#but I also recognize that her emotional immaturity place a significant role here

[standingontheoverpassscreaming]

Worried I’m a bit in the weeds with this and as a human service worker for disabled ppl I need perspective, preferably from disabled/chronically ill folk.

a close friend of mine has had health complaints as long as I have known her. initially, it was an unconfirmed diagnosis of endometriosis. a constantly under diagnosed condition in AFAB people. affected her in a myriad of ways. despite constant complaints- to the point of it and her cats dominating our conversations like literally would just call to talk about her back pain and her cats playing and nothing else- and despite leaving multiple jobs while citing chronic pain as the reason, took her years to see a doctor. And then another year or so when the doctor blew her off like I warned her they would. which is discouraging, I know, but I gave her the statistics and discussed medical self advocacy in depth repeatedly every time she called to gripe and used shitty doctors as her reason for inaction. I actually ended up ghosting her for like a year because I couldn’t handle the constant calls that ignored the fact that I had a life and experiences of my own while repeating the same shit, often verbatim, and also overly in depth, overly explained.

We also talked about her mental health, coping with trauma, falling into and working on recovery from addiction from poor mental health. She booked what? One appointment? With the local sliding scale psych office where she said the meds made her nauseous then kept “forgetting to book again”

when she wormed her way back in, she was back at work and had finally, finally, pursued more medical attention. she’d had a colonoscopy and a gall bladder removal which apparently did nothing to help her issue but did exacerbate her IBS. and she’d apparently been fighting a constant battle against kidney stones that no one would do anything about apparently and it made her back pain worse… or caused it idk? for all the repetitive, drawn out, over explanations, I’m still not sure which. but she recently quit this job, which was night shift at a gym, complaining that they expected her to do more cleaning than day shift which exacerbated her pain. okay cool, desk job time right? She though so too until she decided that she misses bartending. And now she’s back to the calls. The long calls where she doesn’t even ask what I’m doing despite it being the middle of my fucking work day to tell me about how she’s gotta piss in a jug for testing. And how she’s gonna try to bartend again. Even though I pointed out that there’s a lot more on your feet and lifting heavy shit with bartending than the night shift gym gig where you had to greet 5 people, sweep up, then sit and read behind the counter for 8 hours. Also reminded her about the jobs that were sedentary that she had specifically asked me to look for. But more long winded explanations and yeah no she quit bartending bc of the pain but mostly bc of management.

Let’s not forget a few nights ago when I pointed out AGAIN that she was working herself up into anxiety and doing the anxious over explainer shit AGAIN and recommended therapy AFUCKINGGAIN and all the sudden her complaints about her mental health disappeared bc actually she likes her anxious thought processes and actually she thinks she’d more anxious if she could slow down her thoughts and aCtUaLlY she doesn’t want to heal up that anxiety

And the thing is that I believe her. She does experience chronic pain. She does deal with health concerns. Her mental health is subpar.

But I don’t know where the line is and I can’t keep having her ignore me as a person and use me as an endless dispenser of advice she refuses to take despite asking for it. I can’t be the ear that bends to all her complaints while she literally ignores what’s going on in my life. And I mean, I’ve dealt with chronic hip and knee pain for like a decade now, but I don’t call and wax poetic, I went to professionals until I got at least enough help to reduce flare up frequency and severity. I don’t use my cptsd, history of manic depression, and (now! because guess who actually did and is doing the therapy thing!) history of anxiety as an excuse. And even when I was in the throes of it, I didn’t wreck my life about it then use these issues as an excuse for it to those who loved me.

I can’t stay in this fucking cycle anymore because it sucks so bad to watch her take little steps forward then giant steps back. And it sucks even worse to have to do constant emotional labor about it.

And I know I’m pissed off and tired but what I need to know is am I being fucking ableist? Because I have dedicated my career to disability services and advocacy and I know it’s not the same when it’s personal like this, but I use what I’ve learned to try to help her but she seems to ignore it so she can call and tell me the exact same shit on a too-long phone call the next week

[studyingbymylonesome]

Should minors have a say in their treatment?

In Western medicine, a central component of respecting a person’s ability to make decisions governing what happens to herself is ensuring that she is provided with sufficient relevant information to make a rational choice. For patients who lack the cognitive capacity to do so because of either inborn or acquired deficits or because of youth, the extent to which they can participate in medical decisions is variable. Minors present a unique challenge, as their ability to understand and process information usually increases with age. The case presented here poses special problems because of the parents’ desire to shield their child from certain information deemed important by his physicians. I consider whether minors, particularly older ones, have a right to know that supersedes their parents’ wishes.

