Basic pain management can go a long way toward improving your loved one’s comfort. Besides being valuable in itself, comfort may also mean he can do more of what he wants or needs to do, from enjoying time with friends to visiting the doctor.
Fine-tuning may help even more. With careful attention and small tweaks, you may find it’s possible to reduce pain levels further, shorten the amount of time he’s in pain, or prevent side effects that bother him.
Keeping tabs on pain means knowing when it occurs, how severe it is, what it feels like, and how it responds to remedies. These things can change all the time. So monitoring should go on throughout the day.
To help monitor pain, ask your loved one to rate the severity and describe the nature of the pain.
“Pain assessment is about using the right words,” explains Gail Loughlin, RN, CHPN, clinical liaison at Providence Hospice of Seattle. “Sometimes ‘pain’ is not even the right word. It may be more useful to ask, ‘Are you feeling uncomfortable?’ or ‘Are you having any discomfort?’ Using these words may help the person understand that pain is not only something that is sharp and excruciating.”
You can also watch for nonverbal signs of pain, especially if your loved one has trouble speaking or is not conscious. Other questions about pain— such as When did it start? and Is it constant?—can provide useful information.
Check in about pain again after giving pain medicine or using another remedy. “One of the things that I really emphasize — to professionals, too — is that if pain is present, give the pain treatment, and then be sure to reassess,” says Loughlin.
This helps you know how well the remedy is working. Some remedies start (or stop) working more quickly than others. So ask the doctor or nurse how long to wait before assessing pain after each remedy. One hour is usually a reasonable timeframe.
“As a nurse, when I go to sit down with somebody and find out how they are doing and they have a log of what’s been going on, it’s really helpful,” says Loughlin.
There can be a lot to know about administering pain medication. There are several types of pain medicines and they come in different forms and doses. Often patients take more than one, perhaps to address different kinds of pain. How can you keep it all straight?
Managing medicines can be tricky — but it’s important. Giving medicines exactly as recommended or prescribed by the doctor helps ensure that the medicines are as effective and safe as possible.
Pain medicines, like all medicines, can have side effects. They vary depending on the type of medicine and the specific drug used. Common side effects of pain medicines include constipation, nausea, gastrointestinal bleeding, and drowsiness.
Not only are these side effects unpleasant, they may make someone reluctant to take the medicines that will relieve their pain. Your efforts to stay informed about side effects can greatly improve the patient’s level of ease and comfort. Information will help you know what to expect and how to prevent, reduce, or resolve unpleasant side effects.
For example, someone may want to stop taking opiate pain relievers because she doesn't like the side effect of being drowsy. Armed with the right information, you could assure her that the drowsiness usually goes away in a few days. However, if the drowsiness "is prolonged, if it doesn’t get better in a couple of days, they need to talk to their doctor about it," says Charles Chabal, MD, medical director of the Evergreen Pain Management Center in Kirkland, Washington.
There are many nondrug remedies that can help with pain. Often these remedies are not enough on their own, especially if the pain is moderate to severe. But they may complement the effects of pain medicines.
Ask the medical provider about using complementary pain-relief methods. Find out which may help or harm when given along with pain medicines. Some pose few risks, but others can be dangerous in certain situations. For example, using a heating pad or hot tub while wearing a fentanyl patch can dangerously speed up delivery of the medicine. Massage, though soothing to many people, may be dangerous for people at risk for deep vein thrombosis (blood clots in the leg).
Pain Scenario 2: The Pain Is Not Well Managed
“My loved one’s pain does not seem well managed. I need to know how to respond when her pain gets worse and how to get a more effective pain-management plan in place for the future.”
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“Caregivers need to know there are a lot of alternatives and techniques and medications. If they’re not getting adequate pain relief, a solution probably exists. They just need to ask.”
—Charles Chabal, MD, medical director of the Evergreen Pain Management Center in Kirkland, Washington |
Physical pain hurts in our bodies, but it can also hurt emotionally, mentally, and spiritually. This applies even when the physical pain is happening to someone else. If your loved one’s pain isn’t well managed, you may be feeling sympathy for her and feeling your own reactions, like fear, frustration, sadness, or other emotions.
As you try to deal with her pain, both in the moment and long term, keep in mind that you and she have every right to pursue effective relief, and medical providers have many options that may help.
“Caregivers need to know there are a lot of alternatives and techniques and medications,” says Charles Chabal, MD, medical director of the Evergreen Pain Management Center in Kirkland, Washington. “If they’re not getting adequate pain relief, a solution probably exists. They just need to ask.”
