Educational Webinar: Managing Quality-of-Life Aspects for Consumers Discharging to Home Care Settings on Enteral Nutrition Support

Good afternoon. Thank you for joining us today. My name is Brandon Martin here at McKesson Medical Surgical. I'm so excited to welcome you to today's presentation: Managing Quality Of Life Aspects For Consumers Discharging to Home Care Settings on Enteral Nutrition Support. Brought to you by Cardinal. Before we get started, I'd like to direct your attention to our disclaimer. While you're reviewing that information, I will remind you that this presentation is being recorded. Within a day or two, you can expect to receive a link to rewatch the presentation. If you have a question, feel free to enter it into the Q&A panel at the bottom left corner of your webinar window at any time, and we will do our best to answer at the end of the presentation. One more disclaimer to read here. Our speaker today is Linda Lord, nutrition support nurse practitioner and educator with the University of Rochester Medical Center in Rochester, New York. Miss Lord has been a clinician in acute care and clinic settings, as well as a researcher, author, and educator with over 50 publications. She has been involved with the American Society for Parenteral and Enteral Nutrition, ASPEN for about 40 years, and served as chair of the nurse section. She was also awarded the Nursing Discipline Research Award, the Distinguished Nutrition Support Nurse Service Award, and status as a Fellow of Aspen. Her interests include holistic and interdisciplinary nutrition support, assessments, plans, and follow-ups that incorporate patient-identified goals and quality-of-life measures. Linda, thank you so much for joining us today. Thank you very much for that nice introduction. And hello, everyone. I'm happy you can join us. In this webinar, I'll be presenting the quality of life aspects for individuals being discharged on Enteral Nutrition support quality of life. This is a sense of well-being. It's how you feel about your day-to-day experiences and whether your needs are being met. For enteral nutrition, these needs would be physical. They'd be educational. Clinician and family support needs adaptation to lifestyle changes, finances and emotional state. How can we as clinicians enhance the quality of life for our home nutrition support consumers and also for their families? My disclosure for this important discussion is that it's being compensated by Cardinal Health for educational purposes. Here's the disclosure slide. The objectives of this is to identify the multiple conditions that are involved in the home enteral nutrition, care process, and key points to effectively prepare for and deliver this therapy. It's also to describe troubleshooting enteral access device complications. And I've divided those into routine versus urgent versus emergent issues. And to recognize and enhance the quality of life experiences for home enteral nutrition consumers, from the hospital to the home. The purpose of home enteral nutrition is to provide a liquid formula or blenderized food through a tube. This is for individuals in the home setting who have an accessible and functional gastrointestinal tract, but they are unable to meet nutrition needs by mouth. So this could be supplemental to their diet or it could be sole source nutrition. Home mental nutrition, it can be short-term or it can be lifelong therapy. It does require an oral access device or feeding tube for administration, and this could be inserted short-term, nasally as a nasogastric tube or a nasal intestinal feeding tube. It could be a g-tube inserted directly into the stomach, a J tube inserted directly into the small bowel, or a G/J tube which is inserted into the stomach, but has a lumen that's threaded down into the small bowel. Home enteral nutrition is increasing just like other home therapies, as healthcare systems shift delivery of medical care from acute care to home settings. This is due to technological advances such as telemedicine, remote monitoring. Patients want to mitigate the risk of hospital-acquired infections, and they also may want to have care in the comfort of their own homes. It's for cost containment purposes, aiming to free up beds and emergency rooms for more acutely ill patients and the growing aging population that brings with it more chronic conditions that may require more hospital stays. For these reasons, at times the access devices inserted in the outpatient setting and planning needs to be coordinated accordingly. The home enteral nutrition process benefits from inter-disciplinary collaboration, education and communication between a variety of clinicians. We have physicians, advanced practice providers like PAs and NPS, nurses, pharmacists, dietitians, social workers, speech-language pathologists, among others. To enhance the home enteral mental nutrition process, we need clinicians that are knowledgeable in enteral nutrition support. Many of us as clinicians, have not had in-depth education on nutrition or nutrition support, and we need to learn from each other, and we need to learn from valid online resources and peer-reviewed literature. Once we have knowledgeable clinicians, institutional policy and procedures can be developed and educational tools can be developed. We need timely communications between clinicians and between clinicians and the consumers and families. We need to develop therapeutic alliances between clinicians and consumers and families. These are relationships that are collaborative and trusting and sharing a valid clinician and consumer online