Meditations on "first, do no harm"

I've been wondering lately if it makes me either a bad person or a terrible almost-pharmacist (or both) if I think death would be the most humane outcome for a patient. 

I would like to take a moment to frame this musing with a patient vignette. His is a totally made-up story but it reminds me of a number of patients I have cared for already. The patient is in his 30s, has a traumatic car wreck but walks away unscathed... until a few days later when massive internal bleeding is discovered in the ER when he turns up dizzy and then stops breathing. But despite what becomes a sudden cardiac arrest, he lives. Kind of. He can't swallow or breathe alone or respond to the world, has constant seizures that require him to be restrained, and shows zero improvement after a month in the hospital. Or maybe she's in her late 70s, has a big blood clot in her lungs and loses consciousness a few minutes before her daughter finds her. The clot was caused by cancer. She has been in a coma for 3 weeks and the family wants aggressive chemo. Or maybe he is in his late 60s, just had a third heart attack, and is now taking 15 medications a day to combat heart failure but is not improving and his decline is only marginally being slowed by all the medications and the frequent short trips to the hospital.

I should also add that my routine is to pray and/or think good thoughts about every patient I come across every day with every prescription I fill and every one I hand out. It helps me keep it in perspective, that everything I do counts and is for someone with a family and friends who matters. This gives me a lot of opportunities to think about what would be the best outcome (I hope this patient gets better or gets to go home or isn't in pain any more or gets a good diagnosis soon or... dies soon so the suffering ends?).

When we enter a healthcare profession, there's a code of honor or ethics or whatever it's called in that profession. Here's a copy of the Pharmacists' Oath. http://www.pharmacist.com/oath-pharmacist I often think about the Hippocratic Oath too, the Declaration of Geneva being the modern version that I find keeps the spirit of the original well. http://www.wma.net/en/30publications/10policies/g1/ Of course I also consider the idea that in the health professions, we might want to  or ought to "first do no harm."

I worry that too often we get busy doing everything we can to extend life and we forget to consider what kind of life it is we are extending. If it's a life that requires multiple machines to permanently sustain and there's no ability to interact with the world, I'm not sure it is one I want for anyone. In some ways I'm disappointed that any ethics committee anywhere lets families lobby for this. In other ways, I get it. It's hard to think about death and harder still to accept that the time for letting death happen has come for someone you love. But I keep asking myself if we are harming patients and their families by preventing death at such great lengths with such extraordinary measures. (You will note that I don't mention about if we should offer assisted suicide to terminal patients, and I think that's a separate issue and maybe I'll write about that eventually but not now.)

This year for the Festive Winter Holiday, I'm asking my extended family for copies of their advanced directives and living wills. I don't want to find myself sitting in a hospital room with an almost-dying loved one who had a stroke and not know if they want the full court press to live the maximum number of days even with some or severe cognitive impairment or if they'd rather have no intervention and jut be allowed to die. I don't have lots of siblings or siblings-in-laws to consult about parents and grandparents or each other if we have really bad luck. I spent many hours considering my choices about what I want and what I'd want for my girls if I were unable to make decisions for them and they were still under 18. Now that I have seen more patients with end of life stalling interventions, I am updating a few things but for the most part, I'm feeling secure in my choices. I want no treatments that extend my life unless they extend my capacity to be me as well. I want only palliative care if I have stage 4 cancer or a cancer with a low increased survival with treatment. If there is no chance of recovering nearly all of my mental faculties, I want no feeding tube or ventilator.

But above all, I hope that we all talk more about the choices we can make at the end of life and that we do so well in advance of needing to make them so it's simpler and family and friends don't have to feel guilty if they don't demand full code (all the resuscitation possible) for a patient who is unconscious, on dialysis, a ventilator, and has a feeding tube permanently placed.

