When my mum was diagnosed with stage IV colon cancer in the spring of 2015, my first instinct was not to sit her down and talk about her end of life wishes.
My first instinct was to scroll one year into the future on my iPhone calendar and type in “Mum Beats Cancer Party.” Despite her diagnosis, my sisters and I decided that intense, relentless hope was our only path forward.
As I write in my book So Sorry For Your Loss, that future calendar date came and went, and no party ever happened. My mum spent nearly four years enduring chemotherapy and fighting with all her might to live, so how could we possibly bring up a conversation about hospice care?
What kind of cold hearted daughters would we be to ask her if she wanted to die at home or in a hospital?
We thought that hope was the best gift we could give to her, and to ourselves. Mainly, we were just terrified to talk about or face the prospect of her dying.
I interviewed palliative care physicians, grief counsellors and a death doula for my book, to get their perspective on these end of life discussions that are so painful to have with someone you love.
One thing that struck me was that so many of them said that it’s easier to have these talks long before a loved one is sick, so that you can have a conversation that’s not weighted down by so much fear and anxiety.
In the United States, where I live, and in the UK, grief and death are not our favourite cocktail party topics, so we tend to avoid them altogether, until we’re forced to confront them.
For us, that confrontation happened when my mum went into the hospital in the fall of 2018. Her colon tore and the physicians told us there was nothing left to do. So there we were, my father and my sisters and myself, facing bureaucracy and paperwork and horrible decisions in the midst of our deepest grief. Not an ideal time to make smart choices.
If we’d had these conversations long before my mum was sick, maybe it would have made those early days of losing her just a tiny bit less wrenching. I’ll never know. What I do know is that while I was writing So Sorry For Your Loss, I told my healthy, young(ish) husband that we needed to sit down and talk about our end of life wishes.
I informed him that I don’t want our son, who is an only child, to feel guilty for putting me into hospice care instead of bringing me home, where my son would likely shoulder the majority of the caretaking.
Having that conversation when someone’s life is actually hanging in the balance would not be as easy as it is now. I don’t love the conversation, but I do believe that it helps to have it early, and to be as clear about your wishes as possible.
It won’t lessen the blow of loss, or make things easy, but it could make them just the smallest bit easier, and when you are in the throes of grief, that is a gift.
A study conducted by The Nuffield Trust and Hospice UK found that in 2020/2021, hospices supported about 300,000 people in the UK. Some people I’ve spoken to said they had positive experiences with hospice care, and the nurses we encountered were kind.
It’s just that caring for someone you love deeply as they die is a pretty traumatic experience. As I was researching my book, I interviewed Liz Hamel, vice president and director of survey research at the Kaiser Family Foundation in the US, and she said of at home hospice, “It’s harder than people think it’s going to be, and people are not prepared.”
I would say that for my family, that is an understatement. Hospice, for us, was like being tossed into the running of the bulls while being handed a paper that says ‘YOU ARE RESPONSIBLE FOR ANOTHER HUMAN LIFE – GOOD LUCK AND DON’T SCREW IT UP!’ Only much, much scarier.
Hospice, death and end of life issues are not easy things to talk about, and I wouldn’t recommend bringing them up at every cocktail party you attend.
But bringing them up with loved ones before anyone is sick is something I would highly recommend, though, because it makes the discussion that much less fraught. I’m sure my husband doesn’t love it when I say, “OK let’s talk about how you want to die!” but in the end, opening up those talks now will hopefully ease a little bit of our grief in the very distant, oh so far away future.
Dina Gachman is an award winning journalist, a Pulitzer Center Grantee, and the author of the new book So Sorry For Your Loss: How I Learned To Live With Grief, and Other Grave Concerns.