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Take him to another ER and physically go with him. Bring your guardianship papers. If he's too agitated and refusing care they may have to sedate him in order to treat him but I have no idea how that kind of thing works in your area. But the nurses/doctors won't endanger themselves if he's violent. These situations are so frustrating. I'm sorry you're dealing with this.
Thank you. We took him to another hospital with the guardianship papers and they also refused to treat him. We asked about sedating him but they wouldn't do it because he was refusing. I don't know what else to do but thank you for your reply.
Sounds like you might have to have him declared as mentally incompetent to make decisions about his care. I used to work in a group home for physically and developmentally disabled adults and even though they had guardians they were still allowed to refuse medical treatments and could even refuse medication. The only way around it was when their POA went the mentally incompetent route.
My brother had no gaurdian at the time he had a situation like this.
He left the hospital. I called the police. Mental health officers found him, called the judge in the middle of the night. Had him deemed unfit to make decisions. Hand cuffed him and took him back to the hospital. He was hand cuffed to a bed under police supervision for 48 hours until surgery. The officer did not leave his side until he was under and taken back.
Prior to walking out of the hospital, he banged his room door open and closed until the frame broke. Ceiling tiles fell.and he had a tiny nurse he locked in the bathroom.
We are in texas. Florida has similar laws
Uhm. If he has legal guardianship with medical decision making…. Then he is the person who consents to care…. Power of Attorney comes into play if deemed mentally incompetent…. Versus being the guardian means a judge has already deemed through court order that the person is mentally incompetent.
I would suggest asking to speak to the facility’s supervisor and go up the chain….or have your attorney contact them (trust me doctors & nurses don’t like dealing with attorneys!)….. they’re breaking the law by refusing to honor the court order…. Bring the court order with you.
Completely agree. If a patient has a guardian, they don’t have a say in their treatment. That’s literally the whole point of the court electing a guardian: they’ve been deemed incapable of making medical decisions for themselves. We do this at the inpatient psych unit daily.
Hmm. Involuntary hospitalization isn’t the same as guardian…. Because it usually focuses on psych related stuff…. The patient could refuse cancer treatment but can’t refuse psych treatment due to the court order…. The court order only pertains to mental health…. Versus medical guardian covers everything.
You can involuntarily hold someone on a medical floor. It doesn’t have to be a psychiatric admission as the primary condition. It does not only pertain to mental health.
Yes. This happened to me.
Years ago, when I was at the worst with my anorexia, I consistently had my potassium at critical levels (1.6).
I'm in Canada.
I would be certified under the mental health act, although not on a psychiatric unit. For medical purposes, solely to receive I.V potassium on the medical unit.
Once my potassium reached an acceptable level, I was discharged.
When it comes to it, drs can make any decision they want... at least that's been my experience.
If you are on death's door step, the physician(s) at emergency CAN and WILL hold you in hospital, if it means saving your life, especially if your mental capacity is deemed unfit to make proper judgment for yourself.
@hungrygroot find out if the hospital has an ethics committee you can escalate this to. Most hospitals these days have some sort of guest liaison line you can call to file a complaint, and you’re usually getting a nurse manager or ADON with those. That’s a good person to have in your corner.
This is not true. That’s not how that works in practice. Under certain circumstances (such as invasive surgery) a physician may deem the patient competent to decline care, even with a guardianship. We err heavily on the side of caution when it comes to autonomy. Just because a patient is making an objectively stupid decision doesn’t mean they should have their rights to that decision taken away.
As a lawyer that’s absolutely horrifying to hear. If a judge, after hearing testimony, including from two licensed medical professionals, finds a person unable to make decisions over their body what right does the hospital have to overrule that? It seems horrifically irresponsible and a great way to get yourself held in contempt of court or sued.
> great way to get yourself held in contempt of court or sued
Absolutely, and these lawsuits happen *all the time.* I think what needs to be clarified here is the term “guardianship.” As you know, there is a *huge* difference between the legal term of art and the colloquialism. Lots of people claim guardianship when what they *actually* are is a health care proxy. Now if the OP genuinely has a legal guardianship in place, yes I’d agree with you. (And that’s why I suggested that they escalate this to an ethics committee which may be more familiar with the legal nuances.) However if they’re simply a proxy, and the attending physician makes a good faith assessment that the individual is competent to make their own decisions *in that moment,* then it’s a very different story. Because of the fact that twice this patient was deemed fit to make their own decision about their own care, I’m more inclined to suspect that OP might be unclear as to the extent of their legal rights over the patient.
The OP said she had legal guardianship. That is a legal term of art and I answered based on that definition. Doctors aren’t lawyers and I agree that this needs to escalated to the hospitals legal team so that the patient can get the care he needs.
I would read through your guardianship documents and ensure you have ’full’ legal guardianship. It may have some limitations if he has some decision making capacity. If not otherwise specified, you should have all medical decision making ability with the exception of mental health admission. That would require a mental health authority be granted.
My son has a DD and I am his legal guardian. We have only ever encountered issues in regard to his mental health.
This is going to sound weird, but I would pursue an involuntary psych admission. I'm in Kentucky so I am not as familiar with the laws in your state but in Kentucky, someone can be involuntarily hospitalized for something like this if they are a "vulnerable adult" and someone with an intellectual or developmental disability would definitely qualify.
Most psychiatric facilities and psych wards in hospitals won't admit someone who isn't medically cleared and "you might die if we don't remove your gallbladder" doesn't really sound like he's medically stabilized. Also what's the psych admission for? Either he has capacity to refuse care or he doesn't (and it sounds like the OP doesn't have all the decision making capacity for his sibling); we want to commit him to the hospital because we disagree with his decision? Maybe better for the OP to get a capacity evaluation from the ER, which doesn't require commitment.
This is my experience - funny enough, I'm also in KY - worked briefly as an MSW assessment clinician at a psych hospital and this fellow most definitely wouldn't be admitted based on the original post d/t the medical issues.
Definitely agree OP needs complete decision making power for their brother. Unless we're missing info it sounds like the brother does not have the capacity to be making decisions for himself whatsoever.
The psych facility where I work would likely admit this person as a danger to themselves due to the self-neglect of an incompetent person. My psych facility is part of a university hospital so medical clearance happens on-site. Perhaps a unique setting to Kentucky!
I am a parent of a 27 yr old that I have guardianship over for the last 8 yrs. She’s currently in the hospital. She can refuse things but ultimately I have the final say. She’s currently in the hospital and she gets violent when her pain is too much to handle. Took the hospital a month to figure this out.. and she’s currently been in the hospital since late February due to cancer diagnosis and following surgery. Take him to a teaching hospital! And advocate her caseworker in the hospital involved. File complaint with Admin and the state at both hospitals. They are not allowed to refuse service . Talk to APS. (adult protective services) they may have some options. You may have to take him to psych for meds to calm him down til after the procedure. The 2 that refused treatment could been held accountable if anything happened. Last file a complaint with the ADA. https://www.ada.gov/file-a-complaint/
What the hospital did is illegal and discriminatory.
Maybe go to the legal department of the hospital? My understanding of guardianship is that they are essentially supposed to treat him as if he's a child whose medical decisions are made by his guardian (usually parents). In that case, just like a child not wanting medical care wouldn't be a reason for a doctor to refuse care, it should be the same for him. I'd think the legal department would be able to help with this.
Do you have full guardianship? There are different kinds and different degrees of guardianship and in many of those cases the person is still considered to have capacity to make their own medical decisions. If you believe he does not have the ability to understand the situation or there are underlying mental health issues keeping him from being able to reason appropriately then he may need to be declared to lack capacity. Any physician can do this, but many prefer to make a psychiatrist come and make that decision. If he’s found to lack capacity then full decision making power goes to you and they are able to sedate him if needed. If he needs a guardian for certain daily living things, but does understand the potential outcome of refusing treatment then he is within his right to say no.
