All things bright and beautiful

This has been a rough week. It has also been an amazing week.

It has been a week that has shown me how the life can be so full of love and within that love come such loss and heartbreak.

In my line of work, I say many times throughout the year, "My patient died." It's part of the weekly, sometimes daily routine of a palliative care physician. To some extent, all of the deaths affect me. Maybe not because I knew the person or their family, or felt sadness or loss from their death, but because in any death I am always reminded of the fragility and splendor in which we exist.

This week, though, I was hardly able to say the words out loud, "my patient died" in speaking about one of them. She was not just a patient. She and her family had come into a place in my heart that only a handful of patients and families have ever been allowed. They inspired me with every interaction I had, and although my medical mind knew the reality of what would eventually happen, I found myself, like them, believing that if anyone was going to have a miraculous healing and beat the odds and live a long, full life, it would be her. We had watched her survive episodes of critical illness that would kill or physically devastate most patients, but weeks after coming through one of these episodes, she was off to DisneyWorld for two weeks with her family, including her young daughter - riding rides, swimming, living life as if there were no illness waiting to overtake. She amazed us.

So when she came back to the hospital days after getting home, critically ill, we all hoped it was another of those episodes. The news wasn't as good this time, though, and when she was able to get to a point where she could get off of life support machines and get home with her family, forces rallied around her to get her home to be with her family. I sat with her before she left the hospital, we held hands, we talked about our hopes, and that even if God's plan for her was not to watch her daughter grow up, that I knew she would still be with her every single day of her life. We both had a few tears. Her family joined our visit, I answered a few logistical questions, and eventually I needed to go - but not after several hugs and a look into my patient's, my friend's eyes, telling her I would think of her every day.

I knew medically that her time at home would likely be short, and my hope was that it would be calm, comfortable, and another chance for her to be a mom, a wife, a daughter if even just for a few days.

From her family, we heard she had just that, for one whole day of being with them at home, before she died in her sleep overnight.

It's one of the rare times, perhaps really the first time I have felt this deeply, "I don't know if I can do this." I don't know how often or how many times in my career I will ever be able to bring someone in this close before it ravages all of my emotional reserve. On the other side of that thought though, is the knowledge that whether or not to let someone in so close is beyond my control, and there are simply going to be people I meet as patients that come to that place in my heart, and as broken as a piece of my heart is left, it also leaves me knowing that this is my place in life, my calling, and is a humbling gift.

This gift was revealed this week in my own life as I spent an evening putting up the Christmas tree with my boys. This is much later in the year that we normally put up the tree, but I wanted it to be something all four of us were able to do together, and I waited. In past years I have waited everyone had gone to bed, or I had a half day off home by myself and I have decorated the tree just so, making sure the styles and sizes and colors of ornaments were evenly distributed. If Henry offered to help I would give him a few ornaments that he could place himself, and if they didn't end up in the right place I would either make him move them or would later relocate them myself. It's a habit I picked up from my mom (sorry mom), and I always remember those red and white checked ornaments that would always end up needing to be moved so we didn't have too many of them too close together. 

This year, Henry showed a new and enthusiastic interest in decorating the tree, and so before we started opening the ornament box, I thought to myself, "just let this happen." And it was so much fun. Henry is old enough now that he remembers acquiring some of our ornaments, he knows he was with me when we picked out some of them at the store, he knows which are his "birthday ornaments" and which are Leo's. He would pull some of them out of the box and marvel at the colors or the details. And he had certain places he wanted them to go, places I would not have chosen aesthetically, but that to him, made sense. Some of the locations were chosen because they made a story or theme together. He put his birthday ornament, and his "H" ornament, and two other of his favorites together near the bottom of the tree. He hung several jingle bells around the bottom like a fringe. He told Leo stories about some of them. We had a fire in the fireplace. The boys drank hot chocolate. For a little while, Tom played the guitar and we made up songs and then Leo started shouting "Jing-Go Bells! Jing-Go Bells!" over and over while he very seriously shook his jingle bells.

And as if that isn't all enough, somewhere in the midst of all this, Henry put his arms around my waist and said, "Thank you, mommy. Thank you for doing this tonight."

I type this now and am both somewhat embarrassed of the overwhelming perfection we had for a couple of hours in our house, and am also wiping tears and snot off my face as I sit here crying. 

