Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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Oncological Terrain, HRT prescription, and patient’s choice.
- Sergio Stagnaro (13 February 2004)
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how informed is consent?
- Giovanni Codacci-Pisanelli (13 February 2004)
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For goodness' sake...
- John Hopkins (13 February 2004)
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SUPERMARKET MEDICINE - is that the way forward
- Radha Sundaram (13 February 2004)
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Patient Choice and Government Targets
- David Gill (13 February 2004)
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Medicine as a science
- Dr. Herbert H. Nehrlich (13 February 2004)
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Abusing psychiatric patients by denying them choice.
- AK. Al-Sheikhli. (13 February 2004)
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Is this really abuse?
- James D Atkinson (13 February 2004)
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Missing reference
- Richard Smith (14 February 2004)
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Having a say in how my body is treated
- Julia C Grier (14 February 2004)
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Damage Limitation?....I don't think so!
- Stephen J Beazer (14 February 2004)
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Consumers Deserve Choice
- Justine M Caines (14 February 2004)
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"Rolls Royce or stay put" syndrome
- Sethuraman K Raman (15 February 2004)
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Understanding Responsibility, uncertainty and individuality in decision-making
- Richard Fuller (15 February 2004)
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Re: "Rolls Royce or stay put" syndrome
- Sunil Ratilal Moreker (16 February 2004)
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bad piece of advice?
- Joseph C. Watine (16 February 2004)
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Choosing best treatment
- Roger A Fisken (16 February 2004)
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Are we, the doctors, always prepared to choose?
- Mónica Granja (16 February 2004)
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Patient abuse
- Deborah A. Kraut (16 February 2004)
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Too simple an Editorial Comment
- Bob Smith (17 February 2004)
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Involving patients in decision making
- Anthony Papagiannis (17 February 2004)
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Empowering prostate cancer patients through education.
- Donna L. Pogliano (18 February 2004)
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The team of doctor and patient
- Dr.Herbert H. Nehrlich (18 February 2004)
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Are We Afraid of Making Choices?
- Ruchir D Trivedi (19 February 2004)
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good in theory, little in practice.
- manan vasenwala (19 February 2004)
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Abuse is the wrong line of argument
- Aanand D Naik (20 February 2004)
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Where is the real freedom of both patients and phisician ?
- G Vetrugno, Vetrugno Giuseppe, D'Aloja Ernesto, Luongo Achille Manfredi, Volpe Massimo, Scorcelletti Leonardo (20 February 2004)
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Re: good in theory, little in practice.
- Julia C Grier (20 February 2004)
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Re. Good in theory little in practice
- Stephen J Beazer (21 February 2004)
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Denial alternative treatments might even exist
- Diana F. Pargeter (23 February 2004)
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the FIRST patient choice
- Barbara R. Parker (23 February 2004)
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Re: Having a say in how my body is treated
- John S Shackcloth (20 March 2004)
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Let's reserve judgment for future, better research
- Pepi Granat, MD (20 August 2004)
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Sergio Stagnaro, Specialist in Blood, Gastrointestinal, and Metabolic Diseases, Researcher in Biophysical Semeio r Via Erasmo Piaggio 23/8 16037 Riva Trigoso (Genova) Italy
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Sir, Although evidence on the hormone replacement therapy (HRT) risks of unwanted side effects has accumulated, HRT has been used increasingly all around the world over the past five decades. Due to the addition of progesteron, because of the increased risk of endometrial cancer, emerged evidence of paramount risk of combined therapy on breast cancer, coronary heart disease, stroke, and venous thromboembolism from a randomised trial was reported, among a lot of other problems, fully reported in K. McPherson’s really excellent article (1). I can’t, however, agree with this author’s statement: “Firstly, current biological theory does not predict the effects of hormones on cancer and cardiovascular disease well”. Evidently, one overlooks both the existence and the developments of Biophysical Semeiotics, that allows doctor to recognize easily, at the bed side, i.e., on very large scale, the different “constitutions”, including Oncological Terrain (2) (See HONCode web site 233736, www.semeioticabiofisica.it). As allows me to state a 46 years long “clinical” experience, since congenital acidosic functional mitochondrial cytopathology is ignored, a "conditio sine qua non" of the most frequent and severe human disorders, including malignancies and DM, both 1 and 2, (2-6), all current clinical researches are fundamentally biased,and whatever information given to patient can not be complete and updated . That is, we must consider the existence and assess the seriousness, as well as the precise location of Congenital Acidosic Enzyme-Metabolic Histangiopathy (CAEMH)(2, 3). In fact, both environmental risk factors and every drug, including oestrogens-progesterone, suggested as a risk factor for breast and/or ovarian cancers, "could" influence some human biological functions and/or bring about different disorders, such as cancers, but exclusively in relation to both the presence and the intensity of CAEMH, Oncological Terrain is based on, in a well-defined biological system, detected by means of the new physical semeiotics. I formerly discussed (Fighting tobacco smoking is unavoidable duty for all physicians. Stagnaro Sergio, 4 May 2001, Rapid Responses) this overlooked functional mitochondrial cytopathology, which is the unavoidable, genetic factor of common human disorders (2-6). For instance, apart from the well-known negative influence of oral contraceptive use on breast and/or ovary oncogenesis (1, 5) and/or heart and artery disorders (4), we have to consider accurately the importance of the genetic predisposition, e.g., Onological Terrain. 1) McPherson K. Where are we now with hormone replacement therapy? BMJ 2004;328:357-358 (14 February), doi:10.1136/bmj.328.7436.357 2) Stagnaro S., Stagnaro-Neri M. Introduzione alla Semeiotica Biofisica. Il Terreno Oncologico. Travel Factory, Rome, in press. 3) Stagnaro S., Stagnaro-Neri M. Una patologia mitocondriale ignorata: la Istangiopatia Congenita Acidosica Enzimo-Metabolica. Gazz. Med. It. - Arch. Sci. Med. 149, 67 1990. 4)Stagnaro-Neri M., Stagnaro S. Deterministic Chaos, Preconditioning and Myocardial Oxygenation evaluated clinically with the aid of Biophysical Semeiotics in the Diagnosis of ischaemic Heart Disease even silent. Acta Med. Medit. 13, 109 1997. 5) Stagnaro-Neri M., Stagnaro S., Cancro della mammella: prevenzione primaria e diagnosi precoce con la percussione ascoltata. Gazz. Med. It. – Arch. Sc. Med. 152, 447 1993. 6) Stagnaro S., Diet and Risk of Type 2 Diabetes. NEnglJM, 346 (4), 297, 2002 Competing interests: None declared |
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Giovanni Codacci-Pisanelli, Research Associate University
