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Institute of Medical Ethics p?ESIDENT sir Douglas Black VICE pRESIDENTS professor G R Dunstan professor Sir Raymond Hoffenberg MIr R Sells professor R B Welbourn GoVERNING BODY professor M Brazier Brendan Caliaghan Allan Chappell Colin Currie Donald Evans Raanan Gillon (Editor, Journal of Mfedical Ethics) professor Roger Higgs Tony Hope Professor Bryan Jennett Professor D Morton Professor Thomas Oppk (Chairman) Professor Richard West (General Secretary) Professor Jenifer Wilson-Barnett Director of Research and Scottish Director Kenneth Boyd Research Fellow Hazel McHaffie IME Amulree Feliow The Very Reverend Edward Shotter Dean of Rochester Honorary Research Associates Dr Andrew Fraser Dr Jane Smith Miss Ursula Gallagher Ann Lloyd, Technical Editor, Journal of Medical Ethics Maureen Bannatyne, EditorialAssistant The Institute of Medical Ethics is an independent, non-partisan organisation for the multidisciplinary study of medico-moral issues raised by the practice of medicine, and concerned with research, edu- cation and information. It is financed by grants and donations from public and private sources. The institute aims to help improve the quality of both professional and public discussion of medico-moral questions; to promote the study of medical ethics; to promote high academic standards for this ever developing subject; to encourage a multidisciplinarv approach to discussion of the consequences of clinical practice; to stimulate research into specific problems, and to remain non-partisan and independent of all interest groups and lobbies. Institute reports include: The Ethics of Resource Allocation in Health Care by Kenneth Boyd, and Dilemmas of Dying by Ian Thompson, Edinburgh University Press (both 1979); Medical Research with Children: Ethics, Law and Practice by Richard Nicholson, and Lives in the Balance: the Ethics of Using Animals in Biomedical Medical Research by Jane Smith and Kenneth Boyd, Oxford University Press (1986 and 1991); Life Before Birth by Kenneth Boyd, Brendan Callaghan and Edward Shotter, SPCK (1986); Teaching and Learning Nursing Ethics by Ursula Gallagher and Kenneth Boyd, Scutari (1991) and Sorbona Milan (1993); The Pond Report on the Teaching of Medical Ethics edited by Kenneth Boyd, and The Care of Patients with HIV and AIDS: A Survey of NVurse Education in the UK, by Hazel McHaffie, published directly for the institute (1987 and 1994). Shorter institute reports include: Assisted Death, Lancet, 1990; AIDS, ethics and clinical trials, British Medical Journal, 1992; AIDS and the ethics of medical care and treatment, Quarterly Journal of Medicine, 1992; Advance directives: partnership and practicalities, British J7ournal of General Practice, 1993; Implications of HIV infection and AIDS for medical education, Medical Education, 1994; and Prolonging life and allowing death: infants, ournalofMedicalEthics, 1995. The institute derives from the London Medical Group, a student group for the study of ethical issues raised by the practice of medicine which, beginning in 1963, arranged a comprehensive programme of lectures and symposia on such issues. Similar groups associated with the institute are now established in university teaching hospitals throughout the UK. Professor Richard West General Secretary, IME Medical Postgraduate Department University of Bristol Frenchay Hospital, Frenchay Park Road, Bristol BS16 1LE Dr Kenneth Boyd Director of Research and Scottish Director, IME Department of Medicine Royal Infirmary of Edinburgh Lauriston Place, Edinburgh EH3 9YW Published by the BMJ Publishing Group on behalf of the Institute of Medical Ethics and the British Medical Association. Typesetting by Bedford Typesetters Ltd, Bedford. Printed in Great Britain by Derry & Son Ltd, Nottingham. The Institute of Medical Ethics is a registered charity, No 261876. Second class postage paid, Rahway N J Postmaster: send address changes to: Journal of Medical Ethics cdo Mercury Airfreight International Lid Inc, 2323 Randolph Avenue, Avenel. NJ 07001, USA.
Transcript
Page 1: Institute of MedicalEthics · organisation for the multidisciplinary study of medico-moral issues raised bythe practice ofmedicine, andconcernedwithresearch, edu-cation and information.

Institute of Medical Ethics

p?ESIDENTsir Douglas BlackVICE pRESIDENTS

professor G R Dunstanprofessor Sir Raymond Hoffenberg

MIr R Sellsprofessor R B Welbourn

GoVERNING BODY

professorM Brazier

Brendan CaliaghanAllan ChappellColin Currie

Donald Evans

Raanan Gillon(Editor, Journal of Mfedical Ethics)professor Roger Higgs

Tony HopeProfessor Bryan Jennett

Professor D Morton

Professor Thomas Oppk(Chairman)Professor Richard West(General Secretary)Professor Jenifer Wilson-Barnett

Director ofResearch and ScottishDirectorKenneth BoydResearch FellowHazel McHaffie

IME Amulree FeliowThe Very Reverend Edward ShotterDean of Rochester

Honorary Research AssociatesDr Andrew FraserDr Jane SmithMiss Ursula Gallagher

Ann Lloyd, Technical Editor, Journal ofMedical EthicsMaureen Bannatyne, EditorialAssistant

The Institute of Medical Ethics is an independent, non-partisanorganisation for the multidisciplinary study of medico-moral issuesraised by the practice of medicine, and concerned with research, edu-cation and information. It is financed by grants and donations frompublic and private sources.

