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Newsletters: Specialized Nutrition: The Patient’s Perspective (Part I)
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Specialized Nutrition: The Patient’s Perspective (Part I)

Elizabeth V. Tucker and Darlene G. Kelly

This chapter is a dialogue between Elizabeth (Liz) Tucker an experienced home parenteral nutrition (HPN) consumer and Darlene G. Kelly, a gastroenterologist and medical director of a large HPN program. Although it refers specifically to HPN, most of the issues are also relevant to the home enteral nutrition (HEN) consumer. Occasionally we mention HPEN, which refers collectively to home parenteral and enteral nutrition, or the HPNer, another name for HPN consumer.


Introduction to Home HPN Before the Fact

EVT: My introduction to HPN happened approximately five years before parenteral nutrition became a part of my life. A young woman who also had Crohn’s disease, a gastroenterologist, a colon and rectal surgeon, and I were on a Public Broadcasting System (BS) program about Crohn’s the young woman didn’t look particularly healthy and most of the things she had to say about being on HPN were fairly negative. My thoughts were that I was very glad I wasn’t on the therapy and hoped that I would never need it.

Three years later, after yet another surgery, my doctor brought up the subject of HPN. I was having a great deal of difficulty keeping my weight up and he thought that time had come to be evaluated. As anyone with a chronic illness can tell you, keeping a sense of control is very important. After learning about HPN, it became the experience that would represent Crohn’s disease finally winning the battle to live a “Normal” life. I said absolutely and positively “NO.”

During the next two years I tried everything I could think of to keep my weight up. I ate at least 4,000 calories a day and drank high-caloric fluids to try to quench my insatiable thirst, but I still ended up going into the hospital for rehydration and nutrition supplementation more and more frequently. Rehydration solutions were not yet being used for people with short bowel and no one told me that all the high-caloric, high-osmolar drinks (mostly sodas) I was drinking were only making the problem worse. When the hospitalizations for rehydration and nutrition began happening every two to three weeks, I finally said “uncle” and let my doctor know I was willing to be evaluated. I was mentally and physically ready for a change.

My feeling is that the process would be much different if I hadn’t know what TPN was ahead of time, made the decision myself and not had it suddenly made while I was hospitalized for something else, i.e., surgery, disease. Enteral nutrition was never brought up as an option because I had already lost too much small bowel surface (thus severe malabsorption) so it was felt that enteral feedings would not do any good.

DGK: My introduction to home HPN as a clinician came a few years after Liz started her HPN. I was newly appointed to the medical staff, and it became apparent that a large portion of my time would involve managing our HPN or consumer’s point of view was something I had to learn through experience. Much of what I now know came from individual contact, such as my interactions with Elizabeth (a.k.a. Liz) and others over the past 13 years. Additionally, my interaction with the Oley Foundation (to be discussed later in this chapter) has been a tremendous learning activity. The art of HPN is clearly something that must be acquired by the clinician. This can be greatly facilitated by developing the attitude that you will learn from your patients who have a much better vantage point than you, the clinician, do!


How the Clinical Decision is Made and Presented

EVT: After my 12th or 13th surgery I let my gastroenterologist request that the HPN team come and talk to me about going on the therapy. They also did a number of tests to determine whether PN was really necessary - they said it was. I still wasn’t convinced, so they let me go home and try again.

After two weeks of recuperation I flew to San Francisco and spent a week in the Big Sur. I sunned by the pool, drove to Carmel, hiked through Point Lobos, and rested a great deal. However, by the time I got back to Minnesota, it was apparent even to me that I was very weak and dehydrated. The only sensible thing to do was call the TPN physician and say “okay, you were right” - so I did.

The next day I was back in the hospital being nourished and rehydrated. A day or two after that I had my first Hickman catheter placed. Fortunately the surgeon who placed it had a good sense of female priorities. I enjoy wearing low-cut tops and the placement allowed me to continue to wear the things I like. I also have an ileostomy and the catheter wasn’t too long. I would be grateful for his expertise when I got home.

DGK: The story of each consumer’s start on home nutrition support is different. For some it will be a matter of going from a normal diet and good health to a catastrophic event that makes HEN or HPN an absolute necessity. For others it will have been a progressive course that eventually has led to weight loss and chronic dehydration. When severe malabsorption has been clearly demonstrated and use of less expensive and risky alternatives to HEN and HPN are no longer possible, the steps toward considering these therapies should be begun. Whatever the story it is important that the patient be integral to the decision that specialized nutrition is required. A clear explanation of what HPN/HEN is, what care becomes necessary, how this will change the person’s life, what possibilities are for doing “normal” activities, what the risks of the therapy are, and how the medical system will need to be involved is necessary.


