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November 15, 2010

10 questions every patient advocate should ask during a loved one's hospital stay

I didn't intend this to be a medical blog, and if my reports about asking in a hospital context aren't your cup of coffee, please accept my apologies and check back later. My hope is that writing about my experiences here may help others, if and when they or their loved ones go through something like this.

Today we found out more bad news. Tata has congestive heart failure, one of a series of complications that will keep him in the hospital longer than expected. From what I understand, this means his heart is swollen and weakened. I don't know what the implications are.

I asked the nurse for details. I asked for an explanation. I asked for treatment options and finally I braced myself and asked what "failure" means. "Are we talking a week, six months? Please don't spare my feelings. I need to know."

"Please can live with with this for 20 years!" the nurse tried to reassure me.

Unconvinced, La Sorella and I took off from the hospital for a breather and we called our mother.

You may think I'm a bold or thoughtful asker, but my mama is the paragon of inquisitive acuity.

After reading Women Don't Ask and starting this blog, I told her how exciting asking can be. "Of course," she answered, as if I'd just informed her humans breathe oxygen.

When my grandmother was in the hospital for heart surgery two years ago, my mom kept tabs on every lab test, every exam, every clinical consultation. Today, my grandma is strong as an ox. Well, a petite ox-ette with big brown eyes and superhuman luck at bingo. I consider this a miracle, since she was teetering on the precipice of death in that hospital room, and I hold my mom largely responsible. My grandmother too, of course, for wanting to live with every ounce of her tiny body. But without mom's attention and zealous case management, who knows what the outcome would have been.

Here is what she told me.

1. Get a Baseline

At the start of the stay, ask for a copy of the results of baseline labwork: lipid panel, blood sugar, hemoglobin, x-rays, ct scan, vitals, and/or whatever is relevant to establish the patient's state at admission. This is both for your information and to make sure they're performing these critical initial tests.

2. Daily Documentation

Every day you should ask for a copy of all the patient's labs, all tests, all medications, input and output, temperature, medications, everything that's being tracked. Next of kin are entitled to these printouts, and you need to be reviewing new information before every doctor's meeting. Store these in a folder.

3. Procedures and Exams

Operation or exam? Learn what anesthetic will be used and why this was chosen over another one; learn what will be done and why, what organs and systems are involved, what the potential complications are, how this fits in the treatment plan and what next the course of action is. For every test, find out who assigned it and who's interpreting it.

4. What's Abnormal?

Whenever you get a new lab or exam result, ask the nurse or physician to point out what values are abnormal and keep a log. Also ask for context, explanations, course of action: How much out of the ordinary? Why did this happen? What could this be signalling? Is this concerning? How do we approach this? And ask about patterns -- getting worse or better? Maybe it's nothing to worry about -- but if it is, you should know.

5. Prescription Explanations?

Ask "why?" for every medication (or change in dosage). Jot that down.

6.  Turn to the Internet

Ask google books for info. For every diagnosis, investigate the differential diagnosis (what the feasible alternatives are). For every chosen treatment, find out what other choices are out there. For every prescription, learn the side effects. For every procedure, learn about post-op healing and complications. (Some websites are useful, but be careful what the source is and how reliable it is. I think medical textbooks are more reliable.

7. Diet and Physical Therapy

Ask the food staff what kind of diet the patient is on, and make sure it's consistent with the patient profile. Heart surgery? Low sodium. Diabetic? Low sugar. Weak lungs? Ask the physical therapist how the patient is breathing during the exercise sessions.

8. Doctors' Rounds

During meetings with doctors ask for explanations when you don't understand something. Ask for context with answers seem unidimensional. Seek to understand the big and little picture. And ask how every step is fitting into the overall treatment plan.

9. Dig Deeper

If you get a qualitative answer, ask for context:
"He's doing great." "Better than yesterday? Better than others with this condition?"
"His physical therapy didn't go so well." "Worse than yesterday? Worse given his new medication, which should have helped his circulation?"

If you get a vague answer, ask for specifics.
"It's very common." "What percent of people who had this operation get this complication?"
"You shouldn't worry, it's at the beginning stages." "What are the stages, and where does he fall?"
"We're monitoring it." "What are you looking for? What are your alarm signals?"

10. Ask the Patient!

This is the most important one, and something that overrides everything here. Unless the patient can't communicate or think for him or herself, remember that it's not your call. I found myself talking about "him" -- my dad -- right in front of my dad! It's so easy to see someone weak and vulnerable and want to step in and make decisions. To be helpful and competent. Many times, it's valuable to intervene. But no matter what, the patient needs to be involved in that conversation. Ask him how he feels -- that simple question can lead to valuable insights. And remember that ultimately the patient is the one who decides if he can handle the next level of physical therapy, wants another painkiller, will or won't go through with surgery, or prefers vanilla or chocolate pudding.

Closing thoughts:

Perhaps some readers in the medical profession will consider these questions inconvenient. "All these sisters and wives and fathers think they're doctors now that they have google. Second guessing, making me waste my time with elementary definitions." There is some truth to that. Trying to prove your expertise or acting like the medical staff are pulling a fast one on you isn't the way to go. But seeking information, showing you're aware at every juncture and making sure that all parts of the very complex medical organism treating your beloved patient are communicating and doing their best -- is.

When I got back to the hospital, I requested my dad's case history. The nurse said I need to go through the medical records office, which opens tomorrow at 8. And then he said, "When I was in the hospital, I asked a ton of questions. Why are you doing this? What is that medicine for? People around here don't do a lot of asking. They're trained to think of medical professionals as gods. It's great you're asking. It's so important."

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