Facing the Other Side of Hospitalization

Lessons from my wife's time in the hospital

If you’re new to this page, my wife Jan spent almost two weeks in the hospital because she had severe pancreatitis, likely caused by a gallstone. She was quite ill and very nearly landed in the intensive care unit.

Thanks be to God she is home and feeling a little better every day. I owe a great debt of thanks to everyone who took care of her, from transporter to tech, nurse to aide, NP to physicians and all the rest. She received excellent care.

She will have her gallbladder out this Thursday and we’re pretty excited about that. It has felt a bit like walking around with a time bomb, waiting for another stone to launch and cause chaos.

(The story of David and Goliath takes on new meaning when you think about the suffering even a tiny stone can cause an otherwise healthy human being!)

I can’t speak for Jan’s emotions during that time. She is very stoic. She deals with rheumatoid arthritis on a regular basis and had a couple of prior health scares that were also very unpleasant. I won’t pretend to convey her thoughts on her hospitalizations except to say that in general, she’s not a fan of being there. But who is? (Well, I have met a couple people but that’s another topic altogether.)

But I can make some observations about the whole experience, as both a family member and a physician.

Being in the hospital with someone you love is unnerving, to say the least. It’s particularly hard for a medical professional like myself to be unable to “run the show” as it were. This is doubly so for someone accustomed to the emergency department. We like for things to happen quickly. We know a little bit about a lot. (And maybe a lot about far too little.)

We don’t like to be on the sidelines. It causes us a significant anxiety; in part because having seen the worst of so many illnesses, we too easily assume that the very worst will happen.

However it can be very instructive. I remember the film, “The Doctor” with William Hurt, in which he played a physician diagnosed with cancer. The film depicts the way he learned to better relate to his patients.

https://www.imdb.com/title/tt0101746/

Having been a patient now and then, I agree that it can be very impactful.

But watching your partner, your best friend, your spouse or your child endure illness or injury can be its own remarkable education.

So what did I learn?

1. Fear. I learned that fear stalks the hospital. I was afraid. I knew that she was in good hands. I knew many of those involved in her care and I can’t thank them enough. But in a very real way I suddenly stopped being a doctor and became in no small part just one more family member fearful of every new symptom, every abnormal vital sign, every fever, every lab result, every scan. Many years ago she had a malignancy (long since cured). But I used the term “scanxity” (I’m sure I’m not the first) to describe the way it felt to review the results of images, worrying about new findings, new spread, new dangers. As physicians, nurses, PAs, NPs and everyone else, we need to remember that the normal ebb and flow of our work, the normal alarms and lab draws, all of that is alien to most people. And it can even be terrifying to those who know better. Like me. It’s especially terrifying when that best friend, the one with whom you share all your fears, feels too badly to talk. It was, of course, very unsettling to everyone who counts on Jan; our children, her father, her siblings, nephews and nieces, her friends. It’s easy to forget that our patients are all part of complex tribes of friends, families, coworkers and others. They are invariable more essential than we imagine. (Just ask their dogs…)

2. Sleep. There is no consistent sleep in the hospital. I know because I stayed about nine or ten nights in the room with her, sleeping in a recliner by her bed. No matter how much a patient tries to rest, no matter how much lip service we give to the importance of sleep, patients are awakened all night. They wake up to the sound of IV pumps beeping, to the sound of oxygen monitors, to the words “sorry, I have to check your vital signs,” and to the 3 am blood draw for morning rounds. Anyone who says “I think I just need to stay in the hospital so I can get some rest” is severely deluded. Anytime an illness can be managed at home, it’s a win.

3. Beds. Several nights Jan and I switched. That is, she felt better in the recliner than the bed. And frankly, I understood. Hospital beds, for all of their gadgets and gizmos, just don’t feel good. It was funny when a phlebotomist would walk in, look at me and say “I’m here to get your bl….hey, you aren’t her!” But she felt better sitting up. So, I have a suggestion. Any engineer who designs hospital beds should have his grandmother or grandfather sleep in it for one week. And any hospital purchaser who is looking at a system should do the same. Ignore the sales rep, ignore the ads, and sleep on the thing yourself. Then make a decision.

4. Pain. Jan had good pain management. Her nurses were great advocates in this area. Everyone who deals with patients who have painful conditions should become very, very good at managing that pain. This is something we do all day, every day in the ER. But not everyone has our comfort level with a variety of medications. For instance, we give fentanyl regularly, even giving intranasal fentanyl to children with painful conditions. We give ketamine for pain. We have many drugs in our “ER doctor bag.” This is equally important on the inpatient side. Patients can be nervous about asking for pain medication, but quickly learn that if they don’t ask for it they can end up well behind the curve and in much worse pain. Everyone in acute care should really work hard to become facile at pain management. Or they should consult a pain management specialist for assistance. Of course, it doesn’t help that medical culture is truly schizophrenic on the issue. Absolutely enthralled by the 0-10 pain scale, which we dubb “the fifth vital sign,” hospitals seem to set policies that make pain management complicated and leave many physicians, young and old alike, terrified of treating pain effectively. This is really a system problem. And an observation, not so much a critique.