Introduction of the HPN Team

EVT: While I had already met the HPN doctor, nurse coordinator, pharmacist, dietitian, and social worker, the most important member of the team after I got my catheter was the nurse who did the training. She was great. After I had the catheter placed, she came in and said we started my training that very day. She went through the process of hooking up that evening and unhooking the next morning; then she said it was my turn. After all the emphasis on sterility, I was really scared, but with her encouragement I did just fine. By the next evening I was doing it on my own.

Every day the TPN doctor and his entourage would come to see me. Little did I know at the time how important they would be as my years on HPN have rolled by - all 18 years.

DGK: Our HPN team consists of multiple health-care professionals who work closely together to ensure safety of the HPN consumer. The center of the team is the consumer him- or herself. Others involved in this team are the medical director(s) of the team, nurse coordinator, pharmacist, nurse educator, social worker, dietitian, surgeon or interventional radiologist who places the central venous access, primary care provider, and the home care company clinicians and reimbursement specialist. Each has a unique and critical part in the consumer’s success and future.



EVT: While I do know consumers who are trained either as outpatients or at home, I believe I was fortunate to be trained while still in the hospital. I was given a very large notebook covering all aspects of HPN from catheter placement to how to work the pump, as well as sterile dressing changes, procedures for hooking up, unhooking, infection and other potential problems. Next, a nurse/trainer showed and explained the procedure to me several times. Only then was I expected to do the various procedures myself.

DGK: In our program, nearly all new patients complete training while they are still hospitalized, or in some cases parts of training may be done in the outpatient setting. In order to do this, it is important that the primary physician is “tuned in” to the needs for this type of nutrition support and initiates the process while there is still a need for hospitalization. In some programs, all of the training is done in the home by the come care company. Both of these approaches were discussed in a recent paper (2,3). There are no comparative studies examining the outcomes of these types of training approaches.

While the patient is training, the infusion duration is decreased in a stepwise manner, usually to 12 hours, while labs are monitored closely, especially in the very malnourished who are at risk for refeeding syndrome. This also allows us to be assured that fluid balance is achieved.

Each patient is provided with an extensive manual that provides background, step-by-step instructions, troubleshooting instructions, and most importantly, phone numbers for questions and concerns. The patient is encouraged to make phone calls to ask questions rather than wondering what is going on or worrying about it.


Insurance Issues

EVT: Insurance issues can tend to be the last thing HPENers think about once they have been accepted into their therapy, but, in my opinion, it is once of the more important issues and should be dealt with on an ongoing basis.

Enteral nutrition doe not have the overwhelming cost on a daily basis that HPN can generate, but keeping track of those hospital and home care generated costs is still important. The lifetime maximum insurance coverage can still be a problem, if there are numerous hospitalizations. While enteral nutrition is much less expensive therapy, it is often much more difficult to get insurance companies or HMOs to reimburse for it compared to HPN. One of the reasons that I have been given for this is that insurance companies consider enteral nutrition as just nutrition or food, a replacement for normal diet, but HPN is considered a life-support system. Several people I know on enteral seemed to have less difficulty if the use of a “J” tube of a “G” tube was required, as opposed to a nasogastric tube. What concerns me about this approach is whether there are people placed on HPN because of insurance issues, when HEN is what they really need.

With HPN daily costs, antibiotic costs for infection, any nursing costs or hospitalizations, a lifetime maximum can be consumed quickly. Some companies will raise their maximum if they are self-insured and have a valuable employee, but that doesn’t happen often. Some states have high-risk pools that can take up the slack if a person has gone through their lifetime maximum, but not all plans are the same. Many states do not have plans at all and the states that do have a wide variance in cost, what they cover and their lifetime maximums.

Every HPEN consumer should do his or her best to make sure bills are accurate, overpayments do not occur, and to be knowledgeable about the options should another insurance plan be required. You can never be too informed!

DGK: I once attended a panel discussion of several consumers of HPN and HEN. I was very disappointed to hear these people laughing about how they just threw their bills into the wastebasket. It is important to discuss financial issues with the patient at the outset. This may help the person to realize that he or she has a responsibility to keep close tabs on charges and on the lifetime insurance allotment. In Liz’s case her awareness of this proved to be critical to resolve issues related to incorrect billing that could have resulted in reaching her lifetime maximum years before this should have occurred.


Going Home: Transition From the Patient Role to the Consumer Role

EVT: I remember most of what occurred the day I went home from the hospital as though it were yesterday. A friend picked me up at the hospital and drove me home. I had brought my new pole-mounted pump and pole with me. Two home care nurses were waiting for me with several very large boxes and a small refrigerator. The boxes contained PN and all the ancillary supplies I would need. We talked about the role of the home care company; providing my PN and supplies on a two-week schedule, when I wanted my deliveries and I signed some papers.