The institute aims to help improve the quality of both professionaland public discussion of medico-moral questions; to promote thestudy of medical ethics; to promote high academic standards for thisever developing subject; to encourage a multidisciplinarv approach to

discussion of the consequences of clinical practice; to stimulateresearch into specific problems, and to remain non-partisan andindependent of all interest groups and lobbies.

Institute reports include: The Ethics of Resource Allocation in HealthCare by Kenneth Boyd, and Dilemmas of Dying by Ian Thompson,Edinburgh University Press (both 1979); Medical Research withChildren: Ethics, Law and Practice by Richard Nicholson, and Lives in

the Balance: the Ethics of Using Animals in Biomedical Medical Researchby Jane Smith and Kenneth Boyd, Oxford University Press (1986 and1991); Life Before Birth by Kenneth Boyd, Brendan Callaghan andEdward Shotter, SPCK (1986); Teaching and Learning Nursing Ethicsby Ursula Gallagher and Kenneth Boyd, Scutari (1991) and SorbonaMilan (1993); The Pond Report on the Teaching ofMedical Ethics editedby Kenneth Boyd, and The Care of Patients with HIV and AIDS: ASurvey of NVurse Education in the UK, by Hazel McHaffie, publisheddirectly for the institute (1987 and 1994).

Shorter institute reports include: Assisted Death, Lancet, 1990; AIDS,ethics and clinical trials, British Medical Journal, 1992; AIDS and theethics of medical care and treatment, Quarterly Journal of Medicine,1992; Advance directives: partnership and practicalities, BritishJ7ournal of General Practice, 1993; Implications of HIV infection andAIDS for medical education, Medical Education, 1994; and Prolonginglife and allowing death: infants, ournalofMedicalEthics, 1995.

The institute derives from the London Medical Group, a studentgroup for the study of ethical issues raised by the practice of medicinewhich, beginning in 1963, arranged a comprehensive programme oflectures and symposia on such issues. Similar groups associated withthe institute are now established in university teaching hospitalsthroughout the UK.

Professor Richard WestGeneral Secretary, IMEMedical Postgraduate DepartmentUniversity of BristolFrenchay Hospital, FrenchayPark Road, Bristol BS16 1LE

Dr Kenneth BoydDirector of Research andScottish Director, IMEDepartment ofMedicineRoyal Infirmary of EdinburghLauriston Place, Edinburgh EH3 9YW

Published by the BMJ Publishing Group on behalf of the Institute of Medical Ethics and the British Medical Association.Typesetting by Bedford Typesetters Ltd, Bedford. Printed in Great Britain by Derry & Son Ltd, Nottingham.The Institute of Medical Ethics is a registered charity, No 261876.

Second class postage paid, Rahway N J Postmaster: send address changes to:Journal ofMedical Ethics cdo Mercury Airfreight International Lid Inc, 2323 Randolph Avenue, Avenel. NJ 07001, USA.

Page 2: Institute of MedicalEthics · organisation for the multidisciplinary study of medico-moral issues raised bythe practice ofmedicine, andconcernedwithresearch, edu-cation and information.

The journal of the Institute of Medical EthicsThe JournalofMedcal E'thics was established in 1975, with a multidisciplinary editorial board, to promote the study of contemporary medicOmoral problems. The editorial board has as its aims the encouragement of a high academic standard for this ever-developing subject and theenhancement of professional and public discussion. The journal is published six times a year and includes papers on all aspects of health careethics, analyses ethical concepts and theorics and features case conferences and comment on clinical practice. Intermittent series focus on

the Teaching of medical ethics; on the medico-moral problems directly experienced by health care workers (At the coalface; on the

pursuit of arguments prompted bv papers in the journal (Debate); on medical ethics in literature (Medical ethics and literature), and o

briefly argued often unorthodox opinions related to medical ethics (Point of view). 'I'he journal also contains book reviews and letters

Editorial BoardF.D)ITOR:Professor Raanan Gillon, general practitioner and philosopher,lmperial College, London UniversityCONSULTING EDITORS:Sir Douglas Black, physician, Manchester University, UKProfessor Robin Dowunie, moral philosopher, Glasgow University, UKCHAIRMAN, EDITORIAL BOARD:Professor Thomas Oppe, paediatrician, St Mary's Hospital MedicalSchool, London UKEDITORIAI. ASSOCIATE:Dr Tony Hope, psychiatrist, leader, Oxford Practice Skills Project,Oxford University, UKDr Susan Bewley, Director of Obstretrics, St Thomas's Hospital,London, UKDr Kenneth Boyd, historian, chaplain. University of Edinburgh, UKProfessor Margaret Brazier, medical lawycr, Manchester Universitv,UKProfessor Anthony Culyer, Professor of Economics, Universitv ofYork, UKLouise de Raeve, nurse, philosopher, University College, Swansea, UKDr Donna Dickenson, medical ethicist and philosopher, The OpenUniversity, Milton Keynes, UKProfessorJohn Haldane, philosopher, University of St Andrews, UKProfessorJohn Hams, philosopher, Manchester University, UKProfessor Roger Higgs, general practitioner, and Head of Departmentof General Practice, King's College, IAondon, UKProfessor MargotJefferys, medical sociologist, University of London,UKRt Hon Sir Patrick Nairne, Chair of the Nuffield Council on BioethicsRabbiJulia Nieuberger, Chair, Camden Community Health Council,London, UKDr Allyson Polloch, public health physician, St George's Hospital,London, UKProfessor Alain Pompidou, pathologist, member of European parlia-ment, FranceDr Octavi Quintana, Chairman, Council of European SteeringCommittce for Bioethics, Madrid, SpainThe Very Reverend Edward Shotter, Dcan of Rochester, Institute ofMedical Ethics Amulree Fellow, UKProfessor Robert Williamson, molecular biochemist, MurdochInstitute, Royal Children's Hospital, Melbourne, AustraliaEX-OFFICiO:Dr Richard Smith, editor, British Medical Journal, UKProfessor Richard West, postgraduate medical dean, BristolUniversitv, UK, general secretary, Institute of Medical Ethics, UKAnn Lloyd, Technical Editor, JMEMaureen Bannatyne, Editorial Assistant, JMNlE

