Monday, December 13, 2010

Moments We Dread

I'm breaking away from my use of this blog as more strictly professional to bring in something more personal.
My grandma is dying.

That pause was me stopping typing because I couldn't see my keys or the screen.
The tears aren't because I feel sadness about the fact that she will no longer be living in a world marred by her dementia, her rapidly progressing loss of memory of all the people she loves, her inability to care for herself, her existence now as only a shadow of the woman who gave birth to and raised 16 children.
What we cry for is rarely the actual physical death, is it?
More so, I think the fact of loss of personhood, of fading from the world. Whether the fading happens quickly, a sudden and unexpected death, or more slowly, piece by piece as it has for my grandma. The fact is, we fade.
The feeling of helplessness, not being able to stop the inevitable. In my professional world, I have an understanding and acceptance of the dying process. I know it is what we all ultimately face and is the one certainty in life. The helplessness I struggle with today is not being able to be there and doing for her what I have done for strangers. Provide her physical comfort, be a part of a team who escorts her through her last walk of life. I am helpless by not being able to be holding my mother's hand as she watches her own mother slip away. I hold the hands of strangers as they cry. I hold them close to me if they have no one else to hold onto. I try to bring them emotional comfort, or at least the comfort of knowing that all is being done to protect against suffering.
If I knew that my grandma's suffering was minimal, the my family was receiving the right kind of support and care themselves, I might feel a bit better. From 200 miles away, though, I'm afraid that neither can be said to be true. I know there is an effort and attempt, but despite my internal struggle to "not judge," feel myself being disappointed and frustrated and even outraged about some of the care she is receiving - more frustrating because some of this care is being provided by a Hospice group, and I'm finding their interventions frankly medically unsound. From 200 miles away, though, and as one grandchild in a family of 40+ grand and great grand children, in a family with 16 children, each of whom are struggling themselves and floundering along the way - what does the one granddaughter with medical and specialty training for just this kind of patient have to offer?
Or, when what I try to offer is ill-received?
I know the simple answer is this: go there.
I know what I would probably tell someone coming to me with the same questions and concerns: go there.
Travel the 200 miles. Be there.
It makes sense on so many levels, but on so many levels doesn't.
There are the obvious reasons: Work. My own little family needing me here. The fact that my ability to be there wold be so short term, and this a problem whose time frame and longevity is impossible to predict. And the overwhelming feeling that should I go there, I will still be helpless. She will, ultimately, till be made to suffer because I simply will not be able to be there at her bedside or on call until she dies. I will have to leave, and my gut knows that afterward, nothing will have changed.
This defeatist attitude is not typical for me.
I see my family members in various stages of denial. I see them in various stages of grief. I see them in various stages of turning on one another with blame. I see them all claiming that they have my grandma's best interest at heart, and believing they are doing what is best for her - but as we find out with all families in this kind of disarray, there is more beneath the surface. More anguish and hurt than I can expect myself to work through so that everyone can begin to heal and so my grandma is no longer some misplaced pawn.
I can't fix them, either.
Again, defeated.
In the end, one way or another, whether I find an answer to my questions or not, the fact remains.
My grandma is dying.
She is dying and it brings back to mind all of the people I have loved and who have died. The shortness of life. The joy of it all, the pain of it all.
And, selfishly, what I dread most about this is trying to explain it to Henry. My bright little boy. He is old enough and smart enough to realize something is wrong. He knows Grandma Cookie, and I think there is a good chance he will carry memories of her with home throughout his life. So, when she does die, how do I handle it?
You would think someone in my position would have the perfect answer to this question.
Guess what? I do have the perfect answer.
Except, it's a perfect answer for you. Or for a stranger. Or for a room full of people attending a lecture.
The answer is not so perfect when you answer it for yourself.
So, here I am on Monday morning, Facing a week of walking into the lives of strangers bringing them my skills and hoping those skills, in turn, bring them comfort and peace.
I will put on my "Hospice Doctor" name tag and game face and I will fake my way through every encounter, while inside I am calling myself a hypocrite and a faker. I will do unto others as I would have done unto me. Or unto my family. Or unto my grandmother.
And will hope that eventually, it will.

