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The hidden costs of chronic disease
J. chron. Dis. 1965, Vol. 18, pp. 505-507. Pergamon Press Ltd. Printed in Great Britain
Editorial THE HIDDEN
COSTS OF CHRONIC (Received
30 November
DISEASE
1964)
within the purview of economics to assess costs which have no monetary Loss of a limb may be appraised by conventional damage payments, but pain or deprivation are not so susceptible to measurement. Such immeasurable losses of serenity or function are the first to come to mind as typical of the ‘hidden costs of chronic disease.’ Nevertheless, many other hidden costs of chronic disease may have a monetary expression even though they may not emerge in the usual tables of expenditure or income. Conventionally, the costs of illness are the costs of medical treatment: fees for physicians and nurses, hospital charges, outlays for medications, prices of prosthetics, convalescent care, and such. Sometimes the costs include time lost from work, the denial of promotion or responsibility, or the shortening of expectancy of a normal productive life. But other costs of illness are seldom taken into account except by the family of the invalid. The following is an effort to enumerate some of these hidden costs in the hope that others with sufficient skill and patience may be motivated to acquire data and project totals with due regard for variations in the forms of illness and the economic and social responses. This essay is based upon presumptive experiences and attitudes of a model family in the $10,000 to $15,000 income bracket, in an Eastern urban setting, with modest educational and cultural interests, and limited disabilities associated with chronic illness. The diet of this family has to be somewhat specialized. Whatever the nature of the affliction, it may be assumed that certain foods are tabu and others essential. Perhaps there must be special precautions against obesity, cholesterol, purines, or sugars. Or perhaps a lack of stamina or mobility reduces the ability to save money with foods that may be purchased in quantity, prepared in the home, or favored in season. Opportunities to buy economically may have to be sacrificed. It may be that the family must order by phone from a high-priced neighborhood store rather than shop for bargains to carry home in a basket from the supermarket. The shelter available to this family is also a factor in the cost of the diet; for example, apartment dwellers cannot store foods in quantity, and those in furnished rooms may not even prepare their own meals. In a conservative mood, one can assume therefore that a family with chronic illness spends distinctly more for its food than one which is free to economize, especially if a high protein diet is indicated. The degree of disadvantage would seem to be determinable by data in carefully evaluated studies. Shelter in itself can represent a substantial additional cost to the family with chronic illness. The illness may require an extra separate bedroom with special facilities, such as a hospital bed, a wheel chair, an elevator, or hand rails. A kitchen
IT IS not
expression.
505
506
M,wzus ROSENBLUM
especially designed for a heart patient can be a substantial extra cost. In the presence of chronic illness, air-conditioning may be essential household equipment, as may dust eliminators, humidifiers, or dishwashers. The location of the home may be dictated by the mobility of the patient: it may not be on a grade or more than a block from public transportation or shopping facilities. It may be necessary to obtain a home with all rooms on one level. The actual additional cost of shelter almost defies calculation because of the variability of requirements, tastes, and judgments. A family which because of limited mobility elects to pay rent in an apartment may end up with a higher outlay for shelter than one which buys a ranch house adjacent to a drug store, delicatessen, and bus stop. Some disadvantage in shelter costs for the family with chronic illness may occur frequently. As to transportation, also intimately linked to shelter, the additional costs may range from requiring a specially equipped automobile, with power steering and power brakes if not air-conditioning, to nothing more than an occasional taxi fare. The incapacity of some chronically ill patients to drive may require extra mileage for the family car. Also illness may dictate travel only under first class conditions in contrast with the economies that others effect by travelling by car and perhaps camping out. Although on individual occasions the charge may be several times as high as the conventional, one might arbitrarily assign a small differential to the cost of transportation as one of the hidden charges of chronic disease. Even though one trip may cost a family $30 instead of $10, the $20 differential, if there is only one such trip in a year, will not loom large against an annual outlay of $1,000 for transportation. Superficially, it would not appear that clothing costs present any penalties to chronic illness, but there are a few. The chronically ill are less likely to be in a position to shop for the right selection or the best price. They are certainly at a disadvantage in the battle royal of the bargain basement. And they may require some clothing to be custom-made: a lift in one heel: a shortened sleeve; a reinforced or padded bodice. The costs of cleaning and maintaining clothing will likely be higher because of the greater frequency of accidents to the infirm and the incapacity to perform the cleaning at home. Alterations, too, will cost more when they have to be taken to a tailor. Therefore, a differential in