sites and then also ongoing monitoring. If you have these great plans and goals, you want to make sure that they're being followed and they're being adjusted as needed. Before even considering home nutrition support, it's really important to make sure that all strategies have been tried to improve oral intake and nutrient absorption. This is interdisciplinary also. We could have diet alterations by dietitians that incorporate the patients' food preferences and review food and ingredients that they should avoid that would cause GI upset. Follow food consistency recommendations for those who have swallowing difficulties, altering timing and/or portion sizes of meals. Instead of putting three huge meals in front of a patient, maybe five smaller ones, and including calorically dense foods considering adding gravies and sauces, this can give you more calories for the amount of food that's being presented. Then addressing food insecurity. So food insecurity is a lack of consistent Access for enough food for an active, healthy lifestyle. So these could be due to financial constraints, inability to get to the shop or food for transportation issues, maybe due to extreme climate conditions. Food assistance programs are available, so these need to be looked into. Maybe providing oral nutrition supplements for example, in between meals and also treating the underlying medical condition. Patients may be able to eat enough, but they may not be able to digest or absorb enough. They may need medications or therapies to address that appetite stimulants if appropriate, and psychological interventions if appropriate. However, if the need for nutrition is urgent and they're severely malnourished, strategies to improve oral intake may be initiated after the enteral access device or feeding tube is placed, enteral nutrition support has begun. Addressing ethical aspects in early discussions, if appropriate, should be done. I'm not going to be going into that for this discussion, but there is a reference short at all that's on the reference list that talks about an Aspen position paper. This is ethical aspects of artificially administered nutrition and hydration. I'm going to start with the consumer scenario. This is Mr. AB. He's a 70-year-old African American male. He was just diagnosed with ALS. After several months of worsening dysphasia and dysarthria, he has lost £12 over the same period and he's mildly dehydrated. His BMI is now 23. He still has good muscle strength and his extremities. He's a father of two children who live out of town. His previous wife and mother of his two children passed away seven years ago from breast cancer. Up to this point, he has been in pretty good health. He's been involved in the church community, exercises regularly, and consumes a regular diet mindful of good nutrition. Mr. AB remarried a year ago to a Philippine female, now Mrs. CB, who is 66 years old, in good health, supportive of her husband and speaks a little English. She immigrated from the Philippines, has two adult children who are married and live nearby with their families. So Mr. AB's current social circle has primarily been with his wife's Philippine community. This is all good information to get when you're doing your assessments. So a poll question; what should be the next step in enteral nutrition care process for Mr. AB? Should we schedule a G-tube to be placed as soon as possible and begin tube feedings because we know he's lost weight and he's having some difficulty swallowing, and we want to optimize his nutrition status. Should we ask Mr. AB to return home and begin a three-day food intake record for analysis by a dietitian? Should we review the new diagnosis of Mr. AB and ask if he would like Mrs. CB involved with initial discussions? If so, offer a Philippine interpreter or let Mr. AB know that despite his weight loss, his BMI is within normal limits and his nutrition is not a concern at this time. I believe the next step would be to review the new diagnosis with Mr. AB and ask if he would like Mrs. CB involved with initial discussions. If so, offer a Philippine interpreter. This is because we need to ensure that the individual and their support persons have a very good understanding of the underlying medical condition, along with the available treatment and therapies needed, and this is a condition that's going to be affecting their nutrition. After they have a good understanding of that, then you can explain how the nutrition status is affected by this particular medical condition. Then you can go on to discuss how improved nutrition can help with certain aspects of the medical condition. Now this is going to vary on the condition, but some things to think about is their improvement in energy level, improvement in muscle strength and endurance, better mood, motivation and resilience. A better hydration status, which is also going to help their mood and maybe achieving some weight goals. If they have upcoming treatments, they're going to have better tolerance to the treatments. If they have some open wounds, they'll have better wound healing. And they may have improved life expectancy. Now, for this patient with ALS, feeding him early is actually been shown by the literature to improve life expectancy If you meet the higher calorie needs of ALS patients early in their course. As soon as the need for mental nutrition is determined, the medical team needs to collectively determine the needs of the consumer. This is enhanced by established protocols and high-level communications between the various expert clinicians. Just very briefly, dietitians, as