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Feeding methods for demented patients in end stage of life
A Quality of Life Issue
Feeding Methods for Demented Patients in End Stage of Life Absence of pain is the goal for these patients EVA MICHAELSSON ASTRID NORBERG BO NORBERG Some patients with senile dementia have severe difficulty in eating during the end stage of life. As the symptoms of dementia worsen, it gradually becomes impossible to nourish these patients by spoon-feeding. Alternative methods are tube-feeding and subcutaneous or intravenous infusion. Another alternative is to allow patients to die of water deficiency but to keep them comfortable by moistening their mouths with small volumes of fluid(I-3). The aim of the present investigation was to describe senile demented patients' severe eating difficulties and, especially, the nursing activities to nourish and hydrate them. This article is based on semistructured interviews with nursing personnel, ques-
lionnaires, and patient observations by nurses for three weeks. Our results should be confirmed or rejected through study of a larger representative sample population during a longer observation period. Sampling and Interviews The chiefs of the geriatric medicine departments in the five counties of Sweden's South Health Care Region were asked which wards housed senile demented patients in hospitals with more than 500 beds and in their Eva Michaelsson, RNT, is a doctoral student at the Department of Community Health Sciences, University of Lund/Malm6, Maim0, Sweden. Astrid Norberg, RN, PhD, is professor ofnursing, Department of Advanced Nursing, and Bo Norberg, MD, PhD, is associate professor, Department of Internal Medicine, University of Umea, Umea; Sweden. The authors thank the nurses of the described wards for their cooperation. The work on which this article is based was supported by grant No. 0393 from The Swedish Work Environment Fund. Address reprint requests to Astrid Norberg, Department of Advanced Nursing, University of Umell, Umea, Sweden.
associated nursing homes of more than 110 beds. The geriatricians identified 157 wards. Comparatively large units were sampled in order to provide a survey of current nursing practices. Approximately 20 percent of the wards in each county, a total of 32, were selected randomly for study. One ward sister (head nurse) reported that her ward had no experience in the nursing ofdying patients with senile dementia. (Another ward sister was not approached due to an administrative error.) Interviews were conducted on 30 wards during the fall of 1981. These wards had approximately 800 beds, 400 of them occupied by patients with senile dementia. Senile dementia was defined as a grave and progressive deterioration in the cognitive, emotional, and conative function of a previously healthy individual when focal causes can be excluded. This is the definition commonly used by physicians. The ward sister and one practical
Geriatric Nursing March/April 1987 69
nurse (mental nurse) from every ward were interviewed together.* The practical nurse was selected by the clinical supervisor on the basis of "great experience." The interviews, carried o u t i n December of 1981, were semistructured conversations that were tape-recorded except in 2 wards that did not permit taping. The interviews dealt with five topics: criteria for the diagnosis "end stage of life," spoon-feeding, tube-feeding, infusions, and mouth moistening.
Questionnaires and Observations The 30 ward sisters were asked to observe and record on a questionnaire the behavior of senile demented patients with severe eating difficulties during three weeks in the autumn of 1982. Twenty-nine questionnaires were completed. The ward sisters noted the patients' ages, an overall assessment of their daily difficulty in eating, and whether they received fluid by tube or infusion. When a water-balance chart was written, the ward sister recorded the total 24-hour volume of fluid given and excreted. Subsequent analysis included notations on the sample population, provided that notations were made daily from November 8 through November 28, 1982. Notations were complete for 69 patients in 17 wards.
Interview Findings The ward sisters from 11 wards reported that they had no senile demented patients with severe eating difficulties during the observation period. In one ward, there had been senile demented patients with eating difficulties, but notations were not made for the total observation period. In total, data on 11 patients (14 percent) had to be excluded from analysis because of deficient documentation. Possible explanations of this drop-out are recovering ability to self-feed, move to another ward, or death. CRITERIA FOR THE DIAGNOSIS "'END
*In Sweden, practical nurses have two years o f education at the high school level. During their second year, they choose to concentrate on somatic or psychiatric care.
70 Geriatric Nursing March/April 1987
STAGE O F L I F E . ' " The interviewees agreed that it is difficult to say for sure that a patient is in the end stage of life. In 6 wards the interviewees said that they sensed when the patient was dying, but they could give no reason for this feeling except intuition. The criteria most often mentioned were, in rank order: • Changes in appearance: The patient looks thin and sunken. The face looks tapering and the nose pale. T h e feet are cold. The patient's coldness appears to come from within. The patient becomes cyanotic. • Changes in respiration: CheyneStokes respirations are common.