Commentary

Our general understanding of informed consent, based upon the conviction that moral agents have an (almost) unfettered right to control what happens to their bodies, demands that for patients to exercise this power they must have adequate relevant information to make choices they deem appropriate [1]. In order to perform this function adequately, persons must have sufficient cognitive function to both understand and appreciate the potential benefits and harms associated with the proposed intervention and to incorporate this knowledge and their values into a decision. The kind and quantity of information provided can vary, but broadly speaking it must be both satisfactory and materially pertinent such that patients can make an informed choice. For children, the capacity to engage in informed decision making is a gradually acquired capability, and different young people exhibit varying degrees of ability to make informed decisions as they age. The acquisition of the intellectual aptitude to engage in acceptable decision making of this sort correlates with the development of those areas of the brain associated with complex reasoning and forethought, a process that is not complete until the early twenties [2, 3]. Older teenagers and young adults appear to have similar abilities in this domain [4].

At least 14 states recognize the idiosyncratic nature of health care decision making by having so-called “mature minor” laws that can empower certain children, with demonstrable evidence of pertinent faculties (e.g., an understanding of their medical condition and the potential benefits and harms of the proposed treatment) to exercise this authority for themselves [5]. Different professionals—for example, judges or social workers, depending upon the jurisdiction—may be authorized to determine whether a child meets the standard to qualify as an autonomous medical decision maker. In those states in which they are mandated by law to ascertain the case-specific ability of the child, the statutes often specify that the patient must simply meet the “informed consent standard” [5]. In the absence of a court-ordered declaration of emancipation or other mechanism to warrant decisional autonomy—and therefore to be entitled to know all clinically pertinent information associated with the recommended treatment—minors must bend to the wishes of their authorized surrogates, usually their parent(s). While adolescents may be arguably unable to appreciate all of the benefits and burdens of a proposed course of action, they certainly have some appreciation, and engaging them in the decision-making process may be beneficial, although the data to support this are scant [6, 7]. Nevertheless, physicians faced with the situation illustrated by this case can be torn between their beliefs that the child has a “right” to know about a probable side effect that could profoundly affect him in his adult life—and that could be mitigated by an anticipatory intervention such as sperm cryopreservation—and the desire of his parents to “protect” him. While the need for initiating treatment may be pressing, as in this case, it is likely that the patient could be offered the opportunity to produce a semen sample if his parents were willing to seriously consider this as an option.

Making Decisions for Children

The sort of problem raised by this case is pervasive throughout the world of surrogate decision making on behalf of patients who lack capacity, either because of age (children) or cognitive dysfunction, such as that associated with dementia, mental illness, and the like. While few would argue against the reasonableness of respecting surrogates’ discretion in withholding potentially distracting, frightening, or distressing information from those whose intellectual impairment or immaturity is profound (for example, people with advanced Alzheimer’s or five-year-old children), the issue becomes more complicated when the patients clearly have the capability to at least partially understand and appreciate what they have been told and hence should be able to participate to a limited extent in the decision-making (i.e., consent) process. It is often stated by surrogates that they wish to spare their charges the anguish or worry that they might experience when faced with potentially (or imagined-to-be) frightening information [8-11], but it is unclear if these concerns are truly warranted (meaning that children may not be harmed by knowledge of the illness). Unfortunately, many encounters of this type take place with specialists who might not know the patient or her parents all that well and hence may be unable to effectively argue against parents’ refusal to permit the child to participate in discussions about medical care. Nevertheless, it is widely understood and accepted that the preferred model for effective and ethically justifiable medical decision making for both adults and children is one that embraces shared responsibility, involving the parents and child (to the extent she can or wishes to be involved) in a two-way conversation, which can be challenging at times given the differences in family dynamics, the emotional tension of the situation, and so on [7, 12, 13].

