Jill over at Feministe has an excellent commentary on a new bill introduced in the U.S. House of Representatives that would allow doctors to refuse therapeutic abortions even in life-saving cases. Thomas over at Blog for Choice also posts some commentary and links to further information. Whether you are pro-choice or pro-life, you should oppose this bill. After all, if the prgnant woman dies from lack of proper care, her fetus dies, too. I encourage all my U.S. readers to call their representatives to prevent the passage of the Ending Lives Act, as I call it.
Archive for the ‘End-of-Life’ Category
The Dutch pro-euthanasia association, NVVE, is planning to open an end-of-life clinic in 2012. Here, severely ill people who are unable to find a physician willing to assist with their euthanasia, can come to die. The clinic is completely legal, according to both the NVVE and physician organization KNMG. In the Netherlands, people who suffer unbearably and without a prospect for improvement, either physically or mentally, can get euthanasia if two physicians agree that they meet criteria for it.
I for one agree to the idea of this clinic, even though I’m not 100% pro-euthanasia, as long-term readers of this blog will know. The reason I’m not in favor of euthanasia is, however, that there is a risk that doctors and family will push the decision onto severely ill patients, and that it is discriminatory that only those with certain conditions can be assisted to die. In this clinic, however, patients are accepted who themselves strongly wish to die but cannot find support for it. In other words, it is patients’ own decision to seek euthanasia. I do have a problem with the short stay patients are given in the end-of-life clinic: patients are supposed to be euthanized within three days from coming to the clinic. This makes dying somewhat too easy.
Sometimes, it would’ve been easier if I were still radically pro-life, so that I could tell anyone supporting abortion or euthanasia that people have no right to take the life of anotheer person, no matter how dependent that person is on someone else. Yet I recognize a person’s right to bodily autonomy, too, and for this reason, should be pro-choice: no matter how many alternatives to parenting exist, there is no alternative to gestation other than to terminate. Therefore, if pregnancy threatens a woman’s health or wellbeing – even if that threat is motivated by factors related to the unborn child she carries, such as if that child has disabilities -, the only option to relieve that threat or discomfort is to terminate the pregnancy. If you believe in a person’s right to do with their own body as they please, therefore, you must automatically be pro-choice on abortion.
But what if you do not want a child, and that child is born? If not wanting a particular child is a valid reason to abort when the child is still in your womb, isn’t it a valid reason to terminate the child once it is born? In my opinion, no, because, unlike gestation, parenting by a specific person is not a necessity to keep the child alive. A parent can choose to give a born child up for adoption, or, if the child has disabilities, can choose to put them in a care home. Of course, care homes may provide less-than-optimal services to children, and adoption might affect the child’s mental health, but the solution is to improve care and adoptive services.
It is interesting, of course, that infant or child euthanasia is only legal on children with disabilities, whereas abortion is legal on any fetus up till viability. If being a burden on one’s parents were a legitimate reason to kill, and if it didn’t matter whether a child is still in the mother’s body or not, and if alternatives such as adoption aren’t relevant, either, then euthanasia should be legal on any infant. Also, if the fact that the infant cannot make their wishes known and therefore has the parent make these decisions for them, that should go for any infant, too. No baby can tell their parents that they want or don’t want to die, and any baby could grow up to be a pain in the arse of the parents.
So why is it all about disabled children? It’s probably that it is abled people making these decisions. They think that living in a marginalized body somehow makes you less of a valuable human being. Not only do they allow euthanasia of consenting adults only if the adult is disabled enough by someone else’s standards to be worse than death – despite the fact that people with the same disabilities might live happy lives -, and not on non-disabled people who “suffer life”, thereby stripping adults of the right to decide what to do with their own lives. On top of that, it is only abled people who can decide that a certain body type makes you worse than death, even regardless of your own opinion if you’re a child, regardless of whether other children with the same disabilities live happy lives. In fact, infant euthanasia with parental consent goes farther: if a parent is unhappy, that is a reason to kill the child, regardless of whether other parents may be happy to parent a disabled child, or this specific disabled child.
