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Oley Conference Discusses Ways to Cope When “There’s An Elephant in Your Living Room”

Facilitator: Lyn Howard, MD, Albany Medical Center, Head, Division of Clinical Nutrition; Co-founder, Oley Foundation

Speakers: Richard Fleming, MD, Mayo Clinic, Jacksonville, FL; Sheila Messina, RN, MA, Homecare Consultant, HomePEN Consumer

When homePEN becomes the proverbial “elephant in your living room,” you can spend all of your energy trying to get rid of the beast, or alternatively, learn how to make it more manageable. In this interactive session we will address some difficult issues for people who are on long term nutrition support.

Question 1. An HPEN consumer is not comfortable with their supervising physician and would like to change physicians...What can the consumer do in this situation? What information should they take for a consultation with a new physician? What questions are important for the consumer to ask? and How can the Oley Foundation and other consumers help?

RF: I believe that all HPEN patients need a physician in their community whether it’s an internist, surgeon or family physician. If you are fortunate enough to have that person managing your TPN in your community then you can often have them double up as your primary medical provider as well.

If you encounter a situation where you are uncomfortable, I don’t think a patient should hesitate to consider changing physicians or at least to request a second opinion. As far as what information you need to take another physician for a second opinion, I think everyone who is on HEN or HPN needs to have a two page summary of your health care history. A summary will also be helpful to take to a physician seeing you in the emergency room.

Will seeking a second opinion in any way jeopardize your care? It shouldn’t. I find that most physicians who don’t take care of many HPEN patients welcome second and third opinions from people who are more involved in the complications, the indications and the new developments occurring in patients with short bowel syndrome, motility disorders and Crohn’s disease. I often see patients who have been sent for second and third opinions, and most of the time it’s a very open communication between the physicians sending the patients and those of us who are seeing them.

SM: I would add that if you’re wanting to change your physician, then try to do it at a time when you are not in crisis. When you’re in the hospital with many complications is not the time to make that decision. This discomfort is often a build up of things. When you experience that, and are in a ‘well’ state, I would suggest that you start looking for someone you can talk to, like a case manager if you have managed care coverage. You don’t want to pour out your troubles to a new physician on a first appointment without having discussed your thoughts out with someone else first.

As far as a summary, I have a sheet that’s available for anyone new who might see me. It lists my diagnosis, the dates that major events occurred and what I am currently on. I think it’s a very helpful tool that saves time and confusion.

LH: How do we know if the physician is experienced?

SM: I would try asking the nearest Oley Regional Coordinator or other members of your homePEN or disease-based support group. You may also call your local medical society or try using the internet.

RF: I suggest asking other physicians in your community who may know something about the specialty. A more direct approach, if you’re given a name, would be to call that physician and question their background, interest and knowledge. It’s not unusual for patients to call out of the blue and for me to talk to them for 10 or 15 minutes to learn something about their history, and to share with them my background and interest. Then we can determine whether it would be worth their while to see me.

LH: You can also call the Oley office for the listing of programs who participated in Oley National HomePEN Registry. It lists programs and physicians well versed in nutrition support issues.

Audience: I am a nurse, but I am also the mom of a child who has short bowel syndrome and is TPN dependent. When I took this little boy home as my foster child, he was very nutritionally deprived. He had been managed by the surgeons in our area, but he was below the 5th percentile for height and weight, he was vitamin deficient, he had no hair, and so on. I started reading the nutrition support journals, including the Journal of Parenteral and Enteral Nutrition, and kept finding Dr. Marvin Ament’s name. So I called the hospital where he works and asked to talk to a nurse. I think nurses are good resources as far as telling you which doctors have the best bed side skills, the best technical skills, and are the most knowledgeable and compassionate. This nurse told me about another homePEN expert within a few hours drive of my home. My son came to life under this physician’s care. He is now in the 95th percentile for height and weight, 8 years old and very active. So I just want to encourage you to talk to a nurse or even other patients, because you can learn a lot from them about physicians.