ASSISTED SPOON-FEEDING.
In
the
end stage of life, spoon-feeding often becomes difficult. Two types of probterns were mentioned: Dying patients display refusal by turning the head away and by not opening the mouth. The nurses could not determine whether this behavior was caused by a wish to die or by the brain lesions of dementia that prevent patients from realizing the meaning of eating and accomplishing the act of eating. The patient had difficultyswallowing or was totally unable to swallow. The interviewees described various methods to persuade patients to open their mouth. Dipping a straw in
Nurses could not always decide whether the patients' refusal of food was a conscious wish to die or the result of the brain lesions of dementia.
• Eating difficulties caused by impaired swallowing, and signs of dehydration. • Diminished psychic contact with the caregivers. Several interviewees believed that dying patients were aware of their presence even though they had lost the ability to communicate with them. • Changes in pulse and blood pressure. • Decreased urine volume secondary t O renal failure. • A special body odor described by some nurses as "corpse odor." Several interviewees emphasized that it is important to diagnose the dying state because patients ought to receive active treatment if there is hope of improvement. When that diagnosis was uncertain, two different practices were described: The patient was supported with infusions for approximately one week. If the patient's condition had not improved by then, infusions were withdrawn. The patient was nursed without parenteral fluid for approximately one week. If still alive, the patient was then supported by infusions.
a delicious fluid and touching it to the lips lets the patient taste and feel it. Because many demented patients dislike first courses but like sweets, the nurse can spoon-feed these foods alternately. When greeted by name, the patient often opens his mouth in order to answer, and the nurse can put the spoon in his mouth. Also closing the nostrils will force him to open his mouth to breathe. Swallowing reflexes can be elicited by strok, ing the throat with the spoon. When spoon-feeding is impossible, the nurse can use a pipe-mug, baby mug, or paper mug. The paper mug can easily be formed to fit the patient's lips. When swallowing solid food becomes difficult, patients receive fluids, beginning with thick soup and sweet soup. In a later stage, patients accept only sweet soups. Gruel and milk are avoided because they form mucus in the mouth. Sour milk is more acceptable, often with an abundance of sugar. Still later, only clear fluids, and eventually water, are given. None of the nurses interviewed had offered physiological saline. Thick liquids are easier for pa-
tients to swallow, but thin liquids are tle fluid could be administered by easier to cough up. When death is ap- spoon-feeding, infusions or tubeproaching, caregivers give priority to feeding were given. INFUSIONS. The interviewees from fluids that are easily Coughed up, should they enter the trachea rather 25 wards said they occasionally gave intravenous infusions to end-stage than the esophagus. Opinions differed about the best patients. In 12 of these wards, IVs temperature of the nutritive fluid. were preferred to subcutaneous infuWarm liquids are good, because pa- sions for the following reasons: tients often are cool. Tepid fluid is • The prognosis was uncertain. • The patient might feel thirsty. good, because cold fluid may hurt the mouth. Cold fluid isgood, because • The urinary catheter could becough reflexes are elicited rapidly if come blocked if not rinsed by a suffithe patient swallows "the wrong cient amount of urine. way." • Relatives wished infusions to be In most of the wards, the given. interviewees said that water-balance • Subcutaneous infusions could charts were written for two reasons. not be given, for example, if the paFirst, the chart spurs caregivers to vi- tient was markedly cachectic. • IVs were considered less painful sit the patient often and offer fluid. However, no specific volumes of than subcutaneous infusions. The interviewees from 20 wards fluid were required. Second, the chart provides a check that the pa- said they occasionally gave subcutatient gets enough fluid. When too lit- neous infusions. In 9 of these wards,
the subcutaneous route was preferred because: • The prognosis was known. • The patient might feel thirsty. • Relatives wished infusions to be given. • IVs could not be given since, for example, the patient's yeins were brittle or registered nurses were not available. • Pulmonary edema is a risk when IVs are given too rapidly. • The need for parenteral fluid was limited, because the patient could take some fluid by mouth. In 4 wards, intravenous infusions were used as often as subcutaneous infusions. In 17 of the 25 wards that usually administered infusions, some patients were allowed to die without infusions, at the request of relatives. For instance, no infusions were given to dying patients with senile demen-
LEVEL OF FEEDING DIFFICULTY BASED ON THE TOTAL NUMBER OF OBSERVATIONS (PATIENTS x DAYS). Number of Observations
%
It is easy to feed the patient solid food and fluids
822
61
It is difficult to feed the patient solid food and easy to feed fluids
Levelofdifficulty
139
10
It is easy to feed the patient with solid food and difficult to feed fluids
137
10
It is difficult to feed the patient solid food and fluids
249
19
Sum
1347
100
SPECIFIC EATING PROBLEMS OF 33 PATIENTS Type of problem Refuse-like behavior Primitive reflexes
Number of patients 28 7
Open mouth
13
Dysphagia
13
Some of these 33 patients displayed more than one of the specified problems. Another 15 patients had other eating d!fficulties. Twenty patients were easily fed solids or liquids or both.
