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Newsletters: Oley Conference Day Two
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Oley Conference Day Two: Who Is Shaping Your Future on HPEN

Linda Boutin, HPN Consumer, Regional Coordinator

The second plenary session, “Sailing Into the Future...Who Is at the Helm?” began with facilitator, Sheila Messina, RN, MA, introducing David Smith, MD, a specialist in chronic pain management. The title of his talk, “Maintaining Control in the Presence of Chronic Pain,” sent a shiver down my spine. Chronic pain has been a part of my daily life for the last two decades and I wasn’t looking forward to what he might have to say.

Fortunately Dr. Smith put me at ease immediately by pointing out how widespread chronic pain is in the United States. He said 70 million people suffer with back pain including 10 to 15 percent of the working population. Also 36 million people battle arthritis which I’ve witnessed in both my husband’s and my families. As a result, 50 to 70 percent of chronic pain patients suffer primary or secondary depression. But most unsettling of all of Dr. Smith’s statistics was that patients removed from the work force for over one year have only a 10 to 20 percent chance of returning to work.

Next Dr. Smith pointed out that pain is a subjective and an emotional experience. No two people will experience pain in the same way. He also said that addiction is different from dependence upon pain medication.

He outlined the goals of a pain treatment center as:

•  to detoxify the patient from medication;

•  to reduce, but not eliminate, pain;

•  to increase functional abilities; and

•  to interrupt pain behavior and reward healthy behavior.

According to Dr. Smith, a team approach is needed for a successful chronic pain program. The team should be composed of members from psychiatry and psychology, pharmacy, anesthesiology, physiatry (a physician who specializes in physical medicine), neurology, physical therapy, and nursing.

During the acute stage of treatment the team will look for the pain generator. Diagnostic tests will be used to pinpoint the cause starting with X-rays, and moving through a series of tests including EMG, NCS, bone scans, MRI, cat scans and myelograms. Once they’ve pinpointed the cause of pain, the team will determine the ascending pain pathways. They do this because the central nervous system has structures that can modify the ascending pain pathways, allowing the patient’s interpretation to alter the pain experience. Other ascending influences can also mask the pain experience including biofeedback, hypnotherapy, sound therapy and spinal cord stimulation.

Another problem in treating pain which Dr. Smith raised, was that the motor nerves, sensory nerves and autonomic nerves can scar between nerve fibers. Particularly in the case of the autonomic nerves this can set up visceral pain once the nerves are severed in surgery. Unfortunately the scars from bowel surgery can cause chronic visceral pain which can be very difficult to deal with.

Dr. Smith said dealing with chronic pain is very different than dealing with acute pain. In the case of acute pain the patient knows there will be an end to the pain which makes it more bearable.

He demonstrated the complexity of dealing with pain through two charts, the first of which showed the psycho-social impact of pain. In this chart the patient is in the middle of nine elements which can influence his or her ways of dealing with pain. These nine elements include the physical facilities, emotional stressors, family, environmental stressors, problem solving and coping skills, motivation for wellness, level of conditioning, intellectual resources and spiritual values. Any of these can add to or reduce the individual’s pain experience.

In the second chart nocioception (pain stimulus) is in the center of four circles. Surrounding this circle is a larger circle called pain. Around pain is a larger circle called suffering. And finally surrounding suffering is a circle titled pain behavior. Part of the pain behavior includes fear that the pain may be life threatening. What blossoms out of these circles is chronic pain syndrome.

Pain treatment teaches the patient special methods or algorithms for solving their particular kind of problem. After the appropriate diagnostic tests have determined the history, diagnosis, length and type of disability, then a program can be recommended to cope with an individual’s particular needs. This can include everything from rehabilitative exercise programs to new medications like Ultram - an oral, single entity, centrally acting analgesic antinocioception - or Phenteno patches which last 62 to 72 hours. In the case of a patient with a malabsorption disorder who has visceral pain resulting from nerves cut during surgery, intravenous pain medication may help.

As I listened to Dr. Smith explain visceral pain, I gained an increased understanding of why the battle for dealing with pain was so difficult in my case. I’ve had five major abdominal operations which left scars criss-crossing in all directions up and down my abdomen. Despite my apprehension over this speaker, I felt his part of the discussion ended too soon.

After Dr. Smith finished, Sheila Messina introduced Cathy Bey speaking about “Charting the Course: Playing an Active Role in Your Care.” I felt a special empathy with Ms. Bey who also has pseudo obstruction. She has been on TPN for 23 years and earned her bachelor’s degree in psychology and criminology. She is now an independent medical logistics consultant.

Ms. Bey said, “I consider myself a very lucky person because I’ve had pseudo obstruction since birth.” She explained that she’s never known anything else, and more importantly, that her illness has taught her to live every day to its fullest because tomorrow she might not be feeling well. Her energy and enthusiasm is evident not only in her speech, but in the fact that she had been traveling almost two months and over 6,500 miles when she arrived at the conference in June. She drove down the coast to San Diego all the way from Vancouver, British Columbia. Although it’s a little more difficult to drive, she finds it’s much cheaper and a lot more fun.