“It’s important for patients and families to advocate for good pain management,” agrees Gail Loughlin, RN, CHPN, clinical liaison at Providence Hospice of Seattle, who finds patients sometimes suffer unnecessarily. She encourages caregivers, medical providers, and patients themselves to take pain seriously and to monitor it like blood pressure or another vital sign.
“From the hospice perspective, we are about the aggressive pursuit of comfort. If plan A, B, and C have not worked, we are not giving up,” Loughlin says.
Turn to the Pain Plan
A pain management plan, or “pain plan” for short, is a roadmap to achieving relief. It’s a written document that describes all the pain relief methods your loved one can use — the whats, whens, whys, and hows of administering medicines and nondrug remedies to subdue pain as best you can. The plan should also include information about what to do if the method of choice doesn’t work and how to know when it’s time to call the doctor.
If your loved one has a pain plan, that’s a good place to turn when pain seems poorly managed. Look over the plan to determine which remedies apply to the type of pain he’s having. Make sure your loved one has followed the steps outlined there. One important factor is taking medicines on schedule. For more on this, read about
administering pain medicines.
If you can’t find an answer in his pain plan — for example, if he’s having a pain he hasn’t had before — call the doctor.
The pain plan is meant to be a work in progress. It should evolve as your loved one’s needs evolve. The strategy is simple: “Evaluate the plan, and change it if it’s not working for the patient,” says Jessie Bell, hospice nurse consultant for Enclara Health.
If your loved one doesn’t have a pain plan, you’ll want to get one set up for him. That will require a conversation with his healthcare team. Read the pain plan article for guidance on creating a plan. For help dealing with pain he’s having right now, call the medical provider.
Get Help from the Medical Provider
Let your loved one’s medical provider know if pain is bothering her. You don’t need to wait until her next appointment with the doctor. Get in touch with the doctor or nurse, the hospice worker, or whichever healthcare team member is readily accessible to you.
To make effective changes to the pain management plan, the medical provider will need to know the following.
- How intense is the pain? (Use a pain scale to rate the intensity.)
- Can you describe the pain?
- When did it start? Was it gradual or sudden?
- Is it constant, or does it come and go? If it comes and goes, how often does it occur, and how long does it last?
- Where is the pain located?
- What movements or actions make it better or worse?
- Is it the same as or different from pain the patient has had before?
The provider will also need to know about any pain-relief method your loved one used: what it was, when she used it, how much it helped, how long it took to work, and how long the relief lasted.
A
pain journal can help you keep track of your loved one’s pain and her response to remedies. “As a nurse, when I go to sit down with somebody and find out how they are doing and they have a log of what’s been going on, it’s really helpful,” says Loughlin.
Once the medical provider understands how your loved one feels, he may suggest changes like these.
- Giving a greater dose of medicine.
- Giving the medicine more often.
- Switching to a longer-acting or sustained-release form of the medicine.
- Switching to a stronger medicine.
- Adding another medicine to those your loved one already takes.
- Changing or adding to complementary pain-relief methods your loved one uses.
“Different kinds of medicines address different types of receptors in our nervous system,” explains hospice nurse Bell. “So the combination of pain medicines needs to be really individualized depending on the cause of the pain. If a person isn’t getting relief, he or she may need a different combination.”
Safety Tip
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| Never make changes to the pain medicine dose or frequency without the medical provider’s approval. |
What If the Doctor Doesn’t Help?
In the past, some doctors hesitated to prescribe strong pain medicines for patients or to increase doses. Sometimes they resisted out of concern about addiction. (In reality, addiction is rarely a problem for people taking pain relievers to manage true pain.)
Sometimes the problem was that doctors simply didn’t understand as much about pain management or have as many options as they do today. “Our technology has gotten so much better for controlling pain,” says Charles Chabal, MD.
These days, it’s unusual for doctors to resist prescribing pain relievers for people with serious illness, according to Chabal. If you ever believe the doctor is resisting pain relief measures, Chabal has two suggestions.
- Have a frank discussion with the physician.
- Consider asking for a referral to a pain management clinic.
Doctors and clinics that specialize in pain management can be a good resource if the usual care team runs out of options.
Using Complementary Pain-Relief Methods
We don’t always have access to more or different pain medicines 24 hours a day. Pharmacies may be closed. Our transportation options may be limited. If it’s the middle of the night when you need to do something, nondrug remedies like relaxation techniques, massage, heat, or ice may help.