In short, abortion is legal on any infant up to viability, because this is the only way to relieve the pregnatn person of the discomfort or threat of gestating. On the other hand, once born, if your parents view you as a pain in the arse, but only if you also live in a marginalized body, you can be killed with these parents’ consent if they feel unhappy about parenting you, regardless of how easy it is to get rid of you without killing you. And even if abortion is not merely about bodily autonomy, am I still the only one who perceives a double standard here?
The reason I have always considered the fetus a person – a significantly dependent person, but a person nonetheless -, is that I have never been able to find a non-arbitrary point at which the fetus could possibly acquire personhood. If birth is said to be the criterion, preemies acquire personhood at the same developmental stage hat those who could be born at full term, do not yet possess personhood yet. And if some arbitrary ability – such as the ability to think or feel – is used, there is always the risk that some born persons do not meet this criterion. Even the presence of a cerebral cortex at twelve weeks gestation – except when the fetus is anencephalic – becomes arbitrary here.
The criterion used in the Netherlands to guide abortion law, is somewhat complicated. According to the letter of the law, viability is the point at which no abortions can be performed anymore. This makes sense, in that, once a baby/fetus is viable outside the womb, there is no longer a need to kill them to relieve the pregnant person of the discomfort or threat of gestating.
However, where our law becomes complicated, is that it restricts abortion to the first 21 weeks of gestation. That used to be 24 weeks, but it was determined that babies born at 22 weeks, can survive. Now that seems alright, except that babies born at 22 weeks are not viable in the Netherlands. That is, neonatology has decided it will not resuscitate or treat babies born before 25 weeks gestation – and every baby born at this gestational age, will need these. Yet abortion law has decided that babies are viable by 22 weeks. Who is right here: abortion legislators or neonatologists? Some of my readers may know that I’d side with the abortion legislators here, as I am a strong advocate for the treatment of premature infants regardless of gestational age. However, as long as no neonatoligist in the Netherlands is going to treat babies born at 22-24 weeks, the limbo remains.
Yesterday, my boyfriend sent me a NYtimes.com article on brain activity in people in apparent vegatative state. The study the article discusses examines the possibility that some people in a vegatative state – that is, people who have opened their eyes and for this reason are not in a coma, but who give no further response to their surroundings -, may be able to communicate in simple “Yes”or “No” answers by showing distinct brain activity on MRIs. Note that this capacity is likely pretty rare, so it isn’t like all people in a vegetative state would be able to communicate if we just gave them the technology (that is, an MRI scanner to track brain activity) and training to. I am not even going to look at the sensationalist pro-life commentaties with little if any scientific merit that will undoubtedly come out, and as it appears, Terri Schiavo doesn’t have a thing to do with it, because this capacity cannot possibly have been present in her. However, what the study does say is that clinical judgment may not be sufficient to determine that a person is a “vegetable”.
What, however, is the problem with this study? What would actually be wrong with the possibility that a few “vegetative” patients can learn to communicate with technology? That this technology – and the extended nursing and medical care patients would need if allowed to live longer – is so expensive that they presumably don’t deserve it? That it is creeping to know that people presumed to be “vegetables” might be able to communicate after all, and might be able to make their wishes known despite our previous conception that they can’t? That our former conception that someone who merely “vegetates” is not worth living, is being challenged? In reality, that isn’t true, since we don’t need hidden abilities to question this presumption: why is it that (meaningful) communication is always presumed to be a preqequisite for human worth, anyway? I have never understood the concept of PVS, in that I believed that, if a person could be fed through a feeding tube, why would they be considered “brain dead”? Since having studied neuropsychology, I realized that what is really meant by PVS, is not a coma, but the (perceived) inability to do anything other than consuming food and hydration. That would’ve been obvious from the term “vegetative”, but it wasn’t to me.
