The following content is from A Caregiver's Guide: A Handbook about End-of-Life Care. It has been reproduced here with permission from The Military and Hospitaller Order of Saint Lazarus of Jerusalem and the Canadian Hospice Palliative Care Association.
Assessing the Pain
When someone complains of physical pain, it is usually at a particular location in the body. However, a general feeling of not being well is sometimes experienced and described as pain or discomfort.
What you need to know
To help someone in pain, it is important to assess the pain. It is also important to know that people explain and express pain in different ways. Pain can be more than just physical. It can also be emotional, social, spiritual, and many other different elements that are often described as “total pain.”
Points to Remember:
- Assessing pain is an ongoing process. You need to ask and know as much as you can about the person’s pain at any given time.
- The feeling of pain may be worse if the person is having other physical symptoms such as nausea.
- Feelings such as worry, fear, boredom and loneliness may make the experience of pain worse. It is better to first explore and attend to these particular needs, and not just automatically increase pain medications.
- Understanding more about the pain will help you to provide comfort and let you know if the help you are giving is working.
How you can offer comfort and care
No one is more expert about the pain than the person who is feeling it. If the person you are caring for complains of pain, believe it. Even if there is no complaint, you need to be observant. Ask about any signs of discomfort you see.
The experience of pain is different for each person. After asking the following questions, you can provide the doctor or home care nurse with information that can help address and take care of the pain. As there may be more than one physical pain, ask the same questions in relation to each pain.
- Where is the pain? Is it one particular place or is it all over?
- Can you point to where the pain is? Is it deep inside or on the surface? Is there more than one type of pain?”
- When did the pain begin – an hour ago, yesterday, or months ago?
- How often does the pain occur?
- How long does the pain last – minutes, hours? Does it come and go, or is it constant?
- What does the pain feel like? Ask the person to describe it. Provide examples of words to use – stabbing, burning, aching, throbbing, piercing.
- How much does it hurt? It often helps to ask the person to rate their pain on a scale from zero to 10, where zero is no pain and 10 is the worst yet.
- What could have started the pain – was it movement, eating, pressure, the way the person was lying or sitting?
- What makes the pain go away – rest, massage, movement, meditation, distraction, medication?
- To what degree is the pain limiting normal activities?
- What other symptoms are present?
- The ongoing use of a pain rating scale can give valuable information about the pain experience over time. A rating scale used every day can help evaluate pain. This information can be put on a graph. From the graphed results, your home care nurse can help you decide if you should contact the doctor for a change of medication. (see Appendix IV Symptom Assessment Scale, page 152), and the Wong-Baker Pain Rating Scale, below).
Managing Pain with Medications
Someone who has constant pain needs regular pain medication to control it.
What you need to know
- The goal of pain management is to keep someone alert, with the pain under control as much as possible. It takes time and testing to arrive at the exact combination of medications that will keep a person feeling more comfortable. You can shorten this process by regularly recording positive or negative effects of a new medication and talking to the home care nurse and doctor about the results.
- A record of the pain and of regular scheduled pain medication and breakthrough doses will help the doctor adjust the dose (see Pain, page 70).
Ask for help if:
- A new pain occurs - different from the person’s usual pain.
- Pain continues after you have given three breakthrough doses in 24 hours. (See information on ‘breakthrough’ in next section, Managing Pain with Medications)
- There is a rapid increase in the intensity of the pain.
- There is sudden acute pain.
- You notice sudden confusion (see Confusion, page 76).
How you can offer comfort and care
Some basic guidelines apply to the use of any pain relief medication.
- When pain is constant, give the medication on schedule even if there is no pain at the time. This helps make sure the pain stays away. Once the pain returns, it becomes more difficult to control. (Using a timer can help you keep track of the schedule for pain medication.)
- Plan to give physical care after a medication has started to work in order to reduce discomfort. Most pain medications take effect within approximately 30-40 minutes. This is useful to know, especially if you must change a dressing or move a person around more in bed.