Geriatric Nursing March/April 1987 71
tia in 5 of 30 wards. In 1 of these wards, gastric tubes rarely were used. The reasons cited for not giving parenteral fluids were that infusions prolong the patient's meaningless suffering; relatives wished that infusions not be given, the patient had previously expressed a wish to be a12 lowed to die without infusions; and infusions produce respiratory distress in the dying patient. MOUTH CARE AND MOUTH MOISTENiNG. Drying of the oral cavity creates
serious discomfort in the end stage of life regardless of the type of fluid therapy infusion, tube-feeding, or mouth moistening. Mouth breathing and general dehydration are contributing factors. The interviewees from I ward thought that infusions reduce oral dryness but interviewees from 15 wards did not think infusions help at all, and interviewees from 14 wards had no definite opinion on the matter. To clean and moisten the oral cavity, most caregivers reported using several preparations: water (19 wards), Ascoxal® (17), a tablet that contains ascorbic acid, sodium percarbonate, and anhydrous sulphuric copper, and is dissolved in water; mouth water (8), a tasty, fine-smelling preparation oflasendel oil, menthol, peppermint oil, and antiseptics dissolved in ethanol and water; bromhexine mixture (6), mineral water (4), chlorhexidine solution (1), and gentiana violet (I). No ward used physiological saline. Interviewees from I0 wards said they used lemon water or lemon swabs to stimulate saliva secretion. Saliva substitutes were used by only one ward, but found to be of questionable value. All wards applied some lipid preparation tO patients' lips (boraxglycerine, cerate, Vaseline, lipid vitamin salve). Isolated wards used lumps of ice (1) and lemonade (1) to moisten oral tissues. In all wards, mouth care was provided when needed, from once an hour to once in 12 hours. Recorded Patient Observations The 69 patients with severe eating difficulties, as defined b y the nurses ofeach ward, were old, ranging from
72 Geriatric Nursing March/April 1987
68 to 99. The median age was 84 years, the interquartile range 78 to 88. One patient received intravenous infusions during the whole observation period; 68 were spoon-fed. Of these 68, one woman regained ability to feed herself, and another patient was fed via gastric tube for 18 days in addition to IVs. Four patients died during the observation period. Table 1 shows that of 1,347 observations of feeding, 61 percent found all patients easy to feed by spoon and 19 percent found patients very difficult to feed by spoon. Of the 68 spoon-fed patients, 31 had a feeding difficulty that was assessed as constant during the observation period; 37 had a feeding difficulty that varied. The nurses were asked to note certain types of eating difficulty that the researchers had found to be common among senile demented patients during previous clinical observations:
solid and liquid food, and I as easy to feed liquids. The nurses recorded the volume of fluid received daily by 34 of the 68 spoon-fed patients. It is evident from Figure 1 that each patient's fluid intake varied widely from day to day. Patient No. 1, for instance, had a median fluid supply of 300 ml daily. She died during the observation period. She was the only patient in this sample who seems to have expired from dehydration. The median fluid volume for all patients was 1, 100 ml; the range was I00 to 2,100 ml. Discussion Reports by the ward sisters suggest that the interviewed wards with about 800 beds housed approximately 400 patients who had senile dementia. The diagnosis of senile dementia may be based on shaky evidence, but nevertheless out of a population of some 400 dementia patients, only 69 (15 to 20 percent)
Nursing patients with advanced senile dementia, although economically and socially stressful, can be borne by a health care system sponsored by society.
