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Newsletters: There’s an Elephant in Your Living Room, 1999
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There’s an Elephant in Your Living Room, 1999

Facilitator: Lyn Howard, MD, Medical & Research Director, The Oley Foundation, Head, Division of Clinical Nutrition, Albany Medical Center

Panel: Mariah Abercrombie, HomePEN Consumer; Terry Clemmer, MD, Professor of Medicine, University of Utah School of Medicine, Director of Critical Care Medicine, LDS Hospital; Steve Swensen, President, The Oley Foundation, Parent HomePEN Consumer

The concept of the Elephant in Your Living Room, is that when you are on HomePEN, there are aspects of the therapy that can get in the way of your living a “normal” life. This article covers the popular, interactive session where HomePEN consumers and clinicians discussed some major stumbling blocks - i.e. preserving access, decision making, the physician/patient relationship - and how to get over them. A videotape of this presentation will be available soon from the Oley Videotape Library.

Question #1: The idea that it’s important to protect and preserve your access site, whether it is an intravenous site or tube enteral site, has become a central issue in home therapy. It’s a job where the consumer takes on the major responsibility - even to the point of protecting their critical line from less experienced professionals. Dr. Clemmer, what factors do you think are critical for patients and caregivers to preserve their access?

Dr. C: The longevity of an IV site is dependent upon several things, but by far the most important, is the obsessive-compulsiveness that we teach patients in the care of their site. We’ve had patients who have had the same catheter for many years. We’ve also had patients like the one who insisted on water-skiing with her catheter who had repeat infections. She was very nonchalant about her catheter and her care for it. This became a major problem and eventually contributed to her death.

The biggest reason for loss of catheters, is infection. The consumer has to be very aware of that. We explain to them that if you loose this catheter repeatedly and you’re a long term TPN patient, eventually you can run out of sites. What we find, is that once a consumer takes it personally that this is his lifeline, very quickly he becomes better at reducing infection rates than when we have hospital personnel changing dressings etc.

The next most common reason for loosing a catheter, is the clotting off of the vein. One of the tricks we’ve learned over the years is that a very low dose of coumadin will usually prevent the vein from becoming thrombosed. This means, even if it becomes infected and we take the catheter out, we can frequently use that site again several months later. If it’s not thrombosed, it still becomes a potential site. (Abstracts are available from the Oley office.)

Dr. H: How do you sustain an enteral line?

Dr. C: The long term enteral tubes, of course, include a jejunostomy tube, a gastro-jejunostomy tube, and a gastrostomy tube. With the gastric feedings, especially if the stomach is not emptying normally, you frequently get leakage of gastric juices. This makes caring for the stoma site difficult.

Dr. H: Jejunal tubes are notoriously difficult to anchor. With a G-tube or G-J-tube, there is a large enough volume to allow a balloon to be blown up on the inside of the stomach to anchor the tube in place. But if you access the jejunum directly through the skin, that same balloon would obstruct the jejunum. You may have to suture the tube to the skin, but the suture is sore and usually pulls out after a few weeks. Does anyone have any tricks on that score?

Kathleen McInnes (RC, HEN Consumer since 1995, Chicago, IL): Originally I had stitches to hold my J-tube in place, but they kept pulling out. Now I use a No-Sting Barrier Film (3M) on my skin. This helps the tape stick and helps protect the skin. Next I tape a drain sponge (a 4” x 4” split) to my skin, over the site, under the tube. Then I put a gauze pad (4” x 4”) on top of all of it, and tape down all four sides to my skin - including where the tube comes out. It took some practice, but it really does hold in fairly well. I’ve had experiences, like Thanksgiving dinner, when I was bent over eating, and out pops my entire tube. The good thing is that once the track is formed, you can usually reinsert the tube yourself. You don’t have to go to the emergency room.

Dr. H: A lot of people ask whether they have to keep an occlusive dressing on their central line. I can tell you that there really isn’t a good study out there to answer this important question. In the nephrology literature, (people who have catheters into their peritoneum for constant dialysis,) they were able to show, that if the patients had no dressing and kept the skin site clean and dry, they had fewer episodes of peritonitis than when they used an occlusive dressing. This, of course, leaves homePN clinicians wondering whether it’s equally true for our central lines. We don’t have any data, and I’m not advocating this technique, but is there anyone here who has a central line which they leave undressed?

