watch now! detail...
>>joy cardin: should a teenager with a disability,an incurable and degenerative condition, have the right to choose to die? we are going to talk about the case involving anappleton teenager who decided to stop using a ventilator that helped keep her alive, andwho passed away in late september, and the national reaction to this from disabilityrights groups and medical ethicists. i’m joy cardin.this is the ideas network of wisconsin public radio we are going to talk about a case involving an appletonteenager who suffered from an incurable degenerative condition. and she chose to remove her ventilator, to stop using her ventilator, and wanted to die.
she did pass away in late september and there’sbeen a lot of reaction to this case from disability rights groups and medical ethicists, and wethought we would talk about it this hour, and wonder if you think a teenager shouldbe able to make this decision. the decision did have the mother’s blessing,but should a teenager be able to make this decision? 1-800-642-1234, or send an email to talk@wpr.org. you can also post on the joy cardin show facebookpage or tweet us @joycardinshow. carrie ann lucas is a child welfare law specialistand the founder and executive director of the organization disabled parents rights.
good morning. >>carrie ann lucas: good morning. >>joy: thank you very much for being withus. well, appleton teenager jerika bolen sufferedfrom spinal muscular atrophy type ii. she spent most of her time in a wheelchair. video stories mention that she could moveher head a little bit. she could move her hands a little bit, butfor the most part couldn’t move. this was an incurable condition, progressivelywas getting worse. and she chose to enter hospice and wantedto end her life, and she did.
what is your overall reaction to this case? >>carrie ann: well i think one of the distinctionsto make to begin with is she did not use a ventilator. she used a bipap, which is a non- invasivebreathing support. it’s very similar to what people with sleepapnea use. hundreds of thousands of people around thecountry use cpap and bipap machines to help with sleep apnea, which is the same machinethat she used. so simply removing that device is likelynot what caused her death, given the amount of time it took for her to pass.
but— >>joy: yeah, i’m sorry about that. but i was just recounting from the news reportsthat were calling it a ventilator, but you’re saying it was a cpap type machine? >>carrie ann: right. it’s a bipap, so it’s a bi-level breathingsupport. it’s a support, absolutely, but it doesnot do the breathing for her. so i, for example, am a person who uses aventilator, so if my ventilator was turned off i’d be dead within an hour.
>>joy: oh, okay. yeah because she did enter hospice in, i don’tknow, at the end of – in the summer. and she didn't pass away until late september,so it was not imminent, that’s for sure. >>carrie ann: the reports that i saw had eighteendays, so what that indicated usually is that they withheld nutrition and water from her,and she probably starved to death under sedation. >>joy: yeah. so what is your feeling about this? what is your reaction to this? >>carrie ann: well i think it was in directviolation of controlling wisconsin law to
begin with. controlling law in wisconsin states that childrendo not have the ability to make the decision to withdraw medical care, and neither do theirparents, in the absence of a child being in a persistent vegetative state, which withjerika it was not. and how has the disabled community in generalreacted to her decision? >>carrie ann: in large, i think almost universally,with great concern about it. there are some folks who believe it was herdecision, but the majority of the folks and certainly every disability rights organizationwho took a position on the issue was opposed to this, partly because of the precedent itset, partly because this was a teenager who
clearly had some indications that her thinkingwasn’t very mature. this was a child who, a few months beforeher death, was posting on facebook about her beanie babies collection and wanting morebeanie babies for her collection. but also had some significant signs of disorderedthought when she was describing her own condition and her wishes to die. um, what do you mean, for example? >>carrie ann: in one interview, and this isan actual televised interview, so you have her own words, she said she first began thinkingof dying after her first surgery, when she was eight years old.
and then another comment she made was that shenever liked herself until she decided to kill herself. so those are really problems. and when we see those types of thoughts inother adolescents, which is something — i i work in child welfare— we see teenagers who have these kinds of thoughts,but a teenager who doesn't have a disability receives intensive suicide prevention intervention,and this young woman did not. jerika did not, which is really what the tragedyis here. because of her disability, and only becauseof her disability, she got different treatment, and that’s discrimination.