• Refuse-like behavior--the patient turns his head away, keeps his mouth shut, or spits out the food. • Primitive reflexes--the patient sucks or bites the spoon. + Open m o u t h - - t h e patient does not shut his mouth and spills out his food. • Dysphagia--the patient seems unable to swallow food placed in his mouth (1). The prevalence of these particular eating difficulties in the observed patients is shown. Conceivably, a patient could have more than one problem. The defined eating difficulties were reported for 33 patients. Another 15 patients had other types of eating difficulties, such as closing the mouth but nevertheless spilling out food. The type of eating difficulty was not noted in 20 patients, 19 of whom were assessed as easy to feed
exhibited eating difficulties during the questionnaire-recorded observation period. It should be emphasized that the severity of their eating difficulties was assessed subjectively by the ward sisters. Their assessments were influenced by their frame of reference and the quality of their contact with the patients and with the nurses. Interestingly, patients were difficult to spoon-feed both solid and liquid food in only 19 percent of the observations (Table 1). On all other occasions, the patients were reportedly easy to feed solids, fluids, or both. The data suggest that the nurses seldom experienced extreme difficulty in spoon-feeding patients who suffered from senile dementia. Notations on the kind of eating difficulties were lacking for 20 patients in the questionnaire study (29 per-
cent). It is reasonable to assume that these patients did not display the specific eating difficulties asked for during the observation period, because 20 of them were easily fed with fluid food. These observations support the conclusion that refuse-like behavior, primitive reflexes, open mouth, and dysphagia were rare among the approximately 400 patients. A third clue to the degree of eating difficulty is provided by the waterbalance charts that were recorded for 34 of the observed patients. Institution of a water-balance chart suggests that a patient is considered at risk of dehydration. The median volume of daily fluid received, 1,100 ml, supports the nurses' subjective assessment that these 34 patients were at risk for dehydration. For most of the patients, however, the fluid deficiency was compensated for by intensified observation and spoon-feeding. The present study can give only a clue to the incidence ofsevere eating difficulties among the demented. Our observations suggest, nevertheless, that the nursing of patients with advanced senile dementia, although economically and psychologically stressful, can still be accomplished in a health care system sponsored by the society. Interviews with the nurses indicated that psychological and ethical problems may dominate the nursing of senile demented patients. The lack of true answers to the daily problems of such nursing is embarrassing. At present, no one can give an authoritative declaration of right or wrong with regard to spoon-feeding, infusions, tube-feeding, or mouth care. It is, however, highly desirable to eliminate use of the physical force described. The inability of senile demented patients to eat and drink produces a conflict in nurses. They wish to keep patients alive without forcing them to eat and without hurting them. However, when patients "refuse" to eat, nurses feel obliged to force them in order to sustain life(l-2). In this situation, tube-feeding is the ultimate means of feeding. The ethical-legal problems of not feeding patients in the final stage of dementia have been touched on in
The Median Dall~ RUld~lntake 0f 34.P,Mients During a Three.Week Observatlon,Per[od,
ml fluid
IT
I tIt
1000 -
oI
|
I
I
I
!
1
9
18
,
I
PaUants
Each patient's daily fluid Intake varied. The median fluid intake of each individual is shown above and the intralndlvidual dispersion Is Indicated by the Interquartile range. The fluid Intakes are ranked in order of magnitude.
the literature but not thoroughly explored. As the number of elderly people increases in Western societies, it is reasonable to expect a parallel increase in the number of senile demented patients. Preserving their lives has economic consequences. Ethicists are adapting to this fact by attempting to replace the traditional sanctity-of-life ethics with a qualityof-life ethics(4-6). More exact information is needed on the prevalence, degree, and kind of eating difficulties among patients with senile dementia. Experience has demonstrated that the care burden is due mainly to immobility, urinary and bowel incontinence, and eating difficulties. All three of these disturbances develop more or less simultaneously during the end stage of the patient's life. Despite the limitations, this preliminary investigation suggests that the prevalence of severe eating difficulties in patients with senile dementia and presumably the associated
care consumption is low enough to be borne by a health care system supported mainly by society. Whatever the financial support, it is desirable that the economic costs be uncovered by further quantitative studies. Otherwise, myths about the economic burden placed on society by senile demented patients could adversely affect psychological and ethical reasoning. References 1. Norberg, A., and others. Ethical conflicts in longterm care of the aged: nutritional problems and the patient-care worker relationship. Br.Med.J. 280:.377-378, Feb. 9, 1980. 2. . Ethical problems in feeding patients with advanced dementia. Br.Med.Z 281:847-848, Sept. 27, 1980. 3. Bexell, G., and others. Ethical conflicts in longterm care of aged patients: analysis of the tubefeeding decision by means of a teleological ethical model. EthicsSci.Med. 7:141-145, 1980. 4. Kolata, G. B. Withholding medical treatment. Science205:882-885, Aug_ 31, 1979. 5. Robertson, G. S. Dealing with the brain-damaged old-dignity before sanctity. J.Med.Ethics 8:173179, Dec. 1982. 6. Levinson, A. R. Termination of life support systems in the elderly. Ethical issues. J.Ger.Psychiatr. 14(I):71-85, 1981.
