TED2013

Judy MacDonald Johnston: Prepare for a good end of life

Filmed:

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.

- 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

What would be a good end of life?
00:12
And I'm talking about the very end.
00:15
I'm talking about dying.
00:17
We all think a lot about how to live well.
00:21
I'd like to talk about increasing our chances of dying well.
00:25
I'm not a geriatrician.
00:29
I design reading programs for preschoolers.
00:31
What I know about this topic
00:34
comes from a qualitative study with a sample size of two.
00:36
In the last few years, I helped two friends
00:40
have the end of life they wanted.
00:43
Jim and Shirley Modini spent their 68 years of marriage
00:45
living off the grid on their 1,700-acre ranch
00:49
in the mountains of Sonoma County.
00:52
They kept just enough livestock to make ends meet
00:54
so that the majority of their ranch would remain a refuge
00:58
for the bears and lions and so many other things
01:01
that lived there.
01:03
This was their dream.
01:05
I met Jim and Shirley in their 80s.
01:07
They were both only children who chose not to have kids.
01:10
As we became friends, I became their trustee
01:14
and their medical advocate,
01:16
but more importantly, I became
01:18
the person who managed their end-of-life experiences.
01:20
And we learned a few things about how to have a good end.
01:24
In their final years, Jim and Shirley
01:27
faced cancers, fractures, infections, neurological illness.
01:29
It's true.
01:33
At the end, our bodily functions
01:34
and independence are declining to zero.
01:37
What we found is that, with a plan and the right people,
01:39
quality of life can remain high.
01:43
The beginning of the end is triggered
01:46
by a mortality awareness event, and during this time,
01:48
Jim and Shirley chose ACR nature preserves
01:51
to take their ranch over when they were gone.
01:55
This gave them the peace of mind to move forward.
01:57
It might be a diagnosis. It might be your intuition.
02:01
But one day, you're going to say, "This thing is going to get me."
02:04
Jim and Shirley spent this time
02:08
letting friends know that their end was near
02:09
and that they were okay with that.
02:11
Dying from cancer and dying from neurological illness
02:16
are different.
02:19
In both cases, last days are about quiet reassurance.
02:21
Jim died first. He was conscious until the very end,
02:25
but on his last day he couldn't talk.
02:29
Through his eyes, we knew when he needed to hear again,
02:31
"It is all set, Jim. We're going to take care of Shirley
02:33
right here at the ranch,
02:36
and ACR's going to take care of your wildlife forever."
02:37
From this experience I'm going to share five practices.
02:41
I've put worksheets online,
02:43
so if you'd like, you can plan your own end.
02:45
It starts with a plan.
02:48
Most people say, "I'd like to die at home."
02:51
Eighty percent of Americans die in a hospital
02:53
or a nursing home.
02:55
Saying we'd like to die at home is not a plan.
02:57
A lot of people say, "If I get like that, just shoot me."
03:00
This is not a plan either; this is illegal.
03:04
(Laughter)
03:06
A plan involves answering
03:10
straightforward questions about the end you want.
03:13
Where do you want to be when you're no longer independent?
03:15
What do you want in terms of medical intervention?
03:18
And who's going to make sure your plan is followed?
03:21
You will need advocates.
03:23
Having more than one increases your chance
03:25
of getting the end you want.
03:26
Don't assume the natural choice is your spouse or child.
03:28
You want someone who has the time and proximity
03:31
to do this job well, and you want someone
03:33
who can work with people under the pressure
03:36
of an ever-changing situation.
03:38
Hospital readiness is critical.
03:40
You are likely to be headed to the emergency room,
03:42
and you want to get this right.
03:44
Prepare a one-page summary of your medical history,
03:46
medications and physician information.
03:49
Put this in a really bright envelope
03:51
with copies of your insurance cards, your power of attorney,
03:53
and your do-not-resuscitate order.
03:56
Have advocates keep a set in their car.
03:58
Tape a set to your refrigerator.
04:00
When you show up in the E.R. with this packet,
04:02
your admission is streamlined in a material way.
04:04
You're going to need caregivers.
04:08
You'll need to assess your personality and financial situation
04:10
to determine whether an elder care community
04:14
or staying at home is your best choice.
04:17
In either case, do not settle.
04:20
We went through a number of not-quite-right caregivers
04:22
before we found the perfect team
04:26
led by Marsha,
04:28
who won't let you win at bingo just because you're dying
04:30
but will go out and take videos of your ranch for you
04:37
when you can't get out there,
04:40
and Caitlin, who won't let you skip your morning exercises
04:42
but knows when you need to hear
04:45
that your wife is in good hands.
04:46
Finally, last words.
04:50
What do you want to hear at the very end,
04:53
and from whom would you like to hear it?
04:54
In my experience, you'll want to hear
04:57
that whatever you're worried about is going to be fine.
04:59
When you believe it's okay to let go, you will.
05:03
So, this is a topic that normally inspires fear and denial.
05:07
What I've learned
05:13
is if we put some time into planning our end of life,
05:15
we have the best chance of maintaining our quality of life.
05:18
Here are Jim and Shirley just after deciding
05:21
who would take care of their ranch.
05:24
Here's Jim just a few weeks before he died,
05:26
celebrating a birthday he didn't expect to see.
05:30
And here's Shirley just a few days before she died
05:33
being read an article in that day's paper
05:37
about the significance of the wildlife refuge
05:39
at the Modini ranch.
05:41
Jim and Shirley had a good end of life,
05:44
and by sharing their story with you,
05:46
I hope to increase our chances of doing the same.
05:49
Thank you.
05:52
(Applause)
05:53
Translated by Joseph Geni
Reviewed by Morton Bast

▲Back to top

About the Speaker:

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.

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.

More profile about the speaker
Judy MacDonald Johnston | Speaker | TED.com