GralINt/TED Talks-Judy MacDonald Johnston: Make a plan for a good end of life

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Transcript:






What would be a good end of life?And I'm talking about the very end.I'm talking about dying.

We all think a lot about how to live well.I'd like to talk about increasing our chances of dying well.I'm not a geriatrician.I design reading programs for preschoolers.What I know about this topiccomes from a qualitative study with a sample size of two.In the last few years, I helped two friendshave the end of life they wanted.Jim and Shirley Modini spent their 68 years of marriageliving off the grid on their 1,700-acre ranchin the mountains of Sonoma County.They kept just enough livestock to make ends meetso that the majority of their ranch would remain a refugefor the bears and lions and so many other thingsthat lived there.This was their dream.

I met Jim and Shirley in their 80s.They were both only children who chose not to have kids.As we became friends, I became their trusteeand their medical advocate,but more importantly, I becamethe person who managed their end-of-life experiences.And we learned a few things about how to have a good end.

In their final years, Jim and Shirleyfaced cancers, fractures, infections, neurological illness.It's true.At the end, our bodily functionsand independence are declining to zero.What we found is that, with a plan and the right people,quality of life can remain high.The beginning of the end is triggeredby a mortality awareness event, and during this time,Jim and Shirley chose ACR nature preservesto take their ranch over when they were gone.This gave them the peace of mind to move forward.It might be a diagnosis. It might be your intuition.But one day, you're going to say, "This thing is going to get me."Jim and Shirley spent this timeletting friends know that their end was nearand that they were okay with that.

Dying from cancer and dying from neurological illnessare different.In both cases, last days are about quiet reassurance.Jim died first. He was conscious until the very end,but on his last day he couldn't talk.Through his eyes, we knew when he needed to hear again,"It is all set, Jim. We're going to take care of Shirleyright here at the ranch,and ACR's going to take care of your wildlife forever."

From this experience I'm going to share five practices.I've put worksheets online,so if you'd like, you can plan your own end.

It starts with a plan.Most people say, "I'd like to die at home."Eighty percent of Americans die in a hospitalor a nursing home.Saying we'd like to die at home is not a plan.A lot of people say, "If I get like that, just shoot me."This is not a plan either; this is illegal.(Laughter)A plan involves answeringstraightforward questions about the end you want.Where do you want to be when you're no longer independent?What do you want in terms of medical intervention?And who's going to make sure your plan is followed?

You will need advocates.Having more than one increases your chanceof getting the end you want.Don't assume the natural choice is your spouse or child.You want someone who has the time and proximityto do this job well, and you want someonewho can work with people under the pressureof an ever-changing situation.

Hospital readiness is critical.You are likely to be headed to the emergency room,and you want to get this right.Prepare a one-page summary of your medical history,medications and physician information.Put this in a really bright envelopewith copies of your insurance cards, your power of attorney,and your do-not-resuscitate order.Have advocates keep a set in their car.Tape a set to your refrigerator.When you show up in the E.R. with this packet,your admission is streamlined in a material way.

You're going to need caregivers.You'll need to assess your personality and financial situationto determine whether an elder care communityor staying at home is your best choice.In either case, do not settle.We went through a number of not-quite-right caregiversbefore we found the perfect teamled by Marsha,who won't let you win at bingo just because you're dyingbut will go out and take videos of your ranch for youwhen you can't get out there,and Caitlin, who won't let you skip your morning exercisesbut knows when you need to hearthat your wife is in good hands.

Finally, last words.What do you want to hear at the very end,and from whom would you like to hear it?In my experience, you'll want to hearthat whatever you're worried about is going to be fine.When you believe it's okay to let go, you will.

So, this is a topic that normally inspires fear and denial.What I've learnedis if we put some time into planning our end of life,we have the best chance of maintaining our quality of life.Here are Jim and Shirley just after decidingwho would take care of their ranch.Here's Jim just a few weeks before he died,celebrating a birthday he didn't expect to see.And here's Shirley just a few days before she diedbeing read an article in that day's paperabout the significance of the wildlife refugeat the Modini ranch.

Jim and Shirley had a good end of life,and by sharing their story with you,I hope to increase our chances of doing the same.

Thank you.

(Applause)