- Meet Consumers/Patients
|Newsletters: There’s an Elephant in Your Living Room, Part II|
There’s an Elephant in Your Living Room, Part II
Facilitator: Lyn Howard, MD, Medical & Research Director, The Oley Foundation, Head, Division of Clinical Nutrition, Albany Medical Center
Panelists: John Grant, MD, Professor of Surgery, Director of Nutrition Support Service, Duke University Medical Center
The popularity of this interactive session at the 1997 Oley Consumer/Clinician Conference inspired a second session at the 1998 Conference which covered a range of topics from evaluating new technological devices to savvy traveling tips. Videotapes of this and other conference sessions are available through the Oley videotape library (call toll-free 800-776-OLEY).
Question 1: You’ve heard about a new technological device that sounds like it may improve your quality of life. You don’t know a lot about the device and you’re not sure if your insurance would cover it. How should you approach this situation?
Dr. G: HomePEN technology rapidly expanded in the beginning of homecare, mostly driven by physicians....Now technological development is driven more by consumers to improve their quality of life, and by cost as we’ve become more cost conscious. What I and my colleagues have learned over the years, however, is that new technology is not always all that it appears to be. An example where we made a mistake was with in-line filters. The concept was to put a millipore filter between the TPN bag and the patient to reduce the risk of infection. However, subsequent studies showed infections developed at the joint between the filter and the line going to the patient. The filters didn’t really reduce infections and in some cases increased them. They also gave a false sense of security to the preparers of TPN solutions that they didn’t have to do top quality work because any mistakes they made would be caught by the filter. In-line filters can also clog or cause a break in the line. So we’ve learned that this physician driven technology was not what it appeared to be, that in-line filters are not needed except in special circumstances.
Dr. H: Are there any studies indicating the use of in-line filters for removing particulate matter in TPN solutions?
Dr. G: None that I know of, though it sure makes sense. In my practice we final filter our products, and precipitation while in storage is less likely because our solutions don’t contain any cork material. So we don’t have any indications for removing particulate matter with in-line filters. Do you have any experience with this?
Dr. H: There is some concern, of course, with calcium phosphate precipitation which has been linked to the deaths of two TPN patients. Although calcium phosphate may not precipitate until it’s within the patient, so an in-line filter isn’t necessarily going to protect the patient in this situation.
Dr. G: Another example of a technological innovation that has drawbacks is 3-in-1 solutions. They certainly increase the consumer’s quality of life, but they can present problems. We found 3-in-1 solutions are associated with higher risk of infection, precipitates may form, solutions “crack” and it is harder for consumers to look at the product and tell if it is safe....So my advice would be, if you come across a new innovation, first question, “Does it sound too good to be true?” If it does, then it probably is too good to be true. If you’re still interested, look at the item very carefully and discuss it with your care provider and physician.
Dr. H: Ann, you’re an experienced consumer. If you’re interested in a new product, where do you look for more information?
Ann DeBarbieri (HPEN Consumer): My best source of information about new products has been the Oley conferences. I’ve been on TPN or enteral since 1987 and have found a lot of information at these gatherings. As consumers it’s our responsibility to take charge of our medical status and gather as much information about technological developments as we can. If we’re interested in a product, we need to share the information with our physician. It’s critical to have a good working relationship with your physician. This way you can feel comfortable if they reject the new technology for you, that they’ve rejected it for valid reasons, not just because they are unfamiliar with it.
Dr. H: Any other ideas from members of the audience?
Audience [Adult EN consumer]: You can also talk to Oley Regional Coordinators who may have ideas about a product or procedure, or know someone else that you can talk to about it.
Dr. H: Yes, especially now Oley offers toll-free connections to different experienced consumers each month.
Dr. G: It’s helpful to let your physician know where he or she can find more information about the product. Ask the company for the names and numbers of people actually using the product, so your physician can talk to them or their physician. References are superb. Without adequate information, I cannot recommend a product. I can only tell you whether it sounds like a good idea. Also, because of it’s commercial nature, I wouldn’t rely solely on the Internet for information; however, I think using it to talk to other consumers who are actually using the product is key.
Dr. H: It’s also important to recognize, that in some circumstance there isn’t going to be sufficient information available to make an educated decision.
Now let’s move the situation on. Let’s say you’ve found the best pump for you and naturally you want it, but are having difficulties getting your insurance company to pay for the pump. What should you do?
