A better understanding of pain -- and how to treat it -- means a gentler death for many patients with terminal illnesses.
People who are near death have more important things to do than suffer. The final days, weeks, and months should be a time to connect with loved ones and reflect on life, says Kandyce Powell, RN. As the executive director of the Maine Hospice Council, Powell has stood at the side of hundreds of dying patients over the years.
Too often, this precious time is clouded with pain. More than half of patients with terminal cancer, for example, suffer from poorly managed pain, according to a report in the American Journal of Hospice and Palliative Care. Severe pain at the end of life is distracting, destructive, and, for the most part, unnecessary. "The real sadness is that we forget that we can do so much to improve a person's quality of life," Powell says.
Thanks to recent advances in pain treatments, roughly 90 to 95 percent of all dying patients should be able to experience substantial relief from pain, says June Dahl, PhD, professor emerita in the department of neuroscience at the University of Wisconsin at Madison, and a founder of the American Alliance of Cancer Pain Initiatives. "Complete freedom from pain is not a realistic goal," she says. Instead, doctors, family members, and patients should fully expect pain to fade into the background. On a scale of 0 to 10, treatments can almost always bring pain down to a 2 or 3, she says.
Unfortunately, many myths and misconceptions stand in the way of relief, Dahl says. Until everyone involved in a patient's care knows the facts about pain control at the end of life, too many patients will suffer needlessly.
Pain relief should always be a top priority. If the primary focus is on treating disease, even when the prognosis is poor, it might delay admission to a hospice program that can provide more personal, comfort-oriented care, Powell says.
Helen R. from San Francisco, who lost her husband, Walter, to pancreatic cancer in 2006, says Walter's doctors did it right. Before Walter even needed pain medicine, his doctor gave him prescriptions for pain medications complete with instructions for taking them. She also told him what to expect as the disease progressed. "When Walter's dad was in hospice care with pancreatic cancer, Walter made sure he received enough pain medication," his wife said. "So going into his own illness, he wasn't intimidated about taking what he needed to relieve the pain. For him, it was just part of his day."
Many patients and their families find that hospice programs are especially well-equipped to ease both emotional and physical pain. The goal of hospice is to make your loved one's last days as comfortable as possible and to allow him or her to die with dignity -- not to treat a disease or prolong life.
All hospice programs may not be perfect -- they can have the same staffing and quality of care issues found in other areas of medicine -- but they do offer a different kind of care to dying patients. Hospice programs can deliver care in a hospice facility or, more commonly, in one's own home. Often patients feel more relaxed and less anxious in their own bed. Members of the hospice team -- including nurses, doctors, chaplains, and therapists -- visit the home regularly and teach caregivers how to provide comfort and deliver pain-relieving medications, including narcotics. Hospice workers are also specifically trained to help both the patients and family cope with the psychological and spiritual aspects of death.
For people suffering from severe cancer pain, for example, hospice providers often advise caregivers to give them pain medication at safe, regular intervals to prevent "breakthrough" pain -- sudden bouts of relentless, uncontrolled pain. If you wait until the patient asks for pain medication, he or she may already be suffering, and the pain will be harder to get under control. If you're working with several caregivers, make sure they all understand that the medications should be used to prevent breakthrough pain -- not just to treat it when it appears. This means an around-the-clock dosing schedule could be necessary in some cases.
Even when patients are taking painkillers at regular intervals, however, they sometimes need a change in medication to keep the pain under control. For this reason, family members should serve as pain monitors. One of their most important jobs is to ask the patients for frequent pain updates, Dahl says. "At the end of life, pain can become much greater very quickly," she says. "You can't depend on the patient to tell you when they are in pain. You have to ask."
Such check-ins may not always be easy -- or welcome. Helen says she frequently asked her husband how he was feeling, but that after a while he got tired of it. "He didn't want people hovering," she says. The expression on his face was, 'Can you ask me something else?'" After checking in, it's good to switch roles -- perhaps read to your loved one from a favorite book, or give a gentle back rub.
If direct questions don't work, there are other ways to tell when a patient is in pain. Dahl says that when patients can't describe their pain (whether because of Alzheimer's disease or other impairments), both family members and medical personnel should watch for other signs of pain, including moaning, weeping, grimacing, tensed muscles, clenched hands, thrashing, inability to sleep, or unusual agitation, she says. If the pain is excruciating, you may need to check with your doctor or a hospice provider about the next step. Hospices provide someone for you to call and talk to 24 hours a day.
Everyone involved in a patient's care should understand that emotions can shape and fuel pain. Anxiety -- certainly a common emotion near the end of life -- can make pain feel especially intense. As reported in the Journal of the American Osteopathic Association (JAOA), anxiety and pain often feed each other in a vicious circle. Patients worry that they won't get enough pain relief at the end of life, and their worries make them more sensitive to pain.
Some patients are also anxious about burdening the family they're about to leave behind. Helen says Walter always enjoyed being the family "fixer" and protector. When she would get worried or worked up about something, he was the one to calm her down and tell her everything would be all right. That might be why he didn't want to talk to her about his pain, she says: It was one last thing he could protect her from. "He knew what was going to happen," says Helen. "He was supporting me to the end."
Family conflicts are another major source of pain -- both physical and emotional. According to the JAOA report, the presence of unsupportive children or an angry spouse can be just as agonizing as anything that's happening in a dying person's body.
While anxiety fuels pain, peace of mind can bring great relief. Family members, as well as doctors, can assure the patient that pain relief will be a top priority. Family members can also work with staff to make sure the patient is as comfortable as possible. Toward the end of Walter's life, when he was unconscious and on an intravenous morphine drip for pain, Helen was able to press a button to deliver more of the drug when she saw signs he needed it.