It is one of the best nights our family has had. No yelling, no fussing, no bickering. I know that Tom and I, and Henry, will always remember that night. It makes me so happy that Henry has that in his mind now and I hope that if and when he is a father, and while he puts up a tree wit his family, he thinks back to our night when he was six years old. I hope that Leo, though he won't keep details of it, will look at an ornament that I make him take for his own tree, and for some reason feel warm and happy when he looks at it.

And for this night, I have to thank my patient. If it weren't for her allowing me into her life and to be a part of her journey, I don't know that I would have let myself and my family have our evening. I might have forged ahead and put up the tree at midnight one night when I was too wired to sleep, or have fussed at the kids or rushed them along, or been irritated when Tom started playing his guitar. Instead, my heart was more open to my family and to valuing the time together rather than rushing through it. I didn't even try to make it perfect - which has never worked in the past anyway. I just wanted us to be together, to slow down, and to enjoy. Without her, I might have forgotten about the importance of taking life one day at a time, and loving those we have in our lives more than we love all of the other stuff that distracts us from them.

So, when people tell me, "I don't know how you do your job," or when less kind people say that I do this work because I somehow "like" death, this story is my answer. I can do what I do because what I get from it is an embarrassment of riches. And I do not "like" death, instead, I love life. Death is a fact in this life, and finding the ways to help others live to their best in turn reminds me to do this myself.

In the spirit of this season, my wish is for love and peace in the hearts of my family and friends, for moments here and there that bring you awe and remind you of the fullness of your lives. And for all those I am grateful enough to know as my patients, I say, again, "thank you."

Friday Night Soap Box

"There is no reason children with life threatening illnesses should die in pain and suffering."
Amen.
http://www.littlestars.tv/films/short-film-1/value-every-life-2/
Would you believe that even in our own country, with all our medical system has to offer children, most kids with life limiting or life threatening illnesses never receive palliative care? 
Even where palliative care trained doctors, nurses, social workers and educators are available, patients don't have access because health care providers misunderstand and fear "palliative care" and therefore don't access it for their patients.
If you know a child or a family if a child with a serious illness, make sure they get the best of all healthcare, including palliative care.

Until patients and families begin demanding it for themselves and their families, palliative care for babies, children and young adults will remain tragically under accessed and under utilized, and suffering will remain under controlled, under addressed, and tragically rob these patients and their families of quality of life and quality of time. 

Auld Lang Syne

“Beware the Ides of March.”

 – Soothsayer, Julius Caesar, William Shakespeare

 La Morte di Cesare by Vincenzo Camuccini

“Beware the first of July.” – Everyone associated with academic medicine. Ever.

While most of America recognizes January 1 as the star of the new year, for those in the world of academic medicine, where we train medical students, interns, residents and fellows for their careers as physicians, it is truly July 1 that is seen as the entre to the future.

Every physician has experienced July 1 as a trainee and my guess is that every time the date looms ahead on the calendar, it makes many of us pause and reflect on our own July Firsts. At least, I do.

Each year my remembrance of the first day I walked into a hospital and introduced myself as “Doctor” makes me a little more squeamish, a little more amused, a little more frightened, and from my vantage point as a young** attending, I sigh and shake my head at that young physician who had no idea what would be ahead of her.

July 1 of my intern year was a Saturday. While most industries would think that starting a whole new crop of employees in their new roles on a weekend would be ludicrous, in medicine it matters not on what day of the week July 1 lands. It will be the first day in practice. Deal with it.

That Saturday, I walked into the local VA Hospital, my stomach full of butterflies, my long white coat feeling like a costume, my pockets full of pens and notecards and pocket guides, and my inner voice on a constant loop of “What. The. $%*&.” I was doing my first month in the medical ICU of that VA, working with another intern, a brand new second year resident, and a seasoned attending. From the outside you ask, “how bad does it suck to be on the ICU, where you have the sickest of patients, your very FIRST month of internship?” It does suck. It sucks bad because it is terrifying, but apparently it is some kind of screwed up compliment from the program. They say the only put the “best,” the “most capable” in the ICUs in July. Though I have no idea what scoring tool or measuring system they are using to gauge this, so I think it’s probably just what they tell people to calm them down a bit before they are made the sacrificial offering.