Dr. G: The homecare companies that we deal with wouldn’t be interested in your problem if they already offer a device that works. We’re in a market of not only payers, but providers and managers. It gets pretty complex when you try to get a product that’s brand new to a homecare company that already has a contract with a supplier who provides a good deal on a pump that’s adequate. The homecare company is not looking for something that’s a Cadillac; they’re happy to provide you a Ford, as long as it costs like a Ford. So unless you can convince your provider that this is the best pump for all of their customers and that the cost is worth it, you’re heading for a struggle.
Audience [Adult EN consumer]: I was in a situation like this and was able to convince my insurance company to pay for the portable pump I felt I needed. I talked to my case manager, then documented my need to pump enteral nutrition during work and showed them how the increased portability of the pump I wanted would help me get back to work.
Dr. G: Who is responsible for maintaining the pump?
Audience [Adult EN consumer]: I am. It’s my pump, so I have to call the company if there is a problem.
Dr. G: So you’re on your own. That can be scary for some consumers.
Audience [Long term adult TPN consumer, Regional Coordinator]: I also have a pump I’m dissatisfied with and have looked at some new pumps at this conference. I found I can trade my pump in for a more reliable one with all of the features I want. I’ll be responsible for maintaining it, but I’m willing to take on that responsibility. I think it will be worth it for the increased quality of life.
Dr. H: What I’m hearing is that long term experienced consumers can be a flagship, paving the way for other consumers to get better products by taking on the risk and responsibility of trying new products themselves.
Dr. G: Let me add that a physician may not be able to get you the pump that you want. I’ve written special requests that have been denied. We’ll try to help, giving whatever leverage we have, but it doesn’t always work.
Audience [Adult EN consumer]: Would it help if your physician wrote a prescription for the particular pump you want?
Dr. G: No. They can say they don’t have that brand and substitute another one. It’s perfectly legal, just like substituting brand-name drugs with generic drugs.
Audience [Long term adult TPN consumer, Regional Coordinator]: Be diplomatic, but definitely negotiate with your homecare company. Remind them that you can take your business to someone else who will provide the pump you want.
Dr. G: That’s unsettling to me. As a physician I don’t want to be dealing with a dozen different homecare companies.
Audience [Long term adult TPN consumer, Regional Coordinator]: I understand that, but if you handle the negotiations correctly, it often doesn’t come to that. You have to remember that the homecare company isn’t doing you a favor providing your services, although they may act that way. You are a customer and they make lots of money off of you.
Audience [Adult TPN consumer, nurse, health care consultant]: You need to take charge, and not act as the victim. It’s not going to be easy. You need to be creative...savvy and empowered, without losing sight of the fact that you’re a human being dealing with human beings. I try to take a balanced approach that allows me to continue doing what I like to do.
Audience [Parent of an 8 year old child on TPN]: I recommend keeping records. When I had trouble with my son’s pump, I put in writing how many false alarms I was getting every night, as well as other problems I was having with the pump, and with that record I was able to get a better pump.
Question 2: You’re planning a vacation but are worried about possible emergencies, or you know you will be arriving late and may need to miss one night of your TPN or EN infusion. What should you do?
Dr. G: Definitely go on the trip. It’s the worst thing in the world to never go on vacation. If you’re on daily feedings, there are several options that may make traveling easier. One possibility is to compress two days worth of TPN into one infusion the day before you leave, so if you or your supplies arrive late, you can skip your infusion that night. If you’re only on five days a week, you can switch your day off to coincide with the trip. That’s completely flexible. The exception, of course, are the few patients who need continuous infusion. In this case, get a portable pump from your infusion company and infuse as you go. You can also make special provisions to be sure your supplies are ready when you get to your destination. Be sure to get the trip and any adjustments to your infusion schedule approved by your physician ahead of time.
Dr. H: Consulting with your physician prior to the trip is especially important with children who will likely have less flexibility in changing their infusion schedule because they are more at risk of dehydration than adults.
Ann, as a HomePEN consumer, what needs to be in place before you travel?
Ann DeBarbieri (HPEN Consumer): The first step is to get a letter from your physician that explains why you are carrying needles, drugs and other medical supplies -- especially if you are traveling outside the country. I make multiple copies of that letter and put a copy in whatever bags they are going to find something unusual.
I typically carry my portable pump and one night’s worth of supplies with me in case I end up somewhere I didn’t plan to be. Have your homecare company ship the rest of your supplies to your destination. Have them arrive a day before you leave, so you can check to make sure the supplies have safely arrived (and are being refrigerated if necessary) before you even leave town. If you know approximately when you’ll be arriving on a certain date, you can also find out ahead of time who to pick up your supplies from. Establish a rapport with that person, as well as the person receiving your supplies, since they may be two different people. Traveling is very manageable, it just takes forethought and planning.
