Capacity question

[Wardles888]

New attending here. I was taught in residency that when a patient lacks capacity, we go to next of kin in the event of a medical emergency. Found recent literature that shows that we go to next of kin in non emergent situations too, ie refusing cancer treatment. What are your practices in lack of capacity for non emergent treatment

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[Bartelby]

For any patient who lacks decision making capacity I try to contact the next of kin to obtain informed consent from them. You have to check your state laws, it is likely the next of kin cannot authorize treatment over the patient’s objection if the patient is refusing care. It then becomes a question of what legal options for appointing a surrogate decision maker exist (for non emergent issues).

 

[Alemo]

I think the first step before considering substituted judgment is to consider if the person has expressed their wishes about the situation in the past. If not, only then would you go to next of kin (who this is and the associated hierarchy varies by state). Typically that person is asked what they think the patient themselves would want to do. If that is exhausted, then the decision itself is substituted (I.e the next of kin actually makes the decision).

Of course standard capacity relativity rules apply (very coarsely, small easy decisions can be made with only the faintest elements of 4 pillars of capacity whereas serious life changing decisions (refusing life saving treatment) require someone to demonstrate very fully that they lack capacity before the decision would be substituted).

Everyone is generally assumed to have capacity and the lack of capacity must be demonstrated.

 

[splik]

New attending here. I was taught in residency that when a patient lacks capacity, we go to next of kin in the event of a medical emergency. Found recent literature that shows that we go to next of kin in non emergent situations too, ie refusing cancer treatment. What are your practices in lack of capacity for non emergent treatment

This is somewhat going to be state dependent, but usually in non-emergent situations where you are talking about ongoing care and ongoing incompetency, a judge would have to make that determination. Pragmatically, we do not treat cancer patients who are refusing such treatment. There is a difference between being able to CONSENT to a procedure vs being able to ASSENT to it. If the patient is unable to consent, but would otherwise go along with it they you may be able to rely on a surrogate decision maker. If they are actively resisting said treatment, no one in their right mind is going to offer chemotherapy, radiation treatment, or surgery to said patient regardless of what the next of kin says.

 

[wolfvgang22]

I'm having a nightmare scenario right now with a 67 year old patient with Schizophrenia and severe dementia who lacks capacity to make medical, psychiatric, or financial decisions per my evaluations, and two neurocognitive testing reports by psychologists. Patient has fallen and suffered multiple fractures, and doesn't manage their type 2 diabetes or other health conditions at all due to lack of capacity. In fact, patient was recently in the hospital for hyperglycemia, nausea, and vomiting, but was discharged without insulin because the patient won't check their own blood sugar, won't take insulin properly, and refuses home health assistance. The patient won't take any medications at all, due to lack of capacity - patient doesn't have insight. There is no next of kin, no one at all that wants to be involved with the patient. We filed multiple reports with Adult Protective Services and requested evaluation for state guardianship.

The APS worker repeatedly says the patient looks ok to them, and recommends against guardianship. Basically, the patient, like many dementia patients, can "get along" with basic social interaction but has no idea what is going on and has no short term memory. I think the APS worker is naive, and lazy. So, APS refuses to present the case to the county judge. This has gone on for over 2 years. Meanwhile the patient gradually worsens. Thing is, the patient can easily get a bed in a LTC facility, but refuses because they lack capacity. No one, including me, knows what to do now, since APS have abdicated their responsibilities. I'm open to suggestions!

 

[splik]

I'm having a nightmare scenario right now with a 67 year old patient with Schizophrenia and severe dementia who lacks capacity to make medical, psychiatric, or financial decisions per my evaluations, and two neurocognitive testing reports by psychologists. Patient has fallen and suffered multiple fractures, and doesn't manage their type 2 diabetes or other health conditions at all due to lack of capacity. In fact, patient was recently in the hospital for hyperglycemia, nausea, and vomiting, but was discharged without insulin because the patient won't check their own blood sugar, won't take insulin properly, and refuses home health assistance. The patient won't take any medications at all, due to lack of capacity - patient doesn't have insight. There is no next of kin, no one at all that wants to be involved with the patient. We filed multiple reports with Adult Protective Services and requested evaluation for state guardianship.