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Giving a patient the right to take part in a decision that can have a substantial impact on quantity and/or duration of his/her life is a crucial point. But I wonder how "informed" can this consent be: I am a specialist in Oncology, and I doubt that I would be able to give an informed consent if I had a cardiological problem! I think I would just rely on the advice of a specialist I trust. I think this is topic as relevant as information: trust your Doctor, if you don't trust him/her, seek another specialist! Giovanni Codacci-Pisanelli Competing interests: None declared |
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John Hopkins, GP Jubilee Medical Group Newton Aycliffee DL5 4SE
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Dear Dr Smith, I can’t be the only reader who wishes that you would stop swiping your standfirsts from the Daily Mail. As for the 'mass drugging' of women on HRT, it’s not that long since GPs who were reluctant to prescribe HRT were castigated in the most lurid terms by the popular press for denying women choice. Yours sincerely, John Hopkins Competing interests: I am a GP |
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Radha Sundaram, Specialist Registrar victoria Infirmary,Glasgow
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While I completely agree that informed consent is the way forward ,I do believe that there are situations where offerring patients an array of treatment options can leave them rather bewildered and confused, merely adding to their angst. In situations wherein patients are acutely in need of suitable treatment ,the optimal path perhaps would be to mention the risks and benefits of the outlined options and guide them towards a management choice,based on the evidence and the clinicians judgement.It has been shown in numerous observational studies that information given to acutely unwell patients (even women in labour etc) is inadequately processed and comprehended by them. Arrogant though it may seem ,there are times that perhaps the doctor does know best. Competing interests: None declared |
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David Gill, Lead Pharmacist, Angus LHCC Whitehills Hospital, Forfar DD8 3DY
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I had a quiet chuckle to myself when reading Richard Smith's editorial today. As a pharmacist most of my knowledge is around medication based treatments, and it is well known that patient choice is one of the main factors contributing to improved adherance with treatment- when a patient is involved in the process they are more likely to understand the rational, risks and benefits of treatment. How this will sit with the new GMS contract, and other monitoring of treatments required under current systems could prove to be an interesting debate in the months to come. Respecting patients wishes not to increase the quantity of medicines ingested for sometimes marginal reductions of risk in e.g. CHD events could hit GPs income, and the motivation may be present to over-ride patient choice to chase targets. Competing interests: I provide prescribing and pharmaceutical advice to an LHCC |
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Dr. Herbert H. Nehrlich, Private Practice Bribie Island, Australia 4507
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Medicine is all about denying patients choice. What else is new ? Practising medicine under false pretenses is what medicine is practised under today. When my father visited patients in my small hometown in Germany he would withhold information from his dying patients in order to spare them the shame, the truth and the whatchamacallit. Tagging along as a six year old on housecalls, I clearly remember his comments: "If you tell them that they have 6 months to live, then they will put the spoon down in 6 months!" While struggling with the idea of whether it was right to not tell them it also occured to me that I would have wanted to know. Or would I ? Medicine is all about voodoo, about secret potions and magical ministrations, about giving comfort to real people. Abuse is what it is, although it is not a nice word but, if you look at the anxious patient visiting the doctor and demanding to be given a cure, I think a bit of von Muenchhausen will come to the rescue - what choice do you have? As to Richard Smith's recent writings ( definitely AFTER the Polypill) I think he deserves to win the recent car-colour contest (if there was one) and be awarded a Silver Arrow. Competing interests: None declared |
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AK. Al-Sheikhli., Paychiatrist. Medical Centre,2 Manor Court Avenue,Nuneaton,CV11 5HX,UK.
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EDITOR--It was interesting to read, abusing patients by denying them choice by Smith(BMJ 2004;328:0-f). My comment as a psychiatrist regarding psychiatric patients, I think we ought to make it clear to our patients the different types of treatments which are available for our patients. For, e.g, a depressed patient we can discuss different treatment options which are available like psychopharmacological, psychological, and electroconvulsive therapies...etc. and so on for other patients.. Thanking you,
Competing interests: None declared |
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James D Atkinson, SpR Anaesthesia LS9
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This editorial seems to be rather removed from reality. It would be wonderful to offer patients the range of screening tests for colorectal cancer listed, but we in the U.K. work in the NHS. Access to the range of services mentioned in the article is limited in some hospitals; the referring clinician has to think not only of the most appropriate investigation on pure clinical grounds and the patient choice, but whether the hospital has the service available within a sensible time of the request. If the shorter wait for barium enemas / lack of a colonoscopist / presence of an experienced GI radiologist in a given hospital pushes the referring clinician into recommending the barium enema over the colonoscopy, is the clinician abusing the patient or acting in the patient's best interests by using the available resources to the patient's best advantage? Making lofty pronouncements such as "90% of these patients have been abused" makes great copy, I am sure, but is of no practical value whatsoever in health care systems with limited resources. Competing interests: None declared |
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Richard Smith, Editor BMJ
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I apologise for omitting from my editor's choice the reference to the Californian study. Here it is: Leard LE, Savides TJ, Ganiats TG. Patient preferences for colorectal cancer screening. J Fam Pract 1997;45:211-18. Richard Smith, editor, BMJ Competing interests: I'm the editor of the BMJ and accountable for all it contains. |
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Julia C Grier, [patient] Belfast, N Ireland
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Despite the rather emotive way in which this topic was introduced, the author is making a very welcome point. As a patient, I trust my doctors to give me the best treatments they know about. I don't, however, expect them to be experts in every disease. Nor do I expect them to have time to research the more obscure ones. So when I was diagnosed with Sarcoidosis, I did a great deal of reading to find out about it. It would appear that the only treatment offered in the UK is steroids, which are only effective for short term relief of symptoms, do long term damage, and may even, according to some research, encourage the spread of the disease throughout the body. I also found that, contrary to common belief, sarcoid rarely goes away on its own as easily as docs would hope. I found that some research points to a bacterial cause and therefore an antibiotic cure. There is a trial going on based in America of a treatment using long-term low-dose minocycline, combined with the angiotensin receptor blocker Olmetec (olmesartan medoxomil), which enhances the effectiveness of the antibiotic and reduces the Herxheimer effect as the bacteria die. As these drugs seem to be less risky than steroids, and (by the results seen so far in the trial) more effective in promoting remission, I would like to be a guinea-pig. The risk appears better than the continued untreated disease, I can assure you. However, my docs are only prepared to give me minocycline on its own, which after two 25mg doses qod provoked such Herxheimer reaction I was scared to take another dose. Yet my endocrinologist says the only alternative he can offer is "monitoring" until he thinks I'm bad enough for steroid treatment. Presumably "bad enough" means by test results, not by the daily agonies of the condition! Yes, of course I trust my docs to know more about medicine than I do, but when they are unable to give me any valid reason why they won't prescribe something which is giving dramatic relief to many, I feel they are erring on the side of caution so that their insurance will cover them in the event of anything going wrong. Nothing wrong with that - but can I not sign some sort of legal waiver and take responsibility for my choice of treatment? It's my body! Competing interests: None declared |
