Pain: How to Recognize It and How to Help?
Pain is an individual experience. People talk about it in different ways and experience it differently. No one is more of an expert about the pain than the person who is feeling it. If the person you are caring for complains of pain, believe it. It can also be emotional, social, spiritual, and many other different elements that are often described as “total pain.”
When caring for a person who is seriously ill, it is important to remember that pain:
- is enough to make them uncomfortable;
- is as bad as the person says it is and not what others think it should be;
- occurs where the person says it occurs;
- may be constant, or come and go;
- can affect moods and can be affected by thoughts or emotions.
Understanding more about the pain will help you to provide comfort and let you know if the help you are giving is working.
Effective pain and symptom management can greatly improve a person’s quality of life. As a caregiver, you can play a key role in recognizing signs of pain and in communicating what is observed to the visiting nurse or to a physician. Caregivers can use a range of techniques to help manage pain.
What is pain?
Pain is a physical sensation relayed to the brain through a nervous system. Pain is a very subjective symptom that can make it difficult to determine the exact cause of the pain. That means that two people can experience the same type of pain but react to it entirely differently. For example, the same headache can drive one person to bed and another person may continue their day as normal. Because of this subjectivity, it is very important to listen to the person as they are the expert in their own pain.
What factors affect how a person responds to pain?
- Cultural background
- Previous experiences
- Meaning of pain to the person
- Worry, fear, boredom, loneliness, anxiety
- How much rest and sleep a person is getting
- The number of sensory receptors in the brain and how the brain processes pain
What pain do people feel at end of life?
People who are nearing end of life may experience distinct types of pain:
- Acute pain which is intense, localized, sharp and which usually ends or resolves itself quickly. It can be compared to the type of pain someone feels after surgery.
- Chronic or persistent pain is slow and continuous and does not end quickly. It can be compared to a dull ache. Often this pain is associated with arthritis and cancer.
- Breakthrough pain refers to pain that “breaks through” or re-emerges before the next round of pain medication is due or breaks through the pain medication that has already been taken.
- Referred pain is perceived at a location other than the site where the pain is actually occurring such as the pain a person feels in their neck, shoulders and back when they are having a heart attack.
- Radiating pain is a sharp, recurring pain shooting or radiating through a part of the body which is caused by pressure on a nerve or damage to a disc.
Different types of pain are treated differently. As a caregiver, you can help a nurse or doctor understand which type of pain is being experienced so the physician can treat it properly.
How can a caregiver recognize pain?
It is very important that the caregiver observe the person very carefully. As people near end-of-life their ability to communicate lessens so observation is critical at that time.
Signs of acute pain: moaning, grimacing, shielding, protecting or massaging the site of the pain
Signs of chronic pain: harder to observe as the person may show few signs of distress other than looking exhausted or depressed
What questions should you ask?
As the caregiver, you can accurately relay information to the primary care physician about the pain. Ask these questions and use the answers to explain the pain to the physician. The pain medications can then be adjusted based on your observations of the person that you are caring for and their answers to these questions.
- Are you experiencing pain?
- When did it start?
- Where do you feel it? In one place? All over?
- What does the pain feel like? Is the pain sharp or dull, constant or shooting? On a scale from 1 to 10 with 10 being the worst pain you have experienced, how intense is the pain?
- What makes it better? Worse?
- Do you feel nauseous or dizzy from the pain?
- What can I do to help?
- What medications are you taking for the pain?
What symptoms show the level of pain is changing?
Pain: Grimacing, guarding against maneuvers
Tiredness: Increased amount of time resting; disturbed sleep
Drowsiness: Decreased level of alertness
Nausea: Retching or vomiting
Appetite: Quantity of food intake decreases
Shortness of Breath: Increased respiratory effort that appears to be causing the person distress. Note: may be caused by something other than pain
Depression: Tearfulness, flat affect, withdrawal from conversation, irritability, decreased concentration or memory
Anxiety: Agitation, flushing, restlessness, sweating, increased heart rate
Well-Being: How the person appears overall changes
General Body Tension: Clenched hands and shoulders, constant fidgeting, biting fingernails or lip, strained or high-pitched voice
How to Control Pain
Pain management should be part of the plan of care. Any or all of the following techniques might be part of that plan:
- Opioid and non-opioid prescription drugs as well as non-prescription drugs such as Acetaminophen, anti-inflammatories (However, these are not recommended for long-term use in elderly people or people on blood thinners or with blood clotting problems as it can lead to bleeds.) Ensure the person receives their pain meds at their appropriate time. Be diligent about this! Wait about 30-45 minutes (or for one hour in the case of opioids) for medications to take their full effect. Remember that opioids are potent medication and should be kept safely 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. Taking medications by mouth is best for as long as possible; swallowing more water may help. Some pills can be mixed in applesauce or pudding. Some pills must not be crushed. It is important to ask your Community Care Team before doing so. When a person is having difficulty swallowing, or can no longer swallow, medication can come in other forms such as: liquids, suppositories or injections given under the skin. A pump may be used to prevent repeated injections.
