vol. 5 No. 5 October1990

Journal of Pain and SymptomMonogemat

297

Abby S. Bloch, MS, and Patricia Brown, RN Clinical Nutrition Support Team, Memorial Sloan-Kettering Cawpr Center, New York, New York

Abstract Recent advances in nutrition support methods now ogler home patients the y&&lily of majntu~n~ngnut~‘t~on~~~~q~c~ when intu~~eis ~~~~~orn~ed. t_Jsingeither enteruk or ~r~ter~lfeed~~ ~11~~~ ~~f~~r~~te ~~~0~1~~ ~t~r~ts to ~G~~~~e nn improved quality ~~~~~e at home. Outgoesfor rn~n~g~m~ntofler a zr&$evariety ~~cho~ce.~ ~n,~eed~ngmethods, formuiations, delivery systems, rates and scheduling as well as services provided for a given need. Team management of these patients is necessary to txrsureproper medical care cand support. J Pain Symptom Manage 1990;5:297-306.

Nutrition support, enteralfeeding, par-enter-alfeeding, home nutrition, tubefeeding, total pflrenteral nutrition

Recent advances in nutritional support methods now make it possible to provide the full nutritional requirements either by enteral or parenteral nutrition. These nut~tional support modalities can be utilized by the patient without help, thus allowing independence and an increased sense of well-being, Patients requiring home enteral or parenteral feeding can be restored to full functional capacity, including full employment and traveling if their underlying disease does not impose limitations. When these therapeutic modalities are utilized appropriately, complications can be kept at a minimum. The successful implementation of home nutrition~ support modalities depends to a

Address refwint rpguesl~to: Abby S. Bloch, MS, Coordinator, Clinical Nutrition Research, Memorial SloanKettering Cancer Center, 1275 York Avenue, New York, NY 10021.

Q U.S. Cancer Pain Relief Committee, 1990 Published by Elsevicr, New York, New York

large extent 0-4 teamwork addressing the m&ical problems, appropriate instructions to the patient or family, social problems, and financial arrangements. Patients may require home nutritional support for a short period of time during chemotherapy, radiation, or other therapeutic modalities that may affect their nutritional state. In cases of severe or permanent dysfunction, longterm nutritional support has to be offered, Current methods of home nutritional support include enteraf and parenteral feeding. Enteral feeding should be utilized whenever the gastrointestinal function is intact or only partially impaired with enough preserved capacity to enable digestion and absorption of adequate amounts of nu~ien~, Parenteraf nutrition is utihzed in situations with extensive dysfunction of the gastrointestinal tract. This article focuses on the needs and management options for meeting the nutritional requirements of the home patient.

0885.3924k90/$3.50

Nutritional assessment should be a part of the general medical examination of the patient. Indicators of the nutritional status used clinically and as research tools are listed in Table 1.I The ability of these indicators to predict complications of malnutrition or guide nutrition man-

Nutritional Awwment Historyand physicalexamination Weight ICXS Decreasein regular food intake actor of m~~~~t~u Weakueas Musclewasdag Findingssuggestive of specificnutrients deficiencies Anthropomerricpmeters Triceps skin folds (rne~u~ of body fat) Miiarm muscleci~umfe~uce (measureof skeletal muscle) Percentageof ideal body weight Laboratoryparameters

Creatinine- height index (measureof skeletal muscle reserve) Serum proteins: albumin, p~alb~min, t~nsfe~n BloodIevelsof nutrients (traceelements, vitamins, minerals) Body composition Total-bodypots&urn (whole-bodycounter)

Tool-my nit~~n uneaten activation) Tiny water (3Hor *H dilut~n) Bone content of calcium (photon absorptometq, neutron activationanalysis) CT indiis of muscle. fat, bone Immunologicparameters Reactivityto skin tests Total ~ph~~c count &rum ~rnu~ob~ins Nutrient balancestudies Nitrogen balance Trace ekment and mineral balance Energyexpenditure

tests Musclefunction testing (voluntaryor by nerve

Foci

stimulation) Froteinturnover (stable isotopic enrichment) Fat turnover (*(c-p&&ate turnaver) Carbohydratetumovw (1%or sHz glucose) ~~~n~~ PC or %2glucose) Glycemltumover (p-stage glycerolinfusion) Enzymeactivity{e.g., ghuathion mxi&se activityn&cts selenium status) FNXIIShike Brennan’ Table 59-6,2034.