we know, bring knowledge in food and nutrition science and its contribution to the disease. Nurses are prepared to perform hands-on skills at the bedside using intellectual knowledge. Pharmacists are experts in medication management and potential food-drug interactions, and they would be very helpful if our patients needed to have some of their medications through their feeding tubes. Providers like physicians and advanced practice providers, they primarily lead healthcare teams. They are well-versed in clinical and patient care and provide prescriptions and then the handoffs upon discharge. Speech-language pathologists determine the aspiration, risk, and strategies for safe swallow and discharge planners are very helpful. They evaluate medical emotional support needs, insurance coverage, living arrangements, abilities for self-care, and need for home health nursing. We really need to be supportive of them in all these endeavors. So talking a little bit about the development of these home enteral nutrition protocols and education tools. So I want to start out by talking about nutrition risk or malnutrition screening tools to identify these individuals that are malnourished or even at risk of being malnourished. Because they may be having some upcoming treatments, like radiation therapy, to the throat that's going to affect their swallow, neuromuscular diseases that are going to also affect their swallow, or they may have a new high output ileostomy. These identified individuals at risk can then be referred to a dietitian for a nutrition assessment and plan. I just put here the Aspen Malnutrition Solutions Center identifies several of these malnutrition screening tools for various patient populations. And these are used pretty routinely in hospital settings, but not so much in outpatient clinics. It would be nice for clinics that have patients that are at risk for malnutrition, such as neurology clinic that follows ALS patients to have screening tools in place. Then develop your institutional protocols, this would be between medical conditions that are at risk for malnutrition and nutrition specialists so that timely referrals can be made to the nutrition specialists. This could be in the form of a decision tree or a step-by-step protocol, and develop education tools for clinicians and consumers that are standardized and accessible and included in your protocols. These could be education checklists that are useful for clinicians. It could be written instructions and additional hands-on education. This would be ideally in real time for clinicians and their families and identify change champions. These would help develop and update these home enteral nutrition guidelines. The next poll question is; which of the following disciplines would be the most helpful to Mr. AB in providing a safe discharge on home nutrition? The respiratory therapist to educate because we know at some point in his disease he's going to be having some respiratory difficulties which will interfere with oral intake. The physical therapist to recommend a routine exercise program. The occupational therapist to educate on how to perform small tasks because we know eventually he probably will have some muscle weakness in his upper extremities and might need help in using eating utensils or, the speech-language pathologist to evaluate speech and swallow capabilities and recommend appropriate diet and therapies. The answer to this would be the speech-language pathologist. Because he's already having some problems with his speech and having some problems with his swallow. This would be the most appropriate referral to make at this time so that this person can recommend appropriate diets and therapies to help him improve his speech and swallow. Initial consumer clinician discussions. Once the need for enteral nutrition support is determined, and ideally before the feeding tube is inserted, you want to clarify whether the two feedings are going to be a supplement to the to the diet are intended to provide full nutrition needs. And you want to anticipate the length of need. So it could be lifelong. It could be temporary. Review insurance coverage is vitally important. You need to know ahead of time whether the formula that's being recommended and the supplies needed are going to be covered by insurance, or how much will be covered. And you need to find an infusion pharmacy that's going to be able to provide these for the individual. For the individual, you would want to outline a brief overview of the logistics to home enteral nutrition. Don't get too complicated early on, but you do want to talk about the enteral access device about what it is, where it's inserted, what they're going to feel during insertion, how to care for it after insertion. A little bit about the troubleshooting. You want to talk about the formula, the supplies that are needed, and the agreed-upon administration schedule. And take your time to answer questions and identify their concerns and their goals of therapy. You also want to, at this point, seek out clinicians available out in the community and the outpatient world that's going to not only follow the enteral nutrition and do nutrition assessments, but also someone to follow the enteral access device. And you want to inform the consumer prior to the discharge of these. Next poll question. After a swallow evaluation, Mr. AB was informed that he was at moderate aspiration risk and careful consumption of small amounts of a dysphagia diet was recommended. So a G-tube is recommended to supplement his oral intake. He refuses the G-tube because he knew of