Archiv f(ir Psychiatrie und Nervenkrankheiten Archives of Psychiatry and Neurological Sciences
Arch. Psychiat. Nervenkr. 227, 23--32 (1979)
9 by Springer-Verlag 1979
The Question of Disclosing the Diagnosis to Terminally Ill Patients P. Hartwich Department of Psychiatry (Director: Prof. Dr. reed. W. Klages), Faculty of Medicine, RWTH, Aachen
Summary. The question of disclosing the diagnosis to terminally ill patients was investigated by means of a semi-standardized interview of 56 subjects who had been 'told the truth' about their condition. The effects and interdependence of the factors of age, personality structure (EPI neuroticism scale), duration of knowledge, social contact, and religiousness, on the patient's ability to cope with the information were examined. The process of adjustment was assessed according to the stages proposed by Kt~bler-Ross (1969). Using the statistical model of path analysis, it was possible to evaluate these individual factors and present linearly their interrelationships. These results can offer medical staff the following guidelines: Three factors (a) advanced years, (b) good social contact, and (c) optimally unneurotic personality structure, provide the optimum conditions for a positive adjustment to the disclosure of a diagnosis of fatal illness. If, however, only one or two of these factors are involved, or if they are evident only to a slight degree, then conditions for telling the truth are less positive. On the other hand, in the case of (a) youth, (b) restricted social contact, and (c) a more markedly neurotic person, particular caution is recommended, since the danger of a negative reaction, and indeed even of suicide, must be reckoned with.
Key words: Discussion of disclosing the diagnosis - Terminally ill patients Patients' relative ability to cope - Path analysis.
Zusammenfassung. Die Frage der Aufklfirung wird an 56 bereits aufgeklgrten chronisch unheilbar Kranken mittels semistandardisiertem Interview untersucht. Die Merkmale Lebensalter, Pers6nlichkeitsstruktur (Ncurotizismusscore EPI), Dauer des Wissens um die Erkrankung, soziale Einbindung und Religi6sitiit werden in ihrer Auswirkung und ihrer Interdependenz auf die Send offprint requests to: Priv.-Doz. Dr. reed. Peter Hartwich, Department of Psychiatry, Faculty
of Medicine, RWTH Aachen, Goethestr. 27--29, D-5100 Aachen, Federal Republic of Germany
P. Hartwich intrapsychische Verarbeitung des Wissens um die eigene Erkrankung geprfift. Das Stadium der Verarbeitung wird in Anlehnung an die Stadienabfolge von Kfibler-Ross (1969) eingesch~tzt. Mit dem statistischen Verfahren der Pfadanalyse ist es m6glich, die Gewichtung der einzelnen Merkmale und ihre gegenseitige Beeinflussung linear darzustellen. Ft~r das grztliche Handeln k6nnen aus den methodisch gewonnenen Ergebnissen folgende Richtlinien abgeleitet werden: Die drei Merkmale (a) h6heres Lebensalter, (b) gute soziale Einbindung und (c) m6glichst wenig neurotische Pers6nlichkeitsstruktur stellen in ihrem Zusammenwirken gt~nstige Bedingungen ffir eine positive intrapsychische Verarbeitung dar. Sind nur zwei oder einer dieser Faktoren vorhanden oder sind die Faktoren nur schwach ausgeprfigt, so sind die Bedingungen entsprechend weniger positiv. Bei (a) jugendlichem Alter, (b) mangelndem Sozialkontakt und (c) stfirker neurotischer Pers6nlichkeitsstruktur ist besondere Vorsicht geboten, da hier die Gefahr der negativen Verarbeitung bis hin zum Suicid gegeben ist. Sehliisselwiirter: Aufklfirung fiber die Diagnose - Chronisch unheilbare Patienten - Bedingungen der intrapsychischen V e r a r b e i t u n g - Pfadanalyse.