If you are curious about how to write a legal document for your state, here is a link to a wealth of resources that can help you and your loved ones puzzle through it all. If there's one thing I've learned from working in hospital and clinic pharmacies, it's that it is never too soon to consider what you want the end of your life to look like because it might come remarkably soon. http://www.nhdd.org/public-resources

Firsts, lasts, and middles

Last Sunday as we left a building to go retrieve the kid and spouse from a nearby playground via the parking lot, I asked Little Monster to hold my hand. Just like that, she did. She held on tight and walked beside me across the parking lot and down the path to the playground.

I got a first out of her. Most of her firsts have been shared between us parents or ignored while I was busy or happened at daycare but this time, just me. I bet if I asked around she's done this before but it was a little triumph anyway. First time walking In the parking lot holding my hand.

This evening I was tampering with something on the computer and I heard someone say "hi mommy" just out of sight over my shoulder. I turned and started to say "hi there Kid" but saw Little Monster instead. Sneaky baby, growing into a toddler. She owns a tiny plastic potty now and she can drink from a real cup and eat ice cream with a spoon and little mess.

It's easy to see now that there are so many lasts piling up too. Last time she calls a fox KITTY! Last time she screams about a bath (now she demands them often and splashes with glee). As cute as it is that she has mixed up "on," "off," "down," and "up," I'm not sure I will miss her shouting OFF! while struggling to zip her sweatshirt or put on socks. The hands outstretched to reach for me while shouting "down, Mommy?" will certainly be missed though.

It's interesting because I don't see any leaps in the kid's development lately. She's plowing along toward reading and adds a couple of words a week but no leap yet. Practicing her violin was too boring and yet too hard and there was never a proper time for it so we've given up for a bit. I keep hoping today is the last time she does one of her infuriating things (you know the things that make you nuts about your 3 year old? All that stuff only she's taller, stronger, and has more words to argue) but I'm sure it won't be so I'd be content to stretch the interval between moments.

I'm in the middle of rotations and it's scary how fast it's all going by. From this end I might buy the "oh, pharmacy school went so fast!" story I've heard from many pharmacists. Maybe. I suppose it's like parenting a preschooler. The hours take forever but the months fly by. I'm trying to gather all the lists of things I need to do and lists I need to make so I can try to keep it together. It isn't working so I'm going back to keeping my head above water. This next rotation is absolutely out of town so that's exciting and terrifying and all levels of panic to elation.

Hidden work or why I can be abnormally stressed

Let's talk about hidden work. When you are in the realms of parenting especially but really any long-term relationship where you are both working toward a common goal, there is the risk of doing hidden work. There isn't any complex definition to hidden work as it's defined in the social science literature beyond "work that goes unrecognized by those who aren't doing it." Usually in parenting hidden work describes all the things that (stereotypically) are done by women that men seem totally surprised need doing.

A good example from my life is scheduling well child visits. I keep track of them for the most part by entering them in my digital calendar and inviting my spouse to them. I have been away from home more or less from May until August and didn't attend Little Monster's 15 month appointment back in May so I didn't schedule her 18 month appointment afterward. With the kid I usually took her to well child visits by myself since usually my spouse was working, and with Little Monster we have gone together up until the 15 month appointment during which I was working (my spouse was very underemployed last year and thus had plenty of time to come with). I had never explicitly stated that at the end of every well child visit, I walked over and scheduled the next well child appointment. I just always did that, and for what is still a majority of the well child visits our girls have attended, I did it with nobody else knowing it's what I always did. It was hidden work from the other person in the relationship who needed to be working on the same parenting project as me. As you might imagine, I mentioned when Little Monster was 17 months old that I was curious about when her 18 month appointment was since I'd be in town then and might be able to attend it if it were in the afternoon... and there was no appointment yet. It meant that she just had that visit this week when she is now 18.75 months old. Is that the end of the world? No. But it's representative of the sort of trouble a lot of couples run into.

