Variations in Healthcare 2

Some additional reflections based on questions from the last article, Variations in Healthcare.

Photo by Diego PH on Unsplash

In my last article, I talked about variations in cancer care.

In response to

Victoria

, I wanted to answer her questions and elaborate on our story a bit. Victoria’s questions were as follows, regarding the time I wrote to the MDT to ask for a different approach:-

‘Could you share the practical actions and format you used to do this - perhaps in an article? Is it a formal process or how do you know your request/information will be considered? Do you think a non-medical person's letter would have the same impact or taken with equal weight, as yours?’

Victoria made me think I needed to tell you more about the what, why and how of this part of our journey.

As patients, or carers, we need to be able to put out trust in our healthcare providers, but also consider ourselves part of the team, able to have active conversations so that we are empowered to make the right choices. And very often, this is exactly what happens.

It’s when that doesn’t happen that we might need to take a different approach.

What was the problem?

We were faced with a tricky cancer and delays in staging it. We were kept at arm’s length from the decision makers, and were feeling disempowered. After an equivocal result, the specialists would decide whether Den could have curative treatment, or would be placed on a palliative pathway, ie one where symptoms would be managed, but Den would eventually die of his cancer. We had spoken to one consultant only in three months, and he had been dismissive of Den’s chances of survival.

And the decisions were being made behind closed doors by the MDT ( multidisciplinary team): a team of doctors, surgeons, nurses, dieticians, and other professionals. The MDT system is essential and a normal standard in cancer care. But the only person who is not in these meetings is the patient.

Why did we intervene?

After the inconclusive test result, we knew the case would now go back to the MDT - another six days to wait for the next one. Den’s swallowing had reduced to liquids only and this was steadily worsening. It is no exaggeration to say that every day counted at this point.

So Den and I discussed it. We knew from what we had been told so far that they would either organise more staging tests, or decide that he was incurable and offer only palliative treatment. We knew if this was the case, that we could get a second opinion, but again, that would take time - a luxury we didn’t have.

We felt that, as there was no definitive proof that the stray node was cancerous ( ie no sample to look at down a microscope ) that they should consider giving the node the benefit of the doubt, and try a curative approach with chemo-radiation. I felt confident to ask for this as I had read some studies where they did still do that in SOME cases where there is a neck node. It’s complex though and I didn’t know if that could apply to Den.

If we’d had access to a consultant during this period, and been able to have an honest discussion about options, we would not have had to write to the MDT. If just one of the decision makers had spoken to Den properly, I would not have had to tell them the sort of man he was. And if we had not had so many setbacks in the testing period, we would have had more confidence in the team.

How did we intervene?

I already had the email address of the nurse specialist at the base hospital. So I wrote an email to her, asking her to forward it to all the members of the MDT ready for the meeting, and that, if anyone could make a decision sooner than the meeting, that would be, er , lovely.

I always think that an email not only allows you to put your thoughts in order, but creates a paper trail that might make the recipients feel more accountable.

My email was a bit technical - I am used to writing to hospital specialists as a family doctor. But the main thrust was, we can do one of three things here:

• consign him to palliative care based on an assumption rather then definite proof;

• do further tests to be sure of what his stage was, risking more time and advancement of the cancer;

• give the node the benefit of the doubt and crack on with a try at curative chemo-radiation.

I said that Den preferred option 3, that he was aware it was a high risk approach and that the odds of cure were very low and he might go through all that and have poor quality of life, and still die. But that was what he wanted. I told them, ‘risk-benefit equations are easier to work out if you know the man behind the scan’. I said ‘he wants to fight for his life if you will let him.’

They didn’t get back to me before the MDT, and we were told after - by the nurse again, of course - they’d had a heated debate with a 50-50 split. But they did agree to try the curative approach.

And he is still here today - but it was not straightforward: he developed many complications, and after becoming cancer-free, he did have recurrence, and surgery, and numerous other assaults on his body that some would not cope with.

So we stuck our necks out ( pardon the pun, in the light of the subject matter! ), and there were times when he was so ill, I wondered if we had done the right thing. But he’s still here because the team listened to us, and there was amazing alchemy, skill and care from so many specialists. Den himself is a stoic of the highest order, able to endure a huge amount of hardship, and I think we must have had a little luck thrown in somewhere too.

So that’s the What, How and Why. The arguments we presented in the letter to the MDT were, to us, common sense: I don’t think you needed to be medical to make those points. My job was to be Den’s advocate, making sure I always respected his decisions and needs, but also that I respected his medical team and their expertise - and I was at pains to do this in my letter.

But anyone could write to their team in the way I did. Mostly, you don’t have to, as things don’t get quite as tricky as they did for Den, and in most hospitals, by this stage you would have a relationship with your consultant and be able to have these discussions face to face.

Asking to go ‘off piste’ is not for the faint-hearted. The potential for harm with this high risk approach was enormous. And there was a more than 85% chance it would not work. I didn’t know at the time, but I do now know, from discussions with upper GI surgeons from different centres, that they too would have had the same approach as I asked for.

I know Victoria mentioned

Daniel Flora, MD, PharmD

. I would be interested to hear from him how such a story would have played out in an insurance-based system - would this have been a case of ‘insurers say no?’ Our British system has its faults , but I thank God every day that it is free at the point of use for everyone.

And one final note, for doctors and hospital managers everywhere, trying to run their services with dwindling resources - which I think is true in most countries now - it is always worth asking yourself the following about the service you are providing:-

1. Are you involving the patient enough in this journey so they feel empowered and able to make informed decisions?

2. Are the doctors in the team able to make themselves available enough to these patients, who are facing their mortality?

3. As a physician, are you are attending TO , or WITH your patients? Are you reaching a shared understanding with them?

4. Ask your nurse specialists, do you feel supported by your senior doctors, able to work autonomously when you feel able to, but to ask for support when you need it? Who should be the one giving the bad news?

5. Managers. - are you giving your clinicians enough power to organise their service to allow all of the above?

I know that the answers will vary from centre to centre, for a multitude of reasons, from general ethos and skillset, to funding availability, to the management of the larger organisation.

I hope this further article on the topic helps patients to feel empowered and doctors to reflect on their services.

For a fine example of a patient-centred doctor (and we met many on our journey too), I loved this:-

Letter to My New Cancer Patients:

And here’s the link to my original article.