The medical discussion of the question of 'telling the truth' to incurable patients leads to opposing opinions. According to the investigations of Blatcher and Winkelstein (1968), Brennan (1970), and Oldham (1970), 60--88% of physicians discourage total frankness. To tell the whole truth in the case of a fatal prognosis would be too great a strain for the patient and might lead to serious psychiatric problems, perhaps even to the danger of suicide. Other physicians consider openness to be an important prerequisite of modern therapeutic methods, for these can be fully implemented only if the patients take an active part in decisions about their therapy. Outpatients are particularly prone to withdrawal from drastic cytostatic and radiation treatment. About 65--90% of the patients asked were in favor of being told the truth (Abrams, 1969; Kelley and Friesen, 1950; Oldham, 1970; Samp and Currier, 1957). Perhaps because of the difference in the diagnoses and the various methods used (i.e., questionnaires, interviews, tests), the results given in the pertinent literature are inconclusive. This may also be partially due to the fact that some patients knew their diagnosis, while others did not. To more closely investigate the attitudes of fatally ill patients, we used a semistandardized interview on patients from the Hematology-Oncology department of our Faculty of Medicine who had been aware of their condition for some time. The value of their answers is particularly relevant with regard to personal experience, which is often only superficially reflected in the usual questionnaires. Consequently, we emphasized the use of psychiatric interviews, in the course of which the following questions were asked: Do you consider in your own
The Question of Disclosing the Diagnosis to Terminally Ill Patients
particular case that it was appropriate to tell you the true diagnosis? If you were the physician yourself what would you say to a patient with your illness? The expectation of an unanimous answer to the questions set to the investigated group (N= 56) was not confirmed: 50% of the patients were clearly in favor, 16% were against, and 34% could give no definite answer. Based on the above-mentioned publications and our introductory investigation, it is not possible to give one clear pro or con answer in the discussion of diagnosis from either patients or physicians. Obviously the question can only be approached at a more complex level. Consequently, we will investigate the problem of the patient's intrapsychic reactions and the factors which modify them when he is told of his own incurable disease. From the multitude of modifying factors which can be extracted from the literature and from experience, we have chosen a few which we consider particularly relevant to the study of the reactions of the individual to such information.
1.1. Age Thoughts regarding one's death seem to be more frequent among older people. Munnichs (1968) in a systematic investigation, showed that the aged find the idea of approaching death more acceptable. Similarly, Erlemeyer (1972), Lauter (1976), and Swenson (1961) stress the often positive attitude to the end of life. In this sense, the factor of age seems to play a clear role in the individual's confrontation with death. On the other hand, Cameron et al. (1973), working with over 4000 people, found a high frequency of death consciousness evident not only among the aged, but also among early adolescents. Tismer et al. (1973), who questioned about 10,000 people, found no significant correlation between age and frequency of thoughts of death. Wittkowski (1978) confirms that no definite conclusions can be arrived at based on age alone.
1.2. Personality Structure The question here is whether investigations of particular aspects of personality features can explain the varying ability of individuals to cope with the anticipation of death. Rhudick and Dibner (1961) investigated characteristics which can be measured by the MMPI questionnaire. Neurotic tendencies such as preoccupation with one's own body, depression, affective lability, etc. correlate with thoughts of death. Similarly, Dickstein (1972) found a significant correlation between consciousness of death and the 'manifest anxiety scale' (Taylor, 1953). A positive correlation between emotional lability and fear of death was shown by Moses (1973) and Templer (1972). But all of the authors cited have dealt primarily with fear of death. One question which remains unanswered is whether a person with neurotic tendencies is less able to deal successfully with the psychic problems usually encountered during terminal illness.
1.3. Time Factor The time factor, by which we mean the experience of the approach of death, has been investigated by only a few authors. Lieberman (1966) found feelings of
hopelessness in the case of a short time span, while KiJbler-Ross (1969).speaks of strengthened hope immediately before death. Lieberman and Coplan (1970) reported a change in self-esteem shortly before death, for example, less independence and a tendency to seek confrontation. On the other hand, in the case of a longer time factor, weakness and dependence are predominant. Just as the length of time in which a patient has to come to terms with conflicts plays an important role in psychotherapeutic processes, so, also, the time perspective may influence intrapsychic processes. We propose that patients who have already lived with the knowledge of their incurable illness for a time stand a better chance of accepting their fate than those who have just been informed. This is a question which remains open.
1.4. Social Contact Swenson (1961) and Munnichs (1968) found that people living in a family context think more freely about death than do people living alone. On the other hand, it was shown by Tismer et al. (1973) that divorcees and bachelors more frequently occupy themselves with the question of the end of life. Wittkowski (1978) summarizes the literature on the subject and writes that restricted social contact and an unstable environment lead to more negative thoughts about death and dying. We conclude from this that socially well-integrated people are better able to overcome this problem. It may also be that socially isolated people look forward to the termination of life because they will not be affected by the loss of human contact.
