Home parenteral nutrition for the short bowel syndrome

Home Parenteral Nutrition for the Short Bowel Syndrome Psychological Issues A. Dale Gulledge, M.D. Head, Liaison Psychiatry,

Department

of Psychiufy

W. Terry Gipson, M.D. Stuffi Liaison Psychiatry,

Department

of Psychiatry

Ezra Steiger, M.D. Stuff, Depurfment

of General,

Colon and Recful Surgery

Ruth Hooley, R.D. Department

of Nu tritionul Services

Faith Srp, R.N. Home Hyperulimenfution

Nurse

Cleveland Clinic Foundation,

Cleveland

Ohio

Abstract: Home parenteral nutrition (HPNJ for the short bowel syndrome represents a treatment modality that raises issues about prolonged machine dependency for living. Psychological reactions are described for patients with inflammatory bowel disorders and anatomical loss of small bowel. Liaison psychiatry involvement with 50 patients in the HPN program has identified such problems as grief reactions, depression, organic brain syndromes, drug dependency, and body image changes as they influence the initial adjustment to the in-hospital phase of HPN learning for patient and family. The importance offamily and mental status examination are emphasized in the evaluation of the patient before and during the institution of an HPN program. Outlinedare psychological parameters that need to be considered when assessing what factors might impede or enhance the acquisition and use of HPN information.

Short bowel syndrome (SBS) may occur when the normal gut is impaired either anatomically or functionally. Persons with SBS lose the ability and opportunity to eat and drink normally; without their small bowel they may become rapidly malnourished, suffer multiple psychological and soGenml Hospital Psychinfy 2, 271-281, 1960 0 Elsevier North Holland, Inc., 1980

matic dysfunctions, and eventually die. Frequent anatomical reasons for the syndrome are mesenteric thrombosis, mesenteric embolization, small bowel volvulus, multiple bowel resections (Crohn’s disease), and strangulated hernias; functional causes for SBS are often inflammatory bowel disease (Crohn’s disease), irradiation enteritis (for testicular or gynecological cancer), scleroderma, and multiple enteric fistulae causing blind loop problems (l-7). The nutritional consequences of loss of more than 80% of small bowel are usually profound-the effects being worse if the ileocecal valve and colon are removed before or in conjunction with the small bowel resection, with survival being rare when there are fewer than 2 feet of jejunum or ileum (8). After massive bowel resection common sequelae are steatorrhea, acid diarrhea, increased gastric secretion, blind loop syndromes, increased gastric emptying, anal excoriations, and decreased gut transit time. Dudrick (9) in 1968 first introduced the principle of intravenous (IV) therapy for home use, with 271 ISSN 0163-8343/801040271-111$02.25

A. D. Gulledge et al.

Scribner (10) in 1970 subsequently developing additional concepts for a substitute form of nutrition-“the artificial gut/‘--or total parenteral nutrition (TPN); this over recent years has introduced opportunities for patients not only to survive but to live outside a hospital environment and at home. TPN is a technique for feeding essential nutrients directly into the blood stream. An inert large-bore Dacron cuffed silastic catheter is surgically threaded into a large central vein (See Figure 1) after determining vein patency using preoperative venograms. Sterile nutrient solutions are then prepared delivering essential amino acids, electrolytes, trace elements, lipids, and carbohydrates after careful determination of the patient’s nutritional status and needs. Heparin is instilled daily through a heparin lock to keep the silastic catheter patent, with the infusion volume and rate delivered by an electric pump mounted on a portable IV pole. Care of the catheter involves a daily aseptic process to reduce catheter sepsis. Although attention has focused on home parenteral nutrition (HPN) problems, such as nutritional complications, sepsis, hepatic function, types of catheters and their care, pump problems, filter types and packaging supplements, very little emphasis has been placed on the multiple and common psychological issues in beginning or maintaining a daily life on HPN.

Figure 1. Silastic catheter placed in right atrium, exiting from left chest.