Now of course this study does provide some challenge to the idea that people who cannot clinically be found to communicate, are “vegetables”. In fact, I am surprised to find out that, until now, only clinical judgment was used to assess people for “vegetative” state, because clinical judgment could create massive errors. Of course, it is useful – brain scanning may not have any real-life validity, after all -, but it isn’t the only possible way of determining activity and potentially cognitive skill. For example, when I first read about a patient with what is called locked-in syndrome, I always wondered how doctors would diagnose this, as opposed to vegetative state, in a blind person. LIS is characterized by total paralysis except for upward eye movement, but cognitive abilities are usually intact. It is usually assessed by a clinician by determining a person’s ability to track a light beam. Clinical judgment would obviously not be sufficient in diagnosing this condition in a blind person, so I do have to wonder whether one has ever been reported and, if so, whether brain scanning techniques have helped.
Brain scanning and the potential hidden abilities this can reveal, however, do not challenge any preconceived notion that meaningful communication is required for human worth. This is really at least as troubling as the possibility that advanced technology could reveal hidden abilities that are missed on clinical evaluation. Are we somehow imposing abled standards on profoundly disabled people’s quality of life if we judge them worthless without meaningful (by our own standards) interaction? What about the inherent ableism in the notion that merely “vegetating” is equivalent enough to death that euthanasia could be provided? We cannot consult someone in a PVS on this matter, of course – at least, not someone who cannot be found to communicate even with current technology -, and the Terri Schiavo case did illustrate the potential problems with advance directives. In this sense, the “right-to-die” controversy will always be political, no matter how far medical technology will go.
Just read on a Dutch health news site that it is being proposed to change the rules for infant euthanasia (currently regulated under the “Groningen protocol”) again. The argument is that they are not in line with current practice, and therefore, physicians rarely submit euthanasia cases for review to retrospectively judge whether the rules were followed – because, it is suggested, they know in advance that they weren’t. Should the guideliens always be molded to suit actual practice? After all, euthanasia legislation, presumably, was introduced to actually provide regulation of practice; what use is there in having any guidelines at all if they’ll seemingly blindly legalize whatever is already happening?
Now what does the discrepancy between the formal guidelines and actual medical practice entail? There are two common discrepancies: firstly, doctors don’t regard lethal doses of pain medication as active euthanasia if they delude themselves into thinking the medication was necessary to relieve the infant’s pain. If they know that only a lethal dose of pain medication could alleviate the pain, why won’t they obtain consent from the parents to administer a drug recognized as an euthanatic? Unbearable, untreatable pain is a legal reason for infant euthanasia. The proposed change of guidelines hopefully involves the statement that purposefully administering lethal doses of pain medication, is active euthanasia.
The second discrepancy was the one that caused the most concern for me, especially if the change of guidelines proposed is actually being implemented – quite likely, knowing my country’s attitude to euthanasia, it will. The discrepancy involves the fact that the guidelines mandate that only the infant’s current health state should be considered in decisions involving euthanasia. In medical practice, however, infants are euthanized because doctors believe that they will meet the criteria for euthanasia in the future. This seems comparable to the decision not to resuscitate preemies below 25 weeks gestation, because of their risk of severe disability and their small chance of survival. I have always opposed this statistical elimination of people based on presumed future “quality of life”. Not surprisingly, I also oppose this logic when applied to active euthanasia, with the addition that active medical intervention is required for euthanasia, while non-resuscitation can be seen as abstaining from treatment. These are different things. If the infant doesn’t currently meet the criteria for euthanasia, why can’t doctors just wait and see how the child will come out? Infants are incapacitated anyway, so it isn’t like you have to act quickly enough for them to be able to give consent (which is a controversy with elderly people with dementia) – when taken to extremes, actually, the opposite is true, because the child will eventually gain the right of informed consent if they make it to age twelve years. I honestly don’t see what reason doctrrs have to actively euthanize an infant, who doesn’t currently meet the criteria for euthanasia, because they may in the future.
The news story did not tell which future health concerns were considered when euthanizing infants whose current health status doesn’t warrant euthanasia. Are they all infants who may not currently be in unbearable, unmanageable pain, but who will reach that level in the near future or when aggressive treatment is not performed? Is, therefore, euthanasia a way of preventing the infant from unbearable suffering? For clarity’s sake, even if that is the case, I don’t agree with infant euthanasia, but it is at least more ethical than if more abstract concepts of “quality of life” were used. We do not know whether some infants are euthanized without currently meeting the criteria, because of concerns about their lack of any “quality of life”. For example, have infants been euthanized because of profound physical or cognitive disabilities, without these disabilities causing any significant suffering to the infant, for concerns of “quality of life”? I do not know this, but I’m deeply concerned that it has most likely happened.