Audience [Parent of a 9 year old child on TPN, pediatric nurse]: It helps to think things through ahead of time, so you can anticipate problems. For example, if you are planning to infuse in the airport, recognize that you can’t take off your backpack to go through the metal detector. A letter from your physician could explain this for you and make communicating with security personnel easier.
Audience [Long term adult TPN consumer]: I’ve found it helpful to have the phone number of my homecare company with me when I travel, both the number of the branch in my hometown and the closest branch to my destination. So if there is a problem with my supplies, I know who to call.
Dr. H: Dr. Grant, say you hear from a consumer you don’t know who is traveling in your area. They need help acquiring supplies and can’t get in touch with their own physician. What would you do?
Dr. G: I would be uncomfortable since I’d be unfamiliar with their care, but I would try to get them what they needed. I would make every attempt to clarify things with their physician first.
Personally, I want to know if my patient is traveling. I give them my beeper number and wear my beeper for the duration of their trip, so my patient is never isolated from knowledgeable care. I would suggest that before traveling consumers inform their physician of their intended trip, and find out who and how to contact someone at their physician’s office if they have an emergency while traveling.
Dr. H: Being able to contact your physician is especially important if you require opiates. You’re not likely to get any help acquiring drugs like these from a physician unfamiliar with you and your medical status unless they can consult with your own physician first.
Audience [Adult TPN consumer]: You should also bring a letter that summarizes your medical condition and lists the medication you are taking, in case you have a medical emergency.
Audience [Caregiver of long term, adult TPN consumer]: Prior to your trip, find out who the TPN/EN experts are in the area you’re traveling to, in case you need care while you’re away and you can’t reach your own physician. This way you’ll have someone for the local ER clinician to consult with for knowledgeable care.
Dr. G: To find the center of expertise closest to your destination city, contact ASPEN [Phone: (301) 587-6315; web address: http//www.clinnutr.org] which can share its list of nutrition programs throughout the United States and in some foreign countries.
Dr. H: You can also call the Oley Regional Coordinator in the destination area to get their recommendation. [Call (800) 776-OLEY for an updated list of Oley Regional Coordinators.]
Question 3: Within the Oley family, a few people die each year. Because of this we often have questions about our mortality. We may also have questions about why another homePEN consumer passed away. There are no set answers to these questions, but I think it would be fine for people to share what coping mechanisms they’ve used to make these issues more manageable. We’ll begin with Ann since she is a consumer with a pre-cancerous condition and her husband is a Hodgkin’s survivor.
Ann DeBarbieri (HPEN Consumer): Having experienced both sides of this issue, I have to say it is easier for me to deal with the patient side, than to be the significant other looking on. What I’ve learned is to not let illnesses define who we are. When someone asks me about myself, it’s not that I’m not open about my medical situation, but that’s not who I am. That’s just a piece of what I have to live with. I’m an attorney. I’m someone who loves to go hiking, play golf, go roller blading, and do therapy work with my dogs. I’ve got a lot of interests. For me the key has been, when I am ill, I focus all my energy on dealing with that and getting better. When I am well, I focus all of my energy on my other interests. It allows me that respite in-between the tough times to regenerate, re-group, and realize why I fought so hard to maintain that quality of life.
Dr. H: Does anyone in the Audience have coping skills to share with us?
Audience [Long term adult TPN consumer, Regional Coordinator]: What comes to mind when you mention the losses we experience each year is this: I recognize that some consumers who were at last year’s Oley conference are gone, but more importantly, I look at how many people are here. We frequently look at the dark side, whereas when you look at the alternative, it’s much brighter.
Audience [Adult TPN consumer, nurse, health care consultant]: My underlying disease is genetic and two of my children now have it. I am determined that my kids will not live of life of illness. That they will live a full and positive life. I find it very important to pass on whatever information I can. I never had that. My mom died when I was six of the same disease, but I never knew she had it until I was diagnosed with it myself. I thought that was cruel. So I decided I was not going to do this to my kids. The interesting thing is that we’ve lived with this disease for many years, and I’ve had many problems, but last September my son-in-law died of asthma. In other words, we have lived all along knowing what the potential for our disease was and knowing we could die of the problem, but we hadn’t looked at that fact. So his death was awful, but at the same time it was helpful in learning to live life to its fullest.