Audience: I’ve called around to try to find a new family care physician. What happens when they flatly refuse to accept you because you are too much of a risk to them and they are not that knowledgeable about your condition?

RF: Your descriptor is not an uncommon one, but I think you have to keep it in context. The medical needs of the patients in this room are so much greater than someone of that training and interest can provide. That’s not to say that that person can’t be part of the total care team for an HPEN patient, but much depends on what’s available in your community. If you’re from a small town, a long way from a major health center, seeing an expert requires a lot of travel. Obviously if you’re from a metropolitan area where an HPEN expert works, it’s easier. But I think that a general internist, a gastroenterologist, a surgeon -- someone with more expertise and comfort with the management of catheters and HPN metabolic problems should be part of that care.

Audience: I am a pediatric nurse with a foster child who has been on hyperal since birth. I have a wonderful pediatrician, but he is not an expert in this condition. He sent me here to find us help. My child is on TENN-Care in Tennessee and they won’t pay for any other care and I can’t afford it. What I need to know is whether a physician with long term experience in managing HPEN would be willing to consult from a relatively long distance?

RF: With some qualifications, I would say yes. I think sometimes you can make mistakes unknowingly if you’re analyzing laboratory work long distance without having the opportunity to examine the patient, and discuss the situation with the patient and parents face-to-face. If possible, it is much better to have a physician who is actually seeing that patient periodically. Once patients are stabilized, of course, the lab work and visits should be less frequent.

Audience: I’m the mother of a 7 year old son with short gut. When my son was three, we were forced by my husband’s company to relocate in order to have insurance. We had capped out. The medical care we now receive is inadequate. I am determined to get decent care, but the physician we want to go to is not in our plan. In order to get better care, I will have to personally petition the president of my husband’s company. I am going to need a lot of documentation to support my request that they put us back on the original insurance.

I have also had an insurance company deny payment for laboratory work. So I called the legal department where my husband works and that got the insurance company moving. They did not want to loose the company’s account. To get the documentation we needed, we paid out of pocket to go to the Mayo clinic and got a four page recommendation on the care my child needed. I also went to a pediatric gastroenterologist in Atlanta for another opinion. I have found that documentation is absolutely critical when dealing with insurance companies.

LH: Is there anything you would add to this Sheila?

SM: The key is to get documentation in a manner that does not set you up as an adversary to the people that you need the information from -- especially as you are trying to get your foot in the door. You will get a lot further if you speak in an understanding voice. One thing I do is have someone who is not involved in this situation who I can call and scream at. It also helps me to remember that everybody has a boss. Just keep saying, “If you can’t help me, who might be able to help me?” And don’t judge the person they send you to. You might not think they are the person you need to speak to, but someone with the answers is out there.

Question 2: Next we are going to talk about the process of switching from TPN to enteral nutrition. This can mean a lot of diarrhea, and months of adjustment. With this in mind, what are the legitimate reasons why somebody might switch from parenteral to enteral? How can other consumers help in the transition? If after trying enteral therapy for six to twelve months the individual feels that they are not doing well, do they have a right to return to TPN?

RF: There are some patients who obviously will never be able to maintain their nutrition either with food by mouth or food by tube. Then again, there are many patients who clearly need HPN just after surgery or after a major flare of their Crohn’s disease, but later could be converted to enteral nutrition. There are many reasons why enteral nutrition is better than parenteral nutrition. It’s safer, it’s more physiologic, it’s one tenth the expense, and it usually provides a better quality of life.

Most people now believe that it’s 18 to 24 months before the human small bowel will maximally ‘adapt,’ increasing in length, diameter and surface area, which will increase its efficiency in absorbing nutrients. So even though you have tried going on enteral in the past and found you had diarrhea, you should be willing to try it again later when your bowel may very well be better able to absorb nutrients. If you do try and fail, of course you have the right to go back on parenteral nutrition. The problem many times is how to decide when to stop TPN when you’re introducing enteral nutrition. You’ve got to realize that when treating patients with gut failure, we are at a disadvantage. Unlike kidney and heart specialists, we don’t have an objective measurement to tell us how bad the gut failure is. It’s more trial and error, and realizing that with time the gut function will improve.

