Journal of medical ethics, I977, 3, 6x-73

Patients with protracted pain: A surveyconducted at The London HospitalJennifer M Hunt, Thelma D Stollar, David W Littlejohns, Robert G Twycross and Duncan W VereThe London Hospital and the Department of Pharmacology & Therapeutics,The London Hospital Medical College

Physical pain has always been part of humanexperience, and throughout history it is recordedthat doctors and wise men and women havesought to ease pain. The attitudes of thosesuffering pain, however, have variedfrom stoicalacceptance to sullen endurance. Today, most peopleconsciously seek to avoid pain or to have their paineased, although they do not always expect what infact appears to be possible. This study of x3patients with protracted pain was carried out atThe London Hospital by a professional group to seehow patients regarded their own pain and theefforts of doctors and nurses to relieve it. Theattitudes of the doctors and nurses were also studied,and the results, despite the limitations of thesurvey, suggest that:

I) Patients' expectations are often too low, asindicated by the unanimous praise for both doctorsand nurses, despite in many cases their still beingin pain.

2) There is roomn for improvement in the use ofanalgesics in patients with protracted pain asindicated by the high proportion of 'as-required'prescriptions.

3) Doctors do not appreciate fully that theeffective analgesic dose varies from patient topatient, as indicated by the presence of remittentpain in patients receiving analgesics regularlyevery four hours.

4) Nurses accept the presence of unrelieved painin patients too readily, as indicated by the practiceof confining enquiry about pain to drug rounds andby ignoring non-verbal comnunication.

5) Nurses do not appreciate their potential asagents of pain relief as indicated by their failureto emphasize their specific contribution as nurses.

6) There is a need to modify current teachingabout pain and its relief in both medical andnursing schools.

In recent years, although much has been done inpain clinics and palliative care units to improve thecare of patients with protracted pain, many are stillcared for in general hospitals which deal mainly withthe acutely ill. As the following case history suggests,this is not always ideal'.A g9-year-old man was admitted to hospital;

communication was difficult because he was deaf.Initial investigations were based on a presumptivediagnosis of renal colic, and only after nine days was

it realized that he had persistent back pain. Anothersix days passed before more than a mild analgesicwas prescribed. Although it was agreed that the painwas probably caused by a skeletal metastasis, furtherdelays in obtaining relief were caused by the reluc-tance of a senior nurse to accept that the patient wasin pain, by the hesitancy of junior doctors to use amore potent analgesic when the consultant was onholiday, by postponing radiotherapy until a bonescan was available, by technical failure of the scan,by delay in planning radiotherapy because radio-graphs were missing and by the patient's refusal ofradiotherapy because of the pain caused by movingto and from the ward. He died, still in pain, afternearly three months in hospital; the factorsresponsible are common in any busy acute ward andmay be inevitable in this setting.We decided, therefore, to conduct a survey in the

general wards of The London Hospital to discoverhow successfully patients obtained relief fromprotracted pain and to enable us to develop methodsthat would identify institutional and culturalfactors which prevent or potentiate relief.

MethodProtracted pain was defined as pain, other than post-operative, requiring treatment for more than 48hours. Interviews were conducted with the patientsand the nurses associated with their care. Patientswere interviewed by a medical social worker andnurses by a nurse research officer: it provedimpractical to interview the doctors. Patients thoughtto be experiencing protracted pain and/or receivingtreatment to relieve it were asked to help in asurvey about pain control. If they agreed, they wereinterviewed on three occasions, generally withintwo weeks.

Pain was assessed both qualitatively ('What doesyour pain feel like ?'; 'When do you get pain ?') andquantitatively using a visual analogue scale (VAS)completed bythe patient (fig i). Patients indicatedthesite(s) of pain by marking or shading the appropriate

Most extreme Completelypain imaginable free of pain

Fig i Visual analogue scale for assessing pain: thepatient was asked to put a mark across the line toindicate how much pain he had at the moment. This linewas rO cm long.

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6a JfM Hunt, T D Stoller, D W Littlejohns, R G Twycross, D W Vere

area(s) on a body diagram2. In addition, questionswere asked about measures used to relieve the pain.Certain other symptoms - appetite, nausea,dyspnoea, cough, insomnia, weakness and mood -were also assessed using VAS. Although most of theinterview was structured, the inclusion of severalnon-specific questions ('Tell me about your illness';'Is there anything else which helps ease the pain ?';'Do you have any other symptoms ?') enabledpatients to comment spontaneously.The patients were also asked if they had had a

similar illness before and if they knew of anyone,close or distant, who had. They were then askedabout their experience of support from others; didthey talk to other patients about their illness andwas this helpful? How much contact did they havewith other people, for example, the chaplain? Dida medical student come to see them ? Finally, therewas an open-ended question which asked if they hadany other problems, for example, financial, socialor spiritual.

