Aging Answers - Episode 9 Healthcare Advocacy with Dr. Gerda Maissel Transcript - Norris McLaughlin, P.A., Attorneys at Law

Episode 8: Healthcare Advocacy with Dr. Gerda Maissel Transcript

Shana Siegel: Welcome to Norris McLaughlin’s Aging Answers, a limited podcast series discussing key topics of elder law planning and long-term care. I’m your host Shana Siegel, practice group leader of the Elder Law Group at Norris McLaughlin. In this episode, I’m joined by Dr. Gerda Maissel to talk about healthcare advocacy. Hi Dr. Maissel, how are you?

Dr. Gerda Maissel: Hi. I am fine. How are you doing today?

Shana Siegel: Wonderful. So, I have been really interested in speaking to you since I first met you and when we first met, you talked about your services as a cross between a concierge doctor and a geriatric care manager. Can you talk about a little bit about what you do and how it differs from those roles?

Dr. Gerda Maissel: Sure. Thanks for the question. So, a concierge physician is a special physician where you either privately pay entirely, or you pay a little extra for, and that physician gives you lots of time. They advise. They coordinate. Sometimes they’re available 24/7. And so, all of those pieces are similar. And a geriatric care manager is an aging life specialist, and they make sure that a person with an illness or just an older person’s needs are being met. Um, and they often work to help keep people at home. They might advise on a type of home services. Someone needs like aides or nurses, and they have a. a good, uh, local knowledge. And that’s partially true with me, but the other parts are similar. Where I’m different is although I’m a physician, I’m not working as the person’s doctor. Doctors, if you’re in a doctor-patient relationship, that doctor prescribes, diagnoses, orders durable equipment. I don’t do that. I’m not the person’s doctor. What I do though is I coordinate care, I speak with doctors, and I speak the language of doctors. I am available 24/7 and I help improve the relationships with the person’s doctors. Unlike a geriatric care manager who is local, I’m national. I do have a lot of local contacts in the greater New York area, but let’s say somebody needs an aid service in Wisconsin, I’m not going to have local contacts. So similar and different.

Shana Siegel: Got it. Can you talk about hospital care and why it can be really hard to get the best care in a hospital setting?

Dr. Gerda Maissel: So, hospital care has become really frustrating for some people. What has changed is burnout and physician and nurse shortage. With the pandemic, there was a lot of physician retirement and a tremendous amount of nursing turnover. And on the physician side, when you’re in the hospital now, it’s not your primary care doctor, that family doc that you know and love that takes care of you. It’s going to be a hospitalist. And that hospitalist, we used to have hospitalists on 7 or 10 days straight. Now, because of the shortage, you may get a weekend doc, somebody there for 2 days, 3 days. You’re unlikely to get 7 or 10 days. So, you’re constantly dealing with the doc of the day. Constantly reinventing things. And the doctors, because they don’t know you, are working from check off lists. And there’s no context. Who is that human being in the bed? And what matters to them and their family? And that can get very frustrating for families.

Shana Siegel: Sure, it sounds like it. And it sounds like that would be a place where you’d be really helpful.

Dr. Gerda Maissel: Yeah, well, I speak doctor, as I mentioned. And I can often tell the doctor in two sentences what it might take them half an hour to get from the family. Because I know what the doctor needs to know. And I know what the family wants that doctor to address.

Shana Siegel: Got it. I’ve had a number of clients with paralysis who wanted to return home after they were done with rehab. From our prior conversations, that this is a real passion of yours. How do you help clients with setting up their home so that they can return home?