agement is still controversial. Pn the clinical setting, the history and physical examination remain the best indication of the individual’s nutritional status. Nut~tion and dietary assessments performed by a clinical dietitian should supplement the information obtained from the patient’s medical history. Home nutritional therapy can then be planned based on the medical and nutritional ~ui~rnen~ or the ~tient~ Recent weight loss in excess of 5%, poor food intake, severe malabsorption, anticipated gastrointestinal dysfunction occurring as a side effect of antineoplastic treatment., abdominal surgery, severe diarrhea, or dysmotility are indications for nutrition support. ~~ratory data, including serum albumin, and blood levels of vitamins, magnesium, phosphorus, potassium, zinc, and iron, are also useful in evaluating nutritional status. An evaluation of the patient’s physical status should include, bur not necessarily be limited to assessment of mobility and liiitadons in dexterity as well as visual limitations and strength. impairment in mobility and range of motion may alter the options available for types of nut~tional support.

Rot&~

ofAdmin&ration

Oral intake should be used for any patient who is able lo ingest nutrients sufficiendy to maintain an adequate intake. Calorically dense fuod choices, supplements providing complete nutrition to augment inadequate food intake, or iiquid drinks can be used to increase the caloric and nutrient density of the diet. Enteral fling is necessary in patients who are unable to consume sufficient nutrients by mouth but who have functional gastrointestinal tracts. Patients with head and neck cancer, esophageal tumors, short bowel syndrome, unconsciousness, stroke or paralysis, and anorexia are candidates for enteral fertcing. When selecting enteral feeding through a gastric or jejunal tube, goals of treatment, risk of aspiration and status of the gastrointestinal tract all must be considered.3 Nasogastric tubes can be used in the home for enteral feding. They are easy to insert and inexpensive. Commercially available tubes of polyurethane or other soft, pliable material are well tolerated by patients. Tubes come in var-

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Nutritional Su#nwt at Home

ious lengths (30-45 in) and diameters (5--16 French). Most companies provide insertion wires or stylets either preinserted or packaged with the tube. Enteral feeding tubes czm be piaced by a health professional and left, in the patient for use at home. 1: ~ernatively, patients can be taught to pass their own tubes daily with instructions on how to check for proper placement. If aspiration is a concern or feeding into the stomach is not a viable option (such as in patients post-gastric resection) the tube should be placed with its tip in the small bowel. Patients should not insert the tube themselves in such situations, and a radiographic confirmation of tube placement is needed before it is used. Once the proper placement is verified, the patient can go home with the tube in place. When long-term enteral feeding is anticipated or risk of aspiration is a concern, nasogastric and nasoenteric tubes are not desirable. In such situations, percutaneous endoscopic gastrostomy (PEG) or surgical gastrostomy tubes may be placed.* If a patient has a partial or total gastrectomy or tumor growth in the stomach region, a PEJ (percutaneous endoscopic jejunostomy) or surgical jejunostomy may be indicated.5 The percutaneous endoscopic tubes can be placed safely using mild sedation and local anesthesia. The procedure can be done in the Gl suite on an outpatient basis. At Memorial Sloan-Kettering Cancer Center, placement of over 500 endoscopic gastrostomy and jejunostomy tubes in cancer patients resulted in a low complication rate of about 2% and no mortality.*g5These results compare favorably with surgically placed gastrostomy tubes in patients with and without cancer. Therefore, cancer patients are not at increased risk from this procedure. For active patients requiring long-term enteral feeding, a skin-level gastrostomy device can be placed. These are better tolerated than regular tuhus and improve quality of life in active patients. If the hospitalized patient is a candidaLe for home enteral feeding, the patient should be started on the feeding several days prior to discharge. This enables the clinician to establish tolerance and resolve any metabolic pr&lems that might develop related to the feeding process. Feedings should be gradually increased in volume until adequate nutrition is achieved. If

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volume becomes a problem, the formula may be concentrated or the rate may be adjusted to accommodate the patient’s tolerance.

