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Factors determining the persistence of phantom pain in the amputee
Journal
of Psychosomatic
Research, Vol. 17, pp. 97 to 108.Prrgamon Press, 1973.Printed in Great Britain
FACTOKS DETERMINING THE PERSISTENCE OF PHANTOM PAIN IN THE AMPUTEE* C.
MURRAY
PARKES
(Received 17 August 1972)
THE PERSISTENCE of pain in a phantom limb after amputation has long been a problem for a minority of amputees and a therapeutic challenge for those who attempt to treat them. Estimates of the prevalence of such pains vary from 0.4 [I] to 50 per cent [2] according to the method of assessment. Most agree, however, that in only a small proportion of cases (cu. 3 per cent, Soloren [3]) is this incapacitating and lasting in duration. A wide variety of physical and psychological treatments have been tried with mixed results. Most investigators now agree that, while there are many treatments which may help to relieve pain in a phantom limb, there are none which are consistently successful and in any limb fitting centre there are likely to be a few patients who persistently complain of unrelieved pain and others who have given up complaining because they have become disillusioned by the inefficacy of therapy. Part of the reason for the multiplicity of therapies is lack of agreement regarding the cause of pain in a phantom limb. In a recent survey of the opinions of 26 medical officers at limb fitting centres carried out by Seelig (unpublished data) physical causes were cited by all but there were only three who did not also mention the fact that psychological factors may play a part. Nine medical officers (35 %) thought that persisting pain in a phantom limb might be prevented by proper preparation or care of the patient at the time of the removal of the limb. These claims prompt us to ask what antecedent factors are associated with persistence of phantom pain and whether any of these might be modified. Despite a very large amount of research into the treatment of phantom limbs very few investigators have turned their attention to this particular problem. An exception is the comparative retrospective study by Morgenstern [4] of three groups of amputees with high (n = 55), moderate (n = 68) and no post-amputation pain (n = 41) in a phantom limb or stump. He found that the group with the most pain were distinguished from those without by age (none under 35 years had severe pain), those with acute osteomyelitis (n = 10) always had severe pain and war injured had higher pain frequency than civilian casualties. Left sided lesions, numerous surgical operations prior to amputation, retirement from work, neuromata, tender stumps, recurrent depression (particularly since amputation), high scores on ‘neuroticism’ (Eysenck Personality Inventory) organic symptoms and psychosomatic symptoms (Cornell Medical Index) were all more frequent in patients with pain. The findings to be reported here come from a prospective study which aimed to elucidate the course of the reaction to amputation of a limb. It was not originally
*From the Unit for the Study of Psychosocial London NW3 5BA.
Transitions,
97
The Tavistock Centre, Belsize Lane,
98
C. MURRAYPARKES
planned as an investigation of painful phantoms but it became possible, in the course of the study to make a comparison between patients with and without pain which in some respects confirms and in other respects expands Morgenstern’s findings and which leads us to believe that it may be possible, at the time of amputation, to predict who is likely to have persisting pain in a phantom limb. If this is the case we have the opportunity to focus helping resources on this ‘high risk’ group in the hope of preventing such complications from arising. Method
Patients were selected for inclusion in the study from among men and women attending the Department of Health and Social Security’s Limb Fitting Centre at Roehampton for the first time. Criteria for inclusion in the study were: 1. Under age 70; 2. Amputation of arm or leg; 3. No cancer or other disease likely to produce, after amputation, an increasing disability, greater than that produced by the amputation or the disease or injury which brought it about (this did not prevent many patients with signs of persisting disease from being included); 4. Able to understand and speak English; 5. Living within London postal area or North West London. Using these criteria 53 patients were asked to participate in the study. Three refused, 3 died in the course of the year and one other was excluded after she had a stroke. This left 46, 37 men and 9 women who were interviewed on at least two occasions. The initial interview took place 34 weeks weeks after amputation by which time most of the patients had been discharged home from hospital. It was carried out by the investigator who visited the patient at home or in hospital and asked a series of questions about the events leading up to and following the amputation and the respondent’s reactions to them. This included check lists of emotional and physical symptoms which have been found to be affected by other forms of stress (notably the stress of bereavement) as well as questions about a variety of demographic and social variables. The second interview was carried out 13 months after amputation and, as well as ascertaining the course of events over the first year of amputation, the investigator made systematic assessments of the level of psychological, social, occupational and physical health status achieved by the patient at that time. These included an evaluation of the severity of any persisting pain in the phantom limb, rated as “None, Mild, Moderate or Severe”, and of its nature as “Continuous or Intermittent”. In addition a questionnaire was read out and replies recorded to 83 forced-choice questions covering a range of factors some of which were indicators of mental health or psycho-social adjustment and others enabling certain personality traits to be measured. These have been described more fully elsewhere [5, 61. For the purposes of this paper three scores are of particular interest; a “Depression” score derived by adding together scores from 24 questions on general level of contentment or sadness, an “External Anxiety” (or “Worry”) Score derived from 14 questions about commonly occurring sources of anxiety (these included money, children, and social relationships and self assessments of anxiety, self-consciousness and worry), 11 questions on a personality trait “Compulsive Self-reliance”. This included questions from the “Rigidity” score of the Midtown Manhattan Study [7l but seemed to reflect more closely the presence of a strict self control with a tendency to mistrust others and to view the world in ‘black and white’ terms. The meaning of the score can best be illustrated by citing some typical questions from it: “Tell me whether you would or would not give a young person this advice?-‘Once your mind is made up don’t let anything change it’, ‘There are two kinds of people in the world, the weak and the strong’, ‘One drink is one too many’, ‘Never show your feelings to others’, Always be on your guard with people’.” In choosing these variables from among the larger number available for study we relied partly on our review of the literature and partly on overall impressions derived from the qualitative aspects of the study. Information was obtained independently on physical status, the amputation stump, the prosthesis and the level of functioning from the medical officers at the Limb Fitting Centre at Roehampton who made their own examination of 38 of the amputees 12-18 months after amputation. RESULTS Only one patient denied any experience of a phantom limb phenomenon throughout the first three weeks after operation and 85% (39/46) experienced some pain or discomfort in the phantom limb during this time.
Factors determining
the persistence of phantom pain in the amputee
99
A yea.r later 61% (28/46) still had some pain although this was only rated as severe in 7 (15 %) and as moderate in intensity in another 7 (15 %). In the remaining 14 patients pain was rated as mild (30 %). The pains were usually intermittent in character and varied in quality from spasms of sharp pain shooting up or down the limb to painful sensations of pressure or cramp in the extremities. About half of those who had moderate or severe pain likened it to the pain which they had experienced before operation. Such pains were usually most troublesome at night and the patient was often kept awake by pain (7/14 of those with moderate-severe pain). One patient described how he dreads going to bed-“When the pain comes on I’d as soon be dead. It’s like something trying to escape out of the end of the stump, it shoots down the end of your leg and feels as if someone’s trying to pull your leg off... like an electric shock . . . no warning, Woof, it starts up”. He would get out of bed and walk about the room at 3.00 a.m. “I could really scream at times with the pain. . . . It feels as if someone’s sawing it off, very, very painfulAxactly the same sensation as when I was first taken ill”. Most described their pain in less extreme terms as “twinges” or “throbbing”. Pain might be aggravated by nasty weather, or warm weather, by walking in the prosthesis or by taking it off. Several mentioned emotional factors as precipitating or relieving the pain and, apart from analgesics, distraction was the principal method used to alleviate it. One patient, who reported severe pain keeping him awake one night a week, remarked, “When I don’t think about it I don’t seem to be in any pain”. There were none who regarded the pain as a major cause of any persisting disablement which they now suffered and it was notable that only 36% (8/22) of those with pain who were examined by a medical officer reported the pain to him. DETERMINANTS
OF PAIN IN PHANTOM
LIMB AT 13 MONTHS
On the assumption that although these patients were not disabled by pain those with persisting pain in a phantom limb were more likely to go on to have ‘pain problems’ we analysed the antecedent and concurrent factors which were associated with persisting pain. Demographic
factors
Age, sex and socio-economic status were not significantly different in patients with persisting phantom pain as compared with those without. There was, however, a tendency (which did not quite reach significance) for patients with persisting moderate or severe pain to come from households in which there were two or more people living at home. The painful phantom cannot, therefore, be attributed to social isolation. Physical
illness
Eleven indices of physical illness were examined. There was no evidence that persisting pain in a phantom limb was associated with amputations which had followed physical illness as opposed to accidents, proximal as opposed to distal operations, or that it was associated with the presence or duration of severe preoperative pain, deformity or disturbance of function. There was, however, a significant association indicating that persisting pain in a painful phantom limb was more likely to follow an illness which had lasted for more than a year before amputation and an illness which persisted after operation to produce a threat to life or to the remaining limb. There TABLE 1 .-PERSISTING
PHANTOM PAIN AT 13 MONTHS AND DEMOGRAPHIC FACTORS None
ige:
lo-49 50-59 60-70 Sex: Male Female Socio-economic status : I-III(N) non-manual III (M)-V manual Number at home: o-1 2+
Pain in phantom limb Mild Mod.-Severe
p
6 &) 6 (33 2)
4 &Y) 2 (142)
n.s.
