Agonizing Progress : New Options Open for Sufferers of Disabling Pain but the Medical World Slow to Adapt, Critics Say

During 14 painful years, Sylvia Gonzales saw seven doctors and endured nine surgeries in a seemingly hopeless quest to cure the aching back that made her nauseous, robbed her of sleep and confined her to the house.

When the doctors finally told Gonzales she would have to live with the hurt, she learned firsthand what many critics and national studies have concluded: The medical profession doesn’t effectively treat pain.

“They had no idea what to do; they would say, ‘You just have to accept this,’ ” said the 44-year-old homemaker and mother from San Diego County who ultimately found help at an Orange County pain clinic.

Pressure is mounting on the medical establishment to better treat physical pain. And while there are clear signs of progress in Orange County, critics still say not enough is being done to relieve suffering.

“There is a general ignorance about what is available (to fight pain) and resistance to change, not only by doctors but nurses,” said Dr. Harold Docherty, medical director of the National Pain Institute in Huntington Beach, where Gonzales is a patient. “It upsets me when patients are told they will have to live with the pain they have.”

Numerous forces are stirring greater interest in easing pain.

* The Joint Commission on Accreditation of Health Organizations added a new requirement last year for hospitals to provide better pain relief for dying patients, and now the commission proposes to extend the standard to all hospital patients.

* An agency of the U.S. Public Health Service last June issued medical guidelines to hospitals and surgeons for dealing with acute postoperative pain. Later this year, the agency is expected to issue a similar guide for the treatment of cancer pain.

* There is increased activism by hospice workers, anesthesiologists and others with firsthand knowledge about modern pain management to make wider use of new pain drugs and technology.

* Many California voters favor physician-assisted suicide for terminally ill patients. Although a state ballot initiative to legalize such suicide was narrowly defeated last November, the degree of voter support surprised the medical community.

* Similarly, the highly publicized work of Michigan physician Jack Kevorkian, who has helped 15 painfully ill people end their lives since June, 1990--including one from Costa Mesa--has helped push the issue of pain to the forefront.

“I think Kevorkian has done this country a tremendous service,” said Dr. Melvyn Sterling, director of the hospice program of the Visiting Nurses Assn. of Orange County. “He has focused our attention on the anguish of American people as they worry about how they are going to die. It is a wake-up call.”

But the concern over pain is not only about the dying. It is also about the living.

Failing to treat pain is callous and can slow a patient’s recovery from illnesses or surgery, say advocates of pain relief. Pain can suppress a patient’s immune system, promote vascular and lung complications and reduce mobility.

“When patients are hurting, they don’t eat or sleep properly and their immune system falls off,” said Dr. Glen Justice, a Fountain Valley oncologist. “From every level, physical and emotional, if you don’t have adequate pain control, everything falls apart.”

Hospitals, doctors and nurses in Orange County and elsewhere are responding to pleas to stop the pain, although critics say progress is too slow.

“Pain is a disease and people are starting to realize that,” said Dr. Carl A. Hess, director of pain management services at UCI Medical Center in Orange.

Some hospitals are surveying physicians, nurses and patients to see if they have outdated attitudes about pain control. They also are buying new technology to better administer narcotics, and some are developing pain management centers to customize the treatment of post-surgical pain, cancer pain and chronic pain ranging from backaches and shingles to migraine headaches.

“Pain management is one of the big hospital and health care trends of the ‘90s,” said David Langness, spokesman for the Hospital Council of Southern California.

But a key barrier to progress, pain experts say, continues to be misplaced fear about the potential for addiction to narcotics. These experts also say doctors in California are especially cautious about prescribing narcotics because the state requires extensive paperwork.

“I know many physicians who will not prescribe narcotics, period,” said Dr. Steven Hufstedler, an anesthesiologist at Martin Luther Hospital in Anaheim. “They don’t want to get into the regulatory hassle.”

In contrast, hospice workers have discovered that narcotics, when used to treat severe pain in terminal patients, are rarely addictive, said Dr. Paul Coluzzi, an oncologist at the City of Hope and medical director of Community Hospice Care of Orange County.

“In hospice care we learned that patients really want adequate pain control,” Coluzzi said. “We also learned that large doses of medicine are often necessary to control pain. So many people think high doses will render patients semiconscious. But we learned that patients were alert and productive and enjoyed their lives.”

He added, “I don’t know of any patient who got adequate pain relief who has asked for suicide.”

While stressing that oral drugs and other options should be tried first, pain experts also have many examples to show how high technology has dramatically improved the lives of some cancer sufferers.

Janet Oakley, 42, of Irvine, who was hospitalized a few weeks ago with uncontrollable pain from cervical cancer, said the suffering has been relieved by a carefully concocted mix of narcotics and other drugs she receives from Dr. Robert George Olson, director of the Pain Management Center of Newport.

A six-ounce pump the size of a hockey puck has been implanted under the skin beside her abdomen. It delivers a constant dose of drugs through a tube running directly into her spinal column. Her physician can change the dose remotely with the aid of a computer implant that is controlled by radio signals.

A second pump in a pouch at her waist infuses still more drugs into her blood through a major blood vessel in her neck.

Oakley is too weak to return to her former job as a medical transcriptionist at Hoag Hospital and she faces an uphill fight against cancer. But she said she is grateful that she can now do such simple things as play cards, watch television, read, and go out to have her hair and nails done.

