By Jeni Miller
Elder care in the United States is increasingly a “major source of moral distress in the hospital case management and social work world,” according to Lisa Bednarz, LCSW, CMAC, ACM-SW, ASW-G, regional director of case management for Robert Wood Johnson Barnabas Health,
“So much of discharge planning is helping patients and families navigate the broken healthcare and long-term care systems,” Bednarz says. “You are a witness — and sometimes a perpetrator, or so it feels — of families realizing that the care their loved one needs is going to bankrupt them. The choices families are faced with are impossible, and they often have no idea how little insurance covers in this space.”
The State of Long-Term and Elder Care
Finances play a central role in elder care. Bednarz notes that the cost for skilled nursing in the tri-state area (New York, New Jersey, and Connecticut) averages $15,000 per month, while assisted living can be more than $6,000 per month.
“How far your money can get is different than it was a generation or two ago,” Bednarz explains. “We’ve seen this in the housing market. People could buy a house for a pretty reasonable percentage of their income, and that cost has gone up. The same goes for elder care. It’s extremely difficult for most working adults to save the full amount needed to secure the care they will need when they’re older.”
Aside from finances, the cultural norms of society also play a role in making elder care more difficult. “We live in a mobile and distant society,” Bednarz says. “Most people used to move to a home in the same town or even on the same street as their parents, and they could help care for them. Now, we are states or even countries away and don’t really have the same community that has always taken care of older adults, so we now rely on caretakers.”
Paying for those caretakers is an incredible challenge. With workforce shortages across the board for low-wage, highly physical jobs, the costs are rising. For most, the situation is completely untenable. But what about Medicare or long-term care insurance?
“On the payer side, Medicare was never supposed to provide for long-term care; it was health insurance,” Bednarz says. “There was a time when there was a boom for long-term care insurance, but it’s never been a very regulated industry. There is a wide variety of plans, and it’s hard to say if they’ll necessarily meet your needs. Ultimately, it costs insurers more than they expected.”
Interestingly, people with the lowest income and fewest assets — as well as the wealthiest people — are not the ones most affected by the state of long-term and elder care in the United States. Navigating the long-term care system can be challenging for everyone, but individuals with limited financial resources often face additional hurdles. This can be particularly critical for the lower middle class, who are neither Medicaid eligible nor do they have the resources to seek specialized professional guidance.
The greatest pitfalls are in the lower middle class. “These are individuals who own a home because they bought it 40 years ago. They might get a pension, but it’s not enough to pay for long-term care,” Bednarz says. “They don’t know how to navigate the system, but they can’t afford an elder care attorney. Then, they are failing in their home, and it is too late. They need a guardian, their home becomes unlivable, and they can’t take care of it. In the lower middle class, they are not Medicaid-eligible, but neither do they have any resources to navigate.”
Challenges in Discharge Planning
Regardless of socioeconomic status, discharge planning for elderly patients who need the next level of care can be a great challenge for case managers when the options seem limited.
“It’s morally distressing for case managers because their job is to move the patient safely to the next level of care,” Bednarz notes. “Their job is to hold the hand of the patient and guide them through the system, but the system is broken. The case manager is in the position of telling them that what they want doesn’t exist, or that they can’t afford it, or have to sell their home for it. It’s a terrible message.”
“Assessing what a patient may need is the easy part,” she continues. “There’s this narrative out there that we’re missing the signs or not making the right connections. Of course, we can all always do better. But often, we can identify the need but can’t change that the patient and their family have some difficult decisions ahead of them.”
So many features go into the discharge planning process because it often is more than simply assessing whether a patient needs care. “It’s more about if they can make the sacrifice to get the care they need,” Bednarz notes. “Often, there are so many things they have to give up.”
The situation can feel contentious for the case manager, who represents and cares for the patient but also wants what is best for the family. However, if connecting the patient to needed care ends up harming a family member (i.e., if they cannot live in their home anymore), then it becomes almost impossible to rely on family members to make good decisions for their loved one anymore. When finances dominate the picture, it becomes extremely difficult to take the family system into account and prioritize the patient at the same time. These priorities often are at odds, Bednarz notes.
In these circumstances, nurses, case managers, and social workers are prone to discouragement, especially considering this difficult dichotomy and the feeling that there is nothing that can be done to help.
“Nurses and social workers both are helping professions,” Bednarz says. “You have a vision in your head of what that help looks like. But in reality, helping people doesn’t really look like that, people don’t like your intervention, they feel bad, you feel bad, and it’s not what you thought it would be when you chose your career. People are less linear than we think — helping people is not always a rational experience. It wears on you, leaving you feeling like you’re not really helping people.”
Many case managers and social workers leave the field because of this experience. Bednarz has taken up the task of helping them reframe and redefine what it means to help people.
“I remind [case managers] that these individuals are going to be in this experience whether I exist or not, and they’ll need care whether I exist or not,” Bednarz says. “To help by being there beside them as that happens and help them as much as I can through that journey — even though I can’t take them out of that journey — it’s a privilege.”
Bednarz recommends that case managers continue to educate, build rapport with families, and truly spend time reflecting on what it means to help people through these difficult and often unchangeable circumstances.
Another must-do for case managers? Talk with the leadership team and supervisor, in especially difficult situations.
“Stay in touch with clinical supervision to talk through the real emotional trauma of doing this work,” Bednarz says. “Case management can be a lonely experience because you are the person everyone calls to help with issues outside of acute care. People who can’t pay their bills, or who are struggling at home, call the social worker/case manager because that’s who deals with this. It can be lonely because you might be the only one who knows deep down that this person isn’t going to get the help they need.”
Holding the Conversation
In the meantime, educating families by encouraging them to hold difficult conversations earlier can help bring more clarity to a challenging situation.
“From a pragmatic perspective, we and our aging parents need open lines of communication,” said Bednarz. “Where our struggles are, needs are, values are, whether it is important to spend more time in our home even if it doesn’t provide the most support we need, or whether we should leave home sooner, we need to be having those conversations.”
Case managers can suggest that families have meaningful conversations with their aging loved ones, asking questions like: “How do you want to age? What is graceful aging to you?”
“Having conversations earlier and more often is better,” Bednarz adds. “Discussing finances is also important. People need to know that we save money for this. These are the rainy-day funds, and this is the rainy day. They often don’t want to touch these savings, but this is the reason we save and put the money aside, because this is needed care.”
Elder care in the United States is increasingly a “major source of moral distress in the hospital case management and social work world,” according to Lisa Bednarz, LCSW, CMAC, ACM-SW, ASW-G, regional director of case management for Robert Wood Johnson Barnabas Health.
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