Friday, November 19, 2010

Overflow

Eight weeks ago was certain I would write at least weekly about my experiences with fellowship. I have a long list of reasons I haven't had a chance to get around to it. I have an even longer list, though, of tales to be told and shared. I have been amazed everyday at the gratitude from families for the care we provide their loved ones. Hardly a day goes by when I'm not hugged, and certainly no day has gone by without verbal expressions of thanks and appreciation. To say I am fulfilled by this work is an understatement.
What occurred to me this week was that, underlying the fulfillment, and often barricaded back by the gratitude, is the fact that this is also very challenging and exhausting work. It means carrying the grief of others and seeing their pain, sadness, and frustration and trying to guide them through the underbrush and dim light to the other side of the forest. I make the trip several times a day, know the way to bring them through some of their fear. I find patients on a dark path, knowing what lies ahead of them won't be easy, and I try to say, "You are not the first to go here, and there is a way through. I will keep you from feeling the thorns and fearing the strange noises and rumbling around us. I will do my best to keep you from suffering on this journey." 
The problem is, when you walk that path so many times a day, you can't avoid every thorn yourself. The sense of what is lurking in the darkness can't be avoided. First there are a few tattered bits of cloth caught by a bramble, easy enough to look beyond as you keep leading others through the woods. Then a sleeve gets caught and torn, and as more and more of the outer layers between you and the reality of this dark world become more shredded, eventually you feel a scrape on your skin. At first nothing more than a scratch, but each journey comes closer and closer to drawing blood. Until, eventually, you have wounds as fresh and tender as the wounds on the people you are trying to protect. 
So here I am, after eight weeks of trips through the forest, finding myself tattered and exposed, trickles of blood appearing. Raw. 
The first blood was drawn Sunday night when, after spending the entire weekend working, standing by families and patients, attending to death, I came home, tired, anxious to cuddle my child and have an evening to recuperate. On my way home I got a call that a new patient had arrived, and the family was very upset that there was no longer a doctor in the facility. Having already kept the babysitter almost 2 hours later than she'd planned, the thought of turning around and going back made me want to cry. I was told the staff there would try and handle the situation, explain that, being a Sunday evening, there was not generally a physician in house. I had left orders for the patient's care, spoken with the nurses about the plan, and me being there was, truly, not necessary. Several phone calls and a couple of hours later, I heard that the family was still livid but had calmed down to a low simmer. They had, though, stated that "whichever doctor didn't care enough to stay here or come back and see our mother has no business taking care of her and we want someone else to see her."
Hearing that, my temper boiled. Me, not caring enough? Hadn't I stayed hours longer than expected that day because I wanted to sit with a family whose mother had died? Hadn't I stayed longer that day to make sure the patient with worsening pain was doing better after I made changes to her medications? Hadn't I sacrificed time with my son to make sure people who are relative strangers to me have the best care possible? And after that, be accused, by someone who has never met me, of NOT caring? 
This isn't a career I chose in order to be recognized for my personal sacrifices or be seen as some kind of saint, but eventually, after putting every bit of my heart and mind into what I do I become sensitive to being accused of anything short of that. I tried to work through my anger. Tried to remember this is a grieving family, and grief has many faces. They don't know what they are saying. They misunderstood the information and now had to adjust their view of the situation. Still, I woke up several times overnight and immediately felt my heart begin to race, anger well up. My drive to work that morning was dreadful, knowing I would have to face these people, but maintain my calm and rational demeanor, maintain professionalism.
I didn't have to, though. The patient had died overnight, her family at her bedside. She was not in pain or distress. With some measure of guilt, I thought to myself, "thank God." It meant one less challenge to face that day. 
This week has worn on, under the shadow of that rough start. My son and husband, and then eventually me, were all struck by a stomach bug. I was up nearly an entire night caring for my vomiting toddler while my husband retreated to the bathroom not to escape until the morning. I had to go to work the next morning, and since H looked better and his daddy was still a mess, and there wasn't really another option, I took the poor little guy to preschool. I cried when I left- knowing I had chosen work over my child. 
The night before everyone got sick, I got news that a dear friend had miscarried her twin babies. What can I do for her? Offer her for comfort or peace? Nothing. Yet all day long I comfort strangers. Those close to me, though, I feel worthless to even try and help.
My grandmother is on a nursing home. Her health is failing, I see her heading down a path that I have watched so many of my patients head down. She is 200 miles away, though, and I can't take care of her or make sure her doctors are doing the best for her. I talk to my mom once or twice a day, hear the strain and grief of seeing her own mother slipping away. 
All around me, people I love dearly are caught up in the thorn bushes, crouching away from the sounds in the darkness, searching for a direction on a path. I'm not with them, though. I'm with people I hardly know. People who, while I know they need me and appreciate what I do for them, have never done anything for me. All the while, some of those who have been there for me my entire life and helped me get to this point, are suffering. And I feel powerless to take their hands and show them through the dark path.
So, with my body physically exhausted, my heart emotionally tattered, my spirit powerfully drained, I felt myself collapsing. It started with a tearful display at a meeting Wednesday morning. Continued as I drove home to my sick boys that afternoon. Thursday morning I went back to work, hoping to get in as much as possible before the stomach bug took full hold, but also breaking into tears again when another doctor showed me some kindness and told me I should go home. 
So, I did come home. H and I curled up in my bed for a three hour nap. I slept through the night last night, and woke up to a day that I already had off (the benefit of working through the prior weekend). I've spent the morning relaxing with my still-not-100%-toddler. And now I have given voice to my own grief, revealed some of the emotional cuts and bruises that come along with my job.