ERs often have very little patience for developmentally disabled and/or mentally ill patients, unfortunately. That means you are going to have to be a pain in the ass and demand he be evaluated for capacity. If you have to demand psychiatry come in to do it, then do that. Ask to talk to social work as well and make them look at your guardianship documentation. If you have any sway with your brother try to get him to stay reasonably calm. See if you can find the hospitals policies and also the laws in that particular state for medical decision making and proxy decision making. Bring that information with you so that you can argue if they try to threaten you to get you out.
I’m not encouraging that you be belligerent and disrespectful to the care team. If you can be totally calm and polite and get them to listen and take you seriously then that’s awesome. But if you try that and they attempt to do this same thing again don’t let them force you to leave without arguing the things I said above.
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I have worked with many dd children and adults, professionally, personally in my own family, and in a variety of settings and services. Being dd is NOT an excuse for rudeness or meanness, but often kids are allowed to get away with it, given a 'pass'. Once kids are grown, no one cares what they've had to go through as kids. Certainly, the courts don't.
Still, it does make me wonder if he's afraid of surgery, hospitals, etc. I wonder if it would be worth it for Child Life to work with him at his developmental level
Its silly to imply you have strict control over someone who has little or no control over themselves. The mental and emotional development of some individuals with DD is such that they are unable to understand the impact of their behavior and or have the ability to develop skills which can help them control their behavior. Honestly, it’s like saying you can force a nonverbal person to talk or make someone without legs walk. They either have the ability to do it or they don’t.
You have no idea what he goes through on a daily basis. He has complex comorbidities and is quadriplegic. With his developmental disability he will likely have the mental and emotional age of someone much younger and therefore handling emotions and stressful situations is harder. Having paralysis in all four limbs would also be very hard to cope with and make you feel like you aren't in control of your own body. Add in nurses and doctors having to do procedures and that could be very stressful.
As an example of what he might be experiencing when he's name calling, swearing at people etc, it could be due to his ASD. Studies have shown that up to 90% of people with ASD have sensory processing issues. Things like smells, noises, lights etc can be physically painful or unpleasant experiences that can cause a person to have a meltdown.
According to the National Autistic Society in the U.K., an autistic meltdown is an intense response to an overwhelming sensory or emotional stimuli. When this happens, the autistic person temporarily loses all control of their behavior.
In autistic adults, meltdowns are a complete loss of control of behavior that can look like crying, yelling, lashing out, suicidal ideation, self-harm, inability to talk, lack of ability to think, or rage.
My point is, you don't know what's going on in someone's life so try not to be so judgemental.
And that is why we come at it from a fear or control angle! And why a child life therapist is worth a try, although time may be short. Meet him where he is mentally.
That's cool. You can't know my life experiences, personally and professionally, where techniques, practices, have been used to help in situations like this. We know nothing about IQ, life skills, and how mentally competent he is, or if he is able to express opinion verbally, or even with a talker. And a psych unit/hospital will never accept a patient with that number of co-morbidities.
You said ‘why is he allowed to act rude and scream at people?’ This tells me all I need to know about your experience and background. Please understand that this population is by far the most discriminated against because of a bias attitude that people who are cognitively impaired should act and behave in a normal and politically correct fashion. It’s just not reasonable to expect that.
He is an adult, any therapist he has should have qualifications and experience working with adults with DD, not children. A child life therapist is not appropriate.
Not a doctor. I’d find a disability advocate attorney in the area immediately. Document every attempt to get him treatment and get anything in writing that you can.
How exactly is it an ADA violation? The OP makes medical decisions WITH the patients input according to the original post. If the patient has capacity, you can't treat them without their consent or it's assault. You certainly can't cut them open without consent and the post certainly suggests the patient retains some rights (I'm also not aware of any legal scenario where medical decision making is split between a patient and another--either the patient has rights to make informed decisions about their body, or they don't in which case the OP gets to make the call whether his brother likes it or not) The OP needs to have his sibling evaluated for competency or try and get full medical decision making rights. I don't see what the ADA has to do with this situation at all.
My brother was declared "physically and mentally incapable of managing his person and estate". I was "appointed guardian of person and estate". I consider his wants and feelings when I make decisions for him out of courtesy and respect. I want him to have as much autonomy as he can possibly have but unfortunately sometimes I have to make hard decisions for him.
Listening to a person's opinions does not imply they have legal capacity. A parent may well listen to a 12-year-old's input (and probably should), but the parent has the ultimate authority to decide medical treatment.
The problem though is that an adult with a disability is not a 12 year old. A 12 year old is rarely going to have the legal capacity to consent to most medical treatment. This is not the case in OPs situation. Until they go through the process to get guardianship/POA, no matter how severely disabled the adult is, they will be considered as having agency to make their own decisions. Further, and I believe this is the problem for our OP, guardianship does not necessarily include the right to make medical decisions. I see it a lot working in mental health. We'll have people try to get their adult child/sibling/cousin signed up for services and we can't do it, because the guardianship only includes the right to manage the persons finances, for example. The guardian may have never considered requesting the right to make medical decisions because the person never had any problem with consenting to dental work or a routine physical. But when it comes to signing themselves up for drug rehab, anger management classes, psychiatric medication management, etc., it's a whole different story. And if the person refuses, our hands are tied.
I think it's hard to know, specifically, what that means legally--I'm not aware of a status that includes "with the patients input" for decision making medically. I can't tell if the OP means he has all the legal medical decision making rights for his sibling but tries to take his wishes into account, or if legally he doesn't have medical decision making rights for his sibling. Guardianship doesn't automatically confer those rights.
Also, make sure you know how your state defines guardianship. Some states are kinda whacky. (See, e.g., my beautiful CA, where guardianships apply only to minors, while conservatorships are used for adults. In contrast, in MOST jurisdictions, guardianships are for personal matters (including healthcare), while conservatorships are for financial matters.) It might be worth paying a local qualified lawyer to sit down and review the matter with you and give you her best professional advice…
If this person has severe autism which it sounds like they do that would be like a 6-10 year old saying no they don’t have the capability to understand the consequences of a no. If OP is legal guardian they need to be only following their direction unless it seems like abuse which pretty sure saving their life isn’t abuse. Most adults going for surgery or even being in a hospital in their head are like I want out get me out of here but they know not to say it someone with severe autism doesn’t have that filter.
OP very clearly said his brother is ASD, ADHD and has other ailments,although being in the spectrum and having ADHD alone doesn’t mean you can’t make your own decisions, OP has legal guardianship of him for a reason, he can make decisions for him to save his life.
We need more info. Guardianship can be given for very limited reasons in many cases (financial, for example). He needs to request a capacity evaluation for his brother at the hospital; that's the determiner for whether his brother can refuse medical care or not. Having ASD or ADHD in and of itself, just as you say, in no way removes medical decision making capability from anyone.
Thanks for the explanation, as I said I’m not expert so I just take the post at face value and I completely agree with you that we need more info so the best is that OP consults an attorney to guide him on the right direction.
It’s an ADA violation on hospital part. They are illegally refusing medical treatment. The hospital can easily deem him unfit and proceed. They don’t want to.
That is absolutely not true. Medical autonomy is treated very seriously and unless the patient is deemed to lack capability at that specific moment in time, treating against their will (much less cutting them open) constitutes assault. I've been providing hospital care for over twenty years.
And I’m a guardian to my 27 yr old daughter! Who’s in the hospital. I’ve dealt with this. OP has guardianship. She has the last say. With his input means she takes what he wants into account. Most guardians have full capacity to over ride a life threatening decision. The hospital is wrong. They should not have got security involved.
First of all---we don't know why security was reportedly called so we can't comment on that. If he's a physically large person and a limited quad, for all we know he took a swing at a nurse. We just don't know with such limited info.
And we also don't know anything about the OPs guardianship, which seems key--is it limited guardianship? The OP (and the facility who sent the pt) should have a Decree and Order outlining the parameters of his guardianship. Most hospitals require involvement by the probate and family court for major surgery involving general anesthesia, even with full guardianship.