According to Ms. Bey, she has a great family, a great set of friends and a wonderful husband, Eric, who together form an excellent support network. With this support network behind her, she has managed to play an active role in her health care. Even as a child her parents gave her a measure of control and allowed her to be a part of her treatment. Everything was explained and discussed with her. This helped her develop trust with her doctors and gave her a sense of control in her life. She said she’s had to fight for her rights as a patient, and that sometimes she’s relied on her parents or husband to assume control when she was unable to do so.

Her husband Eric has learned a lot about pseudo obstruction and TPN in the three years they’ve been married. He even got to participate in the surgery to implant her last catheter.

Ms. Bey stressed patients’ need to “Ask questions!” She recommends finding out everything about your procedures, options and what the long-term consequences would be. “Don’t make decisions if you don’t understand a procedure,” she warned. “And don’t let anyone make decisions for you. Sometimes you must force a doctor to learn about a procedure.”

She also advised never letting anybody say you can’t do something. Despite some disbelievers, she competed in and coached competitive gymnastics, for example. She attributes her success to her parents, education, sisters, friends, specialists, and home care company, Caremark. She also expressed thanks to the conference sponsors. “The Oley Foundation has been a savior. Reading the newsletter has been a godsend.”

Ms. Bey is from Vancouver, Canada, and later explained how the Canadian system has worked for her. In British Columbia, TPN is administered through the Kidney Dialysis Service (KDS), a government agency. They in turn subcontract her care to her homecare company. Her homecare company is given a list of supplies, provided by each of the training hospitals and authorized by KDS. There is no choice as to what can be ordered. Requests for supplies not on the list requires a fairly lengthy process through both the hospital and KDS, making it difficult but not impossible to get additional supplies. She emphasized that necessity is the mother of invention and she explained how she has found many innovative ways to solve day to day problems. As she put it, “Where there is a will, there is a way.”

She said it is important for consumers to contact manufacturers. If you go and visit the manufacturer, the workers are able to see that the catheters, pumps or whatever they are making are important to real live people. This lets them know that their work has an important and lasting influence on a person’s life.

Ms. Bey’s vitality and positive attitude was contagious and very uplifting to everyone who listened to her speak. I was happy to get the chance to meet someone who had overcome so much to build a successful life.

To wrap up Friday’s Plenary Session, Sheila Messina introduced Don Young, president and consumer affairs advocate for The Oley Foundation, to speak about “Who’s at the Helm - You or Your Insurance Company?” He said that in the past one out of every three complaints called into the office were concerned with reimbursement. Now two out of every three are.

He had five recommendations for dealing with insurance companies. Number one, and it would seem to be obvious, don’t let your policy lapse. If you don’t get a renewal notice, pay the bill anyway. Call to find out the status of your policy and get everything in writing. Second, respond to any insurance plan change. Third, prepare for the day your insurance may reach its cap. Don’t keep your head in the sand thinking you’ll never spend your million or even three million dollar cap in medical costs. Fourth, remember if you change jobs, your insurance may not be portable. COBRA allows you to purchase insurance for a specified time, but it may be too expensive for you to maintain. Fifth, take a hard look at whether you need to apply for Social Security Disability. Don’t wait until the last day you work to apply because there is a 30-month wait for Medicare.

Mr. Young did have some solutions for last resort help if you lose your insurance. For example, many states have catastrophic illness insurance laws. Generally if you can’t purchase insurance or it costs more than catastrophic illness insurance, you may be eligible to apply. This is a hit or miss situation, however, because some states have never funded such insurance, or once had it but have now dropped it. To find out if your state has this coverage, call the state insurance commissioner or ask the department of state.

A second option may be Medicaid which can be wonderful if you live in the right state. New York for instance has a more generous and flexible Medicaid program than other states. Remember, you don’t have to remain in a state that has a limited Medicaid program, such as Texas.

Another recommendation Mr. Young had was to purchase an Accident and Sickness insurance policy. Many different policies are available that offer such benefits as collection when policy holder is hospitalized. You may have to be free from hospitalizations for one year before they will cover for the same illness or condition. They are typically sold through credit cards and newspaper supplements rather than through insurance agents. Before purchasing a policy, it is a good idea to check out how long the company has been in business and how it rates compared to other insurance companies.

“It’s easy to give up when we reach dead ends,” Mr. Young said. “Anticipation of financial ruin can have catastrophic effects on health. When you look way into the future, you may have to change some ideas and things you’ve thought. But remember to play by the rules. Be alert and look to the future.”

Two main issues were raised in the question and answer session following Mr. Young’s discussion including both the Accident and Sickness policies and how to go about choosing a good pain specialist. Dr. Smith said to look for a tertiary comprehensive pain treatment center, for conservative treatment as part of the regimen with 24-hour coverage, and board certified physicians. Run for cover if their first suggestion is to insert an infusion device as a course of treatment.

To get a more complete idea about what happened in the Plenary Sessions, you will want to review the video tapes from the conference. (Call 800-776-OLEY for ordering information.) But to get the very most out of the program, I find it’s best to attend in person where you have the opportunity to ask the questions on your mind.


Copyright © 1995 The Oley Foundation

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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