Form&

Selec

The type of formula selected and the feeding rate are determined by the medical status of the patient. More than 80 commercial formulas are currenlly available. The solutions vary in the type and amount of protein, fat, carbohydrate, lactose, fiber, electrolytes, trace elements, density and osmolality. Enteral products may be divided into two groups: those requiring full digestion and those requiring partial digestion.6 For those patients with an intact digestiveabsorptive capacity, general formulations of whole proteins, fat (primarily triglycerides) and complex carbohydrates can he used. These products range in caloric density from 1 cal/mL to 2 cal/mL, Formulas range from natural blenderized foodstuffs to isolates of macronutrients, primarily casein, soy protein and vegetable oils. They m;et the Recommended Dietary Allowances in vitamins and minerals if adequate volumes are used. In patients with compromised digestive capacity such as pancreatic insufficiency or decreased absorptive surface (short bowel syndrome), partially predigested formulas should be used. This group of formulations contain predigested protein, either as small or medium peptides with and without amino acids. Fats are usually restricted, with medium chain triglycerides combined with small amounts of triglycerides. Complex carbohydrates are provided in amounts to meet caloric requirements. The caloric density is generally 1 caYmL and the osmolality is higher than that of enteral solutions with intact nutrients. These formulas also provide adequate minerals and vitamins. Attention must be paid to patients with special metabolic requirements due to concurrent illnesses. These patients include those with malabsorption, cardiac dysfunction, renal insufficiency, liver disease, or other medical problems impacting on nutritional management. In these patients, the solutions used should reflect the limitations imposed by the patient’s condition. Some patients with specific metabolic abnormalities may need specialized formulations tailored to their individual needs using modular preparations of individual nutrients. For exam-

ple, fiber-containing iormulas are now also available for those patients prone to constipation, fecal impaction or slow transit time. With the myriad of formulas commerci~ly available today, any medial situation requiring manipulation of nutrients can be accommodated easily. Comparison charts and ready references giving formula compositions and characteristics are available.7

If the gastrointestinal tract is intact and functional, b&s feedings several times a day is the meth~ of choice. ladings are given three Lo six times ~iiy, Volumes can range from 200 to 500 mt or more each feeding, and are usually well tolerated. Bolus feeding: which can be done either with a syringe or run by gravity over 10-N min, are convenient, simple, and more closely mimic normal meal patterns.$ If the patient has a disorder precluding boius feeding, such as short bowel, a gastmjejunostomy, or severe malabsorption, continuous slow drip feeding may be more appropriate and effective. In continuous-dip feedings, the rate should be orally increased from an initial rate of 50 mI& of a full-strength nutritionally complete liquid formula or specialized formula as determined by the clinical condition of the patient. The rate can be increased by lo-25 mL/hr per day as tolerated until adequate volume is achiived. If volume becomes a problem, the formula may be concentrated or rate adjusted to accommotiate the patient’s toleranre. Diluting the formula is unnecessary since most enteral feeding formulas are at least 80% free water, Tilerefore, if the fuIl-stren~h formula is regulated by rate, the formula should be well tolerated. The enteral pumps now available for continuous slow drip tube feedings are easy to use. Pumps may be particularly helpful during ni~ttime feedings by allowing a steady drip rate regardless of the patient’s movements or positioning. Enter4 pumps may be rented or purchased depending on anticipated duration of use.

Patients who have fluid losses through dhrrhea9 vomiting, ostomy drainages, disease states

or medications are predisposed to electrolyte and nutrient losses. In such patients, careful monitoring of glucose, sodium, potassium, magnesium, phosphorus, and other blood constituents is needed. Losses must be adequately replenished. Addition of specific minerals to the formula may be required in patients with renal wasting of potassium and magnesium or patients with excessive losses of mineral and ~uids through GI fist&s or osto~es. Care must be taken to assure compatibility with the formula when adding supplements. Precipitation or separation of the formula may occur if the additives are too acidic. Physical incom~tibilities may also obstruct the feeding tube. Wl~en m~i~dons are administe~d through enteral feeding tubes, they should be given separately from the feedings, When possible, the liquid form of the medication should be used.