After the first interview patients were given aletter thanking them for their help; it contained thename of the project coordinator, stated the purposeof the survey and whom to contact for furtherinformation. It also served as an aide mbnoire andcould be used by patients to explain to theirrelatives why they had been interviewed. Inanalysing the patient questionnaire, the answersgiven were used to classify the pain as continuous,remittent (times with less pain) or intermittent(times without pain).The nursing staff were told about the project at a

meeting on the ward before any data were collected.At that time, and again before interview, they werereassured that their answers would be anonymousand that they were not obliged to participate. Noattempt was made to select a representative sampleof nurses. On each occasion the sister or nurse incharge decided whether she or another nurse wouldanswer the questions. They were interviewed on theward while on duty and, if too busy, the interviewwas postponed until another time. The questionnairewas designed to cover much of the same ground asthat for patients. The nurses were asked for factualinformation ('What is wrong with'. . . ?'), forqualitative assessments ('How much of the timedoes he/she get pain ?'), and for their opinions('Generally speaking, are you happy with the careyou can give the patient ?').The patients' diagnoses were obtained from the

hospital notes and, because of the design of thehospital treatment chart3, it was possible to obtainan accurate record ofanalgesic and other medication.

ResultsPermission was obtained to visit patients on ninewards: six medical, two surgical and one gynae-cological. During the three months of the project,

we were informed of 27 patients prescribedanalgesics for 48 hours or more. Six were too ill tointerview. Data were, however, obtained about theother 2I patients, though in only eight instances didthis come from both patient and nurse. In the timeavailable, it was possible to interview only 13 outof the 2I. Twenty nurse questionnaires werecompleted about i6 patients by I3 different nurses.The patients were aged from 35 to 86 years (table I).

Table I Age distribution of patients

Age in years Total

<50 50-59 60-69 70-79 >80

Male 3 I 4 0 0 8Female 3 3 6 0 I I3Total 6 4 10 0 I 2INo.interviewed 4 3 5 0 I I3

PATIENT QUESTIONNAIREAll the patients interviewed appeared to understandthe questionnaire, though some needed moreexplanation than others. Patients readily recordedthe site(s) of their pain on the whole-body diagrambut, generally, needed more guidance in completingthe VAS. The first interview lasted about three-quarters of an hour; only once was it necessary toleave part of the interview until another time. Inaddition, K refused to continue the interview whenhalf-way through.

PainOf four patients with continuous pain, only B hadbeen prescribed regular analgesics (table II).Although receiving two dextropropoxyphene-paracetamol tablets (Distalgesic) three time a day,dextromoramide IO mg four times a day and chlor-promazine IO mg four times a day, she experiencedonly slight relief, The VAS score was, however,only 14 mm. The other three patients were pre-scribed either Distalgesic or paracetamol 'asrequired'. Patient K did not apparently obtain relieffrom 'tablets' and, in fact, never asked for or receivedany. At the time of interview a firm diagnosis hadnot been made; he subsequently received predni-solone IOmg three times a day and oral diamorphinefour hourly. These not only gradually eased themyopathic pain in his thighs but also resulted in amarked improvement in strength. In the case of Iand J, although the pain was partially relieved bymedication, I generally received only two tablets ofDistalgesic once a day and J, when interviewed, hadreceived no paracetamol for two days.Both patients with remittent pain received

regular analgesics. A was having diamorphine iS mgwith chlorpromazine 25 mg every three hours bymouth and also diazepam 5 mg three times a day;

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Patients with protracted pain: A survey conducted at The London Hospital 63

Table II Data on pain from patient questionnaire

Pain Patient Age Sex Cause of pain Quality of VAS Analgesicspain when score Reliefpresent (mm) Regular As required

'B 68 F Myeloma Crushing I4 + + SlightI 64 F Pulmonary Throbbing,

Continuous embolism sharp, heavy 23 - + Tablets gave slight relief67 F Diverticular Dull ache 42 - + Tablets gave moderate

disease relief for two hrwK 58 M Neuromyopathy Terrible 29 - + Tablets gave no relief

Remittent fA 44 M Cancer Dull ache 8 + - ModeratetD 53 F Cancer Burning 39 + Moderate relief for Ii hr

E 46 F Cancer Nagging 6 - + Not askingfor orreceiving analgesics

F 59 F Abscess Niggling 8 - + Tablets gave completeInterntmtentH relief for several hours

H 62 M Cancer Dull ache o - + Tablets gave completerelief for several hours

LM 65 F Diverticular Burning 54 - + No reliefdisease

rC 86 F Cancer Dragging I3 - + Pain on coughing orwhen examined

None , G 35 F Cancer Grinding 3 - + Much easier sincetraction one weekpreviously

lL 49 F Rheumatoid Dull ache 9 + + Much easier sincearthritis admission for surgery