Elsie Roesch (RC, HPN Consumer since 1988, Syracuse, NY): Ten years ago, when I first started TPN, they always said you had to have an occlusive dressing, and Tegaderm was the thing. Over the years, I found it terribly irritating, with skin breakdown and itching. So the nurse in the hospital suggested I use a 2” x 2” gauze instead.

Dr. H: So it’s covered with gauze, not just flapping in the breeze. I’ve consulted with patients who use no dressing at all.

Jim Wittmann (HPN Consumer since 1975, Riverside, CT): I’ve found in the summertime, especially, sweat can build up under an occlusive dressing. So I use only gauze in the summer.

Diane Cumberledge (RC, HPN Consumer 1985, St. Albans, WV): I was getting terrible rashes from cloth and plastic tape, and occlusive dressings. Now I use Tegaderm just for swimming and showering. Otherwise I use a 1.5” by 2” Telfa Pad (Curad), and tape it down with Hypafix (Smith-Nephew) - a wonderful tape that stretches and breathes. I haven’t had a single tape rash since I started using Hypafix.

Dr. H: Has anyone ever tried a steroid cream on a tape rash? Steroids can contribute to an infection, but if the cream is used sufficiently far away from the exit site, it may help reduce your rash.

Mariah, as a teenager, what have you done to make sure that your access site is acceptable to you?

Mariah: My site is on my left side and I don’t really have any problems with it. Sometimes I’ll cut the tape smaller if I’m wearing a tank top.

Dr. H: We’re always concerned about a person’s image. The more tubes and pieces you have, the more problematic sustaining an image is - especially when you’re young. Thus there was the introduction of ports. Have you ever had a port, Mariah?

Mariah: No. I think if you only need a catheter, then a port can be a great thing for your body image. But for me, I have a G-tube and an ileostomy. And in my eyes, if I have those - what’s a catheter?

Liz Tucker (RC, HPN Consumer since 1986, Bloomington, MN): I have an ostomy and a catheter. When I start feeling badly about my body image, I think about what a conversation piece I’d be at a nudist colony.

Dr. H: Steve’s son Matthew has had a port. It was a difficult situation because the skin didn’t heal well over the port. But what was his reaction to getting a port and getting rid of an externalized line and dressing?

Steve: I think he found it very liberating. He presently has a PICC line and is far happier with that than any other catheter he has had. The port offered some advantages, but it wasn’t the right catheter for Matt.

Linda Gravenstein (RC, Parent of a homePEN teenager): Body image is very important to teenagers. My daughter’s had different catheters and now she has a port....I think if you can get used to the port, you can be very happy with it.

Mariah: Body image is a very important aspect, but I also think if you’re on TPN you need to be comfortable with your body either way. I feel that my self esteem is high enough that being on TPN is not something I have to hide or be ashamed of. It’s something I can be open about and share with others.

Dr. H: I think the peculiar advantage of having a port, is that if you have no needles in, then bathing, swimming and other water sports aren’t such a big concern.

Felice Austin (Parent of panelist Mariah Abercrombie, Henderson, NV): Mariah has had this line for more than 11 years. She goes swimming, and into the spa, without a problem.

Question #2: I think it’s the common experience that when people first go home with parenteral or enteral nutrition, whether they are an adult, a youth or senior person, they are usually looking for help and support from someone close: a family member, a caregiver. Yet ultimately the balance has to shift to where the consumer takes on the overwhelming brunt of their own care. How do you do that without giving the person a sense of rejection or them feeling like you’re pulling the rug out from under them. How do you trust a teenager who says, “Yes, I can do everything.” before they’re even old enough to drive? Steve, you have a 16 year old who was pretty reluctant to even look at his site initially, and now is anxious to spend most of his time in Los Angeles away from you, his primary caregiver.

Steve: It’s true. My son would like to spend more time with my wife in Los Angeles, but in order to do that he has to take on full responsibility for his catheter care. So that’s basically what has gotten us past this issue. He’s taken charge and he does it very well. My wife and I haven’t had any problems giving up control, basically because he’s been so successful. The area though, that I think is a little more difficult to give up control on, is the issue of self concept. You want them to have a positive self image of their condition, and the resources and the strength of character that’s required to deal with the therapy. I wouldn’t say my son is lacking those, but he’s never taken a positive view towards homePEN therapy. He’s always seen it largely as something that is diminishing in some way of himself as a person. I guess my point is simply that this has proven itself to be a more difficult area than the mechanics of catheter care, solution preparation or what have you.