Most of that day, frankly, is a blur. It was composed of getting used to an electronic medical record system, not getting lost to or from the bathroom, trying to remember which of the patients in the ICU were mine and which were to be followed by the other intern, translating the dear attending’s accent and medical-ese into something that made sense in my brain, and constantly trying not to freak out. I survived it, though, and so did my patients – at least in my memory they all were still alive the next day.

Being a new intern is like being a new parent.
You are constantly scared and tired and scared.
Look how terrifying that baby is!

And it was the next day that would test my mettle as a newbie physician. For, on July 2 and 3, I was to be on call. For 30 hours (give or take, but let’s go with 30 for the sake of what the rules limited us to at that time). I came to the hospital around 6am on Sunday morning, carrying a backpack full of food to get me through the next 30 hours (the VA was not in a good neighborhood for take-out and the only food items available were from the vending machine), a few toiletries, some caffeinated beverages, and probably a book I thought I might get a chance to read.

My team made rounds through the morning and early afternoon. My co-intern and I did our notes while our senior resident stayed near us and answered questions about how to place orders, delete notes we started on the wrong patient, find lab results – all of which she had shown us the day before, but had not quite stuck.

Then it happened. The other interns, who were not on call, started paging me and wanting to give me checkout on their patients.  It was time. My call coverage was starting. The other interns flocked to me, armed with their printed off patient lists that seemed to be hundreds of pages long, rattling off the demographics, the diagnoses, the problems to watch out for, the labs to follow, the plans in case of disaster. After hearing “Mr. Jones is a 72 year old guy who came in with COPD and chest pain and is on {fill in antibiotics} and {add in ant-hypertensives} and has labs at 8 o’clock tonight…” and “Mr. Johnson is a 67 year old guy with CHF and shortness of breath who came in for a COPD exacerbation versus CHF and is on {fill in diuretics} and {fill in breathing treatments} and has labs at 7:30 tonight…” and “Mr. James is a 76 year old guy with COPD and CHF who came in with nausea and diarrhea and is …” over and over again (say, 50 times because that’s how many patients you are going to be in charge of tonight), these wonderful vets become a big old medical soup of CHF, COPD, CAP, C diff, AMI, AMS, VRE that has no chance of being able to distinguish one clearly from another.

I suspect I almost cried. Or at least had some “stomach issues.”

For a couple more hours, though, my co-intern and my senior were still close by, since we had a lot to get finished before they could go home. The scariest moment, though, was when that dear, sweet, lovely, patient senior resident picked up her backpack and told me “See you tomorrow. Good luck!”

I felt abandoned. Vulnerable. Inadequate. Like I had been kicked in the stomach and then dropped at sea.

There was, of course, another senior resident on call with me and another intern that night. It was a senior I knew well. And it was his first night on call as a senior resident. His first time in charge of the interns. His first night running the show and making sure the interns didn’t screw up too badly. And he was well qualified to do this, since just 48 hours prior, he had been an intern. But, from June 30 to July 2 he had been given that mystical power that all interns assume will be granted upon them and was now “the senior.”

The night was, as you may have predicted, horrible.  New admissions. Sick guys**. With blood pressures in the 80s. Admitted to the ICU with guardian angels of ICU nurses there to say things like, “Doctor, you want to order another bolus now, don’t you?” and “Doctor, you’re getting ready to start antibiotics, right?” and “Doctor, which pressor are you thinking of starting now. I’ll go get it from the Pyxis…maybe some dopamine?” Here is where I will say it: nurses kept patients alive that night. Sure my name and my seniors name were on the orders and the notes, but the nurses are the ones who had the experience to see when patients were on the brink of disaster. They are the ones who had the sixth sense about patients preparing to crump. And it didn’t take me long to realize that I needed them desperately.

The flip side to this, is that the nurses know we aren’t to be trusted, and they know they need to initiate the fresh interns. If you are a nurse and you deny this, I will take back the last three sentences in that prior paragraph. I’m giving you all huge credit for keeping patients alive the first week in July. However, you guys know that you get a little thrill out of paging at 2am and asking for orders for a bowel regimen for the patient who “hasn’t pooped in 2 days. Can you order a laxative?” And you all are good at sensing that moment when we have finally gotten all orders in, patients relatively stable, and can steal about 30 minutes for a cat nap. Just as the brain goes fuzzy and sleep sets in, “BEEEEEP BEEEEP BEEEEEEP.” The pager goes off. And the patient who is soundly asleep despite not having pooped since Friday is granted an order for some milk of magnesia…that he will take when he wakes up…in five hours. It usually takes interns until about mid-September to realize the ridiculosity**in this, though.