someone who had large leakage issues and had to have the G-tube removed. The most helpful initial supply to Mr. AB would be, G-tubes can have complications, but we will review ways to prevent them. Also, we'll have a clinician monitor your G-tube after discharge, so you can contact for any problems. Or leakage is normal with all G-tubes, and rarely does a G-tube need to be removed for leakage. It's your choice, but you may die of aspiration or malnutrition if you do not get the G-tube. I have cared for lots of patients with G-tubes and never heard of it being removed for leakage. So I feel that the appropriate answer would be to let the patient know that, yes, the G-tube can have complications. We're going to talk about those ahead of time, how to prevent them. What's the risk of those complications? It's important to let them know that after they're discharged, they are going to have a clinician that they can call and ask questions of and to follow the G-tube after discharge. The home nutrition plan you want to review and align the consumer and the medical team goals of therapy and create a mutually agreed upon plan to achieve them. What are individual factors that may influence the plan? Some of them are physiologic and clinical. It could be their underlying medical conditions. It could be their ability for self-care. Psychosocial would be the supports that they have, their financial resources, the time they have to fit this into their lifestyle. They may still be working. Cognitive, and this is usually obtained during education. Their perceptions, their attention span, their memory problem-solving. And then cultural. The language, the food preferences that they may have. Core values and spiritual practices. This is an is an example that I just put together of a potential home enteral nutrition checklist for education for the patient before they go home. You can review it, and you can also use it or update it to fit your own institution. But you would review things with the patient and family that need to be checked off related to the feeding tube and the care of the tube. Related to the tube feeding regimen, how their supplies are going to be reimbursed for and how are they going to get them and what agency is going to provide them. Psychosocial aspects; how it's going to adapt to their usual lifestyle. You want to talk to them about that and monitoring afterwards. Scheduling your follow-up appointments. It's going to be important where you're going to put this checklist. Is it going to be in the medical record? Where is it going to be located? Who's going to be able to view it and who's going to fill it in? And it's also going to be important that your institution ensure that it's going to be filled in. It's not just sitting there not being used. Choices for enteral formula. As we all know, there's been an explosion of commercialized enteral formulas. The more recent additions being organic, plant-based, blenderized foods free of certain allergens, among others. So institutions may be under contracts with enteral formula suppliers, and they may use the enteral formulas that are standard or specialized that are included in the contracts. Home infusion pharmacy should be able to supply most formulas. However, they may have difficulty obtaining the less common ones and insurance may not provide adequate coverage for some. All that needs to be looked into. Some consumers may request formulas that are not easily available to the pharmacy or not covered by their insurance plan. Or they may want to do homemade formulas with blenderized foods that they can prepare at home. It's important to look at enteral formula viscosity. Homemade blenderized foods are some commercial formulas, like those that are highly concentrated or have a high fiber content, or are composed of blenderized foods may be quite viscous. So clinicians need to be aware of appropriate formula preparation. The formula and water flush administration and the enteral access device type and size to minimize slow infusion times for those that have gravity bags controlled with clamps and also sludge build-up and tube clogging, you would want to avoid those things. In order to keep sludge from building up and tube clogging, you want to make sure that you follow guidelines where water flushes should be a minimum of 30 cc's prior to and after each feeding. 30 cc's every four hours during continuous tube feedings. And if you have a continuous tube feeding, you may want to consider an automatic flush pump. These can deliver a water flush every hour, and these are very useful for smaller bore enteral access devices like nasally placed tubes or jejunal feeding tubes. A poll question again, Mr. AB consented to a G-tube placement, so he and Mrs. AB discussed tube feeding formula options. Mrs. AB feels very strongly that her husband received a homemade blenderized tube diet made of her Philippine foods that she's familiar with and knows provides good nutrition. What would be an appropriate response to this? Homemade blenderized tube feedings would be very difficult for you because it's time-consuming and there are so many tube feedings out there that are already made. Blenderized foods may be something we can explore. Let's review that option with a dietitian who is familiar with blenderized tube feedings. Or you should use Blenderized homemade foods for tube feeding. It's the healthiest way to receive nutrition, or you should not consider that choice. The homemade blenderized foods have a high risk of clogging your tube. And while some of those answers could be somewhat true, the answer