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Nutrition support is a big enough challenge to a patient in a healthcare setting, but those trying to manage nutrition support at home face special issues.

Pizza. Steak. Corn on the cob. Apple pie and ice cream. Fried chicken, chocolate chip cookies, and Thanksgiving dinner at Mom’s house. Picture the many foods you enjoy and how our holidays and social gatherings include food. Now, imagine that your doctor has informed you that you will no longer be able to eat again. And, as if that’s not bad enough, you will now have a feeding tube placed into your abdomen. Summer at the beach won’t be the same.

Those of us who work with patients on home parenteral and enteral nutrition (HPEN), must consider the profound life changes they face. For some not versed in the medical nutrition field, the thought of feeding through a tube conjures images of sickly, helpless patients, bedridden and kept alive with unsightly tubes and mysterious solutions. While some patients have poor quality of life, there are many others who are able to continue their daily activities, some even able to travel and work outside the home while on HPEN. RDs can identify and provide assistance with psychosocial and lifestyle issues before and during HPEN therapy. Some common issues include emotional and psychosocial difficulties, disruptive feeding schedules, noncompliance, recreational eating, and high-risk situations.

The HPEN Patient
Current demographic data is lacking, but in the 1990s, it was estimated that more than 40,000 patients used home parenteral nutrition (HPN) and more than 150,000 used home enteral nutrition (HEN) in this country.1,2 For some, HPEN is temporary, usually more than three months, helping to maintain health and strength while undergoing other medical or surgical therapies. Others rely on HPEN for several years or the rest of their lives. Evaluation of a patient’s home and social situation, psychosocial needs and risks, and learning ability prior to the start of HPEN are part of established standards of practice.3 Patients and caregivers must be willing and able to correctly administer HPEN in a safe environment. (See sidebar on page 44.)

Living With HPEN
Ella* is 75. She cannot eat. She has a history of laryngeal cancer, laryngectomy, and progressive dysphagia. She walks her dog each morning and does usual chores such as laundry and housecleaning. She regularly meets for activities with her senior group, cooks for family gatherings, and enjoys playing with her great-grandchildren. Four times each day, she pours a can of formula and some water into her gastrostomy tube (G tube). For Ella, HEN has helped her maintain an enjoyable lifestyle. Her attitude is matter-of-fact and positive.

For Carl*, age 45, it is far more difficult. He has severe gastroparesis and chronic abdominal pain. His history includes surgeries for duodenal ulcer and gastric outlet obstruction. He lives alone. Each day, he connects his jejunal feeding tube (J tube) to a pump and infuses HEN at a slow rate nearly all day. Then, he fills the feeding bag with water and infuses that for several hours during the night. His abdominal pain becomes worse at times, causing him to skip feedings or stay in bed for much of the day. He has fallen several times as a result of hypotension due to dehydration. Despite this, he maintains his weight, but says, “This is like a nightmare.”

Karen*, age 57, has less than 12 inches of small bowel remaining after multiple intestinal resections years ago because of an abdominal tumor. She eats two or three very small meals per day and sips fluids. Each night, she connects her central venous catheter to a 1.5-liter bag of HPN that infuses over 10 hours, mostly while she sleeps. She works part time during the day and lives with her daughter. Her attitude is pleasant and realistic. She says, “I’m hanging in there, doing fine.”

Robert* has Crohn’s disease and short bowel syndrome because of multiple bowel resections in the past. He can tolerate small amounts of oral food but must drain his ileostomy bag two to three times each day. He lives alone. It is difficult or nearly impossible for him to afford all his medications. He states, “I’m just trying to find money to help me stay alive.” He finds the work of caring for his ostomy and drainage bag, as well as the HPN infusion, nearly overwhelming and complains of sadness and depression, despite use of antidepressant medication.

Emotional and Psychosocial Difficulties
Poor body image, anxiety, and fear about feeding tubes, sensory deprivation, grief, and anger are problems experienced by patients using HEN.4-7 HEN patients have also reported sleeping difficulties, problems with sexuality, depression, and both positive and negative effects on social relationships.5-7 Likewise, patients using HPN have reported anxiety, depression, stress, problems with mobility and sleep, and limitations in social life and travel.8,9 In a British study, satisfaction with family life, social activities, and sex life declined greatly during illness and significantly improved after initiation of HPN, though not nearly to pre-illness levels.10 Smith reported that lower quality of life was associated with length of time on HPN, decreased coping skills within the family, and financial problems. Higher quality of life was associated with better self-esteem and quality of relationships.11

Clear explanations and education on the purpose and details of the nutrition plan and periodic telephone or e-mail follow-up can help relieve fear and anxiety and assist with feeding concerns. Patients should be given ample opportunity to ask questions, voice concerns, and participate in their care plans. Depression, financial troubles, and other problems can be identified and patients can be directed to further help. The Oley Foundation (see sidebar on page 44) helps many patients. Those involved with this national support organization have reported better quality of life and less depression than those not affiliated.12

Feeding tubes are unattractive and, for some, especially the young, low profile “button”-type tubes are preferred for gastric or jejunal feeding. For administration of feeding, low-profile tubes require brand-specific adapters or extension tubes that can wear out over time, so patients will need a supply of these. Regular G tubes may occasionally be too long and cumbersome, interfering with activity, clothing, and body image. Patients can be referred to a gastroenterologist if a G tube needs to be cut shorter, or if they wish to be evaluated for placement of a low-profile tube.