Once all relevant information is obtained, goals and objectives for home management should be documented in a discharge plan, Included in the plan are selection of formula, rate or volume to be consumed on a daily basis, progression of rate or volume, method of feeding, fluid requirements and selection of equipment and clinical follow-up. Logistics, such as procurement and delivery of items and storage of supplies, must be established* Therapeutic goals, such as weight stability, weight gain, or replenishment of a specific nutrient should be clearly stated.

The nutritional and medical status of patients receiving home feeding may change over time and this may necessitate appropriate adjust%ents in the methods of feeding, rates or formula. Follow-up clinical management, including patient retraining, is essential. Return clinic visits should be routinely scheduled, and telephone follow-ups by one of the nutrition support staff should be performed at 7- to IO-day intervals. At ~erno~al Sl~n-Kette~ng, the Nutrition Support Dietitian follows the patients as the liaison between the patients and physicians managing them.’ If enteral feeding is being curtailed, a trial of

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Nutritimal &.@ort at Home

oral intake should be attempted while the patient continues on supplemental tube feeding. If weight and clinical status is maintained during a trial of at least 2 wk, tube feedings can be discontinued. Three-day calorie counts oi- a diet history can establish actual intake. The feeding tube should not be removed until the clinician is confident that the patient is able to sustain nutritional status by oral ingestion alone. Some patients require ongoing supplemental tube feeding to augment inadequate oral intake. While oral intake becomes the primary source of calories and nutrients, tube feeding can be used to provide the additional nutrients required.

Insurance coverage and method of payment must be considered in the management of patients on home nutrition. Patients may elect not to uee a particular method of management if a financial burden will be placed on the family as a result. This issue must be resolved if successfill home care is to be achieved.* Most private insurance companies and government programs (Medicare, Medicaid) cover home enteral feedings if an appropriate indication is documented clearly. Most iariners require provider’s review and documentation of the need for home nutrition. With the array of enteral products available, the most cost effective, ciinically appropriate formula should be chosen. In the United States, third-party reimbursement requires considerable paperwork and physician documentation. Home care companies may be of help to the clinician and patient in expediting fmancial reimbursement. In the United States, guidelines for Medicare reimbursement for home enteral nutrition were established in 1984,s Documentation of a patient’s diagnosis, medical necessity for the enteral therapy, method of administration, formula, and required calories are necessary. Daily feedings of greater than 2000 kcal require specific medical justification. Physicians must certify that the patient’s condition is permanent, meaning that it will exist for a minimum of 90 days. Recertification is necessary after the first 3 mo, then every 6 mo for 18 mo, and then upon request by Medicare. Use of enteral feeding pumps requires documentation demonstrat-

301

ing that gravity or bolus feedings cannot be used.

A major advance in the United States has been the availability of home care companies that supply enteral feeding formulas, equipment, and medical supplies to the home patient.g If needed, nurses are available to assist in the home management of enteral feedings and other aspects of medical care. Blood can also be drawn in the patient’s home for various tests, thus facilitating follow-up and monitoring.

For the active long-term enterally fed home patient, replacement of the PEG or PEJ tube with a skin level, nonprotruding gastrostomy or jejunostomy tube offers patients an even more convenient means of nourishing themselves.‘O These tubes, referred to as buttons or low-profile tubes, can be inserted several weeks after the original enterostomy is placed.‘O Enteral nutrition may be used in conjunction with parenteral nutrition when transitional feedings are needed. This may occur when the patient is being weaned on to or off of one mode of feeding. Coordination and monitoring is essential when two modes of feeding are used simultaneously. If patients are unable to use the gastrointestinal tract to meet nutritional needs, then parenteral nutrition is the viable option for providing adequate nutrition.