should be that blenderized foods might be something we can explore. Let's review that option with a dietitian who is familiar with blenderized tube feedings. A little bit about homemade blenderized tube feedings. there are some practice recommendations from the American Society for Parental Nutrition, and that's on your reference list. I highlighted a couple of important points from that document that blenderized feedings require analysis of their nutrition profile because sometimes they're not complete nutrition. Sometimes you have to give a vitamin or minerals along with those. Then you need to determine your enteral access device. They are only approved now the homemade ones through the gastric route, not the jejunal route. And you do need enteral access device that's 14 French or greater. The delivery method can be bolus. It can be intermittent drip and it can be pumped. But you have to look for the ability of the pump that can handle blenderized tube feedings. You need to determine the food preferences and intolerances before putting these homemade formulas together. Identify resources, the time that is needed, the skill that is needed, the ability to shop for the appropriate foods and how you're going to store blenderized tube feedings. It's necessary to get the appropriate equipment, like a blender with high-powered motor. And then if you're going to use a pump again, make sure it has the ability to handle a blenderized tube feeding formula. Food safety measures, aseptic techniques, and preparations, which is true for any formula preparation. Hang time at room temperature is only up to two hours, so that's important to know. And then refrigerate any unused portion can be used for three to four days, but if you do freeze it, you can use it indefinitely as long as you freeze it within 24 hours. Choices for infusion schedules are bolus or gravity drip. Use three to four feedings a day. It can be administered prior to family meals to suppress the appetite, but sometimes it could be administered along with family meals if you want to get your nourishment at the same time. If oral intake is encouraged, you may be able to give the feeding formula after meals, depending on how much the person eats. If they eat three-quarters to a full meal, you may not give any formula a quarter to a half meal consumed, maybe give one cards. And if less than a quarter consumed, give two cards. You can give schedules like that that make it a little bit easier to deliver these formulas in addition to a meal. If you do have a gravity feeding, it's a good idea to place the roller clamp near the patient so that they can adjust the rates of it as tolerated. Pump tube feedings; if they're on pump tube feedings, inpatient attempt, and intermittent gravity or bolus schedule before they go home if you're able to that's going to be a lot easier for them to administer at home. But if they do require a pump outpatient make sure you allow for some time off the pump. Try not to not to send your patients home with a 24-hour schedule. At least give them a couple of hours off for bathing, personal hygiene. And then in those cases give them an advancement schedule so that if they're able to advance their feedings to a 12 or 14-hour schedule by increasing the rate a little bit every day and decreasing the time attached. Then if oral intake is being liberated in those cases, consider a nocturnal tube feeding so that you discontinue it a couple of hours before your first meal to help promote an appetite. Food requirements is something that I'm somewhat passionate about because patients can end up in emergency rooms from dehydration much quicker than they can end up with malnutrition. I think it's very important to give good fluid the day the person goes home. Some of the fluid equations that have been used in the past are CCS per kilo, like 30ml of water per kilogram. But there's actually no valid source for that. It was extrapolated from animals and studies on children. These are a couple of equations that look at age and weight. And they better determine the fluid requirements for individuals. The ones that are milliliters per kilogram. If you look at studies and they're usually in nursing homes, these may tend to underestimate fluid needs. But there's also the holiday Seager equation that's adapted to adults. That's here, and these tend to overestimate fluid needs. Me as a clinician and others we tend to like to calculate free water needs by both of these equations and taking the average of the two. And that's usually been spot on for our patients when we send them home. And then, of course, you always have to add additional water and electrolytes for other fluid losses which are listed here. You also need to look at how much fluid they're taking orally. When you plan to meet fluid needs, you got to determine the volume of the formula of the water that's in the formula, which is anywhere from maybe 70% to 85%. and then add that to what they're drinking. Then any of the remaining fluid requirements are typically given as water flushes before and after the tube feedings and medications. Handling of formula and supplies aseptic technique. This lowers the risk of contamination and contamination of formulas that can cause abdominal discomfort, bloating, and diarrhea. Sometimes these are attributed to other things, but it's actually because the formula is contaminated. Make sure you wash your hands, use clean work surfaces, and adhere to formula hang times at room temperature. And those are all listed here. They go all the way from closed system, ready-to-hang formulas which can