LH: Sheila, where do you think the consumer stands with all of this?

SM: Many times when switching a patient from parenteral to enteral, I think the physician tends to cut the TPN off way too soon -- some times even cold turkey. Without a period of adjustment to enteral, the switch may be doomed to failure. On the other hand, I think the consumer needs to remain an active participant in their care. It’s one thing to go in to your doctor and say “This enteral isn’t working, I’m going to the bathroom umpteen times a day, put me back on TPN.” It’s another thing if you are able to bring in documentation. Set up a notebook for yourself indicating the number of bowel movements you have per day and what kind of response you are having to the enteral feeds on a daily basis over a period of time. You should also monitor your weight level. This way when you come for your appointments, instead of just saying this isn’t working, you have something on paper that shows this is or isn’t working.

LH: Dr. Fleming, can you outline some of the factors that would indicate a switch should be considered? And what is available to help with the diarrhea?

RF: First you need to know what that patient’s anatomy is, including the health of the remaining bowel. From that one can usually predict whether that remaining gut is going to allow one to feed enterally. As far as clues that provide optimism, if someone has been on HPN and has been very stable on the same formula for a long period of time and then starts gaining weight -- that obviously is one indication that the bowel is adapting.

To help control the diarrhea in enteral patients, you first need to document the frequency and preferably the volume of diarrhea. To slow that diarrhea, there are anti-motility drugs that can be used. You start with the simplest and safest and if necessary work up to the more complex, even injectable medicines that can be given. There are oral electrolyte solutions that can help to decrease the diarrhea. There are also new and exciting ways that we may be able to slow transit through the bowel. For example, using fat before meals to slow the rate of gastric emptying.

LH: What suggestions do people in the audience, who have been on enteral, have for others who may be guided in that direction?

Audience: I was on enteral for a year, was failing, and went to TPN. It was a very difficult transition for me. In the time that I’ve been on TPN, we off and on try enteral. It may be successful for a few months, allowing me to taper down my TPN. The best way for me to do enteral, is to do both therapies at the same time.

LH: So even if you can’t switch completely to enteral nutrition and need IV support two or three times a week, relying chiefly on enteral may be sensible.

SM: You mention the fear of going from one therapy to the other. I think that’s what often happens when someone on parenteral is told they are going onto enteral. We don’t stop to work through that fear of, “Oh my God. They are taking away my lifeline. How will I survive?” That fear can contribute to failure of the transition.

Audience: I was on TPN and I couldn’t tolerate the line. So I switched to enteral feeding and I’m doing fairly well. I don’t have a problem with diarrhea but rather the opposite. I can go a whole month without moving my bowels, then I end up in the hospital with blockage and they basically starve me. Does anyone else share this problem?

Audience: I have the same problem where my motility is extremely slow. In fact, I’m beginning to wonder if I should consider TPN?

LH: Unfortunately, most patients with motility disorders find that their condition gets progressively worse. So while tube feeding may work initially, TPN may have to be considered at some point.

Audience: The other problem I’ve been having is that my jejunal feeding tube keeps falling out. I had this one in 10 weeks and then three days ago it was gone.

RF: We have found it’s easier to use a combined gastric tube with a jejunal extension than a jejunal tube alone. It’s easier to anchor and maintain. These gastro-jejunostomy tubes have a tube that’s placed in the distal stomach and a second tube that reaches beyond the ligament of Treitz. Some of these tubes don’t extend far enough into the small bowel and flip back into the stomach very quickly. In fact, many times the feeding tube doesn’t even get past the first loop of the duodenum. But there is one particular tube that we’ve had a lot of luck with, where the jejunal extension is about a foot longer than the jejunal extension on other tubes.

