talking to patients about cancer

2
1244 IPPNW’S PEACE PRIZE SIR,—The award of the 1985 Nobel peace prize to International Physicians for the Prevention of Nuclear War (IPPNW) seems an appropriate time to pay attention again to the Lancet letters (March 30 and May 18) of Dr Sluis and his colleagues who made some critical comments about relations between IPPNW members and their respective governments. American members are independent of their government. Members from the Soviet Union and countries influenced by the USSR are another matter. I went to the 1985 IPPNW conference in Budapest and subsequently toured the Soviet Union as a guest of Soviet PPNW, and I agree with your Dutch correspondents that national PPNW committees in totalitarian countries cannot be considered as independent of these countries’ ruling parties. But that does not deny a fundamental role for IPPNW or the hope of something being accomplished by IPPNW, even within constrictions imposed by the highly diversified, even hostile, governments being represented. The common goal of every IPPNW member is survival. The world’s population become as patients to these physicians gathered together to do their best, in the manner allowed within their individual circumstances, to save their fellow men from the single most serious medical hazard existing anywhere. Doctors over the world would do this in the face of any threatening global epidemic. That the threat of death by nuclear holocaust is fraught with politics does not make preventive medicine less appropriate-but it does profoundly alter the methodology. Instead of fighting viruses and bacteria we have to combat modes of thinking that have lagged behind technology. The Soviet PPNW leader, Dr Chazov, is indeed a high-ranking member of the Soviet regime, but he is a physician too. He knows that the issue is critical and, I believe, that prevention is the only possible cure. His position makes him a strategically valuable influence. In the Soviet Union, influence rests at the top-to a tragic extent, exclusively at the top. So in the USSR there is a key party man who is in position to carry right to the top-to the Politburo and to the ear of Mr Gorbachov himself-the truth about nuclear weapons, about how whole new patterns of international behaviour are going to have to evolve. No IPPNW or Physicians for Social Responsibility (PSR) member is in Mr Reagan’s cabinet or has influence "at the top": I wish there was. I agree with your Dutch correspondents that doctors who think they can work for peace as medical men should do so with other doctors. But we must work with doctors in (and, through them, with the officials of) totalitarian states and military dictatorships. Because improved communication is the foundation of any programme of prevention members of IPPNW and their American affiliate PSR seek constantly to improve communication between physicians and citizens and between citizens and government, and to do so world-wide. Stanford, Mid-Peninsula & South Bay Chapter, Physicians for Social Responsibility, PO Box 2337, Stanford, California 94305, USA GARY LAPID, President emeritus REPORTING ADVERSE DRUG REACTIONS SIR,—The debate in your correspondence columns (Oct 12, p 836) about delays between the observation of adverse drug reactions and the publication of case-reports prompts us to report our experience with two sources of long delay that have not yet been mentioned. In your Aug 31 issue (p 499) Dr Flechet and colleagues report a case offatal toxic epidermal necrolysis (TEN) attributed to isoxicam and claim that this was the first published case of such a reaction. However, in October, 1984, we sent you a letter reporting a case of TEN attributed to isoxicam and observed in September, 1984. This letter was refused because of pressure on space in your correspondence columns. So there was an 11 month delay between the first observation of a very severe skin reaction to isoxicam and the first publication (from another team). During these 11 months many other cases of severe skin reactions were attributed to isoxicam in France, and last month the drug was withdrawn from the French market. Clearly something was wrong with the alerting function of published case-reports. Deciding whether to accept or reject reports submitted to medical journals is very difficult and strict objectivity may be an unrealistic goal. However, there is an important objective difference between our report and the one you published. We described, besides the one case attributed to isoxicam, four instances of TEN attributed to piroxicam; only one case of piroxicam-induced TEN had been published at that time. Oxicam derivatives seem to carry a high risk of severe skin reactions. Our paper reporting drug causes of sixty cases of TEN (including the four attributed to piroxicam) has been accepted by a French journal but publication has been delayed for several months by the intervention of the company marketing piroxicam in France. This is another reason why reports of adverse drug reactions may be delayed, and your warning (Oct 12, p 812) about the possibility of suppression of publication by manufacturers prompted us to record our experience with this source of delay. Dermatology Service, Hôpital Henri Mondor, Université Paris Val de Marne, 94010 Creteil, France J. C. ROUJEAU J. C. GUILLAUME J. REVUZ R. TOURAINE 1 Stern RS, Bigby M An expanded profile of cutaneous reactions to non steroidal antiinflammatory drugs: Reports to a speciality-based system for spontaneous reporting of adverse reactions to drugs. JAMA 1984; 252: 1433-37. TALKING TO PATIENTS ABOUT CANCER SIR,—One must welcome any activity or organisation which is promoting better understanding between doctors and patients, but should not the inception of the British Association of Cancer United Patients (BACUP) (Nov 9, p 1080) cause us serious concern that, as doctors, we must be failing lamentably? Patients are still referred to our general surgical unit with established diagnoses of cancer who have never had the subject broached, and while the sudden realisation at this late stage of their investigation and management may be a terrible shock to them, I do not think that this is the most harmful aspect of this secretive and dishonest approach. We have worked for many years in a surgical unit on the basis that honesty, combined with a kindly approach to the patient and the patience to repeat carefully information to frightened people who may not be in a state to take it in readily, is the best policy. Cancer, or malignancy, is mentioned to the patient-using those words and not euphemisms-as soon as it is thought a likely possibility. For instance, if a patient presents.with an altered bowel habit and a barium enema is suggested, the patient is told why it is important to investigate the symptoms, and this includes the information that cancer is a possibility. If a patient presents with a picture which is not suggestive of cancer but where it is a remote possibility, we explain this truthfully to the patient if he asks why he is being investigated. I believe the advantages of this approach are many. It will be said that the patient may begin worrying sooner than otherwise, but I doubt if this is really true. Patients can usually sense when doctors are holding back information, and it is then that the worst sort of worry, which is associated with a lack of trust, begins. Worrying is, after all, rehearsal for action or for coping with a problem when it arrives, and I would have thought that the earlier it starts without the weight of a sudden, definite statement, perhaps the better the patient is able to cope. When the bad news is given to the patient, the worry that has occurred may mean that although the patient is disappointed, he is so much better able to cope with it that for a moment or two the definite information is a relief and he is able to concentrate on grasping the outlines of the treatment or management plan which are being given to him. The greatest advantage of all, however, is that the patient experiences an honest approach from his first contact with the team and thus learns to trust the doctors. If his presentation is the beginning of a long illness or ordeal, which with recurrence and other problems in cancer is always likely, the establishment of this trust at the beginning of the relationship between the patient and his doctors can only help both in the long term. It would be interesting