>>joy: she also did garner worldwide attentionupon an event that was held prior to her entering hospice and stopping the use of the assistin her breathing. she had a prom. she wanted to go to prom, so they had a speciallast dance event that the entire community of appleton and surrounding areas seem to have turned out for. and it seemed as though there was a greatdeal of support for her. and her decision did have, it appeared, herfamily’s blessing. does that make a difference? >>carrie ann: well i think it certainly hadher mother’s blessing.
what is notably absent from any of the mediacoverage was her father or her father’s family. so that is something that should be noted isthat there was never any mention in any of the media reports about her father. my understanding is that he did not supportthe decision. >>joy: um, but, we did also see videos ofher describing how she could speak but for the most part could only move her head a littlebit and her hands a little bit. otherwise, she was immobile, because of thisspinal muscular atrophy type ii, or sma. and we understand that, at least i read, thatthat is incurable and can be progressive.
>>carrie ann: absolutely, but there are thousandsand thousands of us who have progressive neuromuscular diseases that are not suicidal. most of us have – when studies are doneon people with severe disabilities like this, the medical establishment often and non-disabledpeople often rate our quality of life as very poor, because they look at us, and i’m speakingas a person with a severe neuromuscular disease myself. i’m also a quadriplegic as a result. they look at us and think that our qualityof life must be very poor, but that’s in fact not true.
of course there are some people who rate theirquality of life poor. some people rate their quality of life absolutelyfabulous. and most people are somewhere in the middle. and the numbers really line up absolutelyon par with the rest of the population. people with spinal muscular atrophy tend tobe quite intellectually bright so this young woman really had a bright future in frontof her. she should have gone to her high school promas a junior or senior in high school. she should have gone to college. she should have had a career and afamily.
this is something that people with spinalmuscular atrophy type ii do day-in and day-out. people are doctors, they’re lawyers, they’retherapists, they’re teachers, they're professors. people are very accomplished in theirprofessional field with this exact same condition, frankly with a lot more severity than thisyoung woman had. >>joy: we’re going to take a short breakand then we will take your calls with your questions, your reactions, your views to thecase involving the appleton teenager, fourteen year old jerika bolen, who passed away inlate september after entering hospice saying that she wanted to die. i’m joy cardin.
this is the ideas network. [break deleted] >>joy: i’m joy cardin. this is the ideas network of wisconsin publicradio. we’re talking about whether or not a childwith a disability has the right to choose to die. our conversation is prompted by the wisconsinteenager, the appleton teenager jerika bolen, who spent most of her time in a wheelchair. she suffered from spinal muscular atrophytype ii.
she decided to end treatment. she died in late september, spurring a newround of the right-to-die debate. our guest is talking about the rights of patients in disability cases like this. and we are welcoming your thoughts, questions and reactions. 1-800-642-1234 or send an email to talk@wpr.org. carrie ann lucas is a child welfare law specialistand the founder and executive director of the organization disabled patients rights,or parents rights. let’s go to our first caller, joelle in menasha. hi, joelle.
>>joelle: hi. >>joy: good morning. what do you think, joelle? >>joelle: i think that every human being isan individual and every experience is different. i understand that some people, you know, whetherable-bodied or not, when they have to live with a lot of extra care, like ventilators,or breathing stuff, aren’t happy or okay with it and i think that they do have a rightover their bodies if they’re able to go to therapy and still make this decision, ithink that people should be more supportive, because we’re not living in their skin andwe’re not experiencing what they’re experiencing.