272

Literature Review Jeejeebhoy’s early case report of a patient 23 months on HPN (11) did not describe any psychological problems; in a later study of 12 patients (12) (seven with anatomical SBS, four with functional SBS, and one with pseudoobstructive SBS), two were described as depressed (both with superior mesenteric artery thrombosis): one with “cyclic polydypsia when unhappy,“ both with “previous depressions. ” Jeejeebhoy initially concluded that psychological difficulties or depression were not common problems and that “adaptation” to eating restrictions was a “voluntary curtailment.” Riella and Scribner’s five-year review of their experiences with HPN in 43 patients (13) made no mention of psychological, social, or adaptive issues. Dudrick (9) commented that the “hyperalimentation nurse provides the therapeutic beneficial psychological support” but did not elaborate on psychological issues. Tsallas indicated the financial costs of HPN were four times less than hospital care for home parenferal patients (14) but made no mention about the psychological benefits of being in or out of the hospital while on HPN. Ivey et al. (15) emphasized the importance of pharmacy’s involvement in patients’ learning of HPN, as well as “general coordination between patient and hospital,” but gave few details about psychological reactions to problem. In Fleming’s extensive subject review of 93 HPN references (16), no psychological issues were mentioned. MacRitchie’s paper, “Life Without Eating or Drinking, Total Parenteral Nutrition Outside the Hospital” (17), was one of the first efforts to deal with the psychological-adaptive issues of HPN. All nine patients in his study manifested an initial phase that followed extensive surgery for gangrenous bowel, each suffering from an initial reaction of disbelief, hopelessness, and grief over the loss of their usual bowel, eating, and drinking functions. Fear of early death was a repeated issue and required attention from staff for psychological support. The author noted an intermediate phase beginning with the learning of HPN, a period of overdependence influenced in degree and duration by such issues as infections, metabolic disturbance, mastering HPN teachings, and home environment “receptivity.” Such common problems in long term adaptation at home as inability to eat or drink freely with family members at meal time, consequent spouse guilt and the role of TV in stimulating food interests were noted, as well as sleep disturbances,

HPN for Short Bowel Syndrome

libido reduction, and hunger changes. Three patients with a history of Crohn’s disease were relieved to lose their “bad and diseased gut” surgically and manifested no grief reactions as did the “acute intra-abdominal catastrophic” patients. MacRitchie discussed machine dependency issues, as well as the restrictions that HPN lines and machines placed on sexual activity, traveling, or going out to eat. Coping attempts by family members were noted to produce behavior such as a spouse’s overprotectiveness or rejection or children’s shame over having a sick parent on HPN. Medical complications such as “kinking of the line, aseptic technique problems,” poor compliance, were found to be often preceded by a significant depression. Organic brain syndromes, though not discussed in detail, were mentioned as a problem secondary to fluid, electrolyte, or nutritional imbalances. Malcolm (18) indicated that approximately 20% of the acutely ill patients receiving TPN in the hospital had delirium; a smaller number had brief affective disorders with apathy, slowed mentation, insomnia, and saddened mood, which cleared with TPN use within 48 hours. He briefly discussed psychological problems of maintenance hemodialysis compared to HPN care, suggesting that machine treatment contributed to psychosocial problems, marital discord, anger, and rejections. Price and Levine, in their study of 19 consecutive permanent HPN patients (19), described “reactive depression” in all patients and also mentioned problems in the areas of body image, anxiety, sleep, work, and marital and family relationships. It is interesting that their patients with chronic bowel disease were reported to cope more effectively in the initial phase of HPN (37% of their series having Crohn’s disease), at least while in the hospital and for six months following discharge.

The HPN Program Because the potential for multiple psychological problems in patients with SBS on HPN is recognized (20,21), liaison psychiatry staff now routinely evaluates and follows all home parenteral nutrition patients in our HPN program. This paper reviews the initial evaluation process and psychological issues for 50 patients with SBS through the inhospital phase of the HPN program. Each patient with SBS had a complete nutritional assessment that established nutritional baselines for home parenteral nutrition. This consisted of

anthropometric measurements, nutritional history, laboratory tests, and clinical information (see Appendix). Each patient’s medical-surgical record was entirely reviewed, followed by a series of openended interviews to determine the patient’s background. A detailed mental status evaluation was done, assessing orientation, memory functions, ability to comprehend information, basic knowledge, judgment abilities, attention span, ability to assess reality, presence or absence of significant affectual problems (such as anxiety or depression), pain problems, eye-hand coordination ability, degree of deconditioning, and the influence of drugs on thinking, affect, or behavior. Additional psychosocial information regarding family, patient, and finances was gathered from the social worker, hyperalimentation nurses, primary physician, and nutritionist. Depending on the patient’s clinical status, additional studies were ordered, i.e., EEG, organic psychometrics, CAT scan. The HPN team then collected, synthesized, capsulized, and discussed this information, planned initial steps for the patient’s HPN program, and followed the patient on a daily basis. This “initial period” usually ranged from 4 to 6 weeks, depending on the multiple medical and surgical problems such as septicemia, intra-abdominal abscess, fistulae, acute organic brain syndromes, drug withdrawal, or recurrent surgery. The basic HPN educational approach was followed as outlined in the Cleveland Clinic Home TPN Manual (22).

