Pulling rank

[Manhattanite]

Here's my vent of the week...

I find myself being sensitive to some things that in the past would not have bothered me. I don't know if it is the sleep deprivation, the worrying or whatnot, but listen to my story.

My sister in law has been very supportive throughout my PALS illness. If anything she has been overly optimistic and somewhat in denial about the reality of his condition, with me always chiming in as the voice of reason or having to say "no" when she has wanted to do some things that I know would weaken my PALS.

But my complaint is not so much about her but about the people surrounding us. Whenever we go to doctor visits, the neuro seems to address her as the primary caretaker, although I am the husband and the person who takes care of my PALS at home. Although I am very outspoken in the meetings, when questions about his medications or nutrition or condition come up, the neuro asks my SIL who then defers to me. This has happened time and time again.

My PALS has a psychotherapist who comes to the house to see him every two weeks. She also happens to be my SIL's therapist and she comes because my SIL pays for the consultations. Well, it turns out that the therapist talks to my SIL about issues related to my PALS, including her thoughts on what medications he should be taking, whether he should be traveling, what she thinks of the neuro's opinions, whether we have a DNR order, etc. etc.

Then today my SIL texts me that our next door neighbor texted her that my PALS was in a great mood today.

And my issue is this: I am the legal HUSBAND, the person who my PALS designated as his primary healthcare proxy, the person who spends every morning, night and weekend at home with him, the person who cleans him when he has an accident in his pants, the person who bathes him on weekends, the person who manages his enteral feeding, the person who has to deal with the bureaucracy of hospice and home aide workers, etc. And when opinions are given by healthcare professionals I think I should be part of that conversation and I should be addressed as the primary caregiver. It really annoys me and I don't know what it is -- gender bias (e.g., men are not as good caretakers as women), the fact that she is 10 years older than me, or some issue with same sex couples?

My dad suffered from Parkinson's and at no point do I ever remember someone approaching my aunt instead of my mom to discuss his care.

I don't know if I am right in feeling this way. After all the goal is what is best for my PALS. I sound possessive of my PALS and like I'm pulling rank or trying to control something.

And part of my frustration is that I cannot discuss it with my PALS - topics like this seem to be beyond his grasp now because of frontal lobe issues. So it also makes me feel somewhat alone - he so used to be my sounding board. Talk about grieving.

Anyway, I just wanted to vent. I hate feeling this way and even though I am not the one with ALS it begs the question "is it the disease or is it me?"

 

[affected]

Do you think you can approach anyone doing this, quietly and alone and just state that you are the primary caregiver and hold all legals and that everything concerning your PALS must go through you?

I think you have every right to feel the way you do. It is also very important because if there were any kind of emergency that is not the time to have it blow up!

I totally get it that you shouldn't have to do this, but I think you need to.

 

[Manhattanite]

Tillie you totally get it - I feel that I shouldn't have to do this and that it's yet another thing to add to the list of things to do, but yes I need to do it and confront people - politely of course. I greet the therapist when she comes to the apartment so I will address it then. She's very opinionated and I don't usually agree with her so perhaps she senses that and that's why she goes to my SIL who is more affable.
I am definitely being pushed out of my comfort zone by living through this experience.

 

[affected]

There are no comfort zones with ALS

But you do need to add this to your list, deal with it and cross it off again quick xx

I'm sorry you have to go through all the BS on top of being a CALS and watching the person you love deal with this disease. Especially when your PALS has cognitive decline and isn't truly aware it's happening to you.

 

[ShiftKicker]

With regards to the therapist and SIL communication-

There are professional standards that appear to not be followed here. Regardless of who is paying, the therapist is breaking confidentiality and consent rules- a very serious breach, I might add. This is absolutely not ok and may even be actionable. I do not know what professional association she is a member of, but it might be interesting to contact the association to get a written copy of their professional standards to see if she is violating them, or at least let her know that there is an ethics/standards issue with regards to her conduct.

I have experienced being ignored as a patient while seeing a specialist. I have also been the person a specialist insists on talking to instead of their actual patient (my mother). It's incredibly frustrating and disempowers the patient or caregiver and compromises the relationship of trust one is supposed to have with people providing you or a loved one with medical care. I am so sorry you have to address this issue. It's yet one more frustration piled up on top of the already grinding daily life of a caregiver. It is absolutely unfair.

