On Jan. 7, the day after a mob of Trump supporters stormed the U.S. Capitol in Washington, my husband took ill. He had just returned from cutting a fallen tree, and although he was able to drive the tractor home, he complained of feeling disoriented. I was puzzled: He seemed to have amnesia, and couldn’t recall the rioting in D.C., but he showed no physical signs of a stroke. He was even able to give me directions as I drove him to the hospital.
When we arrived at the emergency room, I told the security guard that my husband was having memory loss and a possible stroke. He escorted my husband to the registration area and told me that, due to new Covid-related restrictions on visitors, I would have to wait in the parking lot. It was 30 degrees.
That experience of being shunted away from an ailing loved one has become distressingly common as hospitals have adopted restrictive visitation policies during the pandemic. The policies seem reasonable at first glance, and in many cases are necessary to slow the spread of a disease that has already claimed half a million American lives. But they can be a tremendous burden for families, and they may have unintended consequences for patient care: They likely increase the odds of misdiagnoses and delayed diagnoses and lead to poorer health outcomes — particularly for patients who are suffering strokes, who are too ill to clearly articulate their needs, or who otherwise have difficulty communicating.
Even before the pandemic, studies found that, on average, a hospital patient is subject to at least one medication error per day, with at least a quarter of all medication-related injuries being preventable. Without loved ones acting as bedside advocates, those error rates would almost certainly be even higher.
These concerns were on my mind as I waited outside the ER for updates on my husband. It took a half-hour for the triage nurse to call, and an hour to hear from an ER physician. Only then did my husband get a CT scan of his brain — a delay longer than the American Heart Association’s maximum recommended wait time for neuroimaging suspected stroke victims. The scan, thankfully, was normal. My husband was admitted to the hospital, and I was sent home.
The next morning, I became panicky when I was unable to reach my husband on either his cell phone or room line. When I called the unit, I learned that the neurologist had obtained an incorrect medical history from my husband. I was outraged at the absurdity of a physician relying on a medical history recounted by a patient who was admitted with memory loss. Only after numerous calls, including to the hospital’s vice president of nursing, was I able to get the neurologist on the phone.
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Ultimately, my husband fully recovered from his peculiar amnesia, and he’s now back home. But not everyone is so lucky, and my experience underscores how daunting it can be to advocate for a hospitalized loved one from afar. As an experienced physician myself, I’ve previously helped others navigate care, a task that has been rendered more complex by Covid-19. For those who find themselves in the unfortunate position of being isolated from a hospitalized loved one, here are a few tips:
• If you are concerned about your family member’s care, start by trying to speak with the unit manager. If that is unsuccessful, try “climbing up the food chain” of the hospital hierarchy. Ideally, hospitals will have a “patient advocate” or ombudsman clearly listed on their website. At those that don’t, it may take several tries to find the right person. Be polite but persistent in seeking to identify someone to support your advocacy. While you might feel like screaming, remaining calm and quietly insistent in your requests will likely get you further. The risk management department is often helpful. If conditions are dire, consider bringing your concerns to the hospital leadership or board. One way to gain visiting privileges might be to explain to staff how your presence can reduce their workload, by calming or feeding the patient, for example, or improving communication with someone who is nonverbal.
• Both you and the patient should have an emergency “go bag” containing copies of important papers such as contact information for family and physicians, insurance cards, and advance directives and power of attorney documents. The CDC has a care plan form that serves as a guide for gathering these documents. You should also place a note on the bag reminding both you and the patient to take a cell phone and charger.
• People who are already seriously ill might consider completing a Medical Orders for Life-Sustaining Treatment form, or MOLST. This is similar to a living will, except it can take force even while a patient retains medical decision-making capacity and would be honored by emergency medical technicians, overriding an advance directive.
• Pictures that show the patient as a vibrant individual with a loving family are vitally important for caregivers to see, especially if the patient is elderly or unable to communicate.
I was outraged at the absurdity of a physician relying on a medical history recounted by a patient who was admitted with memory loss.
There are also important steps that patients can take to advocate for themselves:
• Keep a list of your medications and allergies on you. You should wear a prominent medical alert badge if you are prone to serious reactions; otherwise you can carry the information on a wallet card.
• Question everything, and make sure your physicians clearly explain what tests and treatments they are planning. Give a family member or advocate permission to see your medical records and labs and speak with your physician. One person should be the designated person to communicate with medical staff.
• Keep notes on everything, including the names of your caregivers, the medications you’re being given, and notable test results. You will have to double-check that medications and doses are correct.
• Ask to have your nurse help you video chat or call your family. When the doctor or other care provider comes by, try to have your advocate attend via video chat or phone.
After my husband’s ordeal, I wrote the hospital’s administrators a detailed account of what had happened and gave them suggestions for improving care. I contacted additional staff, including the medical director of the emergency department and the director of emergency services. Although the hospital hasn’t fully resolved all the issues I raised about patient care, it indicated that it is reviewing its policies and taking steps to address the concerns. Hospital officials say they will establish a clearly identifiable patient advocate position and institute a policy of making a daily check-in call to each patient’s designated contact person.
My experience underscores how daunting it can be to advocate for a hospitalized loved one from afar.
Other institutions are also taking steps to promote patient advocacy in the face of the pandemic. Some, like the University of California, San Francisco Medical Center, have carved out exceptions to visitor restrictions for patients with communication limitations, including those with dementia, neurologic impairment, or disability. (An obvious problem, however, is that these exceptions are not always clearly advertised to the families.) UCSF is also one of several hospitals that offers patients equipment and instruction to connect digitally with their loved ones.
These are small steps that may nevertheless go a long way toward relieving the stark emotional toll of Covid-era hospital visitation policies. Studies in ICUs during the Covid pandemic have found that family members of patients suffer heightened anxiety, depression, and PTSD when the patients are cut off from visitors. Wrote Samantha Gelfand and Richard Leiter, palliative care physicians at Brigham and Women’s Hospital, in a January opinion piece in STAT, “If we fail to act now, the pain of losing loved ones as they die in isolation will be a grim legacy of this pandemic.”
As we better understand transmission of Covid-19 and as we stockpile adequate supplies of masks and personal protective equipment, I hope that more hospitals will recognize the importance of family-centered care. And I hope the multitudes who have been thrust into the role of supporting loved ones from afar will recognize that, even if you can’t be by the bedside, you can still be a fierce advocate.
Dr. Judy Stone is an infectious diseases specialist and science journalist. She is the author of “Conducting Clinical Research” and “Resilience: One Family’s Story of Hope and Triumph over Evil.”
UPDATE: Due to an editing error, a previous version of this piece stated Stone contacted the hospital’s medical director and the ER’s nursing director. She contacted the medical director of the emergency department and the director of emergency services.