Geriatric Nursing M a r c h / A p r i l 1987 7 3
I 34
Feeding Methods for Demented Patients in End Stage of Life Absence of pain is the goal for these patients EVA MICHAELSSON ASTRID NORBERG BO NORBERG Some patients with senile dementia have severe difficulty in eating during the end stage of life. As the symptoms of dementia worsen, it gradually becomes impossible to nourish these patients by spoon-feeding. Alternative methods are tube-feeding and subcutaneous or intravenous infusion. Another alternative is to allow patients to die of water deficiency but to keep them comfortable by moistening their mouths with small volumes of fluid(I-3). The aim of the present investigation was to describe senile demented patients' severe eating difficulties and, especially, the nursing activities to nourish and hydrate them. This article is based on semistructured interviews with nursing personnel, ques-
lionnaires, and patient observations by nurses for three weeks. Our results should be confirmed or rejected through study of a larger representative sample population during a longer observation period. Sampling and Interviews The chiefs of the geriatric medicine departments in the five counties of Sweden's South Health Care Region were asked which wards housed senile demented patients in hospitals with more than 500 beds and in their Eva Michaelsson, RNT, is a doctoral student at the Department of Community Health Sciences, University of Lund/Malm6, Maim0, Sweden. Astrid Norberg, RN, PhD, is professor ofnursing, Department of Advanced Nursing, and Bo Norberg, MD, PhD, is associate professor, Department of Internal Medicine, University of Umea, Umea; Sweden. The authors thank the nurses of the described wards for their cooperation. The work on which this article is based was supported by grant No. 0393 from The Swedish Work Environment Fund. Address reprint requests to Astrid Norberg, Department of Advanced Nursing, University of Umell, Umea, Sweden.
associated nursing homes of more than 110 beds. The geriatricians identified 157 wards. Comparatively large units were sampled in order to provide a survey of current nursing practices. Approximately 20 percent of the wards in each county, a total of 32, were selected randomly for study. One ward sister (head nurse) reported that her ward had no experience in the nursing ofdying patients with senile dementia. (Another ward sister was not approached due to an administrative error.) Interviews were conducted on 30 wards during the fall of 1981. These wards had approximately 800 beds, 400 of them occupied by patients with senile dementia. Senile dementia was defined as a grave and progressive deterioration in the cognitive, emotional, and conative function of a previously healthy individual when focal causes can be excluded. This is the definition commonly used by physicians. The ward sister and one practical
Geriatric Nursing March/April 1987 69
nurse (mental nurse) from every ward were interviewed together.* The practical nurse was selected by the clinical supervisor on the basis of "great experience." The interviews, carried o u t i n December of 1981, were semistructured conversations that were tape-recorded except in 2 wards that did not permit taping. The interviews dealt with five topics: criteria for the diagnosis "end stage of life," spoon-feeding, tube-feeding, infusions, and mouth moistening.
Questionnaires and Observations The 30 ward sisters were asked to observe and record on a questionnaire the behavior of senile demented patients with severe eating difficulties during three weeks in the autumn of 1982. Twenty-nine questionnaires were completed. The ward sisters noted the patients' ages, an overall assessment of their daily difficulty in eating, and whether they received fluid by tube or infusion. When a water-balance chart was written, the ward sister recorded the total 24-hour volume of fluid given and excreted. Subsequent analysis included notations on the sample population, provided that notations were made daily from November 8 through November 28, 1982. Notations were complete for 69 patients in 17 wards.
Interview Findings The ward sisters from 11 wards reported that they had no senile demented patients with severe eating difficulties during the observation period. In one ward, there had been senile demented patients with eating difficulties, but notations were not made for the total observation period. In total, data on 11 patients (14 percent) had to be excluded from analysis because of deficient documentation. Possible explanations of this drop-out are recovering ability to self-feed, move to another ward, or death. CRITERIA FOR THE DIAGNOSIS "'END
*In Sweden, practical nurses have two years o f education at the high school level. During their second year, they choose to concentrate on somatic or psychiatric care.
70 Geriatric Nursing March/April 1987
STAGE O F L I F E . ' " The interviewees agreed that it is difficult to say for sure that a patient is in the end stage of life. In 6 wards the interviewees said that they sensed when the patient was dying, but they could give no reason for this feeling except intuition. The criteria most often mentioned were, in rank order: • Changes in appearance: The patient looks thin and sunken. The face looks tapering and the nose pale. T h e feet are cold. The patient's coldness appears to come from within. The patient becomes cyanotic. • Changes in respiration: CheyneStokes respirations are common.
ASSISTED SPOON-FEEDING.