D received dextromoramide IO mg every four hours.None of the four patients with intermittent pain

received analgesics regularly though, in the case ofE, the pain was probably no more than 'backgroundinconvenience'. F received two 5oo mg tablets ofparacetamol three times a day, prescribed 'asrequired', and H received one or two tablets ofDistalgesic a day. After these both experiencedcomplete relief for several hours. The fourthpatient, M, a 65-year-old woman with hereditaryhaemorrhagic telangiectasia, although prescribedparacetamol i g 'as required', received onlymagnesium trisilicate mixture, IO ml, once or twicea day.Of the three patients who said they currently had

no pain, L had rheumatoid arthritis and wasreceiving prednisolone, aspirin and indomethacin.The other two had had pain but, by the time ofinterview, this had apparently eased completely,though one of them recorded a VAS reading of13 mm. Neither was receiving any analgesics,though both had earlier.

Other symptomsThe VAS scores relating to the other symptoms areshown in figure 2. Because of the small numbers, itwas not possible to analyse them parametrically.The scatter in the appetite, sleep, strength andmood results is as expected with the type of patientinterviewed. The fact that patients were selected

because they were considered to be experiencingpersistent pain and not, for example, because theyhad terminal cancer may account for the lowincidence and generally mild degree of nausea,dyspnoea and cough recorded. Only A and Breceived an antiemetic regularly.

InsightThe answers to the question, 'Tell me about yourillness ?', recorded verbatim at the beginning of theinterview, are summarized in table III. In answerto a later question, 'Do you know anyone who hashad a similar illness?', E, who earlier had beencompletely non-specific, replied, 'I suppose youmean cancer. Yes, my father died of cancer twentyyears ago'. Similarly, I, who earlier said she had notbeen given the name of the illness, added, 'Motherdied of cancer of the stomach, and father died ofcancer of the throat'. Some patients who appearednot to know their diagnosis or its implications at thebeginning of the interview spoke later of theirdistress at leaving loved ones, or gave other signsthat they appreciated the gravity of their condition.As all the patients lived within a short distance of

the hospital, they could be visited easily by relativesand friends. This they welcomed and, although Iconsidered that she had too many visitors, they allfelt supported by relatives and friends. They wereuinanimous in their appreciation of the availabilityof medical and nursing staff.

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64 JM Hunt, T D Stollar, D W Littleohns, R G Twycross, D W Vere

Most extremepain imaginable

Can't face foodat all

I feelas sickas I couldpossibly be

Breathing asdifficult as couldpossibly be

Cough as badas it couldpossibly be

Couldn't havebeen worse

Extreme weakness

Could not feelmore miserable

illIll I. 11111111

5

'J 23

I 5I I 11111

b8

II I .II I

6liii

I II I5

III II III IIliii El II

2

I I I I I II IIIIII I I Ii

2

II I III I II liii ii

2

Normalappetite

I do not feelsick at oll

Breathing no Fig 2 Incidence and severitytrouble atall of symptoms assessed by VAS.

Above the line=first interviewNo coughatalI~(n= I2); below the line=secondNocoug atoll interviewv (n=io).

A perfect night

Normal strength

Could not feelhappier

Table III Patient questionnaire: Diagnosis and insight

Patient Age Sex Diagnosis Patient's understanding Accuracy of Social worker's commentof illness understand-

ing

A 44 M Carcinoma of lung, left-sided pleural effusionwith pleuritic pain

B 68 F Myelomatosis, vertebralcollapse

C 86 F Carcinoma of renal pelvis,widespread secondaries,especially in lungs

D 53 F Carcinoma of lung,extensive invasion

I have cancer of the lung. AccurateI was recently told thisby the doctor at my request.It was thought, at first, tobe depression because ofmy father's death a fewmonths ago. I was treatedwith antidepressives butthis didn't help the pain,which got worse. I wasrecommended admissionbut there was still a longdelay.Illness started with back Largelytrouble following a cold. accurateRadiograph showed'collapsed vertebrae'. Nowillness is to do with bloodbut I don't know the name- ?anaemia. I think it maybe more serious.Doctors called it haema- Largelyturia, but this has cleared inaccurateup. I don't know the nameof the illness, but I thinkit may be 'gallstones'because doctors seem tofind something in rightabdomen.Started with 'rheumatism', Largelynow 'inflammation of inaccuratespine'.

Recently told diagnosis atown request. Manner wasvery tense throughoutinterview; markedly unableto express his feelingswithin the context of thequestionnaire.

Aware that her illnessmight be serious. At theend of the first interview,said she did not want toleave her daughter.