HEN Feeding Schedules
Without adequate RD involvement, patients have occasionally returned home with feeding schedules that, while suitable for hospital nurses, were disruptive to home life. For patients with G tubes, transition to home will be easier by switching to syringe bolus feeding and initiating home teaching at least one week prior to anticipated discharge. Feedings should be scheduled to fit as conveniently as possible with the patient’s home and/or work routine in simple, one-can increments, adjusting as tolerated. Water flushes should be described in familiar terms, such as cups, syringes, or quarts.

Gravity bag or pump feedings are not necessary for gastric feeding unless there are significant problems with nausea, fullness, reflux, vomiting, or dumping syndrome with the syringe bolus method, or if the patient or caregiver has difficulty pouring formula into a syringe. Pump feeds are usually necessary for patients with postpyloric or J tubes. Most patients who need a pump prefer overnight feedings. Several patients with J tubes have so disliked pump feeding that they used gravity bag or many small syringe boluses of one quarter to one full can of formula at a time and tolerated it well. An ambulatory backpack, which carries the battery powered pump and a small bag of formula, is another option. Unfortunately, insurance companies usually do not cover the cost of enteral backpacks.

Use of calorie-dense formulas may be necessary for those with limited time to feed and high calorie needs. One man with head and neck cancer was anxious and losing weight, refusing to take more than three bolus feedings per day. He stated, “It’s too much trouble and takes too much time.” In another case, a man with pancreatitis, still active as a construction worker, was losing weight, despite use of prescribed J tube feedings at home. These feeding plans were adjusted by using a calorie-dense formula and extra water flushes to ensure adequate hydration.

Compliance With HEN
Patients often take less than prescribed amounts of HEN and some even lie about how much they use. Reasons for noncompliance include gastrointestinal (GI) discomfort, physical pain due to underlying illness, misunderstanding of instructions, erroneous advice from others, depression, and dislike of feeding via the tube. Periodic phone calls to review the plan and ask questions about usage, tolerance, concurrent medical treatments, and body weight are valuable, as well as keeping records of the amounts of formula sent to patients’ homes. Home nurses can be helpful in reinforcing instructions and reporting formula usage, body weight, and tolerance of therapy.

Some caregivers, eager to help their loved ones, may decide to administer vegetable and fruit juices, vitamin supplements, and other nutritional products via the feeding tube. It may help to inform them that the enteral formula itself contains adequate amounts of vitamins and minerals. Anything that may result in toxicity or clog the feeding tube should be discontinued. Some patients have taken juices, milk, cola, coffee, tea, and strained soups or even preferred specific flavors of formula in their feeding tubes. If this practice does not interfere with nutrition goals, it can—in a small way—improve a patient’s satisfaction with HEN. Care should be taken to avoid very hot or cold liquids and follow with water flushes.

HPN Schedules and Compliance
Most patients on HPN choose a nocturnal feeding cycle so they can be free of the pump during the day. A few prefer daytime feedings. HPN cycles can be adjusted from 14 hours to as low as eight to 10 hours per day. Nutrient and fluid needs may alter with changes in activity level, fistula or ostomy output, and climate. For example, a patient complained of weight loss, thirst, and weakness after he began doing yard work in the summer. Noncompliance can be dangerous, as lab results and outcome can be affected. Complaints include frequent urination at night, trouble sleeping, hunger, thirst, and weakness. Weekly phone calls by the RD and pharmacist, with discussion about these issues, can be helpful. Fluid and nutrient content and duration and timing of the feeding cycle should be adjusted to meet lifestyle and physiologic needs and prevent subjective complaints.

Recreational Eating
The expression on Barbara’s face dropped, and so did those of her family members seated around her bedside. “But she wants to eat and drink,” her daughter explained. I had told this patient it may be easier for her if she decreased her oral intake. Barbara had a bowel obstruction and was soon to go home with HPN. A G tube had been placed for drainage. She complained about leakage of the tube that connected her G tube to the collection bag. It stood to reason that avoiding food and drink would alleviate her problem. Clearly, I was wrong. Barbara wanted to eat, regardless of the fact that everything she ate ended up in the bag. She just wanted the tubes to stop leaking. Eating orally was a quality of life issue, not a nutritional one.

For patients who can still swallow food but have non-operable bowel obstruction, severe motility disorders, or major bowel resection, G tubes for drainage (“venting”) can be helpful to relieve nausea and vomiting and in some cases to allow recreational eating. The tube should have a large enough diameter (24-french) to allow for easy drainage.

