Pain Management at the End-of-Life
The heart of hospice care is effectively managing the patient’s pain. Simple but profound acts of living such as breathing, eating, and holding their grandbaby become positive experiences that will improve their quality of life no matter how much time they have left.
When I asked my hospice patient Peter* about his pain, he tensely replied:
“I’m fine if I don’t move.”
“Well,” I said, “what is important to you? Do you want to stay in bed today?”
“My granddaughter is coming in a bit, and, at some point, I will probably have to use the bathroom.”
“You have pain medicine prescribed to you,” I reminded him. “You can start with the smallest dose and you should start feeling better within an hour.”
He hesitated but agreed to try it. I gave him 5 milligrams of morphine which is similar to taking one Vicodin. After about 30 minutes, the smile returned to his face. After an hour, he was visibly relaxed and able to get out of bed to visit with his granddaughter when she arrived. There is nothing sweeter than managing someone’s pain so they can enjoy optimal quality of living, whatever that means to them. My opinion: NO ONE SHOULD DIE IN PAIN.
Suffering is only intolerable when nobody cares.
Dame Cicely Saunders
Helping your loved one manage their pain is one of the most difficult aspects of hospice caregiving. It tears you up to see the patient in pain. You want them to make their own decisions, stay in control, and be as alert as possible. Most hospice caregivers are non-medical family members, and the learning curve is steep. You likely have questions. What is oxycodone and Roxanol? Isn’t Methadone for drug addicts? When will the morphine start working? More often than not, you don’t even know what questions to ask. I want to provide you with some basic knowledge of pain management in hospice care. I won’t focus too much on the emotional aspects of dealing with pain — that is a beast and will be covered in depth in another blog post.
Pain Management in Hospice and Palliative Care
Dame Cicely Saunders, the founder of the hospice movement, developed a concept called total pain. In her research, she showed that while pain affects patients physically, it also impacts them emotionally, spiritually, and socially. When my hospice patients experience pain, they often simultaneously experience fear that their cancer is spreading, anxiety that they will die soon, or a tendency to shut down socially. Many suffer spiritually and question their creator, their life’s meaning, or what is next. Saunders’ mission was to prevent pain rather than to alleviate it so patients could die in physical, emotional, and spiritual peace. This is the cornerstone of hospice care.
The bottom line is that hospice professes that we can manage 98% of patients’ pain. Our goal is to keep the patient comfortable with the many tools that we have so they can live the rest of their life with optimal quality of life. This means making the patient as alert as possible with their symptoms medically managed while staying consistent with the patient’s goals.
Medications are chosen for each hospice patient depending on many variables: their illness, age, medical history, kidney and liver function, their background with opioids, and practical considerations such as cost, location, and who is administering the drug. We follow basic guidelines that start conservatively and move to more serious pain-fighting measures as the pain progresses.
The Step Ladder Approach
The step ladder approach refers to the World Health Organization's approach to pain management. The hospice medical provider may initially prescribe over-the-counter pain medications such as acetaminophen (Tylenol) or ibuprofen (Advil or Motrin) to use as needed. If the pain occurs throughout the day, the provider may then schedule it for around-the-clock coverage, such as every six hours.
If over-the-counter medications are not enough to manage their pain or if the pain is moderate to severe, your medical provider may prescribe an opioid. Opioids are pain relievers requiring a prescription. The following short-acting opioids are commonly prescribed for a patient in hospice:
Morphine, also known as morphine sulfate immediate-release tablets
Roxanol, which is highly concentrated liquid morphine
Short-acting oxycodone
Lortab/Norco/Vicodin, which is hydrocodone plus acetaminophen
Dilaudid, or hydromorphone
Methadone, either short-acting or long-acting pain medication
If your loved one’s pain increases or varies throughout the day, their medical provider may schedule short-acting pain medications every four to six hours to allow for more consistent relief, or they may prescribe a long-acting opioid that provides eight to 12-hour coverage. Remember, the goal is to prevent pain.
Commonly prescribed long-acting opioids include:
Oxycontin, which is a long-acting oxycodone
MS Contin — long-acting morphine
Methadone — again, can be used as a short-acting or long-acting pain reliever
Duragesic, or a fentanyl patch that provides 48 to 72 hours of pain coverage
Laxatives/Stool Softeners
Opioids paralyze the gut muscles, and constipation is an unrelenting side effect unless there is some pharmaceutical intervention. When a doctor prescribes an opioid, they usually also prescribe a laxative. As the opioid dosage increases, so do the laxatives. When a patient is constipated, it can cause further issues such as nausea, vomiting, delirium, and pain. It’s a quality of life issue so we aggressively treat constipation. Usually, a patient feels better if they are not constipated.
