by Jody Gastfriend
Back in the mid-1990s, when I ran a home health care agency, it was the visiting nurse who managed a patient’s medical needs and the family who helped with household chores and personal care. But with shorter hospital stays and advances in technology, families are now assuming another role when their loved one goes home from the hospital—Florence Nightingale—just without the training or iconic status. The Home Alone study, conducted by AARP and the United Hospital Fund, found close to half of family caregivers perform in-home medical and nursing tasks for their family members with multiple chronic and cognitive conditions. They—mostly daughters—are managing medication, administering enemas, operating feeding tubes, and tending to wounds. Many find the dual role of devoted daughter and attentive nursemaid physically and emotionally taxing. Some take solace in the fact that they are playing an important role in keeping their parent alive—or at least out of a nursing home. At the same time, performing multiple medical tasks can pose risks to the caregiver and lead to increased stress and depression. Families take on this responsibility for a mixture of reasons: devotion, love, guilt, and the belief that they have little choice in the matter. It’s as if there is a silent contract between the healthcare system and the family. Your mother’s coming home. Tag, you’re it—ready or not.
A Step in the Right Direction
Viewing the family caregiver as an essential part of the hospital discharge plan seems like a no-brainer. Many families may not fully understand what discharge planning is all about. The “discharge” part becomes all too evident when they get a call that their father’s going home from the hospital. But the planning piece? Not so much. This is what should happen: the designated family caregiver’s name should be recorded at the time of a patient’s hospital admission, adequate notice should be given prior to discharge, and comprehensible instructions on home care tasks, especially medically related ones, should be provided (and demonstrated) before the patient leaves the hospital. These best practices may be common in some hospitals, but not in others. Now, following these practices is not only a good idea: it is the law in a growing number of states. In 2014, AARP proposed the CARE (Caregiver Advise, Record, and Enable) Act so that families are not left in the lurch when their loved one gets discharged.
There are also encouraging trends to address the needs of frail seniors, especially those without adequate family or community support, many of whom have both Medicare and Medicaid. Coined the “dual eligibles,” these people are some of the sickest, poorest, and costliest patients to care for. The good news is that programs are springing up around the country to better understand and address the needs of this vulnerable population. These community transition programs, funded by hospitals as well as state and federal grants, offer a wide range of services such as case management, in-home care, and transportation. The goal is to provide much-needed community support to frail elders who are at risk for bouncing back to the hospital after discharge. Sometimes the reasons for preventable readmission are pretty basic. Your mother doesn’t have a ride to the doctor for a follow-up appointment or she gets her meds mixed up. Perhaps your dad has to stick with a salt-free diet and his cupboards are stocked with peanuts and potato chips. Or maybe he is alone in an unsafe apartment and needs more oversight. Solving these problems drives down costs, improves care, and just makes sense. Your local Area Agency on Aging can clue you in to programs in your area, along with eligibility requirements. Some programs are short-term and focus on the thirty days after discharge, when patients are most likely to get readmitted. That’s also the same period of time when hospitals may pay a hefty penalty if they do.
Pushing Back
The discharge process may be fraught with land mines, but what do you do when the time frame just doesn’t make sense—like being given twenty-four hours to choose a nursing home for your mother in Poughkeepsie—and you live in Los Angeles? Or your father with early-stage dementia is being discharged home—alone—with a sheet of instructions he can’t understand. You are not Houdini. You can’t magically appear or get yourself out of a bind without speaking up. You and your parent are entitled to a reasonable amount of time to make life-altering plans for post-hospital care. While there may be some disagreement about what “reasonable” means, you may be able to buy some time if you push back on what you think is an unsafe plan. Even a day or two may help when it comes to making big decisions about care and finding the right provider. Meanwhile, pay attention to your parent’s rights under Medicare. Within two days of your mother’s admission to the hospital, she will receive a written notice that says: “Important Message from Medicare.” Included in this notice is a Medicare bill of rights, so don’t toss it out with the Kleenex on the counter. If the hospital’s pressuring your mom to go, but you don’t think it’s safe, your bill of rights will explain the appeal process. It is not something to undertake lightly, but it’s good to know about if other measures fail.
Do Your Research
While it goes against human nature to cram for a crisis before it occurs, a little preparation can go a long way. Exploring options ahead of time may give you a better idea of the lay of the land if you need to choose an assisted living community or nursing home on short notice. But where do you begin? The list of providers the discharge planner hands you is not much to go on. Does assisted living make sense if your parent is going to need more care down the road? And how do you tell which nursing homes will provide the best care and which ones to avoid at all costs?
One of the toughest decisions to make under the gun is choosing the right nursing home. As a discharge planner, I saw families make this emotionally wrenching choice on a Wednesday because their father was being discharged on a Thursday. As my dad once said, “That is no way to run a railroad.” It takes time, research, and a village to get it right. The discharge planner will give you a list of facilities to choose from. That’s a start. Seek recommendations from friends, neighbors, and healthcare providers familiar with local long-term care options. If you can afford it, you may want to hire an aging life care professional. Employers can also be a good resource and are increasingly offering support to their caregiving employees. If you are in the workplace, reach out to your manager or human resource department and find out if your organization has an employer-supported eldercare program. Your village should also include your local long-term care ombudsman. Directed by the Administration on Aging (AoA), ombudsmen resolve problems between families and long-term care facilities and can instruct you about residents’ rights. An ombudsman probably won’t tell you which provider to choose, but can steer you away from facilities that have a history of complaints from families and residents. Keep in mind that ombudsmen are mostly volunteers and some are more informative and knowledgeable than others. It’s a free service and you can find an ombudsman by going to ltcombudsman.org.
To read the full chapter you can purchase the book here: https://yalebooks.yale.edu/book/9780300221350/my-parents-keeper