Sunday, October 03, 2010

Lesson One: It's Not Up to Me

I decided that as I begin the adventure of fellowship training that I'm going to make an effort to actually chart my progress as a developing palliative care physician. It seems the best way to do this is to start right here, at the beginning. Who I am on day one versus who I am on day 365 and on other days in between.
After just one day, after just the very first day of fellowship, I've had to change my perspective about myself as a physician.
Friday, October 1, 2010. The journey begins. It was a bit harried thanks to a debacle at our house over a certain missing key, and my near inability to leave my house thanks to said missing key. Once I finally made it to work, I knew right away that I felt different. Something about actually being able to introduce myself as a "fellow" rather than a resident brings with it a different kind of responsibility and also a different kind of freedom.
Much of the day was spent alongside one of our fabulous palliative care attendings. We visited with patients and their primary care teams, did what we could to help both.
Toward the end of the day, the oncology attending saw us and got our attention. He was preparing to place a consult to us to help discuss goals of care with one of his patients. He felt he and another oncology attending had been very frank and forward with the patient about her prognosis (which is bad) and the need for her to begin getting final affairs in order and preparing for what is likely inevitable - her death. Neither physician was sure the patient really "got it," or that the information was really sinking in - so this is where we are asked to enter the picture.
As we get more information about the patient, the delicacy of the situation becomes more evident. She is in her late 30s and has advanced cancer, which has spread to multiple sites and organs. Her kidneys are minimally functional and not able to clear the toxins and maintain the required balance of electrolytes in the body. She is not a candidate for further chemotherapy or other "curative" treatments. At this point, giving her IV fluids and hoping her kidneys will clear at least some of the fluid and toxins is the only option. This is a temporizing measure, though, as her body is showing signs of not being able to clear the fluids being given to her, so they are building up in her body - something that eventually leads to a variety of other life-threatening issues. Her labs continue to show problems with toxins and electrolytes. She is nearing, literally, the end of what medicine can do to maintain the delicate balance between life and death.
Add to this the fact that she has two children. One in her late teens, another pre-teen.
Add to this the fact that, for the most part, she "feels just fine."
Even though, medically, everything looks horrible and she could be, truly, within days of her death, she feels no worse at this point than she did weeks ago - so how can she really be that sick?
The attending and I prepared to visit with the patient and her mother and brother. Before going into the room, went over possible approaches to the situation, trying to strategize, or get our heads in the game.
Within minutes of our entering the room and beginning the conversation, it starts to become clear: no amount of our talking is going to convince her that she is, really and truly, very sick, very much dying.
She is not ready to "call it quits or say I'm done."
She feels that there must be something more that can be done, and that she will survive this bump in the road.
While the attending is guiding the discussion, inside myself I feel my heart starting to race. In my mind, I hear myself running through all of the arguments to be made in order to convince her that what she thinks simply defies reality. I'm feeling frustrated that she won't hear what we are trying to say and that she won't listen so that we can help her see that she is close to death and that she needs to prepare for it. She needs to get her affairs in order, have the conversations with her children that she may not have much more time to have, needs to accept that if her heart stops, no amount of our interventions and pounding on her chest and sticking needles and tubes in her is going to make her any better than she is at this moment.
I'm fighting the urge to grab her by the shoulders and say, "listen. to. me."
Why won't she just listen? Why won't she let her guard down? Why won't she (and her family) see reality?
If only she knew how much better the end of her life would and could be if she would just see it my way.
After over and hour of discussion, we leave the room.
We have had no more success than the oncology attendings at convincing her that her time is limited.
There was a victor, though. The patient.
By the end of our conversation, we knew what was important to her in her death. She wants to go out fighting. If it means being coded and ending up in the ICU, then so be it. If it means not being able to leave the hospital and get home to see her cats and her beautiful gardens again, so be it. The important thing to her, as she said, is that however she goes, whatever happens, "that was God's will."
As long as she continues to "feel okay" and feel that "there is hope" and "not have the feeling that this is IT," then, though she didn't say it, but what was clearly inferred, then the institution of medicine is just wrong about what we're telling her. She feels that although her labs looks bad, although the fluids are accumulating and although the cancer is spreading, that our predictions just an't be right.
So she will continue to fight and fight and fight.
So, although my judgement of her is that she continues to "deny, deny, deny," there is nothing more I can do to make her see our side - a side I truly feel is just plain right.
Because for the patient, it isn't about numbers and probabilities and what I think is a good death. It isn't about what her oncologist thinks is a good death.
It's about the fact that she doesn't believe she is dying.
And she is my patient.
She is the one I  to whom I owe a responsibility to provide care and compassion and all the medical information I possess relevant to her life.
She decides.
And while I may personally disagree with her, the truth is that the way she chooses to live her last days simply aren't up to me, are they? She is the one who must face the consequences of her decisions. Not me. So I owe it to her to respect her perspective and support her in this time, do what I can to make sure she is comfortable - physically, emotionally, spiritually.
This means, for me, to learn how to back down from my innate desire to always try and convince people of my point. To always try and get people "on my side."
My challenge will be to learn how to function in a place of respectful disagreement and not let it compromise the quality of care I provide.
So, in just one day I learned a lesson and discovered what may be the biggest challenge for me in this field. Imagine what the next 364 days will bring.

