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When you think about being a family caregiver, what comes to mind? Perhaps you envision going to your loved one’s house a few times each week, checking on them and making sure they have all the things they need? Maybe you think of taking them to appointments and calling them every day? Perhaps you live together and you are there around the clock?
With the help of medical alert systems for seniors and other tools to make life easier and safer, you might readily slip into a caregiving groove that works for everyone. Maybe you can even work full-time while you also serve as a family caregiver.
Many people do this. According to the AARP Caregiving in the U.S. 2020 Report, about 53 million people are caregivers for someone over the age of 18, and most of those individuals care for an elderly person. Sixty-one percent of them are in the paid workforce in addition to providing that care.1
There’s a new trend taking hold in the world of caregiving, and it’s bringing both relief and an added burden to family caregivers.
What is Hospital at Home Caregiving?
When someone is sick enough to need daily medical care but not sick enough to warrant staying in the hospital to get that care, they wind up in a strange sort of medical limbo. That’s where the hospital at home caregiving idea comes in. It’s essentially setting up a family for what they might need to take care of their loved one at home, providing much of the care that person needs on a day-to-day basis, but without the hassle or high expense of a hospital stay.
At first blush, this sounds like an excellent plan. Those who want to spend time with their loved one don’t have to worry about visiting hours or disturbing someone else in the other half of a semi-private room. They don’t have to carefully schedule life around hospital visits and waiting for updates from doctors and nurses. They don’t even have to worry about the frustration or expense of driving, traffic, or parking.
And for the person who needs the care, there is no worry about feeling isolated from family and friends while being overwhelmed by the presence of strangers around the clock. There are no bells or alarms to wake them from their slumber every hour or so. They are far more comfortable in their own familiar space. And of course, the food at home is likely much better than anything they will get in the hospital!
But when you dig a bit deeper into what’s known as one of the fastest-growing experiments in delivering healthcare in the United States, you see that perhaps the story is more complex for the family caregiver.
How Hospital at Home Works
Those who qualify for hospital at home still need the services of medical personnel. It is meant for seniors and others who have serious illnesses but are relatively stable, such as those who have COPD, problems with advanced diabetes, some heart conditions, or even infections that require more acute care. These are individuals who need daily care, not just a weekly appointment with a doctor or nurse to check things out.
That means that those who are in this sort of program will get visits from medical providers, such as home health nurses, on a regular schedule. Depending upon their situation, that might range from once every few days to several times a day. Telehealth takes a strong role as well, with regular check-ins with the doctor via video call.
And some of the things that would happen in the hospital, such as regular blood work and some simple labs, can take place at home as well. More invasive or extensive testing, of course, would require a trip to a hospital or clinic.
All of this might mean changing the home to accommodate what your loved one needs. For instance, a hospital bed might be a necessity, and will be moved into the most convenient available space. There could be other equipment, such as heart monitors or IV poles, in addition to the equipment you likely already have at home, such as a fall alert, blood pressure cuff, blood sugar monitor, and the like.
How did all this come about? Blame the pandemic.
With no vaccine yet developed for protection, COVID was wildly infectious in 2020, spreading like wildfire through the public but especially through nursing homes and hospitals. As a result, the federal government made quick arrangements for hospitals to treat people at home. Since November 2020, hospitals that meet certain guidelines of care can be paid the same amount to treat patients at home as they would be paid to treat them in a hospital room. So far, there are 290 hospitals over 37 states that do this.
What This Means for Caregivers
While there are some definite advantages to a hospital at home setting, there is also a great burden on family caregivers. Their duties can suddenly increase in scope and significance when on a hospital at home program.
For instance, a family caregiver might be accustomed to making meals and ensuring their loved one drinks enough water to stay well-hydrated. But with hospital at home care, the caregiver might be expected to track food and water intake, as well as bathroom use, much as a nurse’s aide would do in the hospital setting. They might also be asked to learn how to do other things that would normally be the work of nurse’s aides, such as changing dressings on wounds or ensuring adherence to medications that might need to be given every few hours. Caregivers aren’t asked to handle more invasive medical tasks, such as dealing with an IV.
Because of the increased burden of care that comes along with hospital at home, up to 62% of those who are offered it turn it down, according to NPR. Though studies on the situation are few and far between given how new the programs are, those that have been done found that the stress levels of hospital at home were on a par with hospitalization.2
And that’s a serious problem, considering that family caregivers are already stressed enough that their mental and physical health suffers. The latest statistics on caregiving found that between 40% - 70% of caregivers suffered from symptoms of clinical depression and 23% reported that their physical health was worse since they started their caregiving journey.3
Those statistics apply to those who are family caregivers, not necessarily those who are using hospital at home programs. Given the seriousness of the higher level of care required – as well as the scheduling of nursing visits, telehealth appointments, and more – it’s possible that the emotional, mental, and physical burdens of using hospital at home could be even greater.
Understand Your Options
In many cases, hospital at home care isn’t something that the hospitals ask the caregivers about; rather, the hospitals might make the decision that this is what needs to happen and then discharge the patient with certain instructions, leaving the caregivers to scramble to figure out the rest.
AARP has studied the implications on caregiving for hospital at home and recommends that the effects on caregivers should receive much more attention. This is encouraged not just at the hospital level but at the federal level as well, in the hopes that the Centers for Medicare & Medicaid will implement rules that clarify the responsibilities of the family caregiver when they are in a hospital at home situation.4
In the meantime, what should you do if you are asked (or told) that you will be caring for someone at home under the hospital at home program?
· Get all the information. This is not a request to be taken lightly, as it can upend your entire life, even if you are already a family caregiver. The level of care is much higher and can thrust you into a deeper level of responsibility literally overnight. Before agreeing to anything, slow down and ask lots of questions.
· Weigh the pros and cons. The hospital might want your loved one to have specialized care at home, which has a very clear benefit for the hospital system – but what about you? What about your loved one? Are there out-of-pocket costs? Do you have a strong support system? And if your loved one’s health deteriorates, what can you expect from the hospital?
· Understand the implications. Is hospital at home going to end within a certain period of time? For instance, someone who is dealing with pneumonia or an infection might be on a hospital at home program for only a few months. That’s a much easier situation to handle than a person who has a chronic illness that has gotten worse and shows no signs of getting better. In that case, hospital at home care might be an indefinite situation. Know the facts.
· Advocate for yourself. You will need help in this new journey. Make sure you get it! Enlist the help of a hospital social worker or other patient representative to make sure that you aren’t expected to carry out medical duties and that your loved one gets appropriate healthcare visits. It can be easy for someone to fall through the cracks.
· Know when it’s enough. Sometimes hospital at home just doesn’t work and the person needs to go into the hospital for a while. Don’t hesitate to tell the doctor and nurses that this needs to happen. If you feel pressured to continue with the situation, it’s time to get a second opinion.
As you go through the hospital at home journey, remember that you want to avoid any other medical issues if at all possible. That’s one of many reasons why an emergency alert system is so important. Being able to press a button alarm and get the attention of a trained professional right away can provide the peace of mind that if an accident or medical emergency does occur, help will be there fast.