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Stephen J Beazer, Self employed Scarborough YO12 4UH
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For many years Sarcoidosis sufferers like myself have been offered nothing but steroids which is nothing more than a sticking plaster and a dangerous one at that. We are told from all specialists and GP's that little is known about the disease and there is no cure, and the BMJ claim Sarcoidosis is not important enough to even report on it. As a sufferer I can assure both the BMJ and all medical professionals that it is extremely important to those effected by it and contrary to popular belief you cannot go about your daily life without major disruption to both you and those close to you. Much more is known now about Sarcoidosis but yet nothing is being done here in the UK. New treatment has emerged and has also been reported to the BMJ involving both minocycline, azithromycin (antibiotics) and an Angiotensin Receptor Blockers (ARB's) such as Benicar or Olmetec, though virtually every doctor in the UK is reluctant to follow this treatment resulting in the patient having no choice. Fellow sufferers in the USA are experiencing both remission and cure from in some cases a disease they’ve had for over 25 years. Unfortunately none of this is available to us in the UK and nobody is prepared to investigate. It seems a patient can find out more than the medical profession in terms of any progress being made and yet get nowhere when it comes to trying to persuade the GP’s to try something that is not even harmful. Steroids is still the only minor comfort to any sufferers who are prepared to risk becoming Diabetic, suffer from Osteoporosis and glaucoma along with a host of other undesirable side effects. I’m told it’s all about “damage limitation” but there seems to be a flaw in this theory if the above ailments are better than something that is not treated as serious or even reported on. The alternative treatment is not dangerous gives the patient a possibility of a cure and gives little if any side effects, yet steroids are dangerous and will ultimately give you far more problems than you started with from long term use and are not a cure. Therefore I would have to say this is another typical example of doctors giving sufferers no choice. I'd be interested to see who eventually breaks the mould here in the UK and suggests this new treatment, and in years to come takes all the credit for all the success stories. Meanwhile we'll keep suffering shall we? Competing interests: None declared |
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Justine M Caines, Consumer, Mother Merriwa NSW 2329, Australia
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Bravo Mr Smith; with informed choice, comes knowledge and with that power. In turn this power creates personal responsibility. This notion is bandied around medicine and society generally as a way to reduce the overly litigious western culture. As a childbearing woman in Australia I am denied best practice maternity services. Instead I am forced into an overly medicalised model, with little regard for evidence and a pre-occupation for practitioner and organisational convenience. The result? A system of women not reporting the stunning outcomes that should reflect the huge resource invested, in fact poorer outcomes than some countries utilising more appropriate care (such as midwifery for the healthy majority). A reduction in such blatant overservicing of a healthy majority could serve those in real need of medical care. Competing interests: None declared |
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Sethuraman K Raman, Director-Professor of Medicine JIPMER, Pondicherry 605006, India.
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Sir, Wrongly applied Evidence Based Medicine (EBM) is another major reason for patient abuse highlighted well in the editorial. Reductionist approach - the "single best option" for diseases - reduces EBM to a mechanical and unmindful practice of telling the patients what they should do. Soon, such a practice is internalised to merely inform the patients that whatever is to be done on them is based on the best evidence. Most doctors would be unaware that it amounts to "patient abuse" as you have termed such a decision making style. I regularly see low income group patients with chronic diseases like diabetes and hypertension carrying "the best EBM based recipes" that cost them two to four months of earnings per month of therapy! No specialist would ever write such a recipe if he or she applied her mind to the individual patient and adopted co-operative informed decision making model. When such instances are detected in my unit, they are labelled as another example of "Travel in a Rolls Royce or Stay put Syndrome." Competing interests: None declared |
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Richard Fuller, Specialist Registrar & Honorary Lectrurer in Geriatric Medicine The General infirmary at Leeds, LS1 3EX
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EDITOR – Smith’s editorial provides a welcome contribution to the high profile debate surrounding patient choice and autonomy in decision- making.[1] Patient choice is a key feature of our current health care model, highlighted in the national consultation paper on choice that formed the basis of a recent strategy paper presented to parliament.[2] Promoting informed choice is important, fulfilling ethical considerations of patient autonomy, but it is one that represents a minefield in terms of effective risk communication between clinician and patient. The process of successful risk communication and informed consent is one that is increasingly reflected in a growing evidence base, but one that also warns of extensive misunderstanding of evidence, risks and probabilities by clinicians and patients.[3] Transferring choice is not an inert process, as the accompanying responsibility for making important decisions is likely to rest heavily on both patients and physicians, especially if outcomes are unsuccessful and/or harmful. Smith relates a paper dealing with patient choice and colorectal screening, where patients were informed about detailed outcome data and cost. He concludes that had these patients been managed by physician- directed choices, 90% would be have been ‘abused’, through undergoing a procedure other than the one they preferred. Compare this with Smith’s recent report of a US physician who engaged in a partnership model to prevent this ‘abuse’, allowing his patient to make an informed choice – and then was sued 3 years later after the patient died.[4] The challenge for clinicians, patients and editors does not rest in a blanket condemnation of withholding choice, but in sensibly embracing unresolved issues of responsibility, uncertainty and individuality in decision-making. It is timely to turn to the words of Paul Dieppe that link risk communication and individuals’ health decision-making: ‘One facet of individualisation is the need to understand patients’ preferences, choices and understanding of risk’.[5] 1. Smith R. Abusing patients by denying them choice. BMJ 2004;328:0-f 2. Department of Health. Building on the Best; Choice, responsiveness and equity in the NHS. DoH, London 2003. http://www.doh.gov.uk/choiceconsultation/ 3. Kalet A, Roberts JC, Fletcher R. How do physicians talk with their patients about risks? J Gen Intern Med 1994;9:402-404 4. Smith R. Doctors mangled by “justice”. BMJ 2004;328:0-g 5. Dieppe P. Foreword: Patients’ Preferences for Treatment. MRC Health Services Research Collaboration Workshop Proceedings. 2000 Competing interests: None declared |
