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."

[image credit: ffffound.com]

Is there anything I can do to help?

A few years ago, a friend's mother died. She was not just the mom of a friend, though, but a sweet, kind old woman who I had dinner with a handful of times, during a summer I spent in Seattle.

When she died, I froze. I waited a few days, to give my friend some space. They were so close, and they'd spent so much time together near the end; and we weren't such tight friends that I felt it would be right to call immediately. She was surely talking with family and her closest friends, making arrangements, mourning.

I waited another day or two, remembering how little I wanted to hear from others in the weeks after my grandmother died. Every time they offered their sympathies on the phone I started crying again.

And then, I started worrying: "Days have passed and I haven't called or said anything. Email is cold. A phone call is too invasive. The best thing to do, now, would be to send a card."

I bought a card, and then I looked at it for a long time.

I didn't know what to say.

I still haven't sent that card.

I have never forgiven myself for that.

Today, thanks to the kindness and wisdom of those around me in this difficult week, I know what to say, next time someone has a trying experience, falls ill, or dies:

"Is there anything I can do to help?"

My dad is doing a lot better. We're hoping he'll come home in a few days, and I am grateful for every minute that I still have both parents on this earth. Thank you for your stories and encouraging words. I read them and reread them at dark moments and they gave me hope. Thank you.

This whole week, I've gotten phone calls, texts and emails from people who shared similar stories and asked a version of this question.

"Is there anything I can do to help?"

It was so good to know people from the west coast to Eastern Europe were thinking about him and offering support. I didn't feel people were imposing or bothering me -- as I had worried my friend might feel, if I called. I didn't find the emails impersonal or not "meaningful" enough given the severity of the situation. Every new message from someone who cared was a caress.

And now I know what to say, next time something sad happens to someone whose pain I could alleviate.

"Let me share a story with you. And is there anything I can do to help?"

[image source]

Screw policy: Let us into his ICU room?

Ten feet from the pale green plastic reclineable armchair in which I write, my father is asleep.

Machines are helping his lungs breathe and his heart pump.

Familiar liquids seep through strange tubes, while the regular suck and blow of the respirator does the work his excavated body cannot.

It's been 18 hours since his heart attack, 8 hours since I landed in McAllen, Texas, to be with him.

He had two blocked arteries, which called for two surgeries. One open-heart: triple bypass.

I got to see to him before the second surgery. "It took a heart attack," he teased limply when he saw me. I held his air-conditioned hand, rubbed his back, and we talked about what he'd dream when he goes under. Greece. He went to Greece on vacation, last year, and calls the cliffside temple at Sounion the most sacred and beautiful place on the planet.

"The same wind that beats those rocks blew on the Greeks as they built this temple. You go there and time stops," he told me.

I answered with stories from recent travels and bribed him with the promise of grandchildren.

"Be strong, Tata."

"Sure."

Four hours later, the heart surgeon came out, looked me right in the eyes and nodded.

"No complications."

"We'll have him awake in the morning."

"I was actually surprised at how good his heart looked."

"All that smoking."

"Make sure he does his physical therapy and he should be able to leave in 5 days."

My eyes fell on the surgeon's hands. They moved subtly, efficiently, as he punctuated his message with minute gestures. But there was also something loose and soft about those movements, and it occurred to me that his control over his instruments is more precise and more nuanced than anything you or I could imagine. I wanted to kiss his hands.

The only problem, all things considered, is that the nurse in the ICU didn't want to let us into the room, saying that on the first night visitors are not allowed. My stepmother and I were there, and my sister is arriving in a few hours.

"You can stay for a minute. The first night is critical, so we want to be able to monitor him with no one in the room."

"I know the first night is critical, and he is extremely important to me, so that's why I want to be here."

"I know he's very important to you, and I'm sorry. We'll take good care of him. We'll wake him up tomorrow morning, so you can come back around 8."

That is when I told her his cardiologist and his heart surgeon gave the OK for an overnight stay, and we will stay out of the way, in that corner over there. If two or three people are too many, we'll take turns because we don't want to make their job hard. We simply want to be there, just in case.

I didn't say this, but here's what else I meant: I will stay in the room, because you don't fly 8 hours and watch your father get wheeled away on a gurney for his second heart surgery in 24 hours so you can then lie awake in a bed 2 miles from his hospital room and trust others to take very good care of him, hoping no one is under the weather that night, talking on a cell phone while changing an IV drip, coughing into a glove, getting distracted while adding a decimal point, pumping him with heavy sedatives if he starts walking up before 'schedule' or giving anything less than their live-giving best.

"That's our policy. Let me get the charge nurse so she can explain."

She left.

I picked up my cell phone and called his cardiologist, who had given me his cell number.

"Dr. S____? It's Roxana. I'm sorry to bother you, but you said I could call if I had any questions. The nurse is saying we can't stay in the room. You told me we could stay overnight, and I want to be there, especially because it's his first night after surgery, but she's saying that's against the hospital's policy. Can you please talk to her?"

I was flustered. He thought I was someone else. He asked me to repeat myself, which I did, more calmly. Then he asked me to put the charge nurse on the phone. She talked for a minute in hushed tones, then told me it was fine. We can stay.

So here I am. Ten feet from my sleeping, sedated daddy. Now I'm not sure what else to do but wait, hope, write.

