Patient who has had 30-40 ECT treatments

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samac

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We have a patient that recently moved to our catchment area. They are young and have a diagnosis of BPD and ASD.
They’ve had over 30 ECT treatments in another state already for chronic self injurious behavior. Their self injurious behavior is severe, requiring medical hospitalizations due to blood loss. Their guardian and the patient are pushing for us to continue doing ECT, but there’s not a clear indications and given the patient is <21 and has had so many treatments with benefits only lasting a few days at a time continually shocking their brain doesn’t seem to be the best option, there’s also a significant lack of outpatient ECT in our area for them to establish maintenance ECT, we’re an acute unit, they would like for us to keep the patient on the unit and complete 30 more ECT treatments but that’s just not feasible.
They’re currently on Prozac, low dose Klonopin, naltrexone, and trazodone.
Does anyone have any good studies to share on long term effects of excessive ECT?
Anyone have any other medication recommendations for chronic self injurious behavior?

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What’s BPD? Borderline? Unless they are catatonic, ECT doesn’t “treat” aggression or self harm in autism. I’m not sure you have an ECT target here (based on your description) which I would briefly describe as mood, psychosis, and catatonia/NMS. Again it’s hard to say based on the description, but it might be futile based on the lack of target alone.

The number is “just a number.” If mood symptoms aren't improving after treatments 15-20 (assuming you’ve gotten to max dose ~576 mC and bilateral brief pulses), there’s no further benefit to be expected. But that’s a totally different situation than “this kid was catatonic and with ECT is slightly less catatonic but now we have been treating him for years.” In those cases (as above) you might be treating indefinitely.

Similar to the “bridge” and “destination” concept of heart failure interventions.

At our institution we have kids who (are usually ASD with catatonia or other DD) who have had literally hundreds of ECT treatments as part of maintenance courses. There is also some literature on the controversial concept of “ECT dependence.” So no, there don’t appear to be long term deleterious effects of ECT (aside from the variable local impact on memory formation).
 
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What’s BPD? Borderline? Unless they are catatonic, ECT doesn’t “treat” aggression or self harm in autism. I’m not sure you have an ECT target here (based on your description) which I would briefly describe as mood, psychosis, and catatonia/NMS. Again it’s hard to say based on the description, but it might be futile based on the lack of target alone.

The number is “just a number.” If mood symptoms aren't improving after treatments 15-20 (assuming you’ve gotten to max dose ~576 mC and bilateral brief pulses), there’s no further benefit to be expected. But that’s a totally different situation than “this kid was catatonic and with ECT is slightly less catatonic but now we have been treating him for years.” In those cases (as above) you might be treating indefinitely.

Similar to the “bridge” and “destination” concept of heart failure interventions.

At our institution we have kids who (are usually ASD with catatonia or other DD) who have had literally hundreds of ECT treatments as part of maintenance courses. There is also some literature on the controversial concept of “ECT dependence.” So no, there don’t appear to be long term deleterious effects of ECT (aside from the variable local impact on memory formation).
Yes, BPD is borderline.
I agree there’s not a clear indication for ECT in this case. The family and patient are firmly demanding it, I’m firmly saying no back.
That’s interesting that there doesn’t appear to be any long term effects.
 
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Yes, BPD is borderline.
I agree there’s not a clear indication for ECT in this case. The family and patient are firmly demanding it, I’m firmly saying no back.
That’s interesting that there doesn’t appear to be any long term effects.

At least on the cognitive side of things, we expect temporary memory issues while they are undergoing ECT, but no long-term effects from what is available in the lit. If anything, the data show an improvement in memory performance, that coincides with amelioration of symptoms, likely due to better ability to engage and put forth effort. Every single patient I have seen who is reports ongoing cognitive issues has had perfectly normal performance on objective measures (so, subjective deficits that usually map on to recurrence of depressive sx) or they have failed PVTs in a non-credible manner (malingering or somatization).
 
