How should healthcare professionals act when they (or their loved ones) are patients?

November 17, 2010 11:04 AM

Health-care workers of MeFi: how do you act around doctors when you or a family member is receiving care?

I am in my final semester of nursing school, with a focus on oncology. Two days ago my mom was diagnosed with breast cancer. I'm going with her to meet with the surgeon, and I have a million questions. I feel like my knowledge about cancer will make me a better advocate for my mom, but I don't want to jeopardize her care by annoying the doctors. They're the experts, to be sure, but I know a lot more about this subject than the average patient or family member.

So, I'm new to the healthcare arena. What is expected/acceptable behavior when a patient or family member has more than a lay-person's knowledge about their condition? How do I use my knowledge to be a great advocate for my mom, without causing problems?

Private answers can go to [e-mail]. Thank you!

posted by anonymous to Health & Fitness (18 answers total)

I'm not a health-care worker, but doctors and surgeons spend their whole days talking to other doctors and surgeons about medical stuff. They won't mind going into a bit more detail with someone more knowledgable than the usual patient. If anything you will probably be less annoying than a patient who has read the Wikipedia article on their condition and now think they're an expert.
posted by EndsOfInvention at 11:11 AM on November 17, 2010

My wife is a former midwife, her ex was a Dr.. Her knowledge about medicine is pretty comprehensive.

She always asks intelligent questions, she makes it clear she has a good understanding (which results in more complete and deeper information). She never argues with the physician or nurse, but clearly advocates for the best interest of the patient.

If this approach causes problems, it's not YOUR problem, and YOU did not cause it. At that point ask to speak to a patient advocate at the facility.

My best to you.... I hope it goes well for your mom.
posted by HuronBob at 11:13 AM on November 17, 2010

Ask your questions-- her doctors should be accustomed to talking to anxious family members. Some families are better versed in medical vocabulary for all kinds of reasons.
posted by pickypicky at 11:14 AM on November 17, 2010

I use to work in a hospital (a grunt worker, not of anyone important) and nurses as well as doctors expressed frustratuon and annoyance on multiple occasions of patient families attempting to 'know better' than the professionals taking care of their loved ones. Its good to have questions and be there for your mom, but love ones of patients should understand their limited role in providing care when faced with this situation.
Don't step on the toes of Doctors and nurses providing care.
posted by handbanana at 11:15 AM on November 17, 2010

First, I'm so sorry to hear about your mom's recent diagnosis. I've been there and it's tough. Hang in there.

As a medical student, I've thought a good deal about this very thing. Here's what I've decided.

I think it's fair to let the healthcare team know that you're a nurse. Doing so (with occasional reminders) should encourage them to speak to you in the language of medicine. I would actually say, "I speak the language. Talk to me like a doctor." If you have questions, be specific...

"Can you tell me exactly which nodes you removed?"
"Can you tell me what grade and stage mom's cancer is?"

In the end, you shouldn't annoy anyone if you are very clear about the information you'd like to receive and you are not asking questions with an accusatory tone. If you ask questions with the best of intentions and a pure heart and people get angry anyway, piss on 'em - it's your mom, not theirs.

Best of luck to your family and your mom in her treatment. Keep us posted.
posted by stuboo at 11:15 AM on November 17, 2010 [2 favorites]

My wife, an RN, never hesitates to ask away, and I think everyone in our family is better off for it.
posted by imjustsaying at 11:17 AM on November 17, 2010

many members of my family, myself included, have received better healthcare because my mom is a doctor and: (a) asked good questions that i would not know to ask; and (b) knew who to talk to at the hospital if someone was not receiving the best care. this is about your mom and your family, and you have every right to advocate for yourself using your knowledge (always with respect, of course).

sending my best thoughts to you and your family, especially your mom.
posted by anya32 at 11:19 AM on November 17, 2010

I think it's fair to let the healthcare team know that you're a nurse. Doing so (with occasional reminders) should encourage them to speak to you in the language of medicine. I would actually say, "I speak the language. Talk to me like a doctor."

Agreed. My father recently died of cancer, and my mom, a very accomplished RN consultant, spent the entire time annoyed at the hospice nurses for talking to her like she was an idiot. Why she just didn't say, "Hey, I've been a nurse for forty years," I have no idea, but I think it would have made a lot of difference.
posted by something something at 11:21 AM on November 17, 2010

Patients that are with family members tend to speak less than patients that are by themselves. The more a family member speaks, the less comfortable the patient is in speaking. This happens a lot. One of the hard things about illness is losing control of one's situation, and I don't like to see that exacerbated. I like to see people maintain as much self-determination as they're capable of.

So I think your first priority is going to be to not silence your mom in any way. You can do this by waiting until the very end of any meetings, after your mom has listened carefully and asked all of her questions, to ask yours. If your mom is capable of speaking up for herself (and almost everybody is, even if in their own unique ways), then attempts to speak up on her behalf will tend to silence her.