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Sunil Ratilal Moreker, Assoc Prof, MGM Medical College,Kamothe,410209
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The authors have raised a very pertinent question of application of evidence-based medicine (EBM) in a practical way. It has been an endeavor everywhere to minimize the “Rolls Royce or stay put” kind of effect by proper application to the population. Its implementation as curricula as has been reported by Mahoney et al (1) would make things better in the years to come. The solution to the present debate would be a shared decision making by informing patients about evidence and which method works best with him as has already been pointed out by Ford et all (2), though the level of the physician’s participation in decision making is still debatable. In addition the role of drug companies in influencing doctors and patients as well as other drugs the patients is on and their interactions are important considerations while practicing EBM(3) and so the patients ability to comprehend as well as the doctors ability to resist companies also matter besides the patients economic condition. Here Johnson’s article makes good reading(4) 1) Mahoney JF, Cox M, Gwyther RE, O'Dell DV, Paulman PM, Kowlowitz V. Evidence-based and Population-based Medicine: National Implementation Under the UME-21 Project. Fam Med. 2004 Jan;36 Suppl:S31-5. 2) Ford S, Schofield T, Hope T. What are the ingredients for a successful evidence-based patient choice consultation?: A qualitative study. Soc Sci Med. 2003 Feb;56(3):589-602. 3) Gustafsson LL, Widang K, Hoffmann M, Andersen-Karlsson E, Elfman K, Johansson B, Johansson E, Larson M. Computerized decision support in drug prescribing I: Better survey of patients' medications yields better quality of care Lakartidningen. 2003 Apr 10;100(15):1333-7. 4) Johnson DE. . Sell evidence-based medicine; cut drug cost. Health Care Strateg Manage. 2004 Jan;22(1):2-4 Competing interests: None declared |
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Joseph C. Watine, Consultant, Laboratory Medicine Hôpital de Rodez, France
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One can agree with Smith that doctors who deny patients choice abuse them [1]. However, in my view, Smith’s first piece of advice to medical students (If asked: "What is the treatment for x?" Don't answer: "y." Instead answer: "Whatever the patient chooses together with me after being fully informed of the pluses and minuses of all options" [1]) is not an excellent one. Such piece of advice might be interpreted by some students as an encouragement for them not to talk about their patients’ problems with colleagues. In the end, their patients would be abused too. [1] Smith R. Abusing patients by denying them choice. BMJ 2004; 328 (14 February). Competing interests: I think Richard Smith is an excellent editor-in-chief |
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Roger A Fisken, Consultant Physician Friarage Hospital, Northallerton, North Yorkshire, UK,, DL6 1JG
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I am disappointed that Dr Smith seems yet again to have indulged his passion for doctor-bashing - what purpose is served by using an emotive term like "abusing" patients, which implies that doctors are, at best, unfeeling and at worst are keen to bully patients for their own personal amusement. The idea that a patient's choice of treatment is automatically correct is patently absurd: although it doesn't happen very often we have all come across occasional patients who will refuse to have a treatment in the face of overwhelming evidence of its benefit, or who will vociferously demand a treatment which is worthless. For example, I have had experience of looking after patients with severe hypothyroidism who refuse to take thyroxine or any other form of thyroid hormone replacement; I am also seeing increasing numbers of young women with polycystic ovary syndrome (PCOS)who demand metformin in order to help them lose weight, despite the lack of any convincing evidence that metformin actually helps weight loss in PCOS. The most extreme examples are patients with body dysmorphic syndrome who press for the amputation of a healthy limb in order to make them feel 'normal'. On the other side of the coin, most patients whom I see have the common sense to realise that I know more about health and disease than they do (otherwise I wouldn't be in the job!) and whose primary choice in opting for a treatment is to take my advice. Why do you find it so hard to accept that doctors actually have a body of expertise which they use for the benefit of patients? To do this is not paternalism, it is simply doing one's job. Patients have a right to be fully informed about every decision which concerns their health but they should be encouraged to understand that, in most instances, the doctor's recommendation will be more likely to be the right choice than something plucked out of the air, off the pages of a daily newspaper or from a random internet site. Using terms like 'patient abuse' really does not help. Competing interests: None declared |
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Mónica Granja, Family physician in Portugal Centro de Saúde Sra. Hora, R Lagoa, 4460 SRA. HORA
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The thing is: to choose, the patients need to be informed, and, to inform them, we need to know exactly what we are talking about. Trying to do this we may find that despite being the ones who usualy choose (for the patients), sometimes we have not all the information, and often we put a little of our subjectiveness in the choice. As for the rest, we should let patients choose (and know) as much as they are willing and prepared to. Competing interests: None declared |
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Deborah A. Kraut, MILR, M.Ed. Bethesda, Maryland, USA
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Dear Sir, Your editorial begins the discussion of the most important change for doctors - the change in their patients. Twelve years ago, a doctor who I trusted to get me through my fourth and first successful pregnancy, informed me that I would be taking HRT. I had read the studies and had concerns, but he had made it clear that his decisions were not in the arena for discussion. So, I walked out of his office and never returned. A patient always has this choice - to leave the waiting room. I am one of the growing number of "new patients." The internet enables me to search for peer-reviewed research articles at the National Library of Medicine web pages. I come prepared to a doctor's appointment. When I hang up my street clothing and put on a paper gown, I do not hang up my mind or lose the ability to speak. A doctor who is not ready and willing to discuss the current research and the alternatives is going to look out at an empty waiting room. And a doctor who is not ready to read an e-mail from a patient with a hyperlink to a research study, is going to find that he/she is behind the curve. Thank you again for your editorial. Competing interests: None declared |
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Bob Smith, Member of CPPHI Patients' Forum for a PCT Retired, Bedfordshire
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Sir, Two comments. Firstly, choice implies some slack in the system - all of the Primary Care Trusts (PCTs) in this area strive very hard not to fall too far behind patient and government demands with acute, and chronic, underfunding. Secondly, there are times when the clinician has to know best and make his professional recommendation for the patient's well being. We, as patients, accept this - it's part of your responsbilities and ours to listen to you. Competing interests: None declared |
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Anthony Papagiannis, Respiratory Physician Thessaloniki, Greece
