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Talking about pain for hospice patients

By Terre Mirsch

Last week we discussed common misconceptions regarding pain management. As one of the most common symptoms impacting people with advanced illness, uncontrolled pain can impact quality of life, and even cause other physical and emotional symptoms. Talking about the pain and providing health care providers with essential information is the first step in ensuring adequate pain management. As caregivers, this information may also help you in advocating for your loved one’s comfort and in communicating with your loved one about their experience.

Knowing what question might be asked

Common questions that your doctor and members of the hospice team will ask your loved one include:

  • Where is the pain? Those living with serious illness may have pain in several locations. It is important for your loved one to share all areas that hurt.
  • What does the pain feel like? Describing the pain will assist the health care team in understanding what type of pain your loved one is experiencing. This is important because different types of pain respond to different types of medications and treatments. Common words used in describe pain include dull, aching, sharp, throbbing, burning, stabbing, tingling, or cramping to name a few.
  • How bad is the pain? Your loved one may be asked to rate the pain using a 0 to 10 number scale, where 0 means no pain and 10 means the worst possible pain imaginable. Pain intensity can also be described with words such as none, mild, moderate, severe, or worst possible pain. Rating the pain helps the health care team to know what medication treatment is best, how well the treatment plan is working, and whether or not changes need to be made.

Pain Intensity Scale

0         1         2         3         4         5         6         7         8         9         10

              No Pain                  Moderate Pain                           Worst Possible Pain

  • What is your pain goal? While the goal is to eliminate pain completely while maintaining alertness, this is not always possible. Understanding what level the pain needs to be in order for your loved one to be comfortable and do the things they want to do is important.
  • What makes the pain better or worse?  Your loved one may have already found ways to alleviate the pain or there may be certain activities or positions that make the pain worse. The more the health care team understands your loved ones pain experience, the better they will be able to develop an effective pain treatment plan.

Your role as a caregiver

Caring for a loved one with unmanaged pain is physically and emotionally difficult. As caregivers there are several things that you can do to help ensure your loved one’s pain is assessed and managed properly:

  • Ask about the pain, and believe your loved one’s report of pain.
  • Listen for words other than “pain” such as “discomfort”, “ache”, or “soreness”.
  • Watch for nonverbal cues that could indicate pain including grimaces, moaning, or tensing of the body when moving.
  • Assist your loved one in using a pain diary to record pain frequency, description, pain levels, when medications or other treatments were administered, and their effectiveness.
  • Ensure that your loved one takes all medications as prescribed.
  • Communicate information to the health care team.

Living with advanced illness does not mean living with uncontrolled pain. As an advocate for your loved one’s comfort, you can assist the healthcare team by talking about it and providing as much information as possible.

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