The basic criteria for home total parenteral nutrition (HTPN) include: 1. Stable clinical condition 2. Inability to be fed by alternative means 3. Understanding and acceptance of need for long-term HTPN 4. Good support system-a family member willing and able to help 5. Willingness to learn procedures and ability to do such procedures

Physical Assessment Before initiating training in HTPN procedures, the patient’s physical status must be as-

sessed, &lf-administrati& of W’TPNrequires full cognitive capacity, as well 2s good muscle strength and dexterity. F=;iy intervention with referral to rehab%&m/physical therapy is impemtjve. The goal for all HTPN patients is that they reach a level of independence that allows them to carry on the HTPN procedures and return to the normal activities of daily living.

The program trains both the patient and family members in all procedures af HTPN. If the patient is unable to perform self-care, two rnern~~ ore trained. This system allows for a backup in case the patient or the primary helper is unable to perform the procedures. Even young children can be incorporated into the program by deletion of small tasks (~ll~ting tubing and other supplies) so that they do not feel left out of their care or the care of a family member. Children should receive an explanation of HTPN according to their level of comp~hension~ some children can be extensively involved in their own care, learning catheter use and even administration of HTPN. It is very important for any individual, no matter what age, to have a sense of elf-suffi~ency and be part of the program, Teaching is done by observation, demonstration, hands-on experience supervised by the nu~~~iner, and provision of written procedures for reference, All ~~i~~nts learn the prayer method of handling needle and syringe in a sterile manner and the proper method of at home. ts with venous access in place are required to demonstrate competency in handling their own devices. Patients without venous access ate informed about other options. If possible, contact is made with another patient who alnady has a catheter/port in place to allow the potential HTPN patient to see the device and ask questions. Once the chosen device is in place, the patient and family member are taught the appropriate care and m~a~ment,

medical condition and the metabolic requirements. The usual adult caloric ~ui~ments are 20-30 k&/kg body weight. Protein in the form of amino acids is given in the amount of l- 1.25 g/kg body weight. Fat intake is provided by lipid emulsions, which are a~iniste~d through a separate line attached to that delivering the parenteral solution. To prevent fatty acid deficiency, lipid is given at least twice weekly, If a patient is severely malnourished or has glucose intolerance, lipid is given daily as part of the total caloric need. Three-in-one infusions (lipid added to the total parenteral nutrition bag daily) are seldom used in our patient ~pulation. There are restrictive guidelines for these infusions. Lipid restricts the mineral and electrolyte content of TPN as well as the stability of the solutions (7-10 days). In the total parenteral nutrition (TPN) bag, electrolytes and other mineral levels are added according to the individual needs and medical status of the patient. For example, a decreased amount of sodium is given to patients with a tendency to heart failure, whereas patients with kidney dysfunction are given limited amounts of potassium, phosphorus, and magnesium. Once the composition of the formula is determined by the physician, the patient receives the infusion while in the hospital. Appropriate evaluation of the infusion is conducted daily based upon clinical observation and blood tests. Using sterile t~hniqu~~ the patient and family member are taught to inject additives into the TPN formula. A multivitamin solution is added daily, and vitamin K is added once weekly. Other additives injected just before infusion can include insulin, iron, cimetidine, or rantidine as presctibed by the physician. The formula is refrigerated upon delivery and removed from the refrigerator 2-3 hr before infusion to enable it to warm to room temperature. Once again using sterile technique, the administration set is inserted into the TPN bag before the infusion can be started. Initially, the a~inis~tion OFthe HTPN formula usually takes place over a 12-hr period at night. All patients observe a tapering on and off process of one hour using one-half the rate.