Audience: Is it beneficial to use the G-tube as a stomach emptying or relief valve for excess stomach acids? Does this aid jejunostomy acceptance?

RF: So much depends on the disease. If there is a problem with retention of gastric secretions, or inability for the stomach to empty properly and project food and liquid forward, then that’s a good reason to put a gastric tube in. In many patients with motility disorders, we frequently end up putting in a G-tube in for decompression. If there is any possibility of using the small bowel for feeding, we’ll put the G-J tube in with the hopes of decompressing the stomach when the patient becomes symptomatic and feeding through the distal port. But many of these patients end up on TPN as their gut disorder worsens.

LH: I want to add that it’s very easy to lose your jejunostomy access. So if you have an established J-tube in and it falls out, you should wash the tube off with soapy water, rinse it and then gently reinsert it before going to the emergency room. At the hospital they can determine whether you’ve got it back in the right place. You have to move pretty quickly, because jejunostomy openings can close in a matter of hours.

Audience: Will switching to enteral feedings help with infections?

LH: Data collected by the Oley Foundation shows that you will have half the number of hospitalizations related to your therapy on enteral than you will with parenteral. It cuts down greatly on the number of complications.

Audience: To start enteral feedings, how much small bowel do you need?

RF: It depends on what section of bowel is remaining and how healthy it is. There is a so called ‘rule of 100 centimeters’ suggested in the literature. The rule says that if you have 100 centimeters of small bowel with an end jejunostomy, there is hope for you to transfer from HPN to EN sometime in the future. Or, if you have 100 centimeters of total bowel length, meaning 50 centimeters of small bowel and 50 centimeters of colon, there is also a reasonable hope that you could maintain yourself on enteral nutrition.

Question 3: It’s the consumer’s opinion that they might be able to take a night or two off from nutrition support. What has to be in place for this to be a consideration? What needs to be monitored as you start taking off a night here and what would tell your physician if this is working safely? And if you were trying to get a patient off TPN, would you send that patient to the Nutritional Restart Center?

SM: Usually when someone wants a night off or to spend less time on their therapy, they’ll speed up the rate of their infusion way over what is prescribed, thinking that if I don’t see any adverse reaction then I can continue to do this without telling anybody. That is not the way to go. The second thing that occurs is a fear that if I can take a night or two off, maybe that means I don’t need the TPN and they are going to start taking it away. However, just like going from parenteral to enteral, tapering down your TPN use should be considered as part of a choice once you are recovered from the acute illness that placed you on TPN, even if you are going to be on TPN for a lifetime. You need to discuss it with your physician. In addition to the nutrients, you’ll need to worry about the hydration TPN delivers. You’ll also need to discuss what monitoring needs to take place.

LH: Supposing the physician isn’t that experienced with patients who don’t use TPN every night. And when the patient says “I think I could have a night off,” he responds “Oh, we mustn’t do that.” What would your advice be, Sheila?

SM: This is another reason you don’t want to be isolated in your community. You want to have others you can talk to so you can sort out your thoughts before you show up at your physician’s office saying, “I want to be off of this.” You need to be prepared for a discussion. If the physician says “No,” you need to ask him or her,” ‘Can you tell me why you think it’s not a good idea?” You should already have an established relationship with your physician before you can expect to discuss having a night off.

LH: Dr. Fleming, the patient has asked for a night off. What will you do and what criteria are you going to use to ensure that step is safe?

RF: I think the key is stability. If the patient’s electrolytes have been stable and his weight is stable, or preferably his weight is starting to climb, then I have reason to try changing the formula. It can be done in one of two ways; you can reduce the amount of nutrition delivered each night or you can decrease the number of nights on TPN. Almost every patient prefers to decrease the number of nights they spend hooked up. We usually start by decreasing one night a week and then maybe two nights a week, making sure they aren’t consecutive nights. We ask the patient to monitor their weight at home and report any symptoms of dehydration. If there is a problem with fluid and electrolyte levels, you may be able to decrease the number of nights on TPN simply by giving them saline or D5 half normal saline which can be infused over a few hours.