Before I was diagnosed with this disease, I was a wimp. This disease has given me the opportunity to become somebody I never thought I could become, because I had to become an advocate for myself and for my kids....Being the people we are, given what we’ve encountered, gives us strength. Use that strength. A lot of people aren’t able to deal with the reality that we are all going to die at some point. But what’s important is how we chose to live the life that we have until that moment in time.
Ann DeBarbieri (HPEN Consumer): That’s a key point. We shouldn’t allow our illness to define ourselves. People die at all ages with no predictability. And the reality is, none of us has any guarantees. As a result, other than needing to focus on the need to advocate and to educate ourselves, we need to find other aspects of our life that are worth living for. That is what’s going to get you through.
Dr. H: I think it would be helpful if we had a spouse or parent share their perspective and how they deal with this issue.
Audience [Parent of a 9 year old child on TPN, pediatric nurse]: Often times I pretend nothing is wrong with my son. In the literature this behavior is called “normalization.” It’s something people with chronic illness do. We sit in denial most of the time. I don’t always walk around thinking my son has a life-threatening condition. I think professionals sometimes try to strip us of that denial, because they think it’s an unhealthy response, but it’s really a very healthy coping mechanism. When my son is climbing a tree, people ask, “How can you let him do that?” I have to take risks and I have to pretend. I cannot live on the edge all of the time. On the other hand, when he gets sick, it’s a shock to me again that I have this fragile child who could die, and I live in this high emotion for a few weeks. Then I feel myself going back into denial again. But that’s how I save myself and he saves himself, and that’s healthy.
Audience [Parent of a 5 year old child on TPN]: My son is on TPN, and honestly, what helps me get through all of this, is the support I’ve found through the Oley Foundation.
Audience [Adult HPEN consumer]: I’ve been living with cancer for 18 years, and I’m in total agreement about the need to live as positive a life as we can by finding what brings us joy and living in the moment. But I didn’t come to this realization until I had learned to face my fears. I used to be paralyzed by my fear of death....I needed a practical strategy to deal with the “what if’s.” It was only by facing my fears that I was able to move on with my life.
Dr. H: Dr. Grant, you and I are often asked whether a patient died of a complication that relates to their therapy by people who have every reason to worry. How do you handle that?
Dr. G: When we first sent patients home in 1968, ‘69, and ‘70, we really were saying, “We’ll prolong your life, but you may well die from what we are trying to do.” ...[Whereas now] when I go into the room of a potential HPN patient, I’m very positive. I say to them, “We have a therapy that can extend your life indefinitely. There are some complications, but they are unpredictable.” Sometimes we approach the issue without too much empathy about what the patient is going through...So I think from a physician’s view point we still have a lot to learn....On the other hand, I think you have something to learn. You’ve had a wake-up call and you’re damn lucky. You may live another 20 years with your wake-up call, whereas a friend of mine had a heart attack and may only live another two or three years.
My wife works in a retirement home for people over 80,...[and she says] there are three types of people there. The first are those that isolate themselves and never make friends in order to protect themselves, and they are miserable. The second type make friends at first, but as the friends begin to die, they withdraw and begin to feel depressed. The third group is what we need to be. [They] make all the friends in the world, appreciate what they have contributed and let a friend’s death be a wake-up call so they remember the value of their life and their friend’s life. Those are the ones that have fun. Their last years, how ever many there are, really have quality.
Question 4: Home nutrition support is complex and can affect all members of the Oley family: the immediate family, the extended family and the professional family that all have to be involved to make this thing work. Is it reasonable for these players to get involved in decisions about the consumer’s care? To what extent? Ann, who do you count on to help and how much of the decision making do you want to keep ultimately to your own counsel?
Ann DeBarbieri (HPEN Consumer): I think you’re right in saying that ultimately it’s the consumer’s decision, and that they have the final say. But having been on both sides of the situation, I know that others, like your spouse, can play an important role in making decisions. Let me tell you a little bit about how my husband and I have handled a couple of situations. Typically when we are dealing with a new situation, like the decision to undergo surgery for me,...we will go to the physician together. We go together because we’re usually scared and it’s good support. Second, and more importantly, when you’re in a crisis mode,...the circuits don’t always connect the way they should. Hopefully you will both be thinking of all of the critical issues, so what one of you doesn’t question, the other one might. Both of us have found this extremely helpful. The third reason we do it, is that the spouse in most cases has as much a vested interest as the patient does -- in a very different way. It’s reassuring to them that they understand everything that’s going on and that their concerns, issues and questions are being addressed....So for us, sharing access to the resources, whether it’s a physician or some other source, has been the most important factor.
