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 work0.98
00:06:18.020oh he said screw you i can't do nothing without my goddamn leg what do you think i'm gonna do0.98
00:06:23.380that's how he looked and said okay take him back the next day i was down there again and they0.99
00:06:30.020brought freddie again heidi said freddie ready to get to work sorry i can't do nothing nothing
00:06:36.660you can do to grow my own leg she said no she said what can you take him back well i got very
00:06:44.900interested in this being something of a voyeur so the next day it was friday
00:06:50.260comes down same thing happens she leans forward puts her hands on the wheel on the arms of her0.98
00:06:58.660wheels his wheels yard she said freddie you're not going to screw anybody if you can't get out0.98
00:07:03.620of the goddamn chair turn back send him to his room i was there an hour early monday to see how0.97
00:07:12.560this turned out monday freddie comes down and he says to hi he says so do we sort of have an0.99
00:07:19.560agreement the will to live heidi leaned forward she put her hands on his wheelchair bent right0.92
00:07:30.420into his face she said cupcake the only agreement to get is the ability to try take him back up the
00:07:39.460room next day he comes down she says well freddie you ready to get to work he said yes ma'am
00:07:50.440I learned more from that moment in that woman than in all the ethics courses I went to.
00:07:57.160We all mourn what we have lost. The life we lived is over. He was not going to become
00:08:04.360a professional footballer. But when we mourn what we have lost, we need to also look to what we can
00:08:11.560live with and what we can do with what we have. And often it is as good as or better than what
00:08:17.800was with care uh i did some work with a parent quad for lead paraplegics some years ago and
00:08:25.400there were studies which showed that in the first six months people with spinal injuries
00:08:31.400have over 90 percent suicidal ideation that is they don't want to live especially if they're
00:08:38.920quadriplegics and that's pretty serious i mean paraplegic is bad enough
00:08:45.480quads is really 90 over 90 percent two years later
00:08:51.560two-thirds of them found that life was equally worth living if different and sometimes even a
00:08:56.600little better they had to jettison all the things of the life that had one with an airplane pilot
00:09:04.360who i talked to well he wasn't going to fly a plane basically the quad he had jumped into a
00:09:09.640swimming cool junk drunk when there was no water in the swimming pool but his wife stood by him
00:09:15.240and his kids he found another way to work somewhat from his wheelchair and what he found was that
00:09:23.080without all the detritus of his life that the life with his family the life even with these
00:09:32.840limits was still worthwhile and even better yeah it's incredible it's incredible it's
00:09:39.560incredible in a lifetime the people that you'll meet and you know i i have a i remember a friend
00:09:45.080saying to me there is no limit to the amount of pain a person might experience in their life and
00:09:50.600that is the truth but then you think about the challenges you see people out there overcoming
00:09:58.280every day to be with family to try to find new hope but it as you point out is not instant in
00:10:04.680these tragic and terrible scenarios made makes it easy to say i can't live like this
00:10:13.160made makes it easy to say i'm going to go out like a a viking whereas before made when we didn't have
00:10:21.720that we had not only the opportunity but the necessity of trying where we have fallen down
00:10:27.800as a society in canada is we do not assure that everybody gets the palliative care
00:10:35.240that they need and palliative in terms of medical care and situational care everybody does not get
00:10:42.920the psychological need or the social support that we could give them in a life circumstance whether
00:10:49.800they're going blind they're going deaf whether they're they have a chronic disease there is so
00:10:55.640much more we can do that we don't do because it is not where we want to put our social monies
00:11:02.440so my argument since the 90s has been i will not say we should never have any made anywhere anytime
00:11:11.320every society has had made medical termination in certain cases at the end when they're today
00:11:20.360we can palliate that is control the pain of over 90 to 95 percent of all cases
00:11:29.400but do we assure that every canadian who needs it will get that no not yet and so
00:11:38.600we don't also provide the social support that many people would need if i had to lie in a bed
00:11:44.440for the rest of my life being turned twice a day and being fed through a pet tube i would think
00:11:49.720twice about living if however with those limits i had people who could bring the support and i then
00:12:00.200and the family which was there it would be a different case i was at dorothy lay hospice in