Editorial Advisory BoardProfessor Kare Berg, physician, Chairman, Institute of MedicalGenetics, University of Oslo, NorwayDr Bela Blasszauer, medical lawyer, Medical University of Pecs.HungaryDr Mudr Martin Bojar, neurologist, Charles University, Prague,Czech Republicjudge Christian Byk, medical lawyer and magistrate, Paris, FranceProfessor Alastair Campbell, theologian, Director, Centre forBioethics, University of Otago, New ZealandDr Roger Crisp, philosopher, St Anne's College, Oxford University, UKProfessor Fernando da Rocha, philosopher, Universidade Federal doRio Crande do Sul, Brazil

Dr Dolores Dooley, philosopher, University College, Cork, IrelandProfessor H E Emson, pathologist, Royal University Hospital,Saskatoon, CanadaDr Calliope CS Farsides, philosopher, University of Keele, UKMs Tina Garanis-Papadotos, medical lavwer, Athens School ofPublic Health, GreeceDr Shimon Glick, physician, Ben Gurion University of the Negev, IsraelProfessor Zaki Hasan, physician, Vice Chancellor, Baqai Unisersity,Karachi, PakistanDr Nieville Hicks, medical sociologist, University of Adelaide, AustraliaMsJenniferjackson, philosopher, Director, Centre for Business and

Professional Ethics, University of Leeds, UKProfessor Albert Jonsen, ethicist and historian, Universitv of

Washington, USAProfessor Ian Kennedy, President, Centre for Medical Law' and

Ethics, King's College, London, UKProfessor Rihito Kmura, lawyer, Waseda Universitv, JapanDr Paula Kohkonen, law-ver, Director of the National Board of

Medicolegal Affairs, Helsinki, FinlandDr Simon Lundy, general practitioner, London, UKProfessor Ruth Macklin, philosopher and ethicist, Albert Einstein

College of Medicine, New York, USADr Maureen MacMillan, nurse, Edinburgh, UKProfessor Malcolm Macnaughton, obstetrician/gynaecologistGlasgow University, UKProfessor Maurizio Mori, philosopher, Consulta di Bioetica diMilano, ItalyProfessor Ben Osuntokun, physician, University of Ibadan. NigeriaDr Naomi Pfeffer, medical sociologist, Universitv of North London. UK

Dr Sashha Popova, social scientist, Departmcnt of Social Medicine andPublic Health. Sofia, BulgariaProfessor Qui Ren-Zong, philosopher, Institute of Philosophy,Beijing, ChinaDrjanet Radcliffe-Richards, philosopher, Open University, MiltonKeynes, UKProfessor Pinit Ratanakul, physician, philosopher, MahidolUniversity, Bangkok, ThailandDr Stella Reiter-Theil, physician, Akademie fur Ethik in der Medizin,Gcorg-August-Universitat, Goettingen, GermanyProfessor Povl Riis, physician, Herlev University, Chair of NationalEthics Committee, DenmarkProfessor Daniel Serrao, physician, University of Porto MedicalSchool, PortugalMfr Robert Sells, transplant surgeon, Director, Renal Transplant Unit,Roval Liverpool University Hospital, UKProfessor Gamal Serour, obstetrician/gynaecologist, IntemationalIslamic Center for Population Studies and Research, Cairo, EgyptProfessor WShannon, general practitioner, Royal College of Surgeonsof Ireland Medical School, Dublin, IrelandProfessor Mark Siegler, physician and ethicist, University of ChicagoHospitals, Illinois, USAProfessorJack Stanley, philosopher. Lawrence University, Appleton,Wisconsin, USAMsJulie Stone, medical lawyer, Hempsons, London, UKDr Per Sundstrom, freelance writer in medical ethics and philosophy,SwedenProfessorJuan Carlos Tealdi, physician and philosopher, FundacionMainetti, Buenos Aires, ArgentinaProfessor Henk Ten Have, physician and philosopher, CatholicUniversitv of Nijmegen, the NetherlandsProfessor Dr Guido Van Steendam, philosopher, InternationalForum for Biophilosophy, BelgiumProfessor Francisco Vilardell, physician and president of CIOMS,Barcelona, SpainProfessor Jenifer Wilson-Barnett, nurse, Head of Department ofNursing Studies, King's College London, UK