Findings The largest number of patients had short bowel problems from Crohn’s disease, irradiation enteritis, or superior mesenteric problems (see Table 1); 31 were women. Crohn’s disease patients were younger than patients with irradiation enteritis, superior mesenteric, or multiple fistulae problems (see Table 2); women again constituted the majority. Overt silastic catheter problems noted (excludTable 1. Patients

on home parenteral

nutrition

Diagnosis

Number

Crohn’s disease Irradiation enteritis Superior mesenteric problems Multiple enteric fistulae v01vu1us Total

18 9 6 3 13 50

273

A. D. Gulledge et al.

Table 2. Average age per diagnosis Average Age (years) Diagnosis Total number Female Crohn’s disease Irradiation enteritis Superior mesenteric problems Multiple enteric fistulae

Male Female

Male

Table 4. Drug problems related to catheter problems 416 patients with Crohn’s disease 313 patients with irradiation enteritis 113 patients with Crohn’s disease

12

6

36

39

9

7

2

53

55

Table 5. Depression related to catheter problems

6

2

4

55

57

313 patients with irradiation enteritis 2/6 female patients and 113 male patients with Crohn’s disease

3

1

2

49

62

ing it out,” or “falling out.” Seventy-one percent of catheter problems occurred in females either with Crohn’s disease or irradiation enteritis (see Table 3). Drug problems associated with catheter complications occurred more often in female patients with Crohn’s disease (Table 4). Catheter complications in conjunction with depression occurred more frequently in female patients with irradiation enteritis. (see Table 5). Organic brain syndromes (Table 6) of the acute variety were observed in 38% of the patients, with 4% having definitive evidence for a type of dementia problem. Home parenteral nutrition for those patients reassessed demonstrated normal protein+alorie status in accordance with Hooley’s and Steiger’s studies (Table 7) (23).

Organic Brain Syndromes Acute organic brain syndromes (AOBS) were common problems in our patient population, several reaching psychotic proportions. Causes were multiple, and ordinary etiologies were sepsis, hypovolemia, hypervolemia, a variety of drugs (analgesics, steroids, antianxiety, hypnotics, and even antipsychotic medications), electrolyte imbal-

Table 6. Organic brain syndromes Acute organic brain syndromes: 38% (19150) Chronic organic brain syndromes: 4% (2150) Causes for acute organic brain syndromes Drug 52% (10/19) Metabolic 26% (5119) Sepsis 21% (4119)

Table 7. HPN and protein-calorie normalcya Number of patients: 14 (8 female/6 male) Age range: 21-63 years I mean 47 years Months followed: 1.5-42.5 months I mean 14.1 months Pre-HPN weight mean: 126 lb (? 34) Post-HPN weight mean: 135 lb (? 34) 1 NS Prealbumin: 3.5 g% Postalbumin: 3.9 g% Delayed hypersensitivity: 2 or more positive tests in 12114 patients; 1 positive in 2 of 14 patients (both in steroid treatment) Mean arm muscle circumference: 93% of reference standard (* 64%) Mean triceps skin fold: 100% of references standard (+ 12%) Mean creatinine height index: 0.80 (kO.30) (normal = - 0.75) Serum transferrin mean: 304 + 110 mgldl (normal 189364 mgldl) aData as per Hooley and Steiger (28).

Table 3. Catheter problems, excluding sepsis

274

Male patients

18

ing catheter sepsis, which can also be secondary to psychological problems) were “accidently” cutting the catheter, failure to heparinize, accidently “pull-

71% 60% 30% 75%

Female patients >

females (10114) of female catheter problems (6110)/ Crohn’s disease / average age: 29.9 years of female catheter problems (3110) I irradiation enteritis I average age: 51 years of male catheter problems (314) / Crohn’s disease I average age: 45 years

HPN for Short Bowel Syndrome

ante, cerebral infarcts, and chemical withdrawal. Regardless of the cause, adequate attention span, ability to remember new and recent information, affectual stability, and ability to comprehend were necessary and basic clinical prerequisites for the HPN self-care program. The development of AOBS sometimes delayed the program and usually produced the need to return and to relearn earlier stages of care and education until the confusion cleared. Occasionally, cognitive dysfunction with its concomitant attendant anxiety was labeled by staff as “reactive anxiety,” or “behavior problems.” Helping the staff develop an awareness of the cognitive disruption usually prevented them from placing patients in a frustrating position in which they could not meet others’ demands; this reduced staff expectations, allowing patients to return to a more dependent role until the AOBS cleared. Mild chronic OBS was more frequent in those patients who had anatomical SBS with a history of embolic phenomena not only to their gut, but also to their brain, either in the distant or near past. In such cases, prior assessment of left-right-hand dominance and function and visual function enabled catheter placement consistent with the patients’ physical capabilities. If hyperalimentation nurses and pharmacy staff were alerted to cognitive-coordination issues, HPN training could be planned individually so patients could proceed at their own pace and not be thrust into situations that exceeded abilities. Acute and chronic OBS occurs frequently enough in HPN that careful mental status exam before and during the HPN educative process is essential in any phase of the training efforts (24).