Dr. Gerda Maissel: Well, when people have paralysis, going home can be a big deal. They may have to completely arrange the home setup in terms of where the person stays. They may not be able to get up the stairs anymore. They may need different types of bathroom access. So, I can help them, you know, just figure out some of the practical things. I also help them figure out what kind of support in the home they need, what it actually means for the family. So, if someone goes home, let’s say they’re a quadriplegic, and now they’re on a bowel routine. Well, the family’s got to decide, are they going to do the bowel routine or are they going to hire someone to do it? And then what kind of someone does that type of care? I also help them think through, well, you also need to think about transportation. We need to think about medical care and what that might look like. And then one of the things that I do that’s a little bit different because I have a background in spinal cord injury and head injury, I teach people about the common complications that can come up. And then I help them understand what can be done to prevent them. And I help them understand where to go for help. So, for example, a loved one has spasticity. Well, I know and can direct them to the right kinds of doctors that can recognize and treat the spasticity. And I can prepare the family. For what the options are and help them get to the right individual physician, as well as things like bladder issues, which are frequently, you know, whether you’ve got paralysis or not frequently an issue. Again, I don’t diagnose, but I help them understand the spectrum of things that it could be and get the care from the right kinds of doctors or nurses so that, you know, They’re not spending hours and hours and hours in frustration going, you know, going in circles trying to go to the right place.

Shana Siegel: Yeah, I know wound care is also a huge issue with this population.

Dr. Gerda Maissel: You’re 100 percent right. You’re so good to bring that up because I tell folks with spinal cord injury all the time that it is often in the end the skin, the wound that becomes the thing that takes a person out of this world. Not the paralysis itself.

Shana Siegel: Yeah. So, I know you also advocate for clients in long-term care sittings. But, you know, all families aren’t going to be able to work with you. So, what would you tell loved ones and caregivers that they should be watching out for advocating for their families who are in long term care facilities?

Dr. Gerda Maissel: A couple of things to know, sort of from a basic level, which is, Sometimes you get this cast of characters and everybody seems interchangeable and you’re not sure who’s who. So, one of the things to do is to sort out in your mind who’s from nursing, Who’s from medical and it might be a name that sounds like a nurse, like a nurse practitioner, but they might be representing the medical side and then rehabilitation. So, sort out what the different people are that are coming to take care of your loved one and what they do because they each have their own hierarchy. It’s not like. The physical therapist reports to the physician. The physical therapist reports to the rehab manager. And same thing with the nurses and the aides. They report up through nursing. And because they’re in silos, rehabs, and long-term care are all setup, and hospitals too, with these silos, don’t assume that they’re all communicating with each other. Behind the scenes, they may have their own politics, their own barriers, and One of the things that family who are paying close attention and advocating closely often end up doing is a bit of messaging, you know, trying to advocate. Well, the occupational therapist would like dad on a toileting program, which means that he has to be put on the toilet every three hours while awake. Well, OT may not really, may be frustrated with nursing and may just sort of like suggest if it may not get anywhere. So, then you’ve got to go to nursing and try to say, you know, how can we solve this? How can we make this happen? Um, so don’t assume that everybody on the team is communicating with each other. You may have to sort out the who’s who and do some of that communication yourself.

Shana Siegel: How would a family know when it’s a real red flag when they really need to think about moving their loved one to another facility?

Dr. Gerda Maissel: Well, that’s a great question. And sometimes you smell it, you know it, you see it, you come in and we’ll pick on dad because we mentioned dad before. And dad is still in bed at two in the afternoon with the shades down. Dad’s developed a bed sore. Dad just seems miserable and unhappy. And when you try to ask what’s been going on, you don’t get a straight answer, or you find funky bruises when you look at Dad. Or Dad is constantly being sent to the emergency room for no particular reason. I mean, just a client I had this past weekend, and this wasn’t a bad facility, but on a Saturday morning, they called the wife and said, Oh. He has blood in his urine. We want to send him to the emergency room. And this was a 98-year-old gentleman with advanced Alzheimer’s. And his wife called me and said, you think we should send him to the emergency room? I said, Well, you’ve already decided that if he gets other conditions, you’re not going to treat them. So, if god forbid, he has a bladder cancer, you just want to make him comfortable. So, what we want to tell the nurses is, Let’s make sure he’s emptying his bladder. Let’s give him some extra fluids just to kind of move things through and let’s, you know, just check on him to make sure that he’s not developing any fevers or problems and keep him out of a busy city emergency room on a Saturday when this poor man with advanced Alzheimer’s would end up having a terrible time. And then the next day the blood had stopped and we saved him a trip to the ER. But the wife just didn’t know, you know, what to do. And that was, that’s not a great example of bad care. But if they had insisted send him to the emergency room no matter what, then I’d be concerned.

