By Sharon Emery
On summer vacation, I:
- Spent treasured time on Lake Huron with family and friends.
- Planned how I want to leave this exquisite, never-say-die world.
I know what you’re thinking: Not for me (the end of life part). But if you want to go out under your own terms, it’s time to start mulling it.
You can sit in your room and list your end-of-life wishes, as best you can define them, but the prospect of that lonely struggle can make you put it on the back-burner – maybe forever. Believe me, I know. I’ve talked a good game about doing this for years. Then things began happening in my life, and in the lives of close friends, that made us pinky swear to get the job done together – the sooner, the better.
So I had the good fortune of spending a day with three of my closest friends, talking about whether or not we want each other holding our hand when we’re on our death bed…and other crucial questions, including when to pull certain plugs.
Our organizing document was the Five Wishes advance directive, available from Aging with Dignity, at https://fivewishes.org/shop/order/product/five-wishes-online. The Tallahassee-based nonprofit works to ensure that every one of us has the opportunity to talk about what matters most to us and how to put those values into action at the end of our lives.
About End of Life with Five Wishes
Five Wishes is designed to help people face their greatest fear in a life-affirming way. Really. You start out simply talking about your inevitable end, which is probably the biggest hurdle. Ultimately, in filling out the form, you outline how you want to be treated if you get seriously ill, and end up with a legal document to guide your doctors, family and friends.
It was developed in 1998 with the help of the American Bar Association and end-of-life experts, and with support from The Robert Wood Johnson Foundation. In the ensuing 21 years, it has helped more than 35 million people think clearly about the unthinkable — not just medical care, but the whole end-of-life experience, including spiritual, emotional and personal wishes.
Five Wishes is about considering a time when you are unable to make decisions for yourself and determining:
- A person you trust to make decisions for you
- The types of medical treatment you want – or don’t want
- What is most important for your comfort and dignity
- Important spiritual or faith traditions you want to be remembered
- What you want your loved ones and health care providers to know about you
It sounds easy enough, but we found that answering those questions required a wide-ranging discussion. We had planned a one-time-only meeting – a timeline designed to force us to complete the document – but we have decided to meet at least once more, to process and more confidently address these big thoughts.
So, how do you get a group of your friends to rally around talking about your deaths?
Make it fun. We call our group The Mortality Club and we four members call ourselves Mortals. Yep, practicality (and an ability to laugh at the macabre) is our watchword. That’s important because we’re all women of a certain age – 60s, which seems more fun as a decade than an age cohort. But it does create the urgency needed to get this job done.
We are at various stages of life, however, so our conversation was wide-ranging. The younger two, 60 and 63, are single and still working. In addition to end-of-life issues, they wanted to talk about how to disengage from work that is currently essential to their role in the world, their purpose, their relevance. The other Mortal and I are 67, retired from jobs we loved, and long-married. We wanted to nail down our wishes so our spouses and children would be saved the torment of life-or-death decision-making, should we arrive at a medical crossroad.
Oh, and there was wine (supplied by Mortal 63 and Mortal 67). The centerpiece of our discussion table included packets of Kleenex, along with a Nerf gun to stop any one of us from going on too long. And we planned the day in a conference-style format, with breaks for lunch (courtesy of Mortal 60) and dinner (made by Mortal 67.1).
We developed a reading list, and each of us presented the issue most urgent to us. Your The Mortality Club may focus on different issues, but this is how we started:
Session 1: The overarching concern – Practical steps to addressing end-of-life issues.
Readings: Atul Gawande’s book, “Being Mortal,” and the NPR podcast with him, https://onbeing.org/programs/atul-gawande-what-matters-in-the-end/
Mortal 67: People often say: “I never want my kids/loved ones to have to deal with that,” referring to experiences caring for parents or our own end-of-life what-ifs. All may agree with that statement, but rarely does the discussion get to the meat of it. I want to maximize the chances that my loved ones be spared difficult decisions regarding my care without a clear understanding of my wishes.
Mortal 63: I recall that my patient directive gets pretty nitty-gritty about what I want and don’t want done. I’ve never filled out that section. I want to, so I don’t leave my poor nephew, who’s my medical power of attorney or whatever you call it, in a quandary.
Session 2: The lead-up – The end of life is one thing, but how do you deal with the approach to your ultimate demise? Do you want to live long or well?
Readings: Barbara Ehrenreich’s book about the “wellness epidemic,” “Natural Causes,” and her proposition that at some self-appointed time you can decide you’re old enough to die. Also, a Radiolab short, “The Bitter End,” about end-of-life choices doctors make for themselves. https://youtu.be/tlFXwiNiS64
Mortal 67.1: Ehrenreich says bluntly that aging is a process of increasing disability, requiring us to adapt to each new challenge as best we can – in acceptance, not denial. (Ouch.) But even more debilitating, she says, is that nothing in modern life prepares us for leaving it. We treat aging as an outrage or, worse, as a sin. And in our addiction to betterment, we’ve replaced “health” – an absence of sickness – with a flurry of over-testing, fad diets and pointless “alternative” treatments.
Session 3: Calling it quits – When to stop working and when not to.
Mortal 60: Our goals change as we age. How does that affect our work and other things we do? How do you find the right balance in contributing to society, either through daily work or an engaging retirement? Is leaving work a forced withdrawal from the buzz of the busy world or can you keep an iron or two in the fire? What does the middle ground look like and what alternatives can we design?
We didn’t get to Session 4 – exploring our spiritual selves, via a diverse mix of religion, poetry, music, art, theater, spirituality – before it was time to munch appetizers and sip wine before dinner. And despite our plan-of-work, we hadn’t filled out a single word in the Five Wishes document.
But, almost imperceptibly, we began talking about doing that with empowered determination and confidence.
Simply talking about end-of-life issues does that. It allows you to put language around your feelings – hopes and fears – in a way that makes them manageable. It allows you to conceive of a day when you have no control, and your loved ones are struggling to cope with your undoing. THAT’S power.
You want to clearly define that day, more than any other, even as the specifics of it remain unknowable. Getting to those specifics – how you want to be treated if you are seriously ill – is a journey that requires family and our closest friends. Creating your own Mortality Club can make it happen.
We Mortals feel as though we’re on the right track. We plan to complete our wishes before time runs out. Our stopwatches are ticking…