Body Image The nature of emotional, perceptual, and psychosocial reactions determines whether body image adaptation is normal or abnormal (25,26). Anxiety can be aroused when body function or structure is altered by metabolic changes or surgical procedures, with a concomitant alteration in body image. The mental abstraction designated as body image allows one to organize perceptions of how the body is viewed physically, aesthetically, and socially-by oneself and by others. The HPN patient with catheter placement experiences another change in body image, beyond that caused by the ostomy, creating some fear of rejection by loved ones. We found it important for patients to have an opportunity to discuss alterations in their body’s appearance

and/or function. We frequently heard such descriptions as “crippled,” “unattractive,” “without sex either as self-appraisal appeal,” and “distorted,” comments or projections of the view of loved ones. We found it helpful to consider the patients’ thoughts and feelings about their catheter and its placement, from the beginning of the program. Some patients referred to the catheter as their “tail,” attempting to make humorous something they despised or disliked. To give patients an early sense they have some control over their HPN (if there is a choice as determined by preoperative venograms) the catheter can be placed to exit at a patient-selected site on the chest. How the catheter might allow the normal use of a brassiere or a low cut blouse were not insignificant catheter issues for female patients. Sufficient hand strength and dexterity were necessary in learning to handle syringes, dressing, catheters, clamps, scissors, or vials. If hand weakness was a problem, physical therapy or occupational therapy usually was instituted before and during HPN education to enhance the chances of independent HPN care. When an ostomy was already present, there was often concern about whether aseptic catheter care could be achieved-especially for those patients with premorbid obsessions about cleanliness. Hypnotic and analgesic use for 3 of 4 nights following catheter placement prevented discomfort and allowed sleep, reassuring the patient from the inception of catheter use that it was something that could be managed. Mrs. M., a 62-year-old woman, presented as profoundly weak and malnourished after several months of hospitalization for multiple medical complications from her irradiation enteritis following treatment for carcinoma of the cervix. Her ileostomy was placed in such a fashion that she had given up her usual sleeping on her left side so her “pouch would not burst.” Her catheter was to be placed and exited on the right side of her chest. She was anxious and concerned since now she could not sleep on her right side and she could “never” sleep on her back. She verbalized her worries about being even more tired and irritable from loss of sleep and more pain. When we assured her this was a normal reaction and that we would use some hypnotic and mild analgesic for a short period so she could rest comfortably, but without risks of producing drug dependency, she relaxed. After 4 nights of sleep the analgesic and hypnotics were stopped and she was pleased to find indeed she could sleep on her back.

The point is that patients have their own individual agendas about their bodies that cause them to feel anxious 275

A. D. Gulledge et al.

about the catheter, its placement, and subsequent function . Informing patients and family members about catheter functions and care can help decrease such initial anxiety about HPN. Discussion at this phase of HPN training can allow feelings of early mastery and decrease patients’ fears that this “new part” of their body will fall outside their control. If there are no cognitive problems or other major causes for anxiety, most patients can usually assume aseptic care and heparinization of their catheter within 1 week. If the cause for SBS was a sudden loss of bowel (i.e., superior mesenteric thrombosis) with its attendant changes in eating or drinking, then grief work is required. Our patients with Crohn’s disease, like those in Baker’s study (27) with multiple surgeries, pain, and frequent hospitalizations, frequently looked to HPN as hope for “new freedom” and a more normal daily life. Thus initial approaches to a patient with SBS needing HPN need to focus on anxieties about catheter care and function and reactions to loss of bowel and its attendant grief-especially for patients with unanticipated sudden massive loss of bowel.

Depression Approximately 22 % of our patients had significant depressive symptoms and signs. Grief reactions were not included if self-esteem remained intact or if criteria for a major affectual disorder, as initially outlined in DSM III (28) were absent. Virtually all the depressed patients were in the inflammatory bowel category. Especially prone to major depressive problems were those patients who had been treated with extensive irradiation therapy for pelvis malignancies with subsequent problems with enteric fistulae, abdominal wall breakdown, vesicleenteric fistulas, or recurrent intraabdominal abscesses. These patients had no evidence for recurrent malignancy, but then required multiple hospitalizations because of recurrent abdominal pain, multiple surgeries, or multiple infections that impaired their role functions and expectations as workers, spouses or parents. Loss of autonomy, enforced dependency, depletion of finances, the complications of malnutrition, chronic pain, recurrent sepsis, and multiple AOBS for a variety of metabolic or treatment causes were common recurrent themes that preceded HPN in these patients. Helplessness and hopelessness were common conditions for which analgesics, hypnotics, and minor tranquilizers had been frequently prescribed before HPN use. These 276

