Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: Alex, who’s in the studio with us today?
Alex: In the studio today, we have Sarah Hooper, who is Executive Director of the UCSF/UC Hastings Consortium on Law, Science, and…
Sarah: Health Policy.
Alex: Health Policy!
Sarah: We went for brevity. Thanks for having me.
Eric: Really looking forward to talk more about all three of those things, but before we do, do you have a song for Alex to sing?
Sarah: Yes, it’s a song by the boss, Bruce Springsteen, “How Can A Poor Man Stand Such Times and Live.”
Alex sings “How Can A Poor Man Stand Such Times and Live” by Bruce Springsteen.
Eric: Any reason you picked that song?
Sarah: The lyrics are apropos, the patient is left with a big bill and he’s not totally sure what to do next and that’s what we’re talking about today.
Eric: Is that common?
Sarah: Yes, actually.
Eric: I’m gonna start us off by asking a question. What is this consortium?
Sarah: Yeah, so the consortium is a formal partnership between UCSF and UC Hastings College of the Law. Our mission is really to create interprofessional partnerships in education, research, and clinical training and service.
Eric: We just had Anna Chodos on who was talking about her work with the GWEP of creating partnerships with a bunch of different organizations in the community, academics, nonprofits. You’re part of that, too, right?
Sarah: We are, so we are one of the community partners in the optimizing aging center and so, in our attempt to geriatricize primary care, as Anna likes to say, we are providing the legal expertise. What are the legal needs of older adults in our community and how can we work with healthcare providers and social service providers to enhance the capacity of all providers to provide care for this population?
Alex: You have a particular focus on the care needs and the legal needs of persons with dementia. Is that right?
Sarah: I do, so my research and teaching is in the law of aging and in dementia in particular and at UC Hastings, we have something called the medical legal partnership for seniors, which is a clinic in which our law students and faculty provide free legal assistance to low-income older patients at UCSF Med Center and here at the San Francisco VA.
Eric: That’s terrific, so can you tell us a little bit, in terms of setting this up; but what is the need for legal assistance in older adults with dementia?
Sarah: Yeah, so the disease, of course, raises a whole host of questions about decision-making, so as dementia progresses, an individual will need more and more support with decision-making, with ADLs, and with IADLs, and will gradually become entirely dependent on others for decision-making and for providing for basic needs. The legal questions that that raises are, “What is the legal decision-making infrastructure that we can create for this person and for this family?”
Eric: We’re fine, we do advanced care planning, we ask everybody about their advanced directives, whether it’s been done and about life sustaining treatments at the end of life, shouldn’t that cover? Shouldn’t we be done?
Sarah: That’s an excellent question, Eric, so that is really just the tip of the iceberg, so the first part of that is we usually think of advanced care planning as being about decisions about death. In dementia, decisions about death are an important piece of that; but what we’re really trying to focus on are decisions about the moment of incapacity or that gray area where we’re not sure if the person has capacity for decision-making. What do we do about that moment and what do we do about the prospect that this individual is going to live potentially multiple years with a need for supported decision-making or for someone to simply be making decisions for them? The medical decision-making is part of that, but we also need a plan for personal care decisions, for financial and legal decision-making, whether the person’s going to live, a whole host of things. Think about all of the decisions that you make in your life and now suddenly we have to come up with a plan for how someone else is eventually going to make those decisions.
Eric: What stage do you typically get involved? Are you talking about people who have mild cognitive impairment, who have early stage dementia, who have advanced dementia and caregivers are coming, to all of the above?
Eric: Is there a primary focus?
Sarah: The medical legal partnership model is meant to be an upstream model, so the goal is really for lawyers and healthcare providers to work together to prevent acute legal needs basically. A lot of legal care is emergency medical care and so, conservatorship is an example of emergency medical care or trying to unwind elder financial abuse, that’s something we prefer not to do. We would prefer to get in as early as possible to prevent this situation, so how do you do that? You do that before the individual has lost capacity, so if a patient has MCI, that’s a good time to get in. Early stage dementia is a good time to get in. There are legal needs that arise in advanced dementia and they’re usually caregiver-focused, but again, that’s not the time that we would prefer to be intervening. We would prefer to meet with a patient who’s in a position who can articulate their goals of care, their goals for financial legal decision-making, their goals for their families. We can really optimize their ability to engage in decision-making and come up with a good plan and be really thoughtful about it.