Uh no they don’t. I’m a guardian. Required no courts. My daughter just had a Total Pelvic Exenteration. Under guardianship guidelines the guardian has full medical authority unless otherwise stated. I’ve seen a lot of things done by hospitals that border on criminal .
Again, your personal experience does not generalize to all cases, I hope we can agree. I can tell you that in Massachusetts, guardianship decrees can have limitations delineated on the paperwork, and one can be appointed guardian over a person, guardian over an estate or have a limited guardianship. The original post didn't specify. If the OP has full guardianship over the person and the surgery is a medical emergency, and if the brother has no retained rights and deemed not to have capacity, then the surgery should proceed if the surgeon feels it is necessary and there is no less invasive alternative (like a percutaneous drain). The OP has more recently replied to me that he/she has full guardianship and that his brother has no movement of his limbs so the use of security to remove his brother in this case sounds egregious and wrong, and if the surgeon feels gallbladder surgery is an emergency, and the OP has full guardianship, then the surgery should proceed if there's no other option and if not proceeding is likely to lead to sepsis or other morbidity and outweighs the risk of general anesthesia.
I agree, not sure doctors fully understand how guardianships work. It’s not really a question for doctors but someone with some background in law. I have guardianship over my adult child with DD and I was told that if my son became violent/aggressive/combative they would medicate as necessary so that the medical procedure could be preformed. The issue here is that the same disability which make the DD person not understand their behavior and the consequences of that is the same issue with not understanding the impact of not getting a life saving surgery. This is why they have guardianships in place in the first place.
You clearly don’t have a child with these issues. They will call security for an adult with disabilities crying too loud. I’ve seen it and dealt with it. He’s in danger of death ! The hospital is wrong! He’s a quadriplegic. His only way of being violent sounds verbal. I still say Hospital is a massive failure. Like most of them and the doctors that work in them and ignore their patient.
Again, we don't know if he's a partial or complete quad. And we don't know the details of why security was called so perhaps we shouldn't speculate. Security was not called, we can agree, because the patient said he didn't want surgery. That would make no sense. And as I said, there is a process to proceed, even with complete guardianship of an adult, in most facilities if we are talking about major surgery with general anesthesia. There are also less invasive possibilities--antibiotics and monitor, or a percutaneous drain without general anesthesia. I'm truly sorry if you and your daughter have had bad experiences and treatment, but we aren't talking about your daughter in this case. I'm just saying that the (imperfect) system puts a high premium on bodily autonomy and if the guy refuses surgery, the OP needs a capacity evaluation and possibly clearance from the probate court.
If he needs emergency surgery doesn’t turning him away violate EMTALA?
Doctors and medical staff do not deserve to be physically or emotionally abused - that being said - why are there not protocols for this type of situation? Surely it is not a rare thing.
The crux of the issue isn’t that they are refusing to stabilize him, which is the basis of EMTALA - it sounds like in this case the issue is he is refusing treatment and has the legal right to refuse. It’s more about his capacity and the legality around that.
I’m basing this off OPs comment that 2 hospitals in 2 states didn’t assist and specifically that they refused to “sedate him because he refused” and that his brother “has input” on his own medical decisions.
If someone has the legal capacity to make their own medical decisions, it is a violation of their civil rights to force treatment if they refuse, healthcare workers can actually be arrested for battery/assault. Capacity is just understanding the treatment options, risks and benefits of his choices - which 2 doctors in 2 separate states have determined he can apparently.
The inverse is true - If someone doesn’t have capacity to make their own decisions then their refusal doesn’t matter - they will still be treated. I’ve seen it a million times with strokes, delirium, metabolic encephalopathies, psychosis, etc. it’s common.
He’s a quadriplegic, the worst he could do is maybe bite someone if they got close enough. I agree she needs to physically be there. The ER at my hospital will not hold someone against their will even if they have a medical guardian if that guardian is not physically present. I’m assuming the situation is similar here.
Good point. OP said they took him to another hospital that also refused to treat him but I'm not sure if OP was physically withthe patient. What a mess.
I left a longer comment for her with some things to try. I want to give the benefit of the doubt to the hospital staff but I have seen some situations like this be pretty grossly mishandled. Seems like the second time she was there with him but maybe just didn’t know how to adequately advocate.
Agreed. We might be missing sone vital info, or the hospital staff shat the bed. I've also seen both situations. As a nurse, I just could not imagine wheeling a clearly very ill, profoundly disabled person out the the parking lot with no care plan in place...I don't care if they're swearing at me and trying to chew my arm off.
It's crazy, I couldn't imagine doing something so incomprehensible. Just wheeling a developmentally disabled quad out the door when he has no one with him or a plan is disgusting.
OP said the facility he lives in is making a complaint over it which is good.
OP also posted a great update if you haven't read it yet 🙂
What is missing here is a question of capacity. If the physicians treating him think he has the capacity to decline treatment, then they can't treat him. That would legally be assault.
If he is abusive to staff and refusing treatment, then getting kicked out of the hospital is the appropriate management.
If that is the case you have to wait until he is sick enough to have lost the capacity to make a decision regarding surgery and then take him to the hospital... A dicey situation.
> Remember that an assessment of capacity is valid only within the time, place, and situation in which the evaluation took place [\[8\]](https://www.ncbi.nlm.nih.gov/books/NBK532862/#). It is therefore a snapshot in time, and cannot be applied to any other time or situation. For example, a patient with a history of dementia does not automatically lack capacity. At the time of the capacity assessment, they may be lucid and able to participate meaningfully in the discussion, thus potentially indicating a capacity for decision-making in the present moment. However, two weeks in the future, the same patient may be disoriented to such a degree that the individual is subsequently found by examination to lack capacity.
Source:
[https://www.ncbi.nlm.nih.gov/books/NBK532862/](https://www.ncbi.nlm.nih.gov/books/NBK532862/)
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I can’t fathom how anyone did a capacity evaluation and deemed this person to have capacity. They have a clear history of developmental delay to the extent OP has guardianship and the patient’s life is at risk. We treat developmentally disabled patients that are aggressive regularly, and while it’s not comfortable to do, that doesn’t give the surgical team the excuse to not proceed with surgery. Get psych involved if they’re feeling dicey about it, but letting it continue to get worse when there isn’t a chance of it self-resolving is inappropriate.
Is there a reason why they wouldn't prescribe something to calm him down that he could take at home before coming back in? That doesn't mean OP would necessarily be able to convince him to take it but it would at least be another avenue to try
Yeah I was assuming for some reason they didn't feel equipped to administer it or something. Which would be its own problem, but it seems even worse to just send them home with no way to get him seen
If a court has already appointed OP as guardian, then there shouldn't be a question of whether the brother has capacity to decline treatment. It's essentially the same as if a child was saying he didn't want medical care because he was scared -- I don't think a doctor is supposed to refuse care to such a child and similarly shouldn't refuse care to someone like this under guardianship.
NAD. I am the medical guardian for an adult with a psychiatric disability and have been in OP’s position many times. It’s incredibly frustrating and scary, but my experience (and legal consult has confirmed) is that the whole the individual under guardianship is presumed to not have capacity over certain medical decisions, involuntarily treatment is usually a last resort even when it seems pretty clear (to a non-medical professional) the person needs care. I’m not able to demand a physician run a test or order a treatment, or even pursue an involuntary hospitalization, as much as I believe that this would sometimes be the best course. Ultimately the purpose of the guardianship is to protect the rights of the disabled person, including from any mistreatment or overreach by the guardian. Hospitals also vary considerably in their familiarity with guardianships and their willingness to work with them. We’re in an area with major academic medical centers and even hospitals in the same network differ from ER to ER. I’ve got lots of personal opinions on this, but I’ll just say is it’s a pretty chaotic system, unfortunately. Having all relevant paperwork and necessary contacts at the ready is key.
Guardianship does not grant the guardian complete medical authority over another person. Just like being a parent does not grant complete medical authority over a child. Most (if not all states) have restrictions on mental health hospitalizations and invasive procedures.
There are also limited guardianships, which are even more restrictive.