The HTPN formula is individually tailored to meet ea& patient’s needs, depending on the

This allows the body to make adjustments for the glucose load and to avoid symptoms 06 hyper/hypoglycemia. Some patients have a tendency to develop hypoglycemia and may need a

Vol. 5 No. 5 October1990

Nutritional Supportat Home

longer period of tapering. These patients expand the tapering off process to 1‘/nhr, with adjustment in rate every ‘/a hr. After patients have been on HTPN for sometime, the tapering on process may not be needed. However, the tapering ofi process is absolutely necessary throughout the course of treatment. Although TPN can be infused by gravity drip, home administration is simplified with use of a pump at night. All participants are taught pump management and troubleshooting of the equipment. The pump alarm sounds if there is a line occlusion, air in the line, a low battery, or completed infusion. Use of the pump can allay concerns about problems that may develop while sleeping. A pump with an automatic tapering mode is an additional convenience for the patient, since the patient does not have to remain awake to adjust the infusion after the first l-our and wake up early to turn down the pump rate for the last hour. Patients are also taught how to infuse TPN via gravity in case of a faulty pump or power outage. Some patients rely on gravity drip when traveling or when camping in a primitive area. Our patients allso employ gravity drip to infuse the lipid solution; this eliminates the need for an additional pump during the infusion. With children, depending upon age and weight, lipid is administered with microdrip tubing to avoid rapid infusion. Patients who use pumps are encouraged to inform the local power company of the existence of durable medical equipment in order to obtain priority restoration of power in case of an emergency situation. Recently, the advent of the portable pump and accompanying pouch for formula (used as knapsack, shoulder, or tote bag), allows infusion of TPN while traveling. Such pumps have made the IV pole obsolete.

ProblemSolving All patients/family members in training are given a set of written instructions and guidelines describing signs and symptoms of possible problems and procedures to follow at home. Guidelines cover hyperjhypoglycemia, various electrolyte imbalances, fluid imbalance (dehydration/edema), and infection. Patients are informed that hyperglycemia can be an early indicator of sepsis. Emergency situations and

303

problem solving are discussed and reviewed throughout the entire training period. Patients are instructed to note any abnormalities or changes in their daily routine. These are brought to the attention of the physician by telephone or during their clinic visit. Most of the time, questions and problems can be handled by telephone. If blood chemistries must be evaluated between clinic visits, this can be arranged via a local lab or home provider, and results can be relayed to the nutrition team for evaluation and possible formula change, Sepsis is a major problem, and immediate notification of the primary physician when fever occurs is emphasized. Even if patients believe that they have only a minor infection, they must inform their primary physician. Although patients with indwelling devices are not necessarily prone to sepsis, provided they maintain strrile technique, infection from another source can lead to major line sepsis. An awareness of the home situation can help the health professional have an accurate picture of family/social interaction and aid in the telephone evaluation of situations such as new onset of fever. Yrtcases of recurrent sepsis, patients and family members are carefully assessed to assure that sterile technique has continued. all patients should receive prophy!actic antibiotic coverzge for invasive dental work to avoid a possible source of sepsis. Appropriate intravenous antibiotic coverage is prescribed by the primary physician.

Diwhurge Planning At the time of discharge from the hospital, patients receiving HTPN and their family members have complete written instructions, a copy of the formula, orders, and a supply list for home reference. Patients are sent home with the first bag of HTPN premixed with all the additives from the hospital pharmacy. The patient only needs to insert rhe administration set. Supplies and pump are delivered to the home before the patient’s discharge to allow family members time to organize things at their convenience. A patient’s home needs are assessed by the patient or family members, the primarycare nurse, and the nutrition support nurse in coop e&on with a social worker. Arrangements are

ma& pricsrto discharge for any support or integye&on that may be needed at home. At the dme of discharge, the patient and family members should be completely versed in all aspects of HTPN and feel comfo~ble going home. Following discharge, the patient and family are responsible for an inventory of supplies at home and for reorderingwhat is needed from the hospital or the provider.

