Post 88: A Fragmented Healthcare Anecdote (or Another Reason to Advocate for Yourself)
How would you feel if you entered a restaurant expecting quality service and attention...and then you experienced the following?
Hostess: (pointing to a table in front of her) This is your table. Your server is Mark, and he'll be with you shortly. Anyone in the group with allergies?
You: (pointing to the five year old standing next to you) He's allergic to peanuts and most tree nuts, so let's just say he's allergic to all nuts.
Hostess: Ok, I'll let your server know.
You: Thank you.
Five minutes later.
Server Mark: Ok, so that'll be four water's... and anyone here with a food allergy?
You: (pointing to the five year old sitting next to you) He's allergic to nuts.
Server Mark: Got it. I'll make a note of that. And I'll get those water's for you right away.
Fifteen minutes later.
Food runner: (holding up a plate of pasta) Who ordered the mac and cheese?
You: (pointing to the five year old sitting next to you) That would be him.
Food runner: Ok, here's your mac and cheese, little man! And here's walnuts on the side as requested...
You: Uh no! He's allergic to most nuts. We said no nuts at all.
Food runner: Oh ok, I'll remove the walnuts.
You: Are there walnuts in the mac and cheese?
Food runner: Did you tell your server he has a nut allergy?
You: Yes, I told the hostess and the server.
Food runner: Ok, then. There shouldn't be any nuts in the mac and cheese.
You: How would I verify?
Food runner (in a clipped tone): If you told the server, there shouldn't be any nuts.
You (backing down because you realize the person in front of you is not going to accommodate your concerns): Ok.
Food server leaves.
You: (turning to the child next to you) Hey, let me have a taste first, okay? I just want to make sure there aren't any nuts. (takes a spoonful) Okay, it's good!
Ten minutes later.
Manager: How is your meal?
You: It's good, thank you!
Manager: (turning to the child sitting next to you) I see you got the mac and cheese! That's one of my favorites, especially with the walnuts for that extra crunch and nutty flavor.
You: Well, actually, we got the mac and cheese without the walnuts. My son has a nut allergy.
Manager: Oh, ok. Well, the mac and cheese is also very good without the nuts!
You: Well, walnuts were brought out on the side with the mac and cheese, and the server assistant didn't seem to know about my son's nut allergy. Is there a way to let everyone know about a customer's allergies or food concerns so that something like this doesn't happen again?
Manager: Honestly, the best thing you can do is bring it up again and again. The restaurant industry is so fragmented, you see, and information like this often gets lost.
You (feeling unsettled): All right. Thanks for the heads up.
Unfortunately, conversations like this play out every day in various healthcare settings. I recently was involved in one such conversation when I met with the daughter of a patient with severe dementia during a palliative care consultation in the hospital (read Post 1: What Exactly Does a Palliative Care Specialist Do? and Post 44: When a Palliative Care Consult Could Help - Eight Hospital Scenarios).
Palliative care physician me:...and had he completed a medical power of attorney (MPOA) form?
Daughter: Yes, I gave a copy to someone in the ER yesterday afternoon. They said they'd scan it into the medical chart.
Palliative care physician me: I checked your father's paper chart in the nurse's station, and I didn't find the document there. Perhaps the person in the ER had sent the MPOA form directly to Medical Records to have it scanned. If so, that can take about 3-4 days.
Daughter: Oh. Well, I have another copy here if you need it.
Palliative care physician me: Yes, thank you. I'll make a copy of it and place it in the medical chart he has here on the floor so it's readily accessible to everyone.
Daughter: That sounds good. And you can keep that copy! I have more.
Palliative care physician me: Ok, thank you.
Twenty minutes later, after placing a copy of the MPOA form in the patient's medical chart, I directed the daughter to the social worker's office because of specific questions she had for the social worker. I stood nearby and dialed a number on the phone to answer a page.
Social worker: (turning towards daughter) I'm glad you're here! I'm about to send referrals to rehab facilities for your father. Do you have his medical power of attorney?
Daughter: Well, I am his MPOA. I gave a copy of the MPOA form to the nurse in the ER and I gave one to the palliative care physician.
Social worker: Oh, do you have any extra copies?
Daughter: Yes, yes I do. Here's a copy of my father's MPOA.
Social worker: Ok, thanks. I'll work on sending out these referrals. Did you have any questions?
Five minutes later as I am walking down the hallway, I run into the daughter leaving the social workers' office room.
Daughter: Thank you for meeting with me today! You really helped clarify things for me. I feel like I have a plan now.
Palliative care physician me: You're welcome. I'm really glad our meeting was helpful.
Daughter: Before you go, I wanted to say that one thing I've noticed about our hospital stay so far is that I seem to have to repeat myself over and over again. Like the medical power of attorney...isn't information like that important? Shouldn't it be all over his chart?
Palliative care physician me: Healthcare is so fragmented, you see, and information like this often gets lost. At this time, the best thing you can do with important information is to bring it up again and again as you advocate for the medical care that's best for your father.
And this is a recommendation I find myself repeating. Information at your primary care physician's office may never make it to your hospital teams, and information relayed to you by your hospital teams may never make it to your specialist clinics. At this time, given how fragmented our healthcare system is, part of advocating for your best care may entail repeating yourself again and again.