00:03:53.500So as our generation, my generation has aged, it's become a little more necessary for some, but what we come down to is rather than focusing on what they call dying with dignity, let's focus on living with dignity despite restrictions.
00:04:13.940And until we can assure people the likelihood of living with dignity despite restrictions,
00:04:20.260providing the care to the caregivers and the person, then we're asking people to play Russian
00:04:26.420roulette with a loaded revolver. And that is neither ethical nor sensible.
00:04:32.500So where do we lose our way on this path between what is good and reasonable and humane and kind
00:04:40.660and what is defined maybe as not good use of this medical assistance we lost our way i think in
00:04:53.140several spots one of them was ethically the insistence on autonomy that everybody can make
00:05:00.740their own decision everybody knows what's right for them uh i cannot tell you how many times
00:05:06.740somebody has told me i would rather die than not be able to drive a car i would rather die than be
00:05:13.220able have to have a have a colostomy i either had a german fellow in his 70s back when i was young
00:05:20.340who had a colorectal cancer and needed a colostomy and he said he didn't want to live like that he
00:05:26.260wasn't going to use a bag to go to the bathroom and his son and his wife and everybody ganged up
00:05:31.940on him and he found that if he could put on a cummerbund over his tuxedo and still go to the
00:05:38.660annual german dances life was still worth living i remember another time when i was working in a
00:05:47.540rehab hospital and there was a beautiful rehab uh technician physical therapist a sort of nordic
00:05:56.820looking a woman blonde large brother well-built uh and this fellow freddie was wielded we'll
00:06:04.980call him freddie and he had lost his leg just below his knee in a car accident and freddie
00:06:10.260was about 23. and so we'll call her heidi said well freddie you ready to get to work
00:06:18.020oh he said screw you i can't do nothing without my goddamn leg what do you think i'm gonna do
00:06:23.380that's how he looked and said okay take him back the next day i was down there again and they
00:06:29.860brought freddie again heidi said freddie ready to get to work sorry i can't do nothing nothing
00:06:36.580you can do to grow my new leg she said no she said what can you take him back well i got very
00:06:44.740interested in this being something of a voyeur so the next day it was friday
00:06:50.100comes down same thing happens she leans forward puts her hands on the wheel on the arms of her
00:06:58.540wheels his wheels here she said freddie you're not going to screw anybody if you can't get out
00:07:03.500of the goddamn chair turn back send him to his room i was there an hour early monday to see how
00:07:12.440this turned out monday freddie comes down and he says to hi he says so do we sort of have an
00:07:19.440agreement the will to live heidi leaned forward she put her hands on his wheelchair bent right
00:07:30.300into his face she said cupcake the only agreement to get is the ability to try take him back up the
00:07:39.340room next day he comes down she says well freddie you ready to get to work he said yes ma'am
00:07:50.320I learned more from that moment in that woman than in all the ethics courses I went to.
00:07:57.040We all mourn what we have lost. The life we lived is over. He was not going to become
00:08:04.240a professional footballer. But when we mourn what we have lost, we need to also look to what we can
00:08:11.440live with and what we can do with what we have. And often it is as good as or better than what
00:08:17.680was with care uh i did some work with a parent quad for lead paraplegics some years ago and
00:08:25.280there were studies which showed that in the first six months people with spinal injuries
00:08:31.280have over 90 percent suicidal ideation that is they don't want to live especially if they're
00:08:38.800quadriplegics and that's pretty serious i mean paraplegic is bad enough
00:08:45.360quads is really 90 over 90 percent two years later
00:08:51.440two-thirds of them found that life was equally worth living if different and sometimes even a
00:08:56.480little better they had to jettison all the things of the life that had one with an airplane pilot
00:09:04.240who i talked to well he wasn't going to fly a plane basically the quad he had jumped into a
00:09:09.520swimming cool junk drunk when there was no water in the swimming pool but his wife stood by him
00:09:15.120and his kids he found another way to work somewhat from his wheelchair and what he found was that
00:09:22.960without all the detritus of his life that the life with his family the life even with these
00:09:32.720limits was still worthwhile and even better yeah it's incredible it's incredible in a lifetime the
00:09:40.560people that you'll meet and you know i i have a i remember a friend saying to me there is no limit
00:09:46.640to the amount of pain a person might experience in their life and that is the truth but then you think