6 (33 %) I3 (72%) 5 (28 %)
8 (57 %) 11 (79%) 3 (21%)
ns.
6 (33%) 12 (67 %)
4 (29 %) 10 (71%)
7 (41%) 10 (59%)
10 (71%) 4 (29 %)
5 (36%) 9 (64%) >
IL’-
3 (23 %)
10 (77 %)
Percentage scores corrected for missing data in a few instances.
I”.
C. MURRAYPARKES
100 TABLE
2.--PERSISTING
PHANTOM
PAIN AT
13
MONTHS AND
Accident Left-sided amputation Severe pain > 1 week Gross deformity > 1 week Dysfunction > 1 week Ill 1 year before amputation Physical illness threatens life or limb 4 -I- surgical operations 2 -t previous physical illness
COURSE OF ILLNESS
Pain in phantom limb Mild Mod-Severe.
None n Proximal amputation Intermediate Distal amputation
TYPE AND
8 :A%) 1 (6%) 9 (50 %)
4 f24y%) 3 (21%) 7 (50%)
5 (28%) 5 (28 %I 12 (67%) 5 (28 %) 12 (67%) 2 (11%)
1 (7%) 7 (50 %I 7 (50%) 5 (36%) 8 (62 %) 6 (46 %) 4 (29 %) 4 (29 %) 4 (33 %)
1 (6%) 3 (18%) 2 (12%)
7 &p/) 5 (362) 2 (14%) > 3 (21%) 8 (57 %) 10 (71%) 1 (7%) 10 (71%) 7 (50%) 6 (43 %) 5 (39%) 6 (46 %)
p
n.s. n.s. n.s. n.s. ns. n.s. < 0.05 < 0.05 n.s. KS.
Percentage scores corrected for missing data in a few cases.
were also distinct trends, which did not reach significance, for painful phantoms to be associated with left sided lesions, multiple surgical operations and to many physical illnesses in the past. Preparation for operation Five indices of “nrenaration
for operation” were studied. These included “awareness of intention to operate at time of ahmission”, “information given before operation”, “acceptance of information given”, “preoperative fear” and “attitude to operation”. None was associated with intensity of pain in phantom 13 months after amputation. Postoperative symptoms in stump and limb
Ten indices of stump or phantom limb symptoms during the first 3-4 weeks after amputation were studied and six of them were found to be significantly associated with pain in the phantom limb a year later (Table 3). These were “Severity of pain in stump whilst in hospital”, “ Dissatisfaction with stump at home”, “Severity of stump pain at first interview”, “Severity of pain in phantom in hospital”, “Severity of pain in phantom at home ” , “Severity of pain in phantom at first interview”. Not associated with persistence of phantom pain were “Intensity of phantom limb phenomenon in immediate postoperative period”, “Severity of pain in phantom during immediate postoperative period”, “Presence of phantom limb in hospital”, and “Intensity of phantom limb at interview”. Thus it seems that both stump pain and phantom pain during the first three weeks after operation are likely to be associated with phantom pain later.
TABLE
3.-PERSISTING
FAIN IN PHANTOM
LIMB AT 13 MONTHS
AND POSTOPERATIVE
SYMPTOMS
IN STUMP
OR LIMB
None n
Marked phantom limb immediate post op. Mod.-severe pain in phantom immediate post op. Some stump pain in hospital Some pain in phantom in hospital Marked phantom limb in hospital Some pain in phantom at home Dissatisfaction with stump at home Marked phantom limb at 3 week interview Some pain in stump at 3 week interview Marked pain in phantom at 3 week interview
Pain in phantom limb at 13/12 Mild Mod.-Severe
12&Q 8 6 9 7 8 7 5
(47 %) (38%) (50 %) (39 %) (44%) (39%) (28 %I
11
&%)
10 (71 %f 12 (92%) 12 (92%) 4 (31%) 12 (86%) 9 (64%) 4 (29 %) 5 (36%) 1 (7%)
9 :649%)
p
n.s. n.s.
;A ;;;:;
< 0.01
11(85<) 7 (50%) 13 (93%) 12 (86%) 9 (64%) 11 (79%) 5 (36%)
< 0.02 n.s. < 0.01 i 0.05 n.s. < 0.05 i 0.05
Factors determining the persistence of phantom pain in the amputee
101
Thirteen months after amputation there were still 8 patients whom medical officers reported as having “stump complications”. These included tender horny points, vascular scars, pressure abrasions, etc. Six of these 8 had some pain in the stump and all of them had pain in their phantom limbs. Despite this there were no cases in which either the investigator or the medical officer felt able to recognize a clear cause for phantom pain. “Personality” and “Pain-Sensitivity” of the patient At the initial interview the interviewer questioned each patient carefully about his view of his own sensitivity to pain, his like or dislike of changes in his life, and his view of himself as “perfectionist” or “slapdash”. With the patient’s assistance he made a mark on each of three 10 c.m. analogue scales whose extremes were labelled “Extremely insensitive to pain-Extremely sensitive to pain”, “Extremely adaptable-Extremely rigid” and “Absolute perfectionist-Completely slapdash”. In addition the health questionnaire which was completed at the final interview enabled two scores to be obtained which are thought to reflect relatively unchanging pesonality attributes, both being unaffected by the stress of bereavement as judged in a controlled study of U.S. widows and widowers [6]. These were “Compulsive Self-reliance” and “External Anxiety (or ‘Worry’)“.
TABLE 4.-COBRELAT~ON OF PERSISTINGPAIN IN PHANTOMLIMBAT 13 MONTHSWITH FIVEPERSONALITYINDICES Correlation with phantom pain Pain insensitive/Sensitive Adaptable/Rigid Perf&tionist/.?lapdash Compulsive self-reliance External anxiety (worry)
or20 0.36 -0.13 0.35 0.19
P n.s. < 0.02 n.s. < 0.02 n.s.
As will be seen from Table 4 two of these dimensions correlated significantly with persisting pain in the phantom limb, “Rigidity” and “Compulsive Self-reliance”. Among the 11 items contributing to the “Compulsive Self-reliance” score the three which best distinguished patients with persisting pain from those without were-“There are two kinds of people in the world, the weak and the strong”, “Once your mind is made up, don’t let anything change it” and “Always be on your guard with people”. Inspection of the data reveals that 8 out of the 14 who had moderate or severe phantom pain had scored over 2.5 on “Pain sensitivity”, whereas only 10 out of 30 of those with little or no pain reported this degree of “Pain sensitivity”, but these figures do not reach statistical significance. Reaction to amputation Twenty-four questions reflected the emotional reaction to the amputation and its aftermath. Only one of these was significantly related to the persistence of nain in the phantom limb. This was the interviewer’s assessment of a sense of insecurity rated as none, mild, moderate, marked or very marked at the time of the first interview. The data showed that half of the 14 whose ohantom pain was rated as moderate-severe a year after amputation were “markedly insecure” at the time of the first interview (chi-squared 4.31, p < 0.05 using Yates’ correction). This is not surprising in the light of the finding reported above that most of these patients were complaining of pain in their stump at this early stage. Occuoational adjustment A striking finding was the fact that 15 out of 17 respondents who were unemployed a year after amputation had pain in a phantom limb (Table 5). This desnite the fact that no oatient blamed his pain for his unemployment. (As stated above most pains were mild or intermittent in character and they often only occurred at night. It was unlikely, therefore, that they would constitute an obstacle to employment). Equally striking was the discovery that few of these patients had exoected to remain unemployed and that assessments of poor work prospects and expected inability to cope with life as an amputee at the time of the first interview were not oredictive of vain in the vhantom a vear
102
C. MURRAYPARKES TABLE~-PERSISTING PAININ PHANTOMLIMBAT 13 MONTHS MENT AT 13 MONTHS
X EMPLOY-
Pain in phantom at 13 months None Mild Mod.-Severe
8
n Employed (inc. housewife) Unemployed (inc. retired)
16 :89%) 2(ll%)
6 (&) 8 (572)
8.63. 2 d.f. p-c 0.02.
Chi-squared Other outcome
7 &o/) 7 (502)
measures
Although the presence or absence of a painful phantom limb was taken into account in making assessments of overall outcome it seemed that other factors were more important determinants and in the final analysis, the intensity of phantom pain only correlated r = 0.09 with the interviewer’s five-point outcome measure. Nine of the 14 patients were rated as having had a ‘satisfactory’ outcome despite the persistence of occasional moderate to severe phantom pain. Likewise there is virtually no association (v = 0.09) between the interviewer’s assessment of psychological adjustment and phantom pain at the final interview or between “Depression Score” and phantom pain (r = O-13). PREDICTION
OF PERSISTING
PAIN
If we award a score of one point for each of the four best predictors of persisting pain we can obtain a simple ‘predictive score’. 1. Some pain in phantom or stump 3 weeks after amputation. 2. “Compulsive Self-reliance” score of 4+. 3. Amputation follows illness of > 1 year duration. 4. Unemployed at end of year. This score correlates r = 0.52 with persisting pain in the phantom limb and a score of 2-t is associated with phantom limb pain in 19 out of 22 cases (see Table 6). To make this a truly ‘predictive’ score it would be necessary to omit the “unemployment” item which can only be scored at the end of a year. This can be done without greatly reducing predictive power. TABLE 6.-PERSISTING MONTHS
PAIN IN PHANTOM LIMB AT X “PREDICTIVE SCORE"
13
Pain in phantom at 13 months “Predictive Score”
None
;f
6 & %)
1 2+
Mild
Mod.-severe
7 (50%) Chi-squared
I2 (86%)
16.73. 4 d.f. p ~0.01.