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Page 1: TALKING TO PATIENTS ABOUT CANCER

1244

IPPNW’S PEACE PRIZE

SIR,—The award of the 1985 Nobel peace prize to InternationalPhysicians for the Prevention of Nuclear War (IPPNW) seems anappropriate time to pay attention again to the Lancet letters (March30 and May 18) of Dr Sluis and his colleagues who made somecritical comments about relations between IPPNW members andtheir respective governments. American members are independentof their government. Members from the Soviet Union and countriesinfluenced by the USSR are another matter. I went to the 1985IPPNW conference in Budapest and subsequently toured the SovietUnion as a guest of Soviet PPNW, and I agree with your Dutchcorrespondents that national PPNW committees in totalitariancountries cannot be considered as independent of these countries’ruling parties. But that does not deny a fundamental role forIPPNW or the hope of something being accomplished by IPPNW,even within constrictions imposed by the highly diversified, evenhostile, governments being represented.The common goal of every IPPNW member is survival. The

world’s population become as patients to these physicians gatheredtogether to do their best, in the manner allowed within theirindividual circumstances, to save their fellow men from the singlemost serious medical hazard existing anywhere. Doctors over theworld would do this in the face of any threatening global epidemic.That the threat of death by nuclear holocaust is fraught with politicsdoes not make preventive medicine less appropriate-but it doesprofoundly alter the methodology. Instead of fighting viruses andbacteria we have to combat modes of thinking that have laggedbehind technology.The Soviet PPNW leader, Dr Chazov, is indeed a high-ranking

member of the Soviet regime, but he is a physician too. He knowsthat the issue is critical and, I believe, that prevention is the onlypossible cure. His position makes him a strategically valuableinfluence. In the Soviet Union, influence rests at the top-to a tragicextent, exclusively at the top. So in the USSR there is a key partyman who is in position to carry right to the top-to the Politburo andto the ear of Mr Gorbachov himself-the truth about nuclear

weapons, about how whole new patterns of international behaviourare going to have to evolve. No IPPNW or Physicians for SocialResponsibility (PSR) member is in Mr Reagan’s cabinet or hasinfluence "at the top": I wish there was.