and so yes, i believe like, you know, everybody has theright to that, to die with dignity if that’s what they choose. >>joy: and even a teenager, joelle? >>joelle: i think if she went to therapy andsomebody thought she was of sound mind and body to make that decision, i think so. because if she was suffering, if she feltlike she was suffering, i don’t think that it’s fair to force someone to be somewherewhere they don’t want to be. >>joy: carrie ann? >>carrie ann: i think the issue here is we’redealing with an adolescent who has the brain
of an adolescent who is making adolescentdecisions. and we know that the brain of an adolescentis not fully developed in order to make mature decisions. they really only think ahead a week or two, and that’sthe worldview that teenagers have. and when you look through that lens, and theproblem here is it comes down to discrimination. if we’re going to let children make thesedecisions, then we should be able to let children make these decisions regardless of disability. so we have to then be willing to say thatthe depressed fourteen year old who broke up with her boyfriend who wants to die shouldget to die as well. otherwise this is disability discrimination,because some children get intensive suicide
prevention and other children don’t. and it’s based only on disability, and that’sdiscrimination. >>joy: and, carrie ann, if jerika were theage of eighteen, then you wouldn’t have any issue with this? >>carrie ann: i would still have concerns. on the other hand, the supreme court is clearthat adults have the decision, have the ability to withdraw treatment. i think in this case i think it would have been muchless likely that she would have made this decision as an adult.
just because of the way that she talked about herbody, talked about the way that she thought – she only liked herself when she decided todie. things like that are really signs of some disorderedthinking. had she gotten intensive therapy, had shegotten the type of mental health treatment that we would provide to a non-disabledteenager who was asking to die in this way. i doubt she would’ve been there at eighteen. she would have had a prom. she would have gone to high school. this young woman never even went to high school.
she would have graduated from high school and beenlooking forward to college. as a parent, i have a teenager myself. i have a seventeen year old who is also aquadriplegic, who has a different disability, but at fourteen was in severe pain, who wanted to die. but the response of a parent was to ensure that we did everything we could to address her pain issues which were some of the exactsame surgeries that jerika has had, and were willing were willing to do any intervention necessary to get herpain under control, but also intensive psychotherapy and mental health treatment to ensure thatshe didn’t continue to have that worldview. now she is a happy almost eighteen yearold in her senior year of high school, and looking
forward to work in her adult life. >>joy: in a video from the appleton post crescent,jerika bolen described her pain as a seven on her best days. i mean, i can’t imagine that there hadn’t beensteps to try to control that pain, and yet it still was seven on her best days. >>carrie ann: there are certainly some concernswith how her pain was being controlled based on her own reports, based on what she said. that she was not taking her medicationuntil her pain was at least an 8 out of 10. that’s a concern.
anybody who has chronic pain knows that what youdo is you take medication early to treat the pain and get ahead of the pain. if she was being allowed to wait until herpain was at that level, that indicates: one, she doesn't have a lot of maturity to make decisionsaround her own body, because she is not following standard medical recommendations, or two,she wasn’t getting good pain care. and having cared for a child with chronicsevere pain, i know what the protocols are, even in adolescents. and as an adult with chronic pain, i knowwhat the recommendations are for adults. and this young woman was not having pain managedin a good way in that way, and that’s a
concern. because had her pain been better managed,she might not have been in this position. so i’m not sure that she got to good specialists,and that’s a problem. there are specialists, and she may havehad to travel to get to them. but we know that she traveled because therewere news reports about her traveling and visiting relatives in other states. so she could have gone to places likechicago, where i believe her father lives, and seen specialists there who really do specializein this condition. and it’s not clear that she did get thathelp.
>>joy: mark on facebook says, “i totally supporther (jerika). why force someone with a definite fatal prognosisto endure suffering we can’t imagine for our own comfort. we often forget how mature and intelligentteenagers can be, especially when it comes to their autonomy and when they’ve gonethrough things like this.†that brings up the word “suffering†again,our caller also said when someone is “sufferingâ€, they should have the right to do this. i mean, you mention that if we allow this, in thesituation of jerika bolen to choose to die, then we should allow the fourteen year oldwho broke up with her boyfriend the right
to choose to die. there not exactly the same thing, though. that girlfriend isn’t in pain, isn’t practicallyimmobile. what about that? >>carrie ann: i think it's a misperceptionof our lives as disabled people, and those of us in the disability community are livingwith the exact same or very similar conditions saying, “this is a problem.†this is a problem with her perception on life,because the fact the somebody has a disability does not mean they’re suffering.