[image source]

Wedding Priorities

Five things are non-negotiable:

1. The bride and groom.

2. The guests. We're not the kind of people to cut the wedding list in half so everyone coming can get nicer favors. Once we decided we'd only invite family and close friends, that means there is no room or desire to trim.

3. The budget.

4. The decision to get married in a church, especially since our families desire that.

5. Our compulsive desire party late into the night. We met at tango, we're both nightowls, and we both happen to have this vision of an espresso cart rolling in around 1 a.m., fueling a frenzied second wind...

Everything else -- the food, the music, the location, the season, the dress, the flowers, the presence or absence of a gypsy violinist to serenade the guests they imbibe a custom or non-custom cocktail -- is up for discussion. Not to say we don't have preferences (some of them strong), but as long as we consider every other element of the wedding as optional, we'll a) have more bargaining power and b) not make decisions that push us beyond our budget, regardless of that bargaining.

Next: The budget!

[image credit]

The Wedding Asking Challenge

In a few months, I will take the hand of Mr. A and not release it until either of us passes to the great beyond.

And that calls for a party!

I've heard that wedding planning is a minefield. Vendors jack up the price the second you say "family dinner on a Saturday" and everyone seems to have an opinion about what you should and shouldn't do, serve, write, stay, wear.

Fortunately, I'm used to pretending to carefully listen to opinions I don't agree with and then totally disregarding them. Growing up with a dad who has a drastically different political persuasion from my own has been perfect training. ;)

And fortunately, by now I'd consider myself a fairly experienced asker in the retail and service realms.

With this in mind, here I am going to outline a new project.

The Wedding Asking Challenge

1. Mr A and I will make a list of priorities and we will plan the wedding so those are met.  (DONE)

2. Mr. A and I will make a budget and do our best to adhere to it. (DONE)

3. I will try to negotiate every single item on that budget list, from wedding dress to ceremony music. Either I will bring down the dollar value or build more value into goods and services where the price stays the same.

4. I will make exceptions for vendors who are providing exceptional value. The point is not to extract money just because, but to get a non-inflated, non-wedding price for goods and services.

5. Every dollar that falls below the budgeted amount will go into an investment account which we'll use for a house down payment or another similar goal.

6. Along the way, I'll voice record some interactions and save all emails, so anyone planning a wedding (or similar endeavor) in the future can benefit from my experiences.

Ready? Set? GO!

[image credit]

How are you voting on Prop 19?

Last night Mr. A and I went to Jem and K-meister's house for vanilla bourbon tea.

A conversation about wedding planning took a sharp turn about an hour in, when we starting talking about project management of all things. Another hour later (it's a hot topic, what can I say) the evening was dying down -- it was past 11 after long days at work for everyone -- when I asked something out of the blue:

"How are you guys voting on Prop 19?" (Legalizing pot)

This was a leading question, since I could have guessed how they would vote the next day.

But that started a conversation that took us through various propositions, political ideals, budget concerns, social priorities. Democracy in action... Voters weighing the issues that mattered to them... Disagreeing, persuading, questioning, considering, arguing, listening, participating... It was a blast.

And now, before I get all misty eyed, let me wish all U.S. readers a happy election day!

[image source]

And all she had to do was ask

 

Today, at approximately 7:10 p.m., I did something not so nice.

I was at Trader Joe's and I had a small basket of items, and there was an abandoned cart full of stuff, hovering by the checkout line. The guy in front of it was paying, so I waited a bit longer and when no one showed up, I moved forward and prepared to unload my stuff.

When from behind me, I heard a shrill voice.

"Well GEE, that was nice!"

I turned around and saw a woman looking at me like I was the cheerleader who had stolen her boyfriend, the roommate who stealth snacked on her ice cream, the grad student who just 'borrowed' a few ideas from a labmate's email and put her name on the presentation.

A thief.

I had stolen her spot, while she was picking up a few items she'd forgotten.

It took me a second to react, because -- small world -- I thought I recognized her! Surprised, I took a closer look and saw it wasn't my old boss, but wow -- the resemblance was uncanny. And by the time I snapped out of it and started to move, she was gone, muttering something.

  

Yes, I cut.

No, I didn't get out of the way instantly.

But what if she'd said:

"Hey, thanks for watching my stuff -- can I hop back in now?"

"Excuse me, I was here before and I ran to get these lentils."

"Hi. Can I get back in line?"

"Are you in a rush? [No.] Then can I go? I've had a long day."

"The cashier didn't tell you? I asked him to hold my spot while I grabbed these."

Instead, she yelled and was sarcastic and I, surprised, didn't rush to oblige. She huffed away and I felt slimy.

What if she'd assumed we weren't antagonists (and recognized her cart at the front of the line was not a sacrosanct placeholder). What if she made it easy to resolve the situation in her favor?

I guess the lesson of sorts I'm extracting from this situation is what to do when someone pulls a fast one on me -- cuts me in line, gives me the wrong change, forgets (or "forgets") to follow up on something, does something jerky (or seemingly jerky). Sometimes I need to stick up for myself and shout GEE! But other times giving them an out, letting them save face, assuming they didn't mean to hurt me, asking for the desired outcome rather than threatening or demanding it, and generally making it easy rather than hard (emotionally, socially, physically, who knows how else?) to reach a positive resolution may be the best course of action.