I cursed a medical colleague last week when a notoriously anxious staff member burst into my office brandishing a sheaf of information sheets. Her surgeon had referred her to a haematologist to investigate an unexpectedly low platelet count. In the process, a low titre of antinuclear antibodies had also shown up. The haematologist had muttered something vague about ‘lupus’, printed off a whole lot of information from a website, and steered her towards the door. He invited her to return when she knew what she wanted to do about it. The haematologist probably thought he was doing the right thing: empowering the patient with enough information to make her own decisions. Where he had failed, unfortunately, was in not considering the impact that such an indigestible bolus of data would have on this particular woman. Rather than helping her, his ill-considered patient information sheets had added significantly to her problems.
Much has been written in the Australian literature about our obligations as clinicians to provide enough information so that any reasonable patient could make an informed decision about a procedure, as well as considering the particular information needs of the individual patient. Most Australasian surgeons are familiar with the ophthalmological case (i) that ended up in the High Court and gave rise to our understanding of the need to tailor our informed consent processes to the individual. There seems to be a growing trend, however, for clinicians to seek to abdicate their responsibilities to provide this information onto pre-printed patient information sheets. This is not on. A well constructed patient information sheet can be an invaluable aid to the process but it can’t do all the heavy lifting on its own.
When choosing a patient information sheet, there are several key points to consider:
Is it authoritative?
The sheet should be written by clinical experts and reviewed by peers who understand both the procedure being described and the clinical context in which we all work. Significant statements (such as the risk of adverse outcomes) need to be clearly stated and backed by the best available evidence. Your sheets will be shown to your patients’ families.
Is it complementary?
As the sheet is primarily an aid to the surgeon’s explanation of the procedure (with its risks and benefits), it should be written in a style that complements your own voice rather than clashing with it. Personalise the sheet by circling important information or crossing out treatment options that are not relevant to that patient. A great deal of efficiency can be gained in consultations when the sheet works with you rather than against.
Is it up to date?
Surgery is a rapidly advancing discipline and a patient information sheet is virtually out of date the moment it leaves the author. It is important to keep an eye on the revision dates of individual sheets and throw out any that are out of date. Better still, keep your sheets filed electronically so that they are easy to find when you need them and wastage is minimised when an updated version arrives. Storing your sheets electronically also allows them to be customised to your practice, increasing the link between your authority and theirs.
Is it comprehensible?
It seems blindingly obvious but a good information sheet needs to be written in language that can be understood. Surgeons working in multicultural areas might consider getting their sheets professionally translated. Even if your patient reads English, it is recommended that written information be pitched at the level of a primary school student (ii). A number of readability indexes are available and most are based on the structure of sentences rather than the use of technical jargon. This article, for example, only has a Flesch reading ease score of 43.3% and the reader would have to be a senior secondary school student to handle it. The INFOrm4U patient information sheets with which I am associated score around 60% (readable by junior secondary school students). Lincoln’s Gettysburg address scores 79.1%; Mr Rudd’s “Sorry” address scores 48.8%. The average score of articles in the ANZ Journal of Surgery was recently found to be 18.6% (iii).
Diagrams are equally important in assisting health literacy. A complex, multicoloured and too anatomically correct picture may confuse a patient who has no frame of reference. Any surgeons who have taught anatomy to medical students in theatre will be familiar with the befuddlement of a person being confronted with too much complexity too early.
Is it comprehensive?
This is a difficult balance to strike – including enough pertinent information without overwhelming the patient. Piloting, peer reviewing and revising the text several times may be necessary. A good medical editor can help to ensure that the writing is accurate and concise but only experienced surgeons can really be sure that the content is appropriately inclusive.
Is it free of bias*?
Patient information can be biased in very subtle ways. Some patients will produce printouts from websites that are clearly promotional and can be dismissed as such. At other times, authors can unconsciously coerce patients into one particular course of action by writing their information sheets so that one management approach is favoured over others. Of course, it is the surgeon’s role to indicate which course of action is in the patient’s best interests where appropriate, but a sheet cannot make that clinical judgement on your behalf.
In summary, a good patient information sheet makes the surgeon’s job easier and more effective in enabling patients to make the decision that is in their best interests. The fact that it may also help build stronger doctor-patient relationships, reduce medico legal risk and contribute to the satisfaction of both patient and doctor is a benefit we can all enjoy.
Author: Professor Stephen Trumble Chair, Editorial Board Specialist Management Services
i Rogers v Whitaker (1992) 175 CLR 479
ii Paasche-Orlow MK, Taylor HA, Brancati FL. Readability standards for informed-consent forms a compared with actual readability. The New England Journal of Medicine. 2003. Vol. 348, Iss. 8; pg. 721
iii Hall JC. The readability of original articles in surgical journals. ANZ Journal of Surgery, 76 (1-2), January 2006 , 68-70(3)
* Steve Trumble is Chair of Specialist Management Services’ Editorial Board.
This article was first published as an insert in the November 2008 edition of Surgical News.