the fact that someone has paralysis does notmean they’re suffering. and that’s a very ableist point of viewfrom non-disabled people to say, “oh you must be suffering, because you have a disability,â€when that’s not true and she did not need to be suffering. and so we talked about her pain control. but it’s also a misperception to say well, just because somebody has a disability they’re more mature, and that’s not accurateeither. teenagers are still teenagers, whether ornot they have a disability. they might be more experienced with particularmedical conditions, but it doesn’t mean
that the child is more mature just becausethey have a disability. that’s a common misperception of disabledchildren, but it’s absolutely a misperception. this is a little girl who a few months beforeher death was collecting beanie babies and posting on facebook about her beanie babycollection. that’s not an overly mature, that’s a fourteen-year-old,that’s a middle-schooler. and frankly that’s a very typical middle-schooler. so i think it’s enforcing this idea that“oh it’s okay for disabled children to die†when it’s really not. we’re talking about a death of a childsimply because she had a disability.
>>joy: so what actions do you think should betaken when a teenager with a disability wants to make this decision to stop treatment andto die? >>carrie ann: i think, first of all, thatit should not be allowed to happen. that’s clearly what wisconsin law says, is that should not be allowed to happen, andif the parent persists in allowing that to happen, then there has to be state interventionjust like there would be for any other child who’s experiencing medical neglect, and that's something thestate does step in and address on a regular basis. that is the point of the child welfare system. doesn’t mean the kid goes to foster care,but it means that there needs to be another
set of eyes looking at the situation. she should have the right to have legal counseland have a guardian ad litem appointed to represent her best interests. she should have the right, her mother should have due process rightsin front of a court. but ultimately it could be up to a judge ifsomebody is not making good decisions on behalf of their child, and acting outside the law,which is what happened here. >>joy: we are talking with carrie ann lucas,a child welfare law specialist, founder and executive director of the organization disabledparents rights, about whether a disabled child
has the right to choose to die. she says that wisconsin law says no, and she says thatmost disabled rights groups are concerned over the case involving the fourteen-year-oldwisconsin teenager, jerika bolen, who was suffering from spinal muscular atrophy type ii whodecided to end treatment and who died in late september. >>joy: back to our conversationabout a child with disabilities and whether or not that child has the right to die, or to chooseto die. >>joy: this is the ideas network of wisconsinpublic radio. we are talking with carrie ann lucas, who is a childwelfare law specialist, and the founder and executive
director of the organized disabled parentsrights group, and we are welcoming your thoughts and questions and reactions to the death of adisabled appleton teenager. we are talking about this case involving afourteen-year-old appleton teenager who decided to end treatment and who passed away in lateseptember. talking about the national reactionto that from disability rights groups and medical ethicists, and we’re wondering whatyou think and what questions you have. do you think that fourteen-year-old jerikabolen, who suffered from spinal muscular atrophy type ii and spent most of her time in a wheelchair, should have been able to choose to enter hospice, and choose to end treatment,and end her life?
let’s go to jeremy in racine next . hi jeremy. >>jeremy: hi, thank you for taking the call. i have a question. if the state intervened, what would the statehave done differently than what was already being done for the child and her doctor and her mother. from what i understand, her mother was a nurse. so she was in the medical field, so it’s justone of those things. what would the state have done?
and the other question i have. where is the line drawn between an individual’sright to live the life they want to and where the state has the right to start intervening. it’s kind of like mother-knows-best typething. we don’t trust you that you know what’s bestfor you so we’re going to step in and decide for you. it’s a very slippery slope. and where does it end? and that’s it.
