How To Recognize Non-verbal Signs of Pain at End of Life

As you support someone through their final journey, it’s important to recognize and address any pain they may experience. Left untreated, pain can severely damage comfort, mobility, energy level, mood, and overall quality of life.

By Laura Herman, Dementia and Eldercare Professional

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People can’t always say they’re hurting, especially as the end of life nears.

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As you support someone through their final journey, it’s important to recognize and address any pain they may experience. Left untreated, pain can severely damage comfort, mobility, energy level, mood, and overall quality of life.

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If your loved one can’t use words to tell you they’re hurting, you can learn to watch for non-verbal signs of pain – let’s look at how to do so.

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Why Would Someone Be Unable to Say They Are in Pain?

People may have trouble communicating their pain in words for various reasons, such as:

End-of-life transition. During the last few days or weeks of life, the body systems shut down dramatically, and many people lack the energy or ability to speak.
Sleepiness or sedation. Sleepiness, sedation, or unconsciousness can make verbal communication challenging, if not impossible.
Dementia or confusion. If your loved one is confused they might not be able to even recognize that they’re in pain, let alone communicate it. They may say “no” when asked if they’re hurting. However, pain can still affect their mood, energy level, comfort, or behavior even if they don’t realize it. Once the pain is properly treated, nonverbal signs of pain – like restlessness, irritability, or combative behavior – can subside.

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What Are Some Non-Verbal Signs of Pain?

Nonverbal pain signs often include things we are all familiar with: facial expressions, body language, vocalizations, and behavior. However, when loved ones are unable to say the words “this hurts,” or “I am in pain,” it is crucial to recognize these signs.

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Face:

Scowling, frowning
Grimacing, furrowed brow
Eyes squeezed shut tightly
Rapid blinking
Frightened expression

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Body:

Limping
Clenched jaws or fists
Tense, stiff, or rigid muscles
Unwilling or unable to move
Restless or writhing around in bed
Holding or guarding an area of the body
Pacing, rocking or fidgeting, unable to keep still
Legs and arms held tight or pulled into fetal position

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Voice / Behavior:

Crying, whimpering
Moaning, groaning, heavy sighing
Yelling, screaming
Swearing, muttering, or complaining
Resistant to care or refusing help when it’s needed
Striking out
Combative behavior such as hitting, pushing or kicking
Withdrawn or unusually quiet
Increased confusion, anxiety or irritability

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How to Tell Where It Hurts

Many non-verbal signs of pain provide clues that your loved one’s hurting but don’t tell you where. If you don’t know where the pain is located, try the following:

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Watch to see if they’re rubbing, holding, or protecting a particular part of their body, which can indicate where it hurts.
Are they limping? Their foot, leg, or hip is probably in pain.
Do they wince, pull away, or react when you touch a certain area? You can bet that spot is uncomfortable.
Look for anything that looks like it “should” hurt, such as swollen, disfigured joints or red, rashy, broken skin. It is likely to be causing them pain..
Consider any past or current painful conditions.

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Keep in mind that pain can:

Affect a specific area of the body (localized)
Be spread throughout the body (diffuse)
Be new or recent (acute)
Be long-term (chronic)
Be caused by multiple sources at once

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If You Can’t Tell Where It Hurts

You might not be able to figure out exactly what hurts, but if you suspect pain, make sure to treat it accordingly. If the signs improve, pain was probably the problem. If your actions do not solve the issue, then it might be something else. Likewise, the pain might be so severe it needs stronger treatment. Talk to your hospice nurse for advice.

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Pain Scales

Most healthcare professionals use a scale of 1-10 to rate the intensity of pain, with 1 being barely noticeable and 10 being the worst pain imaginable.