In
the
end stage of life, spoon-feeding often becomes difficult. Two types of probterns were mentioned: Dying patients display refusal by turning the head away and by not opening the mouth. The nurses could not determine whether this behavior was caused by a wish to die or by the brain lesions of dementia that prevent patients from realizing the meaning of eating and accomplishing the act of eating. The patient had difficultyswallowing or was totally unable to swallow. The interviewees described various methods to persuade patients to open their mouth. Dipping a straw in
Nurses could not always decide whether the patients' refusal of food was a conscious wish to die or the result of the brain lesions of dementia.
• Eating difficulties caused by impaired swallowing, and signs of dehydration. • Diminished psychic contact with the caregivers. Several interviewees believed that dying patients were aware of their presence even though they had lost the ability to communicate with them. • Changes in pulse and blood pressure. • Decreased urine volume secondary t O renal failure. • A special body odor described by some nurses as "corpse odor." Several interviewees emphasized that it is important to diagnose the dying state because patients ought to receive active treatment if there is hope of improvement. When that diagnosis was uncertain, two different practices were described: The patient was supported with infusions for approximately one week. If the patient's condition had not improved by then, infusions were withdrawn. The patient was nursed without parenteral fluid for approximately one week. If still alive, the patient was then supported by infusions.
a delicious fluid and touching it to the lips lets the patient taste and feel it. Because many demented patients dislike first courses but like sweets, the nurse can spoon-feed these foods alternately. When greeted by name, the patient often opens his mouth in order to answer, and the nurse can put the spoon in his mouth. Also closing the nostrils will force him to open his mouth to breathe. Swallowing reflexes can be elicited by strok, ing the throat with the spoon. When spoon-feeding is impossible, the nurse can use a pipe-mug, baby mug, or paper mug. The paper mug can easily be formed to fit the patient's lips. When swallowing solid food becomes difficult, patients receive fluids, beginning with thick soup and sweet soup. In a later stage, patients accept only sweet soups. Gruel and milk are avoided because they form mucus in the mouth. Sour milk is more acceptable, often with an abundance of sugar. Still later, only clear fluids, and eventually water, are given. None of the nurses interviewed had offered physiological saline. Thick liquids are easier for pa-
tients to swallow, but thin liquids are tle fluid could be administered by easier to cough up. When death is ap- spoon-feeding, infusions or tubeproaching, caregivers give priority to feeding were given. INFUSIONS. The interviewees from fluids that are easily Coughed up, should they enter the trachea rather 25 wards said they occasionally gave intravenous infusions to end-stage than the esophagus. Opinions differed about the best patients. In 12 of these wards, IVs temperature of the nutritive fluid. were preferred to subcutaneous infuWarm liquids are good, because pa- sions for the following reasons: tients often are cool. Tepid fluid is • The prognosis was uncertain. • The patient might feel thirsty. good, because cold fluid may hurt the mouth. Cold fluid isgood, because • The urinary catheter could becough reflexes are elicited rapidly if come blocked if not rinsed by a suffithe patient swallows "the wrong cient amount of urine. way." • Relatives wished infusions to be In most of the wards, the given. interviewees said that water-balance • Subcutaneous infusions could charts were written for two reasons. not be given, for example, if the paFirst, the chart spurs caregivers to vi- tient was markedly cachectic. • IVs were considered less painful sit the patient often and offer fluid. However, no specific volumes of than subcutaneous infusions. The interviewees from 20 wards fluid were required. Second, the chart provides a check that the pa- said they occasionally gave subcutatient gets enough fluid. When too lit- neous infusions. In 9 of these wards,
the subcutaneous route was preferred because: • The prognosis was known. • The patient might feel thirsty. • Relatives wished infusions to be given. • IVs could not be given since, for example, the patient's yeins were brittle or registered nurses were not available. • Pulmonary edema is a risk when IVs are given too rapidly. • The need for parenteral fluid was limited, because the patient could take some fluid by mouth. In 4 wards, intravenous infusions were used as often as subcutaneous infusions. In 17 of the 25 wards that usually administered infusions, some patients were allowed to die without infusions, at the request of relatives. For instance, no infusions were given to dying patients with senile demen-
LEVEL OF FEEDING DIFFICULTY BASED ON THE TOTAL NUMBER OF OBSERVATIONS (PATIENTS x DAYS). Number of Observations
%
It is easy to feed the patient solid food and fluids
822
61
It is difficult to feed the patient solid food and easy to feed fluids
Levelofdifficulty
139
10
It is easy to feed the patient with solid food and difficult to feed fluids
137
10
It is difficult to feed the patient solid food and fluids
249
19
Sum
1347
100
SPECIFIC EATING PROBLEMS OF 33 PATIENTS Type of problem Refuse-like behavior Primitive reflexes
Number of patients 28 7
Open mouth
13
Dysphagia
13
Some of these 33 patients displayed more than one of the specified problems. Another 15 patients had other eating d!fficulties. Twenty patients were easily fed solids or liquids or both.