- Relaxation techniques such as deep breathing, gentle exercises
- Imagery, visualization, meditation
- Skin stimulation through massage, touch therapy, warm baths, ice
- Chemotherapy or radiation to shrink the tumour causing the pain
- Nerve blocks, acupuncture, neurosurgery
- Use pillows to promote good body alignment
- Use appropriate turning and lifting
- Use touch to provide comfort
- Provide a calm environment
- Ensure temperature comfort. Provide warm blankets or open a window if desired.
Many people have strong thoughts and feelings about pain medications. Some people feel that:
“Taking pills isn’t natural.” For a person with a serious disease medication may make the difference between being in pain and doing the things they want to do.
“They will get addicted.” For a person with severe pain, the medication takes care of the pain. If the person has radiation or some special treatment that makes the pain go away, the medication can be reduced gradually and sometimes stopped.
“They will feel high.” Only if they take the medicine for reasons other than pain.
“The medication will not work later on when the pain is very bad.” Now we know you can gradually increase the dose until there is pain relief. We now know we can use much higher doses.
“They will be sleepy.” This may happen at first, especially if the person hasn’t slept for a few days. They will adjust. If sleepiness continues, let the Community Care Team know so they can make changes to the medications.
Possible Side Effects of Opioids
Discuss what side effects to expect with your Community Care Team and what to do if they happen. Always report these to the Community Care Team as quickly as possible so they can manage them.
People receiving narcotic pain medication will have difficulty with bowel functions, especially constipation. People need to continue using the right dose of pain medication so that they can remain relatively pain free and alert, but they also need help controlling any side effects of that medication. A laxative should always be ordered and given regularly. Tell your Community Care Team if there’s any change in regular bowel habits.
Nausea and Vomiting
When first started, opioids can cause nausea and even vomiting but this usually disappears in a few days. Ask your Community Care Team about anti-nausea medication if necessary.
When a new opioid medication is first given it may make the person extra sleepy. This should resolve in a few days.
Preparing for the Journey
Remember that the person who is ill may be needing to catch up on sleep and therefore appears drowsier. Make sure you are able to rouse the person. Ask the Community Care Team for advice.
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 Community Care Team.
It is not related to a convulsion. Tell your Community Care Team if this is happening.
Difficulty Passing Water
This may cause the person to be restless and often is confused with increased pain. Although it does not happen often, it is important to be aware. It may be necessary to insert a temporary catheter to relieve the bladder periodically.
Addiction, Physical Dependence, and Tolerance
There is a difference between physical dependence, addiction, and tolerance:
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 in either case, the body will experience symptoms of withdrawal. People do not become addicted to pain medications that are needed for pain and used correctly.
Addiction is what happens when there is no physical need for the medication and the person continues to take the medication for the feeling it gives them.
Tolerance is when people take pain medication on a regular basis and usually need a higher dose over time as 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
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. The signs that indicate a problem with opioid toxicity include marked behaviour changes such as: delirium or confusion, agitation, hallucinations, restlessness, drowsiness, jerking, pain when touched in a certain way that is not expected.
If any of these changes are noticed, contact your Community Care Team immediately. All of these side effects are signs that the medication(s) may need adjusting. Your Community Care Team can help with this. Because a number of medications may be used, it is important to keep an updated list of the medications.
Myths about Pain Management
Myth: Pain meds, especially opioids, cause addiction.
Reality: Addiction is very uncommon in patients who require long-term opioid therapy for pain from an incurable illness.
Myth: People quickly become tolerant of pain medications so after a while they don’t help
Reality: Significant tolerance is uncommon and the need for increasing doses often relates to disease progression not lack of tolerance.
Myth: Opioid analgesia (not to be confused with Tylenol etc.) cause hallucinations
Reality: When people are first put on opioids they may experience hallucinations but this side effect only lasts 24-72 hrs. and then disappears. Opioid doses should always start low and be slowly increased.
1. Read this scenario
Mrs. V. is a 70 year old female recently diagnosed with Stage 4 breast cancer. She requires help with meal preparation and personal care. During your visit today, Mrs. V. seems quieter than usual. She looks unhappy but she says that everything is fine. You notice her grimacing when she showers and whenever you move her right arm when you are helping her get dressed. You ask her if she is in pain but she says little. Mrs. V. is seeing the doctor tomorrow afternoon.
2. How could a pain chart recording when the pain began, what Mrs. V was doing when the pain struck, how long it lasted, where it was, what it felt like, what relief was provided… be used to help?
What else could you do to help Mrs. V. manage the pain?
Review again the list of techniques listed above.
Use these additional resources to learn more about the topic of pain and how to help manage it.
People nearing end of life should receive ongoing pain assessments usually conducted by nurses and physicians. There are many tools that these health care professionals might use to assess a person’s pain. Here are some examples of the tools that they might use.
Edmonton Symptom Assessment System
How to Manage Your Pain and a Pain Diary – Cancer Care Ontario
Pain Relief-Canadian Cancer Society