Mariah: When I say I have high self esteem, don’t get me wrong. I have days where I say, “This isn’t fair. Why me?” or “I’m never hooking up again. Who cares what happens.” But I know it’s different when you have a teenager who has just started therapy versus someone like me. I started when I was three years old and don’t really know a different type of life.

Dr. H: What helped you go from being somebody who as you say, at times wants to totally write this whole thing off, to accepting chief responsibility for it?

Mariah: I think a lot of it’s personality. You know, some people have a more positive outlook than others.

Dr. H: When you decided to take over, did you have any trouble with your mom? Did you have to push her away?

Mariah: No. I actually started hooking up when my mom broke her wrist and she couldn’t do it for me. She walked me through it. I think I was 13. Although, if I hadn’t been at the right age for the transition, I wouldn’t have continued with it. But I think I was ready for it. Once I learned how to hook up myself, I felt I had more independence. I didn’t have to rely on her. I could go out when I wanted, and hook up and take care of myself without her.

Dr. H: Dr. Clemmer, do you see any role for you as the clinician to push this issue?

Dr. C: There are certainly times when I think people need to be encouraged to take responsibility for themselves. So yes, I think the health care provider also plays a role. First of all, to make sure their patients are confident and competent. You need to give them the self assurance they need to take care of their lives. I also know that some people, especially older people, never transition.

Dr. H: There are many people who are teams, so to speak, often a spouse and a consumer, where this issue of dependence can be a rough one. It can also be rough if you don’t have someone close. How much do you let the other person enter in? How much do you push them away?

Liz, you’re pretty independent. When it hasn’t gone well, what do you do?

Liz Tucker (see description page 5): I actually have a few friends I can count on if I start to get into trouble. But for the most part, I’ve been very fortunate. For the 13 years I’ve been on this therapy, there’s only been one time that I’ve had to ask for help. That doesn’t mean there haven’t been days when I probably needed some help, but I wasn’t smart enough to ask for it.

Diane Cumberledge (see description page 5): I was 29 when I started TPN. I remember I was in the hospital, away from home. I’d had this port for a week and had learned to use it. Then my mom came and said “You’re going to have to move back home so I can take care of you. I’m going to do everything.” I told the doctor, “Take this out of me if that’s the case.” So I was completely independent with no support, basically. Then I got married two years ago. My husband knows when I need help hooking up, because I’m tired or whatever. So I’ve experienced both extremes. When I was on my own, there were days when I skipped a night because I didn’t feel like hooking up. I just couldn’t emotionally deal with it. I still have those nights, but now I have the support system to help me get through them. So you need to be independent, but you need to know when to accept help.

Tim Joyce (RC, HPN Consumer since 1982, Chicago, IL): I’d support what Diane said. For those of you who have never experienced the luxury of a night off once in a while, you should try it.

Mariah: I think it’s very important for everyone to have a support system, because we all have nights when we’re too tired or sick, and not thinking as logically as we should be. I also think everyone deserves a night off now and then. After so many years, it’s hard to do it every night. I’ve taken over my care, pretty much, but my mom still helps out one or two nights a week, just to give me a break. So I think it’s really important to have someone there who can help. Because it’s not a big deal for them, but it can make a huge difference for you.

Dr. H: One of the things that’s been really spotty for caregivers of consumers, especially for families with elder consumers, is respite care. Have any caregivers here managed to arrange respite opportunities?

Mariah: My mom used to train someone so she could go to an ASPEN conference or an Oley conference and have a break.

Dr. H: So mom was wise enough to plan ahead.

Carol Lee (Parent of a 7 year old consumer on HEN since 1994, Auburn, WA): We’re lucky. We live in Washington State and our son is covered under his state medical and SSI. It pays for 110 hours of respite care per month. We have a college student right now who is just excellent. She usually comes about three days a week and helps us out with home schooling and all kinds of stuff, not just his tube feeding. Legally she doesn’t have to do the things she does, but she does them anyway because she wants to. So we are able to leave the kids with her for the weekend.

Dr. H: How did you get the financial backing to be able to arrange that help?

Carol Lee: When my son’s SSI funds stopped, due to me getting remarried, he was able to get the state medical coupon. The coupon pays for a personal care attendant. In addition, once a year they give us funds to pay for things that insurance doesn’t cover. It allows us to do things like go to the Oley conference. Plus we get the 100% medical coupon which pays for 100 percent of his medical care.