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EDITOR—I am all for informing patients on their diagnosis and available treatment options [1]. However, pragmatically speaking, we should not ignore certain facts about decision making in medicine. For instance, how much can patients learn within a short time about their condition that would allow them to decide on the best treatment? Can we expect them to grasp statistical concepts about outcomes which even we as doctors frequently misinterpret? Can patients cope with the uncertainty inherent in many everyday medical decisions? And can patients make rational choices about themselves under the emotional strain of a difficult diagnosis? Nowadays we have come to appreciate that patients differ in their desire to know the truth and to be involved in clinical decisions. The ‘all-or-none’ principle of physiology does not apply in human interactions, where a wide and continuous spectrum of responses is the norm. Political correctness may be the order of the day, but as professionals we should not forget Franz Ingelfinger’s admonition: ‘A physician who merely spreads an array of vendibles in front of the patient and then says, “Go ahead and choose, it’s your life,” is guilty of shirking his duty, if not of malpractice. The physician, to be sure, should list the alternatives and describe their pros and cons but then, instead of asking the patient to make the choice, the physician should recommend a specific course of action… The patient may then refuse the recommendation, which is perfectly acceptable.’ [2] Finally, in imparting information to the patients we often, knowingly or unknowingly, introduce our personal preferences regarding their management. ‘Selling a treatment’ we are most familiar with or in which we have a vested interest may not always be ethically sound. However, again in Ingelfinger’s words, ‘A certain measure of these characteristics [authoritarianism, paternalism, and domination] is essential to good medical care.’ [2] Our ‘sales technique’ may well have a strong placebo effect. 1. Papagiannis A. Providing information: when, how and what to tell your patients. Student BMJ 1998;6:188-90 2. Ingelfinger FJ. Arrogance. N Engl J Med 1980;303:1507-11 Competing interests: None declared |
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Donna L. Pogliano, Co-author of USA
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I read with interest the editorial and the subsequent responses concerning the issue of informed consent and the discussion of the responsibilities of patients and of doctors in making disease management decisions. Patient education and empowerment and informed consent are issues near and dear to my heart as the co-author of a very popular patient education tool for prostate cancer patients called "A Primer on Prostate Cancer, The Empowered Patient's Guide". My co-author Dr. Stephen B. Strum is a world renowned medical oncologist specializing exclusively in prostate cancer with over twenty years of experience in treating prostate cancer patients. Our book is the result of our commitment to be certain that prostate cancer patients all over the world have access to the information that is so vital to making appropriate disease management decisions. Physicians who diagnose and treat prostate cancer are often reluctant to take the responsibility for recommending a disease management strategy to the patient since there are many available treatments which may, for some patients, be equally effective. There is considerable controversy over which of the treatment options will produce the best chance for long term freedom from disease with the best chance of freedom from intolerable side effects for an individual patient. Despite this, some physicians still present information and recommendations to the patient which are heavily biased in favor of their own treatment specialty. We believe that physicians should be aware of treatments that are inappropriate for a given patient and inform the patient accordingly. M.D.'s need to act as Medical Detectives working for the patient to establish an accurate disease profile as it is discovered through adequate and appropriate staging, including obtaining a second opinion on the pathology report by an expert prostate cancer pathologist, and by using the available investigative tools (bloodwork, imaging, etc.) to determine whether or not the disease is organ-confined prior to discussing treatment options. It is the patient's responsibility to understand the need to obtain second opinions and to be completely informed regarding their options and the potential consequences of their disease management decisions. It is often difficult for patients to get information from their doctors regarding sensitive issues. Many doctors don't initiate any discussion, for example, regarding the need to stimulate erections during the treatment recovery period in an effort to avoid penile shrinkage and preserve potency. In fact, some physicians tend to minimize these sorts of issues, whether due to embarassment or time constraints. Physicians should not presume that they best know their patient's priorities, nor should they automatically operate on the presumption that the patient's first priority is to be completely cancer free, when in fact the patient may favor quality of life over quantity of life. Determining the goal of any therapy being contemplated is a part of the patient's right to freedom of choice and some patients do opt to adopt disease management strategies that are designed to control their cancer rather than to eradicate every trace of cancer regardless of the quality of life consequences. My co-author and I developed the Primer in an effort to present an accurate and unbiased educational tool to benefit patients diagnosed with prostate cancer and to help them make treatment decisions that are designed to maximize outcomes. Recent research has demonstrated that patients who get adequate and accurate information about their disease experience less anxiety and are better able to deal with their disease. We counsel patients not to rush into a treatment decision out of fear, but to take adequate time for education and interaction with other patients in an effort to avoid making a hasty decision they may live to regret. Patients would be well-served if the medical community would concentrate appropriate efforts on producing proper educational materials for patients for all types of diseases and conditions. If physicians had proper educational tools available to them in printed form as well as on websites, any patient with the need to obtain proper information about a specific disease would have a way to obtain all the pertinent information needed to make informed decisions without overburdening doctors by taking up too much of the valuable time that physicians need to spend on treating their patients. It should not be presumed by physicians that patients are so frightened and confused that they can't understand well-written and clearly presented information and that they lack the intelligence to sort out controversial issues in regard to their disease. Dr. Strum and I believe that properly educated patients should take responsiblity for participating in their own disease management decisions, working as part of a team with the help of their physicians and their loved ones. We believe that empowerment through education banishes fear and ignorance and helps to maximize outcomes for the patient. We need to educate both patients and doctors regarding these important issues regarding the doctor/patient relationship. Donna Pogliano Co-author of "A Primer on Prostate Cancer, The Empowered Patient's Guide" Competing interests: Author of this response receives royalties as co-author of the book "A Primer on Prostate Cancer, The Empowered Patient's Guide" published by Life Extension Media. |
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Dr.Herbert H. Nehrlich, Private Practice Bribie Island, Australia 4507