the cost of clothing seems to be likely. Household operations can be especially expensive in the presence of chronic illness, Housework which might otherwise be routine for family members may have to be delegated to full- or part-time servants. Laundry, waxing, polishing, cleaning, cooking, and gardening are only a few of the tasks that build up operating expenses. Even if others in the family are hale, the demands on their time to provide special services, even companionship, to the invalid may oblige them to engage household help. Another hidden cost of household help is wastage and breakage by servants at a rate which ordinarily exceeds the rate experienced by members of the family. The mere presence of the help expands the need for space and food also. A substantial differential on household operations is a likely hidden cost of illness. Furnishings, other than those associated with medical care, are unlikely to be affected by illness unless there is a need to guard against allergies, to reduce the burden of cleaning or dusting, to use specially constructed mattresses or chairs,
Editorial
so7
or to provide lightweight movable chairs and tables. A slight differential may be a possibility. Recreational costs are even more susceptible to variations in taste and judgment than are shelter charges. They may imply an additional TV set in a bedroom or extra purchases of books or records for the sedentary patient, and perhaps binoculars or a telescope to compensate for limited mobility. The chances that recreation to serve the chronically ill will be more expensive than recreation for those able to travel, hunt, fish, and share in the night life and sports events of the community are slight. There might actually be a differential which implies an economy for the homebound family. An arbitrary judgment suggests a possible saving in recreational outlays for the family with chronic illness. Educational costs are likely to differ only if there is a need for re-education or retraining, which might ordinarily be counted in rehabilitation charges, or if illness in the home obliges the family to obtain private schooling or tutoring for the children. Sometimes a boarding school is indicated for children when there is illness in the home. A modest differential in charges may be typical of educational outlays of families with chronic illness, although individual differences may run from percentage increases of zero to 1000 per cent. The differentials described here suggest that the hidden costs of chronic illness may amount to several thousand dollars a year per family. A firm appraisal of specific costs might lead to better methods of meeting these costs. MARCUS ROSENBLUM
Alexandria, Va. 22314, U.S.A.
Editorial THE HIDDEN
COSTS OF CHRONIC (Received
30 November
DISEASE
1964)
within the purview of economics to assess costs which have no monetary Loss of a limb may be appraised by conventional damage payments, but pain or deprivation are not so susceptible to measurement. Such immeasurable losses of serenity or function are the first to come to mind as typical of the ‘hidden costs of chronic disease.’ Nevertheless, many other hidden costs of chronic disease may have a monetary expression even though they may not emerge in the usual tables of expenditure or income. Conventionally, the costs of illness are the costs of medical treatment: fees for physicians and nurses, hospital charges, outlays for medications, prices of prosthetics, convalescent care, and such. Sometimes the costs include time lost from work, the denial of promotion or responsibility, or the shortening of expectancy of a normal productive life. But other costs of illness are seldom taken into account except by the family of the invalid. The following is an effort to enumerate some of these hidden costs in the hope that others with sufficient skill and patience may be motivated to acquire data and project totals with due regard for variations in the forms of illness and the economic and social responses. This essay is based upon presumptive experiences and attitudes of a model family in the $10,000 to $15,000 income bracket, in an Eastern urban setting, with modest educational and cultural interests, and limited disabilities associated with chronic illness. The diet of this family has to be somewhat specialized. Whatever the nature of the affliction, it may be assumed that certain foods are tabu and others essential. Perhaps there must be special precautions against obesity, cholesterol, purines, or sugars. Or perhaps a lack of stamina or mobility reduces the ability to save money with foods that may be purchased in quantity, prepared in the home, or favored in season. Opportunities to buy economically may have to be sacrificed. It may be that the family must order by phone from a high-priced neighborhood store rather than shop for bargains to carry home in a basket from the supermarket. The shelter available to this family is also a factor in the cost of the diet; for example, apartment dwellers cannot store foods in quantity, and those in furnished rooms may not even prepare their own meals. In a conservative mood, one can assume therefore that a family with chronic illness spends distinctly more for its food than one which is free to economize, especially if a high protein diet is indicated. The degree of disadvantage would seem to be determinable by data in carefully evaluated studies. Shelter in itself can represent a substantial additional cost to the family with chronic illness. The illness may require an extra separate bedroom with special facilities, such as a hospital bed, a wheel chair, an elevator, or hand rails. A kitchen
IT IS not
expression.
