Variations in healthcare

Postcode lottery or an understandable phenomenon?

Photo by Javier Allegue Barros on Unsplash

Medicine is not an exact science.

Take my husband, Den’s journey. Oesophageal cancer is known as ‘one of the bad ones’ in terms of prognosis and ease of treatment. There is much variation in management, because it is not just one condition. There are two main cancer cell types, which respond differently to treatment; the oesophagus stretches around 30-40cm from throat to stomach, and where a cancer grows along that length affects which treatment is chosen - some locations being more amenable to surgery than others. And the oesophagus is situated next to many important structures: the airways, the lungs, the heart. So the position of the cancer, and where it might be growing into or adherent to, will affect decisions about treatment. There is no ‘one size fits all’ approach here.

Having attended five different hospitals, we have seen differences in how things are done. At times this variation has felt unsettling.

At the beginning of his journey, I was struck by the use of specialist nurses in different centres. In the first hospital, Den saw nurses for everything -the initial camera test, the bad news, the subsequent test results and advice. We always found the nurses to be approachable and knowledgeable, especially about the rigours of living with a worsening cancer that affected swallowing, nutrition and so much more. They were a lifeline.

But they were not the main decision-makers and I struggled with the fact that Den did not see a consultant. Decisions were made in an MDT ( multidisciplinary meeting of doctors, surgeons, nurses, dieticians and other important professionals) and communicated to us by the nurse. Six weeks after his diagnosis, when things had become very tricky and we were still not close to a decision on the treatment plan, I begged the nurse for an appointment with a consultant. This was arranged, but had I not requested it, the first doctor he would have seen, since being referred by his GP on 2nd September, would have been the oncologist on 21st November: just under 12 weeks.

I did not find this acceptable: at least, not once things got tricky. Being this removed from the decision-makers is disempowering. Den felt like he had been relegated to nurse care because the consultants had given up on him. And in other hospitals, I now know that the nurse is not expected to be the one always giving the bad news, and the consultants make themselves much more available to have one to one discussions with patients. There is a balance to be had where doctors can delegate to other professionals, but removing the consultant completely from conversations with patients was , I suspect, never the intention when nurse specialists first came into the healthcare arena, and is not fair on the nurses themselves.

The question of whether Den’s cancer was curable was another area that was not clear cut, and there were differences of opinion. I must stress - with such a tricky cancer, these are difficult decisions to make. His cancer was deemed inoperable and a possible stray lymph node meant that he was potentially heading down a palliative ( incurable ) pathway. But attempts to sample the node to confirm it was cancerous had failed - it was too close to a major blood vessel. So I wrote to the MDT to ask them to consider giving the node the benefit of the doubt and try curative chemo-radiation. There were two reasons I did this. Firstly, we felt that if there was no definite proof that his cancer had spread, he should be given a chance, and this is what he wanted - even if the treatment was high risk with a low chance of cure. Secondly, the fact we had not been able to discuss his case with a consultant meant that we felt ignored, and writing to the MDT seemed the only way to make our point.

We were told that Den’s cancer was inoperable, so the treatment plan was chemo-radiation. In some centres, they would have offered less radiation with a view to operating after ‘down staging’ the cancer - called the three-stage approach. We asked about this at the time and were told that surgery was not an option. I now know that there are other centres that would have offered this. And the important thing to note is that there is no right or wrong answer here. Decisions about such major surgery depend on the experience of the surgical team, their own ethos in terms of how much risk to take, and even the hospital’s ability to ‘rescue’ in the event of post operative complications.

Brain surgeon, Henry Marsh, in his book, ‘Do no harm’, talks about this balance of decision making and the fine line between doing good and harm. He quotes a colleague saying:-

‘The operating is the easy part, you know … by my age you realise that the difficulties are all to do with the decision-making.’