For us specifically, playing Chore Wars is a way for us to explore ALL the work and to make it all explicit. We don't have much hidden work but it's important that we keep working at it so we are both aware of the silent contributions the other person is making to keep things going smoothly. The other night, the baby woke up and I slept through it (nights aren't my thing because I get up much earlier than my spouse so I wouldn't have gotten up even if I had known she was up). Without a way to communicate that happened, I would never have known that Little Monster held a baby party from 1am to 1:40am in the living room. We have a weekly family meeting now where we all share something that's going well, something that could go better, and something we personally are going to improve. This week we've split it so I should be emptying the dishwasher and my spouse should be loading it. I actually think we need a white board where we write what everyone is doing to improve this week so we don't lose sight of it.

I have heard from a variety of folks that my spouse and I have such a good relationship. From my seat inside it, I'd say it's pretty typical and nothing especially great. We struggle just like everyone else but in different ways, some of which won't be appearing on this blog, most of which are about our non-traditional division of labor and how weird that is for everyone else. What is different about our relationship compared to those around us is that we have very little hidden work so nobody feels like they get no recognition for the great things they do. When you earn points for doing the dishes, it adds a little oomph to get it done AND your spouse knows you did it, even if there is no evidence. Say I empty the dishwasher and then reload it and then run it again before my spouse gets home from an evening meeting or my spouse does the same while I'm at work one day. Without Chore Wars, it's easy for my spouse to completely miss that I did anything because the dishwasher went from full of clean dishes to... still full of clean dishes! Obviously this means we need to be diligent and add all the parts of the various tasks we work at around the house to Chore Wars so we can record what we do. The reporting aspect keeps us accountable to each other as well.

It's my natural instinct to take on more hidden work than my spouse. I like to organize things and plan and have my living space tidy while my spouse values this much less and would rather relax. I have a hard time relaxing when it's a mess. This means that I have to be diligent about not hoarding that sort of job, that I have to let my spouse do some of it and trust that it will be done adequately even if it gets done totally differently than I had envisioned. We had our office full of boxes, with one wall floor to ceiling boxes from when we moved 2 years ago that was blocking a closet full of MORE boxes. I'd always meant to put shelves into the closet once the boxes were gone or to hold the things that were in the boxes, but my spouse decided to hang some sweater organizers and pile in some totes of stuff, and that's fine. It doesn't matter how that work of organizing the closet happened, just that it happened. PLUS the boxes are out of the office. It's a lovely space now that there's room to move without dodging the boxes. The danger of me taking on all of the work is twofold: if I don't get something done, nobody knows and so whatever it is can get to a critical level of neglect since nobody else is checking in, and I can make sure I never sleep while I get the house organized totally and spotlessly clean. Neither of those is good so it's important that I give up tasks. I explain all the steps I have been taking completely and don't assume my spouse will know one thing about how the job is done (there is much eye rolling usually but sometimes there's a moment of surprise where something I have been doing is explained and my spouse can then more fully do the job), then trust it will be done.

Trust is tricky and building it is still a work in progress (I ask if my spouse can do something, the response is affirmative, the thing is still not done after what I deem to be far too long, I point this out, it either gets done by me or my spouse... or we repeat). I still feel, despite getting let down often, that it's worth it to give up control of some things. We have a much happier relationship if I sleep and if we both pitch in to keep things running smoothly.

Winning and losing all at once

Let's talk Chore Wars! I adore this game.

Here's the very brief version of its rules. Everyone in your "party" creates a character by choosing their skills and a picture. Your party could be your immediate family, your office mates, your neighborhood, or a random bunch of people you meet online. Then the party leaders create Adventures. Every job is an adventure. The adventures are worth experience and earn gold, plus each has attributes that increase your skills (so the stats are strength, constitution, dexterity, charisma, intelligence, and wisdom... every job is high, medium, low or n/a for each stat and doing the job increases your character's stat in that area over time when you gain enough experience). For example, I just created a job for scrubbing a toilet. It's worth 5-10 xp (experience) and requires medium constitution (strength is for physical exertion jobs, constitution for physical jobs that take a long time, dexterity for lighter chores that require precision manual work, charisma for interacting with people outside of the party, intelligence is knowing something specific, wisdom is inventively applying knowledge). When completed it's worth 6-8 gold and there is no chance of a treasure or a wandering monster for this job because I was too lazy to think of something not creepy/gross. Watering the plants in the garden has a chance of finding a treasure like a Leaf of Awesome Proportions or being attacked by a wandering monster Weed of Doom in addition to xp and skill growth.