Notice to subscribers'I'he Journal of Medical Ethics is published six times a year. The annual subscription rate is £C105 ($165) for institutions and £80.00 ($126)for personal subscribers for all countries. 'l'he rate in the USA for subscribers who order directly from the publishers is $158 for institutionsand $126 for pcrsonal subscribers, payable by cheque or the chargc/credit cards listed below. Payment for all other subscriptions may bemade by VISA, Mastercard, or American Express or by sterling cheque or draft drawn on a UK bank. All payments should be made to theBritish Medical Journal. Subscription orders may also be placed with any leading subscription agent or bookseller. For the convenienceof readers in the USA, orders may be sent to the British Medical Journal, PO Box 48, Franklin, MA 02038, USA. All other orders andenquiries for airmail rates, single copy sales and advertising should be sent to British Medical Journal, BMA House, Tavistock Square,London WCIH 9JR, United Kingdom. Website address: http://wMww.bmj.comIbmj/Copyright 1996 Joumal ofMedical Ethics. All Rights Reserved. No part of this publication mav be reproduced, stored in a retrieval svstem:or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission ofthe Journal itf Medical Ethics. ISSN 0306-6800

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Priscilla Alderson 139

A partial solution to the conflict between inform-ing patients honestly yet protecting them fromextreme anxiety can be for clinicians to work outwith their patients how much they wish to beinformed and involved in decision-making. It isimportant not to confuse poor communication andinformation-giving, and lack of support and time,with patients' seeming lack of interest or under-standing. Efforts to share informed decision-makingmay demand more time than staff are able to give.There are resource implications, which include timeto inform practitioners and to help them to acceptthe limitations of current knowledge, as well as timeto help their patients to come to terms with theseuncertainties. The degree to which patients wish tobe involved in decisions about trials will be influ-enced by their position on the equipoise spectrum:whether they want to think through all the optionsand come to a committed personal decision, oraccept communal equipoise as a kind of majorityview, or wish to defer to their doctor's decision andaccept professional equipoise by proxy.

AcknowledgementsI thank my research colleagues in the breast cancerstudy, Mary Madden, Professor Ann Oakley and DrRuth Wilkins, everyone who took part in the inter-views and the survey, all those who helped withgaining access to respondents, the research steeringgroup, and the Cancer Research Campaign forsponsorship.

Priscilla Alderson, BA, PhD, is Senior Research Officerat the Social Science Research Unit, Institute ofEducation, University ofLondon.

References1 Baum M. The ethics of clinical research. In: Byrne P,

ed. Ethics and law in health care and research. London:King's Fund, 1990.

2 Freedman B. Equipoise and the ethics of clinicalresearch. New England Jtournal of Medicine 1987; 317:141-5.

3 Collins R, Doll R, Peto R. Ethics of clinical trials. In:Williams C, ed. Introducing new treatments for cancer.Chichester: Wiley, 1992: 49-66.

4 Stiller C. Survival of patients in clinical trials and atspecialist centres. See reference 3: 132.

5 Silverman W. Human experimentation: a guided stepinto the unknown. Oxford: Oxford University Press,1985.

6 Gifford F. Community-equipoise and the ethics of ran-domised clinical trails. Bioethics 1995; 9,2: 127-48.

7 Ackner G. The ethics of ignorance. Journal of MedicalEthics 1995; 21: 56.

8 Alderson P, Madden M, Oakley A, Wilkins R. Women'sviews of breast cancer treatment and research: report of thepilot project. London: Social Science Research Unit,Institute of Education, 1994.

9 Chouillet A, Bell C, Hiscox L. Management of breastcancer in southern England. British Medical Jtournal1994; 308: 168-71.

10 See reference 8, and Thomson L. Combining care withrandomised research: questions for breast care nurses.In: Alderson P, ed. Breast cancer, randomised controlledtrials and consent. London: Social Science ResearchUnit, Institute of Education, 1994: 24-35.

11 Parmer M. Randomization before consent: practicaland ethical considerations. See reference 3: 189-202.

12 Alderson P. Children's consent to surgery. Buckingham:Open University Press, 1993.

13 Ellis R, Leventhal B. Information needs and decision-making preferences of children with cancer. Psycho-oncology 1993; 2,4: 277-84.

14 McPherson K. What do we know about breast cancerand what do we need to know? See reference 10: 3-23.

15 Baum M. New approaches for recruitment into RCTs.Lancet 1993; 341: 812-3.

16 Batt S. Patient no more: the politics of breast cancer.London: Scarlet Press, 1994.

17 Tobias J, Souhami S. Fully informed consent can beneedlessly cruel. British Medical J7ournal 1993; 307:1199-201.

News and notes

Attempt to meet patient concerns on medical recordsThe Patients Association is to press for the establishmentof a national committee to address the concerns ofpatients about their health and medical records, includ-ing accuracy, access and confidentiality, taking intoaccount developments in electronic technology.The proposer of the motion at PA's AGM,

Rosamund Rhodes-Kemp, said that although patientscould legitimately talk about "our records" they had no

control over them. They now had the right of access totheir own records, but what they were often given couldbe either some of them or nothing at all.The computerising of records raised concerns

about confidentiality, she said. Also patients needed tohave access to their own records and they needed tostop others having access to them for commercialreasons.