DISCUSSION
There is no reason to believe that the sample of amputees reported in this study are not typical of London amputees under age 70. The exclusion of the severely ill group introduces a slight bias but in doing so removes a group whose reaction to amputation might well have been masked by their reaction to the major physical symptoms which remained. Although the phantom pains reported by these patients were less disabling and less continuous than those which are complained of by the small minority who seek treatment for chronic pain, they resembled such pains in most other respects. Thus
Factors determining the persistence of phantom pain in the amputee
103
Riddoch [2] has described the paroxysms of cutting, darting or tearing pain which may occur spontaneously or in response to stump pressure or temperature changes and which originate at the same time as the phantom and may fill the whole limb or be focussed in the site of the previous lesion. All of these characteristics were found in the current study and reassure us that what we are studying is a less troublesome form of the same phenomenon. The differences, however, are also worth noting; not least the fact that many of our patients did not complain to a doctor about the pain. They seemed to regard it as an expectable consequence of amputation which would have to be tolerated and even those who asked for analgesic or sedative drugs from their G.P. did not always mention the pain to the medical officer at the Limb Fitting Centre. This leads one to suspect that the prevalence of persisting phantom limb pain may be very much larger than the statistics of limb fitting centres reveal. The findings give good grounds for hope that the persistence of pain in a phantom limb can be predicted at the time of initial attendance at a limb fitting centre. The history of a long illness with several surgical operations prior to amputation and persisting pathology afterwards, evidence of a rigid, compulsively self-reliant personality, the presence of pain in the phantom limb or stump and accompanying feelings of insecurity, combine to present a reasonably clear picture of the “painprone patient”. If, in addition, he is unable to obtain a job within a year of amputation then there is a high chance that he will be found to have persisting pain in a phantom limb. Further studies will be needed to confirm the utility of the ‘predictive score’ in other samples of amputees. These findings agree with those of Morgenstern [4]. In both studies pain was associated with left sided lesions, a relatively large number of previous surgical operations, tender stumps and retirement from work. The association between stump pain and phantom pain is mentioned by Riddoch; in the present study the association was strong and a quarter of those with phantom pain had some observable abnormality of the stump. The finding that emotional disturbance was not significantly more frequent in the “high pain” group before, during or after the postoperative period seems to indicate that phantom pains are not a channel for the “overspill” of emotional disturbance. The possibility remains that the pain may sometimes be an “alternative” to emotional disturbance perhaps representing a “depressive equivalent” [8]. That psychological factors do play a part in determining the persistence of pain is strongly suggested by the finding of high scores on “Rigidity” and “Compulsive Self-reliance” among the patients with pain. TO discover how this influence may come about we can look more closely at two case examples, one an example of a patient with a painful phantom whose overall outcome was rated as “very good”, the other a patient with pain whose outcome was only “fair”. Arthur M., a deeply religious man, aged 64, had “lived a life of personal service”. Orphaned at 14 he had to abandon his plan to become a doctor and instead served in the R.A.M.C. and later “for family reasons” became a bank clerk. He lived with his brother and spent much of his spare time in visiting the sick and in religious activities. He married at 44, a happy union to a woman who, like himself, was a devout Roman Catholic. They had no children. At about the same age Mr. M. developed symptoms of heart disease.
104
C. MURRAY
PARKES
In 1962 he retired from work because of the progression of cardiac ischaemia. He continued to live a sociable life at home and to devote much of his time to hospital visiting. In April 1969 he was admitted to hospital after the sudden onset of ischaemic symptoms in his left leg. He did not take this very seriously at first and approached his first operation, embolectomy, with considerable optimism. The operation was not a success and the following day he was told that through-knee amputation was necessary-“You’ll either lose your leg or your life”, said the surgeon. “My little bubble of hope had been pricked,” he said, but he accepted the prospect with apparent equanimity and after the operation, “I had the feeling that I could kick the world about”. He was the hero of the ward: “They told me they were going to write me up as their prize patient”. It was only when he was fitted with a pylon a week later that he began to realize the extent of his disability. At about the same time he was told he had diabetes. He wept bitterly-“The helplessness, being dependent on people . . . the humiliation”. Pains in the phantom and stump started 2-3 days after the operation and reached a peak during the second and third weeks. The leg felt “as if it had grown in length and was hanging over the end of the bed”. At first the toes started itching, “Then I got an iron grip round the ankle and a burning in the centre of the foot”. These symptoms were worse on warm days (when the foot felt “frozen”). He also experienced a moderate ache in the stump itself which was worse if he thought about it. Despite moderate depression and tearful episodes he remained a model and sociable patient. He was discharged home a month after the amputation and was first interviewed for the study 5 days later. At this time he said his spirits were improving although he found the forced inactivity frustrating. The pains in stump and phantom were much improved but the healing of the wound had been delayed by local infection. He described himself as warm-hearted, demonstrative and outgoing, a meticulous perfectionist who disliked change and had very high standards. He saw pain as “purifying”, a form of suffering which must be accepted but this did not prevent him from taking DF 118 for it. He denied any feeling of bitterness or resentment of what had happened and unlike most amputees, said that he had had no difficulty in believing that he had lost his leg. Mr. M. anticipated no difficulty in coping with life as an amputee and was looking forward to resuming his hospital visiting with the added experience which he had now gained. But his subsequent progress was very much slower than he had anticipated. He lived on a steep hill and it was 10 months before he began to venture out. Thirteen months after amputation he had resumed attendance at church meetings nearby but was only able to manage occasional hospital visits. Nevertheless he was cheerful and active about the house, was visited by his friends and he continued to maintain his ‘heroic ‘image. He found his prosthesis comfortable but needed a stick to give added security and two when he went out. “Nasty pains” in the phantom continued to be a problem several times weekly. “It feels as if the toes are bunched up very much,” he said. He said he “would not like to complain” about it to the medical officer at the Limb Fitting Centre. He had determinedly stopped taking DF 118 for the pain 2 months previously and said that it was his religion that had helped him to accept the pain. To all appearances he was making a very good adjustment but he was very much troubled by restlessness at night and his wife, who had herself suffered from hyperthyroidism, had taken to sleeping in the living room. Mr. M.‘s diabetes and cardiac condition were causing no trouble and the questionnaire scores gave no indication of depression, anxiety or any tendency to worry. He had a score of 5 on “Compulsive Self-reliance” reflected in his agreement with such statements as, “Once your mind is made up, don’t let anything change it”, “One drink is one too many” and “There are two kinds of people in the world, the weak and the strong”. Clearly he saw himself as one of “the strong” but this selfimage was difficult to maintain in the face of his incapacity and although he continued to speak of his “duty to give service to others” he was now largely reliant on others to visit and “give service” to him. He admitted to feeling frustrated by these restrictions but added, characteristically, “I’m not going to sit down and cry”. Robert P., a fishmonger, was 69 when he lost his right leg after 15 years of intermittent claudication culminating in 9 weeks of severe pain in the foot. A rigid, shy man, with few friends, he lived with his wife and two unmarried wealthy children in a pleasant middle class home in north London. Although he had officially retired from work 5 years previously and had no need of the money, he had continued to work 3-4 hours a day in a fishmonger’s shop until the latter part of 1968. During the first half of 1969 he underwent, successively, a bilateral sympathectomy, arterial graft, prostatectomy, nephrectomy (due to damage to the ureter sustained during the sympathectomy operation), and a mid-thigh amputation of the right leg. By this time, “I was suffering so bad I wasn’t surprised 7. . I think in the last few days I was looking forward to it”.
