A hospice social worker on death, dying, and Medicaid

"Emotional support? What do you mean?"

Happy New Year! We made it to 2021, and the full launch of this newsletter. From now on, you’ll receive Sick Note at least twice a week. Look for my first roundup of the week’s healthcare news on Friday (and yes, this will include a photo of my cat Digby.) I’m really excited to share some of the interviews I’ve done over the past few weeks, and just thrilled that this is my job now. Thanks so much to all my early subscribers for their support.

If you’re new, a reminder: This is a newsletter about American healthcare, and each week I’ll run at least one interview with someone about their experience in our awful, cruel joke of a healthcare system. If you have a story about healthcare—from insurance failing to cover necessary meds, to a job that makes you sick—please let me know by replying to this email or emailing sicknotenewsletter@gmail.com. I’d love to talk.

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This week’s interview is with Elizabeth McElroy, a hospice social worker in Pennsylvania. This means she provides support, emotional and otherwise, to dying people and their families. If you only take one thing away from our interview, let it be this: The choices she describes, like choosing between sending older, dying family members to a nursing home on Medicaid, or dedicating a huge part of your life to caring for them, which may include a level of personal care you’re not qualified for at all, happen all the time. It’s likely that someone in America is having a conversation about this exact choice right now, while you’re reading this. It is making someone who is already sad and tired about their ailing family member even sadder and more tired; it’s pushing someone towards the brink of despair. It’s ruining someone’s life. It’s ruining thousands, millions of lives.

This country does not have a long-term or elder care system; we have Medicaid if you’re poor, or can make yourself poor enough to qualify, but this won’t necessarily pay for the level of care you need even if you qualify. And we have private providers, which are unaffordable for most. We don’t recognize the right to die comfortably, or the societal value of making the last weeks of someone’s life free from administrative headaches and worries about cost—and we certainly don’t recognize the burden that the current system places on family members and unpaid caregivers. These are problems that could be fixed, and we simply don’t.

If you take away two things from this interview, it should be that Medicaid “estate recovery,” where the state takes away property and assets from surviving family members when a family member on Medicaid dies after being in a nursing home, is a thing. An Atlantic article from 2019, by Rachel Corbett, did an excellent job uncovering the horrible truth of this practice. Please read it if you have time (and if you’ve been impacted by this process, please let me know).

As always, this interview has been lightly edited and condensed.

Elizabeth McElroy: I work for a home hospice agency that covers Philadelphia and the surrounding counties. Hospice is covered by Medicare, medical assistance [Medicaid] and private insurance. Very occasionally commercial insurance will have a co-pay, but typically it’s covered 100%. So what that means is, you get, if you are certified by two physicians that you have six months or less to live, based on your illness, you get a nurse, a social worker, a chaplain, a home health aide to do a little bit of personal care. All the medicines are covered that are related to your comfort, and any equipment like a hospital bed, a bedside commode and stuff like that. Which all sounds like a lot, right? And is, a lot, but the nurse comes, you know, two or three times a week. The home health aide can come every day, but only for about an hour. And all the rest of the care falls on the family. 

So because of the area where I live and work, it’s really economically diverse, so I have patients who are pretty poor and qualify for medical assistance, so they are often able to get care paid for by the county, through the waiver program. If they don’t already have the waiver, it’s a really onerous process to get it, because it’s dealing with the state and county, and there’s a private company involved—it’s an actual fucking nightmare, honestly—and it takes months, and I try to discourage people even from doing it, if someone seems like they’re imminently dying, because it’s so much paperwork and it is such a burden that it’s like… it’s a few weeks, just, hang.

And of course, if you’re rich, you can pay for a private aide to come, that’s like $25 an hour. And most agencies have a four-hour minimum, so at minimum you’re spending $100 a day. So if you’re rich, by all means, you can afford that. But I have a lot of patients who fall very firmly in the middle class, lower-middle class, and they, the only thing they own is their house, and that’s the only thing they have to give to their kids. [...] And a lot of people are really resistant to applying for county assistance, because when they die, the state will put a lien on their house, and their kids won’t get anything. [Sick Note: This is Medicaid “estate recovery.”]

Sick Note: That’s so fucking insane.

Elizabeth McElroy: It’s truly the worst part of my job to explain to people who worked so hard, and did what they were, quote-unquote, “supposed” to do, right? They saved their money, they bought a house, they sent their kids to college, and then at the end of their life the answer is, you’re not poor enough for help, and you’re not rich enough to pay for it, so good fucking luck to you. 

Sick Note: As a social worker, then, your job is to basically guide people through this maze of programs and advise them on what the best option is for them? 

Elizabeth McElroy: Yeah, sometimes. The bulk of my job is providing emotional support and psycho-education about the dying process, but I find that a lot of it is—and especially because a lot of people don’t have a lot of health insurance literacy, which, why would they? I’ve been a social worker for a decade and I barely have any health insurance literacy. So often people say like, but I have Medicare, or I have insurance; a lot of people too have these godawful Medicare Advantage plans, and they’re like, well, I pay $500 a month for a supplemental policy, so when are they going to send a nurse 24 hours a day? And I’m like, oh no. That’s not it. I don’t know what you thought you were paying for, but that’s not it.

Sick Note: That’s horrible. I would have to imagine that’s probably one of the hardest parts of your job, then, explaining to people who have a family member who’s dying what the last weeks of their life are going to look like.

Elizabeth McElroy: Yeah. It’s especially hard for people who, the caregiver is their spouse, who’s also in their 80s, or the caregiver is their adult child who is still working and has kids of their own. Personally speaking, my mom died on hospice five years ago, but my dad is a doctor, so number one they’re pretty financially secure, and also his job offered him a year off, paid, so he could take care of her.