Marcia Boatwright (HomePEN nurse, Minneapolis, MN): As a nurse clinician, I’m hearing more and more about church communities who are developing respite groups with retired nurses, clinicians, aids and even lay people. There are a growing number of these groups. Consumers might have one or more of these groups in their community, or may want to get one started in their own church.

Question #3: There’s not much controversy with Oley’s central role, which is getting people together to share information and support. That is what all of us look for, expect and experience. We also hope to hear about research and new breakthroughs at this conference, and in the LifelineLetter. What is much more of an ethical tight rope, is that Oley, in the last few years, has allowed some marketing at its activities. Oley is not meant to be the mouthpiece for a sales pitch. On the other hand, you are the channel for helping whatever products become available, be what you need. And so that dialog has to take place at some level, such as a focus group. But the issue becomes the line along which we walk: they have a business to run, and we are the foot in the door for making something happen. Steve where is this line?

Steve: As parents of a child who depends on these services and products, what is most important to us, is choice and the information to make the correct choice. Just two quick examples. Some time ago, the homecare provider we were with was suddenly acquired by another company. For a while it looked as if we could not remain with this provider, because they were not involved in the preferred provider program that the insurance underwrote. At that time, I had virtually no knowledge of any other homecare company. To change providers, on our own, would have been largely a plunge into the dark.

Another concern is catheters. From my point of view, one of the key aspects of preserving sites, is catheter choice. Now you can’t choose a catheter if you don’t know anything about them. If you rely principally on the hospital surgeon or people who install the catheters, I think you are going to walk away with a very meager amount of information. But at Oley you can learn something very substantial about these products. You can get a sense of what they can do and can’t do. Of course they are selling these products, so a certain amount of balanced evaluation is important. But to me, as the father of a consumer, that’s where I come down. Although it’s a very difficult line to walk, I think Oley has to facilitate consumer/industry interaction.

Dr. H: Dr. Clemmer, as a physician who does a lot of this therapy, you must be constantly approached by these companies to consider their products. What is your approach to sifting through the information so you can give sound advice to your patient?

Dr. C: I no longer have a choice of catheters. If my patient says they would like to try this catheter, it may or may not be covered by their insurance company, and it may or may not be within our hospital supply line. Suddenly I find that people aren’t marketing to me as much as they used to, but instead are marketing to my managed care operation or the supplier. And, of course, the bottom line is they try to use the cheapest product they can that will do the job satisfactorily, not necessarily the best. So choice is being taken away from us in a lot of different ways....But I agree that Oley can play a very important part in educating the consumer.

Liz Tucker (see description page 5): It’s important for consumers to remember, that you can make a difference. I tried a port for a while and had the sludge problem. I did a lot of research on my own and found one that supposedly was better. It was not one that my hospital had. So I simply put enough pressure on a number of different places - the insurance company, the hospital, the physician - and I was able to get the catheter that I hoped would work better. It turned out that it didn’t. But I think sometimes in the atmosphere today, we have a tendency to say managed care has made such a huge difference and there is nothing I can do. Don’t ever forget there is something you can do. What you have to do is educate yourself, which is what Oley helps with a great deal. Then you’ve got to be the person who makes the noise, because that’s when things happen.

Dr. H: Be the squeaky wheel.

Todd Friedman (HPN Consumer since 1976, San Pedro, CA): Have there been any studies that show one catheter to be more reliable and longer lasting than another?

Dr. H: There are few studies of the effect of catheter composition and the likelihood of cracking or hardening. We know that infection rates are about the same for a port, an externalized line and a peripherally inserted line. The newest data relates to needleless devices. While these devices clearly reduce the number of people who have been contaminated with AIDS and Hepatitis through needle sticks, they have done that at the expense of the homePN patient, in whom they’ve been shown to increase the septic infection rate (see LifelineLetter, March/April, 1998).

Dr. C: I think we are a little naive to think that what works well in one patient is best in another. I think there are differences between patients. Not only satisfaction differences, but the way they react to different materials and everything else.

Bruce Grefrath (HPN Consumer since 1984, Washington, DC): I’ve had a couple of run-ins with my insurance company over the past few years, and one thing they definitely respond to, is the bottom line. If you can show them that you’re going to save money [fewer infections equal lower hospital bills], then they will listen to you. So try to approach your problems from their point of view.

