Sunday, August 17, 2008

The Patient-to-Patient Relationship

One of my long-time favorite bloggers, Dr. Rob of Musings of a Distractible Mind, has gotten a lot of press lately on Tara Parker-Pope’s Well blog in the New York Times. His posts on what six things doctors should know and how to be a better patient are insightful, practical, and, judging from the volume of comments they elicited, they touched on topics at the forefront of people’s minds.

I’ve written a lot about the doctor-patient relationship on this blog, and discuss in detail how to establish a successful partnership with doctors and become an empowered patient and advocate in Life Disrupted, and it’s wonderful to see these issues covered from the physician’s perspective.

I’ve spent a lot of time having appointments and tests lately (this recent health static also explains the slight delay in postings this week), and I can’t help but think there’s another angle to this larger discussion on relationships in health care—the patient-to-patient relationship. After all, from crowded waiting rooms and emergency departments to double-occupancy hospital rooms and rehab groups, we don’t just spend time with practitioners when we’re living with chronic illness. We spend a lot of time in close proximity to each other, and since we’re all in this together, there are definitely things we should remember to be better patients to each other:

1. Be punctual, and if not, proactive—Show up on time; one late arrival can often cause an ugly domino effect on subsequent appointments. I usually have an uncanny knack for getting on the road just when a lane has been closed, an accident has just happened, or some other traffic-inducing calamity occurs. As we all know, despite our best efforts and best intentions, life happens, and we can’t always control our arrival time. But if you realize you’re not going to make it in time, make a reasonable attempt to let the office know, and estimate when you think you’ll show up. This way, they don’t give away your appointment entirely, and might be able to make up the time other ways if they have advance notice. It’s the fair thing to do for all the other patients who do show up on time.

2. Cell phones are great in an emergency, but totally annoying in other settings—Loud ring tones and even louder telephone conversations have no place in a waiting room, ER bay, or hospital room. Besides the fact they might interfere with medical equipment, they are disruptive and distracting to other patients, who may already be anxious enough. Keep your ringer silenced and if you do need to take a call, step out into the corridor, the front entrance, or any other place where your personal business doesn’t infringe on someone else’s. I’m always attached to my cell phone, so reminding myself that I don’t have to answer every call or that I can call the number back from outside takes practice.

3. Triage exists for a reason--I can’t count how many occasions I’ve watched people become irate and even antagonistic when they’re waiting to be seen in the ER and others are called first, anything from sniping in their seats when other names are called to repeatedly (and loudly) badgering the front desk. Such behavior makes it harder for the rest of us, who are also impatient to receive medical attention and who are in pain, too. When we’re uncomfortable, scared, and anxious to be seen, it’s certainly understandable that we may get impatient, but the ER is not first come, first serve. That doesn’t make waiting for an X-ray of a broken bone or a CT scan for a painful abdomen any easier, but there’s a reason patients with more severe injuries or complaints jump to the head of the line—their lives may depend on it. As a related item, in a regular office waiting room, remember that many practices have patients in the same waiting room visiting different doctors—just because you’ve been waiting longer than someone else doesn’t mean you’re getting skipped, it just means that person is probably seeing another provider.

4. Remember there’s another side to the story--I’ve totally been that irritated patient in the doctor’s waiting room, annoyed that my appointment time has come and gone and worried about the work I’m missing. But I’ve also been that extremely sick patient who got worked in at the last minute because I couldn’t afford to wait, and my doctors couldn’t afford to delay diagnostic tests and evaluation, the patient who backlogs the schedule and takes up a lot of time. While I’m not always successful at it, when I start to get antsy and annoyed I try to remember the times the tables have been turned and other people have had to wait on account of me. I try to dial it back a bit, and be glad that I am there for non-emergent reasons.

5. Pay attention to social cues--Sometimes, there’s nothing better than some conversation in a waiting room. Whether it’s commenting on a headline, discussing patient education materials, or comparing notes on a similar condition or medication, polite chit chat or commiseration can pass the time and even forge temporary bonds. But you never know what’s going on in someone else’s life, what their health status is, what they’re worried about in their impending doctor visit, what other life problems are on their minds. Some days are just bad days, when people don’t feel like idle chitchat and don’t want to engage in conversation, and may not want to hear about the particulars of your condition. Be sensitive to those cues, and don’t take it personally if someone doesn’t reciprocate your friendly gestures.