Then once you earn stuff in the game, you can develop a system to redeem that stuff for real world rewards. We are collecting exercise tokens and can redeem 15 earned in a month for $10 in fun spending money. Soon we're going to set out how game Gold translates into allowance for the kid too.

We started to assign all the work in our house points once before based on how long it took to do the job multiplied by a "everyone hates this" factor (so cleaning the cat box takes 5 minutes a day or 35 minutes a week but we hate it so it's worth 70 minutes' worth of work a week because it's awful, while cooking supper takes 30 minutes a day or 210 minutes a week but we both like it, so it's worth only 105 minutes' worth of work). Then we gave up because it was hard to track and assign and nobody was encouraged to do the really awful stuff despite it meaning less overall work since it included a theoretical rest time.

Why making it a game works: leveling up a character in a game is fun. Haven't tried it? I highly suggest it. It's a very satisfying experience to know you accomplished something. If I spend all day making sure a patient's medications are perfect and appropriate, at the end of the day something changes in the patient's health and all those changes are for nothing. That's frustrating. I love coming home and going on a little ridiculous video game or card game adventure where I know exactly how to succeed and when I have succeeded and all the steps to follow. In a video game I also tend to get visual cues to tell me I'm succeeding like a progress bar that shows me I'm getting close to my next level (in a board game you see your little car advance around the board toward victory).

It's also fun because chores become a competition. I'm totally winning right now in our family Chore Wars game because I am more competitive. I taunt my spouse that I'm going to win, that I'm going to get to some chore first so I get all the points, all in good fun and with a laugh... and yet I am totally winning. I am rarely winning in game stats though. My spouse started playing in June and I didn't join up until July so I have been playing catch-up in overall experience but recently I pulled ahead! When the kid does something that will earn her Chore Wars points, she dances around us until we enter the points in the computer. She isn't reading yet but she inspects her character's numbers after every job she completes (hers are picking up things and doing homework but I think we will add more this week since she has been so excited about it) because she is SO into it.

But even if my character isn't winning by gaining the most experience points or the most gold in a month or a week, I win anyway because THE JOBS GET DONE. The dishes are done more often, the laundry gets put away more often (this is worth double the points of washing and drying because it so seldom happened before). Whether my character wins or loses, I WIN!

As time goes by, we will add silly conditions to the chores to make it harder to complete the adventures like that something must be done with nobody catching you in the act or on a Thursday (like taking out the trash from all around the house must happen on only a certain day or is worth double experience on a particular day). Goofy conditions keep it fun and challenging to stay ahead in the points.

In the next post, I'm going to touch on "hidden work" and why we count everything (or are trying to) in Chore Wars so it continues to feel equitable.

Fixing reality part 2

Let's talk some more about Game Theory, shall we? This is more of the discussion of the really excellent book Reality is Broken that I started talking about in Part 1.

Game theory! I've studied it mostly in the context of math and education and sociology, but there's obviously the other part that's about designing games people like to play and find valuable. In math, game theory is about the set of equations that can predict outcomes of different games. This gets adopted in education and sociology to be used in discussions of why people play games, how we are fooled into thinking we are more likely to win games of chance than we are (hint: you will never win the lottery or in the casino), and how to best use our human nature to our advantage (ie how to win the Prisoner's Dilemma and what "winning" means, extending into the realms of positive psychology where we try to sneakily make people engage in behavior that makes them happier).

The pieces of Game Theory that I think are most important to consider are: that we have been playing games for probably as long as we have been people and that our societal involvement in playing games as opposed to doing other things follows societal change, that we play games because they fulfill a need we have in our lives and when that need goes away the games likewise disappear, and that the New Games movement of the mid-20th century probably changed those of us who have grown up since then substantially from generations before us.