Back to the night of July 2, and morning of July 3. Around 5:45 the sky begins to lighten. Pagers start going crazy as the nurses preparing to hand over their patients to the day crew request new orders or draw your attention to the labs starting to come in. This is when, as a sleep deprived, stressed, and hungry intern (seriously, those 5 granola bars and the PB&J I packed were NOT enough food) I began to get a little snippy despite my best efforts.

Then I had to go through the process of handing back over the patients to the bright eyed, well rested, clean smelling, breakfasted group of interns coming back in for the day. And those interns were probably asking really annoying questions like “what was the K last night?” and “how many doses of Tylenol did he use?” and I probably felt really guilty inside for not knowing those answers, but at the same time, probably thought to myself, “DUDE! I had 50(!!!) patients under my watch last night. I don’t know all this shit! Look it up yourself!” and “Just wait, my friend, you have no idea what you are in for when you have your first call.” But I got the patients back under the care of their primary team intern, and then started to pre-round on my own ICU patients and then rounded with my ICU team.

Up to that point in my life, I never knew what it was like to have been awake for 27 hours. And it isn’t just the physical strain of being awake that long. It’s the emotional and mental strain as well. It’s the kind of strain that causes atypically articulate, quick-witted person to not be able to find the right term and instead fumble around saying, “we got results of that test. The one that tells about the number of cells…in the blood…like the red ones and the white ones and the platelets…” Until the attending looks with confusion and says, “Do you mean a CBC?!?”

“Uh, yes, I meant a CBC…”

Then, a few hours later, after rounds are finished and notes are in and it’s finally time to go home “post call,” that physical, mental, emotional fatigue is what made me collapse into a puddle of tears as I turned on my car. That’s the thing about me. I know I’m exhausted when I start crying. I had called my husband to let him know I was on my way home, and when I heard his voice, I started bawling. All of the fear and anxiety and worry and self-doubt came out right then.

“What the hell have I gotten myself into?”

“How am I qualified to take care of people?”

“When am I going to know what I’m supposed to do if…”

“How am I going to drive all the way home like this?”

It was a mash up of emotion all the way home. When I got home, I was greeted by my sweet dog and my husband, who had some food for me and let me cry some more on the couch. I told him, “this isn’t right. This isn’t how people should be treated.”  I lamented the state of residency training for a few minutes before I crashed for the next 17 hours.

Then I woke up, got dressed, and went back for more.

I was in one of the last residency classes (I did a four year med-peds residency) that still had 30 hour shifts. New rules went into effect the year after I graduated residency, and now the maximum shift for an intern is 16 hours. It is a rule change fraught with controversy and new problems – how do you learn as much when you are so much more limited in your exposure to clinical patient care? What do we do with all those extra hand-offs? In ways I envy their limited shifts, but mostly I don’t. In the moment, it was terrible. I left that first 30 hour shift thinking that it was going to be a brutal four years of training and that it was seriously flawed. Yet in hindsight, I know that those 30 hour shifts over those four years were likely among my most educational. They forced me to begin taking charge of patient care, making decisions on my own, interacting with families and answering questions and, yes, getting beaten down at times. Did I make mistakes along the way? I’m sure I did. Did they cause harm to any patients? I truly don’t know. And I can see that side of the argument for restricting work hours and trying to modify resident training, absolutely.

Through the rose colored glasses of hindsight, it is only that first 30 hour shift that stands out for being torture to me. There were other bad shifts, but not like that one. No other that, simply for their existence, brought me to tears. That young intern in my memory is like a child to me, in fact, I see her much as I see my 13 year old self embarking into high school, or my five year old self embarking into kindergarten – so very much to learn about the world and about herself.

This was taken at my 8th grade graduation. Look, it was the very
early 90s and floral prints were all the rage, so stop mocking.
After all "Everyone's a Star!"