I agree with your Dutch correspondents that doctors who thinkthey can work for peace as medical men should do so with otherdoctors. But we must work with doctors in (and, through them, withthe officials of) totalitarian states and military dictatorships.Because improved communication is the foundation of anyprogramme of prevention members of IPPNW and their Americanaffiliate PSR seek constantly to improve communication betweenphysicians and citizens and between citizens and government, andto do so world-wide.

Stanford, Mid-Peninsula & South Bay Chapter,Physicians for Social Responsibility,PO Box 2337,Stanford, California 94305, USA

GARY LAPID,President emeritus

REPORTING ADVERSE DRUG REACTIONS

SIR,—The debate in your correspondence columns (Oct 12, p 836)about delays between the observation of adverse drug reactions andthe publication of case-reports prompts us to report our experiencewith two sources of long delay that have not yet been mentioned.

In your Aug 31 issue (p 499) Dr Flechet and colleagues report acase offatal toxic epidermal necrolysis (TEN) attributed to isoxicamand claim that this was the first published case of such a reaction.However, in October, 1984, we sent you a letter reporting a case ofTEN attributed to isoxicam and observed in September, 1984. Thisletter was refused because of pressure on space in yourcorrespondence columns. So there was an 11 month delay betweenthe first observation of a very severe skin reaction to isoxicam andthe first publication (from another team). During these 11 monthsmany other cases of severe skin reactions were attributed to isoxicamin France, and last month the drug was withdrawn from the Frenchmarket. Clearly something was wrong with the alerting function ofpublished case-reports.

Deciding whether to accept or reject reports submitted to medicaljournals is very difficult and strict objectivity may be an unrealisticgoal. However, there is an important objective difference betweenour report and the one you published. We described, besides the onecase attributed to isoxicam, four instances of TEN attributed topiroxicam; only one case of piroxicam-induced TEN had beenpublished at that time. Oxicam derivatives seem to carry a high riskof severe skin reactions. Our paper reporting drug causes of sixtycases of TEN (including the four attributed to piroxicam) has beenaccepted by a French journal but publication has been delayed forseveral months by the intervention of the company marketingpiroxicam in France. This is another reason why reports of adversedrug reactions may be delayed, and your warning (Oct 12, p 812)about the possibility of suppression of publication bymanufacturers prompted us to record our experience with thissource of delay.

Dermatology Service,Hôpital Henri Mondor,Université Paris Val de Marne,94010 Creteil, France

J. C. ROUJEAUJ. C. GUILLAUMEJ. REVUZR. TOURAINE

1 Stern RS, Bigby M An expanded profile of cutaneous reactions to non steroidalantiinflammatory drugs: Reports to a speciality-based system for spontaneousreporting of adverse reactions to drugs. JAMA 1984; 252: 1433-37.

TALKING TO PATIENTS ABOUT CANCER

SIR,—One must welcome any activity or organisation which ispromoting better understanding between doctors and patients, butshould not the inception of the British Association of Cancer UnitedPatients (BACUP) (Nov 9, p 1080) cause us serious concern that, asdoctors, we must be failing lamentably?

Patients are still referred to our general surgical unit withestablished diagnoses of cancer who have never had the subjectbroached, and while the sudden realisation at this late stage of theirinvestigation and management may be a terrible shock to them, I donot think that this is the most harmful aspect of this secretive anddishonest approach.We have worked for many years in a surgical unit on the basis that

honesty, combined with a kindly approach to the patient and thepatience to repeat carefully information to frightened people whomay not be in a state to take it in readily, is the best policy.Cancer, or malignancy, is mentioned to the patient-using those

words and not euphemisms-as soon as it is thought a likelypossibility. For instance, if a patient presents.with an altered bowelhabit and a barium enema is suggested, the patient is told why it isimportant to investigate the symptoms, and this includes theinformation that cancer is a possibility. If a patient presents with apicture which is not suggestive of cancer but where it is a remotepossibility, we explain this truthfully to the patient if he asks why heis being investigated.