Page 4: Institute of MedicalEthics · organisation for the multidisciplinary study of medico-moral issues raised bythe practice ofmedicine, andconcernedwithresearch, edu-cation and information.

146 Placebos in clinical practice and research

Neurology, Neurosurgery and Psychiatry 1982; 45:1119-24.

33 Gram L, Schmidt D. Innovative designs of controlledclinical trials in epilepsy. Epilepsia 1993; 34 S7: 1-6.

34 Bourgeois B, Leppik JF, Sackellares JC. Felbamate: adouble-blind controlled trial in patients undergoingpresurgical evaluation of partial seizures. Neurology1993; 43: 693-6.

35 Pledger GW, Kramer LD. Clinical trials of investiga-tional antiepileptic drugs: monotherapy designs.Epilepsia 1991; 32: 716-21.

36 Elwes RDC, Johnson AL, Reynolds EM. The course ofuntreatable epilepsy. British Medical Journal 1988; 297:948-50.

37 Beghi L, Tognoni G. Prognosis of epilepsy in newlyreferred patients: a multicentre prospective study.Epilepsia 1988; 29: 236-43.

38 Reynolds EH. The influence of antiepileptic drugs onthe natural history of epilepsy. Epilepsy Research 1991;S3: 15-20.

39 Knapp MJ, Knopman DS, Solomon PR, et al. A 30-week randomised controlled trial of high-dose tacrinein patients with Alzheimer's disease. J7ournal of theAmerican Medical Association 1994; 271: 985-91.

40 Watkins PB, Zimmerman HJ, Knapp MJ, et al.Hepatotoxic effects of tacrine administration in patientswith Alzheimer's disease. Jtournal of the AmericanMedical Association 1994; 271: 992-8.

News and notes

First International Conference on DNA Sampling

This first international conference on DNA samplingwill be held in Montreal, Quebec, Canada fromSeptember 6-8 this year.The conference will provide a forum for interdiscipli-

nary discussion on: DNA sampling and banking;patenting and commercialisation; legal status ofhumangenetic material and information; models of consentand confidentiality; policy and ethical concerns; andgenetic epidemiology and diversity.

The conference is being organised by the ResearchCenter in Public Law (CRDP), Faculty of Law,Universite de Montreal, in collaboration with theHealth Law Institute, University of Alberta, QuebecNetwork of Applied Genetic Medicine, Quebec HealthResearch Fund.For information contact: Ms Samaa Elibyari, Tel:

(514) 343-2142, Fax: (514) 343-7508, e-mail:genet(crdp.droit.umontreal.ca.

Page 5: Institute of MedicalEthics · organisation for the multidisciplinary study of medico-moral issues raised bythe practice ofmedicine, andconcernedwithresearch, edu-cation and information.

Peter Bruce-Jones, Helen Roberts, Lesley Bowker and Veneta Cooney 159

Part 2: within two days of discharge

Subject number:Please answer the following questions by underlining/ticking the answers as appropriate.1 6B. Ifyour heart were suddenly to stop beating in hospital would you want vigorous attempts to be made to revive you?

Yes No Not sure1 8B. Would you want this to be decided by your:

self alone family alone doctor aloneself and family/doctor jointly?

19B. Which of the following factors do you consider the most important for your choice?:a) this illnessb) your usual state of health?c) life at home?d) the wishes ofyour family?e) religious beliefs?f) your age?g) your previous experience of resuscitation?h) other reasons:

22B. Do you think you should be asked your wishes regarding resuscitation when you come into hospital? Yes/ No

23B. Have you found this questionnaire stressful Yes / No24. Are there any other comments you wish to make?

News and notes

Fourth International Symposium on Sexual Mutilations

The Fourth International Symposium on Sexual scholars and legal experts from Europe, North America,Mutilations will be held at the University of Lausanne in Australia and Africa.Switzerland from the 9th to the 1 Ith ofAugust this year. For further information contact: George CThe symposium is for medical professionals and Denniston, MD, MPH, President, DOC, Doctors

others interested in the human rights, medical, and Opposing Circumcision, 2442 NW Market St Suite 42,ethical implications of male and female sexual mutila- Seattle, WA 98107, USA. Telephone: 415-488-9883.tions. Presenters will include health care professionals, [email protected].

Page 6: Institute of MedicalEthics · organisation for the multidisciplinary study of medico-moral issues raised bythe practice ofmedicine, andconcernedwithresearch, edu-cation and information.

Soren Holm, Peter Gjers0e, Glenn Grode, Ole Hartling, Karen E Ibsen and Henrik Marcussen 173

Senior Registrar at the Department ofInternal Medicine,Esbjerg Central Hospital. Henrik Marcussen isConsultant at the Department of Internal Medicine,Ringsted Hospital.

References1 Kohlberg L. The philosophy of moral development [vol 1].San Francisco: Harper & Row, 1981.

2 See reference 1: vol 2.3 Rest JR. Development in judging moral issues.

Minneapolis: University of Minnesota Press, 1979.4 Gilligan C. In a different voice. Cambridge, MA:

Harvard University Press, 1982.5 Self DJ, Skeel JD. Facilitating healthcare ethics

research: assessment of moral reasoning and moral ori-entation from a single interview. Cambridge Quarterly ofHealth Care Ethics 1992; 1: 371-6.