Eric: Are you finding that patients with early stage dementia are typically able to continue to be involved in these decisions?
Sarah: Of course, so this is preaching to the choir; but capacity, of course, is not an all or nothing proposition and diagnosis of dementia does not mean that somebody now lacks capacity to make decisions. Capacity is highly variable and decision-specific and that’s increasingly recognized in the law. It’s certainly recognized in California and so, a person may not be able to independently manage their finances. They might make some bad decisions, but that doesn’t mean that they lack capacity to choose a financial agent for instance, or to say where they want to live, or to hire an attorney who can help them navigate the insane patchwork of benefits that older adults have to navigate in order to access long-term care or just basic needs.
Eric: Yeah, that’s a really fundamental point and we may be the choir; but I think there are a lot of folks out there who have misunderstandings about the capacity of people with dementia to make these decisions that if they’re not managing their finances correctly, then they can’t engage in doing the financial advanced care planning, legal advanced care planning that you’re talking about.
Sarah: It certainly raises the potential and the prospect for undue influence and so, that’s not to say we shouldn’t be very careful in assisting persons with dementia with decision-making; but it’s not the same as saying that they don’t have any legal or clinical ability to weigh in or make these decisions.
Eric: What should the doctor’s role be with all these decisions? Because we get no training on financial decision-making, assessing financial capacity, will stress, none of that.
Sarah: Yeah, so the first thing you can do is help screen for and identify these needs in patients and families. I think that Medicare and other funders or payers are increasingly interested in incentivizing this kind of whole person care planning. There’s a new Medicare CPT code that reimburses for care planning with persons with cognitive impairment.
Eric: That doctors can use?
Sarah: That doctors can use or nurses. There’s a whole host of healthcare team members that can use it.
Eric: But not social workers, I think.
Sarah: Not social workers. Correct, unfortunately, and not lawyers unfortunately; but maybe lawyers should be reimbursed for this as well. But part of that CPT code reimburses for assessing not only for cognitive impairment, but for social needs of both the patient and the caregiver. A lot of those needs are actually legal needs or have a legal dimension to them and so, not getting reimbursed is no longer an excuse. There is a mechanism for doing this and for the training piece of it, if you don’t have a medical legal partnership in your medical center, you can partner with people in the community who can help train on this. I would say the first thing to do is think about your patient population, think about who in that population is at risk of cognitive impairment or decline in the next six months to a year, and target those people and educate them about the need for an advanced directive and for financial and legal planning.
Eric: When I think of our palliative care population, we’re often working with people who may have months, maybe years, that they have to live or that they may lose capacity at some point, even for a short period of time. I think in geriatrics, we’re coming around to the idea of medical legal practice clinics and the importance of them, at least partnering with lawyers. I don’t get the same sense we’re doing that in palliative care. Is that right?
Sarah: Yeah, so there are almost 400 medical legal partnerships around the country now, at least one in almost every state. The vast majority of them are focused on kids and families, which is incredibly, incredibly important; but I think that because of the demographic need and just the nature of the complex needs that people have in geriatrics and palliative care, there should be more of us. The medical legal partnership for seniors is one of less than a handful of these models around the country, but they are out there. We’re trying to grow.
Eric: What does it actually look like? Are you hanging out with the physician while they’re seeing patients?
Sarah: Yes, the difference between medical legal partnership and a referral into the community is that the legal team is actually integrated into the care of the patient and so, where that starts is with joint education. For instance, in our clinic, our students are trained by geriatricians at UCSF and in the community about the health needs of older adults. We do joint training on capacity, so what’s the clinical view of capacity and then, what’s the legal view of capacity. How do you reconcile the two of those in an individual patient client? It starts with training, making sure that the healthcare team and the legal team have some sort of common overlapping base of knowledge. With that knowledge, the providers are equipped to now start recognizing legal needs in their patients. Now, healthcare providers are in a position where they can say, “Hey, I think that this is really important to your healthcare if you actually sort out how you’re going to access long-term care supports and services that are going to support your goal of care to stay in your home.” Right?