We saw other variations: the followup after Den’s chemo-radiation was intially planned to be based on symptoms - ie no scans or camera tests, just arrange tests if he had worrying symptoms. I argued for him to have regular scans and camera tests. The research on the benefits of this was equivocal a the time: you don’t want to go looking for a recurrence if there’s nothing you can do about it. But we asked, are there any scenarios where you might find something that IS treatable? And when this was discussed in an MDT, it was agreed that early stage disease recurrence might be amenable to treatment. So they instigated three monthly tests. And thankfully, this is why early changes were found and he had options - and is here today.

When recurrent disease WAS found, the local surgeons did not feel it was safe to operate - too risky. But his oncologist referred him to a regional centre where they said all the things the first hospital said, about the risks of surgery, but that they were prepared to operate. This was what is called a ‘high volume centre’ - they do a lot of this sort of complex surgery and, being more experienced, are able to take on more high-risk cases.

Again, neither team was wrong, it was all about how much risk they were able to take.

The other variable is patients themselves: if you have two people with the exact same oesophageal cancer, in the same location, same cells, same structures involved, but one is frail and elderly and has multiple other health problems, and the other is young and otherwise fit, the latter one is more likely to be offered aggressive treatment, being less likely to develop complications. This is important, as many of the complications of treatment are life threatening in themselves, or at least quality of life threatening.

And on a long cancer journey like Den’s, a decision that was made at the beginning of the journey might be different 3, 4 years later, due to new developments and research.

Variation in approach is unsettling: there is no escaping the fact that there were points in Den’s story where, if we had not asked, he might have died from his disease. But these are complex decisions where many factors are taken into consideration. The expertise of the people in an MDT amounts to decades of training and experience, and this is invaluable.

So how can we minimise variation in the way people are treated?

Efforts to reduce variations include having national guidelines, and research priorities that focus on the ‘grey areas’ to work out the best approach and iron our inconsistencies. MDTs, where groups of professionals meet to make decisions about patients, are commonplace in cancer care now. They help to reach a consensus on the management of individual cases. In the case of oesophageal cancer, in the UK, there is also a national MDT for tricky cases - run by a charity, UKIOG, which focusses on trying to harmonise best practice. And cancer surgeons and oncologists keep abreast of new research and attend conferences where they share best practice.

What does this mean for patients? Well I would say that we need to be honest about the fact that there are differences in approach in different hospitals. This is not because some people are doing it wrong, it is related to the complexity of some cancers. Straightforward cases will be managed similarly wherever you go, as there is a strong track record, research, and protocols exist. But the trickier ones, the ones that don’t fit neatly into a box, the ones which would, until recently, have had no options, they are the ones where you will inevitably see variation. Pioneers in some hospitals will try things that push the realms of possibility and, if successful, other centres will follow suit once the evidence is there.

My advice to patients is ALWAYS ASK. While the variation in approaches was unsettling for us, the one thing that we always managed was to feel heard when we challenged the decision-makers. We didn’t complain; we simply presented our arguments. Obviously that was easier for me as a doctor. But there are some general ways that this can be approached by anyone.

1. Try and learn what you can about your condition - there are useful sources of information online, in particular Cancer Research UK and Macmillan. There are also false claims online so be careful where you look. But arming yourself with reliable information can fuel what questions you decide to ask your nurse or consultant.

2. Do look on the online groups for your particular condition, learn about how others have been treated. Be aware that individual cases differ for a multitude of reasons, but knowing about others’ journeys can help you to work out questions to ask your team.

3. If you don’t understand why a particular treatment , such as surgery, is not being offered, ask why. Ask if different hospitals would have a different approach. Challenge your consultant - they don’t mind - they want you to understand their decisions. Think of yourself as part of the team.

4. If you are being cared for in a hospital where nurse specialists are your only point of contact, it’s OK to ask to see a consultant if things get tricky.

5. Second opinions are your right. The GMC states, in its duties of a doctor, “You must recognise a patient's right to choose whether to accept your advice, and respect their right to seek a second opinion”. The vast majority of consultants would try their best to answer your questions, consider your arguments, and arrange a second opinion if you still want it after that.

Variations will always be present, and are more likely with complex conditions being dealt with at the forefront of medicine. Measures do exist to try to achieve consistency. But it’s OK, even expected, that patients should be involved in tricky decisions about their care.