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Posted by on Dec 4, 2017 in Bioethics, Rare disease | 0 comments

EoL & the holidays? (01.12.2017)

EoL & the holidays? (01.12.2017)

This post could make for some challenging & difficult holiday conversations – and that’s the point!

A friend of mine, a good few years ago, found herself diagnosed with an aggressive cancer. Clare* had been widowed at a very young age, and had then lost her only child to an accident a decade later. We’d met through her husband, who’d been one of my childhood friends, and then became friends ourselves.

Clare had managed to keep going after those two losses, and to build a life surrounded by friends; the family she’d built for herself. And she’d devoted her life to helping others; first as a primary school teacher, and then as a volunteer after she’d opted for early retirement. Clare had settled in Ottawa, about a 2-hour drive from me, so we didn’t see each other as often as we’d have liked.

But in the days before email & cheap long-distance calls, we wrote to each other. Long, chatty letters, on beautiful stationary – something we both adored. It was a solid friendship, built over more than 20 years and between several different cities.

When I was considering whether to go back to school in my 30s – on a part-time basis – to finish my degree, Clare was the first person I talked to about it – in a letter. She drove to see me the next weekend, to convince me to go ahead with that plan. I’ve never regretted the decision, or the one to continue on and get my masters’ degree. I finished it 12 years after taking my first night class, as an adult working full-time!

When Clare had an opportunity to spend a year teaching in Paris, I returned the favour. I helped her rent her house, and told her I’d deal with the rental agency if any issues came up while she was overseas. That had been the only worry holding her back. Clare lived near a hospital in Paris, so had volunteered to work with children there; to read to them. And she became very interested in my passion, in biomedical ethics (or bioethics).

a moss-covered stone wall, at an old cemetary

Photo: Sandra Woods

So the day of her cancer diagnosis, Clare called me. She wanted information, not about cancer, but about end-of-life planning; about how to set up a living will. She’d realized that she had very clear feelings about what she did & didn’t want, in terms of medical care, if she became ill and incapacitated. I had access to some planning tools & questionnaires because of my work, so we set up a call; her sister-in-law was visiting, and Clare didn’t want to have to deal with anyone else face-to-face at that point.

It was a really difficult call, as we worked through tough questions about what types of medical care she’d want in specific situations. At the end. But as the call went on, Clare sounded progressively better. Happier. I asked her about it, and she said that she felt so much better prepared than she had before our call. That she felt much more “in control” of her life. Of her disease, even.

In the United Kingdom, they refer to end of life planning as ‘advance care planning’ or ACP. A recent medical journal article acknowledged that:

“Providing patients with information about their disease can help meeting their needs. Additionally, support of HCPs through identification of trigger points, training and system-related changes can facilitate engagement in ACP.”(2)

I’d taken notes during our conversation, and typed them into a questionnaire that Clare could bring to her medical team; I emailed it to her the next day, as an encrypted file. It became the basis for many conversations with her medical team, and helped ensure that Clare’s life eventually ended as best it could – for her. That her life ended, as much as possible, the same way she’d lived it; on her own terms.

During one of our later calls, over the following months, Clare asked the same question I’d been asking myself for years: “Why don’t we all make living wills, the same way we do regular wills?” After all, they aren’t useful only for end of life (EoL) due to terminal illness; they can also be a guide for loved ones in cases of accidents or other unexpected medical issues.

As we were kicking around ideas, we came up with one that seemed completely farfetched. Why not bring up EoL with loved ones during… the holidays! We both laughed off the idea, convinced that anyone who tried to do that would be quickly disowned or shut down by their family members and other loved ones.

So when I read this news item yesterday, I thought of Clare and our crazy idea all those years ago:

“But the most productive and revealing conversations about end-of-life wishes often take place outside of hospitals and clinics and around dinner tables, Levy said. “I do think we place too much emphasis on making healthcare environments the place for these conversations,” she said. “Communities are a lovely place to talk about what matters most in the event of illness. At the Thanksgiving dinner, the holiday festivities when everyone is together, these are times to discuss what matters to you.” (1)

So this holiday season, I wonder how many of us will be willing to start that conversation with our loved ones?


(1) Jabbarian, Lea J. et al. Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices. Thorax. 23 Nov 2017. Web:

(2) Cohen, Ronnie. Doctors rarely discuss end-of-life care for chronic lung conditions. Reuters. 01 Dec 2017. Web:


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