It’s probably that perspective of the young intern me that has kept me in academic medicine, now seeing that there will always be learning to do, always be teaching, always be those fresh young minds to try and help shape into excellent, compassionate people and physicians. It gives me a chance to make resolutions, which I no longer do for January 1. Now I do it on July 1: I will teach better and more, I will be more patient with learners, I will set an example for them, etc.

So, to everyone out there, Happy July. May we all embrace our own past, thank the patients, nurses, and physicians from whom we have learned, and may we continue to grow and learn ourselves.

**”young” is a relative term. I am still in my first 5 years as an attending, but am in my mid-30s as a human. Thanks to the wrinkles and dark circles that come as a perk from this job, though, you might mistake me for someone a few years older.

** patients in the VA, at least in the Midwest in the mid ‘00s, were almost all male. Like, we fought over who would get to take the 1 in 1000 female patient who got admitted because she might be more interesting.

** yes, ridiculosity is not a real word. Neither is "ridiculopathy" which is a nerdy word that nerds like me prefer. I would explain it but it would be way, way too nerdy.

I Worked Damn Hard to Be Called "Doctor"

Whoa. Am I a snob or what?
Here's the deal.
I am finally, after three decades of education, able to practice medicine without being supervised by someone else. I can write all my own orders, sign all my own notes, see all my own patients, submit all my own bills, do all my own rounds independently. I have my own office (well, okay, I share my office with a colleague, but whatever). My name is on the door. I don't have to ingratiate myself to anyone just for a grade. I don't have to pretend to be interested in areas of medicine that totally and utterly bore me.

I'm a doctor.

I have the $200,000 plus in student loans to prove it. And the forehead wrinkles.

I've spent the past 9 years of my life in medical training, and that was after college.

So, when I walk into a room, and I introduce myself as "Doctor Riegel," and, without a blink, someone says, "Oh, hi, Emily," it raises a bristle on my back.
And not just because I think I'm so super cool and that everyone around me should be calling me "Doctor Riegel."
I don't check the "Dr." box on forms that ask for a Title.
I don't get pissy when I'm checking in at a hotel for a conference and they call me "Ms. Riegel."
I don't have "Emily Riegel, MD" atop my personal checks.

In certain settings, though, it's important to me to be recognized as Doctor Riegel.

You see, contrary to what we've been taught as young children, the masses still see a relatively young woman working in a hospital and assume she must be a nurse. Which means they assume she works for a doctor. Which means they assume that what she says may or may not be the final answer or decision. Which means they sit there, waiting, for the doctor to show up and tell them the diagnosis, tell them what medicine to take or what test to have done.

I have had patients tell me, to my face, after I have seen them for an entire week, "It sure would be nice if a doctor would ever come and see me."

&*%$*@#!

Seriously! People!

Imagine this.
I have taken care of a dying man for several days. Adjusted his medications so that he no longer feel excruciating pain, severe shortness of breath, extreme anxiety. I've made countless phone calls about his ongoing care. Spent hours reading his chart, and writing my own notes. And many more hours counseling his family on the dying process and supporting them through their grief.
All the while putting my years of hard work and education toward this man's benefit.
And, when I walk in the room, overhear someone say, "Oh, Emily just walked in."

When I type it that way, it sounds so petty to even blink an eye at such a comment. Perhaps, some would argue, I should take it as a compliment. Take it as if I have established such rapport with them, and gotten to know them so well, that they feel like I'm a part of their family. No longer a *doctor*. Instead, I'm one of them. I'm *Emily*.

Here's my problem: if my first name were David or Jason or Michael, would they be using it?
Because what I have seen is that no matter how young or old, how good or bad, a male physician is, he is always referred to as "Doctor."

What I really care about isn't that I get called by the appropriate moniker. What I care about is being seen as someone just as, if not more, competent as my male counterparts. What I care about is that my work on their behalf be seen as being just as valuable as if it were done by my male counterparts.

What I care about is that my patients and their families believe in me and the care I can provide them.

So, when I am being called by my first name, I start to wonder if they are one of those patients, sitting there everyday thinking "when am I going to see a doctor."
I start to wonder, "Do they realize that I actually know what I'm talking about, or have they stopped listening to me because I'm not the doctor. I'm just a nurse/aide/custodian. Why should they listen to what I have to say about their disease."