patients needed intense supportive psychotherapy, and often tricyclic drug therapy. Pseudodementia was an issue with one patient, a very sick man with multiple problems of hepatic dysfunction, electrolyte imbalance, sepsis, anemia, and repeated bouts of congestive heart failure. Initial mental status evaluation indicated AOBS, but as it cleared a question of chronic OBS was raised. The chronology of the suspected dementia’s course was relatively short; he had pervasive affectual changes, communicated a strong sense of distress, and highlighted these failures with his learning of HPN. Poor effort, frequent somatic symptoms, persistent cognitive complaints, and “don’t know“ replies with social regression were apparent. He had “patchy” losses of memory, performance variability, and incongruence between his observed performance and findings of cognitive dysfunction. When he was treated for his depression with low doses of doxepin and individual and milieu therapy, the “dementia” cleared. His depression prolonged the usual teaching time (usually 3 to 4 weeks), emphasizing that the earlier teaching contacts should have been simplified, with greater emphasis on repetition and staff patience. Patients with Crohn’s disease were the other major group with depressive problems. Most had lengthy histories of illness, often beginning in their teenage years or early adult life. Histories were replete with problems with parents, peers, health care professionals, work, or spouse. Sustained periods of healthy living were rare, and illness, drugs, hospitals, surgeries, and pain were a way of life. All had difficulties coping with their ostomies, with concern about such things as “noise of their bowels, ” “smells,” “spillage, ” or “sexual unattractiveness” to their spouses. As a group, they often sought “the needle” for their medication, had difficulty in accepting food and fluid restrictions, conveyed intense feelings of anger to others, and tended to blame others for their physical or emotional problems. Decreased attention span, social withdrawal, poor compliance, inadequate sleep, and inappropriate expectations of others existed as problems before catheter placement and, in contrast to Price and Levine’s findings (19), often continued during subsequent HPN treatment. Tricyclics, when used for depression, required careful titration to avoid more xerostomia, orthostatism (a problem for some because of severe deconditioning from spending months in bed), induction of lethargy, or mild central anticholinergic syndromes. It was necessary to use a liquid form of the drug most of the time because of poor gut absorption

and

rapid

transit

times,

while

attempting

to

HPN for Short Bowel Syndrome

avoid parenteral routes, since injection sites from years of many injections produced poor intramuscular absorption and unpredictable pharmacological effects. Often sleep improvement and diminution of anxiety were early antidepressant medication effects, improving patience, increasing hope, and aiding in receptivity to the HPN effort. With clearing of depression, ambulation improved; when combined with efforts toward self-care as stressed and reinforced by the HPN team, this again conveyed to the patient that hope and control over the disease was possible. Drug-drug interactions and drug side effects were monitored carefully to be sure that they did not produce further somatic problems to fuel a depression. The presence ofdepression before the initiation or early in the course of HPN education frequently required therapeutic intervention, if sick patients were to assume more self-reliance in their daily lives after months of being bed bound. Drug Problems Problems with narcotics were frequent, especially if the patient was having catheter problems. Although “pain” was the patients’ most common explanation for requesting the needle, many times the underlying reason was to seek relief from depression, reduction of angry feelings toward health care staff, attenuation of anxiety symptoms, or enhancement of sleep simply to avoid unpleasant thoughts. Several times a patient’s demand for narcotics created intense conflicts with hospital staff. Anxiety signs on occasion heralded early drug withdrawal states that impaired patient concentration and cooperation. Standard drug withdrawal programs, maintaining good analgesic control for organic abdominal pain problems, and focusing on milieu issues were helpful in reducing anxiety and enhancing the teaching of HPN. Enhancing communications between staff and patients in staff meetings and supporting nursing needs for ventilation usually reduced system problems that often reinforced drug seeking by the patient. Whenever possible, drug addiction problems were treated before catheter insertion, since our experience indicates that the catheter provides a major temptation as an “access” route for narcotic abuse. Addiction problems produce much nursing staff discomfort, especially if the patient returns home on large doses of narcotics for organic pain problems. One young man addicted to Talwin (pentazocine hydrochloride) with Crohn’s disease, before our involvement, refused to have his Talwin addiction

treated; he often returned ataxic, dysarthric, with dehydration and sepsis from poor catheter care. His family gave multiple instances when he was “high,” and he had recurrent fluid and catheter problems. Another patient before her treatment for narcotic addiction cut her catheter while preparing for heparinization while high on her Demerol (meperidine hydrochloride), an act that could have caused her to bleed to death if her spouse had not been alert. Drug dependency

is a frequent issue that can complicate and impede any phase af the HPN training program, and needs ongoing careful evaluation and treatment. The HPN Apparatus Inability to eat normally and having to depend on a machine to keep alive was an ambivalent situation for most patients. Slowly each began to realize the necessary of “hooking up” in order to live and have adequate nutrition. Independent individuals often resented losing control over their body and its functions, as daily routines and social contacts must be planned realistically around catheter care, fluids, and machine functions. Although most solutions are given at night, concern about equipment functions, speed of delivering solutions, nocturia (osmolar effects), and machine noises were common. Many of the patients expressed their doubts about operating the machine because it looked “so complicated.” Questions of machine costs, extra parts, and maintenance needed to be answered (29). Although most patients were grateful to be alive, many had questions about how this would affect the quality of life. A legally competent elderiy lady with severe scleroderma of most of her gut had been on HPN because her family had urged her to try it. Independence and control were core traits in her personality, and she bitterly resented the machine and its real and symbolic limitations. Her family and staff became very upset when she began to verbalize her desire to discontinue her HPN of several months, She became profoundly depressed; when one of the authors first saw her in the KU she pleaded to have the HPN stopped because she felt so miserably ill most of the time because of profound pulmonary and joint problems. She later died of pulmonary complications but never did accept HPN because of its limitations--still feeling she never should have started HPN.