Playing games: the tidbit I really liked from this book is that in the past, playing games increases as our perceived ability to change our life circumstances and have perceived meaningful input into our own working lives decreases. In other words, when we feel like we have no ability to change our working lives, we play more games because it's a realm in which we have a lot of perceived control. When you consider the stereotypical video gamer, this holds up and that stereotypical guy (isn't it always a guy?) is someone smart who is working in a dead-end job that is really boring. I think it was the 18th century in England (but sorry, no paper copy to double-check this) where card games became wildly popular and at the same time, people were very dissatisfied with their work lives.

Defining games: remember, Game Theory is bigger than just video games, although the author of this book is a game designer who has almost exclusively designed video games (perhaps exclusively even). Games range from the prototypical World of Warcraft or Halo to Farmville  and Words With Friends in the online realm to chess and cribbage or Cards Against Humanity and tic-tac-toe in the purely physical realm.

The New Games movement toward collaborative playful games started in the 1970s and is very widely spread now, which is neat. I just bet you have at some point played a parachute game with a beach ball or one of those "everyone in a circle" sort of games where people take turns. I think the important thing to know is that the idea was that games are an innate part of being human and that we can use the fun of games to help us develop skills and work together better. There's research to back up that theory but I haven't read it in quite a number of years. I do suspect it would be fun to read.

Why Game Theory anyway? This is sort of the convergence of positive psychology that studies what makes people happy (like the opposite of what psychology spent most of the 20th century looking at, the things that make people unhappy and/or mentally unstable) and its practical application: getting people to do things that are beneficial for them or that we want them to do for some reason. The premise of Reality is Broken in particular is that since people as a whole are choosing games as a way to spend free time, we should design games that inspire people to do useful work instead of just leveling up our online avatars or winning at 2048 or whatever. In the US alone there are 183 million people who play an online game for 13 hours a week or more. That's nearly 2.4 billion hours a week that is spent outside of physical reality playing games. If we could harness that time to engage people in something fun but also productive in the real world, wouldn't that be amazing?

Speaking as a new Chore Wars player, I am at least three times more likely to do a job now than I was before. I get excited about increasing my lead in points for the month. We set up a system so if we exercise enough times in a month, we can turn in our Exercise Tokens for our fun spending money. $20 a month doesn't seem like much but since I also get to win (sorry family, I am way too competitive to not win...) and have to keep up my lead by continuing to work on things so there's no resting on my laurels either. Here is a game that I play online and that improves my physical reality at the same time.

Sadly, blog posts don't earn me any points toward my next level so I am off to go empty the dishwasher, walk the dogs (even though they aren't mine, I get points just like if I were cleaning the cat box), and then take a walk.

Fixing reality part 1

I'm listening to a variety of audio books on my commute and my very favorite is Reality is Broken: How Games Make Us Better and How They Can Change The World. The only reason I'm not listening to it right this minute is that I get all excited and inspired listening to it and then I can't sleep (one of the reasons for the audio book indecision, the other being that sometimes a book gets too sad and I just can't listen anymore for a time).

So far, I have learned a whole variety of things about how game theory and game design can be applied to making the real world better and I am super excited to get a physical copy so I can read the bibliography of this and read even more on the subject. BUT today I want to share a little bit about why games are so awesome. This is my very short interpretation of her book and you should just go listen to Jane McGonigal's TED talk and read the book yourself because it's totally worth it.

First is that while we know a bunch of things that make us happier, they seem hokey and we avoid doing them because they make us feel sheepish and silly when we do them alone. BUT when we do them in a group we are willing to be silly and then we are happier as a result! So it is important to get together and be silly by dancing or complementing strangers or whatever. If we need a game to do that, so be it.

Second is the really cool game that helps your household/office/etc group get all the chores done in a fun way. It's called Chore Wars and team leaders set up adventures for team members to complete with experience points and prizes (digital ones) just like in those silly MMORPGs so you get to level up! If you have never leveled a character up, you are missing out. There's a bunch of stuff in this book describing in detail why it is so satisfying to play a video game and have your character earn a new level, but if you haven't ever tried it, you totally should just to see the high the gamers of the world are enjoying. We just started playing but I am competitive enough that I'm doing extra work around here to rack up some points. I even exercised an extra 15 minutes to earn more experience points.