i’ll take my answer off the air. >>carrie ann: well i think, on a couple ofissues, had the state intervened. first of all, her father would have been notified. hewould have had an opportunity to participate in any decisions. so that’s something that always happenswhen a child welfare case opens is that all the parents get to be involved. so, both parents for each child, if there’smultiple children on a case. the state could have been sure they she hadgotten appropriate psychiatric care. the state could have ensured she was getting appropriate medical care, getting to other specialists, if need be,
getting second or third opinions ifneed be. those are all things a court could order toensure that happened. and a court could order and say, “no, shecan’t enter hospiceâ€. those are things the court could do. we absolutely did not advocate that this child shouldbe removed from her mother’s care because it did appear, other than signing consentfor her to end her life, the mother was providing otherwise good care. but those are things the state could havedone. it is absolutely a slippery slope.
and i would argue it goes in the oppositedirection, because we are seeing the slippery slope. before, it’s always been only adults could make this decision. now in this case, the state of wisconsin alloweda child to make this decision, something that’s not been allowed beforein this type of circumstance, where a child could affirmatively remove treatment, a childwho was not dying. and this is not a condition that would haveresulted in death for decades. people with spinal muscular atrophy type iilive into late adulthood at a minimum. some people live into their sixties and seventiesand beyond, but most people live into at least
late adulthood. so this is not something where she was imminentlydying. this was not a child who was facing death. so, given that circumstance, it’s reallyproblematic. and it certainly sends a message to otherchildren, who – being a middle-schooler is a difficult timein any middle schooler's life. it’s horrible. being fourteen is awful. it’s awful for almost everybody, and ifit wasn't awful, it was generally – those are the people who were
making it awful for the others. so this is not a time where we want childrento be making life and death decisions, because their point of view is not good. we know that kids this age really really struggle. they struggle because their hormones are changing. their bodies are changing. their brain is developing and changing. and they’re really learning to navigatethe world with some more autonomy. but also having that safety net of havingfamily and community around them.
imagine what would have happened if this communityin appleton, instead of cheering on this girl’s death, had said, “no, we want you to live.†odds are the family would not have raisedthirty-six thousand dollars had they said we need help to help our daughter live. it only happened because there was a pitifulstory of a child wanting to die, wanting her last death, a child who was not near death. >>joy: why do you suppose the state did notstep in, if this is clearly against state law? >>carrie ann: i don’t know that it’s clearthat they didn’t try.
and that’s something we don’t know. child welfare cases are confidential, butmy understanding is the family went to another county to enter hospice, and that may havebeen an attempt to evade child protection. i don’t know. certainly i have heard stories from familymembers who said that was a concern on their part. i have heard from family members that theybelieved child welfare was intervening, and so that they were looking forward to having that happen, and being able to have their input that way.
so, it’s possible the local county triedto intervene, but if they crossed county lines, there would need to be a new referral in the newcounty, in order to initiate actions in many states. >>joy: let me have you respond to whitneyon facebook who says, “a person choosing to die doesn’t devalue the life of disabledpeople. if we want to value the lives of disabledpeople, we need to recognize their right to self-determination.†what’s your response to that? >>carrie ann: people have the right to self-determination,the issue is, is we don’t let other children
die. any other child that didn't have a disability would not be allowed.but for her disability, she was allowed to enter hospice and have food and hydrationwithheld for eighteen days to cause her death. we would not allow that to happen to any otherchild. and it’s only because she had a disabilitythat it’s somehow acceptable. and i go back to the issue of the notion thatif it’s okay for people to have autonomy, then we have to be okay with having the childwho is suicidal because she broke up with her boyfriend, whose pain in that moment is also very real andvery excruciating to that child, we have to be okay with that decision.
and i don’t think we are. if we are, then society needs to make that decision as a whole. either it's okay for everybody or it's notokay. it’s either one or the other. but we should not be saying it’s okay fora disabled teenager to die, because people who don’t have disabilities have an imagination of whatquality of life should be like for a disabled person, and that is poor. because they can’t imagine in their ownheads what it would be like to live with a disability, when in fact those of us living witha disability, with the same disability
are telling you, no, it’s really notbad. there’s something else going on here becausewe have that lived experience. we know that. we are the experts in this. >>joy: i want to thank you carrie ann forbeing with us. carrie ann lucas is a child welfare law specialist,founder and executive director of the organization disabled parents rights.