Geriatric Nursing March/April 1987 71
tia in 5 of 30 wards. In 1 of these wards, gastric tubes rarely were used. The reasons cited for not giving parenteral fluids were that infusions prolong the patient's meaningless suffering; relatives wished that infusions not be given, the patient had previously expressed a wish to be a12 lowed to die without infusions; and infusions produce respiratory distress in the dying patient. MOUTH CARE AND MOUTH MOISTENiNG. Drying of the oral cavity creates
serious discomfort in the end stage of life regardless of the type of fluid therapy infusion, tube-feeding, or mouth moistening. Mouth breathing and general dehydration are contributing factors. The interviewees from I ward thought that infusions reduce oral dryness but interviewees from 15 wards did not think infusions help at all, and interviewees from 14 wards had no definite opinion on the matter. To clean and moisten the oral cavity, most caregivers reported using several preparations: water (19 wards), Ascoxal® (17), a tablet that contains ascorbic acid, sodium percarbonate, and anhydrous sulphuric copper, and is dissolved in water; mouth water (8), a tasty, fine-smelling preparation oflasendel oil, menthol, peppermint oil, and antiseptics dissolved in ethanol and water; bromhexine mixture (6), mineral water (4), chlorhexidine solution (1), and gentiana violet (I). No ward used physiological saline. Interviewees from I0 wards said they used lemon water or lemon swabs to stimulate saliva secretion. Saliva substitutes were used by only one ward, but found to be of questionable value. All wards applied some lipid preparation tO patients' lips (boraxglycerine, cerate, Vaseline, lipid vitamin salve). Isolated wards used lumps of ice (1) and lemonade (1) to moisten oral tissues. In all wards, mouth care was provided when needed, from once an hour to once in 12 hours. Recorded Patient Observations The 69 patients with severe eating difficulties, as defined b y the nurses ofeach ward, were old, ranging from
72 Geriatric Nursing March/April 1987
68 to 99. The median age was 84 years, the interquartile range 78 to 88. One patient received intravenous infusions during the whole observation period; 68 were spoon-fed. Of these 68, one woman regained ability to feed herself, and another patient was fed via gastric tube for 18 days in addition to IVs. Four patients died during the observation period. Table 1 shows that of 1,347 observations of feeding, 61 percent found all patients easy to feed by spoon and 19 percent found patients very difficult to feed by spoon. Of the 68 spoon-fed patients, 31 had a feeding difficulty that was assessed as constant during the observation period; 37 had a feeding difficulty that varied. The nurses were asked to note certain types of eating difficulty that the researchers had found to be common among senile demented patients during previous clinical observations:
solid and liquid food, and I as easy to feed liquids. The nurses recorded the volume of fluid received daily by 34 of the 68 spoon-fed patients. It is evident from Figure 1 that each patient's fluid intake varied widely from day to day. Patient No. 1, for instance, had a median fluid supply of 300 ml daily. She died during the observation period. She was the only patient in this sample who seems to have expired from dehydration. The median fluid volume for all patients was 1, 100 ml; the range was I00 to 2,100 ml. Discussion Reports by the ward sisters suggest that the interviewed wards with about 800 beds housed approximately 400 patients who had senile dementia. The diagnosis of senile dementia may be based on shaky evidence, but nevertheless out of a population of some 400 dementia patients, only 69 (15 to 20 percent)
Nursing patients with advanced senile dementia, although economically and socially stressful, can be borne by a health care system sponsored by society.