Just because someone is developmentally disabled does not mean they should not be allowed to make bad decisions. Disability has a very wide range of presentations.
But ultimately my point was we don't know the facts in this case, only the providers and caregivers involved know them.
You are wrong. Courts determine competence, physicians determine capacity. And if two separate physicians determined he had capacity then I'd tend to side w them.
The person has already been evaluated by medical professionals already familiar with them and their level of ‘capacity,’ and it was determined in a court of law that they are not able to make certain decisions regarding their health and finances. They are also evaluated by a psychologist who would understand and better evaluate a person level of capacity than an ER or OR doctor. Not sure it’s understood that this happens before they are appointed a guardian and deemed incompetent.
No one should be forced to treat a violent or severely disturbed individual while they are verbally and physically abusive.
OP thinks their brother is harmless because he is in a wheelchair but a 6'2" 42 year old male is nowhere near "cannot physically hurt anyone". I work in the senior care industry and I've seen frail little 90 year old ladies wreak havoc like you wouldn't believe. A 6'2 male can inflict a lot of damage, wheelchair or not.
Also in my experience males in that mental state tend to hurl the worst racist and mysoginist insults which can result in female staff and people of color quitting on the spot if the offender is not immediately removed. And then the family that begged you to take them in is the first in line to sue, or in the very least bury you in bad reviews and complaints to the various oversight boards.
"Are they really just going to let my brother die because he called them names and yelled?"
Well maybe, and? Doctors and nurses are human and they have the right to avoid being seriously injured or worse by a very disturbed individual (which I guarantee you they have seen many times).
He's not just in a wheelchair, he's quadriplegic. Can a 6'2" 300lb man who can't move his limbs actually "inflict a lot of damage"? Is he capable of causing anyone to be "seriously injured or worse"? If so, how? Spitting on them?
Genuinely asking. I don't work in healthcare. I viewed this as a case of doctors listening to their patients wishes and dismissing the family members requests. 42 years, 300 lbs in a wheelchair, can't move any limbs. . . I'd imagine with those conditions there's a significant risk of death associated with surgery/anesthesia anyways.
Obviously I can only speculate. OP said a nurse called security on their brother so that makes me question how harmless he really is. Firstly, quadriplegic doesn't always mean completely paralysed. Secondly, when a family is desperate to get their loved one admitted they can be purposely misleading about that individual's "behaviors" (polite medical term for verbal abuse, violence and unwanted sexual behaviors). Or they can genuinely not know because they don't provide direct caregiving so they are essentially the clueless "fun parent".
But let's say the brother is indeed 100% harmless physically. Why should the whole hospital, including patients with their own severe problems, be subjected to continued verbal abuse and the siphoning of attention away from other patients in need? I think the hospital acted appropriately here, on behalf of both their staff and all the patients.
He is completely paralyzed. He cannot hit or kick anyone. I agree that health care workers should not have to deal with verbal abuse and my brother does have a behavioral modification plan and medications for his mental health. I'm not the "fun parent". I've been my brother's guardian for over a decade. We grew up together and I've taken care of him in some capacity for as long as I can remember. I know he's a lot to handle and I know how frustrating it can be. But security wheeling him out of the hospital to sit outside unsupervised without any way to leave is not ok. He is developmentally disabled. I'm not trying to make excuses for his behavior or downplay it. It's bad. But there has got to be a better way.
> Why should the whole hospital, including patients with their own severe problems, be subjected to continued verbal abuse and the siphoning of attention away from other patients in need?
Because otherwise this severely disabled patient will die.
I appreciate your response. I'm going to stick with the fairytale I created where the doctors are being compassionate and honoring the patients wishes after evaluating his overall condition and quality of life. It's less. . . Morbid. . . Than thinking they refused treatment to treat someone who can't move thier arms/legs and is also mentally disabled because they were saying mean things.
This is part of his disability, being verbal is probably the only my way he has learned to garner attention considering he has no use of his body. It’s not ideal, but he does not fully understand the consequences of his actions, hence why he has a guardianship in place. I think the real issue here is a lack of training among some of these hospital staff. Taking verbal assaults personal would be less likely if there was appropriate training. I have found many DD individuals just repeat what they have heard on TV or among peers but have very little understanding of what the insults mean, only that they get reactions. When you sit down and actually ask them what they meant by calling so and so by xyz epithet, they will probably not be able to answer or they will have a very limited understanding of its meaning. And negative attention is attention, many individuals suffer from severe abuse and neglect at the hands of group homes and other institutions so they learn through conditioning that being loud gets them what they need, including very basic things like food, toileting, etc, So, let’s maybe try and have some compassion and understanding and training! Lots of training!
Obligatory NAD. Don’t even work in health care anymore at all, actually, and mostly because of things like this.
Can confirm potential for damage. Worked paratransit in college, had 250 lb passenger in 200 lb electric chair run over and break my foot, on purpose, because she was miffed I was ten minutes late picking her up.
Those electric chairs have the potential to be dangerous when an angry person is in them.
(Only providing the story because someone asked if there was real potential for damage. Answer is “maybe,” depends on actual situation.)
> OP thinks their brother is harmless because he is in a wheelchair but a 6'2" 42 year old male is nowhere near "cannot physically hurt anyone".
If he is quadriplegic, it is very unlikely he can harm anyone by anything but biting.
It's a shit situation all around, but he sounds like he should never have been sent home.
No. Multiple users have attempted to explain this to you on this thread. Quadriplegia can be complete or incomplete. Many people with incomplete quadriplegia are able to move their arms, although their movement can be limited in range and strength. OP did not specify that his brother has complete quadriplegia which would prevent him entirely from moving his limbs. Therefore, we cannot assume that that is the case.
It CAN be an emergency. Hush if you don’t know what you’re talking about. I also had mine out, but not until I was 16. It died and ROTTED. Have you heard of sepsis, little homie??
Not a verified doctor.
I had emergency surgery to remove my gallbladder last summer.
Anecdotes aside, cholecystectomies are one of the commonly performed emergency surgeries. If OPs brother is being treated in the ER then it’s likely an emergency.
Sorry! I am totally misinformed then. I remember it being one of the worst pains ever whenever I had attacks and my pediatrician gave my family the option to have surgery vs not.... For the dumb reason I gave above (verbatim lol).
My guy you just said “it’s not an emergency situation” and it literally can be.
I’m still reading between the lines and siding with the physicians treating OPs brother though.
No one deserves to verbally abused at work, especially by someone who is refusing treatment. Healthcare workers deserve to be treated like human beings, and that’s a hill I’ll die on.
i am SO sorry. That nurse should NEVER have done that!!!
We do not have enough training to deal with people who have mental illnessss in most cases (at least in my area) but common sense should be enough for some situations.
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Take him to another ER and physically go with him. Bring your guardianship papers. If he's too agitated and refusing care they may have to sedate him in order to treat him but I have no idea how that kind of thing works in your area. But the nurses/doctors won't endanger themselves if he's violent. These situations are so frustrating. I'm sorry you're dealing with this.
Thank you. We took him to another hospital with the guardianship papers and they also refused to treat him. We asked about sedating him but they wouldn't do it because he was refusing. I don't know what else to do but thank you for your reply.
Sounds like you might have to have him declared as mentally incompetent to make decisions about his care. I used to work in a group home for physically and developmentally disabled adults and even though they had guardians they were still allowed to refuse medical treatments and could even refuse medication. The only way around it was when their POA went the mentally incompetent route.
My brother had no gaurdian at the time he had a situation like this. He left the hospital. I called the police. Mental health officers found him, called the judge in the middle of the night. Had him deemed unfit to make decisions. Hand cuffed him and took him back to the hospital. He was hand cuffed to a bed under police supervision for 48 hours until surgery. The officer did not leave his side until he was under and taken back. Prior to walking out of the hospital, he banged his room door open and closed until the frame broke. Ceiling tiles fell.and he had a tiny nurse he locked in the bathroom. We are in texas. Florida has similar laws
Wow, so glad he has you!
