Gerontechnological Interventions and the Health and Quality of Life of Older People

              Gerontechnological Interventions and the Health and Quality of Life of Older People M. Powell Lawton, Ph.D. Polisher Research Institute Philadelphia Geriatric Center 5301 Old York Road Philadelphia, PA 19141-2996 Phone: 215-456-2979 Fax: 215-456-2017 Invited address presented at Congress on Longevity and Quality of Life, Paris, May 18-24, 1998. I speak today to represent the social and psychological point of view on how interventions can benefit the quality of life of older people. Whether the intervention be pharmaceutical, biotechnological, or nutritional, we must define clearly what aspect of the older person's life we intend our intervention to benefit. Despite the emphasis of this entire congress on health, I suggest that treeiting physical illness and its symptoms constitutes only one part of our task. I shcill make a case for examining the benefits of any intervention on aspects of the quality of life that go beyond the domain of health. We should also seek subjective quality of life criteria that indicate not only relief from distress but also enhancement of enjoyment and purpose in life. Health and Quality of Life I shall begin with the theme of health-related quality of life . I would say that the most active topic in medicine today may be health-related quality of life (HRQOL). The objective presence of illness and sometimes its treatments may cause major changes in the affected individual's life. Longer life can mean compromised quality if the additional years involve enduring distressing or painful symptoms or if the treatment itself produces such side effects. Useful metrics such as "quality-adjusted life years" (QALYS) have been developed to estimate the value of additional years of life discounted for the conditions that compromise their quality, sometimes referred to as "health utility" (Fanshel & Bush, 1970). The recognition of such tradeoffs has been the starting point for consideration of the costs of extended life, expressed in terms of dollar costs of treatment in return for years of life which may be of lowered quality. Inevitably such accounting leads to ethical questions regarding priorities in treatment, including the consequence that lowered life quality may be used as a reason for withholding expensive forms of treatment. I find three faults with the concept and uses of HRQOL: The limitation of concern for c:\deslife\qolhe&i3.ms (5/1/98) 2 quality of life to the health domain, the inclusion of only negative intrusions into quality of life , and the frequent use of quality of life criteria based on the judgments of only healthy younger adults. First is Health-relatedness. It is difficult to find in the literature a clearly stated rationale as to why the study of quality of life and health requires us to ignore sources of quality of life other than health. The most I have seen is the simple statement that there are other domains of quality of life which eire not affected by health or are not themselves aspects of health and they are thus excluded by definition from the health-related quality of life discussion. Emphasis on the negative. The second problem is intimately associated with the first: Why does health-related quality of life research consider primarily negative deviations from a neutral level and rarely positive deviations above the average? The answer seems easy at first glance: Because poor health only degrades quality of life. Good health is the norm that we assume and therefore we rarely differentiate health in the average-to-superb range and health therefore is little involved in a consciously perceived relationship to high levels of quality of life. The tradeoff principle used in health-related quality of life research allows no input from the positive side. In health-related quality of life research it is a tradeoff between more chronological years and fewer quality years. The tradeoff that I see as equally important is the balance between losses as measured by the usual negative HRQOL indicators and the gains in living longer that accrue from nonhealth domains of everyday life. My assertion is that such gains may offset the distresses consequent to poor health, for some people, some of the time, and in different mixes depending on the person's hierarchy of personal needs and goals. If we measure only health-related quality of life, or worse yet, set medical-care policy only on the basis of health-related quality of life, we give no opportunity for the individual to balance the mix of distresses and pleasures. c:\deslife\qolhe&i3.ms (5/1/98) 3 These first two major problems with health-related quality of life are thus related to one another: The reason the health-related aspect is too limiting is because this restriction eliminates nonhealth-related sources of positive quality and therefore the possibility of trading some losses for other gains in assessing one's overall quality of life. A third criticism of the health-related quality of life stream of research is its assumption that the values attached to good and poor health states are the same across all individuals. The weights established for the major measure of quality-adjusted years of life, the Quality of Well-Being Scale, QOWBS, for example, used adults in good health as the standardization group (Kaplan & Bush, 1982). How would older people or those in poor health value life under compromised health states? Kaplan (1982) has suggested that good and poor health are judged by normative, rather than idiosyncratic, standards and therefore a judge's own state is not a major factor in such judgment. The evidence on this point is scant and mixed. One very compelling finding, however, was that people undergoing kidney dialysis were more tolerant of extended life under reduced quality of life conditions than were healthy adults (Churchill et al., 1987). Older normals were also more willing to accept a longer period of hospitalization in return for longer life than were younger people (O'Brien et al., 1977). This study also found that 60% of cognitively