The unexpected gifts of medical aid in dying | Taffy Field | TEDxDirigo

0:00 Transcriber: Gemma Buil Ferri Reviewer: Huy Pham In 2015,

0:09 my husband, Elliot, was diagnosed with Parkinson's disease.

0:15 He had a tremor in his left leg, so slight that most of us couldn't notice it.

0:21 But the next day he turned to me and he said,

0:25 I want to decide the end of my life.

0:30 And suddenly I was afraid.

0:32 I was afraid that Elliot,

0:33 who had loved being alive with every fiber of his being,

0:39 would take matters into his own hands

0:41 to protect us from being accomplices in his death,

0:46 and to ensure that no one tried to talk him out of it.

0:50 And I was afraid that he would act sooner rather than later,

0:53 so as not to wait beyond his capacity to act.

0:59 Elliot said to me, “I’m afraid I will die choking.” I said,

1:07 “we’ll support whatever you decide.” “Please,

1:10 will you promise to include us in your thinking?” “We’ll find

1:16 a way.” Our adult children agreed and we were all crying.

1:23 What happened as a result, though,

1:26 is still so full of a kind of grace none of us could have

1:31 imagined that I want to share with you a little bit of what we learned.

1:35 Not just about dying, but about really living.

1:42 In 2015, the only legal way to end one's life

1:45 in Maine was voluntarily stopping eating and drinking, which can be hard.

1:52 By 2022, though, when Elliot was so physically

1:57 compromised that choking was indeed life threatening for him.

2:02 Mayne's Death with Dignity Act had been in place for two and a half years.

2:08 Mayne's law allows a patient to peacefully

2:11 end their life with a self-administered

2:14 prescription if two doctors determined that the patient’s diagnosis is terminal,

2:20 that the patient has the cognitive capacity to know

2:24 what they're asking for and to make a rational decision,

2:28 and isn’t being pressured by anyone.

2:32 The patient makes two verbal requests and a written one that must be witnessed,

2:39 and there are waiting periods that now can

2:41 be shortened if the patient is in significant pain.

2:45 Lots of people qualify for medical aid in dying and never use it.

2:50 They just want to know that they can.

2:53 So consider what's on offer here.

2:57 There's agency.

2:58 A serious diagnosis robs us of so many choices and suddenly questions which may

3:08 have been wafting around in a kind of abstract way take on a new urgency.

3:14 Will I die choking?

3:17 Will I die in a hospital?

3:19 Will anyone I love be with me?

3:23 There's fear of the unknown behind each of those questions.

3:27 But Maine's law, with its opportunities for us to guide our dying,

3:33 is a powerful antidote against that fear.

3:37 In Elliot's case, we could see the way lifting his fear about how

3:42 he would die was easing him into acceptance of the reality of death itself.

3:50 We could see him turning his full attention to living, to people he loved,

3:58 to songs he wanted to sing and yes, to bad dad jokes.

4:04 (Applause and laughter) And with genuine

4:10 and generous enthusiasm to tales of adventures

4:14 that others were going on and he would have loved to have joined.

4:19 This seemed particularly astonishing to me,

4:22 because Elliott was losing so much of the mobility

4:26 that had given his life special joy.

4:30 He was a natural athlete, beautiful at everything he did on skis or skates,

4:36 soccer cleats, tennis shoes, on a climbing rope.

4:40 He loved moving his body through space.

4:44 But his acceptance was making room for us to draw in what mattered in life.

4:57 To say “I love you.” To say “I’m sorry.” To say

5:06 “thank you.” To say “you matter.” Our family had those conversations.

5:15 Elliot and I spent long afternoons drifting back through our lives together,

5:21 laughing over ridiculously mishap adventures,

5:25 and sharing gratitude for the magic of finding

5:30 and refinding each other through more than 50 years.

5:37 We took Elliot to lean into the wind at the summit of Mount Washington.

5:45 And we took him back to the Grand Canyon

5:48 to breathe in the beauty of its gorgeous expanse.

