Thinking ahead and planning for the end

We should encourage our patients to do advanced care planning before they get a terminal illness – and also do it ourselves

During a recent webinar around the issue of medical assistance in dying, I was prompted to root out my own Think Ahead form which I had printed off from the Irish Hospice Foundation website back in 2016.

I had stage 4 cancer then, so it is fair to say that dying wasn’t too far from the top of my mind most days. (I know we should encourage all our patients to do advanced care planning well before they get a terminal illness, but let’s face it, the Grim Reaper is a great motivator).

It felt a little strange to be looking at my own handwriting from a time when I was so immersed in hospital appointments, chemo side-effects, and never-ending blood tests. As I scanned through the answers I had filled in back in 2016, I noted with no small amount of joy the things that had remained the same in the intervening seven years. My husband is still my next of kin, so I haven’t lost him along the way. My other emergency contacts, my parents, remain hale and hearty and perfectly capable of stepping into the breach should something dramatic suddenly befall me.

I haven’t gained any new allergies or diagnoses, and even the existing “metastatic colorectal carcinoma” is up for debate. The form asks: “Have you been in hospital for a serious illness in the last five years?” Well actually, no. Fancy that.

The past medical history part is missing a few tweaks, such as the targeted radiotherapy treatments I had in 2017 and 2018, and some treatments for chronic pain, but otherwise I have nothing significant to add to my inventory.

This is going great, I thought. I’m loving reading this and seeing how much progress I have made.

And then I stopped. My hand went to my heart. The next section contains the details of my GP. While I was filling in this form back in 2016, I was consumed by my own mortality and I was entirely dependent on my healthcare team to get me through. My GP was my wise unwavering steward who guided me around all of the emotional and practical rollercoasters that I faced. Little did I know when I filled in the form, that it would be she who would require end-of-life care within the next few years, rather than me. I know she was a huge advocate for advanced care planning and she and I had many frank conversations about ‘death admin’.

So I have had to update my form in a way I wasn’t expecting and write in the name of my new GP (who has also been wonderful, but has thankfully had much less to do with me!).

I continued on through the form. My health insurance provider has changed its name multiple times, to the point where I now have no idea what it’s called. I never quite got around to creating an enduring power of attorney – that was a step too far for me back in 2016 and it seems even further away from being a priority. My wishes about where I would like to die remain the same and my thoughts on life-sustaining treatments and CPR have not changed; basically, I want my healthcare team to decide if it makes sense to attempt resuscitation or not.

My children are getting closer to the age of 18, after which I won’t need to think about guardians for them. This seemed so far in the future when I was diagnosed, given that my youngest was just eight months old, and I paused to reflect on how lucky I am to have been present for all these “extra” years.

The last section of the form is my favourite part – funeral planning. This is where I became very enthusiastic back in 2016. Specific instructions about where my ashes should be scattered, detailed lists of songs and music, express wishes about the nature of the celebration. There is no way my loved ones are getting to host a party all about me, without me getting to micromanage it all from the other side.

The Hospice Foundation has updated and expanded its Think Ahead planning resources on their website, and GPs can currently order packs of 40 at a discounted rate. While individuals can download the pack for free from the website, it can be really helpful to have the hardcopy documents available in our surgeries to hand out to patients who might benefit from them. And, of course, we might pause a moment and fill in one for ourselves.

Trust me, it’s very therapeutic.