Tillie's advice to communicate and clarify your position either in person or in writing is spot on. It kind of sounds like your SIL is intrusive and does not have awareness of boundaries. She is doing everyone a disservice to assume the "role" of primary caregiver and muscling your husband's actual caregiver (you!) out of the picture. While it sounds like she's not going to stop on her own, making sure the doctor speaks to you instead of responding to her intrusive presence is important. Again, there could be professional repercussions for a medical specialist to ignore the primary caregiver in favour of the loudest person in the room.

 

[Ceelea]

Manhattanite -

You absolutely have every right to be concerned about the ethics of the professionals who are providing information to 3rd parties about your PALS. You are next of kin and, unless your PALS gave a power of attorney to your SIL (or someone else), they are violating their professional ethics to discuss his care with anyone else. A softly spoken, gentle question about the HIPAA rules regarding the proper sharing of information goes a very long way in addressing professionals who overshare without creating any confrontation. (As a lawyer and a caregiver, I make every effort to be non-threatening to the medical professionals working with my PALS or in my own medical care, for that matter - unless it is very, very necessary to do otherwise.)

- cee

 

[lgelb]

No doubt, some HCPs are more comfortable addressing family members of a particular gender and/or age.

You have every right, as per other comments, to make clear your role and ask that it be respected both in terms of primary interaction and following confidentiality policies/privacy laws. If you do it firmly, e.g.: "I view sharing PHI with unauthorized third parties as the HIPAA violation that it is" and "As the legal spouse and primary caregiver, I expect to be treated as such"...you should not have to do it twice.

Best,
Laurie

 

[affected]

Cee I really agree that softly spoken and non-threatening is important. Now we shouldn't be agressive anyway, but it's important as we need to be sure that our PALS receives great quality care and this isn't compromised by getting up their noses (so to speak).

Often a quite word on the side is all that is needed anyway.

Manhattanite please do let us know how you go

 

[lgelb]

Tillie, I don't know the culture in Australia well, but I can sadly report that in the States, sometimes [controlled] aggression is the only way to be heard.

Best,
Laurie

 

[affected]

While that can be true anywhere Laurie, I don't think starting with aggression is advisable. If taking the kind of approach Cee (as a lawyer) recommends seems the right way to start and see if that gets the result desired before ramping it up.

 

[gooseberry]

I would contact your spouses doctors and provide them with documentation that you are legally his guardian. I would discuss in the note that you are or are not comfortable with someone else being privy to patient doctor conversations.

I would ask for a new therapist. If the only choice is the unprofessional one, I would ask your pals if it is really needed.

 

[Lixen]

I won't address the therapist issue directly because I don't know the legalities and/or if your PALS has given her permission to discuss his medical status with his biological family.
‎
Aside from that, do you have a right to feel the way you do? Sure. Is it fair to have to deal with professionals who are dismissive of you, intentionally or otherwise? No. Does it mean someone is gender biased, bigoted, homophobic, etc? No, not in my opinion.

As Laurie said, some people are just more comfortable addressing a certain sex for whatever reason, I think it's more a matter of what people are primarily exposed to. Traditionally speaking, the family unit has been one of a man and a woman. How we address people is a product of that experience and is often subconscious. I think those involved in your situation are completely clueless as to their behavior and would be shocked to know how it's affected you.‎
‎
But aside from their lack of addressing you directly, is there something you are being denied with respect to being your PALS spouse, executor and caretaker? It seems to me you still retain legal control over that process? ‎

I can appreciate a good rant and you are always entitled to one as far as I'm concerned. More importantly though, I think their behavior isn't your problem and you should try to not let it affect you so deeply. You have enough on your plate but if you bring it up I would try a gentle reminder before taking a stern approach. Is it worth bringing it up and making it super awkward for however long? Only you can answer that. We can't control other people, only how we react to them. As long as you are able to make decisions as his legal spouse, I'd try not to let the fact a HCP made eye contact with his sister instead of you affect you. ‎

The real story, I think, is we CALS are powerless to change or alter the course for our PALS. It's only human nature to try to grasp for some semblance of control as things continue to progress. ‎

 

[Atsugi]

When the issue is as important as ALS, I get real serious, real fast.

I once told the hospice chaplain, "You're repeating yourself. We don't have time for that." I decided that no one was going to waste my time or my PALS time.