I just found out that a man suffering from cancer killed his demented wife and then himself to prevent her from being a “burden” on their children after his death. Wesley J. Smith comments on the case over at Secondhand Smoke. He writes:
The message that it is worse to be a burden than dead is being broadcast and received–and stories like this tragedy, I believe, are a direct consequence. It’s a very scary time to be old, disabled, or needing care.
That sounds dramatic. Too dramatic, in my experience of being a person with disabilities. It isn’t like every nursing home or institution resident is greeted by a nurse: “Oh, you want me to change your diaper? I’ll gladly do so if you take your [deadly] pill first.” That sounds ridiculous, and it is. This is why I become angry when pro-life activists, including Smith, say that the Netherlands have become a “nazi” country. The ridiculous statement I just made is among the things the nazis did to their disabled people, and it is not what happens anywhere in the world, and if it did, people everywhere would call for harsh legal penalties. Yes, including in the Netherlands.
But this is not what worries me about the “burden meme”. The changes in practice that are likely to spring from this cultural shift, are likely much more subtle. There have already been cases where insurance would pay for euthanasia, but not for (expensive) treatments that could save the person’s life. This may get worse as our medical knowledge increases and we are more able to keep people alive, at a higher cost to society. It is, after all, a fact that disabled and elderly people are expensive if they need care.
Expensive. Even without any reference to euthanasia or even being a burden, the system already makes it quite clear that elderly and disabled people are expensive. This expense is the reason not eveyrone goes into a care home anymore when they’ve reached the age of 65. Rightfully so, in my opinion, but it now goes farther than it should go. People receiving long-term care, especially those who aren’t supposed to fall within the groups it was “originally intended for”, are often classified as “expensive”. Long-term care was “originally intended” for people with severe developmental and physical disabilities or advanced demtnia. I am, therefore, one of these “expensive” people the long-term care system wasn’t “originally intended for”. I know what my former locked ward placement cost, because my insurance company paid the first year and sent me a transcirpt of the healthcare services it’d paid for (so that it could tell me that I had to pay them E155 in deductible, LOL). People with terminal illness are also judged to be “expensive”, as it used to be quite hard for them to get funding for palliative care beyond I think either three or six months, should they unexpectedly survive this long. Yes, I know that medically speaking, they wouldn’t have been considered terminal in that case, but so far, doctors are not able to predict the exact date someone will die unless they choose euthanasia. Fortunately, that legal loophole was fixed, so people with incurable cancer are not forced to get euthanasia once their funding runs out.
Of course, there are sitll people who refuse to accept services that do exist. We do not know what happens to services for demented people in the UK in the future, but the wife in the news story could’ve gotten home care if her husband wanted it. This is where being a burden in other than financial was comes in: people with severe illnesses are an emotional burden on their families, supposedly. With the fact that, even if professional care was accepted, the husband would’ve been expected to help unless he obviously couldn’t due to his cancer (at least in the Netherlands), it is unlikely that the “burden” wouldn’t exist if the husband just accepted help.
Besides, even if the wife were able to get all the home care she needed, it is currently considered significantly burdensome to watch someone else suffer. I guess in this sense euthanasia is what exclusion was in the times of leprosy-stricken beggars and institutionalization was in the times of, well, mass institutionalization. Maybe these were the results of the “burden meme” back in the day.
Over the last few days, I’ve come across a few blog posts on the subject of quality of life, as it relates to euthanasia and assisted suicide. Note here, that my opinion about assisted suicide and euthanasia is not based on some kind of mantra that says that everyone has an obligation to live until “God” decides their time has come. I think that we have as little right to decide for someone else that they must live, as we have to decide for someone else that they must die. And this is exactly where euthanasia and assisted suicide become troubling: how can we be sure that people dying are not being coerced in any way into making that decision? Pro-euthanasia groups, in fact, sometimes advertise euthanasia as a way of giving family members the “gift” of no longer being a burden. Well, in all blunt honesty: euthanasia is about an individual’s *right* to die and it should stay that way. How much of a “burden” that person is, should not matter.