intact nursing home residents were likely to wish cardiopulmonary resuscitation to be applied in case of cardiac arrest and 33% would wish tube feeding even with permanent brain damage. Unfortunately no data are at hand to allow the direct comparison with the wishes of healthier elders or younger people. Therefore this question seems still worthwhile to explore further: Do people's standards for what constitutes an acceptable quality of life show signs of an adaptation process whereby lesser levels become more tolerable as their own health decreases? Dissatisfaction with these limitations of health-related quality of life has led me to suggest c:\deslife\qolhe&i3.ms (5/1/98) 4 an alternative broader view of quality of life. My definition of quality of life is "The multidimensional evaluation, by both intrapersonal and social-normative criteria, of the person-environment system of an individual" (Lawton, 1991, p. 6). "Multidimensional" refers to 4 sectors of quality of life: Behavioral competence, environment, subjective domain-specific quality of life, and generalized psychological well-being. I have depicted it thus: Figure 1 here Behavioral competence represents the social-normative evaluation of the person's functioning in the health, cognitive, time-use, and social domains. This includes signs and symptoms of illness, intellectual impairment, and deficits in activities of daily living, but it also includes satisfying leisure time pursuits and enjoyable interactions with others. Environment represents all that lies outside the body of the subject, evaluated also by socialnormative standards. The environment may be physical, personal, suprapersonal, or megasocial. Treatment and interventions fall into this sector. Subjective domain-specific quality of life is the person's own evaluation of the adequacy of everyday life in domains such as housing, community, employment, family, marriage, or leisure activities. Some definitions limit quality of life to this concept. I argue that we need to know both objective-normative qualities and subjective qualities before we can understand the toteil realm of quality of life. Psychological well-being represents the global level of evaluation of self-in-environment, subsuming much of what is thought of as mental health. In summary, I suggest that quality of life must consist not only of the subjective sectors (domain-specific perceived quality of life and c:\deslife\qolhe&i3.ms (5/1/98) 5 psychological well-being) but also of two sectors which may be assessed independently of the perceiving subject, behavioral competence and the objective environment. If we plan treatment for one patient, we clearly must know what goals the patient considers important and that patient's judgment about whether a given treatment facilitates the achievement of that subjective goal. But treatment must often be planned for aggregates of people. We can never hope to design a treatment that will be effective in helping all people to attain their major goals. We thus make statistical, or probabilistic, judgments about the proportion of people likely to value, or respond well to, a particular treatment. An example from the domain of aesthetic experience is the presence of a symphony orchestra in a city. Some proportion of citizens are tone deaf, others don't appreciate concert music. Because we know that some proportion of citizens will be enormously uplifted by hearing a local symphony, the existence of the orchestra constitutes an objective facet of quality of life, with no implication that all listeners will be affected similarly. These brief descriptions of 4 sectors of quality of life imply another dimension not fully conveyed by my definition. When the term "evaluation" is used, a polarity between positive evaluation and negative evaluation is assumed: If something is good, it must be not bad, and vice versa. In fact, much of our psychological research in recent decades has made it evident that psychological judgments and particularly emotional experiences are evaluated partially independently for their positive and negative components. The first research of this kind, dating from 30 years ago (Bradburn, 1969), showed that people could characterize their lives as a whole reasonably well in terms of how happy they were. Their emotional states were also measured. Not surprisingly, if they reported more negative emotions, their happiness was less. If they reported more positive emotions, their happiness was greater. The intriguing part of their findings was that negative feelings and positive feelings were not the opposite of one another. In fact, their correlation c:\deslife\qolhe&i3.ms (5/1/98) 6 was zero, in spite of the significant correlation of both with happiness. It is of interest too that increasing evidence from the areas of neuroscience has confirmed the structural and functional bases for the partial independence of positive and negative emotion. This research is relevant to my topic today because it illustrates how we should be asking not only about the distresses of everyday life in order to determine how much one's remaining life is worth; rather, we should also be asking simultaneously about how much gratification, enjoyment, fun, or elation there is in the person's daily life. I think of this duality as a redefinition of mental health designed to encompass its positive and negative features. Our basic hypothesis is that people engage in a process that has been called "hedonic calculus" (Lawton, 1996) whereby all positive and negative input into their lives is transformed into a construct of overall mental health, one of whose facets I have called "valuation of life." In turn, valuation of life, which has both cognitive and emotional components, is the inner motivator for decisions and behaviors that affect selection or rejection of treatments and interventions that prolong or do not prolong life. Our concept of valuation of life accepts that under many negative mental and physical health conditions, people may feel a diminished attachment to life. At the same time we sought a concept that could also allow the