Shana Siegel: Right, no, that’s great. I see families struggling with new diagnoses of dementia all the time, especially when it’s a non-traditional presentation of dementia. What advice would you give families who have these new diagnoses?

Dr. Gerda Maissel: One thing is to keep in mind that just because at this point early, and I’m assuming it’s an early moment in time, the diagnosis isn’t clear, and I’m going to say double negative. That doesn’t mean it’s a bad doctor. So, in other words, dementias can look very similar, and there’s half a dozen different types of dementia. And in the beginning. They often have overlapping symptoms, and then as time passes, certain symptoms come to the forefront, whether it’s developing a language problem or certain types of hallucinations or various, you know, there’s many different symptoms that we start to use as doctors to sort out the different types of dementia. So, in other words, sometimes you just have to give it a little bit of time and see what happens along with a doctor should do a basic workup. To rule out the treatable causes. Certain infectious diseases, certain hormonal problems, even anemia. Certain medical things can present like dementia, but they’re completely fixable. So, you should always have a doctor who, you know, check the treatable things up front.

Shana Siegel: Yeah, that’s a really good point. I’ve had, I’ve seen clients where they say, Oh, well, you know, they were diagnosed with dementia, but they were fixed. Fine. You know, a week ago. It’s like no dementia doesn’t come on like that. But you see that again in the hospital.

Dr. Gerda Maissel: Right. That’s the common confusion with delirium. Delirium is a temporary state and older people are more prone to being becoming delirious. And when they’re delirious, it can be really frightening. And it frequently happens in the hospital. Because we’re giving them drugs, they’re out of their routine, their sleep cycles are messed up, they’re sick. There’s so many reasons why a person can be delirious, but that does not equal dementia.

Shana Siegel: Yeah. No, that’s important. How can consumers improve their communication with their health care providers?

Dr. Gerda Maissel: So, and some people will say, well, I shouldn’t have to figure this out, but I’m going to say figure out how this doctor’s communication works. And your basic options are, and I’m talking about just messaging communication. I don’t know if you meant something else, but for getting information back and forth. Sometimes doctors like portal messages. Some people want you to call them. Some people want you to make an appointment and see them in person. Some people will do a tele-visit and have an understanding of kind of what happens. So, in some cases, in many cases, these days, the portal messages, which are the messages, you know, we all have these healthcare portals go in the portal messages are often seen first by a nurse or even a non-nurse who screens them. So be aware of that. And. That might be just fine. And some doctors will give you almost no information without an appointment. So, in the fee-for-service world, if a doctor answers a message in the portal, they don’t get paid anything. But if they do a tela visit or an in-person visit, they get paid. And it’s not just that they themselves are trying to put money in their pocket.

So many doctors are employed now, and they have productivity standards. So, they are expected to generate a certain amount of productivity every day, and it doesn’t count if they just answer a message. So, that’s an indirect way of saying, understand how the system works a little bit, and what motivates your particular provider, and then decide if you can live with it.

Shana Siegel: Yeah, that’s great, great advice.