6 Fowler FJ. Survey research methods [2nd ed]. AppliedSocial Research Methods Series [vol 1]. Newbury Park,CA: Sage, 1993.

7 Morgan DL. Focus groups as qualitative research. SageUniversity Paper Series on Qualitative ResearchMethods [vol 16]. Newbury Park, CA: Sage, 1988.

8 Stewart DW, Shamdasani PN. Focus groups - theory andpractice. Applied Social Research Methods Series [vol20]. Newbury Park, CA: Sage, 1990.

9 Kitzinger J. The methodology of focus groups: theimportance of interaction between research par-ticipants. Sociology of Health and Illness 1994; 16:103-21.

10 Janis IL. The problem of validating content analysis. InLasswell HD, Leites N, eds. Language ofpolitics: studiesin quantitative semantics. Cambridge, MA: MIT Press,1965: 55-82.

11 Omery AK. The moral reasoning of nurses who work in theadult intensive care setting. Unpublished Dr NSc thesis,Boston University, 1985.

12 Tannen D. Speaking from nine to five. New York:William Morrow and Company, 1994.

13 Siegel S, Castellan NJ. Nonparametric statistics for thebehavioral sciences. New York: McGraw-Hill, 1988.

14 Borum F. Organisation, magt ogforandring. Kobenhavn:Nyt Nordisk Forlag, 1976.

15 Eriksen H, Ulrichsen H. Tre kulturer i hospitalssektoren.Kobenhavn: Nyt Nordisk Forlag, 1991.

16 Mednick SA, Higgins J, Kirschenbaum J. Psychologyexplorations in behavior and experience. New York: JohnWiley & Sons, 1975.

17 Moreno JD. Deciding together - bioethics and moralconsensus. New York: Oxford University Press, 1995.

18 Self DJ, Baldwin DC. Moral reasoning in medicine. In:Rest JR, Narvaez D, eds. Moral development in the pro-fessions. Hillsdale, NJ: Lawrence Erlbaum Associates,1994: 147-62.

News and notes

Institute ofMedicine, Law and Bioethics

The universities of Liverpool and Manchester, togetherwith the North West Regional Health Authority, haveestablished the Institute ofMedicine, Law and Bioethicsto ensure that the ethical and legal dimensions of bio-medical science and health care develop "with the samevigour and priority as scientific advance and patientcare".The institute intends to establish a programme of

research and education to enhance the quality andeffectiveness of health care delivery in the region andthroughout the UK through the promotion of safe,ethical and cost-effective practice.For more information phone: The University of

Liverpool, 0151 794 2302, Fax: on 0151 794 2311;The University of Manchester, 0161 275 7703, Fax:0161 275 7704.

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Book reviews 189

awaiting the coming together ofadvances in different fields and theclinical experience and insight to seehow they might be brought to bear onthe treatment of particular diseases.The point is amply illustrated in hishistorical survey.

Reviewers for this journal are askedto apply an internationally acceptedlibrary classification scheme to thebooks they write about. The schemehas 22 headings, from ethics (philo-sophical, religious, etc) to animalwelfare, and getting on for 100 suband sub-sub headings. Science and theQuiet Art does not fit readily into thiskind of a schema. It is not a systematictreatise, still less a textbook. And yet itwill be of the greatest value to any stu-dent of medicine (and the other clini-cal professions) or medical ethics. For

it is imbued, through and through,with David Weatherall's humanity andconcern for sick people. Although it isnot an autobiography, the author'spersonality and humour shine throughthe pages, not least in his choice ofquotations at the chapter headings.Thus for example he quotes RichardDoll on the difference between basicresearch and development: "A crashprogramme for the latter may be suc-

cessful; but for the former it is like try-ing to make nine women pregnant atonce in the hope of getting a baby in amonth's time" .(Chapter 9, page 268).At the end of the book he leads his

readers back to their patients. He is

concerned about the impact ofresource constraints and managerialdemands on doctors. Less and lesstime for each individual patientencourages a reductionist approach,compartmentalising diseases to fit thespecialised structure of hospital clini-cal practice, rather than fostering theseeking out of the root cause of a par-ticular patient's illness. An examplefrom his own experience illustrates thepoint. Two patients, brother andsister, have an identical defect in thegene that controls haemoglobin pro-duction. And yet the girl remainshealthy while her brother is alwaysanaemic and often seriously ill. Hercontinuing good health appears to beadequately explained by another gene,which they do not share, that mitigatesthe severity of her anaemia. But hispathology remained inexplicable untila more holistic approach - simply sit-ting and talking to him - uncovered a

saga of difficulties at work, financialproblems, breakdown of family rela-tionships and so on. Only after severalyears did it emerge that many of hisproblems were consequences of alongstanding agoraphobia. DavidWeatherall's comment on this case

expresses in other words the title of hisbook. "Apart from clinical and pas-toral skills, good doctoring requires an

ability to cut through many of theunexplained manifestations of disease,... and hence to get to the core of theproblem, knowing when scientific

explanation has failed and simplekindness and empiricism must takeover. This is the real art of clinicalpractice. It comes naturally to some

doctors, but others never quite accom-plish the difficult transition from thetextbook and the lecture hall to prac-tice in the real world" (page 345). Thisis a book to be read and savoured.