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Dr.Papagiannis forgets one most important point. He asks how much a patient can learn in a short time about his condition (implying that the doctor is the one best qualified to make decisions concerning the patient's welfare). Ingelfinger's wisdom notwithstanding, no doctor will find a more motivated more powerful force than the sick patient. This patient is quite able to learn astonishing amounts of medical fact in no time at all. Fear and anxiety are very strong drives and self-interest our best survival tool. The final outcome is bound to be better if doctor and patient join forces. Seeing the patient as an undereducated, not-too-bright number makes only the doctor feel better. Competing interests: None declared |
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Ruchir D Trivedi, Masters student in Nephrology, University of Sheffield northern general hospital, herries road, sheffield S5 7AU
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Dear sir, It was stimulating to read richard smith's editorial "abusing patients by denying choices". Needless to say, giving choices to patients is paramount as they are the pillars of our profession. ----------------------------------------------------------- Confusion is universal to mankind and nature is full of variability. Our experience of evidence based medicine is fulfilling but in no way considered perfect.When we ala-carte' the choices to patients and try to explain them about interventions in its holistic view , we must realise that patients are in terrible receiving position as we expect them to understand the procedure and treatment from the current evidence almost instantaneously. This hardly happens the way we think. Shifting onus entirely to them adds pressures in their already stressed life. Patients participation in overall treatment is encouraging but at the same time on the name of patients' choices, we are distancing ourselves from essence of patient care, social & psychological support. ---------------------------------------------------------- There are studies suggesting patients' choices are distinctly different from doctors' choices. when we encourage our patients to make choices for them, we must attempt to find out if they want our help to arrive at the most appropriate choice at that point. when editorial uses words like "abusing our patients" it feels intimidating for most doctors reading this in far corners of the country who are enjoying close decision making process with their patients, may be without bothering them with all available options. --------------------------------------------------------- I believe you have asumed that doctors across the board will give optimum evidence based information to patients and they will select out of it the right choice which suits them. There is no agreed defination of optimum information and no method of information dessipation is considered perfect in research. Patients are from wide educational, social and cultural backgrounds and their perception of illness and medicine are distinctly different. So-many times we are encounterd with patients who seek guiding force in us and just telling them the evidences or giving them leaflets are not sufficient. ----------------------------------------------------------- AS we are sitting in the responsible chair it is our duty to make choices, atleast when we feel our patients need that support and when asked for. Evidence based medicine has placed personal experiences at the footnote and we have traumatised the concept of holistic care to some extent. As with everything we must try to achieve this transition to patient controlled care gradually & carefully involving different ethnic groups . More and more research into patients' preferences are required. Placing maps in the city does not necessarily mean no one will be ever lost. --------------------------------------------------------- We require uniformity in our approach. At this moment there is no surity that patients walking in different clinics at different time with different consultants will receive same information with same level of empathy , based on which they decide their choices. More patient involvement in care should not compansate with social detachment of doctors. Mere presence of doctor in decision making process does not gurantee his involvement. We still mean little more than prescribers of tablets to most of our patients. There is a fine line between "patient opinioned care" and "patient involved care". competing interests: none declared Competing interests: None declared |
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manan vasenwala, consultant-cardiologist k.k.heart center, aligarh-202002.india
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in theory, this is a good concept but not practical. all diseases have different methods of treatment. but usually, the physician is most familiar with one or two methods. although different modes of treatment are available, based on patient history not all modalities may be suitable for the particular patient. the older physicians who are more mature may stick to older more tried forms of treatment. while the young may be more reckless with the newer modes but really untried in the long term. many newer modes of treatment highlighted in many reputed journals may fail the test of time and present with dangerous side effects and have to be withdrawn. similar forecast can be made regarding the treatment of sarcoidosis.if it withstands the test of time it will rapidly appear in all major texts.steroids are being used as no other forms of treatment are available and that too as symptomatic treatment without producing a cure. in general, i find patient's knowledge of medicine is limited to what they read in newspapers or readers digest etc, and lenghty discourse can only confound the matter. in actual fact, most "wmd" i.e. weapons against modern diseases consist of drastic change in lifestyle and there is no choice here for all. Competing interests: None declared |
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Aanand D Naik, RWJ Clinical Scholar, Yale Medical School New Haven, CT 06520
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While I am in complete agreement with Dr. Smith regarding the imperative need for shared decision making as the key element of patient- physician relationships, I am a bit troubled by the use of "abuse" language. The language of abuse and rights anchors the discussion within the sphere of professionalism, codes of conduct, and physician obligation. It is precisely this doctor-centered paradigm, however, that created the "abuse" in the first place. No fair-minded individual will disagree that professional obligations are important to maintain, but patients' needs and values, articulated through patient choice, must replace professionalism as the guiding principle of medicine. Those researchers, administrators, policy experts, and business leaders leading this paradigm shift must began to move away from ethics and legal doctrines. They must look to other fields to construct a language of choice, decision making, and cost-benefit analysis. Despite many academic physicians' grumbling, that will lead us right to the door step of the entrepreneur, who has always been the engine of human choice and human capital. Competing interests: None declared |
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G Vetrugno, Forensic pathologist Catholic University Medical School, Vetrugno Giuseppe, D'Aloja Ernesto, Luongo Achille Manfredi, Volpe Massimo, Scorcelletti Leonardo