Adjuvants
Adjuvants are excellent additions to one’s pain regimen because they don’t have the same side effects as opioids, and they may help to limit the use of opioids overall. They may be prescribed in addition to your typical pain regimen. Adjuvant pain medications can include antidepressants, anti-seizure medications, muscle relaxants, sedatives, or anti-anxiety medications. Their primary function is generally not used for pain management but is effective in alleviating certain types of pain (e.g., bone pain or nerve pain) and/or the fear and anxiety that may accompany the pain.
In general, pain at the end-of-life is a moving target. If your loved one has been in pain, we usually anticipate that their pain will continue to increase over time. Because patients using opioids will develop a tolerance, the dosage will likely need to be increased. Every day or every week may be different which is why it’s important to continually assess how your loved one is doing.
Pain Assessment
If patients can describe or rate their pain on a zero to 10 pain scale, it’s helpful to get a baseline to determine how effective their pain medications are. If pain medications are prescribed for as-needed (PRN) use, it’s best to take pain medication when the pain is rated three or four out of 10 (mild pain), rather than wait until the pain is moderate or severe. It’s also important to anticipate pain; if the patient generally has pain when they are repositioned in bed or when they go for their morning walk, they should take their prescribed PRN medication one hour before the activity. Even if the patient only experiences pain for two minutes while they are being repositioned, that is two minutes too much. If their pain is not well palliated during these two minutes, patients may end up having anticipatory pain which makes them fearful of any movement which may lead to less mobility, decreased quality of life, and increased anxiety.
If the patient is unable to describe their pain or unable to speak, families and caregivers should look for these indicators of pain:
Grimacing (clenched teeth)
Frowning
A furrowed brow (facial expression of concern)
Crying
Moaning
Groaning
Grunting
Labored breathing (fast and/or deep breathing)
Tension or rigidity in the body or face
Clenched fist, knees pulled up
Guarding parts of the body — for example, if their stomach hurts, they will block their stomach with their arm to make sure no one touches this body part
Refusal to move
Withdrawal from typical activities
Irritability or agitation
Pacing
Repeating words
Pain Medication Peak and Duration
When your loved one is experiencing a distressing symptom such as pain, it’s helpful to know how long the medication will take to work and how long the medication should last. Understanding these technicalities will help you advocate for your loved one. The type of medication and where you administer the medication (route) will determine when the medication reaches its optimal effectiveness (peak) and how long it will last (expected duration).
Most oral short-acting pain medications start to work (the initial onset) in about 30 minutes and will reach their peak after one hour. Depending on the medication, it should continue to alleviate the pain for the next four to six hours.
For instance, let’s say the patient’s pain is a 10 out of 10 on the pain scale. You give them their prescribed dose of oral short-acting morphine at 6 a.m. If at 7 a.m. — peak time — their pain is still distressing at a five out of 10 on the pain scale, call the hospice team because their pain should be mild or non-existent by then.
On the other hand, if their pain is alleviated by 7 a.m. (peak time) but three hours later at 10 a.m., their pain is a seven out of 10, you should call the hospice team because the pain medication didn’t last the expected duration.
There are always exceptions and variability depending on one’s body and the actual medication (as you can see from the chart), so double-check with your hospice team or the pharmacist regarding specific medications.
It’s important to wait until the peak time (usually an hour for short-acting oral opioids) to determine if it’s an effective dose for your loved one, which is a loooooooong time to wait when your loved one is suffering.
If your loved one is in pain, it may be a welcome relief to have someone sit quietly and be with them. Sitting in supportive silence and bearing witness to someone’s pain is intense but a beautiful practice in compassion. You’re saying, “I am not leaving you. I know this is hard, and here I am.”
What are the Side Effects of Opioids?