Relationships The strains of HPN were significant not only for the patient, but also family members. If the SBS repre-

A. D. Gulledge et al.

sented a sudden change (i.e., superior mesenteric thrombosis), considerable anxiety about the threat of death was usually an immediate issue facing family members, with the postsurgical ostomy generating multiple questions and concerns over the following days. Sexual matters were rarely verbalized by the spouse or patient and, even when brought up by staff, tended to be minimized as a major concern. Most of the time the patient had been so ill the year before HPN that sexual activity was essentially nil, because of such common problems as depression, draining abdominal abscesses, recurrent sepsis, repeated bouts of intestinal obstruction with progressive emaciation, and malnourishment. The declining physical attractiveness of the patient at times reached severe proportions for a spouse, describing the patient as virtually “nothing but bones” and “too sick.” Later, when better nourished and less ill, patients frequently verbalized worries about the catheter’s decreasing their physical attractiveness or the catheter being dislodged during sexual activity. Some began to plan their sexual activity before their nocturnal HPN infusions; others worried whether coitus should be during the infusion with the risks of getting “tangled up or kinking” the lines but allowing more spontaneous expression. The younger single people worried that HPN would prevent them from finding a mate or having a casual sexual relationship. For those who had been chronically ill, sickness often became an available excuse to avoid sexual activity. Some individuals developed anxiety as they appeared healthier to others because they anticipated an increase in their spouse’s sexual demands. This concern was usually allayed when the spouses and patients were brought together, issues discussed, and the patients reassured that “too much sex too soon” would not be “forced” on them. Chronic illness is well known to skew relationships, often realistically causing the patients to be more dependent on others. Since a central theme in our education was patients’ responsibility for the entire HPN procedure, many times the patients anticipated discharge from the hospital with fear and the inception of HPN with ambivalence. To obviate this source of anxiety we trained a responsible family member to troubleshoot emergency situations at home until resource staff could be contacted. Our experience has been that making the family member primarily responsible for HPN causes 278

more problems than benefit, i.e., resentment of the additional time HPN takes, additional reminders of the patient’s illness, and concomitant anger, anxiety, or guilt. Although “backup” persons voiced concerns, if the relationship to the patient was stable before HPN, most spouses with staff support (and knowing assistance would be available later even when at home) were pleased to aid the patient. Overprotectiveness was a frequent issue during the training process, because family members had grown accustomed to not expect much from the patient over the prior months because of serious illness problems. Early pushing for more patient activity and independence often placed the patient in an ambivalent position between the staff and spouse; reinforcing the patient’s positive actions and attitudes was coupled with additional support and education of the spouse. This often provided a forum for family members to ventilate long stored-up feelings of anger, anxiety, and depression as they struggled to find a more comfortable relationship with the patient. Even with considerable staff support, several spouses separated from the patients, who had long standing Crohn’s disease, after hospital discharge. In all cases the spouse had experienced fatigue after living with the sick person, as well as constant monumental financial worries, and had anticipated the patient’s improvement in health and increase in independence, as the time for escape. On each occasion this precipitated the patient’s regression and return to the hospital and sick role behavior, in an attempt to prevent a final separation or divorce. In retrospect, these spouses rarely visited the patient, because they were “too busy” caring for the children and working. Another issue during the inpatient phase was the meaning of food as it was intertwined with relationships (29). Some common themes emerged: Who prepared the food? Is meal time the primary time when the family works through the issues of the day? Is food a historical means to handle emotional problems (i.e., snacks)? Is dining out the major social activity with the spouse? How the patient reacts to a hospital roommate’s meals or how the spouse views food are important areas to explore early, so acceptable alternative for the patient might be developed. Reducing unnecessary anticipatory anxiety about eating patterns can enhance patients’ self-esteem and further reduce feelings of loss of control over their lives. Our experience was similar to Price’s and Levine’s, in that those couples with stable, empathic, happy rela-

HPN for Short Bowel Syndrome

tionships who gave a history of working through problems by mutual sharing of efforts adapted better to the stresses of the HPN program. When there was a history of stormy relationships-not uncommon in our patients with Crohn’s disease-we anticipated more time would be needed in helping the spouse, patient, or children adjust to HPN.

HPN clearly accentuates prior relationship problems. lf adaptation to HPN is to be maximized, attention to relationships “before HPN” is critical if comfortable adjustments are going to occur for patient and family.

