WILLIAMSVILLE — Even though I think about death almost every time I climb into a car - unquestionably the most dangerous activity in which I regularly engage - I've managed to put off writing my advance directive for health care for more than a decade.
Writing an advance directive for health care is for if or when I can't make my own medical decisions; it will help my health-care agent and medical providers know my idea of a good death. It's easy to procrastinate, especially when you're healthy and active and think death might still be 30 years off.
But as I get older, I realize that simply telling my husband and children I don't want extreme measures to keep me alive in the event of some catastrophe isn't enough.
Moreover, the older I get, the more likely the catastrophe I survive is less likely to be a car wreck and more likely to be extreme old age.
Catastrophe can neither be scheduled nor controlled, but procrastination can, so I'm starting the process of thinking seriously about how I want to die, even though I'm in the prime of a healthy middle age.
I know first-hand how important an advance directive can be. Like everything else in the technological age, dying isn't as simple as it used to be. And like many baby boomers, I'm learning this firsthand, from parents who have lived longer than any one else in prior generations.
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For a long time, my parents enjoyed a robust retirement. (My dad has now been retired for 26 years.) While my mom was alive and well, these were indeed golden years.
But Mom developed vascular dementia. With Dad's help, she carried on for as long as she could, but the disease ultimately rendered her mute and immobile; she spent the last year of her life in a nursing home dwindling away. She was 87 when she died.
Dad just turned 91. Despite hearing loss, deteriorating vision, and what he calls “a leaky mind,” he's engaged in writing a book, exercising, and enjoying family visits from the three generations that follow.
Even so, he's ready to go whenever he's called, and he has his advance directive in place. I know, because I'm his agent.
Like my dad, I'd like to die a natural death, which is easier said than done these days, with the medical insurance complex geared toward keeping us alive for as long as we're breathing, often preventing what's called “an exit event.”
An exit event offers someone who's sick the opportunity to die by declining further medical interference. For my mom, it occurred the day after her birthday, at which we'd all been present, although it's uncertain if she knew who we were - or even that we were all there. She went into respiratory distress, and instead of being whisked off to the hospital for IV antibiotics, she was kept comfortable in her familiar surroundings and with her familiar caregivers while she slowly slipped away.
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Now that I've stopped procrastinating about my own advance directive, I have to choose an agent and decide at what point I no longer want to live. Fortunately, I don't have to face this somewhat daunting task alone.
Thanks to a countywide initiative, I'm receiving guidance with my advance care planning from Brattleboro Area Hospice, a volunteer organization that provides programs and community support around issues connected to death, dying, and grieving. BAH runs a program whose goal is making sure everyone living in Windham County has an advance directive on file.
BAH gave me a pamphlet from the Vermont Ethics Network to read before my first meeting with a trained volunteer. “Taking Steps: Planning for Critical Health Care Decisions” is a little dry, but it's to the point and lays the groundwork for starting The Conversation. I'd barely turned the first page before I realized I already have a pretty good idea of what I want.
I started to articulate these ideas at my first meeting. Currently, I'm thinking that I want to live as long as I can comprehend and express my appreciation for stories.
But when I no longer recognize the line “It is a truth universally acknowledged, that a single man in possession of a good fortune must be in want of a wife,” it's time for me to shuffle off this mortal coil.
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Before I set this directive down in ink, I want to benefit from Hive Mind, where those I love and will leave contribute their ideas and thoughts, so we all agree on when to stop further medical care and let nature take its course.
Since the kids are scattered around the world, I'll be having this “conversation” by email, which suits me. And I've started organizing my thoughts by consulting websites like GoWish.com, where I played a card-sorting game that's helped me clarify what I think is most important about my end-of-life care.
I've also visited the Conversation Project's website, where I used the organization's Starter Kit, answering a series of questions to further help me clarify my thoughts. At the end of the questionnaire were suggestions about how to start the conversation with loved ones. That's next.
This conversation is critical for two reasons: First and most obviously, I want my loved ones to know what I want. My first choice of agent is easy: my husband.
But what if we're in the same accident? It's wise to choose an alternate - but there can be only one person who takes charge, acts as ombudswoman, and serves as the liaison between the medical system and the rest of the family.
But I'm blessed with three perfectly wonderful and competent adult children, none of whom lives nearby. More to the point, asking one's children to carry out one's advance care directive isn't the same as asking them to clean up their rooms, so I'm hoping one of the three will volunteer.
Ideally, all three will understand and feel comfortable with my litmus test for what makes life worth living.
That's what I need to articulate, so they all know.
After 10 years of procrastination, it turns out that the conversation about end-of-life care isn't really so much about how we want to die.
It's really about clarifying how it is we want to live.