And there's no polite way to ask this. Do I say, "You DO realize I'm your doctor, right?" (okay, so I have had to actually ask that at one point). Do I tell them, "I really prefer you to call me Doctor Riegel."

Admittedly, maybe some of this is my fault. I do cringe when people go throwing around the fact that they are Doctor So-and-So to anyone they encounter.  Maybe I do hesitate to clarify my name. When, after introducing myself as Doctor Riegel, someone says, "Now what was your name?" I do frequently say, "Emily Riegel." I get it, that might set a certain precedent.
BUT
I have seen my male colleagues do this same thing, that when they state their name as "John Doe," they still go on to be referred to as "Dr. Doe."

Believe me, I'm not trying to belittle the hard work of nurses or other health care professionals who aren't given the title of "Doctor," but, if you are a patient, can you honestly say that you don't view their roles differently? That you don't have a different kind of expectation?

Harder to take, though, (and, all truths revealed, the impetus for this post) are when male colleagues, who may or may not have more professional experience than me, who may or may not outrank me (Senior faculty>junior faculty [me]>fellows>residents>interns), call me or email me or text me and use my first name, while referring to themselves by their professional title.

Emily,
Can we meet to talk about the patient later today?
Doctor Blowhard

Emily,
Thank you for sending me the information about patient.
Doctor Toocool

Emily, please call Doctor Smartypants at ext 568

If you're going to call me Emily, then go ahead and call yourself Joe. Or whatever your first name might be. It's that simple.

In an age when there are more female medical students than male medical students, when more and more women are physicians, how can we still be facing this kind of gender gap?

Does anyone out there have some wisdom or advice?
Am I just being hyper-sensitive?
Should I grow a pair and start insisting everyone call me Doctor Riegel?

Thoughts?

I have been evicted...

photo credit http://philip.greenspun.com

We recently had a very dear patient at the Hospice House. One of those old men you look at and still see the charm of his boyhood, twinkling eyes and affection right there on the surface.
He had been an artist, but as he became more ill he was no longer able to hold his pens and lost one of his great joys. In his last month, he wrote this poem:

I Have been Evicted

   Evicted from My House

The House of Life

The House I Loved so much

For so long and forever will.

Lately it has been going down

  The Shell is breaking

The Structure is cracking

   showing its Age!

I Have been Evicted

  From My House of Life!

The landlord sent me Notice

Friendly but Unmistakable

   Time has been set.

Bring Your House in Order.

   You have to Leave.

Take your Memory with you

   And take Solace

It has been a lovely comfortable House

   But time is Up.

See you all at the new Place

  "The Heavenly Chit Chat"

-JB 5/29/2011

By the time I met him, his house was quite decrepit and plans to move out were well underway. He was still there, though, that boyish twinkle. And so very kind and sweet and always trying to lighten the mood and elicit a laugh. He found comfort in having someone just sit with him and hold his hand. Often he would bring the guest's hand to his lips for a gentle kiss.
From what I was able to learn about him from his friends and his medical records, he had every reason not to be sweet and kind. He had reasons to be bitter, angry, dysfunctional. Instead of choosing to rail against the world that had done him wrong, though, he chose to find beauty and joy in it. Even in the small details of flowers on his table, or birds and squirrels in his yard.
The room he was in will always be his room in my mind, the room where the final eviction occurred, and he set off to "The Heavenly Chit Chat."

One lucky man!

Have you ever wondered what it would be like to be married to a physician? Or, more specifically, to a palliative care physician? Okay, so probably not.
For a moment just try and imagine what it would be like to live with someone who deals with end of life and/or death just about every single day.
"Depressing" might be what you first imagine.
"Weird goth-type person" is what you also might imagine.
I like to think I am neither of those.
I am actually quite certain I am not goth. Although, I am pale...
But I digress.
In general, I would say that the palliative care providers that I know are a generally happy lot. Most seem to have a special sort of joie de vive (yes, I'm busting some french here, tres chic) that may come from seeing daily how fragile and short life is, and that we must enjoy it every chance we have; or maybe its because of this outlook on life that palliative care was an attractive field. Which was the chicken and which the egg, I don't feel qualified to say.  So, overall, I don't think living with me is very depressing. For the most part.
Until, while sitting on our front porch, enjoying a late afternoon cocktail while our children nap, I say to you, "So, let's say you were in a horrible wreck and I had to make decisions about what kind of treatment to pursue or not pursue. What are your feelings about what you want form life?"

