The conversation project – and some end-of-life thoughts #medx

By | Wed September 10, 2014

One of the bits of recommended “reading” in the Patient Engagement Design MOOC I’m taking is about The Conversation Project. The video talks about the importance of having conversations about what you want your end-of-life to look like. So that when your care givers are facing decisions, they know what you really want. I’m not sure why, but I was reminded of Randy Pausch Last Lecture: Achieving Your Childhood Dreams (if you haven’t seen it, I highly recommend it).

I’ve had a few of these end-of-life discussions with Scott – when the thoughts come up, I usually share them with him first, before I blog about them. I choose to blog about them. In part, this is so that the rest of my family also know what I want, but also, so that if the time comes, there is a written record of what I want. I know I should do a bunch of legal paperwork – we’ll need to do some of that paperwork before I go for surgery in December – but for all those little details, I have chosen to document them here. More specifically, I talk about how I want my ashes spread in the volcano on the Big Island of Hawaii.

I haven’t yet talked about what treatment I want during surgery. There are several things that might come about during my double-mastectomy, especially if I opt for reconstruction. Several of the treatment decisions are automatic and documented clearly in the consent protocol. I will consent to a double-mastectomy and sentinel-node biopsy. If the sentinel nodes have cancer, then they will continue with an axillary lymph node dissection. Because I’ve had neo-adjuvant chemo, they will be more aggressive with auxiliary lymph node dissection if they find cancer – as it means the chemo didn’t kill it. The cancer part of the surgery is actually the easy part, as the protocol is pretty clear. The questions will come if there are complications surrounding reconstruction (assuming I go that route).

I’m not actually ready to provide detailed directions on what I want in that area – as it will depend a lot on how the discussion goes with the plastic surgeon. I need to know what my real options are, and what options make the most sense. Until I have more information, I won’t be able to say what I want.

Now, if there are complications during the surgery, I would take the same approach as “Joe Neyer” in the video. However, his approach doesn’t really apply unless, at some point, I am diagnosed with metastatic disease. At that point, I would want a directive that involved ensuring quality of life. People can live for many years (8-10) with metastatic disease, but for me that is only worth it if the treatments to keep the disease in remission both work and don’t totally suck. But that isn’t a bridge I need to cross yet. After surgery, I’m still hoping to hear that I’ll be declared NED (No-Evidence-of-Disease).

If I have complications during the surgery that mean I’ll need to struggle to survive, then I would still want them. I’m not ready to die yet. Actually, I still think of myself as rather healthy – so despite the cancer, I’m healthy. As my energy returns and I bounce back from chemo, I hope to start demonstrating how healthy I am!

 

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