Monday, September 29, 2014

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. 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. 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.

Saturday, September 27, 2014

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.

Thursday, September 4, 2014

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.