On September 13th, the following two paragraphs were posted on the UC list:
>At the PSFS meeting this weekend, it was announced that long-time SF fan
>and UnivCity resident Dave Axler had bypass surgery recently. Since I've
>run into many local residents who knew Dave, but did not know about
>this, here's some info.
>
>"According to a posting on smofs*, he's at Beth Israel Deaconess Hospital in Boston Massachusetts,
>and he's recovering well from bypass surgery. He'll be staying at the hospital a few more days, and >then staying at an adjacent hotel for about a week while his doctors monitor his condition before he >returns home."
*[For those who don't know, "smofs" is a small-circulation moderated discussion list for the organizers of science fiction conventions]
I've been debating about the appropriate response to this posting, which had me as its subject. To be blunt, it should never have been made. Regardless of the intentions of the poster, the end result was that it caused me some problems that should have never occurred, and added new, unnecessary stress to an experience that was already extremely stressful.
I considered just responding to the poster, off-list. But, after discussing this with a number of close friends who have gone through similar hospital experiences, it's become clear that some folks out there just don't have a clue how to deal with other peoples' medical situations. So, in the hopes that I can spare someone else in the future a bit of the aggravation that I experienced, I'm going to respond here on the list. (It's a somewhat belated response, but that won't affect its accuracy.)
Let me start with some basics. While these are generalizations, my conversations with others suggest that they're true for pretty much any extended hospital stay, with two possible exceptions: women delivering babies (where congratulatory phone calls are rather common) and those patients who go into the hospital expecting to die.
To start with, one of the first things that hospitals require when you arrive and "check in" is to provide them with the name and phone of a contact person. Primarily, that is to ensure that there is someone who can make critical decisions while you're unconscious or otherwise incapacitated. In addition, that person is also the patient's spokesperson. If someone calls the hospital and asks for a patient at a time when the patient is in the operating theatre, the ICU, or otherwise incommunicado, the hospital can direct the caller to the spokesperson.
[In my particular case, because I was in an out-of-town hospital, I actually had more than one contact person. There was one relative who was local to the hospital, a second -- my brother -- who had the medical decision-making job, and a small collective here in Philly that was taking care of my cats and house during my absence.]
Typically, the contact person also takes on the job of notifying selected friends and family about the patient's status. The key word there is "selected". Unless one is a major public figure (e.g., Bill Clinton, who had his bypass two days before mine), there really is no need for everyone in the world to get regular updates. My contact people worked together to keep my family and close personal friends updated on my status and recovery via email. The list of people they notified was something they reviewed with me prior to surgery. It deliberately did not include any of the local Philly mailing lists such as this one, but did include some limited-circulation mailing lists in the science fiction world, simply because I had gone directly from an sf convention to the hospital, and many of my friends who were in attendance were thus already aware of the overall situation.
Second generalization: A patient, after surgery, has only one real responsibility: getting better. While the definition of "better" may vary, the basics are the same: Get as much sleep as possible, avoid stress, avoid pain, take your meds, and so on. Everything else is secondary. Anything from the external universe that works against this goal is to be avoided.
Third generalization: The reason that patients generally go from the operating theatre to an ICU, not the public wards of the hospital, is so that they will be in a protected environment while the initial healing takes place. I'm not just talking about protection in the medical sense, though that's certainly a major part of the ICU situation. An ICU patient is typically loaded down with monitoring equipment and other "attachments" -- for a cardiac patient, that typically includes a blood-pressure cuff that triggers every 10-15 minutes, a fingertip oxygen monitor, five or more leads of telemetry, nasal oxygen tubes, and, for the first couple of days, a chest-drainage tube and a Foley catheter. Movement is very limited in this situation, but the patient is often too groggy to be doing much anyway beyond adjusting the tilt of the bed and changing channels with the tv remote.