I vote for a simple, "I am the husband. From now on, the doctor needs to speak only to me."

You might lose some relationships. But in my mind, there is only one relationship that matters: PALS/CALS.

Others will disagree, maybe a lot. And they're right--for them.

 

[jfaidley]

Would it be completely unthinkable to go to medical appointments without the SIL? Perhaps your husband wants her to be there? Not trying to be insensitive -- as we cope with my husband's ALS, I have definitely appreciated the "it takes a village" concept and am grateful when others jump in. So I appreciate that you may be balancing the upside of a loving and concerned family member with the downside of her intrusiveness. And your husband has a good relationship with his sister, obviously going to war with her or excluding her totally does not serve his best interests. But just a thought.

Also a comment re: HIPAA (as a hospice nurse). If the patient is capable of independent decision-making, it is not a violation of HIPAA to discuss PHI with others in line with the patient's expressed wishes. Even the existence of a health care proxy does not mean that information cannot be shared with non-agent friends and family, if that is what the patient desires. The proxy confers the right to make decisions if the patient is unable -- it does not limit the sharing of PHI. Of course, best practice is to have this conversation with the patient ("I see you have many involved family members. With whom may we share information? Who should be the primary point of contact if you are unable to reach out yourself?") and to document the results in the chart. That sort of appropriate diligence is sadly rare in our health care system. In this case, if your husband welcomed his sister's involvement prior to his cognitive compromise, it is not a HIPAA violation for staff to continue to share information with her. That said, there is so much misunderstanding of HIPAA among health care staff, and it is such a complex issue, that most institutions use the simple "err on the side of caution" approach. So making that accusation -- baseless or not -- may be strategically productive.

I hope I don't seem to be invalidating your reasonable frustration -- I only wonder if approaching it from the HIPAA perspective is the best choice. It seems to me you are facing the usual, bull-in-a-china-shop management of complex family dynamics, probably combined with a good dose of lazy "she's a woman so she's the caregiver" thinking. Ideally, if your husband is able to instruct the staff that you are his primary caregiver and should be the point person for information sharing, that trumps everything and WOULD make future, unauthorized sharing with the SIL a HIPAA violation. But seems he might not be capable of this. If not, I would suggest a private meeting with the clinic staff, especially the social worker, to express that you are the husband, primary caregiver, and health care agent (this role does support your primacy as a decision-maker, and will carry weight with the staff) and feel that your position is not being respected during visits. You might also go at it from a practical perspective: "As my husband declines and care gets more complex, it is becoming confusing to have fragmented involvement. Although his sister is important to him and may continue to be involved, please channel communications through me." Then you could communicate this same thing to your SIL, or perhaps call a meeting that includes her in order to set down the ground rules going forward.

Last, as a fellow Manhattanite (soon to be submitting a request for info on patient lifts for teensy apartments!), I highly recommend the ALS Association as additional support. They will have a liaison assigned to your husband's clinic (if it is an ALS/MDA clinic) who can probably help. I have had ongoing dissatisfaction with the insensitive care and lack of responsiveness at our ALS clinic (before I was linked up with the Association), and they have made it clear that they will advocate on my behalf if needed. So might be worth reaching out to them first with your concerns to see if they would be part of the meeting.

Best of luck sorting all of this out!

 

[lgelb]

The idea of broaching HIPAA, assuming said PHI transmission is in fact unauthorized, as I noted, is that this really does need to be addressed to avoid a later crisis. It's not about avoiding hurt feelings as avoiding a situation in which the PALS' /CALS'-as-proxy wishes are not respected.

You'll find, J, that many of us ultimately accepted less contact rather than counterproductive contact with various family members/friends -- that is one of the sequelae of ALS.

That said, agree that switching clinicians would be the ideal, as we should always "vote with our appointments" -- that's one of the ways how the riffraff is de-incentivized, to be blunt.

While a social worker will likely empathize and say the right things, that person is not necessarily in a position of authority on the clinical team, where care actually occurs.

Manhattan, we have not suggested mutually exclusive approaches, so hopefully you have at least affirmed that you are in the right and have some options as to how to deal. If you've the stomach for it, nothing wrong in starting kinder/gentler and moving in stronger directions if/as needed. If you don't, nothing wrong with drawing lines as I'd imagine your husband would do for you.

Best,
Laurie