At times, there is a reluctance on the part of the patient or family member to accept the need for HTPN. This is es~~i~ly true if the patient has had an acute illness, for example, mesenteric infa~tion resulting in a major bowel resection and short bowel synd~me (S patients, it is difficult to accept the abrupt change in their health status and their dependeney on HTPN. However, moti patients adjust well over time and come to accept HTPN as part of their daily living. Patients also learn qu~kly how much and what kind of food thev can eat and tolerate. Counseling with a knowledgeable dietitian can be of invaluably assistance to these patients. A dietitian can make helpful suggestions about an appropriate dii:t for an individual’s situation; info~ation about dining out or handling eating in a sociafsituation can be very useful. Meal~e in a family setting is as much for ~~2~ti~ as f+x nou~shment, If the individual is unable:to eat or is restricted in inr;lke, din@ patterns should not change, Other family members sbould not feel guilty about eating normally. Emphasis should be placed on conversation and togetherness, instead of food. Some patients suffer from chronic pain and disCott&%. Obtaining pain relief may be a problem because of the patient’s inability to absorb adequate motion. Patients with longterm pain problems require referral to an expert in pain management. The issue of sexuality and body image is of prime Concern to patients. Having an external device and tequiring a machine every night may cause problems in adjustment. Patients shot&l be ensured to discuss feelings with their partnets and be given the cpportunity for professional help if needed. J3TPN infusion

can be flexible in planning activities. The time of the infusion can be adjusted to the patient’s lifestyle. Intestinal function in same patients may be sufficient to allow absorption of fluids and nut~ents so that the TPN can be skipped a night or two during the week, allowing more freedom. As part of a normal lifestyle, vacation and traveling is encouraged. A simple overnight trip or long weekend may lead to a month’s vacatlon across the county, or even abroad. Arrangements can be simple or complex depending upon the destination and the length of stay. A~ngements must be made in advance with the provider for the dellvery of formula, sup plies, and equipment as needed. Patients are given a letter from their primary physician detailing the medical history and cur~nt status, HTPN formula and other medications, and telephone numbers for emergency contact with local provider and medical personnel. With travel abroad, it is easier for the individual to take all that is needed at the time of deyanure and for clearance of customs upon arrival, With prior notification, most airlines are very accommodating for individuals with special needs. If an in~vidu~ is traveling to a remote area or outside the country, the patient should carry a repair kit for the catheter, which includes approprlate instructions and urokinase for declotting by a local physician. This avoids any unnecessary delay in ob~ning appropriate treatment in an emergency situation. Often the greatest help to HTPN patients and family members is the ability to discuss various concerns with others in similar circumstances. At Memorial Sloan-Kettering Cancer Center, an informal HTPN support group meets socially once a year under the guidance of the hospital psychiatrist and the nutrition support nurse. Informal networking and sharing of experienr?es and feelings are ~~0~~~ for mutual support. On a national level, in the United States, the Oley Foundation, though their organization of regional coordinators (HTPN consumers) and publication of the Ljfelinc Letler, provides additional support and a resource for information. Mem~~hip and subs~~pdon are free to all HTPN and HPEN consumers. A national conference arrd social get-together is held annually.

Vol. 5 No. 5 October 1990

Cluwsing a

.Nutdkmal Support at Home

Care Prwider

When patients were first sent home on HTPN in 1969, no provider was available and patients or family members were taught to mix the HTPN solution using sterile technique. Because of financial considerations, some of our patients continue to get their own supplies and mix their own solutions. Most of our patients, however, use a provider for the compounding of formula and the provision of supplies. This is far more ccnvenient, and in some cases, this has improved compliance with sterile technique. Patients who suffer from Crohn’s arthritis or other debilitating illnesses with declining manual dexterity benefit from the service. At present, new patients are given a list of providers who have the capabilities of worldwide service. If patients have a previous association with a provider, it is honored. Considerations for selecting a provideI, include (a) commitment to patient service and needs, (b) dependability, and (c) quality control. It is imperative that a provider be patient oriented and able to support these patients long term. Servicing patients who wish to vacation away from home is an integral part of a provider program that enables patients to lead as normal a life as possible. Xosc important however, is the accuracy and dependability in providing HTPN prescriptions and supplies. With our

HTPN program, the company provides the formula, equipment, and trained personnel for occasional blood drawing. A nurse from the provider visits on the day of discharge to assess the home situation and make sure that all equipment and supplies are present and in proper working order. Follow-up visits are usually not needed, since patients and family members are completely trained before leaving the hospital. Medical management, as well as all aspects of training and follow-up, is retained by the nutrition service in conjunction with the patient’s primary physician (if other than the nutrition service).