Typical side effects of opioids include constipation, sleepiness, nausea, rash, itching, hallucinations, and respiratory depression. As I explained earlier, unless there is a pain crisis, the doctor will begin with the smallest dose and safely increase it over time. When opioids are used and increased safely and properly within the prescribed time frame, they should not cause respiratory depression. With the exception of constipation, these side effects should improve within a few days to weeks of starting the opioid. If your opioid is causing troubling side effects, call your hospice team or medical provider. Because one opioid may make you nauseated but another may not, it may be helpful to try a different opioid if recommended by your team.
Patients and families are often worried about being less alert or confused if they take an opioid. Not everyone gets sleepy when they take an opioid, and sometimes patients may actually have more energy because their pain is finally well-managed. If it becomes an issue when the patient first starts taking an opioid, remember that it usually takes a few days for the opioid to reach a stable level in your body and they likely will become more alert again.
A critical question to ask the patient is: “Would you rather be alert with some pain or sleepy with less pain?” Some patients may welcome the sleep over the pain they have been experiencing, or they may want to be alert every moment of the day no matter how awful their pain is. Their answer to this question may change daily. I try to ask the patient in front of family members so the family can understand how distressing the pain is.
Addiction
Addiction is a disease that requires a person to take a drug despite negative consequences. Hospice patients who are in pain take opioids because they need them. They are having legitimate pain, and this pain should be relieved because NO ONE SHOULD DIE IN PAIN. When pain is treated safely and properly, addiction isn’t an issue for hospice patients. It’s normal and expected that hospice patients may develop a tolerance to opioids — their body becomes accustomed to the dose, therefore, requiring an increase, but this isn’t the same thing as addiction. If you have concerns, call the hospice team.
Non-Pharmaceutical Approaches to Pain
I personally prefer to give pain medications and then institute one of the following non-pharmaceutical approaches as we are waiting for the medication to alleviate the pain. One non-pharmaceutical approach to pain is distraction. Watching tv, making art, connecting with animals, listening to music, reading a passage or chapter from their favorite holy book or novel, or changing their scenery can be great ways to divert the patient’s attention away from pain.
All hospices have a social worker and a chaplain on staff who can help the patient to work through the spiritual, emotional, and social issues which can intensify physical pain. Unresolved grief, existential issues, financial concerns, relationship struggles, and spiritual questioning are common at the end of life. This team-centered approach to care is one of hospice’s unique gifts. The social worker and chaplain provide depth and richness to hospice care and are underutilized in my humble opinion. Use the team.
Many patients have fear or anxiety accompanying their pain, and it’s often a welcome relief to have someone sit quietly and be with you. Sitting in supportive silence and bearing witness to someone’s pain is an intense but beautiful practice of compassion. That is all. You’re saying, “I am not leaving you. I know this is hard, and here I am.” And then you wait together.
Sometimes ice packs or heating pads can help, but you want to make sure they aren't applied for long periods. Sometimes hospice patients also have nerve pain and cannot sense when the heat or ice is too much, so be sure to watch out for that.
Hospice uses a team-centered approach to care for the patient and family, one of hospices’ unique gifts. The social worker and chaplain provide depth and richness to hospice care.
Use the team.
I love any complementary therapy I can get my hands on such as massage, reiki, acupuncture, or craniosacral therapy. I am a reiki master, and I am blown away by the healing power of intentional touch. I once placed my hand on my patient’s back and intentionally sent loving energy to him as I listened to his heart and discussed his day. I kept my hand on the center of his back for a while, and he said, “I don’t know what you are doing with your hand, but my shoulder pain is gone.” Presence, touch, intentionality, sitting, staying — these are all beautiful tools.
Medical marijuana is another non-pharmaceutical approach to pain. It’s legal in many states but may require a recommendation from a medical doctor, a doctor of osteopathy, and/or a medical card to obtain it. Patients sometimes use marijuana for symptoms such as pain, nausea, loss of appetite, and anxiety. If you are interested in this approach, ask your hospice team if they can recommend any resources for you.
The heart of hospice care is effectively managing the patient’s pain. When patients are free from pain, they have more of a desire to eat, to move, to socialize, and to breathe deeply, They can go to the toilet without gritting their teeth or can be repositioned in bed gently and tenderly without feeling pain. They can enjoy their shower, engage in a game of cards, and hold their grandbabies with ease. These simple but profound acts of living are now positive experiences rather than dreaded obligations that will positively impact their quality of life no matter how much time they have left.
Blessings.
*Writer’s note: Because of privacy laws, the subject in this story is not an actual patient, but a story that includes a combination of many many patients and scenarios over the years.