Factors determining the persistence of phantom pain in the amputee
105
After the operation he woke up feeling “fine”. He was quite cheerful and although he had bad pains in his phantom and stump he felt able to disregard these. Two days later, “I began to realize what it meant . . . Would I walk again? Will I get better ?’ He became “very depressed” and this was, if anything, worse after he returned home 3 weeks later. When seen by the investigator a few weeks after that he was crying a lot and ashamed of being a burden to his family. “You don’t realize until you want to use your leg. You’ve got to ask your wife for everything. I sit so many hours and I can’t read a book. So I sit a lot of hours thinking about it . . . I don’t like people to see me like this.” His stump was still sore, tender and discharging slightly and he had a distinct phantom limb with “aches and pain and a sore place on the heel”. He had fallen once and was very frightened of falling over again and “bursting the wound open”. His ‘good’ leg was very weak and he was worried by the “burning pain” which came on when he tried to walk on it. had my life”. At night he Asked if he felt bitter or resentful, he replied, “I can’t grumble-I’ve “lay awake with depression” and instead of being cheered, as are most amputees, by the sight of amputees at the Limb Fitting Centre who are coping well with their prostheses, he saw only “people who’ve had legs for a long time and still not using them properly-you realize it’s difficult”. He had no plans for the future and expected life to be “very difficult”. When reinterviewed a year later he started by reassuring the investigator that he was feeling “fine”. “I’ve got everything I could want-a nice house, wonderful wife and wonderful children”. But he soon became tearful when he spoke of the restricted life he was living. His walking was now restricted by claudication in his good leg and he was also getting pain at night in the foot which made him fear that he would soon have to lose that leg. He tended to become tearful each morning: “I see my leg in the corner and I think-it’s come to this”. Lacking any personal interests he felt ‘caged up’ at home and said, “It’s the worse thing in the world, to retire. I think it’s misery.” Although the prosthesis was fitting well and he had no pain or discomfort in the stump he was still having nocturnal attacks of pain in the phantom toes and felt that this had changed very little since the first interview. “At times it gets so bad you can hardly bear it.” Attacks of pain lasted up to two hours but he did not mention them to the medical officer who examined him at the Limb Fitting Centre. His questionnaire scores reflected a worried man with moderate depression (“You sometimes can’t help wondering if anything is worth while any more”) but he also claimed that he can be “very happy” and that the loving care of his devoted family made up for a lot. His score of 5 on “Compulsive Self-reliance” reflected agreement with such statements as “Whatever you do must be done perfectly”, “Always be on your guard with people” and “Never show your feelings to others”. The picture which emerged was of a frustrated old man who tried, but did not succeed, in hiding his feelings of depression and his anxieties about the deterioration in his health. The succouring care which he received from his wife and family only served to make him feel more helpless but he would have been ungrateful to them and ashamed of himself if he had complained. His overall outcome was rated as “fair”. CONCLUSION
These two men are typical of the patients who had moderate to severe pain in a phantom limb 13 months after amputation and they each have most of the characteristics which our statistical analysis found most commonly in this group. Because the “stiff upper lip” is an attribute of the rigid, compulsively self-reliant personality it is not surprising that so many of these patients made a ‘good’ adjustment to amputation and appeared to be functioning well a year later. Our findings suggest, however, that this ‘good outcome’ is more apparent than real and that the painful phantom may be the tip of an iceberg of discontent. The existence of an association between personality type and phantom pain does not, of course, prove causation. But it is possible to suggest an explanatory hypothesis which, even if it is not itself directly testable, could lead to a form of preventive intervention whose efficacy could be tested. What are the personality features which are associated with persistence of phantom pain? These patients were placed at the rigid end of an “adaptable/rigid” dimension and this implies that they dislike and resist change. Amputation of a limb gives rise
106
C. MURRAYPARKES
to a host of changes in a person’s life, many of them major. One might well expect that people who are unadaptable would find this a particularly difficult time. Yet patients with pain did not report any more overt emotional disturbance at the time of the operation than those without pain; why should this be? The answer may well be found in another personality characteristic shown by patients in this group-Compulsive Self-reliance. The term “compulsive” has been used to designate this type of person because of the extent to which he tries to continue relying on himself even when, because of circumstances, he greatly needs to rely on others. To such a person any reliance on others is taken to be a sign of weakness, a loss of control over his own life which seems to threaten his very survival. (Reasons for this lack of ‘basic trust’ can be assumed to lie in his past, perhaps in childhood experience, but we have no data to confirm or contradict this hypothesis). To the compulsively self-reliant amputee, particularly if his disablement is protracted and he is unemployed, the experience of being helpless and of needing to rely on others, however loving they may be, is a galling and humiliating experience; anyone else might become deeply depressed or cry his eyes out. But for him to engage in such behaviour would only serve to confirm his feelings of helplessness. In order to preserve an image of himself as a strong, controlling person the compulsively self-reliant man must hide his grief and pretend to himself and to others that all is well. “Never show your feelings to others” is his watchword and, even if the feelings do show through from time to time, they are quickly suppressed or repressed. If he is successful in this he may even achieve an exalted status as a ‘hero’ which will help to restore his injured self-esteem. The mechanism whereby repressed emotions and avoided patterns of thought and action can produce or prolong phantom pain is not known. But the locus of such pains may, for instance, be determined by suggestion. Thus the woman whose husband has died from coronary disease may well misinterpret the palpitations and presternal discomfort which are common features of normal grief as evidence that she too has heart disease. The anxiety and focussing of attention on the symptoms seem to provide a psycho-physiological basis upon which a severe hypochondriacal illness can be built up [9]. Any amputee, whose stump and phantom limb are obvious foci of anxious attention, would seem similarly vulnerable to the possibility of symptom elaborations. Add to this postoperative pain, which may well be organic, and a prolonged period of unemployment with little to do but sit and think about oneself and one’s disability and the stage is set for the development of pain problems. In these circumstances it would not be surprising were quite a minor tendency toward rigidity or compulsive self-reliance to tip the balance. That only a small proportion of those with pain problems a year after amputation seek treatment for them at a limb fitting centre may reflect the fact that the compulsively self-reliant patient does not readily seek for help. He may also feel that it is better not to aggravate the pain still further by “making an issue” of it (a view that is also often held by the medical officer). Further research is needed to discover why some patients do complain of the pain. If our explanatory hypotheses have validity they carry important implications for preventive intervention. The rigid or compulsively self-reliant patient is not hard to spot and we need not fall into the trap of supposing that because these patients
Factors determining the persistence of phantom pain in the amputee
107
proudly avoid asking for special help they do not need it. A programme aimed at identifying the pain-prone patient and giving him an opportunity to develop a trusting relationship with a caseworker in which it will become ‘safe’ for him to express his very real feelings of grief, anger and helplessness might well reduce the need for repression and consequently prevent the persistence of painful phantom limbs. This would be strengthened were simultaneous casework to be given to the patient’s family to educate them in the need to allow the amputee to remain as autonomous as his physical condition permits and to preserve his precarious self-esteem by finding new roles for him instead of overprotecting or ‘mothering’ him. Equally they may need to learn how to avoid conniving with the patient by fostering a bogus self-reliance and how to permit him to express his distress and anxiety without ‘losing face’. Such an approach, since it would not be focussed on the limb at all, would be unlikely to foster symptom elaboration. If this programme were to prove successful it would carry implications for the medical and nursing care of the amputee. It may well be that ‘heroic’ or excessively self-reliant attitudes are encouraged in some patients by the culture of the surgical ward. For, if it is healthier for a patient to ‘break down’ and to express the feelings of grief and helplessness which normally arise after any mutilating operation or illness, then we may need to provide a setting in which that can happen. Sympathetic understanding in conditions of privacy may need to be provided for patients who must face the prospect of major surgery and opportunities given them to withdraw from the bonhomie of public life in a hospital ward during part of the postoperative period. The repression of emotion has long been regarded as a potent cause of psychiatric symptoms. It comes as no surprise to find that it may also be a cause of troublesome somatic pain with or without the coexistence of an organic lesion.
Acknowledgements-Thanks are due to the staff of the Limb Fitting Centre, Roehampton for their aid and advice and to the amputees who took part in the study. The work was carried out with the assistance of a grant from the Department of Health and Social Security.
SUMMARY
Forty-six amputees were interviewed one month and thirteen months after amputation of an arm or leg. Complaints of persisting pain in a phantom limb were found to be significantly correlated with rigid and/or compulsively self-reliant personality, many people at home, illness of over 1 year’s duration prior to amputation, persisting illness with threat to life or limb after amputation, pain in stump during first month after operation, pain in phantom limb during the same period, stump complications persisting at 13 months, and unemployment or retirement at 13 months after amputation. It is concluded that it may be possible to predict, at the time of amputation, which patients are likely to have problems with persisting pain in a phantom limb. Two illustrative case examples are described and the possible aetiological and therapeutic implications of the findings are discussed.
108
C. MURRAY PARKES REFERENCES
1. KOLB L. C. Psychology of amputee: phantom phenomena, body image and pain. CoNect. Papers, Mayo Clin. 44, 586 (1952). 2. RIDDOCH R. G. Phantom limbs and body shape. Brain 64, 197 (1941). 3. SOLORENK. A. The phantom phenomenon in Finnish war veterans. Acta Orthop. Stand. Suppl. 3, 119 (1962). 4. MORGENSTERNF. S. Chronic Pain. In Modern Trends in Psychosomatic Medicine-2. (Edited by HILL 0. W.), Butterworth, London (1970). 5. PARKESC. M. and BROWN R. J. Health after Bereavement. Psychosom. Med., in press. 6. PARKESC. M., GLICK I. and WEISSR. Determinants of Grief, in preparation. 7. SROLEL. Mental Health in the MetroDolis. McGraw-Hill. New York (1962). 8. DEUTSCHF. and MURPHY W. F. The Clinical Interview. vol. 1. Int. Univ. Press, New York (1955). 9. PARKES C. M. Bereavement and mental illness-l. A clinical study of the grief of bereaved psychiatric patients. Br. J. med. Psychol. 38, 1 (1965).
of Psychosomatic
Research, Vol. 17, pp. 97 to 108.Prrgamon Press, 1973.Printed in Great Britain
FACTOKS DETERMINING THE PERSISTENCE OF PHANTOM PAIN IN THE AMPUTEE* C.