5:52 Those are two of the places in the natural world that over and over

5:57 in his life had spurred his sense of wonder and his deep spirituality.

6:07 I was slow getting to the acceptance that was freeing

6:11 Elliot to live so fully in the face of death.

6:15 I'm sure that the constant flow of tasks and decisions

6:20 around his care was anchoring me in practical mode.

6:25 And I'm sure that powerful protective forces inside of me

6:29 were pushing back hard against the tsunami of grief.

6:35 It's not as though we can just decide to accept anguish.

6:41 Our species has evolved to push back against pain.

6:46 So it often takes a little something to catch

6:50 us off guard and begin to crack us open.

6:54 In my case, it took the crisp sterility of a little white paper bag,

7:03 holding the medication that Elliot would take to end his life.

7:10 The pharmacy had called me to go over the protocols of pickup and storage,

7:16 and through that conversation, I remained a responsible, coherent adult.

7:22 Then I got to the high security

7:24 pickup window and visceral reality knocked me flat.

7:31 My practicality evaporated.

7:34 All my emotions were undefended, and by the time I was carrying the little

7:40 white paper bag out to the parking lot,

7:43 I was sobbing, bent over double beside the car.

7:50 I crouched there, the full force of Elliot’s dying,

7:56 pressing me against the earth.

7:59 We would lose him as a husband, father, grandfather, brother, friend.

8:08 We would lose the future to build and grow into together.

8:14 And nothing I believed about the way he would live

8:17 on in all of us provided any comfort in that moment.

8:23 And then into my already broken heart.

8:28 Landed the question “have I done enough?” With its

8:35 insistence on my all of our messy imperfectness.

8:42 It was a long time before I could see well enough to drive home.

8:50 But as the days unfolded toward and then into that spring,

8:58 the conversations I was having with Elliot, the power of his example,

9:03 the love so many people were sharing with us,

9:07 and the knowledge that Elliot would be protected

9:11 in his dying and surrounded by people he loved.

9:16 All were holding the emotional space open for me to begin catching up.

9:25 Elliot had decided that he wanted to live to celebrate his 75th birthday,

9:30 so he planned his dying,

9:32 his bowing out as he was starting to call it for five days afterward,

9:40 on the beautiful May afternoon of his birthday.

9:43 We invited our extended family and closest longtime

9:46 friends to our farm for a little outdoor party.

9:49 We spread out colorful tablecloths.

9:52 Our grandchildren picked wildflowers to set on them.

9:56 I helped Elliot into a tweed jacket of his father's and a favorite bow tie.

10:05 And as I did.

10:07 I could feel it was as though the sun

10:12 was shining into an open space inside of me,

10:16 where my push back against reality had been.

10:21 And there was space.

10:24 There still is.

10:26 To feel fully and to live fully.

10:35 Elliot had wanted lots of singing at the party,

10:37 so a couple of friends brought guitars and we sang folk songs and songs

10:43 from musicals and old hippie protest songs

10:48 and take me out to the ball game songs.

10:52 We had asked our guests to write down what they would have said in a toast,

10:56 and so that we could read those love letters to him over the next five days,

11:02 and a friend took beautiful photographs that we

11:06 could stream on the wall across from Elliot's bed.

11:11 Elliot was having a lot of trouble talking by that May,

11:16 but when I tucked him into bed that night,

11:20 he reached up and he put a hand on either side of my face and he whispered,

11:29 “that was amazing.” The grace of Maine's death with dignity law,

11:41 with its gifts of relief from suffering and its

11:51 opportunities to nourish the immediate wonder of living,

11:57 still guides our family.

11:59 I hope it will be protected here and expanded

12:04 elsewhere where it's so badly needed and wanted.

12:10 And I also hope that all of us,

12:13 all of us can stay awake to those moments that want to crack us open and can

12:22 allow ourselves to be at least a little

12:25 gobsmacked every day by the reality of death.

12:29 Because if we can let go of our fear of dying,

12:33 what we gain is a spacious freedom to really live.

12:39 Thank you.

12:40 (Applause and cheering)