CAROLINE MILESFormerly, Member,

Nuffield Council on Bioethics

Books: information and orders

If you wish to order or require furtherinformation regarding the titlesreviewed here, please write to ortelephone the BMJ Bookshop, POBox 295, London WC1H 9JR. Tel:0171 383 6244. Fax: 0171 383 6662.Books are supplied post free in theUK and for BFPO addresses.Overseas customers should add 15per cent for postage and packing.Payment can be made by cheque insterling drawn on a UK bank or bycredit card (Mastercard, Visa, orAmerican Express, stating card num-ber, expiry date, and full name (Theprice and availability are occasionallysubject to revision by the publishers).

Page 8: Institute of MedicalEthics · organisation for the multidisciplinary study of medico-moral issues raised bythe practice ofmedicine, andconcernedwithresearch, edu-cation and information.

Journal ofMedical Ethics 1996; 22: 192

The Institute of Medical Ethics: research andmedical groups

Research

Since 1975, the institute has conductedresearch in many areas of health care ethicsand education, including issues related toresource allocation in health care, deathand dying, abortion and thc treatmcnt ofinfertility, research with human subjects,and medical involvement in torture.Recent studies have bcen concerned with

Medical groups

ABERDEENM EDICtAt (GROUPDr M D McArthur, Department ofMiedicine for the Elderly, Wood EndHospital, Aberdeen AB9 2YS

iIR.ING(HA'NM Mi-I)I(.AI (GROU'PMr R Sawers,Birmingham Maternity Hospital,Queen Elizabeth M1edical Centre,Edgbaston, Birmingham Bi 5 2T,G

BRISTOLIED)I( Al GROUPDr Oliver Russell, Reader in MentalHealth, Bristol Universitv,Department of M\ental Health,41 St Mlichael's Hill,Bristol BS2 8DZ

DUNDEE MSFEDI(AL GROUP.NMr Paul Prcce,Department of Surgery,Ninewells Hospital,Dundee DDl 9SY

I)DINBURGII .MEDICAt GROUt PDr Sarah Cunningham-Burley,Department of Public Ilealth Scicnces,Edinburgh University Medical School,Teviot Placc, Edinburgh EH8 9AG

GLASGOWM EDIC AL GROUPDr E Hillan,Department of Nursing Studies,Glasgow University,Glasgow G12 8QQ

LEEDS IMEDIC AL (GROUPMr Brian Bentley, Principal of the Schoolof Radiography.General Infirmnarv, Belnmont Grove,Lceds I S2 9NS

the use of animals in biomedical research,ethical aspects of HIV infection and AIDS,and medical and nursing education. Theinstitute s current research programmeincludes studies of decision-making inneonatal care and in the carc of thc cldcrlv.Its research unit, based in Edinburgh, worksin collaboration with multidisciplinarv

.ilC.MS DE-.R GRio(Al P(ROtDr R K McKinley.Department of General Practice.University of Leicestcr,Leicester General Hospital,Gwondolen Road,LIeicester ILE5 4IEw

.IlVERPOOLt MEDICAL GROUPDepartment of General Practice,Liverpool Universits, PO Box 1417,Livcrpool L69 3BX

cONDONHi LNI liTE) MEDiC AI. ETlHIS (iROUP(,tGYIS AND ST THOMAS'S HOSPITAIL'Dr Graham Clayden,Reader in Pacdiatrics,St Thomas's Hospital,Lambeth Palace Road,London SEl 7EH

T HI- ROYAI. FREE ETHIt S G,ROULP'SDr IMargaret Llovd,I)epartment of Public Hcalth andPrinmary Care, lThe Royal FreeHospital School of Medicine,IPond Street,London NW3 2PF

S (.GROUR(PFES MIDii Al (ROlEDr N Eastman,St George's Hospital Medical School,ILondon SWV1 7 ORE

S 1 MARY'S HOS'I Al I - HiC S I ORU.\IJane Tcssicr-Dcnham.St iMarv's Hospital Ethics Forum,St Mary's Hospital Medical School.Pracd Street,London W2

working parties whose membership is drawnfrom all parts of the United Kingdom. -T heresearch unit provides information andadvice on current issues in medical ethics toa variety of academic and health carcbodies. Reports on the institute's researchare regularly published in medical andnursing journals and by the institute.

MANCHES I ER NIEDiC AL G,ROUi'D)r Geoffrey Jessup,27 Oakwood Lane,Bowden, Altrincham,Cheshire WAI4 3DI

NES C.AI 1± MEi4.)I(:1i (,ROUPThe Rcvd Bryan Vernon, Lecturer in theEthics of Health Care, NewcastleUniversitv, Department of Primary HeialthCare, School of Health Care Sciences,The Medical School, FramlingtonPlace. Newcastle upon Tvne NE2 41II

NOFINGHANAIM F'I)ICAL EUIHICS GROLUPl'Dr T C O'Dowd,Department of General Practice,University Hospital and MNledicalSchool, Clifton Boulevard, NottinghanNG7 2UH

SOUTHAMPTON NEDIC AL G,ROUJI'The Revd T Pinner,8 Bassett Close, Southampton S02 3FP'

Mvvedical groups associated with theInstitute of Niedical Ethics havc beenestablished in British university teachinighospitals. Each academic year they arratngcprogrammes of lectures and symposia onissues raised by the practice of medicinewhich concern other disciplines. Althoughthese programmes are addressed primaril'yto medical, nursing and othcr hospital stu-dents they are open to all members of themedical, nursing and allied professions.There is no fee for attendance. Lecturelists are available by direct application tothe appropriate co-ordinating secretarynamed above. A stamped addresscd A4cnvelope would be appreciated.

