Along with holiday travel, we might expect a bump in the numbers of illnesses due to COVID-19 and other respiratory infections. While cases are relatively low at the moment, Michael Hoerger, director of the Pandemic Mitigation Collaborative , estimates through modeling that about 1 in 118 people in the U.S. are actively infectious with Covid. Travel will spread infections widely.
“If gathering with 10 people for the holiday, know there’s about an 8% chance at least one person would have Covid if no testing/isolation,” Hoerger tweeted.
Surviving a hospital stay is increasingly difficult, given staffing cuts and changes in practice patterns over recent years. I wrote about this some years ago (link) and felt a need to update this based on recent months acting as a patient advocate for two of my dear friends.
You must have a knowledgeable and assertive advocate. If you don’t, here are my best survival tips, based on my years of experience as a physician and, unfortunately, as a patient advocate and caregiver.
My friends were in two different hospitals.
Managed care patient’s story
DF1 developed fatigue, shortness of breath, and weakness. She is in a managed care system, which presents unique problems. Many companies have such systems, including Highmark Health, UPMC, Intermountain Health, Cleveland Clinic, Mayo, and Kaiser Permanente. These vast corporations share one thing in common. They all work by giving patients a primary care doctor who acts as a gatekeeper for access to specialists and some expensive testing.
For DF1, this meant that for six weeks after she shared her labs with me, the gatekeeper did not send her to the appropriate and obvious specialist for her problem.
DF1 developed steadily worsening symptoms and lab abnormalities.
She went to urgent care, and the doctor there immediately diagnosed a fairly advanced cancer and sent her to a local hospital—one with a less-than-stellar reputation and where my mom had received terrible care.
Despite our worries, DF1 received generally excellent care from the staff at this hospital. Her diagnosis was confirmed, and she received very good supportive care and cancer treatment. With her permission, the hospitalist or oncologist called me almost daily to update me, and I, in turn, translated medicalese to her family and answered their questions.
There were some problems that any patient is likely to encounter. For example, the oncologist said that DF1, her family, or I should ask any questions via the Managed Care’s patient portal. However, DF1 was too ill to do so, and no one had told us this until well into the hospitalization. It wouldn’t have mattered because, despite hours wasted with calls and emails over weeks, neither the family nor I could gain access. On the last call, I was told that DF1 would have to go to the organization’s medical records department in person to arrange this.
There were different nurses daily and frequent changes in other staff. DF1 said, “The inconsistency in care and knowledge was all too apparent.” The weekly change in hospitalists and oncology doctors caused some problems with a lack of continuity (though far less than I’ve seen with other patients since, in this case, they were following a protocol for treatment). This high turnover pattern is increasingly common as private practice physicians are forced out of hospitals, and large corporations focus on business models rather than patient care, relying on shift work from employed physicians.
DF1 suggested a patient’s handbook detailing what to expect and what you might ask for. She observed, “For people who have never been in a hospital, it is a scary, unnerving, debilitating experience and, with just a bit more planning, doesn’t have to be.”
Patient with no choice of hospitals
DF2 landed in the emergency room of one of the University of Pittsburgh Medical Center’s sprawling network of hospitals, which has now metastasized outside of Pennsylvania. She had severe abdominal pain and vomiting, but no gastroenterology specialist was on call. The Emergency Room staff attempted to transfer her to three different hospitals, each ranging from 1.5-3 hours away. Still, no beds were expected to be available for more than 48 hours.
One of our concerns is that the medical staff caring for her were not wearing any masks, let alone N95s. There was a Covid patient in the next room in the ER. The medical director said staff would, but only if patients requested masking. I again asked what happened with patients who were too ill, confused, or unable to communicate. As her patient advocate, I called the floors she was transferred to and, each time, was told, “But we don’t have to mask!” There are no mandates. And each time, I tried to explain that masking is an ethical responsibility to protect your patient, as is handwashing.
Thankfully, there was a good surgeon on call and my friend did well, avoiding infection during her stay.
Tips for all patients and families
There are universal lessons on how to protect yourself, especially if you don’t have an assertive advocate:
1. It’s essential to have a list of your most significant medical problems, like diabetes and hypertension, in your purse or wallet.
2. Also, have a list of your medicines for each diagnosis. Include vitamins and supplements. With new medications in the hospital, ask what you are getting and what they are for. Keep notes about this and information gleaned from visits from the doctors.
3. Know your allergies and what kind of reaction you had. Severe reactions like hives or trouble breathing are critical. Saying you are allergic because you had an upset stomach will likely lead to your getting more toxic antibiotics than necessary.
4. Before you become ill, give a relative or advocate permission, in writing, to see your medical records and labs and speak with your physician. Also, plan for a durable medical power of attorney—someone who can make decisions for you if you are too ill. Living wills have too many loopholes, so I encourage the 5 Wishes form to make what your wishes are explicit.
5. Insist that healthcare workers wear masks in your room, preferably an N95 rather than a surgical mask. There is a growing problem of HCWs refusing to mask, risking giving you a hospital-acquired Covid infection. Also, insist that staff use hand sanitizer or wash their hands before touching you. Get IVs and tubes or catheters out as soon as possible.
6. Ask why they want to do tests or treatments. If it doesn’t make sense to you, get more information. Understand that you have the right to refuse tests or medications.
7. Ask for help getting to the bathroom if you feel unsteady, especially at night. Don’t risk a hip fracture or head injury. Falls can kill.
8. Hospitals will try to rush your discharge. Try to get a plan that is safe. Do not allow a discharge on the weekend unless all the home health services you need are already set up.
9. If you are concerned about your care, you might speak with the unit’s manager, the hospital’s ombudsman, or the Risk Manager.
10. It’s especially important for elderly patients to have family pictures displayed. This will hopefully remind the staff that an old patient is a real person with a loving family and that they were active. It encourages them that you might regain that vibrancy. Too many are dismissive of the elderly or disabled.
I hope you find these suggestions helpful. More details are given here: link.