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This sounds like the type of patient we worked with at the long-term residential program I worked at for the last several years. Desperate parents who are looking for medical intervention to treat something that requires a much different approach. Part of what we would have to treat is the secondary effects of dealing with the mental health system which has often made these patients worse. Also, it is not unusual for parents of ASD type kids to have some rigid thinking patterns of their own.
 
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Did they have a documented reduction in the previous target behaviors with treatment? If they went from 50 self harm incidents a year to 20, regardless of the diagnosis, it would indicate some benefit from at least some component of the previous treatment.

And by 30, do you mean 30 acute courses? Or do you mean 10 weeks of 3 shocks a week, with several of those weeks being titrating the stimulus? Because there's a huge difference.
 
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Did they have a documented reduction in the previous target behaviors with treatment? If they went from 50 self harm incidents a year to 20, regardless of the diagnosis, it would indicate some benefit from at least some component of the previous treatment.

And by 30, do you mean 30 acute courses? Or do you mean 10 weeks of 3 shocks a week, with several of those weeks being titrating the stimulus? Because there's a huge difference.
Honestly, no idea the extent of the change in self harm behaviors or effect.
I know the patient likes ECT and they have said if they don’t get ECT they’ll harm themselves.
It’s been somewhere between 30-40 sessions total, 4 of them in an acute hospitalization at our facility about a month ago. They’ve moved between a few different states and the records are scattered, they were under the care of a different team last admission here so Monday will be my first personal encounter with this patient.
 
Honestly, no idea the extent of the change in self harm behaviors or effect.
I know the patient likes ECT and they have said if they don’t get ECT they’ll harm themselves.
It’s been somewhere between 30-40 sessions total, 4 of them in an acute hospitalization at our facility about a month ago. They’ve moved between a few different states and the records are scattered, they were under the care of a different team last admission here so Monday will be my first personal encounter with this patient.
I always feel uncomfortable when patients threaten me like that. Despite that discomfort, if it really seems to decrease the behavior it's (in my opinion) less harmful than antipsychotic polypharmacy or 5 psychotropics. It's also much less harmful than the acute blood loss so long as it means one less episode of acute blood loss.

The real question is what system is best for this patient, since they seem to be an outpatient ECT candidate. Is there nowhere else offering OP ECT that's within a reasonable drive for the family? If not, can the family be convinced to travel somewhere further if it means they can receive OP ECT?
 
Honestly, no idea the extent of the change in self harm behaviors or effect.
I know the patient likes ECT and they have said if they don’t get ECT they’ll harm themselves.
It’s been somewhere between 30-40 sessions total, 4 of them in an acute hospitalization at our facility about a month ago. They’ve moved between a few different states and the records are scattered, they were under the care of a different team last admission here so Monday will be my first personal encounter with this patient.

At minimum, you are justified in holding off on making any recommendations until you have a chance to review ALL relevant medical records, and feel you have an adequate understanding of the patients history. That includes the operational detail from the ECT sessions including stimulus, seizure length, and medications used. The patient and family's reaction to this approach will tell you a great deal. Do they react positively, wanting you to know what you need to know in order to safely take care of the patient? Or do they become huffy and obstructionist when you try and do your job well?

If it's the former, you can probably work with them. If it's the latter, then byyyeeeeeeeeeeee.

They can't force you to perform ECT.
 
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I always feel uncomfortable when patients threaten me like that. Despite that discomfort, if it really seems to decrease the behavior it's (in my opinion) less harmful than antipsychotic polypharmacy or 5 psychotropics. It's also much less harmful than the acute blood loss so long as it means one less episode of acute blood loss.

The real question is what system is best for this patient, since they seem to be an outpatient ECT candidate. Is there nowhere else offering OP ECT that's within a reasonable drive for the family? If not, can the family be convinced to travel somewhere further if it means they can receive OP ECT?
I don’t like a patient trying to hold the clinician hostage. Saying “give me ECT or I’ll harm myself” is a goal directed behavior that is volitional that I’m not sure how ECT treats.