Gave no hint of knowingdiaosis but said, at theend of the interview, thatshe only worried about herson when she was gone.

This patient, who remainedin pain, could not discussher illness beyond thebrief statement given butstrongly expressed the wishto go home to her family.

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Table III-continued Patient questionnaire: Diagnosis and insight

Patient Age Sex Diagnosis Patient's understanding Accuracy of Social worker's commentof illness understanding

E 46 F Carcinoma of breast,widespread metastases inbone.

F 59 F Paranephric abscess,bilateral hydronephrosis,renal failure with anaemia

G 35 F Carcinoma of breast,secondary in gluteal softtissues

H 62 M Inoperable carcinoma ofstomach, cervical nodemetastases

I 64 F Previous carcinoma ofbreast, now venousthrombosis and pulmonaryembolism

J 67 F Diverticular disease ofcolon, osteoarthritis ofhips and lumbar spine

Right mastectomy 3iyears ago, now excruciat-ing pain base of spine - Ithought 'arthritis', butdoctor told me 'a bonecondition resulting frommastectomy'. Now numb-ness round jaw, muscleweakness on right of face.Told 'faulty pituitarygland'.Noticed a lump on backand thought it was cancerbut GP thought 'anaemia',now diagnosed as 'kidneytrouble'.

Had right breast removeda year ago, then lump inleft breast removed. Nowpain in leg. Doctor thinks'slipped disc'. Feels betterbut does not know howlong she will stay better.

Cancer of stomach whichis inoperable.

Amputation right breasttwo years ago, later cystin left breast removed andhernia operation. Thenheaviness with pain in leg,felt strange all over, terriblcpain right rib. Not given aname for any illness (?fluidon lung ?clot movingupwards).

Told 'inflammation of thebowel'; also has arthritisand thyroid trouble.

Largelyaccurate

When asked about anyonewith a similar illness, saidher father had died ofcancer twenty years ago.She gave the impression ofknowing about her illnessfor some time and talkedabout it in a very relaxedway.

Largely Has been very relievedaccurate when told by doctors that

she was not suffering fromcancer although she saidher father had died ofkidney disease twenty-twoyears before. She wasconvincingly cheerful inher manner.

Largely At the end of the interviewinaccurate spoke at some length about

her concern over thepresent and future care ofher young children aged 6,4 and 2j years. Said shedid not think she hadmuch longer to live.

Accurate Had known his diagnosisfor some time and he hadderived a good deal ofsupport in discussing thisopenly with his familyand with the medical staffwho kept him informed ofevery aspect of his treat-ment. He said he did notknow how long his cancercould be contained but feltit important to have faithand hope. He worriedabout his family managingfinancially when he wasdead. He thought it un-likely he would be alive ayear from now.

Largely Appeared very anxious.inaccurate When asked if she knew

of anyone with a similarillness she said 'No' butadded that her mother had

e died of cancer of thestomach and her father ofcancer of the throat. Shesaid she was worryingabout her husband manag-ing on his own.

Accurate Said at the end of theinterview that she had beenvery worried about thenature of her illness, think-ing it was cancer but nowfelt reassured.

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66 JM Hunt, T D Stollar, D W Littlejohns, R G Twycross, D W Vere

Table III-continued Patient questionnaire: Diagnosis and insight

Patient Age Sex Diagnosis Patient's understanding Accuracy of Social worker's comnmentof illness understanding

K 58 M Squamous cell carcinoma Terrible headaches - Inaccurate Extremely tense when inter-(?primary site) lymph doctors cannot find the viewed; the only patientnode metastases, reason. not willing to complete thecarcinomatous neuromyo- questionnaire. He threwpathy, left retinal artery the analogue cards in thethrombosis air saying this was an

academic exercise whichhad no bearing on hispresent needs. He wasclearly desperately worriedabout the nature of hisiless.

L 49 F Rheumatoid ardtritis. Rheumatoid arthritis since Accurate This patient, whilst beingcollapse of head of right I960, staring in left knee in pain during first inter-femur then circulated round body. view, appeared relaxed

Having surgery - hip and confident of a success-replacement. ful outcome of the surgery.

M 65 F Hereditary haemorrhagic Telangiectasia since age Largely Spoke at length about hertelangiectasia, diverticular 35. Four months ago accurate symptoms but also aboutdisease of colon 'perforated intestine', now her family. She said she

stomach trouble - 'no had been very worriedgrowth but stomach goes about her.son who hadinto spasm'. been unemployed for

some months and hergranddaughter who was insome trouble. Both son andgranddaughter had in-herited her illness and shefelt responsible for theirmisfortune.

