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 a universe, it seems). My mother 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.
The farm on which my mother grew up.
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.
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.