“It’s a battle, that’s for sure. But I am a lot stronger from getting relief from the pain,” Oakley said.

Pain management technology has burgeoned in the last decade. Electric spinal stimulators, portable intravenous pumps, long-lasting time-release pills and patches that administer pain-killing drugs through the skin are giving patients with severe chronic or cancer pain enough mobility to live at home and even, in some cases, continue at their jobs.

Yet pain experts within the medical community complain that wider use of these techniques is hampered by the ignorance of many physicians.

“Historically, we as physicians and the patients . . . have been more interested in understanding and treating the underlying disease without sufficient concern over the pain that these diseases cause or we did not recognize chronic pain as a disease itself,” said Hess of UCI Medical Center.

Part of the blame is placed on nursing and medical schools.

“Studies show nurses in four-year programs get about four hours of training in pain management and doctors about one hour,” said Betty Ferrell, a nurse expert in pain management at the City of Hope.

Reform comes slowly.

Dr. Larry Ho, an anesthesiologist at Mission Hospital Regional Medial Center in Mission Viejo, said some staff physicians there still will not use patient-controlled analgesic pumps, although they have been available at that hospital for five years and have proven far more effective than the old-fashioned shots.

“Some (doctors) find new machinery and drugs intimidating,” Ho said. “They want to continue doing what they are accustomed to.”

New drugs and technology are only part of the answer, say pain experts who also advocate a more holistic approach to address the spiritual and psychological aspects of suffering.

A task force put together a few months ago at St. Joseph Hospital to improve pain management there includes, besides a physician and pharmacist, a social worker and chaplain.

“There is a growing realization in the medical community of the great interplay between body, mind and spirit,” said Jane DuBois, the chaplain on the team. DuBois has found that some patients endure needless pain because they believe it is atonement for sins.

Pain experts say while post-surgical pain gets more attention, people with chronic pain that is not caused by a life-threatening disease are most apt to be neglected. They frequently travel from specialist to specialist without finding sufficient help.

In the process, many chronic pain patients become dependent on drugs that undermine the body’s natural pain-relief mechanism, said C. Philip O’Carroll, a Newport Beach neurologist who has become a specialist in treating headache pain.

“Doctors have over-treated chronic pain and under-treated acute pain,” contends O’Carroll, who said he often has to wean his patients off a mountain of pills.

He said he tries to control pain by using a minimum of drugs combined with physical therapy, relaxation techniques and counseling to deal with such pain enhancers as stress from jobs, spouses, money and psychic wounds from the past.

But when all else fails, technology can sometimes do the job.

A few weeks ago, George Neal, a 45-year-old cancer victim from Tustin, was outfitted with a portable pump that is computer-programmed to administer a high hourly dose of morphine into his body through a needle just under his skin.

Although close to death, Neal got enough relief from the pain so that he could organize his fishing gear, take short walks and eat at his favorite Chinese restaurant with his wife.

Neal’s courage is proof that bearing pain is more than relying solely on technology and doctors. “You have to put both thumbs up and say go for it,” he said with a smile.

And Sylvia Gonzales, whose aching back had sapped all her energy, has finally found peace.

With the help of a morphine pump implanted in her body, her pain is alleviated enough for her to enjoy life, even to take a trip to Maui, Hawaii, recently with her daughter.

Anatomy of Pain

Pain exists primarily to provide a warning of possible injury or to caution against repeating an action. However, certain diseases, such as cancer and arthritis, may cause chronic pain that has no apparent function. How the pain signal travels: *1. Special nerve endings in skin called nociceptors are stimulated. Cutting, exposure to intense heat and pressure are some stimuli. *2. Follows nerve pathway to the spinal column. *3. Proceeds instantly to the sensory cortex of the brain; now pain is perceived. *4. Passes to a motor nerve connected with a muscle. Muscle contracts, moving the body part away from pain source. *Sources: The National Pain Institute, American Medical Assn. Encyclopedia of Medicine; Researched by CAROLINE LEMKE / Los Angeles Times *

New Methods of Treating Pain

Transdermal patches: A Band-Aid-like patch that continuously releases medication through the skin and into the bloodstream. Lasts two to three days. Good for treating most pain and frees the patient from intravenous tubes.

Continuous subcutaneous infusion: A tiny needle is taped into place under the skin. It’s connected to a pump about the size of a Walkman that continuously releases pain medication.

Nasal spray: Drug is sprayed into nostrils and absorbed rapidly through the mucous membranes. The treatment is used mostly for migraine headaches.

Spinal stimulators: Small electrodes implanted near the spine are connected with a battery-operated power box the size of a pager. Patient controls electrical pulses to the nerve pathways in the spine, reducing the pain while causing a slight tingling sensation. A small computer in the power box can be remotely programmed to give more or less stimulation.

Spinal pain medication (two methods):

1. A catheter is placed just outside the spinal fluid compartment. Drug is infused into the catheter by a syringe or an automatic pump and absorbed through a membrane into the spinal fluid. Used primarily for short-term pain during childbirth and after surgeries.

2. Catheter attached to a pump is placed directly in the spinal fluid compartment. The pump can be carried on the outside of the body or implanted under the skin and can be remotely programmed. Used mostly by cancer patients.

Source: Dr. Robert George Olson, Pain Management Center of Newport Beach

Los Angeles Times

* HELP FOR PAIN

Pain management gets attention at new hospital clinics. B3