When choosing a catheter, one of the things I’ve found invaluable, is to go to a conference and talk to every company exhibiting there. If you talk to them long enough, little tricks, ideas and tidbits are going to come out.

Dr. H: So what we are hearing from some pretty seasoned consumers, is don’t give up. Keep your information base clear. You may be able to make a difference.

Sheila Messina (Nurse, HPN Consumer since 1983, San Jose, CA): One thing I’m concerned about, that I think Oley can really participate in, is appropriate clinical monitoring. I don’t think a lot of consumers, including myself, know how we should be monitored and what we should expect....We assume that someone is watching out for us in terms of clinical monitoring - the physician, the pharmacist, maybe even ourselves. I’m here to tell you that nobody at my provider was....There are a lot of consumers whose physicians are not specialists in TPN and don’t really understand the long term TPN patient and the impact on them. I think Oley has a very serious place in informing us of what we need to be looking at and what can be going on with us.

Dr. C: One important point about health care providers monitoring patients. I would say 50 percent or more of homeTPN patients are put on TPN by physicians who have no idea what it’s all about. That physician is relying totally on the home health care service that he signed you up with to do the monitoring. And if you end up with a home care company that is not very competent, then you’re in trouble. So the selection of that home health care provider is very important, unless you happen to find an experienced physician who can take over the monitoring.

Dr. H: Oley gatherings can offer both an opportunity to share and an opportunity to market. And so, if you’re a small company and your one star, independent patient comes to the Oley conference, a few weeks later they may no longer be your patient. That has tremendous implications for the willingness of companies to tell their patients about Oley. Where do we have a responsibility to make sure that people are not the focus of a marketing effort?

Linda Gold-Pitegoff (HEN Consumer, Brookline, MA): I feel in some ways we should be the focus of a marketing effort. I was using a company that I was extremely unhappy with, and when I came here and learned about other companies, it gave me the incentive to move on. Although a small company may feel the loss of a consumer more strongly, I think a lot of times for the consumer it may be best to be with a company that has more experience with TPN and EN feeds.

Madalyn George (Nurse, Parent of an adopted 10 year boy on HPN since birth, Syracuse, NY): My philosophy has been to never take no for an answer. Whenever someone tells me “That’s not possible,” I go and ask someone else and then someone else and so on, until I’m convinced there is no way to do it. The second thing I want to comment on, is in relation to independence. Every school year I give my son, Roy, another task to do as far as his TPN is concerned. So every year he takes on a little bit more. The third thing, is that I think Oley’s role is to offer an equal opportunity to everyone. I think the fact that we have the option of talking to as many people as show up from different companies and making the choice for ourselves is very important. I think for me, really, the biggest factor in choice is trust; I need to know that I can trust the people I call on the other end of the phone to give me the information I need.

Diane Cumberledge (see description page 5): As far as where Oley should be on the marketing issue, I think Oley needs to get the information to the consumer, because an educated consumer is a healthier one. It’s up to the consumer to go back to their local company and say, “Here’s what you need to be doing for me. You need to be monitoring my labs. You need to be doing the clinical work for me, working with my physician.” I have had big companies and little ones that won’t do that for me. I’m one of the consumers who switched companies shortly after a conference, but it’s my life. I don’t know the clinical ins and out, so I made sure the company I switched to, does.

Dr. H: So you’re basically saying, let industry get out there and fight to show who is the best.

Dr. C: I think Oley’s role should be to educate. I think Oley can also help set a standard for monitoring and what to expect from a home health care company, in conjunction with ASPEN and other professional associations.

Dr. H: ASPEN does have standards for home nutrition support, though maybe it’s not so easy for a lay person to read. (Available from ASPEN’s fax-on-demand line: (800) 905-7781, document #3017)

Allison Hilf (RC, HPN Consumer since 1990, New York, NY): What if you get a call from someone new at HPEN and you realize they’ve been given bad medical advice, a definite “no-no.” How do you approach that issue without scaring the person and without them losing trust in their doctor?

Dr. C: That’s a difficult issue, even for physicians. You have to do it very tactfully, there’s no question about that. Sometimes you can suggest alternative procedures, protocol etc. that they can talk about with their doctor.