Sarah: It’s one thing to say, “You have a goal of care. It’s another thing to have the resources to make that a reality and I think my friend down the hall is a lawyer who can provide free legal assistance to help you understand and unpack a lot of those stuff.” The other technical piece of this is there’s information and data sharing that can happen, so if people are worried about HIPAA, you should be; but medical legal partnerships have worked out a way to work within HIPAA to permit a certain amount of data sharing between the legal team and the healthcare team, in order to maximize our ability to advocate together for the patient, for whatever their needs might be.
Eric: That’s terrific, so one thing comes up off and in dementia, is the incredibly high cost not of a healthcare; but of the need for a personal assistance, living arrangements, or supportive housing for people who develop dementia and/or have progressive dementia. Is part of what you do educating patients and families about what’s ahead prognostically – not in terms of life expectancy as much, but in terms of financially what they need to prepare for?
Sarah: Financially, yes. In a medical legal partnership, what’s helpful is to be able to have the clinical team educate about prognosis and the progression of disease because we can absorb some of that by osmosis.
It helps us do our jobs better, but we’re not trained to do that piece, so what we are trained to do is talk about the financial and legal mechanisms, in other words, benefits, rights to pensions, those sorts of things, how to navigate the patchwork of financial and legal resources to access the benefits that you will need, how to think ahead about it.
A big piece of that is also elder financial abuse prevention because we have a gap in coverage as you’ve noted. Medicare does not pay for the majority of services that families need in dementia and Medicaid ends up being the number one payer of long-term care supports and services, but many families overestimate the role of Medicare in paying for their costs.
They haven’t planned and they have no idea about the role of Medicaid in long-term care. A lot of people perceive Medicaid as that program for poor people, right? With stigma embedded in that and don’t realize that Medicaid ends up being the safety net for the middle class and sometimes the safety net for higher income people who have been victims of elder financial abuse in the marketplace and have lost a lot of assets.
It plays an outsize role in care of this population, but out-of-pocket costs are also enormous.
Sarah: One thing that an attorney can do is educate about your rights within certain programs, so the social security program, the VA host of benefits, certainly, the Medicaid program, because Medicaid is essentially a series of subprograms. It can become very complex for people who don’t understand how to navigate that, so a lot of legal aid offices will educate families about what those programs are, the benefits that might be available to them, and thinking ahead. You can pay out-of-pocket using X number of resources for so long and then, what’s the strategy going to be. For the 10% of people who actually buy long-term care policies, they often need help navigating those policies because unfortunately they don’t offer the range of benefits or supports that families thought they were going to receive. Sometimes, legal advocacy and education can be really helpful there as well.
Eric: Just a New York Times article on the ethics of, I think, asset protection to qualify for Medicaid and giving away your assets to qualify for Medicaid, even for those who are upper middle class high earners. Did you see that article?
Eric: Do you have any thoughts on what should our role be in helping people think about, for instance, asset protection and the need for qualifying for Medicaid?
Sarah: I’m really glad you asked that question, so I think a good form of medical planning is to take a whole person approach. I’m sorry I keep saying Medi-Cal because that’s our program in California, but by MediCal, I mean Medicaid generally in other states as well. Why do you want to be on the Medicaid program? There are many reasons where you might not want to be on the Medicaid program and paying out-of-pocket would give you more options, but if you don’t understand the Medicaid program, or what it means to be on the Medicaid program, or what that will mean for your assets and wealth, then you will have a harder time making that decision.
I think of it, first of all, as just an educational tool. What is the program? Do you understand what this is?
Do you understand some of the practical limitations of being on the Medicaid program? Even though many forms of discrimination are unlawful, for people on the Medicaid program, they do happen.