It gets more troubling when euthanasia on children is concerned, because children cannot make medical decisions independently. In the Netherlands, euthanasia on children under twelve has been legal since 2006 under the “Groningen protocol”. I will not doubt that parents know their children best – and certainly better than any kind of pro-life or disability rights organization or individual who has never met the child. I will also not doubt that the parents who have so far had their children euthanized under the Groningen protocol, loved these children deeply. But is love and “knowing best” enough to decide for someone else that they should die? After all, it is quite likely that the children were quite a burden on their parents, because all of them have serious disabilities or illnesses. Can we be sure that the parents really make a judgment about their child’s quality of life, rather than their own? And since we cannot be sure about this – in fact, quite likely, the parents’ own quality of life will play a significant role in their decision -, can you really say that a child under age twelve “has nothing to want”, as my father once said about severely disabled children?
But it gets more troubling. Who decides what is “quality of life”, anyway? Quality of life can be defined in two separate but related ways: someone’s subjective reporting when asked to judge their quality of life, which can depend on whatever the individual person considers determines this, and the more objective measurement of quality of life with (standardized) questionnaires, that measure whatever the creator of the quesitonnaire considers determines quality of life.
The people who “invented” the concept of quality of life, and who mostly decide what it is, are not individuals with disabilities or even their parents. They are healthcare professionals and scientists. Now I have nothing against healthcare professionals or scientists, except that the majority does not have significant disabilities or illnesses. I’m not even sure whether the creators of quality of life questionnaires, even asked the input of people with the disabilities and illnesses they were going to use the questionnaires on. Quite likely, the people who desinged the Expanded Disability Status Scale (EDSS) never asked people with multiple sclerosis which of their symptoms most disabled them. Not surprising that we now have a scale that relies heavily on the ability to walk, notwithstanding the fact that using a wheelchair usually provides a huge amount of freedom.
So what do professionals who decide what determines “quality of life”, base their decisions on, if not the input of people with disabilities and illnesses? My inclination is that many rely heavily on the things they themselves consider to give value to their lives. For example, in the debate over whether preemies below 25 weeks gestation should be resuscitated, both sides throw in IQ. The pro-resuscitation side says: “But some people will have an IQ far above 100 and will later go to university.” The anti-resuscitation side responds: “But there are also people who will have severe cognitive disabilities and will be institutionalized by their teens or early twenties.” Now of course outcome isn’t black-or-white and you can’t tell which individual preemie will fall off on which end of the outcome fence twenty years from now anyway, so I’ve never understood what sense this statistical calculation of life and death makes. But even if there were a way to determine a preemie’s future IQ with relatively high certainty, or when we’re talking about children who are older and whose IQ can already be measured, it still makes little sense to relate quality of life (and from there on, euthanazibility) directly to IQ. From the doctor’s point of view, it may, in the sense that he would not have had his job if he didn’t have his high IQ (presuming he considers his job enriching and contributing to his quality of life). But for an individual child, there are many other variables that influence a child’s quality of life. For example, the family’s attitude towards the child’s disabilities can make a huge difference. Same for the school’s attitude. Access to medical care makes a difference. So does the family’s support network (both professional and social). Individual factors will also contribute: I was annoyed when a pro-resuscitation doctor once brushed off behavior problems in children with normal IQs as “annoying”. As a side note on this, access to mental health services for the child and/or family, if needed, of course. These are all circumstances that vary considerably, and which are entirely unrelated to a child’s level of cognitive functioning. None of these are medical factors (no, access to healthcare is *not* a medical factor, it’s a social factor!). Very few of the outcome measures doctors use, can actually be linked directly to a medical factor. For example, high school graduation could be related to IQ, but a highly-intelligent person living in a poor neighborhood, is quite likely to be undereducated, while a child with a lower IQ may attain a higher academic level due to his parents being able to send him to the best private schools.
