Well, of course, after I thought I had weeded out all the typos, added a reference that I was sure I had already added, and tweaked the new cover for the print version sufficiently, I still found a missing space, and one or two missing words in the proof. That’s how it goes! Continue reading
The High Court has rejected a judicial review challenging the current law which prohibits assisted dying in the UK. Noel Conway, a 67-year-old retired lecturer who was diagnosed with Motor Neurone Disease in 2014, was fighting for the right to have medical assistance to bring about his death. Commenting after the judgement on October 5, his solicitor indicated that permission will now be sought to take the case to the appeal courts.
Campaigners are often quick to highlight the strength of public support in favour of assisted dying, arguing that the current law is undemocratic. But there are reasons to question the results of polls on this sensitive and emotional issue.
There have been numerous surveys and opinion polls on public attitudes towards assisted dying in recent years. The British Social Attitudes (BSA) Survey, which has asked this question sequentially since the 1980s, has shown slowly increasing public support. Asked: “Suppose a person has a painful incurable disease. Do you think that doctors should be allowed by law to end the patient’s life, if the patient requests it?” in 1984, 75% of people surveyed agreed. By 1989, 79% of people agreed with the statement, and in 1994 it had gone up to 82%.
Detail of the question matters
But not surprisingly, the acceptability of assisted dying varies according to the precise context. The 2005 BSA survey asked in more depth about attitudes towards assisted dying and end of life care. While 80% of respondents agreed with the original question, support fell to 45% for assisted dying for illnesses that were incurable and painful but not terminal.
A 2010 ComRes-BBC survey also found that the incurable nature of illness was critical. In this survey, while 74% of respondents supported assisted suicide if an illness was terminal, this fell to 45% if it was not.
It may not be surprising that support varies considerably according to the nature of the condition described, but it is important. First, because the neat tick boxes on polls belie the messy reality of determining prognosis for an individual patient. Second, because of the potential for drift in who might be eligible once assisted dying is legalised. This has happened in countries such as Belgium which became the first country to authorise euthanasia for children in 2014, and more recently in Canada where within months of the 2016 legalisation of medical assistance in dying, the possibility of extending the law to those with purely psychological suffering was announced.
It’s not just diagnosis or even prognosis that influences opinion. In the US, Gallup surveys carried out since the 1990s have shown that support for assisted dying hinges on the precise terminology used to describe it. In its 2013 poll, 70% of respondents supported “end the patient’s life by some painless means” whereas only 51% supported “assisting the patient to commit suicide”. This gap shrank considerably in 2015 – possibly as a result of the Brittany Maynard case. Maynard, a high-profile advocate of assisted dying who had terminal cancer, moved from California to Oregon to take advantage of the Oregon Death with Dignity law in 2014.
Even so, campaigning organisations for assisted dying tend to avoid the word “suicide”. Language is emotive, but if we want to truly gauge public opinion, we need to understand this issue, not gloss over it.
Information changes minds
Support for assisted dying is crucially known to drop-off simply when key information is provided. Back in the UK, a ComRes/CARE poll in 2014 showed 73% of people surveyed agreed with legalisation of a bill which enables: “Mentally competent adults in the UK who are terminally ill, and who have declared a clear and settled intention to end their own life, to be provided with assistance to commit suicide by self-administering lethal drugs.” But 42% of these same people subsequently changed their mind when some of the empirical arguments against assisted dying were highlighted to them – such as the risk of people feeling pressured to end their lives so as not to be a burden on loved ones.
This is not just a theoretical phenomenon. In 2012, a question over legalising assisted dying was put on the ballot paper in Massachusetts, one of the most liberal US states. Support for legalisation fell in the weeks prior to vote, as arguments against legalisation were aired, and complexities became apparent. In the end, the Massachusetts proposition was defeated by 51% to 49%. Public opinion polls, in the absence of public debate, may gather responses that are reflexive rather than informed.
Polls are powerful tools for democratic change. While opinion polls do show the majority of people support legalisation of assisted dying, the same polls also show that the issue is far from clear. It is murky, and depends on the responder’s awareness of the complexities of assisted dying, the context of the question asked, and its precise language. If we can conclude anything from these polls, it is not the proportion of people who do or don’t support legislation, but how easily people can change their views.
What do I know about pain and suffering, you ask?
In view of what I have been saying and will still write about little Charlie Gard’s situation and other topics in bioethics, I feel that it is justified when people ask what experience I have with pain and suffering in (physical) medical situations.
Here are answers.
Personally, I’ve been very lucky. I have a bunch of allergies, but none very serious, and the worst medical situations I’ve had were a traffic accident that led to a very serious concussion and a broken nose (in my teens) and pneumonia (in early 2017). I’ve also undergone a simple procedure to drain my sinuses (in my early 20s). Oh, and I have pigment dispersion syndrome, a fairly mechanical eye condition that is a high risk factor for glaucoma. I don’t have children of my own, by the way.