At the time of discharge, the home provider requires the patient to assign benefits for appropriate billing and sign a certificate of training in HTPN. To ascertain quality assurance, the nutrition service has developed its own

305

training form which documents all aspects of HTPN instruction and is signed by those involved in the training, including patient and family member, nutrition support nurse, and physician. This is kept in the patient’s file, and if retraining is indicated, documentation is written on this form.

With adequate preparation and commitment by all iuvoived in .P liome enteral or parenteral program, patients can meet their nutritional needs. These programs enable patients to return home and maintain nutritional 3tatus with an improved quality of life. It. is most rewarding to see an individual leading an active life taking part in what most of us take for granted.

The authors gratefully express their appreciation to hloshe Shike, MD, for reviewing the manuscript. Tgle first author was supported by a grant from Caremark Inc., affiliate of Baxter Healthcare Corporation.

eferences 1.Shike M, Il.-ennan M. In: Devita VT, Hellman S, Rosenberg S, eds. Cancer principles and practice of oncology, 3rd cd. Philadelphia: JB Lippincott, 1989:2029-2044 2. Bloch AS. Preparing the patient for home enteral management. In: Hermann-Zaidins M, TougerDecker R, eds. Nutrition support in home health. Rockvilk, MD: Aspen, 1989. 3. American Society for Parenteral and Enteral Nutrition, ASPEN standards for home nutrition sup port: heme patients. Nutr Clin Pratt 1988;3:202205. 4. Shike M, Berner Y, Gerdes H, Gerold F, Bloch A, Sessions R, Strong E. Percutaneous endoscopk igastrostomy and jejunostomy for long-term feedmg in pat!ents with cancer of the head and neck. Gtole!yngol Head Neck Surg 1989; 10 1:549. 5. Shike M, Schroy P, Richie MA, Lightdale GJ, Morse R. Percutaneous endoscopic jejunostomy in cancer patients with previous gastric resection. Gastrointest Endosc 1987;33:372. 6. Bloch AS, ,ShiOsME. Appendix, Tables 40-42. In:

Shils ME, Young V, cds. Modern nutrition in health and distiase. Philadelphia: Lea and Febiger, 1988. ‘7. Bloch AS, Bar&Morse R. Home cart training and management options. In: Bloch A, ed. Nutrition

of the cancer patient. Rockville, RR&AspenPubI, 1990. 8. PEN Advisory, Columbia, SC. BIue Cx&Blue

management

Shield &South Carolina,August l987;2(?% 9. I)llveyJA, Hall NH. Current practicesfor home enteral nut&&. J Am Diet ASSOC ~98~$~2~~-~40. 10. !$bikeM, WallachC, Cerdes H, Hermann-G%ins slrin_level gastrostomies and jejunostomies for long-term enteral feeding. J Parent Em Nutr

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Your Personal Guide to Home Tube Feeding, hy Norwich Eaton l The Patienf’s Guide to Tube Feeding at Home, by Sandoz Nutrition l Topics in Enteral Nutrition for Long Term Care by Sandoz Nutrition l ~ng-Te~ Tube Feeding by Sandoz Nutrition l The prevention and Management of Tube Feeding Complications, Study Guide by Sandoz Nut~tion l PEGIPEJWhat are They? by Ross Laboratories l Mastering the Technique of Tube Feeding at Home by naso~st~, nas~u~enal, or nasojejunal tube, by Ross Labratories l Home Tube Feeding Instruction Kit, by Ross Laboratories l

The Oley Foundation, 214 Hun Memorial, A-23, Albany Medical Center, Albany, New York 12208 l

Lasou

the cancer patient: a emotive effort by nurskg and dietetics to overcome problems. Cancer Nurs 1984;7:469-474. MargieJD, Bloch AS. Nutrition and the cancer patient. Radnor: Chilton, i983, Randall HT. Entelal nu~~n: tube feeding in acute and chronic i&x+. J Parent Ent Nutr 1984&l 13. Rdey TO, Copeland EM. Value of nutritional

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