There Are No Words: 2016.08.21

Documentation, Questions, and Visitations

Estimated Energy Budget: 2015–10¢; 2016–50¢

2015.08.21 Taking Note

This was a day of many words. Reading them now I’m reminded of them all, but whooboi, I didn’t realize I was pumping out such volume.

7:03AM

August 21st, 2015: Good morning.
Doctors will be here in a minute. Here is to a good day. :)

8:11AM

I usually wake up at about 6AM in hospital for meds and bathroom. I try to get together a list of questions and observations for the doctors — you know, so they feel like they’re doing something useful. :) It’s usually a shorter list, but I thought today’s would be something that would (a) help people build their own lists, and (b) let you all know what state I’m in at the moment.
I get them to use the sign in sheet every day now, and take notes beside their names. The questions were ready for them at 7AM. The answers I wrote in afterwards. #6 has lead to my right drain being pulled out already. As my Nurse A. said, “It feels weird.” After she pulled about 15cm of tube out of my neck (which did feel weird coming out!) she pulled out a clot of gelatinous red goo. It was the consistency of a Gummi worm, but flatter.
Anesthetic wouldn’t have altered anything about the drain removal — he was correct. Also, it was weird. On the plus side, I no longer have a pair of giant, inflatable bonus testicles hanging from my shoulders. It is just the one now.

12:26PM

An excess of vanity is not generally considered to be one of my flaws. I tend to care about being functionally clothed (recognizing that sometimes looking sharp is functional). That said, I found it really hard to post this picture, and the one yesterday. To me, this does not look like me. The LaryTube button doesn’t really figure into it at all — it’s the swelling, numbness, and altered motion of my face that make it hard to look at. (This is the least unflattering of a series of pics, by the way, not a bad one that I picked for effect.)
I’m still recording myself using the electrolarynx (EL from now on because it’s hell to spell) and working to do better with it. I’ll likely be using other tech to talk (including getting the vibrations from my throat instead of a device like the EL) but I want every bit of extra flexibility that I can get right now. It helps with short phrases especially.
Right. Livé and Anita are on their way here now. Livé hasn’t seen me like this yet, or been in the hospital. We’re working hard to make it mostly normal for her — but I’m still a little anxious about how she will react. I don’t want her to be scared of this place — or of me.

I recall being quite nervous about that visit. I paced around the room, trying to set everything up to be just right. There were a nice range of positive and encouraging comments. At 5:30PM, after the visit, I said:

It went fine. I set up a colouring station for Livé to use before they arrived, and wore the towel to obscure the scariest parts. We played with the electrolarynx (EL from now on) until she was comfortable with it. We talked a bit, coloured, played some games, and then had lunch (that’s an upcoming post). It all went well. She was a little scared by the EL because it is noisy, but we got on fine.

6:13PM — Enable Patient Record Keeping and a Sense of Self Control

As some of you know, for me design thinking is a way of life. I spent much of the day thinking about improving the process and making patients part of the team.

This morning I posted a list of questions that I made in the hour before the doctors arrived on rounds (at about 0710h). Based on some comments from various folks (including Sen-Foong Lim) I have three suggestions for hospitals to consider. These could be done in small trials for minimal money and effort and measurable outcomes on health (time of stay, pain levels, sense of well being, caregiver sense of connection to patient, for example).
#1: Event Notes
Every patient is given a blue clipboard with a pre-printed page. The date goes at the top of the page with the patient name. The columns are:
- Time: when it happened.
- Event: This could include drugs, food, wound cleaning, pee, sleep, bowel movement, visitors, pain, bleeding, appointments, procedures — whatever kind of event is relevant to the patient. For me right now ‘Standard Drug’ means 1000mg of liquid acetaminophen on a 4h schedule.
- Details: Any information relevant to the event. For the event ‘food’ I am noting when I have a box of slurry. I have a regular schedule, but it isn’t breakfast/lunch/supper.
When anything interesting happens, the patient takes a quick note. For the first little while the docs and nurses might need to help. There are gamification aspects to this that could encourage participation on all sides without there being any strict procedure enforced.
On the one hand, I need to take responsibility for my health and be part of the team. On the other, most people are not going to be able to come up with an event tracker on their own ever, let alone when in distress. I’ve been doing pretty well, but Wednesday was a write off for me taking notes and tracking what happened and when. I would have done much better if the template was just there at hand, and I was accustomed to using it.
This also gives me, the patient, a tangible demonstration of my participation as part of my health care team — and something that I control directly at a time when I don’t control much.

A year later I think this is still a really good idea. I’m going to set aside some time this week to actually make these sheets.