person to account for positive features that might counteract the negative. Valuation of life was the term used that would additionally express elusive concepts such as hope, purpose, sense of future, personal goals, persistence, and meaning in life. Valuation of life is defined as the subjectively experienced worth of the person's present life, weighted by the multitude of positive and negative features whose locus may be either within the person or in the environment. The distinction between positive and negative inputs to valuation of life expresses the frequent clinical observation that to some people, life appears very dear in spite of poor mental or physical health, while to others it appears of low value. c:\dcslife\qolhc&i3.ms (5/1/98) 7 Concepts like purpose in life (Crumbaugh, 1972), optimism (Scheier & Carver, 1985) and hope (Gottschalk, 1985) have been developed into scales, but no existing instrument fully represented the important facets noted earlier without also including items that expressed obviously positive or negative mental health. We attempted to purge the items' content of presumptions regarding mental health. How well we succeeded is a matter of degree. Obvious terms like happy, satisfied, discouraged, or depressed are absent. There is also no content that refers to lifespan, death, or health utility. Yet most items can obviously be characterized as representing desirable or undesirable qualities. The extent to which this important outcome is measured independently of its hypothesized antecedents is relative, certainly not absolute. The items composing the Positive Valuation of Life factor are shown in Table 1. The content reflects our target concepts while carefully avoiding concepts that might be confounded with the sources of quality of life or the outcome of health utility expressed in quality-adjusted life years or life-extension wishes. The items do express selected concepts used to denote positive mental health, but they are much more narrowly focused on our core ingredients-hope, purpose, meaning, the future, persistence, and personal goals-than are other measures such as Self-Esteem, Mastery, or Optimism. At this point the ingredients of my model of quality of life have been defined: There are 4 sectors, 2 objective and 2 subjective, which represent the sources of quality of life. I suggest that the first outcome of the many domains of quality of life is in the realm of psychological well-being or mental health. Valuation of life, which represents the mathematical integral of positive and negative quality of life, is the next more distant outcome. The ultimate outcome is the actual choices regarding prolongation or foreshortening of life, which we suggest are determined most clearly by valuation of life. The sources of quality of life, including health, strongly determine valuation of life, but valuation of life is a processing template that translates that input into wishes and behaviors 8 c:\deslife\qolhe&i3.ms (5/1/98) relating to how long one lives. I shall briefly describe the empirical data that our research has generated to test these hypotheses. You will see that in the real world many compromises have to be made in turning internal psychological processes and future hypothetical estimates into meaningful measures. For example, because we do not know what our research subjects will do about care and treatment decisions at the end of life, we had to ask them a set of hypothetical questions about how long they might wish to live under various health-compromised conditions--" Years of Desired Life." Here is what we measured and how we conceived the influences of the various components of our model. The first set of influences are basic background characteristics (age, gender, education, and race). Health then is a basic determinant of outcomes. We then chose measures of objective and subjective quality of life to ask what they, in turn, contributed to mental health, Valuation of Life, and Years of Desired Life. For this purpose we chose 3 domains of quality of life that have been shown to be important in elders' lives--their activities and their interaction with friends and with relatives, and the subjectively judged quality of each of those domains. Our earlier research had suggested that these types of engagement with the external world enhanced positive emotion but did not diminish depression (Lawton, 1983). Valuation of life was hypothesized to be affected by all of these factors, health, quality of life, and mental health. There were many complexities in our actual results, but they can be summarized in two statements: 1. 2. Most of the aspects of quality of life were related to valuation of life. However, when we examined the independent effects of all the variables depicted here, there was no independent contribution of either health or depression to valuation of life. Health and objective and subjective aspects of quality of life contributed to valuation of life but it was c:\deslife\qolhe&i3.ms (5/1/98) 9 primarily because the factors enhanced positive emotions, which in turn increased valuation of life. Thus our central psychological variable, valuation of life, did behave in most of the hypothesized ways. We can understand a great deal about the person's attachment to life in general through our measure of valuation of life. But what evidence do we have, first, that valuation of life has anything to do with whether people want to prolong or foreshorten their lives, and second, what reason do we have to believe that valuation of life is any different from any of our traditional measures of positive mental health? We have not yet followed these people to learn what health or longevity-related decisions they actually made. The best we could do was to ask them hypothetically about what they might prefer if their health declined in particular ways. This is the same principle used in much healthrelated quality of life research when health utilities are being measured. Table 2 shows the condiTable 2 about here tions we described to people when we asked, "How long would you like to live if ..." (each conditions was true). Our results were very clear: 1. The respondent's present health, quality of life, and mental health were rarely related independently to the length of time the person would like to live under any of the hypothetical compromised health conditions. 