I believe the advantages of this approach are many.It will be said that the patient may begin worrying sooner than

otherwise, but I doubt if this is really true. Patients can usually sensewhen doctors are holding back information, and it is then that theworst sort of worry, which is associated with a lack of trust, begins.Worrying is, after all, rehearsal for action or for coping with aproblem when it arrives, and I would have thought that the earlier itstarts without the weight of a sudden, definite statement, perhapsthe better the patient is able to cope.When the bad news is given to the patient, the worry that has

occurred may mean that although the patient is disappointed, he isso much better able to cope with it that for a moment or two thedefinite information is a relief and he is able to concentrate on

grasping the outlines of the treatment or management plan whichare being given to him.The greatest advantage of all, however, is that the patient

experiences an honest approach from his first contact with the teamand thus learns to trust the doctors. If his presentation is thebeginning of a long illness or ordeal, which with recurrence andother problems in cancer is always likely, the establishment of thistrust at the beginning of the relationship between the patient and hisdoctors can only help both in the long term. It would be interesting

Page 2: TALKING TO PATIENTS ABOUT CANCER

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to know what proportion of doctors do believe in an honest

approach to their patients, and what proportion of those use theproper terms rather than euphemisms such as growth or tumour,which many patients do not realise are synonyms when used forcancer.

149 Harley Street,LondonW1N2DH JOHN SQUIRE KIRKHAM

MISCARRIAGE OR ABORTION

SIR,-We support Professor Beard and his colleagues’ suggestion(Nov 16, p 1122) that doctors-like their patients-should use theword "miscarriage" for a spontaneous abortion, thus reducing thedistress caused to couples who have a miscarriage. Statisticalconfusion in Parliament and public debate would also be reduced.In February this year Mr Nicholas Winterton, MP, an opponent ofabortion, asked how many deaths were due to abortion. TheMinister of Health gave the unintentionally misleading reply that in1983 in England and Wales there were eight abortion deaths but didnot go on to say that all eight were due to miscarriage and none toinduced abortion.

Brook Advisory Centres,153a East Street,London SE17 2SD

CAROLINE WOODROFFE,General Secretary

DOGS AND PAGET’S DISEASE

SIR,-Dr O’Driscoll and Dr Anderson report that ownership ofdogs in the past was more common among 50 patients with Paget’sdisease than among 50 age and sex matched diabetic controls (Oct26, p 919). This case-control comparison was done in Manchester.They suggest that "a canine virus (possibly canine distemper) mightbe the primary infective agent" in the disease.We have done two case-control studies-one in Lancaster, UK,

the town with the highest recorded prevalence of Paget’s disease inany country, and the other in Siena, Italy, which has a low

prevalence. Questions about household pets during childhoodwere included in the interviews. In Lancaster 37 cases were

compared with 74 controls matched for sex and age to within fiveyears. Cases and controls were identified from a sequential sampleof stored radiographs in a general hospital. In Siena 27 cases from ahospital register were matched with two sets of controls, onecomprising patients attending a rheumatology outpatient clinic andthe other inpatients on medical wards. Other than for the inpatientcontrols in Siena all the interviews were at the subjects’ homes.The table shows the numbers of cases and controls who reported

having had a dog as a household pet during childhood. Only case-control sets in which the case and at least one control was traced andcould reply to the question are included. Matched analysis by theMantel and Haenszel method was used. 55% of subjects (cases andcontrols) in Lancaster and 45% in Siena had had a dog as a

household pet during childhood. The differences between the casesand controls were small and not significant. Nor were theredifferences in exposure to other household pets, including cats andbirds. These findings do not support those from Manchester.Laboratory evidence in support of the canine distemper

hypothesis has been sought in the past but not found.2 Theprevalence of Paget’s disease is higher in Britain than in any otherWestern European country.’ Only in France do the rates approachthose in Britain. However, the dog population in Britain isestimated as 10-4 per 100 people, while values for eleven otherEuropean countries range from 17-2 in France to 5-3 inSwitzerland.3 The value of 9-6 6 per 100 in Sweden is of particularinterest in view of the extreme rarity of Paget’s disease there.