1.5. Religiousness Swenson (1961), in his investigation of 210 people, was able to show that those who have a strong religious belief are capable of a more positive attitude towards death. Martin and Wrightsman (1965) showed that death fear and religiousness correlate negatively. Similar results were reported by Hooper and Spilka (1970); Feifel and Branscomb (1973) and Templer (1972). These seemingly plausible findings have not remained unchallenged. Alexander and Adlerstein (1961) concluded that patients with strong religious belief have no less fear of death than others. Similar findings were made by Feifel (1974) in investigating healthy and seriously ill persons. The same holds for the results published by Templer and Dotson (1970) who could not show any statistical connection between religiousness and fear of death. In addition to the five cited factors, there are a number of further variables which might be discussed, e.g., sex or physical state and thoughts of death (Middleton, 1936; Lester, 1971; Tismer et al., 1973; Cameron, 1968). Some further factors are summarized by Wittkowski (1978) concerning conservatism, tendencies towards suicide, and contentment with life. In the following investigation we have limited ourselves to five of the abovementioned points, since we consider these to be the most important from the clinical and methodological points of view.
The Question of Disclosing the Diagnosis to Terminally Ill Patients
2. Formulation of the Questions O n e might n o w ask what influence the discussed variables can have on the intrapsychic ability to cope with the incurability of the i n d i v i d u a l ' s illness when c o n f r o n t e d with it. This might be examined with a specially selected group of patients, b u t this w o u l d simply be a n o t h e r a d d i t i o n to the presently available literature, a n d we w o u l d still be left with the question of whether the divergent results have any practical consequences when it comes to telling the truth. I n o u r o p i n i o n , the q u e s t i o n of the influence of single variables fails to deal satisfactorily with the complexity of the problem. If one stays on this level the results must r e m a i n divergent a n d d e p e n d e n t o n the particular groups examined. We shall go a step further a n d investigate the p r o b l e m o n a more complex level. This is necessary because the individual is affected by a network of related factors rather t h a n by any single ones or indeed a group of isolated variables. W h a t relationship exists between these factors? H o w are i n t e r d e p e n d e n t links formed with regard to intrapsychic coping? Only when one has established this it will be possible to give a definite answer to the question of whether or not chronic incurable patients should be told a b o u t their diagnosis.
3. Method The 56 investigated subjects were outpatients of the Hematology-Oncology department; there was an equal number of males and females. Involved were 26 cases of acute and chronic leukosis, 18 of carcinoma and sarcoma, 7 of Hodgkin's disease, and 5 of plasmocytoma. In a semi-standardized interview, we explored the following factors: xl--Age: age in years (R = 8 0 - 19 = 61, normal distribution); x2--Personality structure: neuroticism score of EPI (Eysenck's personality inventory, form A); x3--Time factor: knowledge of the illness stated in months; x4--Social contact: living in real contact with relatives versus living in isolation (alternative data); x5---Religiousness: basic religious belief to date, religious versus indifferent (alternative data); x6---Outcome criterion: as outcome criterion we used the current intrapsychic adjustment phases in accordance with the stages of K/Jbler-Ross (1969) (stages one to five). To evaluate the five variables (xl to x5) directly and also their interrelationships with regard to the intrapsychic condition (x6), we used the path analysis model (presentation of mathematical operations see Hartwich and Steinmeyer (1974) dealing with anorexia nervosa). Adopting the stages from Ki~bler-Ross (1969) (one to five) we see a way to operationalize the factors of the intrapsychic condition. She describes the various stages of development in her psychotherapy of approximately 200 incurable patients. Similar phases can frequently be observed in the field of psychotherapy, especially in case of serious loss experience: First stage: Denial. At first most of the patients reacted to the awareness of terminal illness by denying the seriousness of their condition. Second stage: Anger. The denial is followed by anger which can be directed at anyone. During this period handling the patient is often difficult. Third stage: Bargaining. The individual attempts to make some kind of deal or arrangement with fate. Frequently this culminates in a resort to seeking unconventional courses of treatment. Fourth stage: Depression. Sadness and withdrawal in anticipation of the inevitable finality. Fifth stage: Acceptance. Several patients reach a stage when they are neither depressed nor angry about their fate, but rather accept it.
