When I see a patient in clinic and begin to prepare them for a big operation I tell them about the details of the operation, the potential complications and that they will be in hospital for a number of days, depending on the operation of course and the method of access (lap or open) and how well they heal and recover.
All patients accept this number, be that 3 or 5 or 7 or even more days, with little idea of what exactly they will be doing and why they might need to stay in hospital.Post operative courses vary and are unpredictable. They are not, to the mutual disappointment of patients and their doctors, linear. Instead they follow a bumpy path where the overall trajectory is from unwell to well but the gradient of the curve may take significant dips at times which are unpredictable and result in unhappiness for all.
I take a lot of time consenting people, medico legally this is is required and advisable but there are less detailed ways of doing it. Over the years I have encountered furious patients that “didn’t know” that half of their colon would come out with a right hemicolectomy or that they would be in any pain post operatively or that when I fixed their hernia I would go on to remove the large lipoma that was causing the bulge. So now my patients get to hear in graphic detail what I am going to do to them, what else might happen if I encounter an unexpected development, the consequences of it all going well (pain and bumpy road healing) and the consequences of it all going tits up (death, disaster, reoperation, prolonged stay).
This however, deals only with the patients themselves and their loved ones and families can frequently be in the dark about the seriousness and risks involved in a proposed operation. In the USA, where I have recently been, it is a very different scenario. There is no complication left undiscussed and information is given in written form. I have to say I like this approach a lot. There are no surprises down the line, nobody forgetting that impaired sexual function was ever mentioned and deciding to sue you.
I am not very good at communicating what normal healing entails though. I guard against and prepare for complications and disasters but I don’t explain what it is that happens when it all goes well and why that doesn’t translate into them feeling particularly well for a few days.
Time and the patient’s understanding are the main issues, I have found several resources on the internet that are excellent at explaining how and what to expect from a patient’s perspective and yet I have not incorporated these into daily practice. There is a rather nice App for the iPad only that I came across, which has delighted my 6 year old as she now has a better idea of what her mummy does, but I have failed to use it at work.
I tell patients that they will often feel great day 1 and will be euphoric and elated even but are likely to experience a series of ups and downs as time goes on. I am very good post operatively at reassuring them it is perfectly normal to feel sick, swollen, sore and lethargic but I often worry that they were not expecting it to be like this.
Getting people to realise that discharge from hospital will not correspond with them feeling back to normal is also important, it can take some patients months to recover from a major operation and some elderly patients will never regain their previous state of health (in the true WHO definition) after major surgery, despite being “cured” of their cancer.
All of this depressing news can be a lot to take on board when you are feeling optimistic pre-operatively, and you are told you should be feeling only positive. Patients and their families have a determination that they will beat cancer, relatives begin marathon running and cake baking to raise money, talk is overwhelmingly of winning and beating and in the middle of it all is me, telling you that you might be cured, it all depends on the nodes and even then it isn’t definite and that not only is the operation potentially life threatening, there are months of healing ahead of you. It’s all very off message, they want to drink some Aloe Vera juice like a friend did and be feeling right as rain soon.
There is a wonderful and potentially outcome altering trend for prehabilitation in major surgery. This involves what many people have done informally for years, telling patients to shape up before elective operations and to get fitter and thinner. In the NHS we have a wait before an operation (in my hospital this is about 6 to 8 weeks for a cancer- don’t be shocked American readers-I know how it seems) and this waiting time can be used productively.
There is an excellent paper in the BJS that if you are interested in this then I highly recommend to you, link is here. Prehabilitation is the future, “making the most of your wait” is what I used to call it, but Prehab is far catchier.
I often tell patients that they should consider their operation like the marathon de sables, you must prepare for it and expect it to be ruinous to your physiology. I encourage them to exercise and eat well in the lead up to it. “I do loads of exercise already” they all say, which is when I say “excellent, double what you have been doing”.
It’s not often that I get excited about something, but particularly in rectal cancer where they often undergo long course radiotherapy preop there is a window of several months to get our patients as fit as possible, as well nourished as possible, get them to stop smoking and drinking and attend to their many co-morbidities that may be untreated prior to the operation. If, as the BJS paper does not go as far to state,this prehab improvement in physiology translates into shorter stays, less complications and better long and short term outcomes this might be the most exciting that has happened since ERAS, and in fact is likely even more important.
I can do a beautiful operation, but the responsibility for healing and health is on the individual. Trying to communicate this to patients and getting them to engage with this idea is difficult but with a prehab programme it may become easier.
Additionally, there are longer term implications for health and wellness that by getting someone to stop smoking and take up exercising you may (with the right support) reverse old behaviours and have a healthier patient than you did before they had cancer.