Of course, if Adam and his parents lived in a state that permitted adolescents judged to be sufficiently mature to make their own health care decisions (either some or all), then this could complicate matters, especially if he and his parents and his physician were at odds about the appropriate content of and mechanism for delivering important information. If his oncologist believed that it was vital for Adam to know about the potential for infertility and his parents remained adamantly opposed to his knowing, andhe met the standards for informed consent (however they might be applied and interpreted in his case and jurisdiction), then he could presumably override his parents’ objections. The potential repercussions of doing so could (at a minimum) erode or even rupture trust in this nascent patient-clinician relationship that could ultimately be fatal.

It is also worth noting that many seemingly irrational decisions made by surrogates and patients can stem from misinformation or simply lack of knowledge when a calm, informed discussion could allay their fears and set to rest misconceptions or misunderstanding [14]. This approach might not always work, however. As the ongoing challenge of parents who refuse to vaccinate their children attests, some people might be immune to this form of rational argument [15, 16]. Moreover, the increasing availability and accessibility of unfiltered and unvetted information obtained from sources on the internet—including websites, blogs, social media networks, and the like—can radically affect the ability of physicians to counter preformed and deeply held beliefs with more reliable and trustworthy data [17-19].

Nevertheless, it is the physician’s ethical (and legal) duty to ensure that the responsible consent-granting parties have all the relevant and true information—to the extent possible—needed to make an informed decision [1]. In this case, this would be the parents; the degree to which Adam would be involved and the power granted him to determine what he knows and what happens would be dependent upon his parents’ discretionary authority or the state, if they live in a state with a mature minor statute. One final detail is worth noting with respect to legally recognized mature minors. Like other authorized decision makers, minors have a legal right to delegate this prerogative to others (such as their family) if they do not wish to take part in all or some of the decisions that might need to be made [1]. Indeed, if personal autonomy is to have true meaning, autonomous individuals (including mature minors) must be able to grant to others the power to make decisions for them as one instance of an informed choice, although this choice might perhaps be better labelled as a form of shared decision making [20].

A recent report by the Committee on Bioethics of the American Academy of Pediatrics discusses the goals of surrogate decision making:

Surrogate decision-making by parents or guardians for pediatric patients should seek to maximize benefits for the child by balancing health care needs with social and emotional needs within the context of overall family goals, religious and cultural beliefs, and values…. Physicians have both a moral obligation and a legal responsibility to question and, if necessary, to contest both the surrogate’s and the patient’s medical decisions if they put the patient at significant risk of serious harm [21].

This guidance acknowledges that, in practice, standards of surrogate decision making, whether they are for adults with diminished capacity or for children, involve a complex integration of best interests, family input, and minimizing risk of harm. This is especially the case for pediatric patients who exist, developmentally and cognitively, on a continuum and whose place and role in their family can be constantly changing with time and situation. Some have suggested that a plausible litmus test for the adequacy of a surrogate decision—the bare minimum for what physicians should respect and accept—is what has been termed the “not unreasonable standard,” based in large part on the kinds of reasons given by the surrogates in support of their choices [22]. Reasons for decisions that could lead to significant harm to the person for whom the decisions are being made must be judged to be sufficiently rational, such that others could not reasonably object [23].

Who is Right in This Case?

Are the parents correct in this case or in others in which parents wish to shield their child from certain information that they believe will be harmful? In my clinical experience caring for children with cancer, it’s not unusual for parents to wish for or ask physicians to refrain from telling the patient her diagnosis. In my and others’ views, this tendency arises from parents’ perhaps mistaken belief that a cancer diagnosis means their child will die and from a belief that their child should be spared the trauma of having the news of a fatal diagnosis revealed [24-26]. In the case, Adam’s parents are, probably, similarly motivated by a desire to protect their child from information they believe could be psychologically damaging. However, if Adam’s parents’ motivation to protect him comes from their belief that he will die, this belief is not based in fact. Indeed, for Ewing sarcoma—Adam’s diagnosis—the five-year event-free survival is up to 73 percent [27]. Generally speaking, pediatric clinicians, others caring for those lacking decision-making capacity, and courts have traditionally given great deference to the expressed will of the surrogates unless there is good reason to believe that their decisions could place the patient at risk of imminent harm [28]. However, the meaning of harm has usually been interpreted as “physical,” especially in cases such as Adam’s [28]. For example, if his parents had refused to give consent for his treatment, it is likely Adam’s physicians would have pursued legal action to compel his therapy, and they likely would have been successful due to the risk of significant, life-altering—and, in Adam’s case, probably life-ending—harm. But it is doubtful they could make a plausibly compelling argument that, based upon his current statements about his wishes to have a large family, Adam might suffer psychological harm of an incalculable degree sometime in the future, such that this harm would be sufficiently credible to override the parents’ authority [29].