Thursday, September 23, 2010

Where I've Been

Yikes, I've fallen behind a bit here. My plan was to write a "Pivotal Moments" piece at least every week until I worked my way through them - clearly that hasn't happened. I've been up to stuff, though.
First, studying for pediatric boards, which I take on October 18th. If you have a few extra brain cells that day, you can send their power to me as I submit my own brain cells to 8 hours of multiple choice questions.
Second, the hubs and I took a great vacation with our friends the Drs. Pitts. We had a 5 day jaunt to Cancun where everyone got a chance to relax, nap, sleep in, eat and (for the ones among us non-pregnant), indulge in some tasty (so I heard) cocktails.
Third, the past two weeks I have been hanging out in Little Rock, Arkansas. Why? Turns out, the Arkansas Children's Hospital has a wonderful pediatric palliative care team and they were generous enough to let me come and follow them around for a couple of weeks to learn more about the daily functioning of their team. I've learned a great deal these past two weeks and am so excited about adding the pediatric palliative care service at KU. It's already under the amazing leadership of Kathy Davis, PhD, who provides more support and care to our families than seems humanly possible. I hope to be able to add a little bit to that as a medical provider in the coming years. Many thanks to Dr. Carrie Brown, and Jill Sorrows, the team social worker, for letting me tag along with them!
While I can't promise a major upswing in the blogging until after I take boards, I will be trying to get at least one more pivotal moment up before October 18th. They're brewing in this brain and I'm sure one will be ready sometime soon.
Happy autumn!