As with medicines, get guidance from the medical provider. While some complementary methods are appropriate for almost anyone, others can be dangerous in certain situations. Ask the medical provider which ones are safe for your loved one. You can learn more about a variety of options in the section on
complementary pain-relief methods.
Why Is the Pain Happening?
Another part of managing pain better is understanding why the pain occurs — especially why it gets worse when it does. If you, your loved one, and the medical provider figure this out, you may get some important clues about preventing or controlling the pain. Here are some situations that can cause pain management problems.
Breakthrough pain is pain that flares up from time to time and is unpredictable. A person who takes a steady dose of medicine around the clock to control constant pain may occasionally have pain that “breaks through.”
His doctor may prescribe another medicine, or the same medicine in a different form at a different dose, to take when flare-ups occur. Doctors prescribe a short-acting, or immediate-release, medicine — one that takes effect quickly — for breakthrough pain.
“Breakthrough pain could be related to a couple of things,” says Bell. “If a patient’s pain has been managed steadily, but he adds activities to his routine, like going out to a doctor’s appointment or having company over, that could change his pain level. It could also be that he is becoming used to his pain medicines.”
Over time, the body adjusts to opiate pain relievers, so patients may need more medicine to maintain relief. Report problems with breakthrough pain to the doctor, and ask whether a medicine adjustment is in order.
Incident pain is pain that flares up in relation to a certain activity and is predictable. For example, a person may have increased pain whenever he needs to get out of bed to bathe or whenever the dressing on his surgical incision is changed. The doctor may prescribe medicine to take within a certain period before the triggering activity in order to prevent incident pain.
End-of-dose pain is pain that increases right before it’s time for the person’s next scheduled dose of medicine. End-of-dose pain may be a sign that the person needs a change to his pain plan. For example, he may need a higher dose or less time between doses. Or he may need to switch from regular pain medicine to a long-acting, or sustained-released, version. These are issues to discuss with the doctor. Don’t change the dose or schedule without the doctor’s approval. But by all means, do ask the doctor to re-evaluate the medicine regimen if end-of-dose pain is a problem, Bell advises.
Take a Holistic Approach
Talk with your loved one to find out more about her experience with pain. Don’t just ask about her physical pain, ask how she’s feeling in a broader sense. Emotional, mental, or spiritual pain may arise from or contribute to physical pain and make physical pain seem worse. Look beneath the surface for other reasons why her pain is increasing.
“Explore the other dimensions of pain,” hospice nurse Gail Loughlin suggests. “Look at the whole person.” You can ask a question such as “How are you feeling on the inside?” to open the discussion of emotional and spiritual well-being.
Scenario 3: They Aren’t Open about Their Pain
“It seems like my loved one feels worse than he’s willing to admit. I suspect he’s not being completely honest about his pain. What can I do?”
Your loved one’s comfort and ability to maintain the richest, most active possible life depend in large part on good pain management. But to devise and implement an effective
pain plan, you and his healthcare team need to know how he feels—when he has pain, how severe it is, what helps, what doesn’t. If he’s not telling, you might feel stuck in an upsetting and frustrating position.
Open communication on your part is the best approach for improving matters. Try talking about your concerns and ask him whether he’s holding back and why. Encourage him to speak honestly about his pain. Ask his doctor and nurses to help, too.
How to Get Started
“The first step is to examine why you think your loved has more pain than he reports,” says Enclara hospice nurse
Jean Schneider, RN. For instance, have you noticed
nonverbal signs that suggest a higher level of pain than he describes? Behaviors such as wincing, guarding, or avoiding certain movements can be clues about the presence and severity of pain. Keep track of any clues you’ve noticed, so you can bring them up with your loved one.
Before starting a conversation or drawing any conclusions, take a moment to examine your own perceptions. “Sometimes caregivers feel guilty [about their loved one being ill],” says Schneider. As a result, they are prone to worry about pain even though their loved may not have any. Or they think their loved one is in more pain than he really is.
Another Enclara hospice nurse, Jessie Bell, RN, says she’s seen this dynamic, too. “Sometimes you have to be able to step back,” she says. Both nurses empathize with caregivers’ sensitivity to their loved ones’ discomfort. But they also recommend that caregivers consider whether they might be projecting their worries onto loved ones and perceiving pain that isn’t there.
