I’m in favour of patient attendance at the multidisciplinary meeting. The first time I attended one in October 2009, I felt quite humbled by the experience and got a secret thrill out of being the centre of attention. Wow, so many medical people looking at me and wanting to make me better.
Last time, though, in 2014, it was a more daunting experience. I had a recurrence and the meeting room seemed to have been turned into a theatre with me alone on the stage. I still think it was of benefit for a multitude of specialists to see me and my tumour but it could have been a lot more patient friendly.
Some question the need for the patient to be there. My story is not about that but about how I could have been a more switched on patient and how the hospital could have enabled that. I'm grateful for my life and the expertise that has kept me alive after four cancer diagnoses but my job now is to be a patient advocate. I'm all for participatory medicine where patients work with health professionals.
I wrote about being an e-Patient last week, concentrating on the time of diagnosis.
What are some of the things that stick in my memory about the MDM?
- There was a lot of waiting and we couldn’t leave to get lunch downstairs because the doctors might be back anytime. We were given a packed lunch. There was an apple. Apple! Head and neckers can’t eat apples!
- People were very respectful, asking permission to inspect my mouth.
- It was discreet. I didn't see any other patients.
- I saw my surgeon briefly before my turn to go into the meeting. In the corridor as we approached the meeting room he told me my CT scan showed two small round lymph nodes. Small is good and round is bad, I found out later. I had had no idea my scan showed any hint of a spread until that moment.
- I was probably scoped so that the doctors could see my lesion on a screen but I have no memory of the procedure.
- They argued about my case. The biopsy (showing an early cancer) was wrong some said. Someone felt it. “It’s lumpy,” he said.
- A dentist wiggled the tooth near the lesion, “It’s loose.”My heart sank and I crossed my fingers.
- My son was sitting in the front row. He put his head in his hands. A nurse patted him on the back.
- Afterwards the surgeon skedaddled as fast as he could but he did tell me that it would “not be as bad as last time.” When pushed he said he didn’t think the cancer had spread to my nodes.
- My son and I were left in the room to wait for a registrar who booked me in for surgery. It was going to be over a month away. He looked sad.
- A nurse had pushed a brochure about the “marginal mandibulectomy” in my direction. I pushed it back. I wasn’t having my mandible cut, I thought.
- The registrar, when he came in, told me that yes, a shaving would be taken off my lower jaw.
- I was calm. It was a shock to hear how big the surgery would be but I’d done my grieving about the recurrence prior to this meeting.
So, I had gone to the meeting thinking it was a serious situation because the cancer had recurred, but that it was only a very early tiny cancer.
I came out knowing that I would have the tumour cut out plus all the teeth removed on that side and a thin scraping of jaw. I would have a neck dissection of course and the cancer had possibly spread to the lymph nodes this time. And I had to wait another month or so to have all this done.
I tried to be an active and engaged patient but there wasn’t much chance of that. But here are some suggestions as to what could have been done better.
- Don’t have the patient alone on the stage?
- Prepare the patient for the meeting with written material but also by someone talking to the patient beforehand. Not a rushed consultation with a busy surgeon. Email contact?
- Inform the patient of relevant test results before the meeting.
- Either avoid arguing in front of the patient OR go the whole hog and include the patient in the discussion afterwards about health status and treatment decisions. (For patients who want that)
- Ensure a timely procedure for the patient to be debriefed after the meeting.
- Written material is good but needs to be combined with some spoken communication too.
- Tell the patient of any follow up appointments to explain more about the surgery. Make a more leisurely appointment for later.
I know what a delicate balancing act it is for the hospital to organise 10 patients and 20 health professionals to be together all on the same morning. But, phew, from a patient’s point of view it can be brutal.
A good thing was that a surgeon called me back after a week or so to explain the surgery in more detail. I appreciated that although I was horrified when he said he’d have to cut my chin open to access the tumour. “We have to get a drill in there,” he said.
When I look back on this MDM, I don’t think I was such a shrinking violet as I’d been during the diagnostic procedure but my son and I were put through the MDM and its aftermath like lambs to the slaughter with no input, no time to ask questions. Everyone else had the expertise and we had to sit there and take it. That seems fair in the old paternalistic model of medicine. My life was saved.
But in the participatory model of medical care, things would be different. My lymph node status was never explained to me and the consequences were severe. My facial nerve was cut to get to nodes through scar tissue - nodes that didn’t have cancer in them anyway. Someone made a decision to take this risk and I was never told of it or even informed later about the lifelong consequences of having a paralysed lip.
Here is a link to a fascinating Mayo Clinic paper about patients being held hostage by the expertise of the medical staff so that they become helpless and disempowered. Maybe it’s a bit extreme and I believe in a measured approach. But there are some good points here.
To conclude, patient-centred care is all the rage now but as one of our members said, it doesn’t just mean putting a patient on a stage in the center of the room.
Conclusion 2: I know my local hospital is working all out to make the MDM a better experience for the patient.