Part of an attorney’s job is to tell you both your theoretical rights and how those play out locally and what you might want to keep in mind in terms of access to various services, but I guess I would also respond to that by asking you a question, which is, have you ever been to a tax planner?
Eric: No, but my wife is a tax attorney.
Sarah: Well, why do you think I asked that question?
Eric: I don’t know.
Sarah: This is entirely my opinion. I’m not speaking for UCSF Medical Center or UC Hastings College of the Law. This is entirely my opinion. There are a lot of mechanisms by which wealthier individuals can get information and assistance in understanding how to protect the wealth that they have accumulated over their lifetime for themselves and for their families. Those are very well-accepted services and mechanisms, but for some reason, when it comes to lower income people and middle class people, there’s the stigma about getting information about how to protect your resources. My view is that we should at least be internally consistent about our views of the rights of different people to get information and assistance in making decisions about how to manage their resources, whether that’s for high-income people or for low-income people.
Eric: Yeah, we see it a lot where somebody doesn’t have a lot of money, maybe it’s $20,000 that they have left. They make enough to qualify or not qualify for Medicaid, but their number one goal more than anything is that they want to make sure that that $20,000 goes to a certain family member upon their death. They will do anything to protect that $20,000 and it surprised me a lot. It just happened to us a week ago on our palliative care consult service.
Sarah: It happens a lot and I think I do see it as a social justice issue, so Amy Kelley and colleagues have a really sobering paper in annals of internal medicine that I really, really recommend. They essentially looked at the cost of dementia care in the last five months of life and they found the average cost of dementia care was a little over $60,000 in the last five months of life and that was entirely out-of-pocket.
This represented about 30% of patients’ wealth in dementia as compared to other diseases, so in the non-dementia group, the out-of-pocket costs were about 11%. It has a disproportionate impact on certain communities, so they found that in African-American patients, the out-of-pocket cost represented about 60% of their wealth.
Two-thirds of their wealth went to paying for long-term care supports and services. For single women, so women who were widowed or unmarried, it represented about 58% of their wealth. With people with less than a high school education, I think it was about 58% of their wealth, so if you think about all of your income and assets that you’ve worked so hard for over your whole life and for vulnerable populations, you literally had to scrape together, that now is going to just provide for your basic needs and your basic care.
This is an untenable situation for a lot of people in our community and I think because of our national and state policies, we’ve setup an environment that is a highly complex decision-making environment. We’ve essentially said, “Good luck to you. Go figure out how to marshal the resources to pay for this care that you need.”
I think in that environment and I think reasonable people can disagree about the best way to provide a system of long-term care supports and services, but I think we should be transparent about the fact that we have put the onus on patients and families to figure this out. We’ve put this onus on them at a time when they’re losing cognitive function and they’re highly stressed.
It’s not a good decision-making environment, so it’s no wonder that almost 50% of persons with dementia experience at least one form of elder abuse. These are really highly stressful situations, so direct legal education and assistance is something we can do to help them, to help mitigate that stress and help support decision-making and hopefully prevent outcomes that are really detrimental to health, like conservatorship and elder abuse.
Eric: That’s terrific. We’ll include a link to the Amy Kelley paper, fantastic paper, in the GeriPal post or the company’s podcast. I wanted to ask you about caregivers because they’re just a huge part of this story in dementia and the burden on caregivers, physically, emotionally, and financially. I want to ask how you work with caregivers in particular to support them through this process.
Sarah: An important thing that I’ve discovered in my work, well, this isn’t news to a lot of people; but caregivers are navigating a huge number of decisions on a daily basis in addition to grappling with the emotional and psychosocial dimensions of caring for someone with dementia. One piece that we can do on the legal side is, for instance, helping to educated them about their role as a decision-maker for the older adult.
I have found in my work that a lot of caregivers don’t really understand basic concepts, the difference between an agent and a conservator, the types of powers that they have. I hear a lot of people confusing powers under an advanced directive with powers for financial decision-making.