NURSE QUESTIONNAIRENone of the nurses refused to participate. Apartfrom two questions ('Are you happy with the carethe patient is receiving/you can give the patient ?'),the nurses had no difficulty in answering thequestions. However, their answers tended to bebrief and supplementary questions were necessaryto obtain more detailed information. They werehesitant about using the body diagram to describethe site(s) of the patients' pain.Twenty interviews relating to i6 patients were

completed with seven trained and six student nurses.Seven interviews related to six male patients andI3 to IO female patients. Generally, the nurses wereaware of the patients' diagnoses (table IV). Fivepatients were expected to die very soon (withinweeks); eight were 'terminal' but not expected todie in the immediate future; two patients (with non-malignant disease) were thought to have a fairlygood prognosis; in one case, the respondent did notknow. In 17 interviews the patient was said to be inpain. Of one patient, about whom two interviewswere completed, one nurse said he had pain and theother that he had not.

PainHalf the patients were thought to have severe or

Fig 3 Nurse questionnaire on severity and duration ofpain.

a In answer to the question about severity of pain twopatients were said to have no pain but in answer to thequestion about duration of pain they were said to haveoccasional pain.

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Patients with protracted pain: A survey conducted at The London Hospital 67

Table IV Nurse questionnaire: Patient details and diagnosis

DiagnosisPatient Age Sex

Doctor Nurse

B 68 F Myelomatosis, vertebral collapseC 86 F Carcinoma of renal pelvis, widespread

secondaries

D 53

G 35

I 64

K 58

L 49

M 65

N 65

F Carcinoma of lung, extensive invasion ofvertebra Ts

F Carcinoma of breast, secondary in glutealsoft tissues

F Previous carcinoma of breast, now venousthrombosis and pulmonary embolism

M Squamous cell carcinoma (?primary site)lymph node metastases, carcinomatousneuromyopathy, left retinal artery thrombosis

F Rheumatoid arthritis, collapse of head of rightfemur, right hip arthroplasty

F Hereditary haemorrhagic telangiectasia,diverticular disease of colon

M Carcinomatosis - primary site unknown butprobably stomach

0 57 F Carcinomatosis, primary site unknown;pemicious anaemia

P 62 M Carcinoma of bronchus, spinal secondariescausing spinal cord compression

Q 47 M Carcinoma of stomach, hepatic and othersecondaries

R 66 F Adenocarcinoma in ribs and right pleurlcavity

S 64 M Abdominal pain ?biliary; rheumatoid ardtritis,left carpal tunnel decompression, andsynovectomy

T 45 M Lymphosarcoma, splenic painU 62 F Carcinoma of breast, widespread bony

metastases

Myelomatosisi) Carcinoma of kidney, lung metastases,anaemia, haemoptyses2) Carcinoma of right kidney, secondaries inlungsCarcinoma of lung, cerebral metastases

Cancer, mastectomy, secondary in sacrum

Mastectomy - some time ago. Investigation ofpulmonary embolism ?metastasesWeight loss, adenocarcinoma of sebaceousglands

Rheumatoid arthritis, Felty's syndrome, rightarthroplastyI) Haemorrhagic disease2) Hereditary haemorrhagic telangiectasiaI) Carcinoma2) Enlarged liver, new growth, distendedabdomenI) Secondary carcinoma, unknown primary?stomach ?breast2) Carcinomatosis, lymph nodes in neck,primary in breast or stomach; perniciousanaemiaNumbness of legs ?cancer of abdomen

Cancer of stomach? secondaries in bone

Adenocarcinoma

Cholecystitis, rheumatoid arthritis,synovectomy

LymphosarcomaCarcinomatosis

very severe pain (fig 3). On two occasions it wasstated that the pain had decreased considerablybefore the interviews as the result of changes intreatment. Several nurses mentioned that thepatient did not complain ofpain, even though knownto have pain. These patients either admitted to painwhen asked directly or behaved in such a way thatindicated to the nurse that they had pain, forexample, by becoming withdrawn or by holding theaffected area.More than half the patients were said to be in

pain 'occasionally'. There were three differentreasons for this: i) some patients obtained tem-porary relief from analgesics but the pain returnedbefore the next drug round; 2) as some patients didnot complain spontaneously, their pain becameapparent only 'occasionally', that is, at drug rounds;3) the pain was intermittent, for example, only

occurring when turned in bed.Although the nurses felt they knew the severity

and duration of the patients' pain, they admittedthat some patients, who did not complain, wouldbe missed, though physical clues helped to reducethis likelihood. If patients said they were in pain thenurses accepted this, though, in one case, the nurseclassified the patient's pain level as 'severe' butremarked that the patient 'considers it very severe'.Analgesics were sometimes given between drugrounds, usually as a result of a request from apatient but, in most cases, questions about painlevels and administration of analgesics took placeon the drug rounds.

