Caregiver Concerns About Pain
The Experts Offer Advice
By Laurie Fronek, Staff Writer
Here are some typical caregiver concerns about pain.
I’m worried that my wife will suffer in severe pain. Is this what we should expect?
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“Fears of pain and suffering are very real, and they are very valid as well.”
—Gail Loughlin, RN, CHPN, clinical liaison Providence Hospice of Seattle
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First, know that some people with serious illness or near the end of their life do not have much pain. Dying (or illness leading up to death) is not necessarily painful. Those who do experience pain do not have to suffer. If your loved one is in pain, she probably has many options to help relieve it. In fact, doctors may prescribe a pain management routine, such as regularly taking long-acting pain medicine, so your loved one can prevent pain rather than try to control it after it starts.
“Is there going to be a lot of pain?” is a common question from patients and families served by Providence Hospice of Seattle, says Gail Loughlin, RN, CHPN, the hospice’s clinical liaison. “We talk with people about hopes and fears before they come onto hospice service. Fears of pain and suffering are very real, and they are very valid as well,” Loughlin says.
“Uncontrolled pain is not OK,” she adds. “We’ve got a lot of ways that we can address pain,” including many different medicines and combinations of medicines. “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. “If the interventions on hand aren’t doing it, we need to go to bat to get more.”
There are two keys to ensuring adequate relief for your loved one, according to Loughlin. The first is to assess her pain regularly so you know whether she needs greater relief, and the second is to advocate for comfort by talking with her medical providers.
I’m not sure how to tell how much pain my father is in. How can I know?
You can use one of several simple
pain scales to assess his pain—if he can talk or if he can point to his pain level on the scale you show him. If he can communicate verbally, but you’re not sure he will
talk honestly about his pain, you may want to bring up the subject. Ask him whether he feels comfortable telling you about his pain and what might help make this easier. Explore his
expectations and beliefs about pain and pain management. Does he have a reason for hesitating to report pain or its severity? For example, does he expect to have pain and think nothing can be done about it? Does he dislike the pain management options offered so far?
If your loved one is not able to communicate verbally, you can watch for
nonverbal signs that might indicate pain. For example, people who can’t describe their pain in words may groan, grimace, or be restless or agitated.
“One of the things that I really emphasize—to professionals, too—is that if pain is present, use an intervention [such as a pain medicine], and then reassess, say, an hour later,” says Loughlin. “See if it worked.” Reassessment is especially important in nonverbal patients, she says, because they can’t speak up if they still have pain.
My mother seems sleepy from her pain medicine. Is this OK? Is she being overmedicated?
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“Typically, we can get people comfortable and it doesn’t have to be all or nothing — total pain or total sedation."
—Gail Loughlin, RN, CHPN
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It’s important to keep communicating with your loved one about how alert or sedated she feels. But it’s also important to make your own observations, and talk with her and the medical provider if you have concerns about her response to pain relievers (or any medicines).
Many types of pain relievers are not sedating. Opiate pain relievers (also called narcotics) make some people sleepy at first. Usually, the sedating effects go away as the body adjusts to the medicine during the first few days, hospice nurse Gail Loughlin says. If the dose is increased, the body has to readjust, so sleepiness may recur.
If your loved one feels less alert taking opiates, she may opt for a slightly decreased dose (and more pain) instead. These choices can be a balancing act. Sometimes patients, caregivers, and the medical team decide to increase doses, knowing that the patient may no longer be as alert, because pain relief becomes the higher priority. Ask your loved one how she wants to balance this, and know that her wishes may change later.
“We’re about finding the middle ground, because for most of us that’s where quality of life occurs,” says Loughlin, referring to the staff’s approach at Providence Hospice. “What we’re aiming to do is adequately medicate pain to the point of comfort as it’s defined by that patient. If I have a patient who is alert, I always talk with them about ‘What is comfort to you?’”
The answer helps Loughlin recommend a balanced strategy that decreases pain and preserves alertness as much as possible. “Typically, we can get people comfortable and it doesn’t have to be all or nothing — total pain or total sedation,” she says.
I’m afraid my loved one will become addicted to painkillers. Can this happen?
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“A lot of people misunderstand what addiction is. It’s typically psychologically driven. It involves taking the wrong medicine for the wrong reason.”
—Gail Loughlin, RN, CHPN, clinical liaison for Providence Hospice of Seattle
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People often fear that taking opiates may lead to addiction. It may help to know that addiction is very rare in people with serious illnesses who take these medicines for real pain relief. Anyone who takes opiates may develop tolerance —which means their body needs an increased dose to feel the same relief. Usually, it’s perfectly fine for doctors to increase the dose as needed. This is different from addiction—which has to do with a desire to seek and abuse drugs despite the dangers and health risks involved.
“A lot of people misunderstand what addiction is,” Loughlin explains. “It’s typically psychologically driven. It involves taking the wrong medicine for the wrong reason—for the high— despite harm to oneself. When someone is properly using medication, they are using the right medicine for the right reason. They are doing the right thing to address the symptoms that come with their disease.”
Personal experience with addiction might heighten your or your loved one’s concern about addiction to pain relievers. If so, share the concerns with the medical provider, a counselor, or a social worker.
Loughlin says patients with a history of addiction or substance abuse sometimes require larger doses of pain medicine to get relief. Yet they are often reluctant to take the medicine for fear of reawakening their addiction. A common feeling is: “I used to have this problem, so now I don’t want to go anywhere near those things.”
If this is an issue for your loved one, ask about his concerns and fears and encourage him to discuss them with his medical providers. It may reassure him to know that all of you are aware and are keeping an eye on his medication use to ensure it doesn’t cross the line.
Whether or not they worry about addiction, some people are concerned about building up a tolerance. They think, “If I take pain medicine now when my pain is uncomfortable but bearable, then I’ll build up a tolerance and the medicine won’t work later on, when my pain is worse and I really need relief.” In fact, doctors can almost always increase the dose as needed. They can also combine non-opiate medicines and nondrug remedies with opiates to enhance relief.