Having the Conversation – Death, Dying & Advance Directives

This week HCLDR joins a global discussion on the topic of death, dying and the end-of-life (EOL).

On November 28th, 2018 our friends in the #IrishMed (Ireland and UK) community discussed “The Value of Death”. You can see a transcript here. Then on December 1st, 2018 our friends in the #HealthXPh (Philippines) community discussed “The Autonomy in Dying: A Discussion of the Advance Directive”. You can read their blog here. On Tuesday December 4th, the HCLDR community will join the conversation.

When we were planning this global chat, we agreed that there would be two questions in common across all the communities:

  1. Do you (or members of your family) have an advanced directive? Why or why not?
  2. What tactics or approaches have you found effective in raising the issue of end-of-life with family/friends?

We are using these two questions to see if there are cultural and regional differences in the ways we approach death and the act of discussing dying. It will be very interesting to compare the answers to these questions across the three communities.

Talking about death, especially your own EOL is uncomfortable (to say the least). In some cultures it is taboo and to speak about it is to invite it upon yourself. This is true of Chinese culture which is why it was first discussed in hushed whispers with my parents and my grandmother. It was an especially difficult conversation with my grandmother who adhered to the “old ways”. But we did manage to get her to talk about her dying wishes over a dinner one night – when we were reminiscing about my father’s passing.

I think Issac Asimov, famed science fiction writer, said it best:

Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.

In North America, I don’t believe we are culturally biased against talking about death, but we have made it socially difficult to do so. We have an entire cosmetic-industrial complex that exists solely to keep us looking young/delay the signs of aging. According to a 2017 report, the global anti-aging market will grow to $216 billion by 2021. The American Society of Plastic Surgeons reported that there were 17.5 million surgical and minimally invasive cosmetic procedures performed in the United States in 2017.

With this much societal pressure to stay young, it’s not surprising that the subject of death and dying isn’t discussed often. Yet as healthcare costs climb and as the cost of care continues to be downloaded to patients, having this discussion is becoming more important than ever.

A 2016 NPR article, showed that $4,760, on average, was spent in the last month of a patient’s life who died at home versus $32,379 in the last month of a patient who died in a hospital. The article goes on to say that the healthcare system is designed to cure people and to extend life, regardless of the quality of that life. The article stops short of saying the treatment at a hospital shouldn’t be considered, but it does ask us to question what our end-of-life goals are.

I believe the financial cost of dying will help drive more people in the US to talk about Advance Directives(AD). Having an AD in place means that you can make the decision of how much and the type of care you would like to receive at the end of your life. Without making your wishes known, families are more likely to choose the life-extending option – because who really wants to be remembered as the one who pulled the plug on Uncle Bill?

In my opinion, that’s one of the best ways to get friends to talk about death and their AD. I ask the simple question of whether they would want to burden their loved ones with the cost of their life-extension (which can easily get into the hundreds of thousands) or with having to make the decision to end treatment. Imagine the anguish of having to make that choice. The considerate thing to do is make the decision for yourself so that the weight of that decision is not bourn by your spouse, sons, daughters, parents or friends.

If you need a little help in starting that conversation, there are some new tools that can help you. The company, Common Practice, makes a game called Hello that provides a “an easy, non-threatening way to start a conversation with your family and friends about what matters most to you”. The game was originally called Gift of Grace, which I had a chance to try first-hand at a conference several years ago.

Some of the cards I pulled out asked existential questions like “What do you think happens to you after you leave this life?” and “Who would you invite to your last dinner?”. Other questions were much more practical “If you could plan 3 things about your own funeral, what would they be?” and “If you needed help to go to the bathroom, who would you ask?”

Hello isn’t the only game. There are others like Fink, Heart2Hearts and The Conversation Game.

It may be counterintuitive, but the holidays can be one of the best times to talk about death and dying. It doesn’t have to be confrontational and it doesn’t have to be about the specifics about someone’s death plan. You can simply start the conversation by saying: “Remember Uncle Bill? He really loved fishing. I think he felt most alive when he was out on the lake in his leaky metal boat before the sun had come up. I think he would have loved being out on that boat one more time.” Discussing the activities that make you feel the most alive is the start of an AD conversation. It doesn’t have to be as blunt as “How would like to be buried Aunt Claire?”

Please join me on Tuesday December 4th at 8:30pm ET (for your local time click here) as contribute to this global conversation about death, dying and Advanced Directives:

  • T1 Do you (or members of your family) have an advanced directive? Why or why not?
  • T2 What tactics or approaches have you found effective in raising the issue of end-of-life #EOL with family/friends?
  • T3 Do you believe that we are spending to much time, effort and resources prolonging life without considering quality of life? How could we change this?
  • T4 Let’s start here on #hcldr – fill in the blank. “If I knew I had a year to live I would want to (see/do/go)…”

PS: My friend @KathyKastner is my go-to for all things related to #EOL. She is funny, witty and approaches death with humor, grace and fun. Yes fun. She wore a t-shirt once with the title of her book “Death Kills” which I thought was the funniest thing ever.

Resources

Miaco, Stephanie. “Autonomy in Dying: A Discussion of the Advance Directive”, HealthXPh, 1 December 2018, http://healthxph.net/master-class/advanced-directive-discussion.html, accessed 2 December 2018

Farrell, Liam. “The Value of Death, A Global Response”, IrishMed, 26 November 2018, https://irishmed.wordpress.com/2018/11/26/the-value-of-death-a-global-response/, accessed 2 December 2018

“New Statistics Reveal the Shape of Plastic Surgery”, American Society of Plastic Surgeons, 1 March 2018, https://www.plasticsurgery.org/news/press-releases/new-statistics-reveal-the-shape-of-plastic-surgery, accessed 2 December 2018

Cheng, Andria. “The Surprising Trend In Beauty? Skincare Sales Growing The Fastest Among Men’s Grooming Products”, Forbes, 15 June 2018, https://www.forbes.com/sites/andriacheng/2018/06/15/the-gift-your-dad-really-wants-this-fathers-day-anti-aging-cream/#44e5a2ce33ba, accessed 2 December 2018

“Anti Aging Market Size is Projected to be Around US$ 216 Billion by 2021”, Marketwatch, 30 July 2018, https://www.marketwatch.com/press-release/anti-aging-market-size-is-projected-to-be-around-us-216-billion-by-2021-2018-07-30, accessed 2 December 2018

“The cost of dying: end-of-life-care”, CBS, 05 August 2010, https://www.cbsnews.com/news/the-cost-of-dying-end-of-life-care/, accessed 2 December 2018

Aldridge, Melissa D and Kelley, Amy S. “The Myth Regarding the High Cost of End-of-Life Care”, American Journal of Public Health, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4638261/, accessed 2 December 2018

Kodjak, Alison. “Dying In A Hospital Means More Procedures, Tests And Costs”, NPR¸15 June 2016, https://www.npr.org/sections/health-shots/2016/06/15/481992191/dying-in-a-hospital-means-more-procedures-tests-and-costs, accessed 2 December 2018

Raymond, Chris. “End of Life Conversation Starter Card Games Decks”, VeryWellHealth.com, 23 March 2018, https://www.verywellhealth.com/how-card-games-can-help-start-end-of-life-conversations-4047376, accessed 2 December 2018

Image Credit

Photo by Elijah O’Donnell on Unsplash

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