Managing Pain in Palliative Care

Pain is a common symptom in serious and life-limiting illnesses, however, not everyone will experience pain during their illness. Beware! There are thousands of online resources on pain, many of which are not correct, up to date, or are aimed at selling medications and treatments. We have aimed to summarise the most important points and highlight some practical advice.

What is pain?

Pain is different for everyone and is not always due to injury or harm. Pain is a sensation or feeling processed within your brain because of nerve impulses or (bio) chemical events within your body. We all have experienced pain at one time or another and it can vary from niggling, throbbing, stabbing, sharp, or burning. It can be overwhelming, and distressing and lead to depression.

In a life-limiting illness, pain can be caused or made worse by the disease itself, side effects of treatments, medication, or immobility. It can also be made worse by psychological issues such as loneliness, anxiety, depression, and stress.

Despite all of this, the physical and psychological effects of pain can be reduced through both medicinal and complementary therapies.

Managing pain

Clinicians will always refer to managing, controlling or reducing pain – not curing or removing it. This is because eradicating pain completely can be very difficult. As a care recipient this can initially seem pessimistic, however, having honest and open discussions will help your healthcare team plan and manage your pain effectively.

Non-medication based techniques

• Positioning: Changing positions regularly, adjusting pillows or using special cushions can ease some types of pain and can prevent pressure sores.
• Distraction: Talking to friends or family, listening to the radio, playing a game, reading a book out loud or looking at photos can be relaxing and help to distract from the pain. There are also new technologies such as virtual reality that are effectively being used to help with pain management.
• Cold and warmth: Taking warm baths, applying hot water bottles or heat packs to painful areas can reduce discomfort. Applying cold or ice packs to painful and swollen areas can also help.
• Talking therapies: Pain intensity is closely related to mental health. Finding a way to talk through experiences, your pain and worries can have a strong relieving effect. People can find help through friends, family or via providers such as counsellors, psychotherapists, palliative care nurses, spiritual advisors or doulas.
• Loneliness is known to contribute to pain, having people around acts as a distraction, reduces the focus on pain and helps with general mood. There are ‘companion at home’ services that may be available to help with being alone, ask the palliative care or hospice team.
• A nerve stimulation (TENS) machine can be used to pass gentle electric pulses through the painful area to help reduce your discomfort. The healthcare team can advise whether this would be useful for your pain.
• Acupuncture can be helpful in treating types of continuous pain and may be available via your doctor, hospice or palliative care team.
• Other complementary therapies which are used to reduce pain include yoga, massage, reiki, reflexology, mindfulness, aromatherapy, meditation, hypnotherapy and music therapy. These can aid in reducing stress, improving relaxation and promoting sleep.

Medication

The first recommended treatment for pain is usually simple pain-killers (analgesics). These can be very effective and might be all that you need to manage your discomfort. It is very important to follow the prescription schedule as these drugs work best when you have a continuous base level within your bloodstream. If you only take medication when the pain is at its worst (peak pain) it will take longer for it to work and for the discomfort to subside.

There are quite a few options open to healthcare teams when it comes to pain, so do not lose hope if a particular drug doesn’t work too well, there are other possibilities and combinations available via your care team. Do not supplement your pain control with over the counter meds without discussing with your clinical team.

Side effects

All medications can have unwanted effects and it is always worth finding out from your clinician which of these you might experience and how to avoid them, if possible.

It is very important to follow the instructions on how and when to take medications (for example with food) and also what to avoid (such as alcohol) to reduce the risks and seriousness of side effects. If you take a number of different medications, it’s recommended to use a pill organiser to help keep a track of what you have or haven’t taken.

There are a range of possible side effects associated with painkillers and therefore it is also important to record anything new or out of the ordinary when you start taking them – this will also assist the team in adjusting your treatment to best suit you.

Record any abnormal and new sensations such as nausea or dizziness, changes in bowel habits, or new discomfort when you start taking pain medications. Report these to your nurse or doctor and they can discuss whether they are an unwanted effect of the drug and, if so, what to do next. If you get serious side effects such as drowsiness, confusion, blood in your stool or severe constipation contact your medical team ASAP for advice.

If you have intense or increasing pain then you will likely be prescribed some of the stronger medications. These can have more side effects, such as nausea or drowsiness, but can be very effective at controlling pain. Again, it is important to take these drugs as directed and record the effect on your pain and note other unwanted effects. Only with this information can the medical team get your pain control right and adjust (titrate) it correctly to meet your needs.

Pain spikes (breakthrough pain)

Even with round the clock pain control it is possible to have bursts of more intense pain, known as ‘breakthrough pain’.  This can happen when you move around, cough or when your regular medications start to wear off. Your clinical team may prescribe additional medication to take when this occurs and may suggest complementary methods such as distraction.

Injected or infused pain control

In some cases the clinical team may recommend having an occasional injection or a continuous infusion of strong pain medication. If constant strong pain control is required then a device called a syringe driver can be used. This can be set up at home or in a hospice and provides a very effective method of controlling pain. Infused or injected medication can be used at any stage of an illness and are not, as some believe, only used in end of life care.

Addiction and pain medication

A few of the strongest pain medications (opioids) can be addictive over time. If you need these drugs, it is usually more important to use them than to be concerned with potential addiction issues. Your clinical team can talk this through with you and if or when you need will help wean you off this type of medication if that is needed.

Pain emergencies

• If pain is severe and uncontrolled despite medication, this can be an emergency and is always worth discussing with the clinical team.
• New or worsening back pain, especially if accompanied by; changes in bladder and bowel habits, numbness, altered sensation below the waist or leg weakness, should be reported to the clinical team immediately.
• New abdominal pain should be reported to the medical team especially if associated with vomiting, bowel habit changes or blood in the stool.
• Intense pain in the calf muscles can be an indicator of a small clot in the veins (DVT) especially if there is any redness or calf swelling at the site of the pain. Report this immediately if it occurs.
• If you’re unsure what is causing it, how to manage the pain, or unsure if it’s an emergency, always reach out to your medical team.

Summary

Pain can be one of the most challenging aspects of a life-limiting illness and can be quite a complex problem to overcome. Here are the key things to bear in mind:

• Complimentary therapies can work well and should be discussed with your community or hospice care team.
• Pain medications (analgesics) are not something to be afraid of, and can work incredibly well on their own or in combination with other treatments.
• Remember to take medications regularly, as prescribed, to get an even ‘round the clock’ baseline of pain control.
• Keep a record of when and where pain occurs and what helps, to assist the medical team treat it. New intense pains should be highlighted early to a professional.
• Use a pill organiser and, or a chart to keep a track of what medications you have taken and when.
• Pain control can have side effects, some of which are normal and acceptable, others will be unwanted. It is important to keep your palliative care team up to date so they can adjust your treatment accordingly.

In conclusion, pain can be worrying and distressing, there are different types of pain and an individual’s experience of it is unique. Remember, there are a lot of options and combinations open to you to help with pain, which can be medicinal and complementary. With this in mind you must ask questions, have honest and open discussions with your palliative care team in order for them to customise and optimise your pain control.