Question #4: There are a lot of pieces that go into building a good, trusting relationship between the physician and consumer. Would you tell us, Dr. Clemmer, from your standpoint as the clinician, what do you think supports this relationship and what destroys it?

Dr. C: To have a good relationship between the health care provider and the consumer, you have to have trust and confidence in the person or people you are dealing with. In addition to that, I think there are some personal communication skills. In homecare, you have to transition over to where the person feels he has some responsibility for his therapy, that he’s in charge of it. In order to do that, you have to listen to the consumer. You need to really understand what the patient’s needs are, and then sit back and ask yourself, “Does it need to be done my way, or can it be done their way? Is this reasonable?” My role becomes more of an informer, letting them know what the consequences are, where to go, and letting them have their choice.

I think we also have to be constantly changing our ideas as we learn from the consumer about what works and what doesn’t. Most of the things I’ve learned about homecare have come from patients, not books. Every patient is a little bit different. It’s okay to mold and adapt to their needs.

Dr. H: If you go to a professional meeting these days, a physician will be asked, as with any presenter, to sign a disclosure statement which indicates all of their financial relationships that could influence their perspective on the topic. In other words, their research may be funded by a particular company, so it’s in their interest to ask people to consider a drug made by this company. Consumers don’t usually ask their physician about their financial connections. Do you think they deserve that degree of openness?

Dr. C: They certainly deserve it. I wouldn’t be embarrassed at all as a consumer to ask that question of my physician. This is less of a problem today, though, because of the new legalities and burdens that are upon us. New Medicare law says it is illegal for me to refer a patient to my own company or a company I get money out of. I personally have kept away from that by making sure that I was not involved in any way in my patients’ selection of a home care company. Because, in addition to my work at the hospital, I’m the Medical Director for a home health care company. In the past there were other physicians who referred patients to companies that they had stock in or were employed by in some way.

Dr. H: I’d like to be very open about this issue. For a long time there was no reimbursement mechanisms for a physician unless they saw you in a hospital bed or outpatient clinic. If they spent 40 minutes checking your x-ray, talking to you on the phone, talking to your home health care company about adjusting your formula - there was no reimbursement from Medicare and Medicaid and other third party payers. So industry offered to reimburse physicians, who made proper chart documentation, at a reasonable rate. Almost overnight that management fee went from something that was reasonable to something that was a marketing device encouraging referrals. Fortunately, things have been cleaned up a great deal. It’s become absolutely clear that you must not have a financial incentive or do anything that gives you a kickback. Still, it may be appropriate to ask what your physician’s financial relationships are.

What do you think, Dr. DeLegge? You’re a practicing physician who has walked this line a lot.

Dr. Mark DeLegge (Physician, Charlestown, SC): It’s a difficult relationship. My daily practice time is eaten up considerably with the care of homeTPN patients for which I am not reimbursed....Now realize, I care about my patients and obviously wouldn’t be doing this if I didn’t want to; but there is a business side to this, as there is to everything in life.
Having said that, I am still bombarded by providers wanting to take care of my patients. And most of them, when you ask for their outcome management data so you can compare apples to apples, it’s difficult to get. I have some very definite criteria that I want from my provider. If someone is going to come up to the table that will meet those standards, then I will use them.

I do consulting for patients on all types of nutritional services and I’m open as to who I have relationships with. I tell my patients, “This is what I do. Here’s who I’ve had some relationships with.” I tell them this prior to them beginning on homeTPN. Then I give them my personal opinion, which I think is better than what most hospital-based home care company discharge planners do. These discharge planners have an incentive to get the patients home on the hospital’s own home care service, and often times these companies are without the expertise to really care for those patients. It’s something I feel strongly about.

Dr. H: Is there any role here for Oley to help?

Dr. DL: Absolutely. You’re doing it by making consumers aware that they have a choice. They should know their providers, their physicians and what their providers and physicians do.

Phillippe Heyman (HPN Consumer since 1978, LeMesa, CA): In California and many other states, some of the Medicare-HMOs are dropping a lot of coverage. In fact my company, in California, is dropping coverage on December 31st. Last week I shared this with my physician and asked him which provider he felt he would be reimbursed by, and would cover my products and supplies. He’s going to call his IPA and talk to the head. You really have to keep current with your research because things are changing constantly. One day one company is it and the next you have to change. It’s like the phone company. You have to stay on top of it.