And the light hearted afternoon comes to a screeching halt.

Why do I feel compelled to break out this line of questioning on a lovely Saturday afternoon, on Father's Day weekend nonetheless? Maybe because over this past year I have seen far too many young people with young families, young spouses experience a tragedy. Either a freak accident or a horrific illness or even if something they brought upon themselves - young people not far in age or life circumstances from myself who ended up hanging by a thread, and with that thread rapidly fraying. I have seen how quickly life can go from perfect to nightmarish. Husbands and wives now making decisions with immense consequences. Left scrambling to figure out what their partner would want.
Honestly, before Saturday, I thought I had a good sense of what my husband would want. Of what kind of quality of life he would find acceptable and what kind he would find intolerable. Of what his values are and what he finds to be worth living for.
Thank goodness we had our talk, though.
While I don't feel compelled to share the details or outcome of this conversation, what I will say is that I am so happy that we had the chance to share our feelings and wishes with each other. Not only do I feel like I would be able to do right by him if her were seriously ill or injured, but I feel like I have a whole new understanding of him and, frankly,  new depth of love for him that I didn't know was possible.
So, hard as it may be, and depressing as it may sound to do, if you are in a relationship and haven't had "the talk," I'd encourage you to do so. Yes, it is so sad to even try and imagine my husband incapacitated and me having to speak for him - but, by having this talk with each other I can truly say that we have enhanced our life together.
And, at the end of the day, that's what matters most.

So Long, Farewell.

Leaving work at the end of the day can be a very strange experience when you work with the dying. You never know if you are saying a casual, friendly "goodbye" or THE "goodbye." The one that means forever. It can put a lot of pressure on what is usually a pretty simple part of daily conversation.
Usually, when there is a chance the patient won't still be alive in the morning,  they aren't in a state to really seem to care if I am in their room at the end of the workday, much less what I say to them as I leave it. If the patient is able to tell me goodbye, chances are, I'll see him in the morning.  Then one day a patient told me goodbye, and I was pretty sure there was a good chance that he actually wouldn't  still be my patient the next day.
I had this feeling because, as I left his room, telling him I hoped his night went better than last night (he'd been anxious and had trouble sleeping and became fairly confused as the night went on by the time of my visit, his thinking was quite clear). He glanced toward me, where I was standing by his door, and stated, plainly, "Oh, I think it will be better. I'm probably going to die tonight, so I doubt I'll see you in the morning."
He didn't say it with drama, or as if he were waiting for some kind of "oh, don't be silly, you're going to be fine" response. He said it as if it were fact. Simple, known, fact.
The sky is blue.
I will die tonight.
You will not see me tomorrow.
It caught me off guard, and made me smile toward this sweet, gently man, who had often said things like, "this isn't living, this is existing" and "I never thought it would end this way for me."
He had become so sad by the fact that he couldn't just will himself to die and that it actually was taking his physical body so long to shut down and release him, that I truly hoped he was right. It was as if this were his last remaining wish, to simply die. To die before he could feel himself growing any weaker, any less vital, less mentally sharp.
The perfect ending to this story would be that I walked into work the next day and was told that the patient had died. That he had fallen asleep peacefully, with his wife at his bedside sleeping on the pull out bed in the room, and that, as they held hands, he had calmly and peacefully taken is last breath.
I'd almost convinced myself that this would be the actual ending.
So when I walked into work the next day, and saw that he was still alive, I felt sad. I wanted the perfect ending, the poetic outcome.
Instead, there were six more days and nights that this man existed through (he definitely wouldn't have liked it to be called "living"). He hardly had the energy to speak, and for his final few days was in a state of being unresponsive to his family. His lovely wife, to whom he had been married for over 50 years, was there with him the whole time. The morning before he died, I walked into his room and she was sitting next to him, holding his hand, crying quietly. His time was clearly drawing close, as was their life together.
Finally, later that afternoon, he did die. His wife and son were there with him. It wasn't the perfect ending he'd wanted, but he was comfortable and peaceful and surrounded by love. And I was happy for him to finally get what he'd wanted.