Comment We found most health care providers involved with HPN somewhat limited in their understanding of psychological issues, because of a lack of time or knowledge of relevant issues. Obviously it is neither practical nor possible for every staff person to know in depth the patient’s basic personality traits or relevant family dynamics; yet, it is important to have an awareness of those issues which are significant, common and normal when dealing with the SBS necessitating HPN and long time machine dependency. Patient assessment for home parenteral nutrition would seem to require a review of the following questions: 1. What is the patient’s

ability to assess reality? of the role of “illness behavior” for the patient? Is there a significant history for state or trait anxiety which interferes with acquisition of information? Have there been past depressive episodes that have impeded learning, coping, or adapting? Has there been a history of excessive autonomy or independence with past medical problems that have prevented the patient to appropriately regress to a state of dependency, without its causing feelings of excessive guilt or being burdensome to others? Is there evidence for or history of significant cognitive impairment, i.e., vascular accidents or chronic metabolic encephalopathies? Is there a history of use of analgesics for “psychogenic pain” that has caused drug dependency or drug addiction problems? Is there adequate eye-hand coordination? Is there history of or evidence for excessive emotional lability?

2. What is the significance 3.

4. 5.

6.

7. 8. 9.

10. Is there severe deconditioning, secondary to prolonged illness, and malnutrition that impair stamina for standing or sitting while learning HPN? Our observations suggest that the younger patient with a history of Crohn’s disease is at a higher risk for sick role behavior, catheter complications, and drug dependency problems, whereas older patients with irradiation enteritis following treatment for pelvis malignancies are at a higher risk for significant depressive problems. Both are at risk for delirium, body image concerns, and grief reaction-common clinical problems. From our observations it is very clear that the patient’s family is affected by HPN-and sometimes even more than the patient. Therefore, in any psychosocial assessment it becomes important to evaluate the family before one imposes the heavy responsibility of home hyperalimentation. Family issues that seem to require attention are the following: 1. History of significant and chronic marital or family discord, before HPN, such as sick role behavior and attitudes in a Crohn’s disease patient 2. Children and other family members separated geographically from the patient, disallowing adequate support of the patient during the hospital phase (or after discharge) while learning HPN care and treatment 3. Family pressures to coerce the patient into home hyperalimentation so family members do not have to deal with the strains of prolonged patient dependency associated with chronic illness 4. A spouse who has been excessively dependent or independent and seems not to have the psychological flexibility to assume the needed backup role for the patient. If there is one consistent, clear recurrent theme associated with beginning HPN, it is the need to also work with the family. Early in the planning, the patient should be informed that members of the management team will also be routinely talking with family members to inform them about and help them with the common issues involved in HPN. Establishing solid rapport with family, patients, and staff allows treatment issues to be “routinely” discussed, better prepares patients to proceed at their own cognitive, emotional, and physical pace, and reduces iatrogenic risks and unnecessary staff discomfort in the initial stage of HPN. 279

A. D. Gulledge

et al.

References 1. Steiger E: Home hyperalimentation in the treatment of short bowel syndrome. Presented at the McGaw Home TPN Team Concept Seminar December 1979 2. Grischkan D, Steiger E, Fazio V: Maintenance of home hyperalimentation in patients with highoutput jejunostomies. Arch Surg 114:838-841, 1979 3. Cortot A, Fleming R, Malagelada J: Improved nutrient absorption after cimetidine in short bowel syndrome with gastric hypersecretion. N Engl J Med 300:79-80, 1979 4. Murphy I’, King DR, Dubois A: Treatment of gastric hypersecretion with cimetidine in the short bowel syndrome. N Engl J Med 300:80-81, 1979 Weser E: The management of patients after small bowel resection. Gastroenterology 71:146-150, 1976 Anderson MC: Long term survival with six inches of small intestines. Br Med J 1:419422, 1965 Wretlind A: Complete intravenous nutrition. Nutr Metab 14 (supp1)1:57, 1972 Jagelman DG: Short bowel syndrome. Presented at the McGaw Home TPN Team Concept Seminar December 1979 9. Dudrick SJ, et al: Parenteral nutrition techniques in cancer patients. Cancer Res 37:2440-2450, 1977 10. Scribner BH, Cole JJ, Christopher TG et al: Long term total parenteral nutrition: The concept of an artificial gut. JAMA 212:457, 1970 11. Jeejeebhoy KN, et al: Total parenteral nutrition at home for 23 months without complication, and with good rehabilitation. Gastroenterology 65:811-820, 1973 N et al: Total parenteral nutrition at 12. Khursheed home: Studies in patients surviving four months to five years. Gastroenterology 71:943-953, 1976 13. Riella MC, Scribner BH: Five years’ experience with a right atria1 catheter for prolonged parenteral nutrition at home. Surg Gyn Ob 143:205-208, 1976 14. Tsallas G, Baun DC: Home care total parenteral alimentation. Am J Hosp Pharm 28:840-846,1972 15. Ivey M, Riella MC, Mueller W, Scribner BH: Long term parenteral nutrition in the home. Am J Hosp Pharm 32:1032-1036, 1975 16. Fleming CF, McGill DS, Hoffman HN, Nelson RA: Total parenteral nutrition. Mayo Clin Proc 51:187199, 1976 17. MacRitchie KJ: Life without eating or drinking. Can Psychiatr Assoc J 23:373-379, 1978