I'm looking forward to going on at great length about this book and how much I adore it but that's coming in part 2. For now I am sure I have homework to finish for next week that I could be working on (organizational skills! I am also practicing those!). Be excellent to each other and know that I'm peeking in to read blogs periodically but mostly am swamped with life and this "in the moment" project of mine.

Side effects

One of the interesting things about being on rotation is the strange things that are happening that are unrelated to my current actual day to day working experiences. In other words, rotations are supposed to teach me pharmacy things and other things I learn or skills I develop are mere side effects.

Since I am clearly procrastinating, here's a short list of my side effect lessons.

1. I do not especially like having a dog. I'm staying in a place with 2 big dumb dogs who are very sweet but also a nuisance. Compared to Fluffinella (our superior resident feline who is probably napping on a pedestal at home right now), these dogs are far too much trouble. One gets so excited to go outside that zie jumps 5 or 6 feet straight into the air. It is ridiculous.

2. Birds are weird. I dodge the chickens leaving my parking space in the very large driveway, then the ducks paddling in the ditch near the road before I leave the driveway, then the pheasant who likes to dart across to the other swamp at the first corner, and THEN there's a family of wild turkies a block away. The tom turkey likes to strut ever so slowly across the road while the hen and chicks just hover in the bushes JUST TO MAKE ME NERVOUS. I also commute passed a pond with 2 pairs of geese nesting in it that take their combined chicks for a stroll along the shoulder of the road every morning JUST as I drive by. Fools are just begging to be smashed and yet they appear to have at least 4 communal chicks. I'm unclear if they are actually aware of which chicks belong to which parents as they even have adjoining nests that I noticed on a walk last week.

3. I still don't like driving in city traffic. It is infuriating to just sit in the car on the road waiting. I don't mind the drive when the traffic moves but gridlock is too much. It is a shame that I can't arrange a carpool or take some kind of transit to this specific rotation.

4. It's very weird being a "grown up." I'm staying with a friend who's in her 50s and there's a resident child of hers who is not that much younger than me, say 5 years or so, yet I'm an "adult" and I feel compelled to do things like empty the dish washer and pretend/avoid knowledge of a variety of things (did I see that when my friend was out of town, there was an extra guest overnight? No, I have no knowledge of that per se because a whole group of folk was here when I went to bed and I saw nothing about any extra cars in the morning, it's a mystery!).

5. I still forget where I put my car all the time. I have learned to accept that I just need to park in the same place every time and not fret about it because I can only remember so many things. When I am in a strange parking ramp, I just take the reminder slip about where I parked with no shame anymore. Getting lost is silly if I can avoid it.

6. It will be important in the future to remember to keep a change of clothes either in the car or in the office in case of coffee-related difficulties that necessitate a change of attire.

7. I am pretty happy with my "right sized" lunches and I may translate that into unit dosing my dinners as well. (Aside: "unit dosing" is something that happens often in a hospital pharmacy, where a large bottle gets purchased and then each dose gets put into its own packaging so it is ready to be given OR where a special single dose package gets purchased.) Once a week or so I make something for lunches and portion it out into 400-600 calorie servings in a variety of jars. I'm finding that now that I'm a few weeks in, I am happy enough and survive the commute home with my stomach rumbling. I keep reminding myself that being hungry isn't a bad thing, just a part of life, and that I should adapt and that I WILL adapt in time. I haven't ventured onto the scale yet but I think I've lost maybe an inch at my waist thus far so that's something.

8. I am really lazy after work and will need to plan my daily exercise to happen BEFORE work if it is going to happen at all.

9. Sleeping remains crucial and I am going to go attempt to do some more of it. I still fail miserably at a sensible bed time but I am doing all right at getting up on time despite not enough sleep.