One man had the majority of both his large and small bowel surgically removed because of thrombosis and occlusion of the blood supply to his GI tract. Only his stomach and a short portion of duodenum remained, and a venting G tube was placed. While subsisting on HPN, he continued to eat his favorite foods (well chewed or pureed) and beverages while his stomach contents drained into a bag.

High-Risk Situations
Prior to being discharged with HPEN, patients should be screened for problems such as alcoholism, drug addiction, mental disorders, or an unsuitable home environment.3 The presence of a central line could allow convenient access for intravenous drug abuse. An enteric feeding tube could be misused for administration of alcohol or other drugs. A patient or caregiver with mental illness who seeks to cause harm could have ample opportunity for causing bloodstream infection via a central venous catheter. Bleeding or serious complications could arise from displacement or removal of a central venous catheter or a newly placed enteric feeding tube. HPN therapy is more complicated and carries much more risk than HEN and could not be used in situations of homelessness, or a home that lacks electricity, clean water supply, telephone access, or adequate refrigerator storage.

Psychosocial and quality-of-life issues can be identified and managed before and during HPEN therapy. A patient’s response to HPEN depends on many converging issues, making each situation unique. The underlying illness, social support, duration of therapy, physical pain, concurrent medical treatments, ability to eat orally, and financial issues all play a part in the patient’s satisfaction and outcome. RDs can help by providing clear explanations, education, and ongoing follow up for patients and caregivers. Adjustment of feeding schedules, formulas, and equipment should be done to accommodate patient lifestyles, tolerance, and preferences.
* Names are fictitious.

— Theresa A. Fessler, MS, RD, CNSD, is a nutrition support specialist working in critical care, medical and surgical inpatient, and home care at the University of Virginia Health System in Charlottesville, Va. She has worked with nutrition support for 15 years.

Some Common Indications for Home Enteral Nutrition (4)
Dysphagia or blockage:

• Head and neck, or esophageal cancers

• Trauma to mouth, throat, and/or gastrointestinal tract

• Neurologic disorders or injury

Small bowel feeding:

• Pancreatitis

• Severe gastroparesis

• Gastric outlet or duodenal obstruction

• Feeding distal to an enterocutaneous fistula

Some Common Indications for Home Parenteral Nutrition

• Complete bowel obstruction for which surgery is not appropriate

• Short bowel syndrome

• Radiation enteritis

• Enterocutaneous fistula, with inability for distal enteral feeding

• Severe motility disorders

• Ischemic bowel

Oley Foundation
800-776-OLEY

www.oley.org

• Regional and national conferences for home parenteral and enteral nutrition (HPEN) consumers, clinicians, and industry representatives

• “Lifeline Letter” bimonthly newsletter, free of charge for HPEN consumers

• Regional support groups

• Equipment exchange

• Ongoing Quality of Life study

References
1. Howard L, Ament M, Fleming CR, et al. Current use and clinical outcome of home parenteral and enteral nutrition therapies in the United States. Gastroenterology. 1995;109:355-365.

2. Delegge MH. Demographics of home parenteral nutrition. J Parenter Enteral Nutr. 2002;26(Suppl):S60-S62.

3. American Society for Parenteral and Enteral Nutrition Board of Directors and the Standards for Specialized Nutrition Support Task Force. Kovacevich DS, Frederick A, Kelly D, et al. Standards for specialized nutrition support: Home care patients. Nutr Clin Pract. 2005;20:579-590.

4. Silver HJ, Wellman NS. Family caregiver training is needed to improve outcomes for older adults using home care technologies. J Am Diet Assoc. 2002;102: 831-836.

5. Srp F, Steiger E, Gulledge AD, et al. Psychosocial issues of nutrition support, a multidisciplinary interpretation. Nurs Clin North Am. 1989;24:447-459.

6. Living with enteral feeds: An exploration of the physical and psycho-social issues. The Oley Foundation. Nov/Dec 1997.

7. Roberge C, Tran M, Massoud C, et al. Quality of life and home enteral tube feeding: A French prospective study in patients with head and neck or oesophageal cancer. Br J Cancer. 2000;82:263-269.

8. DiMartini A, Rovera GM, Graham TO, et al. Quality of life after small intestinal transplantation and among home parenteral nutrition patients. J Parenter Enteral Nutr. 1998;22:357-362.

9. Malone M. Longitudinal assessment of outcome, health status, and changes in lifestyle associated with long-term home parenteral and enteral nutrition. J Parenter Enteral Nutr. 2002;26:164-168.

10. Elia M, Russel C, Shaffer J, et al. Report of the British artificial nutrition survey- 1999: British Association for Parenteral and Enteral Nutrition, Lincoln, United Kingdom.

11. Smith CE. Quality of life in long-term total parenteral nutrition patients and their family caregivers. J Parenter Enteral Nutr. 1993;17:501-506.

12. Smith CE, Curtas S, Werkowitch M, et al. Home parenteral nutrition: Does affiliation with a national support and educational organization improve patient outcomes? J Parenter Enteral Nutr. 2002;26:159-163.