Appendix:

Nutritional

Direct reprint requests to:

A. Dale Gulledge, M.D. Department of Psychiatry Cleveland Clinic Foundation 9500 Euclid Ave. Cleveland, OH 44106

Assessment

Collected data are evaluated by comparing inal patient-derived data. I. ANTHROPOMETRIC

18. Malcolm R: The psychosocial aspects of total parenteral nutrition. Presented at Annual Meeting, Academy of Psychosomatic Medicine, 1979 19. Price BS, Levine EL: Permanent total parenteral nutrition: psychology and social responses of the early stages. J Parent Ent Nutri 3:48-52, 1979 20. Gulledge AD, Gipson WT: Short bowel syndrome and psychological issues for home parenteral nutrition. Presented at the McGaw Home TPN Team Concept Seminar, December 1979 21. Scribner BH, Cole JJ: Evolution of the technique of home parenteral nutrition. J Paren Ent Nutrit 3:58-61, 1979 22. Sattler L, Wateska LP, Washko S, Myers KD, McKeown L, Steiger E: Cleveland Clinic Foundation Home TPN Manual. McGaw Laboratories, 1978 23. Hooley R, Steiger E: Does home parenteral nutrition (HPN) promote normal nutritional status? (abstr) ASPEN, February 1980 24. Gulledge AD, Juguilon BC, Ahluwalia S: Psychological issues in evaluating patients on HPN. J Parent Ent Nutrit 3, 1979 25. Henker FO: Body-image conflict following trauma and surgery. Psychosomatics 20:812-820, 1979 26. Lipowski ZJ: The importance of body experiences for psychiatry. Compr Psychiatry 18:473479, 1977 at home. Am J Nurs 27. Baker DI: Hyperalimentation 74:1826-1829, 1974 D.C., 28. DSM III draft. First printing, Washington, American Psychiatric Association, 1978 29. Johnson AR: Ethical problems in home parenteral nutrition. J Parent Ent Nutrit 3:169-170, 1979 in short 30. Hooley R: Oral dietary recommendation bowel syndrome patients and patients on home hyperalimentation: assessing nutritional adequacy of home HPN program. Presented at the McGaw Home TPN Team Concept Seminar, December 1979

the given patient information

with (1) accepted normal values and (2) longitud-

MEASUREMENTS

Anthropometric measurements commonly used for the purpose of nutritional assessment recent weight fluctuations, triceps skinfold thickness, and mid-upper arm circumference.

are: weight, weight for height,

HPN for Short Bowel Syndrome

Il. LABORATORY

TESTS

Laboratory tests used in the evaluation of protein-calorie status include: serum albumin, serum transferrin, hemoglobin, hematocrit, nitrogen balance (as measured by 24 hour urea nitrogen excretion), and creatinine height index. Appropriate biochemical tests assessing vitamin and cell-mediated immunocompetence as evaluated by delayed hypersensitivity response to common recall antigens are general indicators of immune status and complete the biochemical profile. Ill. NUTRITIONAL

HISTORY

A nutritional history includes food tolerance/intolerance, dietary habits and patterns, gastrointestinal symptoms that the patient associated with oral food intake, socioeconomic and psychological influences, along with food intake data. Food intake data are obtained by asking the patient to recall or record the types and amounts of foods normally consumed during a specified time period (e.g., 24 hours, 3 days, 1 week). Nutritional history information may be used to (1) generate rough estimations of normal oral nutrient intake and (2) form the data base for patient education pertaining to diet, nutrition, and if applicable, oral dietary supplements used to augment HEN infusions. IV. CLINICAL

INFORMATION

Clinical signs of malnutrition are usually nonspecific. Nutrient deficiencies are seldom isolated, and resultant clinical manifestations arise from the composite malnutrition picture as well as from nonnutritional causes. Physical findings of value in nutritional assessment include abnormalities in hair, eyes, lips, tongue, teeth, glands, nails, skin, and subcutaneous tissues, along with systemic aberrations indicative of deficiency diseases. Sus icious ph sical findings are further investigated by appropriate anthropometric or biochemical evaluation. In addition, t Re medica %surgical history is evaluated for interrelationships between disease process and the parameters used for nutritional assessment. Overall assessment of nutritional status may be derived in any number of ways. At the Cleveland Clinic Foundation, a point system, consisting of those parameters correlated with increased postoperative morbidity and mortality, has been developed and is currently being used for the purpose of objectively determining somatic and visceral protein status. Efficacy of HPN may be measured by serial assessments of protein-calorie, along with vitamin, mineral, and lipid nutrition. In the stable outpatient, nutritional assessment may occur at six-month to yearly intervals, while in the new HPN patient, biweekly to monthly evaluations may be indicated.

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