MURRAY
PARKES
(Received 17 August 1972)
THE PERSISTENCE of pain in a phantom limb after amputation has long been a problem for a minority of amputees and a therapeutic challenge for those who attempt to treat them. Estimates of the prevalence of such pains vary from 0.4 [I] to 50 per cent [2] according to the method of assessment. Most agree, however, that in only a small proportion of cases (cu. 3 per cent, Soloren [3]) is this incapacitating and lasting in duration. A wide variety of physical and psychological treatments have been tried with mixed results. Most investigators now agree that, while there are many treatments which may help to relieve pain in a phantom limb, there are none which are consistently successful and in any limb fitting centre there are likely to be a few patients who persistently complain of unrelieved pain and others who have given up complaining because they have become disillusioned by the inefficacy of therapy. Part of the reason for the multiplicity of therapies is lack of agreement regarding the cause of pain in a phantom limb. In a recent survey of the opinions of 26 medical officers at limb fitting centres carried out by Seelig (unpublished data) physical causes were cited by all but there were only three who did not also mention the fact that psychological factors may play a part. Nine medical officers (35 %) thought that persisting pain in a phantom limb might be prevented by proper preparation or care of the patient at the time of the removal of the limb. These claims prompt us to ask what antecedent factors are associated with persistence of phantom pain and whether any of these might be modified. Despite a very large amount of research into the treatment of phantom limbs very few investigators have turned their attention to this particular problem. An exception is the comparative retrospective study by Morgenstern [4] of three groups of amputees with high (n = 55), moderate (n = 68) and no post-amputation pain (n = 41) in a phantom limb or stump. He found that the group with the most pain were distinguished from those without by age (none under 35 years had severe pain), those with acute osteomyelitis (n = 10) always had severe pain and war injured had higher pain frequency than civilian casualties. Left sided lesions, numerous surgical operations prior to amputation, retirement from work, neuromata, tender stumps, recurrent depression (particularly since amputation), high scores on ‘neuroticism’ (Eysenck Personality Inventory) organic symptoms and psychosomatic symptoms (Cornell Medical Index) were all more frequent in patients with pain. The findings to be reported here come from a prospective study which aimed to elucidate the course of the reaction to amputation of a limb. It was not originally
*From the Unit for the Study of Psychosocial London NW3 5BA.
Transitions,
97
The Tavistock Centre, Belsize Lane,
98
C. MURRAYPARKES
planned as an investigation of painful phantoms but it became possible, in the course of the study to make a comparison between patients with and without pain which in some respects confirms and in other respects expands Morgenstern’s findings and which leads us to believe that it may be possible, at the time of amputation, to predict who is likely to have persisting pain in a phantom limb. If this is the case we have the opportunity to focus helping resources on this ‘high risk’ group in the hope of preventing such complications from arising. Method
Patients were selected for inclusion in the study from among men and women attending the Department of Health and Social Security’s Limb Fitting Centre at Roehampton for the first time. Criteria for inclusion in the study were: 1. Under age 70; 2. Amputation of arm or leg; 3. No cancer or other disease likely to produce, after amputation, an increasing disability, greater than that produced by the amputation or the disease or injury which brought it about (this did not prevent many patients with signs of persisting disease from being included); 4. Able to understand and speak English; 5. Living within London postal area or North West London. Using these criteria 53 patients were asked to participate in the study. Three refused, 3 died in the course of the year and one other was excluded after she had a stroke. This left 46, 37 men and 9 women who were interviewed on at least two occasions. The initial interview took place 34 weeks weeks after amputation by which time most of the patients had been discharged home from hospital. It was carried out by the investigator who visited the patient at home or in hospital and asked a series of questions about the events leading up to and following the amputation and the respondent’s reactions to them. This included check lists of emotional and physical symptoms which have been found to be affected by other forms of stress (notably the stress of bereavement) as well as questions about a variety of demographic and social variables. The second interview was carried out 13 months after amputation and, as well as ascertaining the course of events over the first year of amputation, the investigator made systematic assessments of the level of psychological, social, occupational and physical health status achieved by the patient at that time. These included an evaluation of the severity of any persisting pain in the phantom limb, rated as “None, Mild, Moderate or Severe”, and of its nature as “Continuous or Intermittent”. In addition a questionnaire was read out and replies recorded to 83 forced-choice questions covering a range of factors some of which were indicators of mental health or psycho-social adjustment and others enabling certain personality traits to be measured. These have been described more fully elsewhere [5, 61. For the purposes of this paper three scores are of particular interest; a “Depression” score derived by adding together scores from 24 questions on general level of contentment or sadness, an “External Anxiety” (or “Worry”) Score derived from 14 questions about commonly occurring sources of anxiety (these included money, children, and social relationships and self assessments of anxiety, self-consciousness and worry), 11 questions on a personality trait “Compulsive Self-reliance”. This included questions from the “Rigidity” score of the Midtown Manhattan Study [7l but seemed to reflect more closely the presence of a strict self control with a tendency to mistrust others and to view the world in ‘black and white’ terms. The meaning of the score can best be illustrated by citing some typical questions from it: “Tell me whether you would or would not give a young person this advice?-‘Once your mind is made up don’t let anything change it’, ‘There are two kinds of people in the world, the weak and the strong’, ‘One drink is one too many’, ‘Never show your feelings to others’, Always be on your guard with people’.” In choosing these variables from among the larger number available for study we relied partly on our review of the literature and partly on overall impressions derived from the qualitative aspects of the study. Information was obtained independently on physical status, the amputation stump, the prosthesis and the level of functioning from the medical officers at the Limb Fitting Centre at Roehampton who made their own examination of 38 of the amputees 12-18 months after amputation. RESULTS Only one patient denied any experience of a phantom limb phenomenon throughout the first three weeks after operation and 85% (39/46) experienced some pain or discomfort in the phantom limb during this time.
Factors determining
the persistence of phantom pain in the amputee
99
A yea.r later 61% (28/46) still had some pain although this was only rated as severe in 7 (15 %) and as moderate in intensity in another 7 (15 %). In the remaining 14 patients pain was rated as mild (30 %). The pains were usually intermittent in character and varied in quality from spasms of sharp pain shooting up or down the limb to painful sensations of pressure or cramp in the extremities. About half of those who had moderate or severe pain likened it to the pain which they had experienced before operation. Such pains were usually most troublesome at night and the patient was often kept awake by pain (7/14 of those with moderate-severe pain). One patient described how he dreads going to bed-“When the pain comes on I’d as soon be dead. It’s like something trying to escape out of the end of the stump, it shoots down the end of your leg and feels as if someone’s trying to pull your leg off... like an electric shock . . . no warning, Woof, it starts up”. He would get out of bed and walk about the room at 3.00 a.m. “I could really scream at times with the pain. . . . It feels as if someone’s sawing it off, very, very painfulAxactly the same sensation as when I was first taken ill”. Most described their pain in less extreme terms as “twinges” or “throbbing”. Pain might be aggravated by nasty weather, or warm weather, by walking in the prosthesis or by taking it off. Several mentioned emotional factors as precipitating or relieving the pain and, apart from analgesics, distraction was the principal method used to alleviate it. One patient, who reported severe pain keeping him awake one night a week, remarked, “When I don’t think about it I don’t seem to be in any pain”. There were none who regarded the pain as a major cause of any persisting disablement which they now suffered and it was notable that only 36% (8/22) of those with pain who were examined by a medical officer reported the pain to him. DETERMINANTS
OF PAIN IN PHANTOM
LIMB AT 13 MONTHS
On the assumption that although these patients were not disabled by pain those with persisting pain in a phantom limb were more likely to go on to have ‘pain problems’ we analysed the antecedent and concurrent factors which were associated with persisting pain. Demographic
factors
Age, sex and socio-economic status were not significantly different in patients with persisting phantom pain as compared with those without. There was, however, a tendency (which did not quite reach significance) for patients with persisting moderate or severe pain to come from households in which there were two or more people living at home. The painful phantom cannot, therefore, be attributed to social isolation. Physical
illness
Eleven indices of physical illness were examined. There was no evidence that persisting pain in a phantom limb was associated with amputations which had followed physical illness as opposed to accidents, proximal as opposed to distal operations, or that it was associated with the presence or duration of severe preoperative pain, deformity or disturbance of function. There was, however, a significant association indicating that persisting pain in a painful phantom limb was more likely to follow an illness which had lasted for more than a year before amputation and an illness which persisted after operation to produce a threat to life or to the remaining limb. There TABLE 1 .-PERSISTING
PHANTOM PAIN AT 13 MONTHS AND DEMOGRAPHIC FACTORS None
ige:
lo-49 50-59 60-70 Sex: Male Female Socio-economic status : I-III(N) non-manual III (M)-V manual Number at home: o-1 2+
Pain in phantom limb Mild Mod.-Severe
p
6 &) 6 (33 2)
4 &Y) 2 (142)
n.s.