However, I'm really referring to a deliberate isolation from the outside world. In the ICU, visitors are very restricted, in terms of both number and duration. (In my ICU, it was two visitors at a time, for no more than ten minutes, though patients were allowed to extend the visit time to about a half-hour if they possessed the desire and energy.) Patients in an ICU do not have telephones at their beds. If a truly critical call (or one from the designated contact person) comes in, the staff can pass it to the patient via a hand-held phone. For less critical attempts to contact the patient, the staff will usually either provide a brief, general status report or direct the caller to the designated contact person.
The goal here is simple -- cut down the number of interruptions and distractions which the patient is experiencing. Let the patient sleep as much as possible. This is often hard to do in a hospital, what with the various background noises, the repeated nurse visits for drawing blood, the ways in which pain medication can muddle both your mind and your bowels (the standard side effect of most pain meds is constipation, along with "black, tarry stools"), and so on.
Once the patient is out of the ICU and back to the regular hospital wards, s/he will usually have a phone and be allowed more/longer visitations, up until the time of discharge. And that leads directly to ...
Fourth generalization: Even when a patient's back on the floor, he or she is still dealing with the immediate after-effects of surgery, and his or her focus is still on recovery. Therefore, unless you are the designated contact person, or you have life-or-death information to impart, there is only ONE valid reason for contacting a hospital patient: to help him or her recover. If you are doing it to satisfy your curiosity or to ease your own worries, you're doing it for the wrong reason. If you are unable to detect when a patient is growing tired or distracted, so that you can immediately and politely terminate your contact, then you have no business in calling or visiting to begin with.
In general, the concept is simple: let the patient lead the conversation, and pay close attention to his or her mental and physical state. Let the patient bring up potentially stressful topics, like hospital discharge dates, finances, or returning to work. Recognize that the patient may still be using pain-killing medications, and is not guaranteed to be clear-headed.
Also, don't wear the patient out -- as soon as the first signs of tiredness appear, make your exit. Yeah, the patient probably could ask or tell you to go away, but it's likely that s/he doesn't want to insult or offend you, and is too exhausted to take on the task of evicting you. Have faith that the patient will ask you to stay if that's his or her desire.
So, with all that as background, let's go back to what was posted here, and see what's wrong with it...
1) Primarily, the posting publicized information about my situation that caused me problems, in two different ways. First, it put my property at risk by effectively announcing that my house was going to be unoccupied for an extended period of time. Just as there are burglars who go on neighborhood house tours in order to scope out potential targets for robbery, so there are folks who watch local discussion boards for similar hints. When I found out about this posting, I had to arrange for extra precautions on the part of the friends who were keeping an eye on the house. This was a time-consuming bit of stress and aggravation that I really didn't need.
In addition, the posting led to a number of unnecessary and unwanted phone calls while I was still in the hospital during the early stages of recuperation. Several of these calls included whiny complaints about how I hadn't been available for phone chat while I was still in the ICU. (Gosh, what a surprise!)
The real winner of those inspired (or should I say "instigated"?) by this poster was the call that began with "I'll bet you'll never guess who this is!" Now there's a mindless and arrogant notion for you: the thing a patient wants to do while lying in a hospital bed is to play guessing games over the phone. Had I been a tad less groggy at that point, I would have answered "You're right." and hung up immediately.
2) It was unauthorized. The poster made no attempt to reach the hospital, my contact person, or myself prior to making the post, or to otherwise obtain even the most minimal confirmation that a posting on this list was desired. (Had the poster asked, the answer would have been a clear and unequivocal refusal.)
3) It was inaccurate. By the time the post was made, I was already in the process of moving from hospital to hotel.
4) At the lowest level, the poster was indulging in nothing more or less than gossip, under the guise of "reporting" some local news. Note especially the second sentence: "I've run into many local residents who knew Dave, but did not know about this..." Yes, lots of local residents know me, or at least know of me, but that did not justify the poster's going around and chatting "many" of them up to find out if they were aware of my situation.