5. Love. Friends and family matter. We had dear, cherished friends coming by routinely to encourage us. They would sit with Jan for hours so that I could go home for a bit. Friends from church checked in and visited. Friends sent flowers. Our children stopped to visit, even staying overnight so that I could go home a little longer and catch up. The hospital produces not only fear but loneliness. Calls, cards, visits, flowers, all of these things were reminders that we weren’t alone. Jesus says this in Matthew 25: 35-36: ³⁵ For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, ³⁶ I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

   It’s all too easy to minimize the “visiting the sick” thing, in an era of modern medicine and dedicated professionals. But to come and talk, to be with someone in their struggle, in their fear, in their loneliness, in their powerlessness, in their pain, to sit with them, this is to represent Jesus in person.

   As we sat there, surrounded by people who love us, I thought about the old, the poor and alone, with no one to run an errand for them, to bring them outside food if it’s allowed, no one to get socks or new pajamas, or even something to read. Visiting the sick matters.

6. Helpless. Helplessness is terrible. When Jan was in pain, in the worst pain, I felt worse than useless. All I could do was ask for help, and know that the staff were doing their best, caring not only for her but for dozens of other people with their own immediate needs. Sometimes the family members of our patients feel the same thing. They want to help the people they love the most and they become insistent and angry, frustrated and even more afraid. As professionals we need to recognize this and always do our best to honor it. I often think of the history of medicine. I wonder, with a shudder, what it must have felt like in ages past when all a person could do was watch their precious family member or friend writhe, cry out and often die, when there was nothing they could do. This still happens around the world far more than any of us would like to consider.

7. Communication. Communication is essential. The staff did a great job keeping us updated. But it helps that I speak “medical.” (It’s the Lingua Franca of my native land of Emergistan…of which I am self appointed life-long Prime Minister…I’ll explain another time.) In fact, my wife speaks it as well. However, many people do not speak medical and we have to slow down and explain things in a way that they can understand. I have often found that it’s helpful to speak in terms of wiring and plumbing; after all, that’s most of what we are.

8. Fitness. My wife has always cared about physical fitness. She lifts weights routinely. (Young men in the gymn have stopped and said “ma’am, you know that’s a lot of weight, right?” They sometimes walk away embarrassed after she gets started.) She takes her father to the gym twice a week and in fact, gave him rehab after he was on the ventilator with COVID and was told he’d never walk again. The point I realized is that she was strong enough to get through because she was already in good shape. I see all too many patients with zero fitness. Once they become ill they enter a spiral from which there is often little hope of recovery. Poor fitness, illness, hospital, minimal rehab, illness, hospital, worse fitness, illness, etc. If you can get in shape, do so. And do your best to stay in shape. It matters in ways you can’t imagine.

9. Faith: There was a lot of prayer. From our church, from our friends, from strangers, from our family. Not everyone who reads this believes that prayer makes a difference and I understand completely. While we do, we also understand that prayers aren’t always answered in the way we desire. The hospital was full of people whose prayers were not answered with help, hope or healing. But maybe, the point is also that prayer at least helps us to keep those we love in our focus. It makes us consider their trials, and may prompt us to act. It may also give us some perspective on suffering, and some hope for transcendence, when things don’t end up the way we hope.

10. Electricity: Jan’s last day in the hospital was the day that Helen came through. The power went out. The hospital was on generator backup. The water pumps weren’t working well. There was some food for the patients, less for staff and basically none for visitors. Our system is far more vulnerable than we like to believe. This isn’t anyone’s fault. But every such event should be a lesson in planning for the future. (Just ask the folks at Mission Hospital in Asheville, NC.)

    The modern hospital is a wonderful, terrible place to be. Without it, the level of human suffering would be unimaginable. I was very pleased that my wife had the care of such amazing professionals. Everyone was gracious and kind and did their very best to comfort her and help her to heal.

    But if we’re honest, we can always figure out new ways to do better, new ways to offer comfort and healing to the sick and injured in our hospitals.

    At least until such a time as we no longer need hospitals at all…that’s the dream, right?

    (I wrote about this once…)

    https://journals.lww.com/em-news/Fulltext/2014/12000/Life_in_Emergistan__Death_Takes_Another_Holiday.11.aspx

    Any suggestions you can offer based on your experience in the hospital? Feel free to leave them in the comments!