After last discharge the patient was referred to the only outpatient ECT within a hour and a half drive. They had an intake appointment last month. I’ll have to get a release for records tomorrow but I’m guessing they declined to do it.
 
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At minimum, you are justified in holding off on making any recommendations until you have a chance to review ALL relevant medical records, and feel you have an adequate understanding of the patients history. That includes the operational detail from the ECT sessions including stimulus, seizure length, and medications used. The patient and family's reaction to this approach will tell you a great deal. Do they react positively, wanting you to know what you need to know in order to safely take care of the patient? Or do they become huffy and obstructionist when you try and do your job well?

If it's the former, you can probably work with them. If it's the latter, then byyyeeeeeeeeeeee.

They can't force you to perform ECT.
I do not think I’m going to be able to get all the records in that detail, there was a barrier in the last hospitalization, but I’m not sure what the barrier was.
The family is fairly demanding, they wanted us to keep the patient inpatient last hospitalization and commit to 30 ECT sessions for the patient or they were going to refuse any sessions. Ultimately they agreed to 4 sessions and an outpatient ECT referral.

I’m hoping to find a medication regimen that works better for this patient because ultimately the among. Of ECT they’ve gotten and what they’re looking for isn’t going to be sustainable outpatient anywhere near us.
 
I do not think I’m going to be able to get all the records in that detail, there was a barrier in the last hospitalization, but I’m not sure what the barrier was.
The family is fairly demanding, they wanted us to keep the patient inpatient last hospitalization and commit to 30 ECT sessions for the patient or they were going to refuse any sessions. Ultimately they agreed to 4 sessions and an outpatient ECT referral.

I’m hoping to find a medication regimen that works better for this patient because ultimately the among. Of ECT they’ve gotten and what they’re looking for isn’t going to be sustainable outpatient anywhere near us.
I mean that kind of illustrates my point. If the family thinks it's that important the pt get ECT, then they can damn well figure out how to get the records. There's no acceptable excuse for not being able to get them for care in the last few years, unless the place that did it literally burned down to the ground with all their computers. And it's not solely on you or your staff to do that. The patient and the family have an obligation to make it happen.

I refuse to play these games. I just turn into a broke record "I want to do what's best for you, and I need x and y from you for that to happen. I won't proceed with treatment unless I am confident it will provide more benefit than harm. I want to help you. I want to help you feel better".

Repeat until you're blue in the face and hang up or walk away when they start yelling. They can't hold you hostage if you refuse to be held. No bargaining.
 
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It sounds like they want you to provide respite care on a long term basis. Reinforcing institutionalization of this patient is unlikely to promote growth. I'd plan to stabilize quickly and refer them back to the OP facility 90 minutes away which is a small sacrifice for what they obviously feel is such a beneficial treatment.
 
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unfortunately there is a subset of borderline patients who LOVE ECT, get addicted to it, and demand more and more. As with any treatment for BPD there is an initial flight into health, followed by significant deterioration. Sounds like the pt needs DBT (and the parents too) more than ECT. If significant history of self-injurious behavior, then a trial of clozapine may be warranted. I have seen some pts with self-injurious behavior who have improved with ECT, but this does not sound like the case here. Going in for a course of 30 treatments is not the standard of care. I know one old psychiatrist who would do 2x BL ECT for these borderline pts. If you do anymore, he knew, the pt would get worse.

Many pts with BPD disavow their behavior and physical treatments like ECT feed into that disavowal as well as becoming a badge of honor, reflecting the seriousness and hopelessness of their case. Patients need to take responsibility for their behavior. It is the patient's choice if they harm themselves, and they need to own the consequences of that, not anyone else. If we replace ECT with Xanax or Dilaudid it is a no brainer. We do not let patients and their families hold us hostage with unrealistic demands that feed into their pathology.