Tuesday, August 03, 2010

Pivotal Moments: Part 1



Originally uploaded by Em's World

If we're lucky, at some point in life, we will have at least one "A-ha Moment." Some of us are lucky enough to have more than one of these moments - even though we may not realize we've had it until later in life, on reflection of how we ended up just where we are. Hopefully where we all end up is a place that brings us joy and fulfillment. I think that part of getting to these places requires looking for and taking note of the A-ha moments, the pivotal moments when the universe, or your deity, or your subconscious is telling you, "Hey! Look over here, lookey, lookey, here's a clue to your path!"
Not all of the clues are necessarily positive, warm-fuzzy experiences. Some of them hurt, shake us to our core. Some of them anger us, frustrate us, bring us to tears.
I've written about some of my "moments" on this blog over the past 6 years. Some of them, even when I was writing about them, didn't seem to me to be particularly important moments, some of them were just interesting. Looking back on them now, though, I see that some of these actually were key in guiding me.
I know I haven't captured all of them, though, so I'm going to try and embark on a little series for myself to reflect on events that have stuck with me, the ones that play in my head over and over again, the ones that I now know helped get me to this point.
These won't necessarily be in chronological order, or in order of importance. They're just going to be done in whatever order they occur to me, and I feel able to take on.

Part 1.
The spring months of 2007 were strange for so many reasons. I had found out I was (surprise!) pregnant. The weather stayed cold cold cold through mid-May, the trees barren of leaves because of a late spring hard freeze that knocked out any vegetation brave enough to have come out. It was the second half of my intern year. I was becoming exhausted (pregnant + intern = exhaustion). 
In April I rotated through the NICU, lucky enough to have two of the best senior residents as my guides through this treacherous month. The three of us got along great and actually remain solid friends. 
Two experiences that month stand out from the others.
The first was a baby born far too early. She was the second child for her parents, who had a little boy under the age of one already. The mom had become pregnant within weeks of delivering her son, something she and her husband weren't really expecting or prepared for.
She came to hospital in early April having bleeding and abdominal pain. She was admitted for observation of preterm labor, and was a patient on the labor-delivery inpatient service for several days. One evening while she was in the hospital, she went to shower in her hospital room. Before she got in, though, she felt a strong cramp in her abdomen, became dizzy and nauseated. She sat down on the only seat available in the bathroom - the toilet. Moments later, her tiny, premature daughter was born, into the water. 
From what I heard, there were screams of panic from her bathroom that brought a nurse running into her room. The mother was sobbing and screaming and in a state of shock. She had to be pried off the seat, and when she was, the nurse saw the baby. Help arrived, and the baby was scooped up into blankets or towels and run down the hall into the NICU.
She was not well. Being born 17 1/2 weeks early just isn't a good idea. Being born into a hospital commode 17 1/2 weeks early is an even worse idea.
At this age, you will find yourself on the brink of "viability" the fancy word we use to try and guess whether or not you can survive outside the uterus.
Your organs are dramatically underdeveloped. Your lungs barely, if at all, functional. Your skin so thin that every one of your blood vessels is visible to the naked eye, just below the surface of your skin. Those blood vessels are so immature that they often rupture and bleed with minimal trauma. Especially the ones in your brain and your eyes.
You don't know how to suck or swallow.
Your digestive system probably can't handle food entering it anyway, and digestion is one of the most taxing things your body could do.
Your immune system is hardly able to ward off infection from bacteria or viruses.
Long story short - don't be born at 22 1/2 weeks gestation. In fact, try really hard not to be born until at least 37 weeks, 40 if possible.
This little baby girl, though, for reasons no one can ever fully explain or know, was on a path to be born very, very early.
So, she was very, very sick.
Complications began soon. She required intubation and being placed on a ventilator for her breathing. She required lots of IVs for medications and fluids.
The attending on service at the time, who is no longer at our facility, had several very frank, very delicate conversations with the parents of our tiny patient. They knew, even before being told, how grim their daughter's days were, in both the immediate future and also long term. 
They knew there was no chance their daughter would come home with them. 
Her father said, "If God wanted her to come home with us, he wouldn't have had her be born so soon." They felt God was taking her to His home, and they were okay with their baby going there.
After a couple of more days in the NICU, and after the parents were comforted and counseled by members of the nursing staff, the medical staff and others, after they had consulted with their families and one another, and their God, they stated they wanted their daughter taken off life support so she could die peacefully.