LH: Dr. Fleming, what criteria do you use to determine whether the patient is hydrated: Do you measure their urine output?

RF: As a general rule, it’s good to have a liter of urine output a day, though it’s not always practical. It depends on what the disease is. If it’s intestinal pseudo obstruction, you might very well settle for less. But in people who are susceptible to kidney stones, as many people with short bowel syndrome are, then the urinary volume is more important. In those patients we really push for at least a liter of urine a day.

LH: I’m sure there are a number of you in the audience who have gone through these transitions, and some of you who have attended the Nutritional Restart Center (NRC). Does anyone want to share their experience?

Audience: I tried the NRC program this spring after having problems with my immune system. At the program they discussed ways for staying hydrated with oral rehydration solutions, and how to measure whether you’re becoming dehydrated. For example, I check my weight every morning. If I lose three to five pounds from the day before, chances are I lost fluids. I also check my urine specific gravity and stool volume output. If my stool output is too great, I need to make a decision to either run fluids or TPN that night. I would talk to your doctor about the possibility of visiting the NRC, you may or may not be a candidate, but you can learn from them.

[Editor’s note: for more information on oral rehydration solutions see: “Fluid and Electrolyte Balance: A Must with TPN” in the March/April 1997 Issue of the LifelineLetter. A videotape of the session “Improving Gut Functions” from the 1997 conference is also an excellent source of information on this topic and will be available from the Oley office this fall.]

RF: I think the NRC provides a wonderful educational opportunity for patients with gut dysfunction. But you have to realize that the studies reported from that group have all been uncontrolled. They have not been randomized with a placebo group to show that using growth hormone and glutamine was better than using nothing. We recently completed a study at Mayo, where we repeated the original study from the NRC group, but all randomized patients received in a crossover design active treatment (growth hormone and glutamine) and placebo. Our study showed there was not much difference between active treatment and placebo. So if NRC patients are improving, my own bias is that they are improving primarily because they are being educated properly and because of the diet.

Audience: I’m a gastroenterologist from the Mayo Clinic Rochester. I’m a great believer in decreasing TPN wherever possible, but we do have this Medicare problem. Medicare tends to believe that you either need TPN everyday or you don’t need it. Sometimes you can get it down to five or six days a week, but they may refuse payment if you are using less.

LH: Having worked for Medicare in the past, I know this is a complicated issue. In general, if you start out on nutrition support six or seven days a week, and then in six months you begin to wean off, there shouldn’t be any problems. They understand that. However, they still have difficulty with the concept of parenteral nutrition three times a week from the beginning. One third of Medicare dollars are being spent on nutrition for long-term dialysis patients who have no appetite and often become nutritionally depleted. In some centers it is common to feed these patients about 700 calories, three times a week. This has become a huge cost and the benefits are still not well demonstrated.

Audience: Is there any data on how HMOs respond when you come off TPN, suffer a set back and need to go back onto the therapy. Do the HMOs hold out and say you managed without it and now you don’t need it?

RF: I haven’t experienced this problem with HMOs.

SM: I don’t think there is any data available, but managed care plans normally follow Medicare guidelines. What I find with managed care, however, is that they are often more willing to go outside of strict guidelines. A lot of it depends on reimbursement issues, but in general, I think HMOs will be more open to having patients who do not require daily specialized nutrition support.

Question 4: There are many consumers who have continued in their profession after they have become IV or enteral nutrition dependent. How can these folks best guard their insurance benefits and hold off having to seek disability? How can the consumer help keep costs down? How can the consumer be sure they are paying a reasonable price for the services provided? What is the physician’s role in helping the patient to decrease costs?