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Dear Editor, the patient's freedom of choose among different treatments offered by the personal physician is one of the goal for the modern medicine. The informed consent is considered the solemn expression of the former statement. Nevertheless, without pointing the difference between formal and real freedom, we think it is useful to recall the lecture of Daniel Callahan's book 'False Hopes'. In the history of medicine, after 2000 years of paternalism, the age of autonomy started on the second half of 60’s. In this age, we persuaded ourselves that a patient informed about the possible treatments for his illness could be considered able to take a really freely expressed decision. This will should be considered a doctors' must who could be even legally persecuted for a different therapeutic behaviour. In this cultural environment, the National Health Systems (N.H.S.) became the instrument to satisfy all patients choices (the Italian N.H.S. was established in 1978 using the English model). In Italy, the clearest evidence of this approach was what happened in 1998 when an alternative cancer treatment (the “Di Bella therapy") was requested by the way of a popular demonstration. Despite there was no scientific evidence about its efficacy, the Italian N.H.S. decided to pay it for all terminal patients that asked for. In particular, the highest level of the Italian Courts ratified the patient's right to be treated with every therapy that could let him feel psychologically better. Exasperating this logical statement someone suggested to let the N.H.S. offer even expensive food (like Oysters and 'Champagne') and any other performance of benefit to the general well-being of a patient. It is clear that a similar system would fail soon. The continuous increasing of health care expenses should not allow any more the free choice both of the patient and the physician. At the end of the 90’s, the age of parsimony started in medical care. Choices about treatment could be done only within a budget unless the patient could pay by himself the cost of the therapy (for example by a private insurance) The need for reducing health care expenses induced the Italian government to select a list of essential treatments to be supplied by N.H.S.: the financing of different therapies was excluded. Now, this is the question: where is the real freedom of a patient? And where’s the physician's one ? Should we consider both of them a myth today ? Competing interests: None declared |
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Julia C Grier, [patient] Belfast, N Ireland
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I appreciate the author's response to my plea for the relatively new and untested treatment for sarcoidosis, namely, minocycline backed up with Olmesartan medoxomil. It is quite conceivable that one day we will find that the long-term high-dosage use of angiotensin receptor blockers causes unwanted side effects not evident in the short trial they have so far had. That is the stand my endocrinologist takes, and I respect him for his view. However, I would like to make one point. The side-effects of long- term use of steroids are well-known already, and to my mind, completely unacceptable, yet steroids continue to be offered. The effects of continuing sarcoid inflammation in the various organs of the body are also already known, and appear to be equally unacceptable, yet they are permitted to develop, while I am being endlessly tested and "monitored" by five different hospital departments. So when my doctors are offering these two options, steroids or doing nothing, I am going to have a rough time either way! That's why I'm prepared to risk this new treatment, which may or may not prove to have side-effects (but which is giving dramatic relief to many patients in the trial), in preference to the proven effects of the other options. That's why I plead to have some say in my own treatment. Competing interests: None declared |
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Stephen J Beazer, patient Scarborough YO12 4UH
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Mr Vasenwala’s view on Sarcoidosis seems very popular with most doctors. The view being, there is no cure therefore we have no alternative but to palm the patient off with steroids. End of story. Maybe some patients are happy with this and trust their doctor to do what is best. Let me remind you when first diagnosed we are told “ It’s a very rare disease, we don’t know how you got it and we don’t know how to get rid of it”. To leave a doctors surgery armed with so little information gets the mind demanding more. ___________________________________________________________ To quote Dr Herbert H Nehrlich post from 18/2/04 “Dr.Papagiannis forgets one most important point. He asks how much a patient can learn in a short time about his condition (implying that the doctor is the one best qualified to make decisions concerning the patient's welfare). Ingelfinger's wisdom notwithstanding, no doctor will find a more motivated more powerful force than the sick patient. This patient is quite able to learn astonishing amounts of medical fact in no time at all. Fear and anxiety are very strong drives and self-interest our best survival tool. The final outcome is bound to be better if doctor and patient join forces. Seeing the patient as an undereducated, not-too- bright number makes only the doctor feel better.” _________________________________________________________ Of course the patients “general” knowledge of medicine is limited but we the sufferers can dedicate our full attention to Sarcoidosis which obviously a GP cannot. Contrary to Mr Vasenwalas belief I do not simply obtain information from newspapers etc. We sufferers have access to evidence based history through fellow sufferers experiences and this enables us to help each other especially when there are so many unanswered questions. As any doctor should agree practicing medicine is based on previous experiences and with so many people experiencing remission (2) by an alternative therapy surely doctors around the world should be sitting up and taking notice. There also seems to be a dichotomy between "stands the test of time" and "will rapidly appear in texts". Sarcoid patients are suffering every day, and can't understand why the "test of time" might be required. And just how long a time will this "test" keep the sarcoidosis patients suffering? Research is being done right now and sufferers are seeing results. This kind of research is invaluable and is the only progress that is being made to improve the lives of all sufferers. As pointed out in my previous post the alternative (1) is far safer than steroids which is not the answer. I also find it hard to understand why any physician would assess that there were “dangerous side effects” likely with low-dose Azithromycin & Minocyclin or Olmesartan. Maybe someone could enlighten us on what they are. Of course there could be a theory that the patients are trying to tell the doctors how to do their job, this is not the case, but may I draw your attention again to my own diagnosis “ It’s a very rare disease, we don’t know how you got it and we don’t know how to get rid of it”. How this comment can be made initially then the same doctors say “ We know what is best for you” is hard to swallow along with the steroids which DO have dangerous side effects. The sooner both parties are able to work together on subjects such as Sarcoidosis the sooner we may all see some positive results by not being denied the alternative. ________________________________________________________ 1. Marshall TG, Marshall FE:Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews, in press, doi:10.1016/j.autrev.2003.10.001 Available from URL http://dx.doi.org/10.1016/j.autrev.2003.10.001 Accessed Feb 15, 2004 2. Marshall TG, Marshall FE: Antibiotics in Sarcoidosis - Reflections on the First Year. JOIMR 2003;1(3):2 Available from URL http://www.joimr.org/phorum/read.php?f=2&i=38&t=38 Accessed 16 Feb 2004. Competing interests: None declared |
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Diana F. Pargeter, retired statistician Cambridge CB1 6ED