2. Higher valuation of life and occasionally higher judged quality of present time were related to the wish to live longer independently of all other variables. 3. Valuation of life was uniquely related to Years of Desired Life over and above any overlap it may have had with traditional measures of mental health. What do we conclude about assessing the effects of an intervention on quality of life? We conclude, first, that gerontological research is on the right track when it searches for measurable c:\deslife\qolhe&i3.ms (5/1/98) 10 outcomes in the quality of life arena. Typical criteria include symptoms, side effects, disability in activities of daily living, and depression. These are relevant and should continue. Second, other domains, especially those where positive emotion is generated, are relevant to quality of life and to how much the person values life, even if they have no explicit health connection. Positive quality in a nonhealth domain may counteract a force originating in physical distress that might discount the value of life. We have an interest in the individual's qualitative views of such matters. We have heard people make statements like, "I want to live long enough to see my great-grandchild." "I know that God made this happen and I'm glad to bear it." "Relaxation and meditation don't make the pain go away, but they make it bearable." "I want to spend all the time I can with my wife as long as I can talk reasonably." Third, our data show that valuation of life is a useful and measurable concept that distills the positive and negative aspects of quality of life and may serve as an indicator of quality of life in both health-related and non-health-related areas of life. Finally, if we are considering any kind of intervention, whether pharmacological, technological, or nutritional, the clinician must integrate 2 types of knowledge. First is the research that documents the risks, the distresses, and the expense of the treatment. Second is all that can be learned about this individual's circle of family, friends, activities, and his or her personal goals that endure, survive, test religious faith, or get still-relevant benefits from the last of life. Economic models can tell us the probabilities of expense and distress across many individuals but only a close look at a single person can discern the value of that single life to the individual. c:\deslife\qolhe&i3.ms (5/1/98) 11 References Bradburn, N. (1969). The structure of psychological well-being. Chicago: Aldine. Churchill, D.M., Torrance, G.W., Taylor, D.W., Barnes, C.C., Ludwin, D., Shimizu, A., & Smith, E.K.M. (1987). Measurement of quality of life in end-stage renal disease: The time trade-off approach. Clinical and Investigative Medicine. 10. 14-20. Crumbaugh, J.C. (1972). Aging and adjustment: The application of logotherapy and the Purpose-In-Life Test. The Gerontologist. 12.418-420. Fanshel, S., & Bush, J.W. (1970). A health-status index and its applications to health-services outcomes. Operations Research. 18. 1021-1066. Gottschalk, L. (1974). A hope scale applicable to verbal samples. Archives of General Psychiatry. 30. 770-785. Kaplan, R.M. (1982). Human preference measurement for health decisions and the evaluation of long-term care. In R.L. Kane & R.A. Kane (Eds.) Values and long-term care (pp. 157188). Lexington MA: Lexington Books. Kaplan, R.M., & Bush, J.W. (1982). Health-related quality of life measurement for evaluation research and policy analysis. Health Psychology. 1, 61-80. Lawton, M.P. (1983). Environment and other determinants of well-being in older people. The Gerontologist. 23, 349-357. Lawton, M.P. (1991). A multidimensional view of quality of life. In J.E. Birren, J.E. Lubben, J.C. Rowe, & D.E. Deutchman (Eds.) The concept and measurement of quality of life in the frail elderly, (pp. 3-27). New York: Academic Press. Lawton, M.P. (1996). Quality of life and affect in later life. In C. Magai & S. McFadden (Eds.) Handbook of emotion, adult development and aging. Orlando FL: Academic Press. c:\deslife\qolhe&i3.ms (5/1/98) 12 O'Brien, L.A., Siegert, E.A., Guisse, J.A., Maislin, G., LaPaun, K., Evans, L.K., & Kritki, K. (1997). Tube feeding preferences among nursing home residents. Journal of General Internal Medicine. 12, 304-371. Scheier, M.F., & Carver, C.S. (1985). Optimism, coping, and health: Assessment and implications of generalized outcome expectancies. Health Psychology. 4, 219-247. c:\deslife\qolhe&i3.ms (5/1/98) 13 Table 1. Positive Valuation of Life Item No. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. Item I feel hopeful right now Each new day I have much to look forward to My life these days is a useful life. My life is guided by strong religious or ethical beliefs. I have a strong will to live right now. Life has meaning for me. I feel able to accomplish my life goals. My personal beliefs allow me to maintain a hopeful attitude. I intend to make the most of my life. I can think of many ways to get out of a jam. I can think of many ways to get the things in life that are most important to me. 12. Even when others get discouraged, I know I can find a way to solve the problem. 13. I meet the goals that I set for myself. c:\ms\qolhe&i4.ms (7/24/98) 14 Table 2. Years of Desired Lifea No limitations ADL-dependent at home (no pain, cognitively unlimited) ADL-dependent in nursing home (no pain, cognitively unlimited) Confused and ADL-dependent at home (no pain) Confused and ADL-dependent in nursing home (no pain) Mild pain (no ADL or cognitive limitations) Severe and frequent pain (no ADL or cognitive limitations) Severe pain controlled only by narcotics Unconscious, no hope of recovery a The question asked is "How long would you like to live if... (each condition were true)? c:\ms\qolhe&i4.ms (7/24/98) 15 Figure 1. Four Sectors of Quality of Life c:\ms\qolhe&i4.ms (7/24/98) 16