TED2013
Judy MacDonald Johnston: Prepare for a good end of life
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Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.
Judy MacDonald Johnston - Entrepreneur
By day, Judy MacDonald Johnston develops children's reading programs. By night, she helps others maintain their quality of life as they near death. Full bio
By day, Judy MacDonald Johnston develops children's reading programs. By night, she helps others maintain their quality of life as they near death. Full bio
Double-click the English transcript below to play the video.
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What would be a good end of life?
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And I'm talking about the very end.
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I'm talking about dying.
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We all think a lot about how to live well.
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I'd like to talk about increasing our chances of dying well.
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I'm not a geriatrician.
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I design reading programs for preschoolers.
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What I know about this topic
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comes from a qualitative study with a sample size of two.
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In the last few years, I helped two friends
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have the end of life they wanted.
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Jim and Shirley Modini spent their 68 years of marriage
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living off the grid on their 1,700-acre ranch
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in the mountains of Sonoma County.
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They kept just enough livestock to make ends meet
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so that the majority of their ranch would remain a refuge
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for the bears and lions and so many other things
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that lived there.
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This was their dream.
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I met Jim and Shirley in their 80s.
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They were both only children who chose not to have kids.
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As we became friends, I became their trustee
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and their medical advocate,
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but more importantly, I became
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the person who managed their end-of-life experiences.
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And we learned a few things about how to have a good end.
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In their final years, Jim and Shirley
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faced cancers, fractures, infections, neurological illness.
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It's true.
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At the end, our bodily functions
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and independence are declining to zero.
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What we found is that, with a plan and the right people,
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quality of life can remain high.
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The beginning of the end is triggered
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by a mortality awareness event, and during this time,
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Jim and Shirley chose ACR nature preserves
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to take their ranch over when they were gone.
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This gave them the peace of mind to move forward.
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It might be a diagnosis. It might be your intuition.
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But one day, you're going to say, "This thing is going to get me."
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Jim and Shirley spent this time
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letting friends know that their end was near
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and that they were okay with that.
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Dying from cancer and dying from neurological illness
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are different.
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In both cases, last days are about quiet reassurance.
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Jim died first. He was conscious until the very end,
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but on his last day he couldn't talk.
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Through his eyes, we knew when he needed to hear again,
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"It is all set, Jim. We're going to take care of Shirley
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right here at the ranch,
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and ACR's going to take care of your wildlife forever."
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From this experience I'm going to share five practices.
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I've put worksheets online,
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so if you'd like, you can plan your own end.
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It starts with a plan.
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Most people say, "I'd like to die at home."
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Eighty percent of Americans die in a hospital
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or a nursing home.
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Saying we'd like to die at home is not a plan.
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A lot of people say, "If I get like that, just shoot me."
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This is not a plan either; this is illegal.
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(Laughter)
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A plan involves answering
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straightforward questions about the end you want.
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Where do you want to be when you're no longer independent?
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What do you want in terms of medical intervention?
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And who's going to make sure your plan is followed?
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You will need advocates.
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Having more than one increases your chance
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of getting the end you want.
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Don't assume the natural choice is your spouse or child.
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You want someone who has the time and proximity
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to do this job well, and you want someone
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who can work with people under the pressure
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of an ever-changing situation.
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Hospital readiness is critical.
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You are likely to be headed to the emergency room,
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and you want to get this right.
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Prepare a one-page summary of your medical history,
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medications and physician information.
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Put this in a really bright envelope
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with copies of your insurance cards, your power of attorney,
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and your do-not-resuscitate order.
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Have advocates keep a set in their car.
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Tape a set to your refrigerator.
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When you show up in the E.R. with this packet,
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your admission is streamlined in a material way.
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You're going to need caregivers.
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You'll need to assess your personality and financial situation
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to determine whether an elder care community
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or staying at home is your best choice.
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In either case, do not settle.
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We went through a number of not-quite-right caregivers
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before we found the perfect team
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led by Marsha,
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who won't let you win at bingo just because you're dying
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but will go out and take videos of your ranch for you
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when you can't get out there,
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and Caitlin, who won't let you skip your morning exercises
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but knows when you need to hear
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that your wife is in good hands.
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Finally, last words.
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What do you want to hear at the very end,
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and from whom would you like to hear it?
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In my experience, you'll want to hear
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that whatever you're worried about is going to be fine.
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When you believe it's okay to let go, you will.
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So, this is a topic that normally inspires fear and denial.
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What I've learned
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is if we put some time into planning our end of life,
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we have the best chance of maintaining our quality of life.
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Here are Jim and Shirley just after deciding
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who would take care of their ranch.
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Here's Jim just a few weeks before he died,
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celebrating a birthday he didn't expect to see.
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And here's Shirley just a few days before she died
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being read an article in that day's paper
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about the significance of the wildlife refuge
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at the Modini ranch.
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Jim and Shirley had a good end of life,
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and by sharing their story with you,
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I hope to increase our chances of doing the same.
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Thank you.
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(Applause)
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ABOUT THE SPEAKER
Judy MacDonald Johnston - EntrepreneurBy day, Judy MacDonald Johnston develops children's reading programs. By night, she helps others maintain their quality of life as they near death.
Why you should listen
Judy MacDonald Johnston is the Publisher and Cofounder of Blue Lake Children's Publishing, which develops educational reading tools for preschoolers through a program called the Tessy and Tab Reading Club. Johnston's credo, "love words early," and her focus on the earliest years of life, is an interesting foil for her other passion: Planning for end of life. Johnston's side project, Good [End of] Life, deals not with happy babies decoding symbols, but with a much more morbid topic: Death. Good [End of] Life is a set of online worksheets and practices that aim to help deal with difficult questions -- like who should speak for you if you cannot speak, and whether to fill out a do-not-resuscitate form -- before it's too late.
In the past 15 years alone Johnston has founded two other companies in addition to Blue Lake Children's Publishing: PrintPaks, a children's software company, and Kibu, a social networking site for teenage girls. Previously Johnston was a Worldwide Project Marketing Manager at Hewlett Packard.
Judy MacDonald Johnston | Speaker | TED.com