Be clear, precise and don’t forget about hope

7 December, 2016 Emeritus Professor Stephen Leeder 0 comments Read Later

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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?

Earn CPD Points: How to Treat - Subfertility and IVF

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.

Related News:

• IVF success rate claims 'misleading': ACCC
• Baby-booming: the business of IVF

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.

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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

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Prevent or perish - the choice is ours

PUBLIC HEALTH OPINION   111111m1111

BY PROFESSOR STEPHEN LEEDER, EMERITUS  PROFESSOR

PUBLIC HEALTH, UNIVERSITY OF SYDNEY

HPV vaccine has transformed the prevention of cervical cancer.

We eliminated smallpox and perhaps we will yet dispatch polio. The dreadful infectious diseases of childhood are  much

diminished, at least in affluent societies. These good news items about prevention are welcome.

Prevention must be safe

But prevention can readily get a bad name. The controversy over statins - resolved in their favour only recently in a massive review of randomised trials published in the Lancet - illustrates how easily preventive strategies can be blown off  course.

The late, great epidemiologist Geoffrey Rose pointed out that while taking a risk on a treatment and suffering side effects may be tolerable when you are ill, this is not so with prevention. Here, we are dealing with well people and if we place even one in 1000 in jeopardy by our preventive intervention, the red flag will be waved, publicity will follow and the intervention will likely be abandoned.

The anonymity of prevention

Prevention suffers further - from anonymity. A preventive intervention in the community, such as separating the drinking water supply from pollution or removing a 'black spot' intersection from a highway, will save lives. But who are the people whose lives have been saved? We will never know. The ·grateful patient' is

not a person whose disease has been prevented, but rather one whose life has been saved through effective treatment.

,The matter of anonymity goes.further. Consider taking a drug that lowers blood pressure. Not everyone with elevated blood pressure who does not take the medicine will suffer   a

consequence. Not everyone whose blood pressure is lowered because of treatment will get a benefit. This muddle - some treated develop problems, many untreated don't  -  diminishes the credibility of prevention. We all know smokers who lived robust lives until they were 90 and we all know people who died before age 55 who were svelte, vegetarian, non-smokers who never sat down.

It is important to understand these attributes  of prevention if  we are to work out how to give it support. Simply put, there are few votes in prevention. Think suicide. Because prevention is anonymous and unpredictable and incomplete, it is unlike new surgical units, rescue helicopters and knee replacements. It is politically  intangible.

But what to do about today's epidemics of chronic disease?

And yet. The perfectly reasonable question about our current and future disease profile is this. Given its magnitude and its clear association with where and how we live our lives, and the evidence that its incidence can change with changed environment, will we choose to offer health care endlessly to an ever-growingnumber of people who have succumbed to these chronic problems, or will we move our investment in health care, and lend our political weight, to programs that seek to prevent these problems?

I recently printed three documents about obesity. They weighed 1.8 kilograms. Two were prepared by consultancies

- McKinsey and PwC - and the other came from the World Health Organisation. McKinsey, after a thoroughgoing analysis of the prevention literature , argued pragmatically that we should develop obesity preventive strategies that contain every intervention from childhood to dotage that has even a  trace

of evidence that it works. Put prenatal and early childhood interventions with adult cooking classes and food labelling and city planning and cycleways and readily available fresh food.

Social determinants

Sir Michael Marmot, an epidemiologist from London, has given this year's Boyer Lectures on the ABC. In them he urges us to look for the 'causes behind the causes'. A Sydney University graduate, he is now president of the World Medical Association and was previously , among many other things, President of the British Medical Association as well. He argues that the enemies of good healthcare are injustice and poverty, and to do nothing about them is a dereliction of medical duty.

The AMA strikes back

Before the last election the AMA called for a national strategy for prevention, a systematic approach to supporting efforts to reduce our dependence on the towing truck service of medicine in dealing with chronic and complex diseases and to favour prevention.

We need it - urgently.

As doctors we would do well to remember our roots. Long before we had effective remedies we were all public health physicians and much kudos helped develop the status of medicine because of our preventive agility and ability.

Lots to do here, and we need the help of the community and politicians in tackling 'the causes of the  causes·.

  Published in Australian Medicine 17 October 2016 http://bit.ly/2eDwGik

The healing power of words

Rebuilding your personal identity after a serious relationship breakup can be like assembling a piece of IKEA furniture, argues Ethan Kuperberg in a humorous one-page article in the September 12 issue of The New Yorker titled 'How to put your Sëlf together.'  Leaving your Sëlf unattended during re-assembly "can result in injury, error, or [worst of all] poetry."  So should doctors have anything to do with this traumatic consequence called poetry?