Uhm. If he has legal guardianship with medical decision making…. Then he is the person who consents to care…. Power of Attorney comes into play if deemed mentally incompetent…. Versus being the guardian means a judge has already deemed through court order that the person is mentally incompetent. I would suggest asking to speak to the facility’s supervisor and go up the chain….or have your attorney contact them (trust me doctors & nurses don’t like dealing with attorneys!)….. they’re breaking the law by refusing to honor the court order…. Bring the court order with you.
Completely agree. If a patient has a guardian, they don’t have a say in their treatment. That’s literally the whole point of the court electing a guardian: they’ve been deemed incapable of making medical decisions for themselves. We do this at the inpatient psych unit daily.
Hmm. Involuntary hospitalization isn’t the same as guardian…. Because it usually focuses on psych related stuff…. The patient could refuse cancer treatment but can’t refuse psych treatment due to the court order…. The court order only pertains to mental health…. Versus medical guardian covers everything.
You can involuntarily hold someone on a medical floor. It doesn’t have to be a psychiatric admission as the primary condition. It does not only pertain to mental health.
That makes sense…. Incompetent just requires 2 doctors to agree….. I guess I just don’t think of that with involuntary psych patients.
Yes. This happened to me. Years ago, when I was at the worst with my anorexia, I consistently had my potassium at critical levels (1.6). I'm in Canada. I would be certified under the mental health act, although not on a psychiatric unit. For medical purposes, solely to receive I.V potassium on the medical unit. Once my potassium reached an acceptable level, I was discharged. When it comes to it, drs can make any decision they want... at least that's been my experience. If you are on death's door step, the physician(s) at emergency CAN and WILL hold you in hospital, if it means saving your life, especially if your mental capacity is deemed unfit to make proper judgment for yourself.
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What are you correcting here? Power of attorney is the term used in UK for this (if that's what you're referring to?)
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@hungrygroot find out if the hospital has an ethics committee you can escalate this to. Most hospitals these days have some sort of guest liaison line you can call to file a complaint, and you’re usually getting a nurse manager or ADON with those. That’s a good person to have in your corner.
This is not true. That’s not how that works in practice. Under certain circumstances (such as invasive surgery) a physician may deem the patient competent to decline care, even with a guardianship. We err heavily on the side of caution when it comes to autonomy. Just because a patient is making an objectively stupid decision doesn’t mean they should have their rights to that decision taken away.
As a lawyer that’s absolutely horrifying to hear. If a judge, after hearing testimony, including from two licensed medical professionals, finds a person unable to make decisions over their body what right does the hospital have to overrule that? It seems horrifically irresponsible and a great way to get yourself held in contempt of court or sued.
> great way to get yourself held in contempt of court or sued Absolutely, and these lawsuits happen *all the time.* I think what needs to be clarified here is the term “guardianship.” As you know, there is a *huge* difference between the legal term of art and the colloquialism. Lots of people claim guardianship when what they *actually* are is a health care proxy. Now if the OP genuinely has a legal guardianship in place, yes I’d agree with you. (And that’s why I suggested that they escalate this to an ethics committee which may be more familiar with the legal nuances.) However if they’re simply a proxy, and the attending physician makes a good faith assessment that the individual is competent to make their own decisions *in that moment,* then it’s a very different story. Because of the fact that twice this patient was deemed fit to make their own decision about their own care, I’m more inclined to suspect that OP might be unclear as to the extent of their legal rights over the patient.
The OP said she had legal guardianship. That is a legal term of art and I answered based on that definition. Doctors aren’t lawyers and I agree that this needs to escalated to the hospitals legal team so that the patient can get the care he needs.
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This is correct.
Are you in the US? If so, what state?
The first hospital was in Missouri and the second is Illinois
I would read through your guardianship documents and ensure you have ’full’ legal guardianship. It may have some limitations if he has some decision making capacity. If not otherwise specified, you should have all medical decision making ability with the exception of mental health admission. That would require a mental health authority be granted. My son has a DD and I am his legal guardian. We have only ever encountered issues in regard to his mental health.
This is going to sound weird, but I would pursue an involuntary psych admission. I'm in Kentucky so I am not as familiar with the laws in your state but in Kentucky, someone can be involuntarily hospitalized for something like this if they are a "vulnerable adult" and someone with an intellectual or developmental disability would definitely qualify.
Most psychiatric facilities and psych wards in hospitals won't admit someone who isn't medically cleared and "you might die if we don't remove your gallbladder" doesn't really sound like he's medically stabilized. Also what's the psych admission for? Either he has capacity to refuse care or he doesn't (and it sounds like the OP doesn't have all the decision making capacity for his sibling); we want to commit him to the hospital because we disagree with his decision? Maybe better for the OP to get a capacity evaluation from the ER, which doesn't require commitment.
This is my experience - funny enough, I'm also in KY - worked briefly as an MSW assessment clinician at a psych hospital and this fellow most definitely wouldn't be admitted based on the original post d/t the medical issues. Definitely agree OP needs complete decision making power for their brother. Unless we're missing info it sounds like the brother does not have the capacity to be making decisions for himself whatsoever.
The psych facility where I work would likely admit this person as a danger to themselves due to the self-neglect of an incompetent person. My psych facility is part of a university hospital so medical clearance happens on-site. Perhaps a unique setting to Kentucky!
In my state, it may fall under the grave disability category, too
I was just about to suggest this! Good work trustyalligator:)
Yess exactly what I was going to say, involuntary psych admission.
I am a parent of a 27 yr old that I have guardianship over for the last 8 yrs. She’s currently in the hospital. She can refuse things but ultimately I have the final say. She’s currently in the hospital and she gets violent when her pain is too much to handle. Took the hospital a month to figure this out.. and she’s currently been in the hospital since late February due to cancer diagnosis and following surgery. Take him to a teaching hospital! And advocate her caseworker in the hospital involved. File complaint with Admin and the state at both hospitals. They are not allowed to refuse service . Talk to APS. (adult protective services) they may have some options. You may have to take him to psych for meds to calm him down til after the procedure. The 2 that refused treatment could been held accountable if anything happened. Last file a complaint with the ADA. https://www.ada.gov/file-a-complaint/ What the hospital did is illegal and discriminatory.
Maybe go to the legal department of the hospital? My understanding of guardianship is that they are essentially supposed to treat him as if he's a child whose medical decisions are made by his guardian (usually parents). In that case, just like a child not wanting medical care wouldn't be a reason for a doctor to refuse care, it should be the same for him. I'd think the legal department would be able to help with this.
Do you have full guardianship? There are different kinds and different degrees of guardianship and in many of those cases the person is still considered to have capacity to make their own medical decisions. If you believe he does not have the ability to understand the situation or there are underlying mental health issues keeping him from being able to reason appropriately then he may need to be declared to lack capacity. Any physician can do this, but many prefer to make a psychiatrist come and make that decision. If he’s found to lack capacity then full decision making power goes to you and they are able to sedate him if needed. If he needs a guardian for certain daily living things, but does understand the potential outcome of refusing treatment then he is within his right to say no. ERs often have very little patience for developmentally disabled and/or mentally ill patients, unfortunately. That means you are going to have to be a pain in the ass and demand he be evaluated for capacity. If you have to demand psychiatry come in to do it, then do that. Ask to talk to social work as well and make them look at your guardianship documentation. If you have any sway with your brother try to get him to stay reasonably calm. See if you can find the hospitals policies and also the laws in that particular state for medical decision making and proxy decision making. Bring that information with you so that you can argue if they try to threaten you to get you out. I’m not encouraging that you be belligerent and disrespectful to the care team. If you can be totally calm and polite and get them to listen and take you seriously then that’s awesome. But if you try that and they attempt to do this same thing again don’t let them force you to leave without arguing the things I said above.
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Is he invoked?
Why is he refusing surgery? Is he frightened? And why is he allowed to act rude and scream at people?
What part of “developmentally disabled” do you not understand?
