Use your short-acting breakthrough pain medicine as instructed. Don’t wait for the pain to get worse – if you do, it can be harder to control.
  • Be sure only one doctor prescribes your pain medicine. If another doctor changes your medicine, the two doctors should discuss your treatment with each other. 
  • Don’t run out of pain medicine. Remember that prescriptions are needed for almost all pain medicines – usually they can’t be ordered over the phone and chemists don’t always have them in stock. It can take a few days to get the medicine, so give yourself time for delays. 
  • Store pain medicines safely away from children, pets, and others who might take them. 
  • Never take someone else’s medicine. Medicines that helped a friend or relative may not be right for you.
  • Do not use old pain medicine or medicine left over from other problems. Drugs that worked for you in the past may not be right for you now.
Keep a record of your pain

You may find it helpful to keep a record or a diary to track details about your pain and what works to ease it. You can share this record with those caring for you. This will help them work out what method of pain control works best for you.

Pain control isn’t just about medication. Non-drug treatments may be used to treat pain along with pain medicines. They might also be used alone for mild pain or discomfort. Some people find they can take a lower dose of pain medicine when they also use non-medical treatments. You may need the help of other health professionals – social workers, physiotherapists, occupational therapists, psychologists, or others – to learn to use these techniques. Each of the professionals in the team caring for you will have something to add. Your family and friends can also help.

If you have benefited from this information and would like to share it with others, then please do – we want more people to feel comfortable facing the issue of palliative care.

For further information on HammondCare’s Palliative Care services, please contact us on 1800 826 166.