- When taken regularly, pain medication is just as effective taken by mouth as by injection. Alternative routes such as injections, suppositories or patches are considered when the person cannot take or tolerate medication by mouth.
Things to remember about opioid pain medicines
- Short-acting opioids require a dose every three to four hours to keep a person in constant pain more comfortable. If the person is not on long-acting opioids, set an alarm to wake yourself up for night time doses. Otherwise the person will wake up in pain. It is then more difficult to catch up to control the pain.
- Keep track of pain relief. If the person has been on a stable dose of pain medication for three to four days, the doctor can consider prescribing a longer acting opioid. Some of these long acting opioids last 12 hours or 24 hours. One is available as a patch that lasts for three days. A person’s pain must first be under control on short acting opioids for the long acting form to work well.
- Sometimes pain will ‘breakthrough’ even when it should be controlled by medication. For example, a person may feel mild or even severe pain a few hours before the next scheduled dose. When this happens, a ‘breakthrough’ dose of pain medication is often ordered. Guidelines for the frequency of use of breakthrough medication vary. Ask your home care nurse for the suggested breakthrough frequency guideline in your area. Definitely tell your doctor and home care nurse if breakthrough medication, given at hourly intervals three times or more over 24 hours, does not relieve the pain. Write it down to keep track of every breakthrough medication the person takes, and why. This helps the doctor adjust the regular dose. (see Appendix V Breakthrough Medication Chart, page 153).
- Remember that opioids are potent medications and should be kept safely out of sight and out of reach of children and others. As with any other medication, do not talk in public about the fact that you have these drugs in your home. Otherwise, there is a risk someone may try to steal them.
- Have at least a one-week supply of opioid medications on hand.
- Ask your home care nurse about how to dispose of unused opioids.
Things to remember about non-opioid pain medications
You can take some steps to make pain relief more effective and reduce unwanted effects.
- Take medications as directed on the packaging or by your health care provider.
- Unless you are told otherwise, offer the medication with food to lessen stomach upset.
- Acetaminophen (Tylenol™) can be taken on an empty stomach to improve the way it is absorbed.
- Watch for signs of bleeding or bruising, as some of these medications can affect the blood’s clotting.
Possible Side Effects Or Complications of Opioids
When a new opioid medication is given for the first time, it may initially make that person extra sleepy for a few days. Remember that the person may also be tired from exhaustion and lack of sleep due to pain, and now needs to catch up on sleep.
Let the person catnap whenever desired. Just be sure you are able to rouse the person. In the final days or hours of their illness, this may not be possible. Talk more with your health team to get advice.
Nausea and vomiting
When first used, strong opioids can cause queasiness or even make a person throw up. These problems usually disappear in a few days.
- Nausea and vomiting can also be an effect of other medications the person is taking or a result of the illness itself.
- Encourage resting in bed for the first hour or so after taking pain medication.
- Remind the person that pain can also cause nausea and vomiting. If this is the case, the pain medication may also help relieve the nausea and vomiting.
- Ask the home care nurse and doctor about an anti-nausea medication to be taken for three or four days when starting a new opioid or having an opioid dose increase (see Nausea and Vomiting, page 94). (see
Nausea and Vomiting ).
Opioids slow down the gut so constipation can be an ongoing problem for as long as the person is taking these medications.
- Anyone taking opioids should also be taking a bowel stimulant and a laxative to prevent constipation (see Constipation ).
- Tell your home care nurse immediately if there is any change in regular bowel routine.
A person who is taking pain medications, especially opioids, may feel a little confused. Some people may even have hallucinations, although this is an unusual response. If confusion occurs, tell your home care nurse. Lower doses of the opioid medication or changing to another opioid type may be recommended. In addition, other aspects of the disease may be causing the confusion and will need to be assessed at the same time.
This is a twitching or spasm of the muscles that the person cannot control.