To our ears poetry is foreign although in other times and places it was familiar. It is not the language of business, politics or science.  Instead it links to art, drama, sculpture, and music, especially to song.  It enables feelings of love and loss, of ecstasy and sadness not easily otherwise expressed to find a voice. The contrast of prose and poetry is incomplete and prose can of course be brilliant as a vehicle to carry these feelings.  Also, overlap occurs between prose and poetry, and 'prose poetry' follows. But poetry has unusual strength for this communication.

Because there are many forms of poetry - long and short, rhyming (simple or complicated), tightly disciplined or free, inscrutable or accessible, concrete or abstract - there are many definitions, none entirely satisfactory. Despite the variety in poetry and its definitions, several common features can make it attractive to doctors.

First, poetry can express our deep feelings when patients or family or friends suffer and die. It enables these feelings to be explored, articulated and shared without the heavy transactional processes of prose. Doctors whose encounters with death and suffering are common and profound use poetry to express their feelings. Patients and carers do likewise.

Second, poetry can enable the expression of achievement - liberation, cure, safe birth, the lifting of depression - that are not enumerated in key performance indicators that tend to reflect processes and financial efficiency expectations of the clinician. It can share an elemental connection to love and happiness that bypasses the bureaucracy of measurement and computation.

Third, poetry reveals deep things about the shy poet and his or her subject that he or she would find difficult otherwise to share, uncovering the soul in its naked austerity.  Not all doctors are extroverts, not all express their feelings openly. They may be more comfortable speaking from behind the veil of poetry.

It is a mistake to think that poetry is simply random jottings that require little effort. In fact, it is an art form that carries its own discipline like learning a musical instrument. I have benefitted from membership in a poetry writing group that meets each week with an expert tutor to share poetry and critique one another's efforts.  I have come to enjoy the way poetry makes me consider and savour each word, and the fellowship of poets from different backgrounds. It is rich in metaphor, analogy and simile and light on description, depending more on evocation, suggestion and impression. 

The great Irish poet Seamus Heaney had a brilliant talent for turning words, like diamonds, through ten or more degrees allowing the light to diffract into new colours, astonishing the reader with their novelty. Take for example the first stanza, especially its brilliant last line of his poem 'The Sharping Stone':

In an apothecary's chest of drawers,

Sweet cedar that we'd purchased second hand,

In one of its weighty deep-sliding recesses

I found the sharping stone that was to be

Our gift to him. Still in its wrapping paper

Like a baton of black light I'd failed to pass.

Poetry allows me to search my mind for interpretations of events and people that are not immediately obvious.  Others might access these insights through meditation, but for me, sitting at the laptop with no more than the germ of an idea of the poem and then watching it emerge, expands my understanding of those events and people.

The Scandinavian Nobel laureate poet Tomas Tranströmer suffered a devastating stroke in 1990, leaving him hemiplegic and without speech.  His recovery was gradual and never complete, but he returned to playing the piano with his left hand. He returned to writing short poems.  I wondered about his experience - lived as it were from the inside.  So I wrote a poem, beginning with the confusion and disorientation of the acute phase of his CVA, as he might have experienced it. I tried to use his voice, his style, for this purpose. One snippet of this quite long poem, The Stroke of One, reads:

In a flash my spirit

was caught like a fish in a net,

my flesh pulled and spun

through an unfamiliar deep.

I do not claim that this poetic exploration was helpful to anyone, least of all Tranströmer, but I feel differently about the stroke experience as a result.  Maybe that makes me a better person to understand strokes in others or in myself if I were to suffer this fate.  You can find the complete poem on my poetry blog Stephenleeder.blogspot.com.au along with others from recent years.

Although I do not have the epidemiological evidence, it is said that poets are miserable people who often end their lives by suicide. The search for meaning and interpretation that underlies much poetry can be a manifestation of human alienation or depression.  But as a counterweight, read Shakespeare's sonnets or the Psalms of Degrees.  

As with art, drama and music, there is room for the expression of great happiness in poetry. The process of poetic reflection mines happiness from our unconscious like precious ore - it is free and for our pleasure!

Published in Australian Doctor 28 September 2016  http://bit.ly/2cBvJqm