• Refuse-like behavior--the patient turns his head away, keeps his mouth shut, or spits out the food. • Primitive reflexes--the patient sucks or bites the spoon. + Open m o u t h - - t h e patient does not shut his mouth and spills out his food. • Dysphagia--the patient seems unable to swallow food placed in his mouth (1). The prevalence of these particular eating difficulties in the observed patients is shown. Conceivably, a patient could have more than one problem. The defined eating difficulties were reported for 33 patients. Another 15 patients had other types of eating difficulties, such as closing the mouth but nevertheless spilling out food. The type of eating difficulty was not noted in 20 patients, 19 of whom were assessed as easy to feed
exhibited eating difficulties during the questionnaire-recorded observation period. It should be emphasized that the severity of their eating difficulties was assessed subjectively by the ward sisters. Their assessments were influenced by their frame of reference and the quality of their contact with the patients and with the nurses. Interestingly, patients were difficult to spoon-feed both solid and liquid food in only 19 percent of the observations (Table 1). On all other occasions, the patients were reportedly easy to feed solids, fluids, or both. The data suggest that the nurses seldom experienced extreme difficulty in spoon-feeding patients who suffered from senile dementia. Notations on the kind of eating difficulties were lacking for 20 patients in the questionnaire study (29 per-
cent). It is reasonable to assume that these patients did not display the specific eating difficulties asked for during the observation period, because 20 of them were easily fed with fluid food. These observations support the conclusion that refuse-like behavior, primitive reflexes, open mouth, and dysphagia were rare among the approximately 400 patients. A third clue to the degree of eating difficulty is provided by the waterbalance charts that were recorded for 34 of the observed patients. Institution of a water-balance chart suggests that a patient is considered at risk of dehydration. The median volume of daily fluid received, 1,100 ml, supports the nurses' subjective assessment that these 34 patients were at risk for dehydration. For most of the patients, however, the fluid deficiency was compensated for by intensified observation and spoon-feeding. The present study can give only a clue to the incidence ofsevere eating difficulties among the demented. Our observations suggest, nevertheless, that the nursing of patients with advanced senile dementia, although economically and psychologically stressful, can still be accomplished in a health care system sponsored by the society. Interviews with the nurses indicated that psychological and ethical problems may dominate the nursing of senile demented patients. The lack of true answers to the daily problems of such nursing is embarrassing. At present, no one can give an authoritative declaration of right or wrong with regard to spoon-feeding, infusions, tube-feeding, or mouth care. It is, however, highly desirable to eliminate use of the physical force described. The inability of senile demented patients to eat and drink produces a conflict in nurses. They wish to keep patients alive without forcing them to eat and without hurting them. However, when patients "refuse" to eat, nurses feel obliged to force them in order to sustain life(l-2). In this situation, tube-feeding is the ultimate means of feeding. The ethical-legal problems of not feeding patients in the final stage of dementia have been touched on in
The Median Dall~ RUld~lntake 0f 34.P,Mients During a Three.Week Observatlon,Per[od,
ml fluid
IT
I tIt
1000 -
oI
|
I
I
I
!
1
9
18
,
I
PaUants
Each patient's daily fluid Intake varied. The median fluid intake of each individual is shown above and the intralndlvidual dispersion Is Indicated by the Interquartile range. The fluid Intakes are ranked in order of magnitude.
the literature but not thoroughly explored. As the number of elderly people increases in Western societies, it is reasonable to expect a parallel increase in the number of senile demented patients. Preserving their lives has economic consequences. Ethicists are adapting to this fact by attempting to replace the traditional sanctity-of-life ethics with a qualityof-life ethics(4-6). More exact information is needed on the prevalence, degree, and kind of eating difficulties among patients with senile dementia. Experience has demonstrated that the care burden is due mainly to immobility, urinary and bowel incontinence, and eating difficulties. All three of these disturbances develop more or less simultaneously during the end stage of the patient's life. Despite the limitations, this preliminary investigation suggests that the prevalence of severe eating difficulties in patients with senile dementia and presumably the associated
care consumption is low enough to be borne by a health care system supported mainly by society. Whatever the financial support, it is desirable that the economic costs be uncovered by further quantitative studies. Otherwise, myths about the economic burden placed on society by senile demented patients could adversely affect psychological and ethical reasoning. References 1. Norberg, A., and others. Ethical conflicts in longterm care of the aged: nutritional problems and the patient-care worker relationship. Br.Med.J. 280:.377-378, Feb. 9, 1980. 2. . Ethical problems in feeding patients with advanced dementia. Br.Med.Z 281:847-848, Sept. 27, 1980. 3. Bexell, G., and others. Ethical conflicts in longterm care of aged patients: analysis of the tubefeeding decision by means of a teleological ethical model. EthicsSci.Med. 7:141-145, 1980. 4. Kolata, G. B. Withholding medical treatment. Science205:882-885, Aug_ 31, 1979. 5. Robertson, G. S. Dealing with the brain-damaged old-dignity before sanctity. J.Med.Ethics 8:173179, Dec. 1982. 6. Levinson, A. R. Termination of life support systems in the elderly. Ethical issues. J.Ger.Psychiatr. 14(I):71-85, 1981.
Geriatric Nursing M a r c h / A p r i l 1987 7 3
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