6 (33 %) I3 (72%) 5 (28 %)
8 (57 %) 11 (79%) 3 (21%)
ns.
6 (33%) 12 (67 %)
4 (29 %) 10 (71%)
7 (41%) 10 (59%)
10 (71%) 4 (29 %)
5 (36%) 9 (64%) >
IL’-
3 (23 %)
10 (77 %)
Percentage scores corrected for missing data in a few instances.
I”.
C. MURRAYPARKES
100 TABLE
2.--PERSISTING
PHANTOM
PAIN AT
13
MONTHS AND
Accident Left-sided amputation Severe pain > 1 week Gross deformity > 1 week Dysfunction > 1 week Ill 1 year before amputation Physical illness threatens life or limb 4 -I- surgical operations 2 -t previous physical illness
COURSE OF ILLNESS
Pain in phantom limb Mild Mod-Severe.
None n Proximal amputation Intermediate Distal amputation
TYPE AND
8 :A%) 1 (6%) 9 (50 %)
4 f24y%) 3 (21%) 7 (50%)
5 (28%) 5 (28 %I 12 (67%) 5 (28 %) 12 (67%) 2 (11%)
1 (7%) 7 (50 %I 7 (50%) 5 (36%) 8 (62 %) 6 (46 %) 4 (29 %) 4 (29 %) 4 (33 %)
1 (6%) 3 (18%) 2 (12%)
7 &p/) 5 (362) 2 (14%) > 3 (21%) 8 (57 %) 10 (71%) 1 (7%) 10 (71%) 7 (50%) 6 (43 %) 5 (39%) 6 (46 %)
p
n.s. n.s. n.s. n.s. ns. n.s. < 0.05 < 0.05 n.s. KS.
Percentage scores corrected for missing data in a few cases.
were also distinct trends, which did not reach significance, for painful phantoms to be associated with left sided lesions, multiple surgical operations and to many physical illnesses in the past. Preparation for operation Five indices of “nrenaration
for operation” were studied. These included “awareness of intention to operate at time of ahmission”, “information given before operation”, “acceptance of information given”, “preoperative fear” and “attitude to operation”. None was associated with intensity of pain in phantom 13 months after amputation. Postoperative symptoms in stump and limb
Ten indices of stump or phantom limb symptoms during the first 3-4 weeks after amputation were studied and six of them were found to be significantly associated with pain in the phantom limb a year later (Table 3). These were “Severity of pain in stump whilst in hospital”, “ Dissatisfaction with stump at home”, “Severity of stump pain at first interview”, “Severity of pain in phantom in hospital”, “Severity of pain in phantom at home ” , “Severity of pain in phantom at first interview”. Not associated with persistence of phantom pain were “Intensity of phantom limb phenomenon in immediate postoperative period”, “Severity of pain in phantom during immediate postoperative period”, “Presence of phantom limb in hospital”, and “Intensity of phantom limb at interview”. Thus it seems that both stump pain and phantom pain during the first three weeks after operation are likely to be associated with phantom pain later.
TABLE
3.-PERSISTING
FAIN IN PHANTOM
LIMB AT 13 MONTHS
AND POSTOPERATIVE
SYMPTOMS
IN STUMP
OR LIMB
None n
Marked phantom limb immediate post op. Mod.-severe pain in phantom immediate post op. Some stump pain in hospital Some pain in phantom in hospital Marked phantom limb in hospital Some pain in phantom at home Dissatisfaction with stump at home Marked phantom limb at 3 week interview Some pain in stump at 3 week interview Marked pain in phantom at 3 week interview
Pain in phantom limb at 13/12 Mild Mod.-Severe
12&Q 8 6 9 7 8 7 5
(47 %) (38%) (50 %) (39 %) (44%) (39%) (28 %I
11
&%)
10 (71 %f 12 (92%) 12 (92%) 4 (31%) 12 (86%) 9 (64%) 4 (29 %) 5 (36%) 1 (7%)
9 :649%)
p
n.s. n.s.
;A ;;;:;
< 0.01
11(85<) 7 (50%) 13 (93%) 12 (86%) 9 (64%) 11 (79%) 5 (36%)
< 0.02 n.s. < 0.01 i 0.05 n.s. < 0.05 i 0.05
Factors determining the persistence of phantom pain in the amputee
101
Thirteen months after amputation there were still 8 patients whom medical officers reported as having “stump complications”. These included tender horny points, vascular scars, pressure abrasions, etc. Six of these 8 had some pain in the stump and all of them had pain in their phantom limbs. Despite this there were no cases in which either the investigator or the medical officer felt able to recognize a clear cause for phantom pain. “Personality” and “Pain-Sensitivity” of the patient At the initial interview the interviewer questioned each patient carefully about his view of his own sensitivity to pain, his like or dislike of changes in his life, and his view of himself as “perfectionist” or “slapdash”. With the patient’s assistance he made a mark on each of three 10 c.m. analogue scales whose extremes were labelled “Extremely insensitive to pain-Extremely sensitive to pain”, “Extremely adaptable-Extremely rigid” and “Absolute perfectionist-Completely slapdash”. In addition the health questionnaire which was completed at the final interview enabled two scores to be obtained which are thought to reflect relatively unchanging pesonality attributes, both being unaffected by the stress of bereavement as judged in a controlled study of U.S. widows and widowers [6]. These were “Compulsive Self-reliance” and “External Anxiety (or ‘Worry’)“.
TABLE 4.-COBRELAT~ON OF PERSISTINGPAIN IN PHANTOMLIMBAT 13 MONTHSWITH FIVEPERSONALITYINDICES Correlation with phantom pain Pain insensitive/Sensitive Adaptable/Rigid Perf&tionist/.?lapdash Compulsive self-reliance External anxiety (worry)
or20 0.36 -0.13 0.35 0.19
P n.s. < 0.02 n.s. < 0.02 n.s.
As will be seen from Table 4 two of these dimensions correlated significantly with persisting pain in the phantom limb, “Rigidity” and “Compulsive Self-reliance”. Among the 11 items contributing to the “Compulsive Self-reliance” score the three which best distinguished patients with persisting pain from those without were-“There are two kinds of people in the world, the weak and the strong”, “Once your mind is made up, don’t let anything change it” and “Always be on your guard with people”. Inspection of the data reveals that 8 out of the 14 who had moderate or severe phantom pain had scored over 2.5 on “Pain sensitivity”, whereas only 10 out of 30 of those with little or no pain reported this degree of “Pain sensitivity”, but these figures do not reach statistical significance. Reaction to amputation Twenty-four questions reflected the emotional reaction to the amputation and its aftermath. Only one of these was significantly related to the persistence of nain in the phantom limb. This was the interviewer’s assessment of a sense of insecurity rated as none, mild, moderate, marked or very marked at the time of the first interview. The data showed that half of the 14 whose ohantom pain was rated as moderate-severe a year after amputation were “markedly insecure” at the time of the first interview (chi-squared 4.31, p < 0.05 using Yates’ correction). This is not surprising in the light of the finding reported above that most of these patients were complaining of pain in their stump at this early stage. Occuoational adjustment A striking finding was the fact that 15 out of 17 respondents who were unemployed a year after amputation had pain in a phantom limb (Table 5). This desnite the fact that no oatient blamed his pain for his unemployment. (As stated above most pains were mild or intermittent in character and they often only occurred at night. It was unlikely, therefore, that they would constitute an obstacle to employment). Equally striking was the discovery that few of these patients had exoected to remain unemployed and that assessments of poor work prospects and expected inability to cope with life as an amputee at the time of the first interview were not oredictive of vain in the vhantom a vear
102
C. MURRAYPARKES TABLE~-PERSISTING PAININ PHANTOMLIMBAT 13 MONTHS MENT AT 13 MONTHS
X EMPLOY-
Pain in phantom at 13 months None Mild Mod.-Severe
8
n Employed (inc. housewife) Unemployed (inc. retired)
16 :89%) 2(ll%)
6 (&) 8 (572)
8.63. 2 d.f. p-c 0.02.
Chi-squared Other outcome
7 &o/) 7 (502)
measures
Although the presence or absence of a painful phantom limb was taken into account in making assessments of overall outcome it seemed that other factors were more important determinants and in the final analysis, the intensity of phantom pain only correlated r = 0.09 with the interviewer’s five-point outcome measure. Nine of the 14 patients were rated as having had a ‘satisfactory’ outcome despite the persistence of occasional moderate to severe phantom pain. Likewise there is virtually no association (v = 0.09) between the interviewer’s assessment of psychological adjustment and phantom pain at the final interview or between “Depression Score” and phantom pain (r = O-13). PREDICTION
OF PERSISTING
PAIN
If we award a score of one point for each of the four best predictors of persisting pain we can obtain a simple ‘predictive score’. 1. Some pain in phantom or stump 3 weeks after amputation. 2. “Compulsive Self-reliance” score of 4+. 3. Amputation follows illness of > 1 year duration. 4. Unemployed at end of year. This score correlates r = 0.52 with persisting pain in the phantom limb and a score of 2-t is associated with phantom limb pain in 19 out of 22 cases (see Table 6). To make this a truly ‘predictive’ score it would be necessary to omit the “unemployment” item which can only be scored at the end of a year. This can be done without greatly reducing predictive power. TABLE 6.-PERSISTING MONTHS
PAIN IN PHANTOM LIMB AT X “PREDICTIVE SCORE"
13
Pain in phantom at 13 months “Predictive Score”
None
;f
6 & %)
1 2+
Mild
Mod.-severe
7 (50%) Chi-squared
I2 (86%)
16.73. 4 d.f. p ~0.01.
