“Help! My mom was told she will be discharged from the hospital tomorrow and I don’t know if she is ready–or if the rehab they want to place her in is any good!”
These frantic phone calls are a familiar SOS that health advocates hear all too often. And too often, families don’t say their relative will be discharged “tomorrow”–they say “today.” Or “in an hour.” The discharge process is often rushed and consequently can be seriously flawed.
Families have long been challenged with the difficult decision to send a family member to a rehabilitation facility, also known as a “rehab,” following recovery from a serious illness such as severe COVID infection. But the COVID epidemic has made this decision even more difficult: it isn’t always possible to visit the rehab facilities that are suggested as options; the choices may be narrow; and there may be little guidance for patients and families on how to make the right choice.
It’s an important decision. Where a patient lands for rehab can be as important a factor in his or her recovery as the quality of care at the hospital where a patient is treated. It is heartbreaking to see a patient survive a difficult hospital course only to lose the battle at a substandard rehab.
After speaking with fellow advocates and with social work expert Sharon Novie-Greenberg, MSW, I came up with a list of suggestions that may help you advocate for yourself or a relative faced with this situation.
The takeaway:
- Make sure you and your family members have a primary care provider (PCP). That doctor is your #1 advocate–and you should reach out to him or her when a family member is hospitalized with COVID.
- Start to think about a family member’s discharge as soon as they are admitted to the hospital. Consider your options, and the pros and cons of each (see more about possible options below).
- Know the CDC criteria for an elder to return to an assisted living or skilled nursing facility following a COVID infection: these have changed. A PCR (viral) test is no longer required to be discharged to that setting.
- Consider discharge directly to home or to a prior assisted living with full time care / support, if you can swing it financially; your PCP can assist with this process and potentially help with the necessary orders.
- If your relative must go to rehab, research the options well: check out the facility’s score and reviews here.
Here is the story of one patient who had a particularly frustrating and sad rehab experience.
After a ten day battle with COVID infection that wracked her with high fevers and had her struggling to breathe,”Julia” was slowly improving–a pretty impressive outcome for a 96 year old who had suffered a stroke many years before. Now her fever was gone, her breathing was good, and she was starting to eat and drink and was downright chipper.
Her son, “George,” called her at the hospital. “What are you doing for fun today?” she asked.
“Well–we’re calling YOU–that’s what we are doing for fun,” he answered.
“I don’t really understand what is going on here,” she added, quietly.
I can only imagine how confusing it must have been for her–the masks, the elaborate “PPE” or personal protective equipment worn by the staff around her–even though she knew the hospital well. She had deep connections there: she had been a long-time member of the Board of Trustees and she had happily served as a volunteer in their coffee-shop for at least twenty years.
The medical team did a superb job; the nurses even brought the doctors in the room to see how mentally alert she was, and they listened as she chatted on the phone with George–asking him about this grand-daughter, that great-grandson.
But abruptly, the day after she showed improvement, the family was told that Julia was ready for discharge. Julia could not go back to the assisted living where she had spent the last 20 years, they said. She would need to go to a rehab. The family was given two choices: the Boston Convention Center, where the homeless with COVID were being sent, and a care facility far from family that got ONE star on medicare.gov.
Later, I would present the case to my physician colleagues, who noted that the hospital where Julia had been hospitalized had largely emptied out at the time she was discharged–why had they not kept her there? She was stable; they could have kept her until the assisted living agreed to take her back.
Perhaps the reason was that a new medical team had assumed management of her case and so summarily sent her to the one star facility? The family would never know.
It wasn’t easy for her family to get in touch with Julia once she was at the rehab. Generally, it took about five calls. The family asked about getting her transferred back to her assisted living. That would require two negative PCR tests, the facility said–and they weren’t sure when the National Guard was coming to administer those.
Dr. Larry Madoff, the head of the COVID effort at the Massachusetts DPH, noted at the time that according to current CDC guidelines, a patient merely needed to be ten days out from the onset of symptoms and have no fever for three days. Julia had met that criteria when she was discharged from the hospital.
Sadly, the rehab and assisted living moved too slowly to transfer her back. Julia died ten days after being admitted to the rehab—20 days after the start of her illness.
In one of my early blogs about COVID, I quote pandemic expert Peter Sandman on the importance of preparing yourself to mourn family members who may die while in the hospital or in places like nursing homes or assisted livings where you may not be able to be with them; and how to mourn as a family when you can’t gather together. It was shocking to realize that this family I knew was now experiencing this firsthand.
What could have been done differently? I asked social worker Sharon Novie Greenberg, MSW, to share her expertise and recommendations about hospital discharge in the time of COVID.
- A primary care doctor (PCP): make sure you have one. All MassHealth patients are assigned a primary care doctor, although patients are not always aware of that. Your PCP can be your best advocate (see #5 below).
- As soon as a relative is admitted to the hospital–begin to plan their discharge. “The moment someone gets admitted, call the patient’s case manager (they always have one, even if the patient or family don’t necessarily know that). Call on the phone and leave messages. Try to communicate by email since it is easier to correspond that way. Even if you feel like you are being annoying–leave a trail and keep tabs on when you are called back and who you are speaking with–so that you have a trail if things go bad or get complicated,” said Ms. Novie-Greenberg.