SM: Your main concern is keeping your insurance coverage. If you have coverage, don’t drop it thinking that you can just pick up other coverage. Even with the new portability law, there’s a lot of issues that haven’t been addressed yet so don’t go without coverage if you have a choice. I also think that if you want to remain employed, that will be your driving force in finding a solution no matter how bleak it looks.

In terms of keeping the costs down, be aware that a majority of the time the providers of your therapy have contracted with the payers for a specific dollar amount. However, I think there are providers out there that are willing to negotiate with you. As far as keeping track of your bills, the task will likely be onerous, but you need to start somewhere if you are going to ask that question. The other issue is whether your provider bills you one thing and the insurance company another. This is certainly something that needs to be addressed.

As far as determining how much your therapy should cost, I don’t know that we have that answer. There are some costs you can control, but you probably don’t want to ask your physician to put you on the least expensive formula he or she can find.

LH: Dr. Fleming could you address what the physician’s role is in all of this?

RF: Large programs can put their contract for care out to bid to make sure there isn’t a company who can provide the same care at a lower price. But as far as a physician managing an individual patient, minimizing the frequency of care without compromising overall care, is important. Second, converting someone on TPN to enteral nutrition, which is one-tenth the expense. Third, and one that’s frequently overlooked, is to minimize lab tests. The longer people are on TPN, and the more stable they are, the less frequent you need lab tests. If someone has been on TPN for years and they are doing well, we don’t check lab tests more than once every three to six months. Also, as physicians we have a responsibility to communicate with the providers, to know what they are charging.

LH: Mary Patnode is a long term lifeliner and school guidance counselor who has had some tough times with insurance coverage, but has managed to avoid going onto disability. Could you share your experience Mary?

MP: After 17 years I’m still on the same private insurance policy. Some of the actions that have made this possible, is that my lifetime maximum was increased by my insurance company to keep up with the inflated cost of health care. I had nothing to do with that. However, I did try to be vigilant about the cost of my care. I questioned why I was still being charged a high monthly fee for a pump which within two years was certainly paid for. There were instances of product switches, simple things like gauze sponges, where I could substitute a cheaper brand without compromising my care or quality of life. These considerations are less of an issue these days, since currently my bills are done on a per diem basis. Another event precipitated by Liz Tucker looking closely at her insurance bills, was her discovery that the insurance company was deducting much more from her policy’s lifetime maximum than what they were actually paying her provider. Liz was instrumental in getting a class action suit here in Minnesota which has changed this insurance practice throughout the state. The amount paid to the provider must now be the same amount deducted from the patient’s lifetime maximum. This resulted in about a half a million dollars being reinstated to my lifetime maximum. [Editor’s note: For more details see, “Is Your Insurance Company Charging You Fairly” in the January/February 1996 LifelineLetter.] Currently I am hoping my insurance company will raise the lifetime maximum again, since it is pretty standard practice to go to 2 million dollars nowadays.

It’s not always possible, but I think maintaining my employment status, sometimes taking a short leave of absence, has contributed to my general health and well being.

Audience: Does anyone have advice for a 26-year-old consumer who is on Medicare and Medicaid? I have graduated from college with a degree in occupational therapy, and I just need to finish my field work. How will being on Medicare affect my getting a job?

SM: You should not be prevented from working because of your disease or your therapy, but the insurance coverage is going to be a difficult issue. If you haven’t been on a private, third-party insurance policy you will be considered to have a preexisting condition. With the recent portability law, they are limited in being able to deny you coverage forever, but you will most likely have to go through a period of time where you will not be able to submit any claims related to your disease. So you might try doing something on a part time basis to begin with, since you can work a limited amount without losing your Medicare coverage. You want to get some employment history behind you, some experience so you look like a better candidate when you go for full time work and come with the baggage of expensive health insurance claims.

Audience: I just want to add that you should talk to your Social Security representative, because Medicare offers some back-to-work programs where you can keep your current insurance coverage until you get other coverage.


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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