I was born in 1960 – I am a Libra – and am the eldest of three daughters; we are 3 years and 6 years apart. (And spiritually speaking, a universe…) My mother first had a miscarriage after me, a baby boy who would have been called Paul, which is why the name of my teddy bear was Paul. (I didn’t name him.) Shortly after my birth or my sister’s birth – I don’t remember which it was; she told me about this much later – my mother found a lump in one of her breasts. She was told it was just a swollen milk gland and went on with her life.
There is a possibility that my mother was given DES (diethylstilbestrol) after that miscarriage. Both my sisters (and I) are cancer-free, to my knowledge. My sister has had two C-sections, however, and in theory, DES may have played a role in my mother’s illness, if it was given to her, though even then, it is only associated with a modestly increased risk of breast cancer.
(My other sister has no children either.)
As my mother’s was the only case of breast cancer in my maternal family that I am aware of, there clearly doesn’t seem to be a particular gene involved. My sisters and I have long passed the age at which my mother contracted breast cancer.
My mother had all her teeth removed surgically as was still often done in those days, after which she came home in an ambulance and spit a lot of blood into a bucket beside her bed. She had surgery for a large kidney stone which she got to take home in a little tube and which had caused a pain in her flank. I think that kidney surgery was in 1968.
(Off and on, you can hear from my phrasing how young I was at the time, how much or little I understood about what was going on.)
She became increasingly unwell and was unfortunately sent to physical therapy… sigh… because her cancer had already metastasised so much that it had gotten into her bones. She’d come home in incredible pain. I don’t remember what got “them” (whoever) to figure out that something else was going on.
The breast was surgically removed and the wound never healed, no matter how much ointment was applied. The cancer also affected my mother’s vocal chords; she told me that if she’d been for example a teacher, she would have needed surgery for that as well. She was treated by Dr Lokkerbol (who received training in the UK, by the way), underwent radiation (cobalt) and had some kind of chemo (not “real” chemo, but I can’t explain what wasn’t “real” about it, other than maybe it was less aggressive and didn’t make her go bald). It was (also) administered at home, by a nurse.
It was a slightly yellowish fluid that came in glass ampoules. It was not very stable and I’ve had to tell the pharmacy several times to return it when I could see that it had already gone bad (flocculation/crystallization). My mother’s white cells were monitored because the chemo made them go down and when the number of white cells declined too much, the administration of the chemo had to stop. This was the opposite of leukemia, my mother explained to me, because then you had too many white cells.
She had increasingly trouble walking, needed a cane, and in the end couldn’t even go to the bathroom unassisted. I remember helping her, holding her arm, steadying her, and wondering how my mother was feeling about her daughter helping her go to the bathroom. My mother had had a very happy childhood, but was raised in a fairly old-fashioned manner, after all. One did not talk about periods, for instance. They were a dark secret best kept to oneself. Sanitary napkins as big as diapers were provided and a special kind of (horrible) lined underwear, and that was that.
Also, my youngest sister almost died too in the meantime when her appendicitis was misdiagnosed as a bladder problem. That misdiagnosis is quite common, but if it hadn’t been for my father’s vigilance, my sister really might have died. Her fever ran up to nearly 42 degrees C and the hospital was cooling her with ice. They couldn’t operate, had to wait for my sister to stabilize first. I think my sister was 4 or 5 at the time. (Children visitors weren’t allowed on the ward, by the way.)
Anyway, I must have been in my 5th year in primary school (which has 6 years in total) when my mother became increasingly unwell as I was taking French conversation classes in our local city centre – my mother loved how the language sounded and loved saying mu-sjuh even though its proper pronunciation is muss-yuh – and I had to be taken there and collected again. I was able to finish the first year, but there was a second year, in my 6th year in primary school, from which I had to drop out pretty soon. Taking me to the language school and collecting me often was arranged in conjunction with hospital visits one way or another until that was no longer possible. (I later also sometimes or often accompanied my mother to the hospital shortly before she died, by the way. I had Wednesday mornings off in the school year in which my mother passed away. There were so many students that year that the school was forced to introduce early and late classes.)
Meanwhile, our dog got cancer too and had to be put down. She was 6 months older than I was.
Then one day, my mother’s favourite sister stopped by. She sat on the wooden bench in our large kitchen, in a serious conversation with my mother. I don’t remember whether she was on her way to or on her way back from a hospital visit. I think she was on her way home, though, and had decided to stop in on my mother to tell her about how she’d been bleeding. The bus she took passed our house and the bus stop was very close to our home. My mom’s sister – my aunt – died shortly after that visit. That must have been cervical or uterine cancer.