Dr. Gerda Maissel: There’s other kinds of communication that I can also just mention, which is when you go into When you’re in an appointment with your doctor, [00:14:00] try to go in prepared with what it is that you want out of this appointment. You know, when I was a practicing physician, I would say, Oh, so you know what brings you in today? Or, and some patients would say, I don’t know. I don’t know why I’m here. You said, come back. Well, okay, sure. I can guess as to what’s important to you. But if you as the patient or the patient’s advocate can say, Oh, we’re here today. Because last time we were here, X happened and we have Y question. You’re going to focus that doctor down on what you want out of the appointment. Because in my opinion, we’re consumers as patients, as spouses, as daughters, as sons. We’re the consumer. We’re buying the medical service. And we ought to drive the conversation around what we want from the appointment.

Shana Siegel: Sure, that’s especially important when you only have a 10 or 15-minute time with the doctor.

Dr. Gerda Maissel: Exactly.

Shana Siegel: How do families know when they really need someone like you to help them navigate?

Dr. Gerda Maissel: So, believe it or not, I don’t think the answer is about the complexity of the, you know, the exact complexity. Like every time you have condition X,

Shana Siegel: Right.

Dr. Gerda Maissel: You need me. No, I actually think it’s more about your family, the person’s family, their persons, how busy they are, and how they feel. And so when most people call me, there are a couple of things going on. They often are frustrated. They’re not sure who to trust. They don’t know if this is a good doctor or not a good doctor or a set of doctors. They may be getting contradictory information and they’re confused and overwhelmed by it. Or sometimes they’re frustrated because Mom is taking Dad to the doctor, but what she comes back with makes no sense. And they can’t, they’re pulling out their hair because they don’t know what’s going on and it’s hard to read the medical record and figure it out and they need an interpreter. But it is fundamentally that frustrated feeling that people get. I don’t know, there’s probably a better word, but it’s, it’s a feeling when you know, you need help spending less time, and with less frustration with whoever it is you’re trying to help, it’s medical care.

Shana Siegel: I know you’re a doctor, you’re not an attorney, but I know that you’ve had experience with advanced directives, and I’m, so I’m wondering if you’ve seen instances where either having advanced directives or not having maybe the right directives has really impacted the care that a patient received.

Dr. Gerda Maissel: Yeah, that’s another one that, that is, Heartbreaking when the conversations haven’t happened, the legal paperwork super important, but the conversations I would say are even more important because you’ve got to understand what your loved one would want. And many times people think, so I’m the daughter mom’s in the hospital. And now I think I have to make a decision for her because mom can’t speak. What I would say is you are. Not making a decision for her, but rather saying what mom would have wanted.

Shana Siegel: Sure.

Dr. Gerda Maissel: Because you’ve already talked to mom several times and you have a sense of what mom would want in this situation. And the reason that I draw that line, or make that comment, is that the burden of making a decision for your Husband, wife, child, parent is incredibly high, especially when it comes to end-of-life care unless you know this is what they would have wanted. And when you know, when mom has said, I never ever want to be on a ventilator ever, no matter what. And the doctor says, you know, she’s going to die if we don’t put her on a ventilator and your heart is breaking and you’re grieving, you’re like, I want more time with mom. If you know, that mom would say no, and you’re sure, then you can say that to the doctors, you know, look, mom’s already done her paperwork. She’s a DNR. She’s a, uh, do not resuscitate a DNI. Do not intubate. And I know she would not want this. And then it gives you some peace on the other side of things. And so, the conversation is so heartbreakingly important.

Shana Siegel: A hundred percent. I tell all my clients that. I’m a big proponent. Have the conversation. That’s the most important thing. So, Dr. Maissel, thank you so much for spending some time with us today. We really appreciate it and I think we’ve learned a lot about, uh, how to be an advocate and when we need to call in a professional advocate.

Dr. Gerda Maissel: Well, thanks. It was a pleasure being here.

Shana Siegel: This has been Norris McLaughlin’s Aging Answers a limited podcast series discussing the key topics of elder law planning and long-term care. I wanna thank Dr. Maissel for joining me and you, the listener, for being a part of the conversation. Be sure to tune in next time for a brand-new episode. If you’d like to learn more about our work, please email me at aginganswers@norrislaw.com.