The APS worker repeatedly says the patient looks ok to them, and recommends against guardianship. Basically, the patient, like many dementia patients, can "get along" with basic social interaction but has no idea what is going on and has no short term memory. I think the APS worker is naive, and lazy. So, APS refuses to present the case to the county judge. This has gone on for over 2 years. Meanwhile the patient gradually worsens. Thing is, the patient can easily get a bed in a LTC facility, but refuses because they lack capacity. No one, including me, knows what to do now, since APS have abdicated their responsibilities. I'm open to suggestions!

That is really terrible. If you're still in texas maybe DFPS is too busy trying to prosecute parents of trans kids. But you can always appeal and in fact from a good practice and liability standpoint, always should. First you appeal to the Director of Provider Investigations ([email protected]), and if they continue to be unhelpful you can go to the state OIG, or to the Civil Rights Office (since this pt who is presumably a veteran lacks capacity, they are violating his civil rights by preventing a guardian being appointed for him). You can also appeal to the APS state office, or to the DFPS commissioner. And this should not just fall on you, but be escalated in your own workplace so hopefully SW leadership can assist.

 

[wolfvgang22]

That is really terrible. If you're still in texas maybe DFPS is too busy trying to prosecute parents of trans kids. But you can always appeal and in fact from a good practice and liability standpoint, always should. First you appeal to the Director of Provider Investigations ([email protected]), and if they continue to be unhelpful you can go to the state OIG, or to the Civil Rights Office (since this pt who is presumably a veteran lacks capacity, they are violating his civil rights by preventing a guardian being appointed for him). You can also appeal to the APS state office, or to the DFPS commissioner. And this should not just fall on you, but be escalated in your own workplace so hopefully SW leadership can assist.

Thanks!
Yeah, the lead social worker has already requested an appeal which will supposedly happen, but I'm not confident anything will change. In fact, APS and the DPI indicated without outright saying it that an appeal probably won't matter. We had a meeting with the DPI, APS, staff, our social workers, and the home health that tried to assist the patient. The meeting went nowhere - my team saying this patient is going to worsen and eventually die without a guardian and long-term nursing care because the patient lacks capacity, and the APS team disagreeing with the thorough evaluations and saying "the patient says he's fine and he looks ok" with nothing to back it up other than the naive/lazy APS social worker's opinion. I think they are pretty much directed to do nothing if possible. They asked our social workers to find services in the community to provide the care a long term care facility would do 24/7. So the meeting ended up in a stalemate, as 24/7 nursing community care doesn't exist.

I appreciate the suggestions of next going to the OIG and Civil Rights Office! I may also look into getting our congress person involved. Doing these things is going to cause an unholy ****storm for rocking the boat and eat up my already limited clinic time, and I'm certain it's all going to get blamed on me somehow. My facility leadership is basically MIA or doesn't know what to do either. I'm probably going to give them a heads up and say "I'm about to go to OIG, let's get our ducks in a row" to get their attention, if that is possible. It's extremely frustrating and worrying.

 

[deleted1100659]

I'm having a nightmare scenario right now with a 67 year old patient with Schizophrenia and severe dementia who lacks capacity to make medical, psychiatric, or financial decisions per my evaluations, and two neurocognitive testing reports by psychologists. Patient has fallen and suffered multiple fractures, and doesn't manage their type 2 diabetes or other health conditions at all due to lack of capacity. In fact, patient was recently in the hospital for hyperglycemia, nausea, and vomiting, but was discharged without insulin because the patient won't check their own blood sugar, won't take insulin properly, and refuses home health assistance. The patient won't take any medications at all, due to lack of capacity - patient doesn't have insight. There is no next of kin, no one at all that wants to be involved with the patient. We filed multiple reports with Adult Protective Services and requested evaluation for state guardianship.

The APS worker repeatedly says the patient looks ok to them, and recommends against guardianship. Basically, the patient, like many dementia patients, can "get along" with basic social interaction but has no idea what is going on and has no short term memory. I think the APS worker is naive, and lazy. So, APS refuses to present the case to the county judge. This has gone on for over 2 years. Meanwhile the patient gradually worsens. Thing is, the patient can easily get a bed in a LTC facility, but refuses because they lack capacity. No one, including me, knows what to do now, since APS have abdicated their responsibilities. I'm open to suggestions!

maybe this has been different for others but in my experience APS has not been effective whenever I got them involved.