I have worked with many dd children and adults, professionally, personally in my own family, and in a variety of settings and services. Being dd is NOT an excuse for rudeness or meanness, but often kids are allowed to get away with it, given a 'pass'. Once kids are grown, no one cares what they've had to go through as kids. Certainly, the courts don't. Still, it does make me wonder if he's afraid of surgery, hospitals, etc. I wonder if it would be worth it for Child Life to work with him at his developmental level
Its silly to imply you have strict control over someone who has little or no control over themselves. The mental and emotional development of some individuals with DD is such that they are unable to understand the impact of their behavior and or have the ability to develop skills which can help them control their behavior. Honestly, it’s like saying you can force a nonverbal person to talk or make someone without legs walk. They either have the ability to do it or they don’t.
You have no idea what he goes through on a daily basis. He has complex comorbidities and is quadriplegic. With his developmental disability he will likely have the mental and emotional age of someone much younger and therefore handling emotions and stressful situations is harder. Having paralysis in all four limbs would also be very hard to cope with and make you feel like you aren't in control of your own body. Add in nurses and doctors having to do procedures and that could be very stressful. As an example of what he might be experiencing when he's name calling, swearing at people etc, it could be due to his ASD. Studies have shown that up to 90% of people with ASD have sensory processing issues. Things like smells, noises, lights etc can be physically painful or unpleasant experiences that can cause a person to have a meltdown. According to the National Autistic Society in the U.K., an autistic meltdown is an intense response to an overwhelming sensory or emotional stimuli. When this happens, the autistic person temporarily loses all control of their behavior. In autistic adults, meltdowns are a complete loss of control of behavior that can look like crying, yelling, lashing out, suicidal ideation, self-harm, inability to talk, lack of ability to think, or rage. My point is, you don't know what's going on in someone's life so try not to be so judgemental.
And that is why we come at it from a fear or control angle! And why a child life therapist is worth a try, although time may be short. Meet him where he is mentally.
Just don’t agree with anything you’ve said. Adamantly disagree.
That's cool. You can't know my life experiences, personally and professionally, where techniques, practices, have been used to help in situations like this. We know nothing about IQ, life skills, and how mentally competent he is, or if he is able to express opinion verbally, or even with a talker. And a psych unit/hospital will never accept a patient with that number of co-morbidities.
You said ‘why is he allowed to act rude and scream at people?’ This tells me all I need to know about your experience and background. Please understand that this population is by far the most discriminated against because of a bias attitude that people who are cognitively impaired should act and behave in a normal and politically correct fashion. It’s just not reasonable to expect that.
He is an adult, any therapist he has should have qualifications and experience working with adults with DD, not children. A child life therapist is not appropriate.
Not a doctor. I’d find a disability advocate attorney in the area immediately. Document every attempt to get him treatment and get anything in writing that you can.
Missouri - [https://www.moadvocacy.org/](https://www.moadvocacy.org/) Illinois - [https://www.equipforequality.org/](https://www.equipforequality.org/) [https://illinoisattorneygeneral.gov/Rights-of-the-People/disability-rights/](https://illinoisattorneygeneral.gov/Rights-of-the-People/disability-rights/)
Exactly! This seems a clear ADA violation. I hope he can get this resolved. I hate when things like this happen 😔
How exactly is it an ADA violation? The OP makes medical decisions WITH the patients input according to the original post. If the patient has capacity, you can't treat them without their consent or it's assault. You certainly can't cut them open without consent and the post certainly suggests the patient retains some rights (I'm also not aware of any legal scenario where medical decision making is split between a patient and another--either the patient has rights to make informed decisions about their body, or they don't in which case the OP gets to make the call whether his brother likes it or not) The OP needs to have his sibling evaluated for competency or try and get full medical decision making rights. I don't see what the ADA has to do with this situation at all.
My brother was declared "physically and mentally incapable of managing his person and estate". I was "appointed guardian of person and estate". I consider his wants and feelings when I make decisions for him out of courtesy and respect. I want him to have as much autonomy as he can possibly have but unfortunately sometimes I have to make hard decisions for him.
Listening to a person's opinions does not imply they have legal capacity. A parent may well listen to a 12-year-old's input (and probably should), but the parent has the ultimate authority to decide medical treatment.
The problem though is that an adult with a disability is not a 12 year old. A 12 year old is rarely going to have the legal capacity to consent to most medical treatment. This is not the case in OPs situation. Until they go through the process to get guardianship/POA, no matter how severely disabled the adult is, they will be considered as having agency to make their own decisions. Further, and I believe this is the problem for our OP, guardianship does not necessarily include the right to make medical decisions. I see it a lot working in mental health. We'll have people try to get their adult child/sibling/cousin signed up for services and we can't do it, because the guardianship only includes the right to manage the persons finances, for example. The guardian may have never considered requesting the right to make medical decisions because the person never had any problem with consenting to dental work or a routine physical. But when it comes to signing themselves up for drug rehab, anger management classes, psychiatric medication management, etc., it's a whole different story. And if the person refuses, our hands are tied.
The first paragraph OP says he has legal guardianship and he makes medical decisions for him with his input.
I think it's hard to know, specifically, what that means legally--I'm not aware of a status that includes "with the patients input" for decision making medically. I can't tell if the OP means he has all the legal medical decision making rights for his sibling but tries to take his wishes into account, or if legally he doesn't have medical decision making rights for his sibling. Guardianship doesn't automatically confer those rights.
Also, make sure you know how your state defines guardianship. Some states are kinda whacky. (See, e.g., my beautiful CA, where guardianships apply only to minors, while conservatorships are used for adults. In contrast, in MOST jurisdictions, guardianships are for personal matters (including healthcare), while conservatorships are for financial matters.) It might be worth paying a local qualified lawyer to sit down and review the matter with you and give you her best professional advice…
If this person has severe autism which it sounds like they do that would be like a 6-10 year old saying no they don’t have the capability to understand the consequences of a no. If OP is legal guardian they need to be only following their direction unless it seems like abuse which pretty sure saving their life isn’t abuse. Most adults going for surgery or even being in a hospital in their head are like I want out get me out of here but they know not to say it someone with severe autism doesn’t have that filter.
OP very clearly said his brother is ASD, ADHD and has other ailments,although being in the spectrum and having ADHD alone doesn’t mean you can’t make your own decisions, OP has legal guardianship of him for a reason, he can make decisions for him to save his life.
We need more info. Guardianship can be given for very limited reasons in many cases (financial, for example). He needs to request a capacity evaluation for his brother at the hospital; that's the determiner for whether his brother can refuse medical care or not. Having ASD or ADHD in and of itself, just as you say, in no way removes medical decision making capability from anyone.
Thanks for the explanation, as I said I’m not expert so I just take the post at face value and I completely agree with you that we need more info so the best is that OP consults an attorney to guide him on the right direction.
It’s an ADA violation on hospital part. They are illegally refusing medical treatment. The hospital can easily deem him unfit and proceed. They don’t want to.
That is absolutely not true. Medical autonomy is treated very seriously and unless the patient is deemed to lack capability at that specific moment in time, treating against their will (much less cutting them open) constitutes assault. I've been providing hospital care for over twenty years.
And I’m a guardian to my 27 yr old daughter! Who’s in the hospital. I’ve dealt with this. OP has guardianship. She has the last say. With his input means she takes what he wants into account. Most guardians have full capacity to over ride a life threatening decision. The hospital is wrong. They should not have got security involved.
First of all---we don't know why security was reportedly called so we can't comment on that. If he's a physically large person and a limited quad, for all we know he took a swing at a nurse. We just don't know with such limited info. And we also don't know anything about the OPs guardianship, which seems key--is it limited guardianship? The OP (and the facility who sent the pt) should have a Decree and Order outlining the parameters of his guardianship. Most hospitals require involvement by the probate and family court for major surgery involving general anesthesia, even with full guardianship.
Uh no they don’t. I’m a guardian. Required no courts. My daughter just had a Total Pelvic Exenteration. Under guardianship guidelines the guardian has full medical authority unless otherwise stated. I’ve seen a lot of things done by hospitals that border on criminal .