hang from 24 to 48 hours, to what I spoke about earlier, which is the homemade blenderized formulas, which is only two hours. Until delivery bags replace them daily. There is no need to flush with water in between the feedings that are given intermittently but be sure the formula is completely infused before adding new formula. No top-offs. And enteral flush syringes, make sure you separate the plunger and barrel. Rinse with water and allow to air dry in between uses. Medication delivery via enteral access devices. Medications is a common cause of tube clogging, and they're the most difficult to unclog. So it's very important that medications are delivered properly through tubes. Individual medications must be approved for the enteral access device route, whether it's gastric or small bowel and the tube French size. You can locate guidelines on lexicon or up-to-date. Right now there's a group together that's been updating individual medications specifically for feeding tube use. So you may find as time goes on, more and more information on that. There are different forms of medications, tablets. They must be immediately released. They must be crushable. And again they must be approved for delivery through feeding tubes. Do not crush extended-release capsules. You may release too much medication at once when you give it to patients. When medications are supposed to be delivered slowly through the intestine capsules. Some may be open and capsule contents diluted in water. But it has to be approved. And sometimes they have to be put in another solution other than water. And liquids; a lot of people like to use liquids, but they are very typically high osmolality because they add sweetening agents and flavors for people who take them by mouth. So they typically do require further dilution with water, at least one to one, or sometimes even more. And you want to dilute with purified water. So this is water that is free of minerals and contaminants that can interact with the medications. Sterile water is one form of purified water that they use in hospitals and clinics, but at home, they can use distilled water. It doesn't have to be sterile. They can get a jug of distilled water and use this to dilute their medications for delivery through tubes. You do want to flush your feeding tube with a minimum of 30 cc's of purified water before and after medications, and a minimum of 15 cc's purified water in between medications and medications need to be administered separately so they don't interact with each other. You want to simplify your education, so offer to use household measurements. I know we use metric measurements in the hospital, but some people would like to use household measurements like a cup rather than 240ml. For adults, you want to keep two cartons or half cartons of formula as much as possible, and the number of water flush syringes, instead of having them measure everything out. Consider ready-to-hang formulas for pump fittings. Identify the total amount of formula water to be administered per day. If a person can't get their full amount in one feeding, they're in a rush or something, they need to know what they need to give in a full day so that they can do some make-up later in the day. Then consider using the barrel of a syringe as a funnel. This isn't always well known, but it's so important to talk to patients about that because it can be such a time saver, especially with medication delivery. You take the plunger out of a syringe and you attach the funnel to the end of your feeding tube, hold it up and you can pour your formula in that way. Or you can have your medications all set up with maybe a glass of water. You put a little water in one medication, water next medication. Instead of using the syringe to have to draw it up and plunge it in and draw it up and plunge it in. So that's a nice tidbit for you to know. Then consumer education tips explore their previous experiences, establish their learning needs, self-care abilities, their readiness to learn. Evaluate health literacy is very important. If they can read written instructions, can they measure and safely administer enteral formulas, their water, their medications? And can they navigate the health care system to meet their needs? Forms of education could include verbal. It could be written, but no more than an eighth-grade level. Videos can be used. Hands-on demonstrations, always very helpful. You want to consider the individual and families preferred style of learning and ask them about that and ensure that education tools that you're using are standardized all throughout your institution so that no conflicting information is being shared. Confirming understanding of the education. So you can give all the education, but is the individual and family understanding it? So you need to assess learning throughout the learning process, not just at the completion of your full learning activity. Teachback is very helpful. So after education, learners are asked to explain or to demonstrate the health information in their own words, just to make sure you're all on the same page and understanding it. Chunk and check. This is a teach-back explanation or demonstration that is performed frequently throughout the education process. So you don't wait till the end, but as you have small bits of information, you check back and make sure that they're Understanding it as you go along. And apply the knowledge and skills in real-time, if possible, in real-world situations. So, for example, have the consumer prepare and administer formula right in front of you or provide self-care for