The important thing in these cases is to have careful documentation of the patient's chronic risk of self-injurious behavior, the lack of benefit of inpatient care, the lack of benefit from prior ECT treatment, the lack of any clear ECT target such as depression, mania, catatonia etc, reasonable efforts to mitigate risks, and the help-rejecting complaining and pathological behavior from the pt and family that have interfered with care.

They can always seek a 2nd opinion elsewhere (including out of state) if they are unhappy with your opinion.
 
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Anyone have any other medication recommendations for chronic self injurious behavior?
I would consider clozapine. There is some evidence for its effectiveness in patients with chronic severe SIB.
 
Theres some data for naltrexone/buprenorphine although quite weak
 
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Why is the patient self-injuring? Is it an autistic repetitive behavior? Is there an external and/or internal goal?

Was the "give me ECT or self-injure" ultimatum expressing 'I want to stop self-injuring, and I believe ECT will help me do that' or 'I want ECT, and I'll self-injure to get it'?

As @Jules A points out, the parents objective appears, at least to some degree, to be ameliorating their problem (the patient) not the patient's problem (self-injury). If the believed ECT would help with the self-injury , why aren't they doing the basics of pursuing/adhering to outpatient ECT, or at the very least facilitating his inpatient ECT by getting you the records? The pattern of behavior is more consistent with trying to prolong his hospitalization and allow for future hospitalizations.
 
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The OP didn't include enough details, I don't think, to opine on whether or not ECT is appropriate in this patient. But, a couple of thoughts:

- There is clear evidence that ECT can be helpful in patients with comorbid borderline personality disorder. There is also some evidence that ECT has anti-suicidal effects. In our ECT program, we will often treat patients with comorbid personality pathology with variable degrees of success. We will typically counsel these patients about the likelihood of incomplete/partial response and that full remission often isn't the primary treatment goal. We utilize this has a treatment of last resort, often in cases where this is very concerning suicidality that makes discharge from the inpatient unit difficult.

- There's a small but growing evidence base regarding the use of ECT in severe self-injurious behavior in the setting of autism spectrum disorder. We've treated a couple of patients using this indication to great success - literally life-changing. Some people conceptualize an abrupt worsening in self-injurious behavior in these patients as a manifestation of catatonia.

- The discussion of the futility of additional treatments in the initial response to the OP is correct. There's no real evidence that ECT has long-term, deleterious effects in a dose-dependent way, perhaps with the exception of people who experience significant treatment-related cognitive impairment. While ECT is safe, it does have risks, thus continuing treatments endlessly without any clear evidence or expectation of benefit isn't a good move. If someone hasn't demonstrated some evidence of response by around 15 treatments, the treatment plan really needs to be reconsidered.
 
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Why is the patient self-injuring? Is it an autistic repetitive behavior? Is there an external and/or internal goal?

Was the "give me ECT or self-injure" ultimatum expressing 'I want to stop self-injuring, and I believe ECT will help me do that' or 'I want ECT, and I'll self-injure to get it'?

As @Jules A points out, the parents objective appears, at least to some degree, to be ameliorating their problem (the patient) not the patient's problem (self-injury). If the believed ECT would help with the self-injury , why aren't they doing the basics of pursuing/adhering to outpatient ECT, or at the very least facilitating his inpatient ECT by getting you the records? The pattern of behavior is more consistent with trying to prolong his hospitalization and allow for future hospitalizations.
It’s the “I want ECT and I’ll self-injure to get it”
The patient was on a 1:1 observation level, waited until there was a male sitter and went to the toilet because they knew they would look away and then harmed themselves. It’s all very planned to gain what they want.

I think the parents have pursued outpatient ECT but were rejected, we’ll attempt to get those records from that intake appointment tomorrow.

I’ve thought about clozaril, but from the self injurious behavior doing basic blood draws are difficult for them. I don’t know how well that would go long term.
 