Now remember what is at stake here: the child’s life. Children who are said to have a poor “quality of life”, whatever that may be and however it may be determined, are euthanized, one might hope with parental consent. If the child is a premature infant, they’re simply left to die, without parental consent often. The reasons they are better off dead, are determined by doctors and other healthcare professionals who most likely don’t have any of the disabilities they consider so seriously incompatible with a meaningful life that they’ll approve the children’s euthanasia (or in many cases even participate in it). Many are also not parents of disabled children, so even if these can be said to advocate for their children even in such serious matters as the child’s “right” to die, doctors often don’t know what it’s like. If a parent doesn’t mind raising a child with severe disabilities, their preemie of 24 weeks will still not be resuscitated due to, well, what? The cost to society should this child end up with a severe cognitive disability and indeed be institutionalized, maybe? I think it’s ironic that healthy, non-disabled doctors judge the quality of life of people with disabilities they haven’t had either first-hand or second-hand experience with.
Last week, Mencap, a UK advocacy group, published a report detailing six cases in which developmentally disabled people died because of poor healthcare (PDF-file). The reasons for these people’s deaths ranged from the failure to insert a feeding tube after a Down Syndrome patient was left unable to swallow by a stroke – a practice that, by the way, is commonplace on the demented here -, to lack of treatment for a broken thigh because the person and his family couldn’t get the doctors to believe he was in severe pain. Some of the cases are outright discrimination, like a woman with a severe cognitive disability who was denied cancer treatment and expelled from the hospital in serious pain because her behavior was “too difficult”. Other cases maybe weren’t intended this way but got this bad due to the staff not having a clue how to deal with the developmentally disabled and not caring to learn.
In the Netherlands, there is a subspecialty under post-graduate general practice schooling where doctors are trained specifically to deal with people with intellectual disabilities. I recently read an article mentioning the value of these doctors, because many problems are overlooked in the mentally retarded (the article talked specifically about vision problems). However, sometimes, I can’t keep from thinking that these doctors could just as well pave the road to disability discrimination, if their association issues unfavorable statements about ethical concerns. I have yet to look up their position on relevant issues, but would be not at all surprised if they’re the frontrunners of eugenics. And this is when it could be so much better: these doctors are trained to work with people with cognitive impairments and to be aware of possible health risks. They could be of great help in situations were the possible cause of death is carelessness. However, where outright discrimination is the problem, doctors specially trained to work with this population could fight on either side of the matter, and it would be a grave concern if they happened to fight on the discriminatory side.
I’m shocked. I live in the Netherlands, I am pro-life, and yet I was not aware of this until now: infant euthanasia was legalized here in 2006! It doesn’t make a real difference in a sense, in that the so-called Groningen protocol – by which children under age twelve years with severe disabilities can be euthanaized with parental consent -, had already been officially tolerated (a procedure by which the doctor’s murder charges will be dropped by the prosecutor) since 2004. In fact, the way I found out about the legality, is through a report that claims no infants have been euthanized in 2007 – which obviously isn’t saying that it really doesn’t happen, cause passive euthanasia is not counted.
However, what strikes me is that in other cases of crimes that are officially tolerated, like selling soft drugs at so-called “coffee shops”, there’s lots of media coverage whenever a politician calls for legalization. In fact, soft drug sales have been officially tolerated for thirty years, and politicians are still falling over each other in the debate over whether the practice should be legalized. Now I happen to support the legalization of soft drugs, so it feels nonsensical to me that politicians are still fighting over it after this long and the media is grossly overemphasizing the subject, but it really points out how careless our people are about disabled life, if infant euthanasia can be legalized with hardly any media coverage or political outcry two years after its officially being tolerated. Maybe the issue would’ve gotten more attention if the legalization attempt had been done in 2007, because the Christian Union, one of only two pro-life parties in the Netherlands, came onto the government then. It’s still a very small party, so unless the party had made it a “breaking point” during government agreement negotiations, the practice would still have been legalized. But then still, how can it be that the Dutch people are not notified through the mainstream media that euthanasia on children is about to be legalized. We are, unfortunately, not a pro-life country at all, so maybe the media don’t care about the ten or so children each year of whose euthanasia authorities are notified.