DISCUSSION
There is no reason to believe that the sample of amputees reported in this study are not typical of London amputees under age 70. The exclusion of the severely ill group introduces a slight bias but in doing so removes a group whose reaction to amputation might well have been masked by their reaction to the major physical symptoms which remained. Although the phantom pains reported by these patients were less disabling and less continuous than those which are complained of by the small minority who seek treatment for chronic pain, they resembled such pains in most other respects. Thus
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Riddoch [2] has described the paroxysms of cutting, darting or tearing pain which may occur spontaneously or in response to stump pressure or temperature changes and which originate at the same time as the phantom and may fill the whole limb or be focussed in the site of the previous lesion. All of these characteristics were found in the current study and reassure us that what we are studying is a less troublesome form of the same phenomenon. The differences, however, are also worth noting; not least the fact that many of our patients did not complain to a doctor about the pain. They seemed to regard it as an expectable consequence of amputation which would have to be tolerated and even those who asked for analgesic or sedative drugs from their G.P. did not always mention the pain to the medical officer at the Limb Fitting Centre. This leads one to suspect that the prevalence of persisting phantom limb pain may be very much larger than the statistics of limb fitting centres reveal. The findings give good grounds for hope that the persistence of pain in a phantom limb can be predicted at the time of initial attendance at a limb fitting centre. The history of a long illness with several surgical operations prior to amputation and persisting pathology afterwards, evidence of a rigid, compulsively self-reliant personality, the presence of pain in the phantom limb or stump and accompanying feelings of insecurity, combine to present a reasonably clear picture of the “painprone patient”. If, in addition, he is unable to obtain a job within a year of amputation then there is a high chance that he will be found to have persisting pain in a phantom limb. Further studies will be needed to confirm the utility of the ‘predictive score’ in other samples of amputees. These findings agree with those of Morgenstern [4]. In both studies pain was associated with left sided lesions, a relatively large number of previous surgical operations, tender stumps and retirement from work. The association between stump pain and phantom pain is mentioned by Riddoch; in the present study the association was strong and a quarter of those with phantom pain had some observable abnormality of the stump. The finding that emotional disturbance was not significantly more frequent in the “high pain” group before, during or after the postoperative period seems to indicate that phantom pains are not a channel for the “overspill” of emotional disturbance. The possibility remains that the pain may sometimes be an “alternative” to emotional disturbance perhaps representing a “depressive equivalent” [8]. That psychological factors do play a part in determining the persistence of pain is strongly suggested by the finding of high scores on “Rigidity” and “Compulsive Self-reliance” among the patients with pain. TO discover how this influence may come about we can look more closely at two case examples, one an example of a patient with a painful phantom whose overall outcome was rated as “very good”, the other a patient with pain whose outcome was only “fair”. Arthur M., a deeply religious man, aged 64, had “lived a life of personal service”. Orphaned at 14 he had to abandon his plan to become a doctor and instead served in the R.A.M.C. and later “for family reasons” became a bank clerk. He lived with his brother and spent much of his spare time in visiting the sick and in religious activities. He married at 44, a happy union to a woman who, like himself, was a devout Roman Catholic. They had no children. At about the same age Mr. M. developed symptoms of heart disease.
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In 1962 he retired from work because of the progression of cardiac ischaemia. He continued to live a sociable life at home and to devote much of his time to hospital visiting. In April 1969 he was admitted to hospital after the sudden onset of ischaemic symptoms in his left leg. He did not take this very seriously at first and approached his first operation, embolectomy, with considerable optimism. The operation was not a success and the following day he was told that through-knee amputation was necessary-“You’ll either lose your leg or your life”, said the surgeon. “My little bubble of hope had been pricked,” he said, but he accepted the prospect with apparent equanimity and after the operation, “I had the feeling that I could kick the world about”. He was the hero of the ward: “They told me they were going to write me up as their prize patient”. It was only when he was fitted with a pylon a week later that he began to realize the extent of his disability. At about the same time he was told he had diabetes. He wept bitterly-“The helplessness, being dependent on people . . . the humiliation”. Pains in the phantom and stump started 2-3 days after the operation and reached a peak during the second and third weeks. The leg felt “as if it had grown in length and was hanging over the end of the bed”. At first the toes started itching, “Then I got an iron grip round the ankle and a burning in the centre of the foot”. These symptoms were worse on warm days (when the foot felt “frozen”). He also experienced a moderate ache in the stump itself which was worse if he thought about it. Despite moderate depression and tearful episodes he remained a model and sociable patient. He was discharged home a month after the amputation and was first interviewed for the study 5 days later. At this time he said his spirits were improving although he found the forced inactivity frustrating. The pains in stump and phantom were much improved but the healing of the wound had been delayed by local infection. He described himself as warm-hearted, demonstrative and outgoing, a meticulous perfectionist who disliked change and had very high standards. He saw pain as “purifying”, a form of suffering which must be accepted but this did not prevent him from taking DF 118 for it. He denied any feeling of bitterness or resentment of what had happened and unlike most amputees, said that he had had no difficulty in believing that he had lost his leg. Mr. M. anticipated no difficulty in coping with life as an amputee and was looking forward to resuming his hospital visiting with the added experience which he had now gained. But his subsequent progress was very much slower than he had anticipated. He lived on a steep hill and it was 10 months before he began to venture out. Thirteen months after amputation he had resumed attendance at church meetings nearby but was only able to manage occasional hospital visits. Nevertheless he was cheerful and active about the house, was visited by his friends and he continued to maintain his ‘heroic ‘image. He found his prosthesis comfortable but needed a stick to give added security and two when he went out. “Nasty pains” in the phantom continued to be a problem several times weekly. “It feels as if the toes are bunched up very much,” he said. He said he “would not like to complain” about it to the medical officer at the Limb Fitting Centre. He had determinedly stopped taking DF 118 for the pain 2 months previously and said that it was his religion that had helped him to accept the pain. To all appearances he was making a very good adjustment but he was very much troubled by restlessness at night and his wife, who had herself suffered from hyperthyroidism, had taken to sleeping in the living room. Mr. M.‘s diabetes and cardiac condition were causing no trouble and the questionnaire scores gave no indication of depression, anxiety or any tendency to worry. He had a score of 5 on “Compulsive Self-reliance” reflected in his agreement with such statements as, “Once your mind is made up, don’t let anything change it”, “One drink is one too many” and “There are two kinds of people in the world, the weak and the strong”. Clearly he saw himself as one of “the strong” but this selfimage was difficult to maintain in the face of his incapacity and although he continued to speak of his “duty to give service to others” he was now largely reliant on others to visit and “give service” to him. He admitted to feeling frustrated by these restrictions but added, characteristically, “I’m not going to sit down and cry”. Robert P., a fishmonger, was 69 when he lost his right leg after 15 years of intermittent claudication culminating in 9 weeks of severe pain in the foot. A rigid, shy man, with few friends, he lived with his wife and two unmarried wealthy children in a pleasant middle class home in north London. Although he had officially retired from work 5 years previously and had no need of the money, he had continued to work 3-4 hours a day in a fishmonger’s shop until the latter part of 1968. During the first half of 1969 he underwent, successively, a bilateral sympathectomy, arterial graft, prostatectomy, nephrectomy (due to damage to the ureter sustained during the sympathectomy operation), and a mid-thigh amputation of the right leg. By this time, “I was suffering so bad I wasn’t surprised 7. . I think in the last few days I was looking forward to it”.