their own enteral access device while they're still hospitalized, or to perform these skills with simulation training if possible. Valid online resources for consumers and clinicians, I do want to talk to you about the Oliy Foundation. They're available at oliy.org. This is a very robust and engaging group. They consist of clinicians and consumers for pediatrics and adults. They supply education support and connections between consumers by way of information on their website, webinars, annual meetings. They have camps. I would highly encourage you to look at that site. There are also websites that people don't think about for conditions that are at high risk for malnutrition, like the ALS Association, Association of Gastric Motility Disorders, Crohn's and Colitis Foundation Syndrome.com. So these sites also talk about nutrition that's very specific to that disease state. Industry is very important too. There's many manufacturers of enteral formulas and access devices and such that sponsor nutrition support, training for clinicians, educational materials and sessions for clinicians and consumers just like this one right now that's sponsored today. And then for clinicians, there's the Aspen organization, American Society for Parenteral and Enteral Nutrition. It's at nutritioncare.org. There's a lot of things on that website that are free to clinicians to look at public policy initiatives and a lot of the standards of practice. And then lift echo is one that I like to look at. It's international. It's free. You do have to sign up for it. It's on many Tuesday afternoons. It's for an hour, and they talk one-half hour on didactics and one-half hour on patient presentations. And it's for pediatrics or adults who have intestinal failure. Education for the enteral access device is extremely important. This receives the least amount of attention when educating consumers receiving home enteral nutrition, and causes many consumer problems. You need to educate them on the type, the care, the troubleshooting that should occur. And this should be done, like I said before, placement whenever possible and then again after placement. Written instructions should include the enteral access device type, the tip location. Whether it's gastric or jejunal and who inserted it, the placement date and very important to put them on a replacement schedule. Note whether the enteral access connections are legacy or unfit, and if both are being used in the same geographical areas, it's going to be very highly important to talk about the difference between the two. There is a site here you can find out more information about that. Because they will not connect with each other. Then troubleshooting guidelines. I did divide this up for the enteral access device into routine urgent and emergent. But this can also be updated depending on what your facility does as far as educational endeavors for these patients. Routine, this would be a situation that can occur with an accident access device, where the consumer or family can be educated to perform treatment at home. They may have a little bit of redness at the site. They know to apply some skin protectant creams or lotion or creams or ointments. If there's a little bit of bleeding at the site caused by some trauma, but it stops within minutes, that's not to be too much of a concern. A little bit of granulation tissue, if they know how to treat that, let's just say with a steroid ointment, minor yeast appearing infections, if they know how to treat that with an antifungal. As far as dislodgement, if they've been educated after their first tube exchange in a medical setting to insert a new tube and they've been educated to do this, then this can be inserted and done at home. If they've been educated on how to adjust their external bolster, let's say on G-tubes, and it becomes too loose or too tight, they can adjust it themselves. If they've been shown how to de-clog measures for their tube. I'm not going to get into all of those, but there's ones where you can take water and go back and forth within your tube or use some tube-clogging solutions. If they've been educated on that and they can successfully de-clog their tube, then these would be all routine things that can be taken care of at home. The next one is urgent, and this often results from a routine problem that gets worse with time. It requires a call to a clinician who manages the enteral access device but may require a clinic visit. If your routine things aren't working and the site has increased erythema, induration enteral pain skin breakdown caused by increasing drainage or pressure sites. Growing granulation tissue that's not responding to therapies at home, bleeding that doesn't stop. If it becomes very loose or it becomes indented into the skin, it's hard to rotate it. For these types of things, you would need to call a clinician or make an appointment. If the two becomes clogged, cracked, or dislodge and you have not been educated to replace it, but you may have been educated to put a temporary tube just to keep the site open until you can get to someone who can replace it. This would be an urgent condition if you did have a replacement clinic available, but it might be an emergent condition if you don't have a place to go to. The next would be the emergent issues. And these are serious complications that require a visit to emergency department. The person is unable to rotate the tube. It may be partially sticking out in the stoma track. They can't administer, or they're having a lot of pain when they're putting in prescribed therapies. This is possible buried