InsightMost patients were said to have some informationabout their illness (fig 4). Only four were thought to

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8-

IV1

0. 4-0o26 2 -

O _L04Patient Eknew,.

-I.'.verything A lot Something A little Nothing

Fig 4 Patients' insight according to nurses. On fouroccasions the nurse felt unable to comment.

have a great deal; these all had non-malignantdisease. Three patients were said to know nothingabout their illness; all had carcinoma. Elevenpatients were said to have obtained their informationfrom the doctor, although in some cases informationwas obtained from other sources as well, for example,books and relatives. One patient had not been toldbut was thought to have some knowledge becauseshe had had radiotherapy. No patient was said tohave obtained information from the nursing staff.

Fifteen patients were thought to have worries or

problems which caused anxiety. These were relatedmostly to physical signs and symptoms, which werecaused by their illness or treatment (eg, haemoptysis,constipation, diarrhoea, weight loss) and whenpossible these were relieved by treating the under-lying cause. It was not always clear whether theseproblems had been discussed either among thenurses or with the doctors. In the remaining cases,the problems were more psycho-social, for example,worry about confusion or domestic anxieties.

TreatmentIn all but two cases, when the nurses did not knowthe answer, the patients were said to be receivinganalgesics. Nine different drugs were mentioned:paracetamol (acetaminophen), aspirin, indome-thacin, Distalgesic, dihydrocodeine, pentazocine,pethidine (meperidine), phenazocine and dia-morphine. These were generally referred to bytrade names. Several patients received more thanone analgesic.

All the patients were said to obtain at least somerelief from their treatment (fig 5). In six cases itwas suggested that non-drug measures were being

8ii

0

Slight Moderate Considerable Complete

Fig 5 Nurse questionnaire on relief of pain.

used, for example, traction, physiotherapy, heatpads and positioning. Thus it appeared that onlyanalgesics were envisaged as the means of relievingpain, but, although the nurses did not often refer tonon-drug measures, some were part of the normalroutine and might not, therefore, be mentioned. Infour instances nurses felt that the medical care wasdefinitely unsatisfactory because: I) the doctors hadnot told R the nature of the illness (carcinoma) andthe reason for radiotherapy. The patient asked thenurses for information, which they were not allowedto give, and this put them in a difficult position.2) S had been kept in hospital unnecessarily waitingfor a test, although some of that time had been'filled in' with a minor operation. 3) Q neededstronger analgesics. 4) The relatives had been leftuninformed about Q's condition, despite askingto see the doctor and asking the nurses forinformation.

In one instance the nurse considered that thenursing care was unsatisfactory; she felt that 0needed to be nearer the nurses' station to allowcloser observation. The overall impression wasthat the nurses were reasonably happy with thecare being given even though some patients did nothave complete relief.

COMPARISON OF PATIENT AND NURSE QUESTIONNAIRESInformation about B, C, D, G, I, K, L and M wasobtained from both patients and nurses; two nurseswere interviewed about C and M. The bodydiagrams relating to these patients are shown infig 6. Marked discrepancies are seen in relation toI, L and M; in the case of G, it is reasonable toassume that either the patient or nurse confusedright with left. The nurse's error in relation to I issurprising in view of the diagnosis of pulmonaryembolism. On the other hand, the questionnaireswere not completed on the same day, and it ispossible that the patient's chest pain had resolved bythe time the nurse was interviewed. The discrepancyin relation to L is more apparent than real; thepatient did, in fact, complain of paraesthesiae, and,when answering another question, the nursespecifically mentiond hip pain (table V). With M,the error was made by only one of the two nursesinterviewed.

It was not possible to compare estimates of theseverity of pain as the patients used an analoguescale (o-ioo mm) and the nurses an interval scale(nil-mild-moderate-severe). Comparative estimatesof pain relief were, however, possible (table VI). Inonly two instances did the patient's and nurse'sestimate agree (C2, D); and, whereas in six thenurses overestimated the degree of relief, theyunderestimated only once (Ci). On the otheroccasion, they did not know (K).When asked if they had any other problems, five

out of seven patients expressed anxiety or concernabout leaving their families, whereas when asked a

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Patients with protracted pain: A survey conducted at The London Hospital 69

Patient Nurse

B~

X 4'i6f~~~~~~~~~~~~~~~-1-.13

01

D3-I;--~~~~~~L

JL,~~~~~~~~

07

G1

f t1~~~~~~~~~~~~~11Fig 6 Body diagrams relating to eight patients aboutwhom informnation was obtained both from the patientsthemselves and nurses. Two nurses were interviewed aboutC and M.

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70 JM Hunt, TD Stollar, D W Littlejohns, R G Tuycross, D W Vere

Nurse

"TIPS OFFINGERS"

05

""EVERYWHERE"

01

Fig 6 Body diagrams relating to eight patients aboutwhom information was obtained both from the patientsthemselves and nurses. Two nurses were interviewed aboutC and M.