The other thing that’s important for us, is the fact that we’ve established an understanding that we don’t hold back. You need to keep the lines of communication open both ways. You should both be comfortable laying everything out on the table so you can both understand, to the extent anyone can, what the other person is thinking and how this decision is going to weigh in their life.
Dr. H: I’m addressing this next question to Don Young, former President of the Oley Foundation. He has a fairly complicated situation in which he and two of his children have Crohn’s disease. So there is no way that things that relate to you, Don, can be kept entirely to yourself, and yet you are a strong, independent person. Where’s the line for you?
D. Y.: The thing is, the Crohn’s hit the kids at the same age as it hit me, in their mid-twenties. They became sick when they were mature. More mature than most of their peers because of growing up with me and my Crohn’s and TPN. I don’t think this is a typical situation. I stood back and waited for them to ask my advice after they had made their own decisions, particularly about surgery....Each of them had their surgery, each lost about the same amount of bowel, each recovered nicely....I guess this was kind of a test. I could have overwhelmed them and imposed my ideas on them. It took a lot of self restraint to stand back. Both of them made decisions I didn’t agree with at the time. Now if I had to do it over again, would I do it differently? No way! It is their life, and they have to live it. I’m not so smart. And suppose I had counseled them in another direction and things hadn’t gone so well?
Dr. H: Can we hear from some parents of children on TPN or EN? How big a role does the extended family play in your decision making?
Audience [Parent of an 8 year old child on HPEN]: As Mennonites, we live in a close-knit, isolated society. But our experience is also very isolated with a child on parenteral and enteral nutrition. Our community and extended family, because they have no experience, know very little of what we are facing. So most of our decisions are made between my wife and myself with the experience we have gained through the Oley Foundation. We also rely on information from the surgeon and the gastroenterology team at John Hopkins Medical Center.
Audience [Adult HPEN consumer]: I’ve had Crohn’s disease and short gut syndrome for about 25 years. A significant portion of that time, I lived alone or with my parents, and pretty much made all of the decisions by myself with information I gathered from various sources. When I married, I found it difficult to give that up -- to be able to share and have the kind of intimacy that I think you really need to have. I’ve worked on that over the years, and I think now we’ve achieved a give and take, but the decision making is ultimately mine. I think it has to be that way, but it is a cooperative effort, a sharing of ideas, and needs and so forth.
Audience [Adult EN consumer]: My husband died unexpectedly when my children were small and I don’t have a large extended family. So I’ve basically made all of my decisions, myself. But my son, who is 20 years old, has now become very interested in what I am doing, and has asked to be more involved. This has been really hard for me because I’ve always done things myself. But I also don’t want to turn him off. Even though ultimately I make my own decisions, I’ve been talking to him more, and asking his opinion. It’s been helpful to have a second perspective and I’m grateful for his support.
Dr. H: Dr. Grant, how much do you do to try and size up a family who you’re considering recommending this very long and complicated therapy to? How much do you think you take on the role of deciding how strongly to push it?
Dr. G: Each patient and family are different, as you know, and each one we approach a bit differently. My intent to start enteral or parenteral therapy is to make an individual independent of health care as much as we can -- out doing his own thing and expressing his individuality. So I emphasize very strongly that this is an individual decision. But it can’t be done in a vacuum. I’ll never explain this process without whatever extended family he or she has there in the room listening to the same thing. After I’ve explained it thoroughly to everyone there, I turn to the patient and say, “This is your decision. This is your life. Whatever decision you make will be right. Take some time, talk it over with your family and I’ll come back later.” So I push throughout the conversation, for an individual decision....[The other issue is informed consent.] We keep saying more and more that this is a valuable thing in medicine. It may or may not be. It’s a two-edged sword. In five or 10 minutes in a patient’s room, I’m supposed to convey all the information so they can make an informed consent on a major decision in their life. So I try, whenever I feel comfortable doing it, making the options very clear. At the end of our discussion, I leave the family with my medical opinion as to what should be done. This way the patient and their spouse can feel more comfortable with their decision, because they know that I recommended it. I think it’s important to have someone you can fall back on and say, “I trust you.”
Dr. H: Any concluding remarks?
Ann DeBarbieri (HPEN Consumer): To sum up, I think it’s important to keep things in perspective. My mom died of the same disease I have, when I was five and she was 34. I had probably my most serious medical crisis just before my 34th birthday. And for a short period of time, I was convinced that, like my mother, I was going to die at that same age. The point being, that when my friends whine and complain about turning 40, I say, “Forget it man. Every year is a victory!”
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