This description of stages is an attempt to classify observations. 'Unfortunately much uncritical and simplistic application has been made of her contributions' (Kastenbaum and Costa, 1977). Not all patients progress linearly through these stages; often there is an oscillation between the phases. Sometimes the demarcation of the phases is difficult, because, as B6nisch and Meyer (1975) describe, cancer patients experience a continuum of knowledge ranging from maximal to minimal denial. After considering these critical opinions, we still used the KfiblerRoss stages because they are the most practical presently available. We estimated the patient's stage after a cautious and tactful interview. In our opinion, such an interview cannot be satisfactorily replaced by questionnaires or tests; further, we consider it unreasonable to subject the patient to questioning on this matter by a number of examiners. By neglecting these criteria of objectivity, we placed the emphasis on years of practical psychiatric and psychotherapeutic experience.
4. Results In the following p a t h - a n a l y s i s m o d e l , a n e t w o r k o f i n t e r r e l a t i o n s h i p s between i n d e p e n d e n t a n d d e p e n d e n t variables will be shown (see Seibel a n d Nygreen, 1972). x l a n d x2 are i n d e p e n d e n t variables. A g e must be seen i n d e p e n d e n t l y o f n e u r o t i c i s m m e a s u r e d by EPI; we are not c o n c e r n e d with neurotic illnesses which m a y be d e p e n d e n t , b u t rather with Eysenck's score, which is defined as one o f the p r i m a r y features o f personality. T h e m e a n o f our subjects' neuroticism score is 9.68, with a s t a n d a r d d e v i a t i o n of 4.37 (form A); this result c o r r e s p o n d s to the n o r m a l g r o u p s (Eggert, 1974) a n d is well below t h a t o f neurotics. O u r original a s s u m p t i o n that the p a t i e n t s ' m a n y physical s y m p t o m s w o u l d 'influence the n e u r o t i c i s m score was not confirmed. These variables ( x l , x2) are followed b y x3, x4, a n d x5, which are defined as d e p e n d e n t on x l , x2 a n d i n d e p e n d e n t o f x6. F o r e x a m p l e , the time factor can be influenced by age, but n o t inversely. Religiousness can be effected b y age a n d m a y influence the o u t c o m e criterion, b u t the reverse m u s t be ruled out. W e h a d to a v o i d patients who, as described by N o r t o n (1968), d e v e l o p e d a sense of religiousness as a result o f their illness. W e also h a d to be w a r y o f patients who, because o f their illness, h a d experienced some social isolation, e.g., divorce. Such measures are necessary to preserve the recursiveness o f the model. T h e variables x l , x2, a n d x3 are m e a s u r e d at the interval scale level (years, m o n t h s , a n d E P I - N score); x4 a n d x5 are registered as alternative categorial data. W i t h x6, o r d i n a l scaling is used. T o arrive at the i n t e r c o r r e l a t i o n m a t r i x o f the six variables, we calculated p r o d u c t - m o m e n t correlations, p o i n t biserial correlations, a n d phi coefficient (Table 1).
Table 1. Intercorrelation matrix
1 2 3 4
+ 0.247 - 0.i 19
- 0.149 - 0.065 + 0.180
+ 0.293 - 0.091 + 0.112
+ 0.451 - 0.397 + 0.395 + 0.226 + 0.250
The Question of Disclosing the Diagnosis to Terminally Ill Patients
.~ rl 2" ".149 : _ . .
: I S
. . . ./i,;
Fig. 1. Path diagram
From the 14 possible mathematical causal intercorrelations, we present in Figure 1 (path diagram) the ten paths with their respective path coefficients, which can be interpreted meaningfully. In addition, the residual paths (R) to x3, x4, x5, and x6 are provided. The residual path of the outcome criterion has the value P6d = 0.776. From the residual path of the outcome criterion, the percentage of the explained variance is calculated as follows: 100 (1--0.7762) = 39.78. Our selection of factors enabled us to explain the outcome criterion of 40% of the total variance. It thereby becomes clear that essential and effective aspects are contained in the discussed factors. Age and neuroticism have a direct effect (P16, P26) on the outcome criterion, i.e., older patients are further advanced in stages of psychic adjustment than younger patients. Furthermore, neuroticism has a negative effect on the progression of the stages. The stronger the neuroticism, the more restricted the progression is. The time factor also directly influences the outcome criterion (P36). The longer someone knows his diagnosis, the better his chances are of adjusting accordingly. Similarly, the effect of social contact is also positive (P46).