Most importantly, friends and family need to put any conflicts aside during a person's last days of life. Reassurance and forgiveness are some of the most powerful pain relievers ever utilized.
Doctors can also prescribe anti-anxiety medications such as Valium (diazepam) to calm nerves, or antidepressants such as Prozac (fluoxetine) to lift spirits, if needed. Ambien (zolpidem) can help patients rest through the night, a hard thing to do when nurses are checking vital signs around the clock. Doctors have recognized that anxiety can be a symptom of a treatable physical problem such as low blood sugar or thyroid trouble. In many cases, simply treating these problems will greatly relieve a patient's anxiety.
Whether a patient is in a hospital, a nursing facility, or the family home, there are many options for pain relief. Drugs are only one part of the picture, Dahl says. Ice, massages, music, relaxation techniques, and guided imagery can all help relieve pain and reduce the need for medications. It's worth noting that even the venerable M.D. Anderson Cancer Center in Houston offers massage and acupuncture for pain relief.
The World Health Organization recommends a three-step "ladder" for pain relief in people suffering from cancer. The first step is to use relatively mild painkillers such as aspirin. When this isn't strong enough to control pain, the organization recommends moving on to codeine -- a mild opioid (narcotic). But when pain gets tough, doctors need to move to the third step on the ladder and prescribe the most effective drugs in their arsenal. That means opioid drugs such as morphine. "Opioids are really essential," Dahl says, especially for patients with cancer pain. Opioids can also be effective for treating the pain from damaged nerves -- doctors call it "neuropathic" pain -- that's often associated with diabetes or other diseases that attack the nervous system, she says.
Opioids do more than relieve pain. As reported by the Hospice Foundation of America, morphine can "provide a sense of comfort. It makes breathing easier. It lets the patients relax and sleep." In short, pain treatments help patients make the most of their final days. When pain no longer dominates their lives, they can truly focus on the time they have left.
However, opioids can cause side effects that detract from the comfort. The most common side effects include constipation, nausea, itchiness, and mild sedation. Doctors often compensate for these problems by prescribing extra medications, like stool softeners and gentle bowel motility agents to ease constipation, for example. As reported in the Journal of the American Osteopathic Association, some side effects usually fade after a few days. Constipation is the one side effect that doesn't usually fade, which is why bowel medications are especially important for people taking opioids regularly.
The first attempt at relief -- often morphine pills -- isn't always successful. According to a report in Anesthesiology Clinics of North America, the drug may fail to control pain or it could cause too many side effects. Even if the first or the second or third try doesn't work, relief may still be in sight. Doctors can try different drugs such as methadone, a drug that has a slightly different mode of action than morphine and may work better for some people, or fentanyl, a fast-acting drug that can bring quick relief. Doctors can also try different methods of delivery. If pills aren't working, liquid morphine can be administered through a dropper, and an IV might also be worth a try.
Fentanyl can be delivered through a patch, although safety issues should be discussed with your doctor. Fentanyl can also be prescribed in a lozenge or "lollipop" for quick relief of breakthrough pain, while morphine can be injected near the spine -- a procedure that doctors call an epidural injection. (A caution: Be careful to always lock the "lollipops" away from children -- some have mistaken them candy and have had to be hospitalized.)
In cases of breakthrough pain during hospice, family members taking care of a loved one are not alone. Ideally, hospice nurses will be on call and can make an emergency visit at any time of the day or night, to give an injection of powerful pain medication, if needed, and discuss how to make the dying person more comfortable.
Putting fears to rest
Patients and their families often have realistic fears about opioid treatments, although some are unfounded, Powell says. For one thing, there's no danger that a person taking morphine for pain relief will become addicted to the drug, she says. Addiction is a psychological problem that causes people to crave and seek out drugs that they don't need medically and which they have evidence could be harmful to them. A person receiving morphine for chronic pain near the end of life just doesn't fit the picture.
There is a difference between addiction and physical dependence. People will become physically dependent on these drugs if they take them around the clock -- that means they will have withdrawal symptoms if they abruptly stop taking the drug. But this is also not something to worry about in the case of a dying patient needing pain relief.
Patients can become tolerant of opioids or their pain may get worse, which means they may need increasing amounts of medication to get the same amount of relief. As a result, patients and their family members often worry that using strong medications now will make it harder to get relief down the road. But when a person is in severe pain, as reported in the Journal of the American Osteopathic Association, doctors can always adjust the dose to meet a patient's needs.
Sometimes people think that taking morphine or other opioids is akin to giving up or admitting defeat. However, the primary aim should be to make the patient's final days as pain-free as possible. This isn't giving up -- it's giving comfort.
If every attempt to relieve pain fails, a doctor may suggest palliative sedation. A large dose of drugs will put the patient to sleep, with the goal of helping death to come painlessly. This procedure is rare, and it's never done without full permission of the family and, if possible, the patient. Palliative sedation is not euthanasia, and it is not intended to cause death. It is designed to make the patient unaware and unconscious as the disease follows its natural progression to death. The decision to allow palliative sedation is never easy, even when, as Dahl says, "the alternative is unacceptable suffering."
Some patients decide that they'd rather stay alert as long as possible, pain and all. Unfortunately, many patients don't even know that relief is even an option. "People aren't told what their choices are," Powell says.
When more patients and their families understand their options, and when more doctors make pain relief a priority, more people can spend the last part of their lives in comfort. Dying shouldn't have to hurt.
Interview with Kandyce Powell, RN, the executive director of the Maine Hospice Council
Interview with June Dahl, PhD, a professor of pharmacology at the University of Wisconsin at Madison, and a founder of the American Alliance of Cancer Pain Initiatives
Interview with Helen R.
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