00:12:06.280toronto uh just before mate came out and doing a session with all the doctors and the pastoral
00:12:11.960counselors uh and the social workers and i went around the table and i said tell me what's the
00:12:18.840worst cases that you have at the moment how do you think about this and everybody had
00:12:26.120maybe well not the pastoral counselors but all of the physicians who were very much against made
00:12:32.840but there was everybody had a case or two where they said what we don't know why we really were
00:12:38.520doing this except for the fact that we believe in life uh these were people end the stage last
00:12:46.120a couple weeks of life they were when a guy remembered you wake him up he would gag and
00:12:51.960almost vomit until he put back to sleep again that's all he had for the last week
00:12:56.360was that a life worth living it was pretty touchy and we will see those and i've worked with end
00:13:02.120stage persons with uh multiple sclerosis or i've done a lot with people with end stage uh uh
00:13:09.080dementias and i've been brought into the room and the husband said to me this is my wife
00:13:17.720margaret why don't you say hello she was margaret was lying in bed her eyes were rolling she was
00:13:22.040clearly non-compass but i was glad to sit down beside the bed introduce myself to the wife
00:13:28.200and talk did i do this for her i did it for the husband for him she was still the woman he had
00:13:37.000married and to whom he was indebted i could do no less i thought it was actually a very beautiful
00:13:41.320moment indeed other people thought this is weird what we have done is focused so much on autonomy
00:13:48.760that is the idea that i can make a choice without realizing how little we know about the choices we
00:13:55.800have and how we know even less about the choices that as a society we should make sure that you do
00:14:02.600how do we get that to the masses because what we get a lot of now it's i hate to say it it is a
00:14:10.320it's a salacious topic because it is such it's the end of life i mean it's a very very heavy
00:14:18.600duty topic and you know uh other countries look at at canada certainly the u.s and and it's a point
00:14:25.680it's a matter of pointing at us saying oh you know don't get depressed in canada they'll give
00:14:31.040the option to kill yourself how do we get the message to the masses that there's a better way
00:14:38.640to be doing this there are better options what are your thoughts on that tom
00:14:49.760there are people who have made this argument strongly and consistently and eloquently
00:14:56.340In Vancouver, we have Dr. Margaret Cottle, who's a palliative care physician.
00:15:01.700And she's Christian, but a lot of people say, well, she's just Christian.
00:15:05.720The first way we do it is by saying this is not about religion.
00:15:10.220This is about what we as a people believe and what we will do, what we value, and who we will support.
00:15:18.600And one way to actually emphasize that is, unfortunately, make me prime minister.
00:15:25.520And I legislated through, but I think another chap has a job at the moment.
00:15:31.780So he does indeed. Yeah. And he hasn't. Nobody's asked me to run for office.
00:15:35.560So, well, you know, consider this a formal offer of my backing you as candidate.
00:15:41.200I thought I might basically lead up the NDP myself. Go for it.
00:15:45.480Yeah. Unfortunately, every con has got it now. One way we do it is the way we're doing it here.
00:15:51.700we say let us talk about this as reasonable people let us talk about what you're concerned
00:15:56.820with people say to me well i know what i want i say you know what you want today
00:16:04.580none of us know what we will want in a situation we have not experienced
00:16:10.580and at the very least and this is beginning to be discussed we need to assure people have the
00:16:16.660time to adjust to the changes and to get the aid that we can provide them people say to me
00:16:23.540i saw my i was in a session with some people neuro neuroethics neurophysiology and this young
00:16:31.060guy up from the states said he had seen his grandmother just before she died when he was
00:16:39.140nine they took him into the hospital room and her head was rolling he said it was horrible it was
00:16:45.780terrible is it and he will he has a genetic predilection towards the likelihood of this
00:16:52.580disease he said as soon as i get it i want to die why can't i die and i said in front of with all
00:16:59.380the several other doctors and people around i said you had an incredibly traumatic experience
00:17:05.620at the age of nine that nobody prepared you for and you're living with that as if that will be
00:17:13.460yours and your family's medicine has changed a lot and you have changed a lot i think before
00:17:21.220you make a decision you really need to get some counseling to deal with that issue that you never
00:17:27.380really done well everybody said to me you can't tell them to go to get psychiatric counseling