During one of her many hospital stays, my mother said no and put her foot down when they wanted to place her in the room in which her sister had died. (My mother had also said no and put her foot down when the kindergarten teachers wanted to keep me for another year because I was so young, at 5. I went on to be the youngest in my class and the one with the best grades for 6 consecutive years in primary school, so thanks, Mams.)
Meanwhile, one of my mother’s older brothers had been diagnosed with a brain tumour after he developed problems with an arm. The doctors didn’t tell him at the time; presumably the tumour was inoperable. I don’t know which symptoms that eventually resulted in, but when the decline came, it happened fast. He passed away shortly after my mother, who passed away in her sleep at home in February 1975, my dad and one of my mother’s brothers sitting next to her, my dad asleep at the time, but awoken by my uncle. My mother was only 42.
Everybody responds to these situations in their own way. There is no right or wrong about it. My mother’s family seemed to deal with her death in their characteristic cold manner (stiff upper lip). One evening, I found them arguing outside with my dad over the exact wording in an announcement that had already appeared in a newspaper (so the arguing served no purpose, in my eyes). It got too much for my dad (complete lack of stiff upper lip) who literally ran off, onto the moors behind our home. I shouted at my aunt and uncle that they had to understand that the man had just lost his wife, for crying out loud, and went to retrieve my dad. I was angry with my relatives, back then, but I can see now that they merely were dealing with the situation in the only way they knew. My dad was often angry with the medical profession. It wasn’t always justified – sometimes it was just his powerlessness talking – but in some cases, he certainly did have a point.
Both my parents had little education beyond primary school, by the way.
By contrast, my mother’s mother passed away at 91 or thereabouts, after these three of her children had died. She had already lost several children at very young ages as well as her husband. I have a lot of my grandmother in me, which is only becoming clearer as I am getting older. It is a very interesting observation, one that makes me smile and makes me feel more connected with her, and with my family in general.
My other experiences with medical situations are fairly “remote”.
My mother’s remaining sister passed away of stomach cancer, but she was in her 80s then. Stomach cancer is often diet-related, so I understand. One of her remaining brothers passed away from lung cancer in his 70s. He’d been exposed to a lot of dust and had been a smoker (cigars, though he probably smoked cigarettes when he was younger). He also was incredibly stubborn. (I can’t help but wondering whether he perhaps was also allergic to wheat, barley and rye, which can cause lung problems, and which wouldn’t have helped. Besides cancer, allergies seem to run on my mother’s side of the family.) The remaining brother passed away “from old age” as far as I know. I wasn’t around for any of that as, again, I was out of the country.
My father was diagnosed with pneumonia in October last year, and with lung cancer in November; he passed away shortly before Christmas, and was 83 at the time. I wasn’t around for that either.
I know that one of my French-born cousins on my father’s side contracted lung cancer in her 50s or so and passed away shortly after that, leaving a child of only 12-years old or so behind. My cousin’s husband had died shortly before her. Another cousin then adopted the child, bless him.
I know of and knew 5 or 6 women in science who fell ill in their 50s, were diagnosed with cancer and passed away shortly after. I’ve been to the homes of a few of them. A business partner contracted prostate cancer at an age much younger than usual, seemed cured and then succumbed after all. Dammit. He called me in 2010, and explained to me everything that had been going on and I am still grateful for and touched by the vulnerability he was willing to show during that conversation. (I wish I could have been there for him a little bit more than I was able to at the time.) I know one brilliant woman in science who was also a dedicated and talented modern dancer who very cruelly developed progressive MS and my heart bleeds for her as I am typing this. (This situation particularly makes me feel angry and powerless, by the way.)
I also used to have an older friend whose health started to falter when she was only in her 50s. She already needed a hip replacement then. During the surgery, the surgeon accidentally cut through a muscle, which was discovered during a second surgery after she had fallen and needed surgery to repair the damage of the fall. After that, she was so happy she could walk normally again. (I can still see her in her flat, proudly and delightedly showing me that she could walk again, walking back and forth. Look, look! “Ik loop weer als een kieviet!”) She later contracted two kinds of cancer (one of which was leukemia) and passed away too, but I was not around for that. (Her partner, whom I also used to know, developed cancer of the esophagus. He passed away at home, made comfortable with a lot of morphine, his feet being massaged at the time. Some things were definitely done right in that case. I was not around, not in the country.)
Yes, I also know a few people who had their gallbladders removed, usually very urgently, but that’s different. There are other people, of course, who have crossed my path and who have experienced medical tribulations – one of them a Dutchwoman in France who beat a very bad cancer prognosis – but I can’t really claim them as part of their life. And of course, there are other kinds of pain and suffering, but I am leaving that for another time (see this post).