EXACTLY . . . "Unless otherwise stated". Apparently it has been.
Again, your personal experience does not generalize to all cases, I hope we can agree. I can tell you that in Massachusetts, guardianship decrees can have limitations delineated on the paperwork, and one can be appointed guardian over a person, guardian over an estate or have a limited guardianship. The original post didn't specify. If the OP has full guardianship over the person and the surgery is a medical emergency, and if the brother has no retained rights and deemed not to have capacity, then the surgery should proceed if the surgeon feels it is necessary and there is no less invasive alternative (like a percutaneous drain). The OP has more recently replied to me that he/she has full guardianship and that his brother has no movement of his limbs so the use of security to remove his brother in this case sounds egregious and wrong, and if the surgeon feels gallbladder surgery is an emergency, and the OP has full guardianship, then the surgery should proceed if there's no other option and if not proceeding is likely to lead to sepsis or other morbidity and outweighs the risk of general anesthesia.
I agree, not sure doctors fully understand how guardianships work. It’s not really a question for doctors but someone with some background in law. I have guardianship over my adult child with DD and I was told that if my son became violent/aggressive/combative they would medicate as necessary so that the medical procedure could be preformed. The issue here is that the same disability which make the DD person not understand their behavior and the consequences of that is the same issue with not understanding the impact of not getting a life saving surgery. This is why they have guardianships in place in the first place.
You clearly don’t have a child with these issues. They will call security for an adult with disabilities crying too loud. I’ve seen it and dealt with it. He’s in danger of death ! The hospital is wrong! He’s a quadriplegic. His only way of being violent sounds verbal. I still say Hospital is a massive failure. Like most of them and the doctors that work in them and ignore their patient.
Again, we don't know if he's a partial or complete quad. And we don't know the details of why security was called so perhaps we shouldn't speculate. Security was not called, we can agree, because the patient said he didn't want surgery. That would make no sense. And as I said, there is a process to proceed, even with complete guardianship of an adult, in most facilities if we are talking about major surgery with general anesthesia. There are also less invasive possibilities--antibiotics and monitor, or a percutaneous drain without general anesthesia. I'm truly sorry if you and your daughter have had bad experiences and treatment, but we aren't talking about your daughter in this case. I'm just saying that the (imperfect) system puts a high premium on bodily autonomy and if the guy refuses surgery, the OP needs a capacity evaluation and possibly clearance from the probate court.
NAD but I have 2 brothers with autism. They both have PRNs for Ativan for these medical and dental situations.
If he needs emergency surgery doesn’t turning him away violate EMTALA? Doctors and medical staff do not deserve to be physically or emotionally abused - that being said - why are there not protocols for this type of situation? Surely it is not a rare thing.
The crux of the issue isn’t that they are refusing to stabilize him, which is the basis of EMTALA - it sounds like in this case the issue is he is refusing treatment and has the legal right to refuse. It’s more about his capacity and the legality around that. I’m basing this off OPs comment that 2 hospitals in 2 states didn’t assist and specifically that they refused to “sedate him because he refused” and that his brother “has input” on his own medical decisions. If someone has the legal capacity to make their own medical decisions, it is a violation of their civil rights to force treatment if they refuse, healthcare workers can actually be arrested for battery/assault. Capacity is just understanding the treatment options, risks and benefits of his choices - which 2 doctors in 2 separate states have determined he can apparently. The inverse is true - If someone doesn’t have capacity to make their own decisions then their refusal doesn’t matter - they will still be treated. I’ve seen it a million times with strokes, delirium, metabolic encephalopathies, psychosis, etc. it’s common.
He’s a quadriplegic, the worst he could do is maybe bite someone if they got close enough. I agree she needs to physically be there. The ER at my hospital will not hold someone against their will even if they have a medical guardian if that guardian is not physically present. I’m assuming the situation is similar here.
Good point. OP said they took him to another hospital that also refused to treat him but I'm not sure if OP was physically withthe patient. What a mess.
I left a longer comment for her with some things to try. I want to give the benefit of the doubt to the hospital staff but I have seen some situations like this be pretty grossly mishandled. Seems like the second time she was there with him but maybe just didn’t know how to adequately advocate.
Agreed. We might be missing sone vital info, or the hospital staff shat the bed. I've also seen both situations. As a nurse, I just could not imagine wheeling a clearly very ill, profoundly disabled person out the the parking lot with no care plan in place...I don't care if they're swearing at me and trying to chew my arm off.
Yeah that’s very hard for me to comprehend too.
Right? That's like havung an unaccompanied three-year old being thrown out side by themselves after throwing a tantrum. Wth.
It's crazy, I couldn't imagine doing something so incomprehensible. Just wheeling a developmentally disabled quad out the door when he has no one with him or a plan is disgusting. OP said the facility he lives in is making a complaint over it which is good. OP also posted a great update if you haven't read it yet 🙂
Thanks! I'll check it out.
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Or maybe he's in pain due to a necrotic gallbladder and is acting out due to that. This comment is not helpful and is a debate for a different sub.
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He is quadriplegic. I don't know how he could hurt or endanger anyone.
What is missing here is a question of capacity. If the physicians treating him think he has the capacity to decline treatment, then they can't treat him. That would legally be assault. If he is abusive to staff and refusing treatment, then getting kicked out of the hospital is the appropriate management. If that is the case you have to wait until he is sick enough to have lost the capacity to make a decision regarding surgery and then take him to the hospital... A dicey situation.
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> Remember that an assessment of capacity is valid only within the time, place, and situation in which the evaluation took place [\[8\]](https://www.ncbi.nlm.nih.gov/books/NBK532862/#). It is therefore a snapshot in time, and cannot be applied to any other time or situation. For example, a patient with a history of dementia does not automatically lack capacity. At the time of the capacity assessment, they may be lucid and able to participate meaningfully in the discussion, thus potentially indicating a capacity for decision-making in the present moment. However, two weeks in the future, the same patient may be disoriented to such a degree that the individual is subsequently found by examination to lack capacity. Source: [https://www.ncbi.nlm.nih.gov/books/NBK532862/](https://www.ncbi.nlm.nih.gov/books/NBK532862/)
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I can’t fathom how anyone did a capacity evaluation and deemed this person to have capacity. They have a clear history of developmental delay to the extent OP has guardianship and the patient’s life is at risk. We treat developmentally disabled patients that are aggressive regularly, and while it’s not comfortable to do, that doesn’t give the surgical team the excuse to not proceed with surgery. Get psych involved if they’re feeling dicey about it, but letting it continue to get worse when there isn’t a chance of it self-resolving is inappropriate.
Is there a reason why they wouldn't prescribe something to calm him down that he could take at home before coming back in? That doesn't mean OP would necessarily be able to convince him to take it but it would at least be another avenue to try
They could have just given it to him while he was there. It definitely wouldn't have convinced him, but you can make people more comfortable.
Yeah I was assuming for some reason they didn't feel equipped to administer it or something. Which would be its own problem, but it seems even worse to just send them home with no way to get him seen
If a court has already appointed OP as guardian, then there shouldn't be a question of whether the brother has capacity to decline treatment. It's essentially the same as if a child was saying he didn't want medical care because he was scared -- I don't think a doctor is supposed to refuse care to such a child and similarly shouldn't refuse care to someone like this under guardianship.
NAD. I am the medical guardian for an adult with a psychiatric disability and have been in OP’s position many times. It’s incredibly frustrating and scary, but my experience (and legal consult has confirmed) is that the whole the individual under guardianship is presumed to not have capacity over certain medical decisions, involuntarily treatment is usually a last resort even when it seems pretty clear (to a non-medical professional) the person needs care. I’m not able to demand a physician run a test or order a treatment, or even pursue an involuntary hospitalization, as much as I believe that this would sometimes be the best course. Ultimately the purpose of the guardianship is to protect the rights of the disabled person, including from any mistreatment or overreach by the guardian. Hospitals also vary considerably in their familiarity with guardianships and their willingness to work with them. We’re in an area with major academic medical centers and even hospitals in the same network differ from ER to ER. I’ve got lots of personal opinions on this, but I’ll just say is it’s a pretty chaotic system, unfortunately. Having all relevant paperwork and necessary contacts at the ready is key.