00:17:31.380you just can't say that i said of course i can i know something about trauma and the same thing
00:17:38.260with pain people say i saw somebody die with uh x y and said i terrible all the pain and i say
00:17:48.100that was 20 years ago that was your grandma that was 10 years ago palliative medicine has made
00:17:53.140enormous strides in the last 10 and 20 years we can maintain people in a level of almost
00:18:01.140i say moderate comfort almost to the end of almost every disease
00:18:05.620and what you're dealing with is outdated that's the way it was
00:18:11.260but you're thinking my case as if what you know is all that there is in medicine and all there
00:18:21.140is that we can do for you and you have to basically be humble enough to say maybe things
00:18:26.380have changed maybe things are different and to listen to the professional who is trying to guide
00:18:31.820you remember when if you have an accident going home knock on wood heaven forbid and you wake up
00:18:38.460in the hospital and they're assessing you this is a major trauma for you but for the er doc and
00:18:46.300nurses this is what they see every day so what for us is spectacularly unique and terrifying
00:18:54.940is for the professional sudden they've seen a hundred or two hundred times and so from that
00:19:02.540perspective that they say look i know that you feel like you'd like to die but let's put that
00:19:06.620off for the moment a friend of mine who was a uh uh family doctor does a lot of geriatrics work
00:19:16.700was that called to a nursing home where this elderly fellow said he wanted to do made and
00:19:21.420he had filled out the papers and this was an institution which did not believe in made and
00:19:25.580they were very upset so they brought in we'll call her dr peggy and so dr peggy said to the guy
00:19:35.100uh ralphie uh i see you signed up for made do you know what that is he said yeah it means i
00:19:43.180and Peggy said well okay that's that's good she said but Ralphie do you do you want to die today
00:19:52.180he said no not not today he says what do you want to do he said I want to go to Costa Rica
00:19:58.780and see my girlfriend this guy was in his mid-80s and the doctor said well we can work on that you
00:20:08.080know, we would have to find somebody to go with you. You
00:20:11.380know, you are terminally ill. Find them to go with you. I'm
00:20:14.980sure the medications make sure that somebody your girlfriend in
00:20:18.040Costa Rica will welcome you. But we can work on that. We said,
00:20:22.480great, thank you. She said, Well, what do you want me to do
00:20:25.420with this maid? He said, I don't want to die now. I'm gonna see
00:20:28.540my girlfriend. So often we don't off ask that is as
00:20:34.700practitioners as ethicists we don't think to ask what people understand and what it is they really
00:20:42.380want and many times we say i don't i want to die it means i don't want to live like this
00:20:50.380right that was what i was going to say is what people are identifying to you is
00:20:55.340either i have trauma that says i can't handle the end and nor do i want to experience that
00:21:00.860that in a bad, painful way, or that people are misinformed about how they actually feel about
00:21:09.920terminating their life. A couple of things came up when I was doing the research,
00:21:14.920and maybe you can hit me on these. I would appreciate it.
00:21:20.700I'm sure that it's in the mail. I've been doing this a few years. When I don't have the book,
00:21:27.800I know what to say to the author, but I would be very interested in talking more.
00:21:31.660And by the way, we'll make sure that you you can find the book.
00:21:34.820We'll put the link in the description for this show.
00:21:38.420One of the things I've done over over 70 papers in the academic journals and probably 20 things in popular like magazines, newspapers on this subject.
00:21:49.440So, yeah, you know, they can see me on my Web page.
00:21:53.000I'll tell you what, you can Google, Tom, and you'll get the same experience that we did.
00:21:58.760Yeah, a vast resume of discussion on a topic that is often brushed aside by even professionals.
00:22:05.900One of the things that we hear as, I don't know that it's true, I don't know how many
00:22:12.160people feel this way, but there's this stigma that, you know, we can relieve a certain pressure
00:22:19.160on the healthcare system by allowing people to do this and make this choice, which scares me
00:22:25.380because I want to be a good Canadian. I want my kids and young people to have the first medical
00:22:32.380care possible from my virtuous self, that I might be convinced that if I was being a burden on the
00:22:40.520system, that I'd feel certain pressure from within to pursue this.
00:22:49.160I'm not sure if that's a general bit of feedback that you get, but pressure on the healthcare
00:22:57.820system kind of relieves the shortages in other areas where we're struggling right now.