Of course, the only way to know is to ask. There’s no device to objectively measure pain and compare it with your loved one’s report. So let him know if you’re concerned.
“Talk to the patient about it,” says Bell. Explain why you doubt that he’s being forthcoming. Mention nonverbal signs of pain or other clues you’ve noticed. Describe any declines in his ability to function that you think are related to untreated or undertreated pain. Emphasize your desire to help him be comfortable. Try not to judge. Keep in mind that if he is holding back, there must be reasons. Ask: “Is there anything that’s keeping you from saying how you really feel?”
Why Patients Don’t Speak Up
There are many reasons for patients to sometimes underreport their pain. Here are some of the more common ones.
- Stoic patients tend to downplay their symptoms. “Some people, especially older people, are very stoic,” says Gail Loughlin, RN. “Complaining is not part of who they are. They are not going to talk about what they are really feeling.” Hospice nurse Jean Schneider agrees: “They say, ‘Oh, it’s not bad. I can handle it.’” Some people believe that admitting to pain or wanting relief is a sign of weakness or might place a burden on others. Some expect to have pain and think nothing can be done about it, so they’re not inclined to report it.
- Some patients admit their pain to friends and family but not to their doctor. “People are afraid of being ‘bad’ patients,” explains Charles Chabal, MD, medical director of the Evergreen Pain Management Center in Kirkland, Wash. This can translate into patients’ claiming they feel better than they really do, Chabal says. If a patient is hoping for a cure to a serious illness, she may also believe she should let her doctor focus on treating her disease, rather than “distract” him by talking about her pain, Chabal adds.
- Personal background plays a part. “Some cultural or religious traditions see a redemptive value in suffering,” explains Loughlin. “So [when you ask a patient about her pain], you can have that mixed in.” A patient from this type of tradition may believe it’s noble to suffer and improper to ask for or expect relief.
- Patients sometimes forget. After pain passes or it’s treated and relieved, a patient can simply forget how severe it was, says Schneider. So when the doctor asks, the patient underreports the severity or forgets to mention the episode at all.
- Near the end of life, patients may fear that increased pain means death is close. It doesn’t always mean this, says Dr. Chabal, who specializes in pain management. But it’s a fear nonetheless. A patient struggling to accept her approaching death may deny that her pain’s getting worse as a way of denying her death.
- Patients may have had problems with pain medicine. Unpleasant side effects, such as nausea and subtle changes in mental status, prompt some patients to underreport pain in order to avoid dosage increases, according to Chabal.
Once you understand someone's reasons for underreporting pain, you can address them directly. For example, if he forgets to report his pain accurately to his doctor, set up a
pain journal, in which he documents his pain throughout the day. Then he can show this written record to his medical providers instead of trying to remember the details.
Make Pain Relief Meaningful
You may be able to get a person who is reluctant to acknowledge and treat pain to change his mind by explaining how pain relief serves his goals, says Loughlin. What’s important to your loved one? How can pain relief help him achieve that? He may be more willing to ask for pain relief if he sees it as a way to do what he wants or to feel the way he would like.
For instance, does your father think suffering is something he should endure and not talk about? Point out to him that better pain relief might mean he can get to his beloved grandson’s baseball games. Does your wife not want to “bother” the doctor about her pain? Suggest to her that better pain relief might mean she can take showers on her own again—or get out of the house more often, sleep better, have more energy, feel less crabby with the kids, or whatever is meaningful to her.
The key is to find the motivational thread that works for that person, says Bell. For many people, it has to do with autonomy and mobility, she says. “They might be able to regain some of their independence if their pain was under better management.”
Enlisting Help
If your loved one still neglects to report pain honestly to her medical providers, you may have to step in and tell them yourself.
“Let the patient know you ‘really want to talk with the doctor about what I’m seeing,’” suggests Bell. Ideally, get his permission to do so, assuming he can understand what’s going on and make decisions. This is an important part of maintaining trust in your relationship with your loved one. If you do speak with the medical staff, be prepared to explain why you think the person is underreporting pain.
Sometimes a caregiver feels restricted because the patient refuses to permit him to discuss the matter with medical providers, says Bell. The refusal may be part of the patient’s attempt to maintain control, as least of her pain, in circumstances where she feels little control over anything else. “They are losing control bit by bit,” says Bell, “and they may be trying to hold on.” If you’re in a situation like this, focus on getting the support you need to come to terms with it, advises Bell.
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