#2 Sign In Sheet
When a team of doctors and nurses descend on me when I’m just waking up and all declare they’re there to do something I don’t understand using words I have never heard before — not helpful. Sign in sheets deal with that.
This means every bed should have a sign-in sheet along with an event sheet. If you’re working at the facility, you make your mark on today’s sheet when you see me, noting the time and your purpose for visiting. Heck, you could have fancy stamps or stickers with your face on it instead of writing — but the basic ‘identify yourself and your purpose’ should be provided by the facility, not by the patient. As part of each row of the sign in sheet, leave a space for the patient to take notes.
This compliments the events sheet, giving patients another control point. By making visitors responsible for declaring themselves and making me responsible for making notes, we declare that we’re a team, and that I’m important enough for you to tell me who you are in a memorable way.

This made the Doctors really uncomfortable to start with. I don’t think they understood that they are a mass of bustling confusion to their patients. What seems like a well ordered and smoothly operating process to them — doing rounds — can be a chaotic and disconcerting experience for patients.

I’d forgotten about this entirely.

#3 Question Log
Unlike the other sheets, this one is an ongoing list of questions and concerns. As these are answered, they get crossed off the list. New items get added to the bottom as you carry on. Once a day, the patient is asked to review their Events and Visitors, and to note any questions or concerns they have. Some standard seed questions should help a lot, such as:
- What does ‘normal’ healing look like for someone like me? 
- What can I do to lessen the pain, and to make the pain worse?
- What happens next?
- What should I expect to happen after [procedure]?
This log ties the other two together — as long as it is done by the patient before the doctors do their rounds (which should be noted on the top of the log), so answers can be given.

I kept a question log going, but once I got in the habit of writing out my concerns each morning I got pretty good at keeping track of what I needed to ask about.

Taken together, we have three clipboards with three pre-printed templates. These can have a lot of detail or a little depending on the patient (and their family) and the nature of the problems they face. Each clipboard has a benefit on it’s own, but the three together have emergent benefits that are greater than the sum of the parts. The sheets should be in the sole care of the patient, by the way, and not filed by the facility. We’re not making more paperwork for the already bureaucratically overwhelmed staff: we’re giving a little paperwork to the patients to give them a much better sense of control and continuity.

There was some very engaging discussion in the comments. Sherry and Sen provided a lot of insight at the time… I’ll have to ask Sherry if they tried these ideas out.

Sen-Foong Lim Sherry should really see this: I’m non-clinical now, but I think it’d be a great thing to implement. All people should be active in directing their own care to whatever extent they feel comfortable. Tools like you’re suggesting would be helpful to anyone who has lost use of their voice or even people who just needed a guide of what to ask who to ask.
Julian Sammy I like the clipboards because you can hand them around, and I could be writing an event while you are signing in (for example). Binders work too, of course. Three-hole punched paper is likely a good idea, regardless, so the patient can take and file their papers.
Sen-Foong Lim Yup; keep records. Very helpful to know who said what — especially when you’re hopped up on goofballs
Julian Sammy Goofballs are my favorite hopping up. :) Sen-Foong Lim, how would you feel about a chat with Sherry Darling and Jay Cormier about making this work as a self-reinforcing behaviour set? At this point I am motivated to fill in my sheets because of the great reactions I get to having information that is so useful across shift changes and across days. If this were standard ‘just another form to fill in’ it wouldn’t do much. If doctors just expect to see your question log every morning though… there’s a powerful motivating factor.
Sen-Foong Lim If it’s all the patient or family doing the work, the docs and nurses shouldn’t have any issues
Julian Sammy The patients would be doing _most_ of the work. The sign in sheet is for the practitioners, but should be a minimal overhead, like checking the wristband to make sure you have the right patient. The big ‘effort’ from the staff is to have them expect a Question Log and an Event List to be there, and to then give a little help getting the patient started on those lists.
One more benefit — when Doctor Q asks me if I’ve seen Sloomba Calvorina of the Nebulon Cluster about the Praxistalion Convention, I can say, “Here’s my list who is that?”
Sherry Darling Julian, these are all great ideas and sounds like you have put some of them into practice. Things are a little different the unit where I work (stroke) b/c many of the pt’s can’t write, but these could certainly be used by family, as you said.
The event notes — we chart on our pt’s but how valuable to have pt’s do their own charting. There are pt journal apps out there, but your idea makes it accessible to all.
The sign in sheets is intriguing. We have white boards posted in all rooms where the pt’s schedule for the day is posted. Tests, visits from allied health, etc. At the beginning of the day we write down what time we expect to see a pt and then we check if off on the board when we’ve come and gone. The trouble has been getting the docs to participate. Your idea of signing in doesn’t necessarily allow you to know ahead of time, but it does allow you to keep people straight. Sounds like the docs caring for you come at the same time everyday so timing is predictable. It also sound like it requires your vigilance about getting docs to sign in. They might say its a good idea, but the trick is (and has always been) finding a way to get that to happen in practice.
The question sheet is the same as our ‘scut sheet’ — things we need to ask the docs to do or ?s to answer. Pt’s need scut lists too.
I love the idea about putting them all together. One clip board. Take names, read events, look at questions. That might make it more reliably looked at.
Gonna talk about trying some of this on our unit, and share with colleagues in the ICU and on head an neck surgery at TGH.
Julian Sammy Cool beans. There are some specifics of the idea that are important, I think — we can talk about why I think so (and come up with something better), but for now here’s the list.
1. Separate clipboards of standard-but-different colours — say green (Sign In), brown (events), and white (questions).
2. Not whiteboards — clipboards.
3. No copies taken by the hospital — make it a policy. Comparisons can be made, but no copies of my clipboards in your records.
4. Everyone signs in, like everyone else. Chaplain, volunteer, nurse, whomever. 2nd visit just add a new time to your line (so make each row big enough for multiple times and some patient notes)
Before piloting set out to compare some quality measures. Medication errors, comfort btwn patient and staff, time in hospital, and other measures *you already use* should be the basis for this. Don’t add new measures ’cause that’s new paperwork, and no one needs that. :)
Make the first trial just one week and in one dorm room (for example). Many barriers will appear in the first week. Address these and then do a second one week in one room. Repeat 3 or 4 times, getting feedback from participants each time.
When people start forgetting or resisting look for a reason that is deeper than ‘it’s new’ or ‘I don’t like it.’ Adoption stops when people feel like they are losing something. What?
And there’s your Business Analysis / Design Thinking education in 10 minutes.