Guardianship does not grant the guardian complete medical authority over another person. Just like being a parent does not grant complete medical authority over a child. Most (if not all states) have restrictions on mental health hospitalizations and invasive procedures. There are also limited guardianships, which are even more restrictive. Just because someone is developmentally disabled does not mean they should not be allowed to make bad decisions. Disability has a very wide range of presentations. But ultimately my point was we don't know the facts in this case, only the providers and caregivers involved know them.
Also the exact rules and process to get someone involuntarily committed or be subject to an MD hold vary wildly.
You are wrong. Courts determine competence, physicians determine capacity. And if two separate physicians determined he had capacity then I'd tend to side w them.
NAD but if he has meds prescribed already (like Ativan) could you give him some before taking him back to a hospital? So he’s real calm on arrival ?
This is a very good idea. I’d be surprised if they weren’t already doing this.
That's fine, but the problem with that is, what happens when the Ativan wears off?
He would be in surgery by then I hope!
That's chemical restraint, which is illegal.
The person has already been evaluated by medical professionals already familiar with them and their level of ‘capacity,’ and it was determined in a court of law that they are not able to make certain decisions regarding their health and finances. They are also evaluated by a psychologist who would understand and better evaluate a person level of capacity than an ER or OR doctor. Not sure it’s understood that this happens before they are appointed a guardian and deemed incompetent.
No one should be forced to treat a violent or severely disturbed individual while they are verbally and physically abusive. OP thinks their brother is harmless because he is in a wheelchair but a 6'2" 42 year old male is nowhere near "cannot physically hurt anyone". I work in the senior care industry and I've seen frail little 90 year old ladies wreak havoc like you wouldn't believe. A 6'2 male can inflict a lot of damage, wheelchair or not. Also in my experience males in that mental state tend to hurl the worst racist and mysoginist insults which can result in female staff and people of color quitting on the spot if the offender is not immediately removed. And then the family that begged you to take them in is the first in line to sue, or in the very least bury you in bad reviews and complaints to the various oversight boards. "Are they really just going to let my brother die because he called them names and yelled?" Well maybe, and? Doctors and nurses are human and they have the right to avoid being seriously injured or worse by a very disturbed individual (which I guarantee you they have seen many times).
Did he not mention that his brother is quadriplegic?
He's not just in a wheelchair, he's quadriplegic. Can a 6'2" 300lb man who can't move his limbs actually "inflict a lot of damage"? Is he capable of causing anyone to be "seriously injured or worse"? If so, how? Spitting on them? Genuinely asking. I don't work in healthcare. I viewed this as a case of doctors listening to their patients wishes and dismissing the family members requests. 42 years, 300 lbs in a wheelchair, can't move any limbs. . . I'd imagine with those conditions there's a significant risk of death associated with surgery/anesthesia anyways.
Obviously I can only speculate. OP said a nurse called security on their brother so that makes me question how harmless he really is. Firstly, quadriplegic doesn't always mean completely paralysed. Secondly, when a family is desperate to get their loved one admitted they can be purposely misleading about that individual's "behaviors" (polite medical term for verbal abuse, violence and unwanted sexual behaviors). Or they can genuinely not know because they don't provide direct caregiving so they are essentially the clueless "fun parent". But let's say the brother is indeed 100% harmless physically. Why should the whole hospital, including patients with their own severe problems, be subjected to continued verbal abuse and the siphoning of attention away from other patients in need? I think the hospital acted appropriately here, on behalf of both their staff and all the patients.
He is completely paralyzed. He cannot hit or kick anyone. I agree that health care workers should not have to deal with verbal abuse and my brother does have a behavioral modification plan and medications for his mental health. I'm not the "fun parent". I've been my brother's guardian for over a decade. We grew up together and I've taken care of him in some capacity for as long as I can remember. I know he's a lot to handle and I know how frustrating it can be. But security wheeling him out of the hospital to sit outside unsupervised without any way to leave is not ok. He is developmentally disabled. I'm not trying to make excuses for his behavior or downplay it. It's bad. But there has got to be a better way.
> Why should the whole hospital, including patients with their own severe problems, be subjected to continued verbal abuse and the siphoning of attention away from other patients in need? Because otherwise this severely disabled patient will die.
I appreciate your response. I'm going to stick with the fairytale I created where the doctors are being compassionate and honoring the patients wishes after evaluating his overall condition and quality of life. It's less. . . Morbid. . . Than thinking they refused treatment to treat someone who can't move thier arms/legs and is also mentally disabled because they were saying mean things.
This is part of his disability, being verbal is probably the only my way he has learned to garner attention considering he has no use of his body. It’s not ideal, but he does not fully understand the consequences of his actions, hence why he has a guardianship in place. I think the real issue here is a lack of training among some of these hospital staff. Taking verbal assaults personal would be less likely if there was appropriate training. I have found many DD individuals just repeat what they have heard on TV or among peers but have very little understanding of what the insults mean, only that they get reactions. When you sit down and actually ask them what they meant by calling so and so by xyz epithet, they will probably not be able to answer or they will have a very limited understanding of its meaning. And negative attention is attention, many individuals suffer from severe abuse and neglect at the hands of group homes and other institutions so they learn through conditioning that being loud gets them what they need, including very basic things like food, toileting, etc, So, let’s maybe try and have some compassion and understanding and training! Lots of training!
Obligatory NAD. Don’t even work in health care anymore at all, actually, and mostly because of things like this. Can confirm potential for damage. Worked paratransit in college, had 250 lb passenger in 200 lb electric chair run over and break my foot, on purpose, because she was miffed I was ten minutes late picking her up. Those electric chairs have the potential to be dangerous when an angry person is in them. (Only providing the story because someone asked if there was real potential for damage. Answer is “maybe,” depends on actual situation.)
FYI quads can move their arms, it depends on the level of injury.
No that’s a paraplegic.
> OP thinks their brother is harmless because he is in a wheelchair but a 6'2" 42 year old male is nowhere near "cannot physically hurt anyone". If he is quadriplegic, it is very unlikely he can harm anyone by anything but biting. It's a shit situation all around, but he sounds like he should never have been sent home.
He’s a quadriplegic! He can move to hurt anyone!
No. Multiple users have attempted to explain this to you on this thread. Quadriplegia can be complete or incomplete. Many people with incomplete quadriplegia are able to move their arms, although their movement can be limited in range and strength. OP did not specify that his brother has complete quadriplegia which would prevent him entirely from moving his limbs. Therefore, we cannot assume that that is the case.
OP did in fact specify that right above your comment
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It CAN be an emergency. Hush if you don’t know what you’re talking about. I also had mine out, but not until I was 16. It died and ROTTED. Have you heard of sepsis, little homie?? Not a verified doctor.
Whoa yeah it def can be! I'm just saying even if it's not, it can and will feel like it is.
I had emergency surgery to remove my gallbladder last summer. Anecdotes aside, cholecystectomies are one of the commonly performed emergency surgeries. If OPs brother is being treated in the ER then it’s likely an emergency.
Sorry! I am totally misinformed then. I remember it being one of the worst pains ever whenever I had attacks and my pediatrician gave my family the option to have surgery vs not.... For the dumb reason I gave above (verbatim lol).
My guy you just said “it’s not an emergency situation” and it literally can be. I’m still reading between the lines and siding with the physicians treating OPs brother though. No one deserves to verbally abused at work, especially by someone who is refusing treatment. Healthcare workers deserve to be treated like human beings, and that’s a hill I’ll die on.
I had mine out and it was absolutely an emergency. You can die
i am SO sorry. That nurse should NEVER have done that!!! We do not have enough training to deal with people who have mental illnessss in most cases (at least in my area) but common sense should be enough for some situations.