bumper syndrome and you need to go to emergency room for that. Tube is clogged, cracked or dislodged, they were not trained to unclog the tube, or they were not trained to replace the tube or putting a temporary tube in. You need to go to the emergency room immediately, because those stoma sites can close within a couple hours. Uncontrolled bleeding, extreme pain resistance. When you're replacing, the tube at home, but you're having difficulty with it, you potentially have created a false track and need to go to emergency room. Then with G/J tube dislodgement, these must be replaced with imaging. So you need to go to the emergency room or the interventional radiology department. Quality of life considerations, it includes living conditions like where they live, their proximity to healthcare facilities whether they have running water, refrigerator or clean table storage capacity for the formula and supplies and a working phone lifestyle, their meal times, their work schedules, social activities, travel. And the only foundation is very helpful with a lot of these things. They have a tab called resources. And if you go to that, it has life to the fullest and it gives many helpful hints on how to travel with enteral nutrition support. If I didn't mention it earlier, the Oley Foundation is free to consumers and to clinicians. Sleep deprivation can occur if you have overnight pump feedings or you have to get up and refill the feeding bags. This could lead to sleep disruptions causing fatigue, depression, anxiety, neurocognitive dysfunction, social decline, and physical alterations. You would want to look for feeding pumps that are quieter and have LED screens, which are dimmer. You want to consider closed system formulas, which would require less formula refills, and you want to investigate portable backpacks to hold the formula and pump instead of using an IV pole. A second slide on QOL considerations. Support from family caregivers. Community-valid online support groups are important to obtain dealing with supply shortages of medical nutrition. Shortages are including intravenous fluids and additives enteral formulas and supplies. These have all been due recently and over the years to natural disasters, manufacturing plant shutdowns, among other reasons. This can be quite devastating to those who depend on nutrition support for their nutrition and hydration needs. Clinicians need to respond as soon as possible to formula refills and authorization requests. Maintain good relationships with your enteral suppliers so you can call them when in need, and view the Aspen and Oley websites for national shortage updates and public policy initiatives to deal with these. As consumers stay ahead of the formula, need and communicate tolerances to formulas to the clinicians. And also to view the Oley website, there's updates on the formula supplies and also angels for change is something that can be contacted if you're having out of a formula and you need one very quickly. And there's also public policy initiatives on that site. The next eight slides I have here are going to show you different publications that I found recently on quality of life-issues. There's been some interviews here of patients on enteral nutrition support and clinicians. There's also literature reviews and studies that have been done with quality-of-life pools to be used. I don't have time to go over each of them individually for the sake of time, but I did want to present them here for you so that you can read through them and also review them, because they'll be on the reference list at the end. Some of the highlights of these are going to show the importance of education of patients before they go home. The education of the enteral access device, which a lot of them have had issues with making sure that they have coping skills to deal with this. Just to let you know, you're going to be teaching your individuals things, but also they're in a grieving process, too. They're going to be losing the ability to do certain things like eating and enjoying food. So you're going to have to help them with that. Deal with it, express their concerns, but also show them that they can readjust to that and reframe that so that there are other still things that they can enjoy, that they can substitute for those types of things. Just so we have time for some questions and answers, I would like to summarize all of this, that there needs to be a therapeutic alliance developed between the consumer families and clinicians. This is a trusting, collaborative relationship and this is very essential for a successful home enteral nutrition experience. Show empathy for the situation. Listen to the customer's concerns, identify their supports and use them, and formulate mutually accepted goals and plans. Provide hands-on education for them and continuously assess their learning throughout. Share with them valid online resources so they don't go to sites that provide inaccurate information or information that could be harmful. Continuity of care, schedule all the follow-up appointments for them for home enteral nutrition and the enteral access device and management with knowledgeable clinicians. Clarify who to contact for what. Identify communication capabilities in between their scheduled appointments, like who they can call for what and make sure you provide timely responses. In addition to physical assessments, show interest in quality-of-life issues and consider quality-of-life assessment tools. Which I didn't go over individually, but they are addressed in some of the publications that I shared with you.