10:14PM — All My Feels

There are a lot of tears on my face today. Why? A few reasons.
Sitting in a clammy hospital chair, gowns strewn while my love tries to dig my lung out with her thumbs. It is wonderful. We have not even cuddled since the last week of July; I am only now beginning to be comfortable lying back, let alone on my side. I want to hold her in my arms and fall asleep on a warm afternoon wikiwalk.
Organizing my room into a Livé-friendly space, with colouring and flowers and a crawly bed and a towel around my neck to keep the worst of it contained and then they are here are she is fine and I love my little girl. We have fun, but she knows this is serious. She wants to make it better, and can’t understand that she has already.
Lying in my hospital bed, considering the future… until Monday, every roll of the dice came up “worst case scenario” for us. One “not worst case” — or even one “best case” — doesn’t mean it will all be better, or that the next umpteen rolls will be in our favour.
Walking to the coffeeshop with Mom, feeling the comforting weight of so many years of care and love.
Watching my sister taking careful notes, asking important questions, being protective without smothering; then explaining to Holly and Anita and Kathleen and Mom and Hugo what she has learned.
Chris and Donald coming to visit, to call Henry, to be family. Christine breaking into our house to deliver delicious, sustaining food. Fran sending notes every day, desperate to help, but so far away. Perry and Joe sending flowers from afar. Grampa Bill calling to say he had cancer half a lifetime ago, when he was 45.
Having friends, old and new, offer their help and support and love and care.
I’m tired now, and ready for bed, but I don’t really want to sleep. I want to be with you right now, giving you a big hug and doing something fun, or important, or both.

2016.08.21 Sunday

This morning started quietly. My shoulders and neck are physically sore and tired from carrying around a big pile of stuff yesterday, and my legs are tired from peddling around, but not terribly exhausted.

In the early afternoon I went Pokémon GOing, riding my bike up to a local gym. I was able to take it down with my new Vaporeon, which felt very good. Then I rode down to the Waterworks to take out the red gym there, and maybe claim TWO placed critters for the first time.

Nope. I could not get that poly-something to die. Ugh.

I rode home, and finished making arrangements for a somewhat impromptu dinner date with my cousin Michelle. Her husband and son were coming into the city for a concert, and we figured we could meet somewhere for dinner. I found a Thai place called PAI at Adelaide and Duncan, and after a bit of a wait we had a really really really good meal. The menu had a nice little chart indicating what level of pepper you could expect, ranging from none, through “foreigner hot” to “Thai hot.” In Trini terms the last two would be “slight” and “pepper.” Michelle and I had two different curries — both superb — and both Thai hot. Very worth the wait IMO.

It’s been a long time since I really had a chance to chat with Michelle. It was a real pleasure to just chat about whatever.

After dinner we took a slightly scenic route back to Union Station, so I could show here where some landmarks are. In short order I was channelling my father.

“In most of the city everything slopes down to the lake, so if you can see a long uphill you’re almost certainly facing North.”

“New city hall was controversial when it was built because it was too feminine a building.”

“The Hudson Bay Company was founded in 1641.” (Note — I read that on the plaque, and did not have it in memory.)

…and so on.

We met up with Kevin and Josh at Union, which is very different than I remember it. After getting turned around a bit we found our way to the new GO platforms, and got them together for their ride home.

And now it’s 1AM the next day, so I’m going to bed.

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