John Dowling urges health professionals to engage in genuine shared decision-making with patients

I was first diagnosed 20 years ago with what was then termed intermediate-risk prostate cancer. I was referred to a urologist in private practice. He was not prepared to have me undertake surgery as he considered my cancer too advanced, albeit locally. So he referred me to a radiation oncologist, also in private practice, who suggested that at best I would have a 50:50 chance of curative treatment.

I am a biologist by training and after my diagnosis I tried to study the issues associated with prostate cancer for four months, and after five  “second opinions” I eventually proceeded with 3D conformal external beam radiotherapy.   Everything went well, in that my PSA went down rapidly to almost undetectable levels but four years later I had rising PSA and a relapse.   Since that time I have been on some form or other of androgen deprivation therapy [ADT]. I‘m now moving slowly into a metastatic phase.

When talking about shared decision-making we need to move beyond the words. I think it would be churlish not to recognise that, compared with the situation two decades ago, clinical practice has moved on and there is now more willingness by both the healthcare professionals and more desire among some patients to engage in meaningful shared decision-making about their treatment options.

However, if it is to be meaningful, shared decision-making needs to recognise the power imbalance between the healthcare professional and the patient. The professional has the skills, expertise and the means of delivering on the choices made. The patient is more often than not bamboozled, confused and fearful, and is seldom au fait with the implications of different treatments. But he has the prostate.

Sometimes a patient’s reasoning for a choice of treatment can be a puzzle. I recall a patient telling me why he chose surgery.  His wife had persuaded him that surgery would be a only few days in hospital instead of the 35 separate hospital visits which radiation therapy would entail. After he was discharged from hospital he was not a particularly happy to discover that his urinary incontinence took much longer than 35 days to come under even limited control.  We call it “buyer’s remorse”.

However, prostate cancer is probably one of the oncological conditions which allows the time necessary for genuine patient/professional shared decision-making.

Following prostate cancer diagnosis the patient has a genuine plethora of treatment choices open to him. If engaged in a shared decision making process, there will begin a process of risk assessment – a process which, If we strip out the strange language of health care professionals, patients are being asked to do dozens of times each day. Is it likely to rain and should I bring an umbrella? If I dash across the road, will I manage to avoid being knocked down by the rapidly approaching bus?

When a man has a cancerous prostate he wants to evaluate the likely impact this may have on his relationship with his partner; will he be able to have sex as before? Will urination be more frequent?  Will it affect his ability to earn a living or get that next promotion? Will he be cured?  Men are used to dealing with evaluating risk, so it is important to use language that does not obscure that ability.

Patients are sometimes like the starving donkey unable to choose between two equidistant piles of hay. Many are bewildered that they should even be expected to choose. Others are keen to evaluate the pros and cons of each treatment. Some patients find the strain of trying to decide more difficult than the treatment itself.

I would ask health care professionals whether they are using the full range of decision-making aids which might assist prostate cancer patients pick their way through the maze of choice. Many men are used to working with decision guides, decision trees and so on, in both paper and digital form – but patient use seems very sparse in prostate cancer decision-making.

To be frank, what passes for shared decision-making is, in practice, often acquiescence rather than a sharing.  A very few patients will take matters into their own hands but they may have formed very firm inclinations towards one treatment over another and may be misinformed. If there is genuine shared decision making, misunderstandings can be identified.

It would be advantageous if patients could be brought together with health care professionals in a multidisciplinary centre and participate in an interactive session about their treatment options. Patients would then perhaps feel more empowered to talk meaningfully to their healthcare professionals and to engage in a more genuine shared decision-making process.

If shared decision-making does take place, and the patient genuinely influences the choice, it is more likely that he will comply with the treatment choice. It also reduces the chance of “buyer’s remorse”.

I would suggest that shared decision making in prostate cancer may not be as widespread as many health care professionals think it is, However, matters are improving. While we may have come a long way since the beginning of the 21st century I believe that many patients remain of the view that we have a great deal further to travel.

Based on a presentation by John Dowling to the European Association of Urology Nurses on 19th January 2022