After they left I took everything upstairs to my bedroom, put the pump and pole next to my bed, then sat and just looked around the room: the refrigerator in my bedroom, the large box of supplies, and the pump and pole next to my bed. I remember thinking that it had looked so much different in the hospital room and that it didn’t look as though it belonged here in my bedroom. I had a nice, long, cry, all the time wondering how I was going to manage this alone and why me anyway. Once I was through with my good cry, I put my mind to ways I could make it work. I put the refrigerator in a large closet in my spare bedroom Added shelves in that closet and arranged all the ancillary supplies to they were readily available. Next I brought a drop front desk and put it into my bedroom, cleaned it out and put the things I would use every day in it. That left the pump and pole by my bed, and I knew I would just have to get used to that. I did.

DGK: Having a nurse from an experienced nursing agency at the home when the consumer first arrives can alleviate many of the initial anxieties. This also allows the individual to have professional input into laying out convenient and safe areas for cares to be done.

One of the lessons I learned from Liz is that when she is in the hospital she is a patient, but when she is not, she is a consumer. I feel that Liz’s comments about having her supplies out of sight were a very healthy way for her to react to her new therapy. This probably has played a major role in her ability to be a consumer in the home setting, not a patient! Some people want their home to look like a hospital, and this makes it difficult for them to step out of the sick role rather than to be an individual who just happens to be on HPN or HEN.


Integration of HPN Into Everyday Life

EVT: Part of the process I went through when I came home from the hospital was the first part of integrating it into my life. I have known other HPN consumers who leave their ancillary supplies in boxes in their living room and rummage through them when they need something. I couldn’t do that. I wanted very much to resume my normal life and while HPN was part of that, I wasn’t going let it be my entire life. Being organized and able to shut the closet door or desk front when I wasn’t on HPN was psychologically important to me.

After that I made adjustments as they came along: Learning to get the pump, pole, and me down the stairs to let my dog out, waking up in the night to go to the bathroom and remembering to take the pump and pole with me, clearing air-in-line alarms without really waking up, gaining my strength, and going back to work.

DGK: For individuals such as Liz, adjusting the PN to fit into his or her life is very important. I often tell the patient in the hospital that he or she should “run the PN,” the PN should not “run his or her life.” I feel this is a healthy attitude that is associated with better outcome for the consumer, as well as the consumer’s family. However, it is not uncommon for consumers of HPN to make the therapy the center of their lives. The clinician should be alert to this and try to discourage this approach. Unfortunately, for some consumers that use their health issues for secondary gain, HPN can exacerbate this problem. This often results in unhealthy family interactions.

I also emphasize to the patient that he or she can adjust the timing of the HPN infusion to the activities of the day. It is not unusual for patients to have been told that they absolutely have to run the PN from 7 p.m. to 7 a.m. Anything we can do to make this therapy fit into the consumer’s life will be helpful in encouraging compliance.


Routine Communication with the HPN Team

EVT: Shortly after I came home from the hospital, I called the manager of my home care provider and made an appointment to go through the company. It was an excellent experience. I met the persons who would be calling me for my orders, saw how the PN was mixed and met the people who mixed it. I got to know the people in the warehouse, the driver who would bring it out to me, and became friends with the nursing manager and company manager.

The benefits I got from doing this were enormous. I got to meet and see the people and the process. It made it more understandable and clear. They got to put a face and personality with a name. I believe that enhanced our ability to work together for the mutual benefit of both.

My interaction with members of the medical team has been even more important. Working with the physician, the nurse coordinator would call me to check on how things were going, as well as to schedule blood work. The blood tests were initially every week, every two weeks, every month, and finally, when I was very stable, every three months. The pharmacist helps me when I have questions about drugs or components in my PN and, with the team, determines the exact formula of the PN.

These people are the first ones I call if I have any problems or questions. Am I running a high fever or does it spike after I start infusing my PN? Am I feeling a little out of sorts even if I am taking extra fluids? Any unusual occurrence can be brought to them for their expertise. If they haven’t heard from me for a while, I can count on them calling to check up on me!

DGK: We often ask the home care company’s nurse to visit the patient while he or she is still in the hospital. This allows the person to have a link to the company before going home and, I believe, makes the transition to home an easier one.

The article is reprinted with permission from “Intestinal Failure and Rehabilitation: A Clinical Guide”. Copyright - CRC Press, Boca Raton, Florida.

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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