When I accompany family members, I try to remain as quiet as possible. The most useful thing I can do is to listen carefully and help explain what happened, what the doctor said, after the event. If I think something hasn't been dealt with appropriately, I let my family member know, in private, so that they can choose to deal with it however they want. If they ask me to intervene, I will, but I won't without their permission.
posted by nathan v at 11:33 AM on November 17, 2010 [14 favorites]

Ditto nathan v, I've seen this happen in my family, with the extra effect of the doctor just addressing the person with medical knowledge rather than the patient.
posted by carbide at 12:30 PM on November 17, 2010

Agreed with the answers above advising you to ask all the questions you'd like. Not sure I agree with the 'talk to me like a doctor' part. One thing we are actually taught in med school is that if you are taking care of a healthcare worker, not to assume that they know things and throw jargon around, because they may be ashamed/shy to admit that they don't know what you're talking about precisely because they work in healthcare.

Even though I am a physician, I know that there are many areas of medicine that I am not very familiar with, I have my own area of expertise and I would not want an oncologist to talk to me like an oncologist, because I am not an oncologist and I don't know their lingo. So if I take care of an oncologist, I am going to talk to them like a well educated lay-person, because I don't want to alienate them by talking technically in detail about emergency medicine stuff they may have glazed over in internship many years ago.

It doesn't sound like you're shy or have a problem letting people know you have a question, so I would advise that the best way to get what you want and to get your answers is to be polite, respectful, and assertive - don't feel bad about asking what med is being given and why, or why something can or cannot be done. Mistakes are made, as you well know.

Specific advised things to say or not say:
"Dr. Bunny, why is it that you've decided on this treatment plan? I am curious because I've heard of another way of treating this, and I'd like to know all the pros and cons."
vs. NOT: "Hey, Treehorn! I read on WebMD that breast cancer is treated with medication X, so that's what my mom will be needing, if you don't mind writing that prescription for her now."

"My mom is having this rash/nausea/X symptom. I've seen this happen before with X med or learned in nursing school that sometimes you can get that in situation Y. Do you think that is the case for her?"
vs. NOT: "Can't you see that my mom has XYZ-rare-disorder-I've-heard-of-on-the-interwebs? She's feeling lightheaded, dizzy, funny, 'not right', tired, pain all over, and nausea, and all of those things can happen with zebra-medicalitis!"

"Dr. Bunny, my mom's pain is just not well enough controlled on this medication. She takes it as prescribed, but it seems to wear off about an hour before the next dose is due. Let's make a better plan to take care of her pain because it is really affecting her quality of life."
vs. NOT: "Listen, I've made a list of the narcotic recipe that my mom needs, we want her on a pound of morphine daily."

:-) I'm kidding. mostly. Those are the kinds of things that people say that can bug you.
posted by treehorn+bunny at 12:30 PM on November 17, 2010 [2 favorites]

One more thing.

When I'm accompanying a family member to something medical, I don't usually tell people I'm a medical professional. What other people have said about being open with your knowledge makes sense, so it took me some thought to figure out why I avoid identifying myself.

It's true that sharing my qualifications would ease communication between myself and the doctor/therapist/nurse whatever, enough so that more complicated ideas could be communicated. The thing is, while I may be a nurse, my family member is not-- and the communication should almost always be happening for the benefit of my family member, not for my benefit. If I see a doctor and he or she feels free to use jargon and medical details, then my family member can't really know what's going on. Yeah, I can explain later, but it turns it into a game of telephone, and it isn't really fair to my family member.

There can be exceptions to this. Your questions and feelings aren't unimportant. Sometimes, it might be worth it for you to act as a link in the chain of communication. But in general, it should be about your mom.
posted by nathan v at 12:45 PM on November 17, 2010

Sorry to hear about the news and I wish you and your mother all the strength in the world.

In addition to the actual care plan (which I think has been well-considered by treehorn+bunny nathan v, and stuboo), consider also the non-treatment aspects of your mother's care that you are uniquely-situated to handle. Having spent time in hospitals, you can help navigate the bureaucracy and connect your mom with different services she may need. If (God forbid) things should take a bad turn, you will be able to speak frankly and knowledgeably with your mom about her advance directive. Finally, the same capacity for empathy that drove you to your profession will be a great source of comfort to your mother. Be that calming touch, that shoulder to cry on, that open ear.
posted by The White Hat at 12:47 PM on November 17, 2010

Also dittoing Nathan v. I work in a hospital and attended some medical appointments with my mother-in-law. I mainly saw my role as to advocate for her and to convey questions that she wasn't able to express. I was also able to remember the appointment in more detail than her and her husband and translate a couple of things after.