It’s the “I want ECT and I’ll self-injure to get it”
The patient was on a 1:1 observation level, waited until there was a male sitter and went to the toilet because they knew they would look away and then harmed themselves. It’s all very planned to gain what they want.

I think the parents have pursued outpatient ECT but were rejected, we’ll attempt to get those records from that intake appointment tomorrow.

I’ve thought about clozaril, but from the self injurious behavior doing basic blood draws are difficult for them. I don’t know how well that would go long term.
The fundamental basis of DBT and why it has been demonstrated effective is behavioral intervention. When the treatment, medical system, and family system is reinforcing the pathology, then you will get more pathology. Coming up with a reasonable, workable, and effective behavioral plan is key. One point to remember is that when you begin to eliminate the reinforcements there will be a spike of the behavior, ie self-harm. The other key is catch them doing something good and reinforce that and by good it could be pretty minimal to start with such as you didn’t end up in restraints or isolation today, great job, heres extra whatever. Whatever you do don’t let them come up with some complicated and rigid behavioral contract that the patient and staff won’t abide by. Parents already tried that and it don’t work as it was just an attempt to control as opposed to shape which is also what hospitals always want to do.
 
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Also gotta say I almost instantly question the dual diagnosis of Autism Spectrum Disorder and Borderline Personality Disorder. This sounds wayyy more borderline personality disorder"y" than ASD and with the boom of borderline patients trying to insist they also have autism, I get suspicious of this really fast.

I don't get a ton of ASD patients just in general who go around doing NSSI in the way borderline patients have NSSI, in that it's much more of a goal directed activity for borderline patients. In ASD, it tends to be much more of a way to express frustration, possibly related to decreasing functioning (ex. as noted above a theory it could be a "catatonia spectrum" thing for ID/DD/ASD patients) or part of RRB.

The reason why I say that is because it also helps give you targets in terms of behavioral modification (and figuring out where the behavior is coming from) and appropriate referral services. As in, a patient who truly has ASD and is this low socially functioning that they're hospitalized over and over and has gotten ECT treatments should absolutely be linked with their local board of mental health/board of developmental disabilities and is highly likely to qualify for substantial funding for additional services. That is, if they have an actual reliable documented ASD diagnosis from a neuropsych eval usually including an ADOS.
 
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Once we declined to do ECT because the outpatient clinic declined the patient requested discharge and their guardian approved. No self harm over the weekend so we let it happen. Unexpected turn of events.
 
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Once we declined to do ECT because the outpatient clinic declined the patient requested discharge and their guardian approved. No self harm over the weekend so we let it happen. Unexpected turn of events.
I wouldn't call this unexpected. Boundaries are magical. Good outcome.
 
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If you (or the patient) are looking for something that gives them a lot of attention and is highly somatic, wouldn't TMS provide a better risk/benefit for primary borderline PD? At least you're avoiding the anesthetics. I'm not saying either is a good idea, just trying to do some harm reduction.
 
I wouldn't call this unexpected. Boundaries are magical. Good outcome.
I agree, it’s a good outcome. Just the way things have been going I thought there would be more of a fuss.

If you (or the patient) are looking for something that gives them a lot of attention and is highly somatic, wouldn't TMS provide a better risk/benefit for primary borderline PD? At least you're avoiding the anesthetics. I'm not saying either is a good idea, just trying to do some harm reduction.
TMS is harder to obtain around here than ECT. We have TMS but at this point it’s research patients only.
 
Once we declined to do ECT because the outpatient clinic declined the patient requested discharge and their guardian approved. No self harm over the weekend so we let it happen. Unexpected turn of events.
How severe was the ASD? I've had a couple ASD/BPD patients that had both, but they all had IQ<60 and were at least somewhat functional. Everything here screams behavioral and the outcome reinforces it. I'm guessing low likelihood that you'll see them back on your unit unless they get admitted to medicine after a self-harm episode and transfer over.