00:23:07.820In the late 1980s, Danny Callahan, who was the doyen of bioethicists of those days and
00:23:13.980head of the Hastings Center, wrote a book saying that we should give nothing but
00:23:18.780palliative care, just comfort care to anybody who was over 55 or 60, that society needed to spend
00:23:28.380its money on younger, more able people. Well, as the years went by, Danny kept raising the age
00:23:34.400in which he thought we should not care as he kept getting older. And finally, when he was in his
00:23:41.100early 80s, he said, well, I still think I'm right. I just
00:23:43.040don't know what the age is. Yeah, the question of are we
00:23:48.600saving money? Well, the fight, you know, if somebody goes for
00:23:55.520made, you know, two, three physicians have to be involved,
00:23:59.040there's two people who are doing the assessment, there's a
00:24:00.820physician, there's nurses. I mean, it's not inexpensive in
00:24:05.100society. Would we is it probably less expensive than having
00:24:10.480somebody be in hospital for four months yeah but are we is that what we have become a people who
00:24:17.940want to say we will end your life because it's cost efficient we're better than that and you
00:24:26.080know the cost of two b b1 bombers or whatever the new planes were buying or the cost of one
00:24:32.640submarine would be enough to go very far to fix our health care system uh when the canada health
00:24:41.440acts was promulgated in 84 the idea was a partnership federal and provincial and there
00:24:48.400was under paul martin a one-time top-up of those monies but at present the federal contribution
00:24:55.600i think is a 29 or 28 percent of what used to be was supposed to be a partnership right
00:25:02.000so the question is as citizens if we're concerned with the cost of care if we're concerned with
00:25:08.480medicine let's tell our mps and our prospective mps and our members of uh of parliament of the
00:25:15.840legislature where we want our money is in health care we want the nurses to have the conditions
00:25:24.080they need to do good jobs we want to provide through our medical schools the range of the
00:25:30.320specialties that we have and need but are not being filled at the moment uh so if the issue
00:25:37.280is money i say buy one less submarine and one less bomb okay well listen i now i have my just
00:25:45.040i have my justification to linger and i intend to linger tell my kids but this will be my
00:25:49.920justification uh and i think that it's a fair one because i guess my point in that is and and thank
00:25:56.720you for illustrating it it's it's a terrible thought that that might even be one of the
00:26:03.760inspirations to have a made program in the first place it was among the ethicists who were putting
00:26:12.480forward the propositions not an argument they made um danny callahan did it in terms of health
00:26:19.840care generally but in terms of the argument in canada the ethicists who were for the law
00:26:29.440being changed were not making that argument that was not in the senate select committee report
00:26:35.520to our credit and those who make it among us it is very much a type of process that was put forward
00:26:42.720by the nazi regimes for instance where over 50 000 persons with disability were terminated because
00:26:49.200of their condition and if they feel that way what about a kid with ms or md well i think
00:26:56.640i think that's the problem with people's uh state of mind around made sorry tom overall is where is
00:27:04.160the line and how do we draw these lines and you know how does public trust match up with these
00:27:10.720lines that could be very personal and that seems to be the complexity in this to me that's why i
00:27:18.240trying to talk about this, if not in terms of the high philosophy, the principles, but in terms of
00:27:23.880the cases. I lost my career in newspaper in the 80s because of my low vision. I have something
00:27:32.220called strabismus, which is genetically inherited. I was taking care of my father, and he told him
00:27:38.860this, and he said, well, if I'd known that you were going to be disabled, I never would have had
00:27:44.620you i said you would have lost the best nurse you ever had right the thought that this is all we are
00:27:55.600does neither justice neither to us nor to the society in which we live we are better than that
00:28:03.420and with a little thinking we can most people can say yes i understand those people who are at the
00:28:12.020end of a for instance a respiratory crisis which comes with als where there is a paralysis of the
00:28:20.740of the the breathing muscles it's something we saw in my early days in polio
00:28:26.900when people went into an iron lung and many of the case some of the cases which have come forward
00:28:33.540in canada the united states have been als patients and they do not want to end up drowning choking
00:28:40.500on their own fluids we can palliate them at that point many of them can be kept alive if they are
00:28:47.780given artificial breathing through a trach tube they can be kept alive and some of them go back
00:28:53.060to work mr justice sam fowler in ontario when he was at that stage all the doctors were saying it's
00:29:02.820going to be a lousy quality of life to his wife she said i'll take care of his quality of life
00:29:08.100you take care of his life and he went back to work on the bench for i think eight years doing
00:29:13.860administrative law incredible um and then there's several cases like that people say to me yes but
00:29:20.180i'm not i'm not like that i'm not a court justice i said no i understand but what we can do is tell
00:29:29.860you first of all we can assure that if you get to that crisis point we will provide the palliative
00:29:36.020medicine to keep you comfortable at that last those last moments that is our first priority
00:29:42.980secondly we can if you wish we can urge you to try to life afterwards we're not going to make
00:29:50.420it for you that's your choice but for some people they find that you can live in this
00:29:56.660quite altered state and do it well it's interesting that when a professional tells you to remain calm
00:30:03.140and carry on and shows you the method and the the process by which you could do this
00:30:10.660you find inspiration because i think maybe i'm wrong but i think in our hearts uh we have uh
00:30:18.900eternal hope mostly and so if we can ignite it in any way then people will grasp it
00:30:27.460when i was with the canadian i was on the board of directors of canadian down syndrome society
00:30:32.340I think the only one who was ever there who would not have Down in his family.