Dr. Darlene Kelly (Physician, Mayo Clinic, Rochester, MN): I think that one thing the consumer can do is exemplified by my good friend and patient, Liz Tucker. She has often gone to Washington to testify. I’ve been told by those who have been there, that it’s the consumers, rather than the physicians who get the ear of the legislators. So if you’re trying to influence something, go to your legislator.

Dr. H: So the consensus is, to not hold back. All questions are legitimate.

Now let’s discuss what destroys a relationship. I’m going to spike this issue a little bit by saying that if I had to name one issue most likely to negatively affect a physician/patient relationship, it would be the management of major pain medication. Dr. Clemmer, if you had a patient on opiates who wanted to travel, what sort of advice do you give them?

Dr. C: Some of the consumers attending this conference have had their physicians send me letters, stating the consumer’s needs and what their problems are. This way I could be aware of the consumer and know they were not a con artist. I can tell you that conning for narcotics is a big problem now. We need to have some firm evidence before we can prescribe. An even better solution, is if your physician happens to know another physician in the area you are traveling to. Have him call that personal contact, because even letters can be forged. Or, if you can, bring enough supply with you so you don’t have to rely upon the local people.

Dr. H: Many consumers, especially those with pseudo-obstruction, have felt themselves to be under suspicion at times, and it’s made it very difficult to operate a trusting relationship. What have you learned about how to put this issue on the table and prevent it from rolling out of control?

Felice Austin (see description above): Once, when Mariah’s pain management specialist had gone on vacation, it came to be Friday at 2 p.m. when I discovered that they didn’t have a renewed prescription. And I thought, “What do I do? Do I take her to the emergency room where they don’t know us from Adam?” I was absolutely scared to death. The home health care company said it was somebody else’s problem, not theirs.

Barbara Witt (On and off HPEN since 1983, Sparta, WI): If the facility you go to has a walk-in urgent care, you could bring them papers that describe what your daughter’s medical condition is, who her physician is, who her pain doctor is, proof of her need, etc....When my husband spilled my bottle of pain medication that had morphine in it, I was in a similar bind. My physician was on vacation and they wouldn’t renew the prescription. So I went into urgent care, brought my papers along, and talked to a physician. He made one phone call and consulted with another physician, before making me a 1 time prescription with just enough drug to hold me over until my own physician returned.

Dr. C: I think you ought to expect to be serviced by your home care company. If that happened to one of our patients, the pharmacist would call me as the medical director and explain the situation. Based on the pharmacist’s experience, I would probably authorize enough mediation to carry you through until your physician returned. You see the pharmacist should know you, or at least be familiar with you and your medical situation. Most home health care companies have a 24-hour service with someone who can authorize pain medication for a short period of time.

Dr. H: In general, a physician can call in a 3-day prescription on a narcotic, only. After that it must be a written and delivered prescription.

Bonnie Sjoberg (RC, HPN Consumer since 1995, Milaca, MN): A couple of years ago I was experiencing a lot of pain, so I stopped at our local clinic to get pain medication. I saw one of the local doctors who I did not know. She wanted me to see the surgeon and the GI guy who was there, who I didn’t know either. That was fine. I did. I went home and took my medication. About six months later, I had to go on a referral to another doctor and I picked up my records. I looked through them just to see what was in there. And from that one visit, there was a 2-1/2 page letter in my chart that described my behavior as manipulative and narcotic seeking. They accused me of possible Munchausen. Thank God I found the letter because those reports will never go to anybody else. My physician wrote a letter to cover it.

Dr. H: I think that is a good, poignant way to deal with this issue. People meeting you for the first time have to think of the potential for narcotics abuse. It’s very important that you have an established physician who has cared for you long enough, that is standing behind you during this difficult journey. It isn’t something you can do on the spot with anybody.

Bruce Grefrath (see description above): If you’ve got an issue, keep pushing and pushing until you get it solved. It works. I’ve never had to change anyone, though boy have I had some tough fights.

Dr. C: I want consumers to understand that relationships are what it is really all about, but relationships run two ways. I’ll tell you, and I don’t want to insult anybody, but a lot of consumers are really a pain to take care of. You are a difficult group. There’s no question about it. Many physicians will try to avoid you. It takes a special physician to get that kind of relationship with.

Special thanks to Tim Joyce for transporting the microphone between members of the audience during this session, and to Phillippe Heyman for donating use of the microphone, making it a truly interactive one.

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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