Travel notes: Why visitors matter to hospitalized patients. (Or, why it was good for me to be around when Dad got appendicitis).
My father's appendix burst. I happened to be visiting the area. The help I provided had little to do with my being a doctor.
Last Thursday, my father called me to tell me he had abdominal pain and body aches. He’d recently had Covid-19 for the first time but had completely recovered. Still, Covid rebound was possible, so I told him to test himself. Result: negative.
He described a “donut-sized” area of pain around the middle of his abdomen with some tenderness on the right lower region. It was a classic pattern for appendicitis but when I asked him how much pain he was in overall, the answer was “very little.” No fever. No nausea. No vomiting. No other gastro-intestinal issues. Still negative for Covid on repeat testing.
I told him that it could be his appendix and to keep me posted. That night he had a fever of 100.5F but his pain had basically gone away. Tylenol helped. Same story on Friday, except his temp had gone up to 101.5F. “Stay the course, more Tylenol,” his primary care doctor advised. I agreed, especially since he told me on the the phone that his pain had improved and and he was eating and drinking without difficulty.
Then on Saturday, he had sudden terrible pain at around 5:00am. I learned of this via a voicemail he left for me around 7:00am from the ER at UC San Francisco, which I heard at around 7:40am when I woke up. He sounded totally fine. I called him. He said he no longer was in any pain at all, unless he moved.
Splendid, I thought. At this point I was fairly certain that he indeed had been brewing a case of acute appendicitis and now he had a burst/ruptured appendix. (That was confirmed a couple hours later.)
I happen to be visiting the area so I immediately headed on down to the ER to be with him for half the day. I didn’t think the clinicians needed any input from me, but in my experience, patients who have visitors get better care in a hundred imperceivable ways. It’s hard to say exactly how, but things just go more smoothly. It’s not really about the medicine, but rather about everything else.
While I was in the ER waiting with him, I basically achieved four things.
Remembering what the doctors told my Dad. After the morphine, he was always rousable, but dozing off frequently. “I think I took a nap,” my Dad said after being asleep for a whole 3 minutes. When the emergency resident physician asked him if we had been told the results of the CT scan, Dad said, “No.” But the surgical resident physician had just told us the results 10 minutes prior. Again, not that any of this would really matter. He was going to get the care he needed regardless. But patients sometimes need to be told things more than once—or have someone with them who can keep track of things. Being there meant I could communicate updates to my family (see below under #4) and remind him of what had just been said. (He was basically “with it” most but not all of the time.)
Getting a nurse to help him use the bathroom. Dad couldn’t find the call button. Again, if I had not been here, he would have been fine, but it just would have been far less pleasant. Eventually, he would have had to call out for help. While this would have been effective, having to yell out for a nurse to get to a bathroom in the hospital is just not a great scene. It makes patients self-conscious and no matter how reasonable of a request it is, nobody likes getting hollered at. Patients who have to yell to get the attention they deserve often unintentionally alienate their caretakers. It’s completely unfair that a patient resorting to yelling out for help is received as rudeness or an imposition, but it’s just the way of the world. So just by being there, I could walk over to the nurses station and politely ask for help. A couple of minutes later, someone was at his bedside disconnecting him from the IV and monitors and assisting him in the short walk to the facilities. Problem solved, uncomfortable 10-60 minutes (or much longer) averted.
Ice and water. Patients who might be going to the operating room are kept “NPO,” medical speak for “nothing by mouth.” But in fact, small sips of water and ice are just fine. (The surgery resident agreed.) Still, someone had to go and get that ice and a splash of water for him. As above, eventually a nurse or patient care associate would have done this for him. But again, my being there meant that I could simply walk over to the machine, pour some ice into a cup, and deliver it to him. I really didn’t realize how thirsty he had been (despite the IV fluids). After just a few chips of ice, though, he looked over at me with tremendous relief, like a person who had just had a painful splinter removed and said, “Oh wow, I feel so much better now!”
Communicating information to the rest of the family. I sent emails and made calls, updating people, and arranging a rotating visitor schedule so that all of these little needs would be met, even when I could not be around.
Probably the single most important thing a visitor can do is simply to keep a constant eye on a patient’s clinical condition. If my Dad started acting strangely, that could be an indication of a change in his clinical condition, or a reaction to a medication. Visitors provide not just company—they provide continuous observation, a set of eyes and ears—and a brain not clouded by IV morphine.
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So, my advice to anyone with a hospitalized friend or relative is this: maximize visitors. Two caveats, though. First, find visitors who will be helpful and calming (i.e., people who will not add stress for the patient). Second, visitors should resist becoming overly involved in the ongoing treatments unless truly necessary; haranguing a medical team is not the way to show that you care, unless something is truly amiss.
With good visitors, at a minimum, your loved one will have a few small things taken care of sooner, which can add up to a far more pleasant experience. (I have no idea what it feels like to have to wait for half an hour to use the restroom with a burst appendix, and I don’t want to!) At a maximum, visitors can keep tabs on things and catch errors, lapses, or changes which might really matter.
Remember, most of the help I provided had nothing to do with my being a medical professional. And that’s my point. I know that many of you reading this are not in medicine. That doesn’t matter. Many of you can do this! Just being there for someone does so much more than you could ever realize.
Thank you immensely for your ER Team support; I personally benefited greatly by a UCSF ER Team's physical trauma intervention while unconcious for 9 days & then an adroitly transferred to an "LTAC" on Day 31 for proper evaluation, then on to expert care for 2 months at a 3rd medical institution. Got all the way back to 105%. Long journey but, I had very strong family support with my previously executed Medical POA in their hands.
Hope your dad is doing well!