Complications: Atul Gawande

This weekend’s reading has included this book. In fact, I haven’t read anything else. The last two chapters in particular explore the relationship between doctors, their patients, between patient autonomy and taking clinical responsibility.

Atul Gawande is a surgeon and writer based in Boston, Massachusetts. He has written several very popular books about the praactice of medicine, as well as delivering four Reith lectures for the BBC in 2014.

This is his first book, published in the UK in 2002. There are fourteen essays, grouped into three sections. The first deals with fallibility and error, and the second looks at the mystery of medicine.

The final four essays discuss how we manage uncertainty in medicine, the interface between clinical evidence and human decisions. The penultimate essay is entitled ‘Whose body is it anyway’. In this essay, he discusses some of the core issues of realistic medicine, fourteen years before Catherine Calderwood coined the phrase. In truth, consent and patient autonomy are not new, but having a banner under which to explore these themes has been powerful.

He discusses the gap between what patients want and what they hope for. His writing is straightforward, and his arguments are illustrated by cases, the stories that hook clinicians into the debate. He describes how honest clinical discussions allow patients to understand what is happening, and take their share in the decisions.

In his own words: ‘Just as there is an art to being a doctor, there is an art to being a patient. You must choose wisely when to submit and when to assert yourself. Even when patients decide not to decide they should still question their physicians and insist on explanations… You do the best you can, taking the measure of your doctors and nurses and your own situation, trying to be neither too passive nor too pushy for your own good.’

‘Where many ethicists go wrong it is in promoting patient autonomy as a kind of ultimate value in medicines rather than recognising it as one value amongst others. Schneider (The Practice of Autonomy) found that what patients want most from doctors isn’t autonomy per se; it’s competence and kindness. Now kindness will often involve respecting patient autonomy, assuring that they have control over vital decisions. But it may also mean taking on burdensome decisions when patients don’t want to make them, or guiding patients when they do.’

‘Even when patients do want to make their own decisions there are times when the compassionate thing to do is to press hard: to steer them to accept an operation or treatment that they fear or forgo one that they pinned their hopes on. Many ethicists find this line of reasoning disturbing, and medicine will continue to struggle with how patients and doctors ought to make decisions. But, as the field grows ever more complex and technological the real task isn’t to banish paternalism; the real task is to preserve kindness.’

The eternal balance between clinical evidence, being clear about outcomes and chance, giving patients the chance to influence the chances that they have and the treatments that they receive.

 

 

WHEN PATIENTS INVENT TO HELP THEMSELVES

It has been a long time since I blogged, but not for lack of ideas, more a deluge of concepts and ideas, combined with the ever-present day job.

Today, I read an article in the BMJ, (click here to read it yourself) and it has lit a slow fuse. The article is about the ultimate patient engagement, where individuals with a condition create solutions that revolutionise care. 

Patients really understand what it is like to live with their condition, to come to terms with how it will affect their living and their dying. Patients who have been given the opportunity to understand what their condition is, and how it will progress, patients who have time to focus on their own solutions, these are the people who are coming up with the solutions that healthcare industry had never considered. 

This is the ultimate patient engagement, where patients have found what is on offer doesn’t meet their needs, where the risks are unacceptable, or the outcomes just not good enough. 

The inventions covered include a new type of surgical prosthesis for aortic root problems in Marfan’s disease, a smart ileostomy bag that tells you when it needs attention, an app to self-manage repeat prescriptions and medication compliance, another IT solution that uses CBT to improve sleep, an physiotheraby device for hand rehabilitation. 

The people behind these innovations are all persistent, have really understood the issues they are trying to solve, and have been steadfast in their pursuit of developing and sharing their ideas for the good of people like themselves. For several, they comment that it has been a long, frustrating process. Tal Goldsworthy, the inventor of the aortic root device, comments ‘If I had known it was going to be this hard, I really wouldn’t have bothered’ – but never the less, he has devised a safer alternative to aortic root replacement, and 200 patients have been fitted with his device. 

What these innovaters have found in their paths to success has been a willing clinical supporter. In general, one of the key hooks is being able to show that the innovation makes for better care without adding complexity. 

The message – ‘if you are a doctor who believes in the technology, then two words are key: be brave’. It is so much easier not to do something, but with courage you can help technology to really grow’. Patients have their own lives to enhance, and that is a powerful motivator, but we need to be there as clinicians to make new ideas work.