We’re not supporting and we’re not preparing caregivers to make these decisions and it can lead to suboptimal decision-making and in some cases, allegations of undue influence and abuse. Another piece is ensuring that the caregiver themselves has secure housing, stable housing, that they are not being discriminated against in the workplace or place of education because of their caregiving responsibilities, so advocating on that front to help ensure that they’re at least getting what they’re entitled to in terms of work protection.
There’s a whole host of things that we can do. If caregivers themselves are economically insecure, we can assess their benefits and obviously, if they’re spouses, a lot of these things, you’re talking about these things in tandem; but for older children, it’s a little bit of a different approach to advocacy.
Eric: It sounds like one thing we should all be thinking about doing is setting up a medical legal practice clinic. If we’re not there yet or it’s logistically impossible, two or three things that listeners can start doing in their practice to make sure we’re addressing some of these needs.
Sarah: Again, identifying your at risk population.
Eric: Do you have specific tools that may help with that or questions that we should ask?
Sarah: Think about who is at risk of cognitive impairment in the next six months to a year and think about if that individual has an advanced directive. If they don’t have an advanced directive, they probably don’t have any of their other financial or legal planning in place. If they do have their advanced directive, it doesn’t necessarily mean they have all their other ducks in a row; but then, ask the question, “Have you done any financial or legal planning?”
Eric: If the answer is no?
Sarah: If the answer is no, then refer them to legal aid in the community, so the Older Americans Act provides free legal resources to individuals over the age of 60, at least, in theory, in every state, in every community. One reality about accessing legal aid is that they are incredibly overworked and underfunded and often, unfortunately, cannot prioritize low urgency needs like advanced planning.
This is one of the needs that in MLP we’re trying to bridge is rather than wait until we’re defending an eviction, can we get in earlier? Right? But some communities won’t have that luxury, but you can try, so start with a free legal service with the Older Americans Act provider in your community. If they are unable to take the client, then refer them to your local state bar referral service, to an elder law attorney.
The state planner doesn’t necessarily have expertise in the things like Medicaid for long-term care and so, referring to someone who has experience with older people or people with disabilities is an important thing to keep in mind. I also really recommend against making direct referrals to private attorneys in the community. It’s much better to go to the state bar regulated referral service, so that they can do some intake and make sure that the person is directed to the right attorney.
Eric: Let’s say I don’t have a medical legal practice clinic or MLP, but I want to start one. Are there resources for me to do so?
Sarah: There are really fabulous resources on the National Center for Medical Legal Partnership website. The best resources are going to be right in your community, so there are legal aid attorneys and in many places, law schools that are doing this kind of work and connecting your work is going to make a lot of sense, both for training of professionals and for better serving the client and patients that we all work with.
There are some promising things that I can mention in terms of funding, so HERSA has determined that civil legal services can be paid for using HERSA dollars. Some community health centers are doing that, some health centers have said, “We see a return on investment in these programs.” For instance, some MLPS have demonstrated a reduction in hospital readmissions and a reduction in overall utilization, cost of care.
Some MLPs, one in palliative care, actually, in Nebraska, has demonstrated a return on investment. The medical center is actually paying for their legal services, providing those to their patients. There’s currently a proposed macro rule that would allow screening for health-harming legal needs to be considered one of the factors in MIPS scoring, so screening for health-harming needs if the rule is passed would be something that could positively impact your MIPS score.
Other mechanisms, the VA is currently very interested in medical legal partnerships. We’re still looking for a sustainability mechanism through the VA, but certainly there are opportunities to expand to VAs as well. At the policy and systems levels, there are mechanisms that are emerging. The national center has done really great work around to enable health systems to adopt MLPS.
Eric: Wonderful. Well, maybe with that, I want to really thank you for sharing your time with us today.
Alex: Thank you so much, Sarah.
Eric: For the great things that you’re doing out there. Alex, sing Sarah a different song. What are we gonna do?
Alex: Can we try that again?
Alex: I’ll try it again. Alright, I’m gonna try to get it right this time.
Alex sings “How Can A Poor Man Stand Such Times and Live” by Bruce Springsteen.
produced by: Sean Lang-Brown
by: Eric Widera