Sunday, 22 July 2012

Managing expectations - not just the patients', but also the doctors'

N Engl J Med 2012; 367:99-101 | 10.1056/NEJMp1205634

All patients are different. But as a geriatrician, the presentation of my patients is often fairly standard: they either fall over, or become more confused. The challenge for any doctor dealing with such patients is to decide what particular factor has changed to lead to the deterioration. Most of my patients have multiple medical problems, many of them have dementia, and a proportion are instantly recognisable as being frail.

Any number of factors can be to blame, from acute medical problems, through breakdown of social support networks to psychological issues. And more often than not, when you first meet a patient, you can identify a whole range of issues that aren't quite right.

This kind of reality leads to a divergence in how doctors approach elderly and complex patients in hospital: on the one hand you have doctors who try to investigate and treat all of the issues that have gone wrong, and correct them all back to normal. And on the other hand you have doctors that work on the assumption that although there are many things that need correcting, some of these will have deteriorated as the result of another more significant issue, and some of these are beyond correction at all. These doctors, therefore, try to identify the main issue problem that has changed, correct that, and then see how the other problems respond to improvement in what you have guessed is the primary problem. .

The latter approach is the one that I have tended towards over the course of my training, not only because it is the approach that fits best with my style, but also because I have grown weary of watching patients patients experience complications and side effects from investigations and treatments..

It is impossible to tell exactly which patients will experience the pitfalls of iatrogenesis, but you can be certain that of all the patients who are offered treatments, it is my elderly, frail and confused patients who will experience the least benefit and the most inconvenience.

So why the long preamble?

Although my training and insights into geriatric medicine have encouraged me towards a more parsimonious form of practice, the truth of modern medical practice is that doctors are often rewarded for taking a more interventional or active approach.

I have often taken an expectant approach with my patients, only for other physicians to intervene and do something extra. At this point, one of two things happens: either the patient gets better, and the other doctors congratulates themselves for intervening, or the patient deteriorates, and the other doctor chastises me for not acting sooner. Sometimes they are right, but sometimes, the patients that got better were going to get better anyway, and did so in spite of the extra interventions; and sometimes the patients got worse, and did so because what we did precipitated a deterioration. not an improvement.
We know that a great deal of what we do to elderly patients causes harm. We are often flying blind when recommending therapies for the elderly, as there is very little evidence base: many of the big trials exclude the elderly from participation.

What modern medicine therefore adopts is a more is better approach, that while well-meant, is often not well-supported.

As doctors we are often overly influenced by our own personal experiences: for example, we know that doctors who have patients who suffer bleeding complications on warfarin tend to offer warfarin less often to their patients than the evidence-base suggests they should.

But the issue of over-treatment of patients raises some other issues in the care of patients: as the people who deal with sickness every day, patients look to their doctors for guidance on what they can expect to happen. Patients do not know how to best to approach their sickness, as they have never had to deal with it before. The doctor is both their technical expert and their measure of social norms: what do other people do when they are in the same situation? The tendency, therefore has developed for doctors to over-treat. Afterall, treatment is what doctors are trained to do, and if patients looks to doctors for guidance as to what they should do, then it should be no surprise that a tendency has developed to approach disease and illnesses with curative (and often aggressive) intent.

At the severe end of the spectrum, when a patient asks you how long they have left, I have to answer them honestly and say that I do not know: it is very difficult to take the overall percentages, and apply them to particular individuals, as we cannot know where in the normal distribution that particular patient lies.

The issue here is that patients are socialised to ask the wrong question: what they mean to ask, I think, is 'Doctor, what can I expect?' and instead of answering this question for them, which would be useful and informative, we fob off the question they did ask, and move on to areas where we are comfortable, which is the process of diagnosis and treatment options.

But by not answering the question about expectations, we are not giving the patients the appropriate opportunity to discuss with us what their style of dealing with sickness really is. Instead, they find themselves in a new situation of sickness, and understandably look to the people who deal with the sickness every day to guide their choices.

And here's the rub: we have got in to the habit as doctors, of just doing stuff to patients, rather than emphasising to them that sometimes not doing very much at all can be the best option.

It is particularly true of cancer diagnoses, but also of other chronic conditions, that if we acknowledge sooner that the illness cannot be cured,then patients can enjoy a longer and better quality of life, than if we dive in and try to cure them.

Doing nothing is not always the wrong choice, because it doesn’t actually mean doing nothing. What it means is that your doctor has admitted to you that the condition you have is one that you cannot be cured of. This of course covers a range of ills, from diabetes to metastatic cancer. But the realisation that this is something that will always have to be managed, rather than purged is an important intellectual milestone for patients to reach. Establishing the natural history of the particular disease for a particular patient involves careful, and honest, communication. .

It is only afterwards that a conversation can be held about what the best course of action is.

I suspect, although I don't actually know, that if we were better at having these kinds of conversations, our patients would have a better experience, and in many cases a better death. And with the particular group of patients that I deal with, that means a lot.

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