505
506
M,wzus ROSENBLUM
especially designed for a heart patient can be a substantial extra cost. In the presence of chronic illness, air-conditioning may be essential household equipment, as may dust eliminators, humidifiers, or dishwashers. The location of the home may be dictated by the mobility of the patient: it may not be on a grade or more than a block from public transportation or shopping facilities. It may be necessary to obtain a home with all rooms on one level. The actual additional cost of shelter almost defies calculation because of the variability of requirements, tastes, and judgments. A family which because of limited mobility elects to pay rent in an apartment may end up with a higher outlay for shelter than one which buys a ranch house adjacent to a drug store, delicatessen, and bus stop. Some disadvantage in shelter costs for the family with chronic illness may occur frequently. As to transportation, also intimately linked to shelter, the additional costs may range from requiring a specially equipped automobile, with power steering and power brakes if not air-conditioning, to nothing more than an occasional taxi fare. The incapacity of some chronically ill patients to drive may require extra mileage for the family car. Also illness may dictate travel only under first class conditions in contrast with the economies that others effect by travelling by car and perhaps camping out. Although on individual occasions the charge may be several times as high as the conventional, one might arbitrarily assign a small differential to the cost of transportation as one of the hidden charges of chronic disease. Even though one trip may cost a family $30 instead of $10, the $20 differential, if there is only one such trip in a year, will not loom large against an annual outlay of $1,000 for transportation. Superficially, it would not appear that clothing costs present any penalties to chronic illness, but there are a few. The chronically ill are less likely to be in a position to shop for the right selection or the best price. They are certainly at a disadvantage in the battle royal of the bargain basement. And they may require some clothing to be custom-made: a lift in one heel: a shortened sleeve; a reinforced or padded bodice. The costs of cleaning and maintaining clothing will likely be higher because of the greater frequency of accidents to the infirm and the incapacity to perform the cleaning at home. Alterations, too, will cost more when they have to be taken to a tailor. Therefore, a differential in the cost of clothing seems to be likely. Household operations can be especially expensive in the presence of chronic illness, Housework which might otherwise be routine for family members may have to be delegated to full- or part-time servants. Laundry, waxing, polishing, cleaning, cooking, and gardening are only a few of the tasks that build up operating expenses. Even if others in the family are hale, the demands on their time to provide special services, even companionship, to the invalid may oblige them to engage household help. Another hidden cost of household help is wastage and breakage by servants at a rate which ordinarily exceeds the rate experienced by members of the family. The mere presence of the help expands the need for space and food also. A substantial differential on household operations is a likely hidden cost of illness. Furnishings, other than those associated with medical care, are unlikely to be affected by illness unless there is a need to guard against allergies, to reduce the burden of cleaning or dusting, to use specially constructed mattresses or chairs,
Editorial
so7
or to provide lightweight movable chairs and tables. A slight differential may be a possibility. Recreational costs are even more susceptible to variations in taste and judgment than are shelter charges. They may imply an additional TV set in a bedroom or extra purchases of books or records for the sedentary patient, and perhaps binoculars or a telescope to compensate for limited mobility. The chances that recreation to serve the chronically ill will be more expensive than recreation for those able to travel, hunt, fish, and share in the night life and sports events of the community are slight. There might actually be a differential which implies an economy for the homebound family. An arbitrary judgment suggests a possible saving in recreational outlays for the family with chronic illness. Educational costs are likely to differ only if there is a need for re-education or retraining, which might ordinarily be counted in rehabilitation charges, or if illness in the home obliges the family to obtain private schooling or tutoring for the children. Sometimes a boarding school is indicated for children when there is illness in the home. A modest differential in charges may be typical of educational outlays of families with chronic illness, although individual differences may run from percentage increases of zero to 1000 per cent. The differentials described here suggest that the hidden costs of chronic illness may amount to several thousand dollars a year per family. A firm appraisal of specific costs might lead to better methods of meeting these costs. MARCUS ROSENBLUM
Alexandria, Va. 22314, U.S.A.