Page 9: Institute of MedicalEthics · organisation for the multidisciplinary study of medico-moral issues raised bythe practice ofmedicine, andconcernedwithresearch, edu-cation and information.

Journal ofMedical Ethics 1996; 22: 192

The Institute of Medical Ethics: research andmedical groups

Research

Since 1975, the institute has conductedresearch in many areas of health care ethicsand education, including issues related toresource allocation in health care, deathand dying, abortion and thc treatmcnt ofinfertility, research with human subjects,and medical involvement in torture.Recent studies have bcen concerned with

Medical groups

ABERDEENM EDICtAt (GROUPDr M D McArthur, Department ofMiedicine for the Elderly, Wood EndHospital, Aberdeen AB9 2YS

iIR.ING(HA'NM Mi-I)I(.AI (GROU'PMr R Sawers,Birmingham Maternity Hospital,Queen Elizabeth M1edical Centre,Edgbaston, Birmingham Bi 5 2T,G

BRISTOLIED)I( Al GROUPDr Oliver Russell, Reader in MentalHealth, Bristol Universitv,Department of M\ental Health,41 St Mlichael's Hill,Bristol BS2 8DZ

DUNDEE MSFEDI(AL GROUP.NMr Paul Prcce,Department of Surgery,Ninewells Hospital,Dundee DDl 9SY

I)DINBURGII .MEDICAt GROUt PDr Sarah Cunningham-Burley,Department of Public Ilealth Scicnces,Edinburgh University Medical School,Teviot Placc, Edinburgh EH8 9AG

GLASGOWM EDIC AL GROUPDr E Hillan,Department of Nursing Studies,Glasgow University,Glasgow G12 8QQ

LEEDS IMEDIC AL (GROUPMr Brian Bentley, Principal of the Schoolof Radiography.General Infirmnarv, Belnmont Grove,Lceds I S2 9NS

the use of animals in biomedical research,ethical aspects of HIV infection and AIDS,and medical and nursing education. Theinstitute s current research programmeincludes studies of decision-making inneonatal care and in the carc of thc cldcrlv.Its research unit, based in Edinburgh, worksin collaboration with multidisciplinarv

.ilC.MS DE-.R GRio(Al P(ROtDr R K McKinley.Department of General Practice.University of Leicestcr,Leicester General Hospital,Gwondolen Road,LIeicester ILE5 4IEw

.IlVERPOOLt MEDICAL GROUPDepartment of General Practice,Liverpool Universits, PO Box 1417,Livcrpool L69 3BX

cONDONHi LNI liTE) MEDiC AI. ETlHIS (iROUP(,tGYIS AND ST THOMAS'S HOSPITAIL'Dr Graham Clayden,Reader in Pacdiatrics,St Thomas's Hospital,Lambeth Palace Road,London SEl 7EH

T HI- ROYAI. FREE ETHIt S G,ROULP'SDr IMargaret Llovd,I)epartment of Public Hcalth andPrinmary Care, lThe Royal FreeHospital School of Medicine,IPond Street,London NW3 2PF

S (.GROUR(PFES MIDii Al (ROlEDr N Eastman,St George's Hospital Medical School,ILondon SWV1 7 ORE

S 1 MARY'S HOS'I Al I - HiC S I ORU.\IJane Tcssicr-Dcnham.St iMarv's Hospital Ethics Forum,St Mary's Hospital Medical School.Pracd Street,London W2

working parties whose membership is drawnfrom all parts of the United Kingdom. -T heresearch unit provides information andadvice on current issues in medical ethics toa variety of academic and health carcbodies. Reports on the institute's researchare regularly published in medical andnursing journals and by the institute.

MANCHES I ER NIEDiC AL G,ROUi'D)r Geoffrey Jessup,27 Oakwood Lane,Bowden, Altrincham,Cheshire WAI4 3DI

NES C.AI 1± MEi4.)I(:1i (,ROUPThe Rcvd Bryan Vernon, Lecturer in theEthics of Health Care, NewcastleUniversitv, Department of Primary HeialthCare, School of Health Care Sciences,The Medical School, FramlingtonPlace. Newcastle upon Tvne NE2 41II

NOFINGHANAIM F'I)ICAL EUIHICS GROLUPl'Dr T C O'Dowd,Department of General Practice,University Hospital and MNledicalSchool, Clifton Boulevard, NottinghanNG7 2UH

SOUTHAMPTON NEDIC AL G,ROUJI'The Revd T Pinner,8 Bassett Close, Southampton S02 3FP'

Mvvedical groups associated with theInstitute of Niedical Ethics havc beenestablished in British university teachinighospitals. Each academic year they arratngcprogrammes of lectures and symposia onissues raised by the practice of medicinewhich concern other disciplines. Althoughthese programmes are addressed primaril'yto medical, nursing and othcr hospital stu-dents they are open to all members of themedical, nursing and allied professions.There is no fee for attendance. Lecturelists are available by direct application tothe appropriate co-ordinating secretarynamed above. A stamped addresscd A4cnvelope would be appreciated.


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