NUMBERS OF CASES OF PAGET’S DISEASE AND CONTROLS IN

LANCASTER AND SIENA WHO HAD DOGS AS PETS DURING CHILDHOODI ! I

We suggest that no firm conclusions be drawn from theManchester study until there is additional evidence, including thatfrom a large, adequately controlled case-control study in anotherarea.

MRC Environmental Epidemiology Unit,University of Southampton,Southampton General Hospital,Southampton S09 4XY

D. J. P. BARKERF. M. DETHERIDGE

1 Detheridge FM, Guyer PB, Barker DJP. European distribution of Paget’s disease ofbone Br Med J 1982, 285: 1005-08

2 MRC Environmental Epidemiology Unit. Conference report no 6. The aetiology ofPaget’s disease of bone Southampton, 1984.

3 Anderson RS. Trends in pet populations In: Thrushfield MV, ed. Proceedings ofSociety for Veterinary Epidemiology and Preventive Medicine, 1983.

SIR,-Although Dr O’Driscoll and Dr Anderson’s results showthat dog ownership was commoner in patients with Paget’s diseasethan in diabetic patients, it is premature to suggest from these

findings that the primary infective agent might be a canine virus.O’Driscoll and Anderson note that the survey provides onlycircumstantial evidence to implicate dogs in the cause of Paget’sdisease and stress the need for further studies. The lay press,however, tends to be less discerning; for example, The Trmes ofNov v8, 1985, under the heading of "Distemper jabs to help the family",reported that dogs were probably carriers of Paget’s disease. Suchreporting only serves to provide ammunition (irrespective ofwhether it turns out to be live or blank) for anti-dog groups andtends to alienate members of the veterinary profession who are facedwith distraught dog owners.

It would be of interest to survey the incidence of Paget’s disease inthe older veterinarians. Such veterinary surgeons will have beenexposed to sick dogs far more than any other group and at timeswhen immunisation of dogs against distemper was either notavailable or less widely used. It would be expected, therefore, thatveterinary surgeons should be over-represented amongst patientswith Paget’s disease. I know of no colleague with Paget’s disease.

Department of Veterinary Surgery,University of Bristol,Langford, Bristol BS18 7DU

P. E. HOLT,Chairman, British Small Animal

Veterinary Association ScientificCommittee

METHYL ISOCYANATE: THIOSULPHATE DOES NOTPROTECT

SIR,-Various sourcesl-3 suggest that, after last December’s

methyl isocyanate (MIC) disaster at Bhopal, in India,4 there is

controversy about cyanide poisoning in some of the victims. It

has been claimed that sodium thiosulphate (Na2S203) was

therapeutically effective. However, no hydrogen cyanide seems tohave been released with MIC and it is unlikely that MIC ismetabolised to or leads to the release of cyanide in the body. On theother hand, Na2S203 could have therapeutic effects apart from itsaction as a cyanide antagonist. No published work throws light onthis important issue.While studying rats exposed by inhalation to MIC5 we evaluated

the effects ofNa,S,0 on the clinical evolution and daily urinarythiocyanate excretion during one week after exposure to MIC.Eighteen male LAC-P rats of 130-150 g initial body weight wereused. Twelve rats (two groups of six) were statically exposed for 1 hin a 50 litre glass tank to MIC at an initial concentration of 0-25 5mg/1 (about 100 ppm). This corresponds to a time-weighted averagelevel of between 20 and 30 ppm, causing extensive damage (mainlyto the airway epithelium) and leading to severe respiratory distress,but no acute deaths.5 Four of these rats received an intraperitonealinjection of 0-25 ml Na2S203 in saline (673 mol per rat) 15 minbefore exposure to MIC and then daily until the sixth day afterexposure; the other eight rats similarly received injections of 0 - 2 5ml saline. Six rats were left unexposed to MIC, three receivingNa2S203 and three saline injections. After the exposure, the ratswere housed individually in metabolism cages for 24 h collection ofurine (on 50 1 gentamicin 10 mg/ml) and they were weighed daily.Survivors were killed 7 days after exposure, blood was taken, and