Patient

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Patients with protracted pain: A survey conducted at The London Hospital 71

Table V Other problems: Comparison of answers from patients and nurses*

Patient Nurse

Bowels not opened that day. Did not want toleave her daughterLess 'regular'. Tight feeling round the neck.Worry about her son when she is goneNo family problems. Wants to get home

Worries about leaving children and outcomeof illnessConstipation. Worries about husbandmanaging on his own

Side effects of drugs

I) Haemoptysis2) Haemoptysis and cough very upsettingWorries about family and husband being alone,feels nothing being done, feels DXT wentwrongVomiting and nausea; some languagedifficultiesSwollen knee

(Discontinued interview) Worried about weight loss on previousadmission

No All associated with rheumatoid arthritis,eg, hip pain

Bowels - very tight, hard motions or diarrhoea. i) Bleeding, especially epistaxisNose bleeds. Worries about son and grand- 2) Nose bleeds frighten her as do the measuresdaughter taken to control them, eg, ice packs, nose

pinching, blood transfusions

*Nurse questionnaire: 'Does the patient have any other symptoms or problems which worry or upset him/her?Patient questionnaire: 'Do you have any other symptoas ?' and 'Do you have any other problems ?'

similar question, the nurses by and large referred toadditional physical symptoms (table V). On fouroccasions the nurses were unaware of the patient's

Table VI Pain relief in patients for whom informationis available from both patient* and nurse questiontairest

Patient Nurse

B Slight ConsiderableC Complete I) Considerable

2) CompleteD Moderate ModerateG Complete ConsiderableI Slight CompleteK None Don't knowL None ConsiderableM None i) Moderate

2) Slight

*Verbal rating scale: none/slight/moderate/completerelieftVerbal rating scale: none/slight/moderate/consider-able/complete relief.

insight into his condition; all four patients hadmalignant disease.On the other hand, when the diagnosis was non-

malignant, the patient was considered to know a lot(table VII).

Discussion

The patients' willingness to answer the questionsand their readiness to fill in the body diagramsdemonstrated that studies of this nature are feasible.Body diagrams could, in fact, be used routinely in

the assessment of patients with persistent pain, to

focus the physician's and the nurse's attention on

the site(s) of pain. This would encourage more

precise thinking and action about the cause of painand its relief. Visual analogue scales (VAS) were

used to assess severity of pain and other symptomsbecause they offer the patient greater freedom ofchoice and avoid many problems associated withinterval scales 4.No patient asked for analgesics except at drug

rounds, although some were in pain between them.Three patients said they did not want to get used topain killers, and H often went eight hours, insteadof four, without taking analgesics knowing that thepain would return during the second four-hourperiod but would not become intolerable and couldbe relieved completely 20 minutes after taking an

analgesic. He had known his diagnosis for sometime and appeared relaxed; he derived much supportfrom the ward staff's frank and continuing com-

munication about his illness and was also able totalk freely with his family.Some patients revealed more insight into the

nature of their illness in answer to indirect questionsat the end of the interview than to a direct questionat the beginning (table III). This may simply meanthat it took time for the interviewer to establishsufficient rapport for the patient to talk easily, albeitobliquely, about the seriousness of his conditionand its implications for himself and his family. Itindicates, however, that patients, particularly thosewith malignant disease, may know more about theirillness than is immediately apparent. Non-verbalmeans of communication, such as gestures andexpressions of distress, were also important. These

B

C

D

G

I

K

L

M

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72 JM Hunt, T D Stollar, D W Littlejohns, R G Twycross, D W Vere

Table VII Comparison of patients' knowledge of diagnosis and nurses' understanding of their knowledge

Patient NurseCause of pain

Directly accessible* Indirectly accessiblet

B Myeloma Largely accurate (Not applicable) 'I don't know'C Cancer Largely inaccurate 'I only worry about my I) Knows a little

son when I am gone' 2) Knows a littleD Cancer Largely inaccurate Only knows a little. May

know more because ofradiotherapy

G Cancer Largely inaccurate Worried about outcome 'I don't know'of illness

I Pulmonary embolism Largely inaccurate Spoke about relatives 'I don't know'dying of cancer

K Neuromyopathy Inaccurate 'I don't know'L Collapse of femoral head Accurate (Not applicable) A lotM Diverticular disease Largely accurate i) A lot

2) Almost everything

*Answer to question: 'Tell me about your illness'tAnswer to questions: 'Do you know anyone with a similar illness ?' and 'Have you any other problems outsideyour illness ?'