6. Don’t make assumptions--I really believe that most people are well intentioned and that comments are made out of concern or curiosity, not maliciousness or spite. With that said, however, be careful about vocalizing snap judgments. One afternoon I was sitting in an infusion room, surrounded by four or five other patients who were also receiving IV medication. We knew we’d be together there for a few hours, and started chatting. The rest were older, and had the same condition and medication. I was there for something completely different, and they wanted to know why I was receiving the medication I was. I answered briefly, and one woman replied by saying, “Really? That sounds bad! You look too young to have that!” and, turning to the person on her right, added, “Doesn’t she look too young to have all that? Makes me feel lucky!” Um, yes. I know she didn’t mean any harm by it, that she was probably just surprised because I had something different than the rest and because she had a daughter my age, but in the moment, it still made me feel like a freak. Clearly I wasn’t too young for it or I wouldn’t have it, and I didn’t feel especially “sick” or serious, so her emphasis on how “bad” it sounded was unnerving. I know I’ve been guilty of the same thing, because sometimes our gut reactions rush to the surface and our responses can have completely unintended consequences.

Really this all boils down to common sense, but in our more trying moments when we don’t feel well and we’re frustrated, it’s worthwhile to think about what we each bring to the patient experience.


Lyrehca said...

Great, smart post. Hope you're doing well!

Anonymous said...

Great post as always. I've been in a lot of medical situations in the last five years and I see a lot of these things very frequently. The one other thing that I would say, which you did touch on with ythe triage and conversation points but which i have seen a lot recently is that it's important to avoide getting into a contest on who has the worst symptoms. I've seen people allmost get in a fight over who has the worst pain . It's always a situation I'm glad to see the end of.

Leslie said...

I think this is a great post. I wonder, too, how this applies to the blog world. Most of the time, I think, we really get what each other is saying, but sometimes, we just don't agree with the terms used, etc. Are there "social rules" that govern how patient bloggers interact with each other? How is this similar to and different from interactions in the "real world"? Anyway, thanks for this! Hope you're doing better!

Courtney said...

yes with the blog world! i'm fairly new to the blog world though i've been blogging for 2 years since my condition became a full blown problem. I'm just learning the social rules to blogging and have made some "mistakes" but with good intentions. People let me know my mistake but I think came to the conclusion my intentions were for self promotion. too bad.

Laurie said...

Thanks for the feedback! Puppybraille, so glad you brought that up. Would you believe I had a whole other paragraph titled "Illness Isn't a Competitive Sport" where I talked about just that? I had so much to say that I decided to keep it for its own post sometime and touched on it briefly. But seriously, how annoying is that? Who actually wants to "win" the sick contest? No one needs to listen to that type of complaining!!

Unknown said...

Laurie - Great points. I, too, was just in an emergency visit --when I was supposed to be in my office being interviewed by a reporter. I was so frustrated that I had to see the doctor that I could almost feel my blood boiling. Until, I stepped into his office and saw a how busy he was and yet he was making time to see me. That's when I remembered that I'm not the only one with needs and that I was pretty lucky that my doc would always find time -- even if I had to wait -- to fit me and everyone else in. But it is even harder for us with chronic illness to remember this -- because the visits are so much more frequent and disruptive in our lives. Rosalind Joffe aka

britta said...

This brings up a question I was when you leave a message for a doctor to call you back, how long is too long to wait for that phone call before you(I) call and say hey again?!?! Some people say I am too nice and wait to I have waited for weeks!


MJ said...

Excellent post, Laurie. Whenever my Migraine specialist is running behind, I remind myself that I'm often the patient who is needy enough to require hour-long appts and throw my doc off his schedule.

I started reading your book last week, at my doc's office, actually. I love it already. So much of what you say in there really resonates with me, and makes me feel less alone. So thank you!

Be well,

Laurie said...

Lots of interesting points here. Leslie, I do think there are rules, and I think it's a bit different online b/c people can hide behind the cloak of anonymity when they disagree.

Britta,I usually wait till the next afternoon after my first call, esp. if I am waiting for lab results. I don't want to bug them, but if I've been told they'll be back by then and I'm waiting on them to decide a course of treatment, I'll def. follow up.

Max Jerz, thank you for buying the book, and for your enthusiasm!

Anonymous said...

What an important topic, reminding us to see things from the other side, our doctors, the ER triage and each other.

I have found that the staff in doctors offices are extremely appreciative of a phone call if you are running late. I think it not only helps them with their scheduling, it builds a trusting relationship between you and the office.

I too am often the patient that sets the doctor's schedule off course. Remembering that sure grows patience when it's my turn to wait.

Enjoyed this post much. Hope you are feeling better.

Synchronicity said...

This is all really good advice. Excellent site you have here. I will have to come back to thoroughly read your postings.

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