WHEN LIFE IS PAIN
Ways to ease our loved ones' anguish.
BY:DEBORAH HARKINS
The agony inflicted by certain cancers is legendary, capable of devastating both the patient and his family. Yet, studies show that undertreatment of cancer patients’ pain is a prevalent problem, just as it is for those battling pain after surgery, because of AIDS or from advanced illnesses. “Chronic pain is an enormous public-health problem that has a high impact on people’s lives,” notes Russell K. Portenoy, MD, chairman of the Department of Pain Medicine and Palliative Care at New York’s Beth Israel Medical Center. “All pain is treatable to some extent. But the reality is that a very large proportion of patients endure persistent pain severe enough to at least partially disable them.”
Diane Meier, MD, a geriatrician and expert in pain management who directs the Center to Advance Palliative Care at New York’s Mount Sinai School of Medicine, says that until recently doctors paid little attention to the problem of pain. During her medical training in the 1970s and ’80s, declares Meier, she received not one lesson on pain management.
Now, Dr. Portenoy notes, hospices are “very attuned to the importance of symptom control” and the ranks of pain specialists are growing. Thousands of neurologists, anesthesiologists, psychiatrists, and physiatrists in the U.S. are becoming certified in pain medicine by the American Board of Medical Specialties or by the American Board of Hospice and Palliative Medicine. Even so, he states, “access to sophisticated pain treatment is markedly limited in the United States.”
That’s why patients and caregivers need to be well informed and proactive. “Bring pain to the forefront when talking to your doctor,” urges Myra Glajchen, DSW, who directs Beth Israel Medical Center's Institute for Education and Research in Pain and Palliative Care, a New York-based specialty clinic. “Physicians may not raise the subject of pain if the patient or family does not.” As a caregiver, she adds, you should “tell the doctor about changes you’ve noticed that may indicate the patient is in pain—sudden difficulty in getting up, for instance, or a change in gait. [See box: Seeing Their Pain, page XX.] If your visiting nurse doesn’t seem adequately informed about pain, call your home-care agency and ask for a more qualified nurse practitioner. And, if your doctor or nurse could use guidance with the pain-treatment plan, request a consultation with a pain specialist or pain center.”
Dr. Portenoy agrees. If the hospital treating your relative has no attending physician who’s a pain specialist, he says, you’re entitled to call in a specialist of your own. He urges patients and caregivers to “assertively demand better pain management.”
MERCY IN ACTION
Only 22 percent of U.S. hospitals have available a palliative-care team—including a doctor, nurse, social worker and psychiatrist, and possibly a pharmacist and clergyman—trained as specialists to focus on relieving pain and other distressing symptoms of serious illness, such as agitation, nausea, constipation, fatigue and breathlessness.
Such teams coordinate wide-ranging care provided by multiple specialists who reach out to the patient’s family, listen to their concerns and suggestions, and keep them informed about the patient’s care. They are proficient in managing pain with both medication and complementary therapies like acupuncture. However, when pain management is particularly difficult, they will call on a pain-care team or specialist. These experts focus particularly on acute or persistent pain and effectively utilize special interventions such as nerve blocks and morphine pumps.
THE PAINFUL FEAR OF ADDICTION
One pain-treatment barrier is doctors’ reluctance to provide heavy doses of opioid drugs such as morphine. Sometimes, the doctor fears the onset of patient addiction; other times, doctors fear investigation by federal, state or local agencies. These fears are reasonable because of strict and restrictive governmental oversight regarding the prescribing of opioids.
In 2002, the American Geriatrics Society conducted an extensive review of the medical literature on the treatment of persistent pain—formerly the more negatively interpreted chronic pain—in older adults. The resulting AGS report noted that the use of opioid analgesic drugs for non-cancer pain is still controversial, acknowledging that “reluctance to prescribe these drugs has probably been over-influenced by political and social pressures to control illicit drug use” and declaring “the incidence of addictive behavior among patients taking opioid drugs for medical indications appears to be very low. . . .This does not imply that opioid drugs should be used indiscriminately, but only that fear of addiction and other side effects does not justify failure to treat severe pain.”
Dr. Portenoy, who is also a professor of neurology and anesthesiology at Albert Einstein College of Medicine and past president of the American Pain Society, as well as editor of the Journal of Pain and Symptom Management, states, “Opioid drugs are considered to be the first-line therapy for the pain of cancer, advanced illnesses of other types, and acute pain after trauma and postoperative pain.
“If a patient has cancer pain or pain due to another advanced illness,” he explains, “opioids should be given early and aggressively. For other kinds of pain, opioids are an option, but more controversial.” He points to opioids’ major side effects—constipation and mental clouding—and notes that “the chances of addiction are not zero. The likelihood varies from person to person, depending on genetics. If a person has no prior history or family history of substance abuse, the patient’s chance of addiction appears to be very small. But the physician must be concerned if the patient has a prior history of substance abuse, including alcohol abuse. Should a person with such a history need pain medication, the doctor must intensify monitoring and check for indicators of drug abuse.”
The AGS website notes, “In one study in which over 12,000 medical records were examined, only four cases of narcotic dependency produced by medical treatment were found.”