cannot easily be recorded in a questionnaire butmay have considerable relevance to the persistenceand severity of pain. For example, neither D norK could articulate the reason for their distress.The nurses were able to answer questions about

the condition of the patients and were happy togive their own assessment. They did not find it easyto indicate the site of pain on the body image,suggesting a difficulty in thinking of pain topo-graphically. Their answers were usually brief andrarely emphasized a specific nursing contribution.There was no indication of the kind of interventiondiscussed by McCaffery, who listed a number ofways in which a nurse may help to relieve painwithout the use of drugs, including spending timewith the patient, providing diversions, and promot-ing rest and relaxation5. Perhaps the lack of detailresulted from the way in which interviews werecarried out, but more probably the nurses attachedgreater importance to the use of analgesics than toother methods of elevating the pain threshold.The nurse, who spends most time with the

patient, has a vital role to play by ensuring that theprescriptions of the medical staff are carried out6.Yet, when analgesics were prescribed to be taken'as required', they were seldom or never used despitethe fact that the patients were known to have pain.The result was that few patients were free of pain.Great reliance was placed by the nurses on patientsasking for analgesics or admitting to needing themwhen asked, usually during the drug round. At thesame time, the nurses often mentioned that apatient 'does not ask', 'does not complain', 'neversays he needs anything' even when they 'knew' thepatient was in pain. When direct comparisons werepossible, the nurses tended to overestimate the

relief obtained (table V). It is possible that thenurses were unaware of, or unable to deal with,social, cultural and environmental factors whichprevent patients getting adequate relief. Forinstance, pain may be regarded by patients andnurses as an inevitable component of illness ornecessary if the patient is to adopt a sick role andfor the nurse to accept him in it. Such possiblemisconceptions and the practice ofconfining enquiryabout pain to drug rounds merit further investiga-tion.

Experience in special units has shown that, interminal malignancy at least, complete relief ispossible for most patients 7. 'As-required' prescrip-tions do not make pharmacological sense in chronicas opposed to acute pain8. Remittent pain was,however, common even in those who receivedanalgesics regularly every four hours (table II). Thisis a symptom of inadequate dosage and suggests thatdoctors do not appreciate fully that the effectiveanalgesic dose varies from patient to patient.Remittent pain, in particular, is an insolubleproblem in combination with inflexible attitudeson the part of doctors and nurses. Regular admini-stration of an individually determined dose of aneffective analgesic and a greater emphasis on non-drug means of elevating the pain threshold woulddo much to improve matters9 8.The survey was, of necessity, limited; relatively

few patients were seen and not all wards werevisited. We did not investigate in detail patients'insight into the implications of their illness or theiracceptance of it. Yet, with H, for example, it appearsthat his accurate insight into, and complete accept-ance of, his disorder had a considerable beneficialeffect on his mood which may, in turn, have

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Patients with protracted pain: A survey conducted a The London Hospital 73

reduced the severity of pain and the need foranalgesics6"10. We were not able to interview thedoctors, but the case history at the beginning of thisreport suggests that only longitudinal studies ofpatients with protracted pain would detect failureto relieve pain because of medical indecision ordelays in investigation and treatment.

AcknowledgementsWe thank the patients who agreed to be interviewed;Miss Culpeck, Divisional Nursing Officer, forgiving permission to involve the nurses; thenursing staff for providing data necessary for theselection of patients and for willingness to partici-pate; Miss Day, District Nursing Officer, and othersenior nurse admninistrators for their support. Wealso thank the consultants who permitted patientsunder their care to be interviewed, and Mrs MarySmith for preparing the figures and typing themanuscript.

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Dying, H M S O, London, I973.2 Melzack, R, The McGill pain questionnaire: Major

properties and scoring methods, Pain, I975, I,277-299.

3 Oakes, A E M, and Wigmore, H M, The LondonHospital prescription sheet, ournal of HospitalPharmacy, I968, 25, 177-I8I.

4 Aitken, R C B, Measurement of feelings using visualanalogue scales, Proceedings of the Royal Society ofMedicine, I969, 62, 989-993.

5 McCaffery, M, Nursing Management of the Patientwith Pain, Lippincott, Philadelphia, I972.

6 Hayward, J. Information - A Prescription against Pain;Royal College of Nursing, London, I975.

7 Saunders, C M, The challenge of terminal care. InScientific Foundations of Oncology, ed Symington, T,and Carter, R L, Heinemann, London, 1975.

8 Twycross, R G, Relief of terminal pain, British MedicalJournal, I975, 4, 2I2-2I4.

9 Marks, R M, and Sachar, E J, Undertreatment ofmedical inpatients with narcotic analgesics, Annalsof Internal Medicine, I973, 78, I73-I8I.

10Melzack, R, The Puzzle of Pain, Penguin Books Ltd,Harmondsworth, Middlesex, I973.

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