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Abuse of patients does not always start with a doctor denying access to alternative treatments. It may be that the doctor is unaware of, or is not prepared to admit to, the existence of alternatives. A teacher is never a good one until he (or she) can admit that occasions will arise when a pupil will know more than he about some aspect of the subject he teaches. The good teacher will listen and learn. Likewise, a doctor may be able to learn from his patients, and should keep an open mind. Doctors are busy people, and even the specialists deal with a variety of illnesses or manifestations of them. How can an individual possibly keep up with all the latest research in them all? A patient, concerned about their own particular problem, may be every bit as intelligent as his doctor, just as capable of learning medical terms and understanding research papers, and have a huge amount to gain by investigation. Most patients are curious beasts, and some of them find out everything they can about their condition, the prognosis and possible treatment. One example of this is the way British patients have found out about Dr Marshall's new protocol for treating sarcoidosis, mentioned by earlier contributors. The rationale behind it is backed up by solid research, and as a statistician I find the ongoing successes impressive. It is possible that side effects could become apparent in the future, but there is, as far as I know, no other real treatment working against this disease that flares yet stays smouldering in the body for years. (Steroids have been prescribed for many years, yet these only suppress the symptoms, definitely have serious side effects and hinder the immune system from doing its job.) Thus, we find patients clutching up-to-date, potentially important information about a disease that can kill, turning up in waiting rooms. Assuming that the doctor knows nothing about the research, what happens next? If the patient is lucky enough to enter a "good" doctor's consulting room, he will listen to a potted version, take and read the papers, discuss the pros and cons and quite likely support him in trying the treatment. At the other extreme, a "bad" doctor will dismiss the whole idea without listening to what the patient is trying to tell them, and perhaps take the papers as a sop but never read them. If this is because he has come across lots of cranks, or is very busy, he has some slight excuse. If (as it feels like to the patient) it is because he is arrogant, thinks the person cannot offer him anything worthwhile and therefore will not listen or read, then that is abuse. Competing interests: None declared |
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Barbara R. Parker, Patient Advocate Duke Medical Center (27710) USA
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Might I suggest that a patient's first choice ought to be whether to participate in decision making or not. If physicians first query a patient about whether s/he wished to be involved in decision making with the physician, or would rather that the physician make recommendations based on good medical judgement, expectations would be clear and the process could move forward with fewer frustrations, misunderstandings and assumptions. Patients of both varieties exist today and asking the question first would get any medical discussion off to a good start. Competing interests: None declared |
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John S Shackcloth, Patient Ipswich IP15AN
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I've followed with interest the responses bemoaning the lack of awareness /interest by the medical profession in the use of Anti Biotics as a treatment for the the Auto Immune diseases. I'm also concious of the amount of Auto Immune sufferers who would welcome more information on the availability of this treatment, which has enjoyed so much success in America for some years, in the UK. Therefore I am trying to get a ‘feel’ for the numbers of UK sufferers of the Auto-immune and Rheumatic diseases who are ( or are considering ) treating their conditions with Anti Biotic Therapy. If there are enough of us, I believe that it would be worth setting up a UK group with the objectives of raising awareness of ABT in the UK, exchanging UK relevant information, and the creation of a database of UK specific Anti Biotic knowledge for the benefit of any interested patients and hopefully, members of the medical profession. The ideas and objectives of the group no doubt can be added to and improved upon as we go along, but initially, if you would like to be included in such a group, please email me at Johnss@btinternet.com I imagine useful information at this stage would be Name, Length and nature of Illness, current treatment, County and contact details. Also further suggestions for ideas and objectives for the group are welcomed! John S. Competing interests: None declared |
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Pepi Granat, MD, Solo practitioner; Clinical Professor of Family Medicine, University of Miami, South Miami, Florida, USA
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My, my. How hysterical and pejorative we are, accusing doctors of abuse, who believed the evidence available at the time, in advising all women to take hormones. How will you editorialize when future research (if ever done in this climate) shows that the present “best evidence” was full of holes, and that in fact, estrogen (in the right dose with the right vehicle for administration) does confer long-term benefit? How have we allowed epidemiology to preempt clinical judgment so completely? Those of us who treat women are not agents of drug companies, and we see what epidemiologists do not. But even going by epidemiology alone, the present conclusions are not worth such certainty. Those "decision analyses" are only as good as the "garbage in". Menopause, itself, carries significant cardiovascular risk. By the time 10 years have passed after menopause, women’s cardiovascular risk approaches that of men. Before menopause, women’s risks are around 1/5 that of men, presumably because they have the protection of estrogen. Any woman who loses ovarian function (estrogen) for other reasons, such as surgery, radiation or disease, also acquires the same added risk. It is likely the lack of hormones that confers risk. Evidence comes from all directions, not just randomized controlled trials, although we often wait for those trials to give us guidance. 100 woman-years do not equal 100 years of a woman. Even though the type of progesterone used in the WHI (Women's Health Initiative) was an adverse one no one will die more on HRT (Hormone Replacement Therapy) , based on WHI numbers. In fact, the death rate (look at the bars on the chart of mortality) was slightly less on HRT than on placebo. Physiologically, and in countless human and animal studies, estrogen is important in conferring cardiovascular benefit, not risk. Events at endothelium and on lipids are clear, unless all those prior studies were wrong. The estrogen only arm of the WHI showed no difference in heart or breast disease. The famous HERS (Heart and Estrogen Replacement Study) which was done in women with known heart disease showed a net null effect on heart disease, with a trend toward benefit after 4 years on HRT, although there was a slight increase in the first year, largely because of a dip in events in the placebo group, making the treatment group show an increase in comparison. Most importantly, further analysis of the data in a subsequent publication showed a 35% reduction in new onset diabetes in women on HRT – and diabetes is now (newly) considered a heart disease equivalent. So HRT can be credited with preventing “heart disease” (diabetes) in 1/3 of women taking it. Extrapolation to individual women does not work for epidemiological studies, or even necessarily to populations, although they may be the only means for presumptive projections. But they are almost always off the mark. When events are rare or uncommon, most statisticians hold that any relative risk under 2 is not credible or real. There were only two definitive items of significance shown in the WHI study when one looks at the adjusted rates of the conditions studied (the first was well-known, the second, new): 1) That there were more venous thromboses (blood clots) and 2) That there were fewer fractures. See Table 4 in the original article. The breast cancer data did not reach significance, neither nominally nor adjusted. There was a “24% increase in breast cancer”, widely misinterpreted by both doctors and patients alike. The estrogen only arm showed a “23% decrease in breast cancer”. The important thing is that neither were significant. Both could have been chance alone. Many of us are using the information in a sane way, with lower estrogen doses, often by transdermal route, and minimizing progesterone total doses with longer-term intermittent dosing and better endometrial surveillance. We share with patients that we do not believe that the current hysteria and lack of definitive results, nor even the FDA’s conclusion that estrogen should not be used for long-term benefit, is correct. We present this to the patients and let them decide with us, what they wish to do. Competing interests: I have been speaking on my own re: HRT for many years. A few of these lectures were sponsored by Wyeth. |
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