Sick Note: That’s like, European levels.

Elizabeth McElroy: And I am wildly grateful for that, she died very comfortably in my father’s arms, which we should all have, we should all die that way. But that never happens. FMLA is three months and most people don’t get paid, et cetera. 

Sick Note: Do you ever see it where people do actually sell their house or get divorced, or do any of that sort of artificial asset spend-down?

Elizabeth McElroy: No, because they look back five years. What I have done occasionally is refer people to a legal aid agency, because there are, not loopholes but there are some complicated things where if there’s a dependent who was disabled before the age of 22 lives in the home, or if the spouse lives in the home, etc etc. But you can’t really, the state is going to make sure you, quote-unquote, “deserve” the help. 

Sick Note: How often do you see cases where there are people who clearly do quote-unquote “deserve” the help, but the paperwork is such a high bar to meet, that even people who should qualify might end up not getting [Medicaid]?

Elizabeth McElroy: Constantly. Especially in hospice, simply because, by the time things get approved… I think I have heard of once, and it was recently, that someone somehow got their case expedited, we’re truly not sure how, we think the daughter just called like, every day. And finally got someone to be like, okay, fine. But all the time, people have started the process then got rehospitalized, or started it and realized they were just over the limit. And there is an options program, which is a sliding scale situation, but even that, you know how they come up with these scales is draconian—you only need enough money to pay your rent and buy food, you don’t need anything else. 

Sick Note: Can you talk a little bit about, and I know this is kind of grim, what dying is going to look like for people who can’t afford to have a home health aide come, or can only afford it for a couple hours a week, what that does to a person in the process of dying? 

Elizabeth McElroy: It’s less the patient, really, it’s more the caregiver. People have to take off work, or ask family members—almost like with childcare, you know, that is such a nightmare, people have to ask other people to help them. Which is fine, but can be very complicated, depending on relationships. And, you know, when someone is dying, 95 percent of the time the hospice team is able to keep someone comfortable at the end of their life, but it’s a lot of medication, and it’s a lot of care. And it’s a lot of, you know, a family member may be very, very willing to do personal care for their loved one. But you have to learn how to turn someone in bed, change an adult diaper when someone can’t move, or occasionally do wound care. A nurse will come out and do that stuff, but again, not for 24 hours. 

Sick Note: And dying doesn’t take any time off; when they’re dying, they’re dying the whole time, it’s not on schedule with the aide. That’s a question I have as well, how does the scheduling work? If they get a certain number of hours, how is that even allotted? 

Elizabeth McElroy: For our home health aides, it’s sort of—there’s a scheduler, and the scheduler basically says, these four people need to be seen today, and they try to work it out geographically so that you’re not driving all over God’s green Earth, and the home health aide calls. And we try to accommodate families, but it’s tough. Everyone wants to be accommodated.

Sick Note: And home health aides are pretty poorly paid.

Elizabeth McElroy: Yeah, absolutely. Almost always women, almost always women of color. 

Sick Note: And probably people who have their own family members who also need their care. I’m sure it’s not that rare for home health aides to have to take time off their home health aide job to go and do that unpaid for their own family.

Elizabeth McElroy: Absolutely. And they are some of the loveliest people you could ever meet, they are truly sent from God, but yeah, there’s no way they’re compensated fairly for the kind of work that they do.

Sick Note: How frequent is it that you have a situation where someone is dying, and they don’t really have a good family support network—like, maybe they have one or two relatives who are around, and they are not that close, or not close at all. What happens then?

Elizabeth McElroy: Well, that’s a great question. Those cases are so tricky. We do have an inpatient unit and there is a respite benefit under Medicare, so you can get five nights in the inpatient unit just to give the caregiver a break. Sometimes we can do that, until people get a longer-term plan together. Often families will say, we think we want to send them to a nursing home. And then when they find out how much that will cost, they manage to get another plan together. 

Sick Note: So it’s a kind of, people come up with solutions out of necessity, rather than because they want to.

Elizabeth McElroy: The options are so limited. Because again the nursing home is based on, whether or not it’s paid for is based on your income, so it’s like, I don’t know, $350 a day to share a room with someone in a godawful nursing home—I have a lot of feelings about nursing homes—or pay, give up your house, whatever assets you have to the state. 

Sick Note: What has it been like since Covid hit?

Elizabeth McElroy: It’s been… Something. About half my cases are patients in nursing homes, and I don’t love going to nursing homes, you know, ever. But I have felt really glad to go during the past 9 months, because a lot of them have not been allowing visitors in, but since I’m essential, I’ve been able to go and it’s been such a blessing to be able to call family members and say, I physically saw the person you love, they are fine, they are comfortable, they are safe. So that’s been one thing that’s been really hard but also, I feel really lucky that I’ve been able to help in that way. 

Otherwise it’s just been, I’ve actually been surprised that people have let me come over—I think people are just so lonely. People understand what the nurses and the home health aide do, even the chaplain I think that makes sense to people. But when I’m like, I just want to talk to you, they’re like, what, why? But since Covid has hit and a lot of people are just so isolated, I think they really welcome a visit. 

Sick Note: That’s really grim, that the idea of a service that exists where it’s just someone who will talk to you is so alien and foreign to Americans. 

Elizabeth McElroy: I talk to people about death and dying every day, so to me it’s just like, this is a part of life, whatever. But these families, a lot of them have never had a significant loss before, or haven’t had a significant loss since they were teenagers and their grandparents died. And now they’re losing a parent, or a spouse, or sometimes, God forbid, a child. But yes, it is quite grim that people are like, emotional support? What do you mean?