I generally didn't mention my profession - it wasn't really relevant to the consultation, though it was more tangential than in your case.
posted by *becca* at 12:51 PM on November 17, 2010

I have been in this situation many times, including taking care of family members of people I work with every day. I have also been the family member of patients as well, so I have dealt with this issue from both sides. Here is how I approach it:

From the physician's perspective: I don't believe in "VIP" treatment; if it is good enough for out everyday patients it is good enough for one of us (otherwise we should be bringing our standard of care up for everybody, not just colleagues or other important types). I start by giving the same spiel I do to everyone, describing what will happen in layman's terms as much as possible; even if I know there is a medical person in the room. I do this because there are often other, non-medical people in the room and because just because a person has a medical background, they may not be all that familiar with my specialty. Sometimes I don't know that a patient or family member is in the medical field, but I can usually tell pretty quickly when they start asking detailed questions that I don't usually get. That is fine with me and I will discuss their situation in as much or as little detail as they want. Some medical people want to know every little detail, others just say "I've been there before; I know what to expect". I am comfortable enough with what I do that I don't get intimidated or annoyed very easily and I often appreciate it when someone in the family has some medical knowledge they can share with the others.

From the family member's perspective: I don't expect special treatment for the reasons noted above. I let the physician do his talking, then I let everyone else ask any questions first. If I start talking shop too early it tends to leave the non-medical people in the room behind and it can be easy to forget that basic medical knowledge we take for granted is not shared by everyone. Finally, if I have any questions or comments (and I always do) I bring them up and generally go into more depth than the average person, but not great detail if I don't need it. I make it a point to try and not come across as telling them how to do their job; I am on the receiving end of that enough to know how annoying and unproductive it is. I always make it a point to thank them for their time and care. If I disagreed with something I would not hesitate to mention it, but in a polite manner; once when my daughter was in the hospital overnight for a minor infection a respiratory therapist came in to give her a breathing treatment. Since that had nothing to do with the problem she was in for I firmly insisted that she recheck her orders and that I did not think my daughter needed that treatment. It took a few times repeating myself but eventually she looked and realized the treatment was for someone else. So don't be afraid to speak up if you don't agree with something. If they can't explain why they are doing it to your satisfaction, then perhaps they shouldn't be doing it. A competent, confident doctor (or other health care worker should not feel threatened by your advocacy.

One potential problem in your scenario is that since your mother is presumably a competent adult, her health care providers may fear running afoul of HIPAA. This is not typically a problem when your mother is physically present with you and the physician, but may present problems when discussing things over the phone. Different organizations have different approaches to HIPAA compliance, so you might have to play it by ear somewhat if that becomes an issue.

Good luck; I hope things go well for your mother.
posted by TedW at 1:11 PM on November 17, 2010

Waiting for the care providers to finish what they are doing or saying is key. Unless they walk in with the giant syringe and you want to know what it is- ask them first before they start. "Why did you do that?" is more annoying that "what are you going to do?"

Second, when question time comes, prod your mom to ask her questions. Almost all patients have questions they forget or get intimidated to ask, so just being that "weren't you going to ask about the undercoating" person can be very helpful. Also, being a patient is unpleasant enough, make sure to keep the patient as engaged as possible.

Then ask your questions, but don't let the conversation go over mom's head. Reframe jargon so your mom can understand.

And good luck!
posted by gjc at 6:53 PM on November 17, 2010

I'm an RN and am usually reluctant to self ID when me or a family member is receiving care. If the provider is doing their job really well, I find it's just not necessary. That's not to say I may not tip my hand with a couple pointed questions at some point, I just try to keep the shop talk between myself and the provider.
posted by klarck at 10:47 PM on November 17, 2010

I went to nursing school for 2 years and then decided it wasn't the career for me. However, I hate it when someone is doing something to me and doesn't explain why. I like having things explained to me - after all, it's my body and my health - so I ask the questions and don't worry about annoying the person. It's their job, whether doctor, nurse, or patient care aide, and they should take time to explain anything you want explained.

Any time someone hands me a medication and says to take it, or asks to give me a shot, I always ask what it is first, and then what it's for if I don't already know.

Another example is when I was in the ER a few weeks ago, I had 2 nurses poke me 7 times before they finally got a suitable IV started. I have a very obvious bright green vein in one spot in my arm, so I asked the nurse why no one ever tries it instead of digging for more invisible ones. She said that it was a surface vein and so would collapse more easily, but we went ahead and tried it. It ended up being my ugliest and most painful of the 7 bruises, but now I know why people just don't go straight for it!

Also, if you have a lot of questions, you might forget some. It will be helpful to write them down before you come in. When I was getting ready for major surgery (at age 20), my doctor took plenty of time in the office to address all my questions, from whether I'd be intubated during the procedure (yes) to what it would feel like afterwards (like I was punched in the stomach - I was worried it would feel like a knife cutting me).
posted by IndigoRain at 1:54 AM on November 18, 2010