There are at least three kinds of potential—and avoidable—related harms that could occur in this case, and while they might be identifiable, their future impact is difficult to quantify. The first is the possibility that Adam would suffer from knowing that he could have had the opportunity to take steps to cryopreserve semen and hence retain a chance (importantly, not a guarantee) to be the biological father of children at some unspecified later time. The second is damage that could be caused by the knowledge that his views and beliefs about what was important to him (the nascent desire to have a number of children as an adult) were ignored or considered insignificant by both his parents and his physician (assuming the latter abided by the demands of the parents to conceal pertinent information from Adam). Finally, Adam will be rendered infertile from physical destruction of spermatogonia due to alkylating agents [30], and, while the biological effects will be anatomic, any negative aftermath will almost undoubtedly be psychological.

Deliberations about this case depend on how we view and attempt to answer two fundamental questions, assuming that Adam does not live in a state where mature minors may be empowered to make their own health care decisions (and that he would be considered capable of doing so). First, is the physician required to obey the wishes of Adam’s parents concerning what happens to their son no matter what? Of course that cannot be true, as I have indicated above. However, distinguishing between permissible deviations from medical advice on behalf of others and impermissible deviations is difficult. Technically, Adam’s parents’ duty within the framework of medical decision making is to act in his best interests—which can be construed as those interests that all children share, such as continued life, and those that may be unique to him, such that only they can define, express, and act upon those interests to protect him from harm. Second, are the putative psychological harms that could occur should Adam not know about his probable infertility and the means to avoid it (sperm-banking) both sufficiently determinable (perhaps as a quantifiable risk) and predictively severe for the physician to attempt to refuse to accept Adam’s parents’ decision? There are good reasons to believe that effective therapy for Adam’s disease will render him infertile. However, future iatrogenic harms that could result from treatments’ toxicity are considerably less determinable and hence hypothetical. While it is true that his physician believes he should know about his future infertility, the subjective assessment of hypothetical information on which this belief is based would seem to weigh in favor of the parents’ authority. It is also likely that the law would defer to Adam’s parents’ discretionary authority to keep information from Adam that would seem to fall within their purview to guide and control many aspects of his life.

Conclusion

While I agree that it would be better if Adam knew about this side effect that could affect his life in profound, yet unknown ways, it seems that in this case Dr. K must defer—albeit reluctantly—to Adam’s parents’ wishes [31]. Nevertheless, it is important that Dr. K convey the reasons why he believes it’s important for Adam to know that the treatment almost certainly causes infertility, although I am pessimistic about his chances of altering the parents’ views (based upon my personal and my colleagues’ clinical experience as well as the lack of consensus on how to alter parental views on childhood vaccinations [32]). The question of whether Adam has a right to know about his condition and the question of how to consider, from a moral point of view, the iatrogenic harms of its treatment are complex ones. Legally, the answer to the question of whether Adam has a right to know is “no.” Due to his status as a minor, he is not legally authorized to consent (although many institutions require assent of minors, especially for research participation [33]), and hence he is not entitled to be informed of the benefits and burdens of the proposed therapy as his surrogates (i.e., his parents) are. And it would be unwise to cast his right—legal or moral—in terms of a multitude of elaborated human rights, only some of which inhere in persons who lack decision-making capacity (such as Adam) [34], as that would potentially distort or even trivialize the moral power that we have accorded rights by amplifying their breadth and scope. We are thus left with a situation that, like so much in health care, is messy and not entirely satisfactory, at least as Adam’s physician might view it. It is conceivable that his parents might later regret their decision to withhold information from him, but that, too, like our projections about potential harm to his psychological state, must remain speculative. The bottom line is that, in this situation, the parents’ wishes must prevail.

As unsettling to her as it undoubtedly would be, this conclusion also addresses the problem of what the student, Jenny, should do. As torn as she might be, an ethical and legal analysis of this case supports that she should not disclose anything further to Adam. That being said, it would also be incumbent upon the attending physician to discuss the troubling features of this situation and the reasons why he decided to defer to the wishes of the parents despite his (and her) misgivings. It is not uncommon that the most disturbing cases present the best opportunities for learning that clinical practice can be decidedly messy.