- Myoclonus is a similar feeling to the one that can occur when you are just about asleep and suddenly jump awake.
- It is not an unusual response to some medications. The twitching is not related at all to a convulsion.
- Tell your home care nurse if myoclonus is happening.
Addiction Versus Physical Dependence
There is a difference between addiction and physical dependence. Physical dependence is the body’s need to relieve constant physical pain by taking medication regularly to maintain the effect. When the medication is stopped, the body will experience symptoms of withdrawal. Addiction is what some people refer to as psychological dependence – there is no physical need to feel a ‘high’ from the medication or unwillingness to be without the sensation it gives.
One of the greatest myths about pain management is that people who are taking medications for pain become addicted to them. People do not become addicted to pain medications that are needed for pain and used correctly.
Research has shown that less than one per cent of hospitalized patients receiving opioids for pain will become addicted.
Many people taking pain medication will usually need a higher dose over time because the body develops a tolerance for it. The dose of an opioid can be increased as much as necessary by the doctor in order to relieve pain.
All the food, water or medications that you take into your body are either useable or waste. Your liver does the job of breaking the parts down and your lungs, bowels and kidneys get rid of the waste. Someone who is on high doses or long term opioid pain relief, or has kidney problems, may have wastes from the medication build up in the body. This is called opioid toxicity.
What you should know
With opioid toxicity, the person has very marked behaviour changes. If your loved one is using opioids for pain relief, be aware of the signs that indicate problems.
- Delirium or confusion may be seen in the form of:
- bad dreams, nightmares.
- decreased level of consciousness, drowsiness.
- confusion about time and place.
- hallucinations (seeing, feeling or hearing things that are not real).
- moaning and rambling speech.
- reduced concentration.
- short term memory difficulty.
- sleeping during the day and waking during the night.
- jerking or seizure-like movements of limbs or face muscles.
- pain when touched in a way not expected to cause pain.
- If you notice any of these changes, tell your home care nurse.
- A member of your health care team may ask questions to check the person’s memory and recognition, so that early signs of this complication can be identified.
What may be done
- If the person is able to tolerate increased fluid intake or fluid supplementation, the goal would be to increase hydration by mouth so that the kidneys can flush out the toxins. If drinking more fluids is not possible, the team may consider using artificial fluids (through a vein or skin) to flush them out.
- The doctor may switch opioids. Different opioids make different wastes. By switching from one kind to another, the body can continue to get rid of the wastes.
- If the kidneys are not working properly, the doctor may lower the dose of opioid.
- The doctor may order a medication to control hallucinations, nightmares or agitation until the body gets rid of the wastes.
Other Ways to Manage Pain Relief
Pain control can sometimes be successfully managed using other methods.
TENS (Transcutaneous Nerve Stimulation)
This technique involves using a small electronic device using electrode placements to send weak electric pulses through the skin to the underlying nerves. It is thought that the mild electrical activity helps to relieve pain. Your home care nurse can tell you if it might help and if it is available in your community.
- The placing of the electrodes depends on the area and type of pain. A physiotherapist or other member of the health care team who is trained in TENS can teach you where to put the electrodes and how to use the TENS machine.
- The electrodes should not be placed inside an area where radiation is presently being given. As well, avoid these areas for 10 to 14 days after radiation treatment is completed.
- TENS should not be used over sinuses, eyes and ears.
- Do not use TENS on anyone with a pacemaker.
- TENS should not be used near the heart.
- TENS should not be placed on sore, swollen, infected or unhealthy skin.
Other forms of non-medication pain relief
Some complementary therapies can help distract from pain and may offer pain relief (see Complementary Care, page 101).
- For nerve pain, a local anesthetic can be injected around nerves to block pain that is occurring in one area. The results may be temporary or long lasting.
- Acupuncture is an ancient Chinese treatment that uses sterile needles placed at specific places in the body to relieve pain.
- Radiation can be used to shrink tumours to reduce a person’s pain and other symptoms.