- There's a small but growing evidence base regarding the use of ECT in severe self-injurious behavior in the setting of autism spectrum disorder. We've treated a couple of patients using this indication to great success - literally life-changing. Some people conceptualize an abrupt worsening in self-injurious behavior in these patients as a manifestation of catatonia.
Any specific papers you've seen that are good? I've never heard of this but would be interested in reading more about it.
 
How severe was the ASD? I've had a couple ASD/BPD patients that had both, but they all had IQ<60 and were at least somewhat functional. Everything here screams behavioral and the outcome reinforces it. I'm guessing low likelihood that you'll see them back on your unit unless they get admitted to medicine after a self-harm episode and transfer over.


Any specific papers you've seen that are good? I've never heard of this but would be interested in reading more about it.
Patient is surprisingly highly functioning. I hope she follows up with outpatient care over inpatient.
 
Patient is surprisingly highly functioning. I hope she follows up with outpatient care over inpatient.
Hope she can find someone with the specialized knowledge or experience needed to help someone with that type of combined high functioning autism and Borderline presentation. it is hard enough to find someone effective at helping either one by itself, but put the two together and it takes some expertise. i can really only think of two patients with both so far in my career and those are both areas of expertise for me.
 
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How severe was the ASD? I've had a couple ASD/BPD patients that had both, but they all had IQ<60 and were at least somewhat functional. Everything here screams behavioral and the outcome reinforces it. I'm guessing low likelihood that you'll see them back on your unit unless they get admitted to medicine after a self-harm episode and transfer over.


Any specific papers you've seen that are good? I've never heard of this but would be interested in reading more about it.

Sure, here are a couple. Again, the evidence base is limited - largely limited to case reports - but it's not totally out of left field:



 
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Sure, here are a couple. Again, the evidence base is limited - largely limited to case reports - but it's not totally out of left field:



But is that treating self-harm per se, or self harm as a manifestation of catatonia? One is a novel indication, the other isn't.
 
I agree, it’s a good outcome. Just the way things have been going I thought there would be more of a fuss.


TMS is harder to obtain around here than ECT. We have TMS but at this point it’s research patients only.
By not unexpected, what I mean is that so often when a patient is engaging in blatantly manipulative behavior, the fear of what they'll do if you don't give in far, far, far outweighs the actual risk of said bad outcome. It is far more likely that if you set a strong boundary the patient, in the face of their behavior not working, will stop. Which is exactly what happened from your description. These patients are searching for weakness and when they find it they increase their behavior; when it's not rewarded they don't waste their energy.

My most recent example of this was a factitious patient who was threatening holy hell if we didn't remove the 1:1. Primary team was starting to contort themselves trying to figure out what to do. I marched into the room with them and calmly informed the patient the 1:1 was staying because we cared about them and wanted to give them the best care possible and this was not going to be optional. Pt put up a token verbal protest, but there were no more histrionics after that.
 
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By not unexpected, what I mean is that so often when a patient is engaging in blatantly manipulative behavior, the fear of what they'll do if you don't give in far, far, far outweighs the actual risk of said bad outcome. It is far more likely that if you set a strong boundary the patient, in the face of their behavior not working, will stop. Which is exactly what happened from your description. These patients are searching for weakness and when they find it they increase their behavior; when it's not rewarded they don't waste their energy.

My most recent example of this was a factitious patient who was threatening holy hell if we didn't remove the 1:1. Primary team was starting to contort themselves trying to figure out what to do. I marched into the room with them and calmly informed the patient the 1:1 was staying because we cared about them and wanted to give them the best care possible and this was not going to be optional. Pt put up a token verbal protest, but there were no more histrionics after that.
Firm boundary means safety. Patients might initially tantrum a bit, but often adjust to the boundary quickly and we can all move on. Saying no is not easy, but that is what our patients often need to hear. Especially important when it comes from the nice doctor who understands them and not whoever is the hard-ass on the unit. See treatment for integrating split objects from Kernberg.
 
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