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After the operation he woke up feeling “fine”. He was quite cheerful and although he had bad pains in his phantom and stump he felt able to disregard these. Two days later, “I began to realize what it meant . . . Would I walk again? Will I get better ?’ He became “very depressed” and this was, if anything, worse after he returned home 3 weeks later. When seen by the investigator a few weeks after that he was crying a lot and ashamed of being a burden to his family. “You don’t realize until you want to use your leg. You’ve got to ask your wife for everything. I sit so many hours and I can’t read a book. So I sit a lot of hours thinking about it . . . I don’t like people to see me like this.” His stump was still sore, tender and discharging slightly and he had a distinct phantom limb with “aches and pain and a sore place on the heel”. He had fallen once and was very frightened of falling over again and “bursting the wound open”. His ‘good’ leg was very weak and he was worried by the “burning pain” which came on when he tried to walk on it. had my life”. At night he Asked if he felt bitter or resentful, he replied, “I can’t grumble-I’ve “lay awake with depression” and instead of being cheered, as are most amputees, by the sight of amputees at the Limb Fitting Centre who are coping well with their prostheses, he saw only “people who’ve had legs for a long time and still not using them properly-you realize it’s difficult”. He had no plans for the future and expected life to be “very difficult”. When reinterviewed a year later he started by reassuring the investigator that he was feeling “fine”. “I’ve got everything I could want-a nice house, wonderful wife and wonderful children”. But he soon became tearful when he spoke of the restricted life he was living. His walking was now restricted by claudication in his good leg and he was also getting pain at night in the foot which made him fear that he would soon have to lose that leg. He tended to become tearful each morning: “I see my leg in the corner and I think-it’s come to this”. Lacking any personal interests he felt ‘caged up’ at home and said, “It’s the worse thing in the world, to retire. I think it’s misery.” Although the prosthesis was fitting well and he had no pain or discomfort in the stump he was still having nocturnal attacks of pain in the phantom toes and felt that this had changed very little since the first interview. “At times it gets so bad you can hardly bear it.” Attacks of pain lasted up to two hours but he did not mention them to the medical officer who examined him at the Limb Fitting Centre. His questionnaire scores reflected a worried man with moderate depression (“You sometimes can’t help wondering if anything is worth while any more”) but he also claimed that he can be “very happy” and that the loving care of his devoted family made up for a lot. His score of 5 on “Compulsive Self-reliance” reflected agreement with such statements as “Whatever you do must be done perfectly”, “Always be on your guard with people” and “Never show your feelings to others”. The picture which emerged was of a frustrated old man who tried, but did not succeed, in hiding his feelings of depression and his anxieties about the deterioration in his health. The succouring care which he received from his wife and family only served to make him feel more helpless but he would have been ungrateful to them and ashamed of himself if he had complained. His overall outcome was rated as “fair”. CONCLUSION
These two men are typical of the patients who had moderate to severe pain in a phantom limb 13 months after amputation and they each have most of the characteristics which our statistical analysis found most commonly in this group. Because the “stiff upper lip” is an attribute of the rigid, compulsively self-reliant personality it is not surprising that so many of these patients made a ‘good’ adjustment to amputation and appeared to be functioning well a year later. Our findings suggest, however, that this ‘good outcome’ is more apparent than real and that the painful phantom may be the tip of an iceberg of discontent. The existence of an association between personality type and phantom pain does not, of course, prove causation. But it is possible to suggest an explanatory hypothesis which, even if it is not itself directly testable, could lead to a form of preventive intervention whose efficacy could be tested. What are the personality features which are associated with persistence of phantom pain? These patients were placed at the rigid end of an “adaptable/rigid” dimension and this implies that they dislike and resist change. Amputation of a limb gives rise
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to a host of changes in a person’s life, many of them major. One might well expect that people who are unadaptable would find this a particularly difficult time. Yet patients with pain did not report any more overt emotional disturbance at the time of the operation than those without pain; why should this be? The answer may well be found in another personality characteristic shown by patients in this group-Compulsive Self-reliance. The term “compulsive” has been used to designate this type of person because of the extent to which he tries to continue relying on himself even when, because of circumstances, he greatly needs to rely on others. To such a person any reliance on others is taken to be a sign of weakness, a loss of control over his own life which seems to threaten his very survival. (Reasons for this lack of ‘basic trust’ can be assumed to lie in his past, perhaps in childhood experience, but we have no data to confirm or contradict this hypothesis). To the compulsively self-reliant amputee, particularly if his disablement is protracted and he is unemployed, the experience of being helpless and of needing to rely on others, however loving they may be, is a galling and humiliating experience; anyone else might become deeply depressed or cry his eyes out. But for him to engage in such behaviour would only serve to confirm his feelings of helplessness. In order to preserve an image of himself as a strong, controlling person the compulsively self-reliant man must hide his grief and pretend to himself and to others that all is well. “Never show your feelings to others” is his watchword and, even if the feelings do show through from time to time, they are quickly suppressed or repressed. If he is successful in this he may even achieve an exalted status as a ‘hero’ which will help to restore his injured self-esteem. The mechanism whereby repressed emotions and avoided patterns of thought and action can produce or prolong phantom pain is not known. But the locus of such pains may, for instance, be determined by suggestion. Thus the woman whose husband has died from coronary disease may well misinterpret the palpitations and presternal discomfort which are common features of normal grief as evidence that she too has heart disease. The anxiety and focussing of attention on the symptoms seem to provide a psycho-physiological basis upon which a severe hypochondriacal illness can be built up [9]. Any amputee, whose stump and phantom limb are obvious foci of anxious attention, would seem similarly vulnerable to the possibility of symptom elaborations. Add to this postoperative pain, which may well be organic, and a prolonged period of unemployment with little to do but sit and think about oneself and one’s disability and the stage is set for the development of pain problems. In these circumstances it would not be surprising were quite a minor tendency toward rigidity or compulsive self-reliance to tip the balance. That only a small proportion of those with pain problems a year after amputation seek treatment for them at a limb fitting centre may reflect the fact that the compulsively self-reliant patient does not readily seek for help. He may also feel that it is better not to aggravate the pain still further by “making an issue” of it (a view that is also often held by the medical officer). Further research is needed to discover why some patients do complain of the pain. If our explanatory hypotheses have validity they carry important implications for preventive intervention. The rigid or compulsively self-reliant patient is not hard to spot and we need not fall into the trap of supposing that because these patients
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proudly avoid asking for special help they do not need it. A programme aimed at identifying the pain-prone patient and giving him an opportunity to develop a trusting relationship with a caseworker in which it will become ‘safe’ for him to express his very real feelings of grief, anger and helplessness might well reduce the need for repression and consequently prevent the persistence of painful phantom limbs. This would be strengthened were simultaneous casework to be given to the patient’s family to educate them in the need to allow the amputee to remain as autonomous as his physical condition permits and to preserve his precarious self-esteem by finding new roles for him instead of overprotecting or ‘mothering’ him. Equally they may need to learn how to avoid conniving with the patient by fostering a bogus self-reliance and how to permit him to express his distress and anxiety without ‘losing face’. Such an approach, since it would not be focussed on the limb at all, would be unlikely to foster symptom elaboration. If this programme were to prove successful it would carry implications for the medical and nursing care of the amputee. It may well be that ‘heroic’ or excessively self-reliant attitudes are encouraged in some patients by the culture of the surgical ward. For, if it is healthier for a patient to ‘break down’ and to express the feelings of grief and helplessness which normally arise after any mutilating operation or illness, then we may need to provide a setting in which that can happen. Sympathetic understanding in conditions of privacy may need to be provided for patients who must face the prospect of major surgery and opportunities given them to withdraw from the bonhomie of public life in a hospital ward during part of the postoperative period. The repression of emotion has long been regarded as a potent cause of psychiatric symptoms. It comes as no surprise to find that it may also be a cause of troublesome somatic pain with or without the coexistence of an organic lesion.
Acknowledgements-Thanks are due to the staff of the Limb Fitting Centre, Roehampton for their aid and advice and to the amputees who took part in the study. The work was carried out with the assistance of a grant from the Department of Health and Social Security.
SUMMARY
Forty-six amputees were interviewed one month and thirteen months after amputation of an arm or leg. Complaints of persisting pain in a phantom limb were found to be significantly correlated with rigid and/or compulsively self-reliant personality, many people at home, illness of over 1 year’s duration prior to amputation, persisting illness with threat to life or limb after amputation, pain in stump during first month after operation, pain in phantom limb during the same period, stump complications persisting at 13 months, and unemployment or retirement at 13 months after amputation. It is concluded that it may be possible to predict, at the time of amputation, which patients are likely to have problems with persisting pain in a phantom limb. Two illustrative case examples are described and the possible aetiological and therapeutic implications of the findings are discussed.
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1. KOLB L. C. Psychology of amputee: phantom phenomena, body image and pain. CoNect. Papers, Mayo Clin. 44, 586 (1952). 2. RIDDOCH R. G. Phantom limbs and body shape. Brain 64, 197 (1941). 3. SOLORENK. A. The phantom phenomenon in Finnish war veterans. Acta Orthop. Stand. Suppl. 3, 119 (1962). 4. MORGENSTERNF. S. Chronic Pain. In Modern Trends in Psychosomatic Medicine-2. (Edited by HILL 0. W.), Butterworth, London (1970). 5. PARKESC. M. and BROWN R. J. Health after Bereavement. Psychosom. Med., in press. 6. PARKESC. M., GLICK I. and WEISSR. Determinants of Grief, in preparation. 7. SROLEL. Mental Health in the MetroDolis. McGraw-Hill. New York (1962). 8. DEUTSCHF. and MURPHY W. F. The Clinical Interview. vol. 1. Int. Univ. Press, New York (1955). 9. PARKES C. M. Bereavement and mental illness-l. A clinical study of the grief of bereaved psychiatric patients. Br. J. med. Psychol. 38, 1 (1965).