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Mild

1- Barely noticeable discomfort

2- Mild pain

3- Uncomfortable, but able to distract or ignore it

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Moderate

4- Significant pain that does not interfere with daily life

5- Significant pain that interferes with daily life to some extent

6- Significant pain that interferes with many daily activities

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Severe

7- Severe, distressing pain that interferes with most activities

8- Severe, distressing pain that’s so bad even talking or listening may be a challenge

9- Extremely severe pain, may be very difficult to move, breathe or think

10- Completely debilitating pain, may require emergency attention

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If your loved one can’t tell you how intense their pain is, there are different scales that can help you rate it. One of the easiest and most effective is the PAINAD (Pain Assessment in Advanced Dementia). Developed to identify non-verbal signs of pain in dementia, this simple scale relies on caregiver observations. It works just as well for non-verbal individuals without dementia.

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Share Your Observations

Pay attention to the pain symptoms you see, as well as which treatments help and which don’t.

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Keep a written record for the hospice or health care team, noting:

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Pain location, if known
Intensity on a scale of one to 10
Type of pain scale used (or self-reported)
What triggered the pain, if known
Which treatments were tried? How much pain persisted one hour after treatment?

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The Difference Between Discomfort and Pain

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Is it an ache, pain, or discomfort? Stiffness or soreness? Does it matter? Yes and no.

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Sometimes the word is just a word. Any kind of pain can adversely affect energy, mood, mobility, and quality of life. So regardless of what you call it, treating it is important.

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Moreover, certain people – often older men, although anyone can and will do this as well – subconsciously think that pain is a “weakness” they won’t allow themselves to feel. They may not admit they’re hurting, but they may acknowledge that their knee is “acting up” or their back is “stiff.” Use whatever word makes them most at ease.

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On the other hand, different types of pain respond better to different treatments. In these cases, accurate descriptions can help when communicating with the health care team.

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The Difference Between Aches and Pains

Aches are typically dull pain at a mild to moderate level.
Throbbing pain can be recurrent aching pain that pounds or pulses.
Sharp or shooting pains are sudden and intense spikes of localized pain.

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Discomfort vs. Pain

“Discomfort” may include mild aches or pains as well as any number of other annoying or uneasy sensations, including stiffness, restlessness, shortness of breath, chills, fevers, and more.

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Is your loved one experiencing uncomfortable symptoms? Learn how to ease end-of-life discomfort.

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A hospice team knows how to quiet pain and keep patients comfortable. Don’t hesitate to reach out with questions about any non-verbal signs of pain and discomfort you notice in your loved one.

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What Non-Verbal Cues Require Immediate or Urgent Medical Attention?

One of the best parts of being on hospice is the ability to receive 24-hour support. The team can help you recognize pain and provide you with tools to manage it. However, you may still find yourself wondering if a call to the nurse is warranted in the middle of the night, or if it should wait until morning.

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The hospice team will provide guidance on these matters, but questions are common. As a good rule of thumb, always call and ask when you don’t know what to do.

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Call hospice immediately for potential signs of severe pain

Contact your hospice team right away for signs of severe pain that don’t respond to treatment, such as the following:

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Unmanageable restlessness
Aggressive behaviors that put you or your loved one at risk for falls or injury
Distressed yelling, loud moaning or calling out that can’t be consoled or distracted
Sudden change in mobility, for example, a sudden loss of ability to stand

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Don’t call 9-1-1. If your hospice team can’t manage your loved one’s symptoms at home they can arrange a trip to the emergency room if needed. If they arrange it they’ll cover the cost. If not, there’s a chance you can be liable for any charges.

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Curious about Medicare hospital coverage for hospice patients? Find out more about the Four Levels of Hospice Care.

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Watching for Non-Verbal Signs of Pain in a Loved One

Whether your loved one’s pain is from a chronic condition, their terminal illness, or just from lying in bed so much, chances are they’ll be hurting continuously to some extent during the dying process. Unfortunately, as the end of life progresses, they may not always be able to express that pain verbally.

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Becoming familiar with the non-verbal signs of pain can help you support your loved one in moments they can’t speak for themselves. Relieving their pain can improve their energy level, mobility, mood, and quality of life.

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Supporting quality of life during the final journey is what hospice care is all about.

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Do you want to learn about how to best support your loved one’s comfort as they near their final chapter of life? Hospice Vs. Palliative Care

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