Where were they living at previously? Like you said, most long term facilities are a pipe dream. However, maybe a personal care home run by a third party? Those are often around 800 or so a month and the PCH worker checks blood sugar, takes to appts, etc. The PCH can be made the payee, im assuming this pt qualifies for disability, medicare, etc. I would get as many financial resources as possible, and look towards PCH situation where someone will do med management/take him to appts. In my state, we have PCHs and we have some facilities for moderate-severe ID patietns with comorbid psych diagnosis that are funded by state that work similiar way as PCH. We have a DD clinic outpatient as well here which i seem to be slowly inheriting somehow..

 

[wolfvgang22]

maybe this has been different for others but in my experience APS has not been effective whenever I got them involved.

Where were they living at previously? Like you said, most long term facilities are a pipe dream. However, maybe a personal care home run by a third party? Those are often around 800 or so a month and the PCH worker checks blood sugar, takes to appts, etc. The PCH can be made the payee, im assuming this pt qualifies for disability, medicare, etc. I would get as many financial resources as possible, and look towards PCH situation where someone will do med management/take him to appts. In my state, we have PCHs and we have some facilities for moderate-severe ID patietns with comorbid psych diagnosis that are funded by state that work similiar way as PCH. We have a DD clinic outpatient as well here which i seem to be slowly inheriting somehow..

Lol, I feel you, I also inherited a DD clinic.

Thanks for your suggestion! The patient lives at home. The patient allows transients to use the patient's home as a drug den/flop house, too, something the patient has always done but is now at risk of exploitation.

APS did mention the group home idea, but there isn't much availability around here from what I'm told. To further complicate matters, this patient has sex offender status from many years ago. The patient doesn't remember why, and the patient isn't a danger to anyone for the several years I've known the patient. But the result is group homes don't want the patient. And since this patient refuses care anyways due to lack of insight and capacity, that seems to suit everyone but the patient and his treatment team just fine. The patient also can't be placed anywhere without a guardian, as the patient just gives a blank look and says "I'm fine" to any question. I'm going to have to escalate and get more social work help, because the 4 SW on my team haven't been able to make any progress.

 

[Stagg737]

Thanks!
Yeah, the lead social worker has already requested an appeal which will supposedly happen, but I'm not confident anything will change. In fact, APS and the DPI indicated without outright saying it that an appeal probably won't matter. We had a meeting with the DPI, APS, staff, our social workers, and the home health that tried to assist the patient. The meeting went nowhere - my team saying this patient is going to worsen and eventually die without a guardian and long-term nursing care because the patient lacks capacity, and the APS team disagreeing with the thorough evaluations and saying "the patient says he's fine and he looks ok" with nothing to back it up other than the naive/lazy APS social worker's opinion. I think they are pretty much directed to do nothing if possible. They asked our social workers to find services in the community to provide the care a long term care facility would do 24/7. So the meeting ended up in a stalemate, as 24/7 nursing community care doesn't exist.

I appreciate the suggestions of next going to the OIG and Civil Rights Office! I may also look into getting our congress person involved. Doing these things is going to cause an unholy ****storm for rocking the boat and eat up my already limited clinic time, and I'm certain it's all going to get blamed on me somehow. My facility leadership is basically MIA or doesn't know what to do either. I'm probably going to give them a heads up and say "I'm about to go to OIG, let's get our ducks in a row" to get their attention, if that is possible. It's extremely frustrating and worrying.

You’re at a VA right? How are the medical teams justifying discharging this individual who is refusing to take meds and clearly has multiple episodes of non-compliance leading to deteriorating medical condition? This patient would literally just live at our VA due to the ongoing profound lack of self-care…

 

[wolfvgang22]

You’re at a VA right? How are the medical teams justifying discharging this individual who is refusing to take meds and clearly has multiple episodes of non-compliance leading to deteriorating medical condition? This patient would literally just live at our VA due to the ongoing profound lack of self-care…

That's a good question for the inpatient hospitalitist. I indeed had hoped they wouldn't discharge my clinic patient home when the patient would inevitably be hospitalized due to uncontrolled diabetes.

The patient was indeed hospitalized several weeks ago for nausea and vomiting related to uncontrolled diabetes. Unfortunately, no one told me my outpatient was hospitalized. They stabilized the patient, then discharged the patient with no insulin because the patient cannot monitor blood sugar or take the insulin due to lack of insight and didn't consult us.

EDIT: I'm wrong, they did consult us. My department chief told the inpatient team on my day off that the patient lacks capacity and cited the TWO psychological testing consults stating that. So now I'm going to ask them to address this issue so they don't discharge patients like this again. Hopefully.