Be clear, precise and don’t forget about hope
Collisions between the ethics of private enterprise and medical practice are common, and this is especially so with IVF.
Governments are reluctant to recognise it as an essential — rather than an elective — procedure and to fund it adequately. Consequently IVF clinics are heavily dependent on private provision.
Last month, an ACCC investigation into dozens of fertility clinics criticised some for their misleading advertising of ‘success' rates.
However, the problem of misleading information is not limited to the IVF industry and three lessons from the ACCC's findings can be applied across all specialties.
First, take medical communication and the use of clear language when talking to patients.
Commenting on the ACCC's investigation, Commissioner Sarah Court said: "Some IVF clinics used technical terms understood by industry participants, but which may be misleading to consumers without further clarification or explanation."
The question in IVF is: does the word ‘success' relate to becoming pregnant or giving birth?
Second, analogous to the accuracy of terms, is the use of numbers when making comparisons. Surely, best practice for the IVF industry would be to report the rate of completed pregnancies precisely and accurately?
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However, the report found comparisons were being made, without reliable numbers, between different programs.
Two recent BMJ papers that explored the use of the UK data in predicting IVF success concluded that ‘success rates' should take into account the individual attributes of patients attending different clinics.
This is because social and physical factors, such as obesity, influence the vitality of gametes, and adjustments to predictions of success need to take these factors into account, according to the Robinson Research Institute in Adelaide. This underscores the importance of precision as a principle of all good communication about probability and adverse outcomes.
Numerical estimates of success or adverse outcomes will be interpreted in ways that make sense to individual patients according to their experience of the world. Accurate numbers, rather than terms like ‘usually', ‘frequently' or ‘rarely', are a sound beginning for a clinical conversation.
For example, I am told that the chance of a clinical pregnancy decreases markedly with age — from about 50% per embryo transer for women aged 30 or younger, to 3% for women aged 43 and over.
This information can lead to important discussions and decisions.
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Last but not least, present in many clinical encounters, and strongly represented in relation to IVF, is the need for hope. And it is easy, in the haste of our clinical practice, to overlook the power of this emotion.
If we do not sense a patient's need for hope, vulnerable people will turn elsewhere. We should ask ourselves: "Is there absolutely nothing I can do or say to kindle hope for this patient?" The answer is rarely: "No, nothing."
Counselling need not be fictitious or inappropriate, but focused on possibilities beyond the immediate clinical problems.
When I was managing patients with end-stage respiratory failure, and hope was scarce, I would ask when the moment was right, "What gives your life meaning?"
The answers were often surprising. One man, to my astonishment, said: "Dancing!"
Although not on home oxygen himself, he told me, every week he would visit his neighbour who was receiving home oxygen, "and suck and suck on the oxy and then go to the club and dance until I dropped — and sleep all the next day!"
Together, in a spirit of hope, we explored how this might be made easier.
Distraught, childless couples will be looking for more than just clear words and bald stats. If that's all we offer, then don't blame them if they are attracted to advertisements or clinical conversations of uncertain quality that nevertheless hold out hope.
Exploring their lives in depth, things often come to light where hope might be kindled — that will help them see beyond their current predicament.
Offering hope is much richer and more complex than simply addressing the immediate problem.
We have much to learn from our colleagues in palliative care, who frequently refer to this skill as fundamental in their practice.
When my father was dying in hospital with multiple myeloma, I found him in unexpectedly good spirits one day. His physician had visited and tested his ankle jerks and found them to be in fine form.
The metaphor was powerful: there are things that are good and work well despite the gloom and horror of fatal disease and we need to keep them in view.
Professor Leeder is Emeritus Professor of Public Health at the Menzies Centre for Health Policy, University of Sydney.
Published in Australian Doctor 7 December, 2016. http://bit.ly/2ixxQgC