Having seen my mother suffer for so long, witness her be in pain for so many years, made me immensely relieved for her when she passed away (though for myself I despaired). I therefore must always be aware of having an emotional response when someone is seriously ill. I do not believe in extending life artificially as long as possible in all situations. It can be very selfish and be the expression of a consumerist view of medicine. Doctors are not omniscient and omnipotent. They are mere humans, just like all of us. Nature – life – is still the real head honcho, when it comes to the crunch.
(But, I’d probably have loved to be a veterinarian, I realized late in life. A false belief that I was squeamish – am not – and couldn’t handle the sigh of blood – I sure can – kept me out of it. When I was volunteering in wild-bird rehab and they called me inside after someone else had fainted, that slowly became clear to me and I did explore that. So I can probably put myself in the shoes of the doctor somewhat and for instance understand that what may come across as arrogance in doctors often isn’t. This does not mean that I don’t get ticked off at physicians who really are out of line, of course.)
So like I said, I have to be aware of my own feelings (a gut response which I may not always notice right away) and therefore I try to apply logical reasoning – which can come across as very cold – as much as possible. That is also the way to arrive at just (fair, unbiased) conclusions and definitions that hold up regardless of feelings or believes and protects against abuse and arbitrariness. It has a highly clarifying function. It makes things a lot clearer. It is also highly practical.
There was a time when we pointed the fingers at doctors and accused them of playing God when they helped patients stay alive. Now we’re often quick to accuse doctors of playing God when doctors don’t want to force anyone who isn’t viable to stay alive. Technology is starting to make crucial differences. This leads to many very difficult questions about which we – preferably in a global consensus – have to make decisions. We need to start agreeing on what we do want to do and what we don’t want to do. We need good guidelines.
For the record: Notably my middle sister will remember a different past. She had a persistent skin (yeast?) infection as a newborn, I think, but as I was 3 at the time, can I really have remembered that? May it have concerned my youngest sister around whose birth I was sent to stay with an aunt and uncle? I remember that I was not sure if she was real, at first, as a newborn baby. (She looked like a doll!)
But my middle sister also had children’s diseases that my youngest sister and I did not contract. She experienced mumps, whereas we all fell ill with measles at the same time. She also was ill with jaundice as a child (presumably due to some kind of liver infection; the common Dutch phrase was “yellow paint”). Both my sisters got chickenpox as children, which I had when I was in my early 20s. And, my middle sister was sent away to stay with an aunt and uncle around the time of my mother’s death; she once told me that herself and I had not remembered that. So her memories are very different.
That must have been very hard for her because I do remember that when she was 4 or 5, she insisted on seeing our paternal granddad before he died, tubes and all, in hospital, and fought to be kept out of school that afternoon. (None of us three had been close to him; I don’t think he was a pleasant man at all.)
We all deal with pain, suffering and death in our own way. There is no “right” way or “wrong” way.
Both my sisters saw my mother after she had passed away, at the funeral home. I never saw her dead. I didn’t want to. I wanted to preserve the memory I had from when she was still alive. She used to sing often. and was often pictured with a very broad smile in various photos before she became really ill.
Initially, it felt wrong to say much more about it than that. So I didn’t.
A day has passed.
Many lessons are being learned, and Charlie Gard’s life and death have not been in vain. I too will be doing a write-up. For the sake of future Charlies and future babies’ parents, but also for the sake – I hope – of all the people who were touched by Charlie Gard’s short life. Towards greater understanding, I hope. Towards more compassion, too.
(Personally, I primarily do it to learn from it and because I enjoy the analytical process and the reasoning. But all the people who write about these issues help pave the way to a future in which we deal with such situations much more elegantly.)
I too felt torn the way everybody else seemed to be torn, and I too generally responded more emotionally rather than rationally to what I read here and there, and I too, like almost everybody else, didn’t have many facts.
Charlie Gard’s condition fell within my definition – not my feelings! – of what constitutes a life not worth living. We need objective definitions to prevent inequality and injustice, and, more importantly, to prevent harm.
I also seem to have managed to define harm for situations like these a while back, and having let Charlie Gard try the nucleoside therapy does not appear to qualify as such within my definition (which I need to write up properly). Whether or not Michio Hirano had a financial interest in the matter is immaterial.
So I have a lot of thinking – and writing – ahead of me, but it looks like my definitions continue to hold up. That comes as a surprise. It makes me conclude that I may be doing something good and useful, something worthwhile exploring.
That’s scary – for several reasons – and powerful – empowering – at the same time.
I will soon post something about my own experiences with this kind of pain and suffering – the medical kinds of pain of suffering – in view of the fact that I say so many things about other people’s pain and suffering in such situations, in what may occasionally come across as a cold and calculated manner to some.