Over and above this, age has an indirect effect on the stage via the time factor people often know about their illness longer than their younger counterparts, which has additional positive consequences. Moreover, age (P14) and neuroticism (P24) indirectly effect social connections negatively and thereby charge this intermediary factor negatively with regard to the stage (x6) of adaption. In our model, religiousness has neither a direct nor indirect measurable influence, although advanced age has a positive effect on religiousness.
(P13, P36). Older
5. Discussion The factor of age has given divergent results in the discussed literature (Munnichs, 1968; Erlemeyer, 1972; Swenson, 1961; Cameron et al., 1973; Tismer et al., 1973). Wittkowski (1978) summarized this literature by stating that a definite correspondence could be shown to exist between age and confrontation with death. On the one hand, in connection with other factors, advanced age has a direct positive effect (P16) and also an indirect effect via x3 (time factor P13, P36). On the other hand, advanced age has a negative influence on social ties (P14), since older people are more often isolated; the consequently reduced social contact produces, however, a negative influence on death confrontation. The factor of age can thus be taken to be bipolar, in the sense that it can simultaneously function both positively and negatively in our structure model. This explains the fact that age, taken as a single factor in the cited publications, led to contradictory results. The Eysenck neuroticism score, as an important feature of the personality structure, shows both a direct and indirect influence on the psychic ability to adjust: the stronger neurotic tendencies operate negatively and reduction of social contact caused by personality structure further accelerates this negative tendency. These results can be compared with those of Moses (1973) and Templer (1972), who found a positive correlation between emotional lability and death fear. However, the time factor should not be viewed in isolation, for it cannot be denied that patients who have knowledge of their diagnosis for a longer period adapt better than others; however, this time perspective is in turn dependent on age. Contrary to Swenson (1961), Munnichs (1968), and Tismer et al. (1973), social ties must also be seen in a larger context. Their proposition proves that really good social relationships can make the question of confrontation with death easier. On the basis of our model, it must be added that this factor can, in turn, be strongly influenced by age and personality structure. Religiousness in our model shows no measurable effect on the patient's ability to cope. To this extent, our results agree with those of Feifel (1969, 1974), and Templer and Dotson (1970). Wittkowski (1978) summarized the empirical results as follows: religiousness can correlate both positively and negatively with death fear; the discrepancy is due to two distinct accentuations of reward and punishment in Christian teachings. Perhaps these two aspects have mutually outweighed each other in our model, thereby preventing a definite evaluation of the question of religiousness. Our investigation of this factor was not sufficiently discriminating to enable us to include the expectation of either reward or punishment.
The Question of Disclosing the Diagnosis to Terminally Ill Patients
In conclusion, the following rules can be a p p l i e d to the p r o b l e m o f disclosing the diagnosis to fatally ill patients: A d v a n c e d age, g o o d social contact, a n d an o p t i m a l l y u n n e u r o t i c p e r s o n a l i t y structure are three factors which together lead to a positive a d j u s t m e n t when t r u t h is learned. W h e n the severity o f the p a t i e n t ' s c o n d i t i o n is disclosed, a n d if only one o r two o f these factors are involved, or if they are only evident to a slight degree, then the c o n d i t i o n s for telling the truth are less positive. In the case o f a m o r e e x t r e m e l y neurotic p e r s o n a l i t y structure in a y o u n g e r p e r s o n also suffering f r o m lack o f social contact, p a r t i c u l a r c a u t i o n is r e c o m m e n d e d , since the d a n g e r o f a negative reaction, p e r h a p s even o f suicide, m u s t be r e c k o n e d with. U p o n o b s e r v a t i o n o f the i n t e r d e p e n d e n c e o f these six factors, it can be clearly seen that m o r e p r a c t i c a l conclusions can be r e a c h e d when c o m b i n a t i o n s o f variables in their c o m p l e x i n t e r r e l a t i o n s h i p s are s t u d i e d t h a n when single factors are investigated in isolation.
Acknowledgements. I would like to thank Prof. Dr. U. Essers of the Department of Internal Medicine for her kind assistance in selecting patients from her Hematology-Oncology Department and also Dr. E. M. Steinmeyer of our Department of Psychiatry for his statistical advice.
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Received January 31, 1979