- Choosing the Right Rehab. The rehab facility you choose is incredibly important to a successful recovery from serious illness. One rehab facility where Julia had spent almost a year after a stroke generously offered to take her–but then was short staffed and could not. Only later did I learn that an excellent nearby rehab facility, Hebrew Senior Life, had not lost a single patient to COVID; this was not suggested as an alternative. Spaulding rehab, which had an entire dedicated floor to post-COVID patients and had a special relationship with the hospital she was admitted to was likewise not suggested: why had those facilities not been considered or even suggested? At the time, only the substandard rehab was suggested; George found another one that had an excellent reputation that took COVID patients–but it had a waiting list of 50 patients. “Do you have a magic wand?” George said the staff at the hospital asked him; “They said I would need one to get her in there.” He didn’t.
- Once admitted to a rehab, according to Ms. Greenberg, “The best thing families can do is to stay in touch with the social worker and rehab staff; push to reach out on the phone, try to make contact with the director of nursing. The more involved a family can be the better. This is true at any time but is even more true now.”
- Discharge directly back to the assisted living or nursing home: If the patient was admitted to the hospital from a nursing home or assisted living, consider discharge directly back to that facility. A Massachusetts advocate, Claire Morley of Labyrinth Health Advocacy, recently successfully advocated for one such patient. She arranged for the patient’s primary care doctor to write the orders so the patient could return directly to his memory care unit at the facility he was admitted from. The family arranged for temporary around the clock care until he got stronger–and the patient lived. “Of course we can do that; this is his home,” the assisted living told Ms. Morley. They worked as a team with the social worker at the hospital–the same hospital that Julia had been admitted to–to work out a successful plan. There are regulations in Massachusetts that family be involved and in agreement with placement decisions.
- Consider discharge to home. The hospital can likely set you up with a visiting nurse, or VNA. If in addition you can arrange for a private aide and that support is sufficient to meet the needs of your relative–that is great. If a patient is able to discharge home, try to find a dedicated caregiver who isn’t going to be working with a lot of others: if you can swing it financially, try to increase their hours so they are only taking care of your family member. Finding a dedicated caregiver is very helpful in limiting exposure in the midst of a pandemic. It may be hard for the caregiver to spend every day with a single patient –but better for the patient, family and community, since this will limit the exposure. That said, finding someone to care in the home for a post-COVID patient can be extremely difficult. One family member took her father home post-COVID infection on hospice care–but the hospice aide never showed up. She took care of him herself–and ended up contracting COVID (see How To Take Care of COVID at Home for suggestions on how to prevent that from happening).
- Consider hiring a health advocate. Many advocates specialize in this area–facilitating conversations between hospitals, nursing homes and rehabs, and smoothing the transition process. Never has there been a greater need than in the midst of this COVID pandemic.
To summarize: If a discharge is imminent–try to slow down the process so you have more time to evaluate your options. Ask for a team meeting with the case manager or social worker. There should definitely be a case manager or social worker with whom to discuss the discharge, and they should take into account the patient’s preferences and include family in the planning process. That is law in the state of Massachusetts (although some of these requirements have been relaxed for facilities overburdened by COVID cases–which was not the case here). If you are the patient’s health care proxy, then you can speak on his behalf if need be (note: the health care proxy must be “activated” by a physician. This article has links both to the Massachusetts health care proxy forms and a video on how to choose a health care proxy).
It is important to identify who is communicating discharge plans. The social worker or case manager needs to give proper time and notice before discharge. The patient should be able to appeal the discharge, which may or may not help his case, but can at least give him an opportunity to look into options for discharge.
An Impersonal System
According to Ms. Greenberg, “When you are dealing within the business of healthcare, it can get impersonal. Our system is so flawed, and this pandemic has exposed all the weaknesses of our system.”
She continues, “One of the biggest things that I see in terms of admission to rehab–people get funneled the wrong way. One thing I think what would help is tighter primary care for older adults. If there is no case management in post-hospital rehabs then people get lost in the system. It happens all the time. If there were someone who was actively following the patient–then the family could connect with them. And they would have someone to make sense of what is happening.”
“Primary care offices could have a dedicated doctor doing this. The needs are so great. It’s an insurance issue. A human issue. A cost issue. I remember one physician I worked with–a gerontologist; he was so dedicated: he would visit his patients in the hospital. People would call him at all hours–and he was always at the clinic long after it had closed, making phone calls.”
Now there is little in the way of continuity. But the best way to promote continuity is this: try to find an excellent primary care physician.
Final Thoughts
I think of Julia, one of those special people who spend their lives thinking about others. I remembered how she had asked her son–when SHE had just gotten out of the ICU– ”What are YOU doing for fun today?” she had asked George.
Maybe we can return that generosity of spirit by reforming our medical system; we can start by incentivizing good medicine and the health of patients rather than corporate health. We have some strong motivation to fix the problem: after all, with a little luck, in a few years we will be in the shoes of our elders–and “older” won’t look so old anymore.
*There are many excellent health advocates who provide this service. Here is the link to the Massachusetts Health Care Advocates.
**All names and identifying details have been changed to protect client confidentiality. The suggestions given here are not intended as a substitute for the medical advice of your physician.
Photo credit: photo from the National Cancer Institute, from Unsplash.com