00:30:36.820And one of the great things that the Canadian Down Syndrome Society did was when they were informed
00:30:45.060or somebody called them for a person who was testing positive for Down, a mother and a child
00:30:53.700with Down would go and meet with them in their home. So they could see that this was not the
00:31:01.140end of the world and while the child might not become like you who wants to have a kid just like
00:31:09.460yourself no thank goodness all three of mine are very different we we matched the families
00:31:16.740to the persons to give them the better choice and option we didn't say you can't have you
00:31:23.700you know we can't you shouldn't abort you can't do that it wasn't our place to say that but by
00:31:29.140having the families meet with the person with down while they were mourning the dream of what
00:31:37.460they thought might be they could begin to have a dream of what could be fantastic what we and
00:31:44.580as i said i i deal with these stories because i believe you know i could say to you we in the
00:31:52.820hippocratic tradition of medicine life is something that we protect in the sacred it
00:31:58.180It is also in certain of the religious traditions.
00:33:56.680I was really reticent to talk to you about MAID because it's a tough topic.
00:34:02.120I've done podcasts from hospice where I had a similar experience
00:34:06.940because the right hospice near the end of life is an incredible experience.
00:34:11.880And if you love a family member and you're unable to bring them home, hospice is an incredible, incredible way to show that you love that family member, in my experience.
00:34:22.320And what I got today was another good way to show that you love your family is to try and hang in there, knowing that there are options to keep you comfortable, that there's options you didn't think medicine can do.
00:34:34.740And to be reactionary immediately is not what to do.
00:34:39.700that this is an option in our healthcare system doesn't mean that you have to race to that finish
00:34:46.580line. And talk to the other members of your family. It may be our decision, but we don't live
00:34:56.040alone, both of us. We live in a nexus of worlds. And when we talk to those we love and those we
00:35:04.040respect about our choices and about what we want somebody may say what about what are you getting
00:35:09.960for palliative medicine who's who's your doctor let's let's deal with this let's make sure that
00:35:15.800you get what you need let's call the ms society let's call the uh the alzheimer's society let's
00:35:21.720call the down we have a lot of these organizations which help you if you pick up the phone and ask
00:35:27.880the thing we have forgotten to do is to say we the hardest thing to learn when you have a
00:35:33.480disability the first thing is to ask for help once you learn to do that and once you learn to say
00:35:41.720what do you think you're 80 of the way along the way tom yeah sorry on that topic
00:35:53.160this support i'm so sorry and i'll get back to you mentioned that when you you need to ask for help
00:36:00.280you need to learn to ask for help you need to learn to ask for other people's uh opinions on
00:36:06.760stuff i'm already bad at that without having any major malady uh so it's worth thinking boy you
00:36:14.440better be conscious of that now in life because that could be the difference between a quality
00:36:19.960of life that you want and one that you're afraid to have when i wrote my first book on elder care
00:36:25.640which was about my five years of parental care called Aging Children, Elderly Parents,
00:36:30.780and Mirrored Lives, at the end of it, I had a small chapter saying what I would do today
00:36:36.320if I knew then what I know now, and a bit about how I could have planned and thought about it
00:36:41.400earlier. This was about the 1980s, remember? And I got letters from readers for literally 20 years,
00:36:50.160some of whom said, I read your book, and at Christmas or at Thanksgiving or at Easter,
00:36:55.640when the family was together, I showed them the book. I said, here's what I want to talk about.
00:37:01.080I know you don't want to, but here's what I want us to discuss together as a family.
00:37:06.240And that was the best compliment. Oliver Sacks sent me a really nice letter about it.
00:37:11.000But the best compliment was the people who said, I talked to my family after reading your book.
00:37:17.460We don't do that enough as we don't allow our professionals to give us the best opinion
00:37:25.200that they have as we agitate for a better society.