If he’s 70-plus, the patient himself may be a stumbling block to assuaging pain; their upbringing taught members of this generation to be wary of taking medication. Geriatricians—doctors specializing in treatment of the elderly—understand their “I can take the pain” mindset. These specialists make good primary-care providers because they are knowledgeable about how older people’s bodies process drugs; alert to the progress of dementia; and trained to spot late-life depression, which often is mistaken for dementia in seniors. To find a nearby geriatrician, call (800) 247-4779 or visit the AGS website at www.americangeriatrics.org.
DESPERATE CASES
“Not all pain can be eliminated,” acknowledges Dr. Meier, “but no one needs to be in extremis.” For the caregiver without a pain specialist on her side, it is empowering to know the history of doctors’ reluctance to give high doses of opioids and that a firm stand against this reluctance must be taken.
The fact is, sometimes a doctor’s treatment decisions simply must be overruled. Dr. Meier points to the case of “Ellen,” a 24-year-old leukemia patient whose pain, nausea and anxiety were so acute that she could not eat, drink or sleep.
Ellen’s internist prescribed medication incorrectly, giving her every-six-hours doses of a medication whose effectiveness lasted only three hours. And so, Dr. Meier says, “after three hours, Ellen’s pain would come roaring back. For the next three hours, she’d go from pushing the call bell to moaning to screaming.” To worsen matters, her family’s trust in the doctor added to her frustration and sense of isolation. “If you get the drug more than every six hours, it’ll become a habit,” they told her. “You’ll have to grin and bear it.”
Finally called in by Ellen’s internist, Dr. Meier’s team ordered that the drug be given with the appropriate dosages and timing, plus “rescue doses” whenever needed. Within two days, Dr. Meier says, “Ellen was quite comfortable.”
Family members dissatisfied with a doctor’s treatment of their loved one’s pain can ask to speak to the hospital’s patient representative, the risk manager, or reach up to the hospital administrator’s office. But, first, they should confront the doctor.
“The family should insist on speaking directly to the doctor,” Dr. Meier says. “Then evaluate whether his justification for undertreatment seems appropriate. If [the patient and caregivers] are dissatisfied, it’s their obligation to change doctors or call in a pain specialist.”
FINDING A SPECIALIST
To find out if your hospital has a palliative-care team, go to the hospital’s website and type in palliative care. If nothing comes up, call the hospital’s department of medicine and ask if it has a specialist in palliative care or pain treatment. If they have no pain specialist or palliative-care team, ask your primary-care physician for a referral. If, however, you choose to do your own research, here are steps you can take:
Use the free service offered by the American Board of Medical Specialties. They do not give referrals, but its website (www.abms.org/login.asp) allows you to search for a pain specialist by city or state. Look for a doctor who is board-certified in pain medicine. To get further specifics—including the doctor’s office phone number—use Google. Plug in the terms “American Medical Association” and “DoctorFinder.”
Go to the Center to Advance Palliative Care website, www.capc.org. Click “Program Directory” under “Find Palliative Care,” which leads you to a national directory of hospital palliative-care programs. The center’s director, Dr. Meier, cautions that the list is not comprehensive.
Visit the American Board of Hospice & Palliative Care website at: ww.abhpm.org/Locator.aspx. This non-profit organization sets standards for physicians specializing in hospice and palliative medicine. Search by city or county to find a local, ABHPC-certified diplomate.
To help terminally ill patients, client-support counselors at Compassion & Choices—a nonprofit organization based in Denver, Colorado, and Portland, Oregon—will make local referrals to pain specialists and hospice programs. Call (800) 247-7421 on weekdays during business hours, Pacific time.
Not all specialists are made the same,” cautions Dr. Portenoy. “Some are interventionally oriented, tending to use injections and nerve blocks. Some are more medically oriented, prescribing pills. Yet others are focused on psychological and rehabilitation techniques.” Ask the referring doctor whether the specialist’s treatment methods are appropriate to the patient’s condition. Then ask the specialist whether he has experience with the patient’s specific problem and is part of a sophisticated and multidisciplinary pain program, which is the ideal scenario.
There are many clinics and hospitals across the nation sophisticated in the treatment of pain. But, if the patient lives in an area lacking a pain clinic or specialist, his doctor or nurse may be able to consult by phone with a professional in a treatment center in another area, although patient-confidentiality rules may preclude that. If the patient can travel to an out-of-town treatment center for a one-time consultation, that center’s staff can thereafter work with the patient’s doctor and nurse to implement a treatment plan.
SEEING THEIR PAIN
Caregivers provide a particularly vital service, declares Myra Glajchen, a doctor of social work at a New York pain clinic, “because they can tell the doctor about symptoms he or she would never pick up on. Caregivers are so attuned to the patient’s behavior under normal circumstances that they detect even subtle changes.” This is particularly vital when the patient has dementia or finds it hard to communicate.
Help in recognizing non-verbalized pain signals is available online at the American Geriatrics Society Foundation for Health in Aging website, www.healthinaging.org/agingintheknow. Click on “Topics at a Glance,” then “Pain Management,” then “Chapter 11—Pain.” This site covers when to get professional help and treatment of chronic pain, explains how to interpret non-verbal signs of pain and suggests how to most effectively pass this information along to the doctor. The site also includes a detailed PDF, “Medications for Persistent Pain,” at www.healthinaging.org/public_education/pain/