Plans and arrangements were made so other family members could come see the baby if they wished. The parents came in the evening, and after the tubes and lines were removed, their daughter was wrapped and they held this tiny little baby, weighing under a pound, barely bigger than her father's hand.
The nurses helped them prepare the memory kit with footprints, handprints, photographs.
Then, eventually, but really after very little time, she seemed to have stopped breathing.
What happened next depends on whose story you believe. The resident who was on that night told us the next morning that she was called by the nurses to come look at the baby after the parent left. The nurses felt that she was breathing, still. The resident looked at the baby, listed with a stethoscope and also thought she heard breathing, a faint heartbeat.
The nurses told her they had seen her arms and legs moving at one point.
The resident called the attending.
He was not pleased.
He was mad that the nurses would "mistake" what they had seen for moving and breathing. He insisted it was part of the death process - firing of neurons now without oxygen.
He was mad that the resident had examined the baby, had listened for signs of breathing or heart beat.
The resident said that he told her, "You're telling me a baby I pronounced dead an hour ago is still alive? Don't you think I know what dead is?"
She said that she and the nurses felt the baby was gasping, that it was not just the small minute changes one can see as the body proceeds through death. She went on, she asked him if it would be okay to give the baby a dose of morphine, for comfort.
This was when all hell apparently broke loose, and the resident was further reamed by the attending, and so were the nurses.
He told her, "What if the parents come back in there and see you examining their baby who is supposed to be dead, or see you giving it medication?" Other harsh criticisms ensued.
No morphine was given. 
Eventually, the nurses and the resident on call felt that the baby had stopped showing any signs that might be consistent with life, and the baby was sent to the morgue.
By the morning, emotions were running high in the NICU.
The seniors and I arrived for our day shift, and found a resident clearly upset, frazzled, angered and saddened by what happened the night before. She felt she was in the right, that she had not mistaken anything she witnessed with the baby. So did the nurses.
The staff, who had not been there, continued to disagree with them. He continued to hold fast that the baby had been pronounced dead, by him, and that nothing anyone told him was going to change his mind about the fact that "when I walked out that door last night, I know that baby was not alive."
Later in the day, this attending called aside the two senior residents and myself for a "meeting to discuss what had happened."
He explained to us that he could understand how people might mistake small flinches that a dead body makes for a sign of life. He told us that there is "no reason to examine a patient after they are pronounced dead. Ever."
And, even more, he went on to tell us that the resident's request the night before to give the baby a dose of morphine was almost reprehensible. First of all, why would you medicate a dead patient? Second of all, he told us that there is no place in neonatal medicine for administration of morphine. He said it was tantamount to murder. Said that if we ever gave a neonate morphine that "lawyers would be all over it," and we would be murderers.
Shock.
I was in shock.
First of all, even though I had limited experience in the neonatal ICU, I knew he was just plain wrong about not giving neonates morphine, or any other medication to prevent or treat pain or distress. 
My limited experience with palliative care at that time told me that no patient, tiny, huge, old, young, should suffer while dying.
And my mother's heart, even though my baby was still inside me, knew that it would be more traumatic to watch my child die gasping for breath, uncomfortable, anxious, struggling, than to think that a dose of medication given to help keep my baby comfortable might shorten her already ending life. If I knew my child was going to die, and was, in fact, dying before my eyes, I would be demanding medication to keep the child from suffering. 
While the attending was worried that a family would sue him because medication was given, I had to bite my tongue, hard, to keep from pointing out that he could just as easily, and likely more successfully be sued, for inflicting pain and suffering on a patient, and the lingering scars that could leave on a family.
This was a moment I knew that pediatric palliative care had a long way to go, and felt myself wanting to start this kind of practice immediately.
I saw the lack of knowledge, and the dangers of lack of knowledge and the dire consequences it might have on a patient and the family.
More, it made me want to specifically go into the realm of perinatal and neonatal palliative care. To provide a service and fill a need that was glaringly void.
Fortunately, I don't think those parents ever had any idea about the drama that ensued after they left their daughter for the last time. For them, their daughter died peacefully in their arms. They said their goodbyes, started to make their peace.
It's the way every family should feel when they have a dying child. 
But it's also the way everyone who has cared for that child should be able to feel. That it was a peaceful death, a calm death. A death without suffering - because that's what we go into this field to do - stop suffering. That night, no one involved felt that they had done their job, had fully prevented suffering, and to this day it motivates me, gets me fired up, and reminds me why I have to do what I'm doing.

Thursday, July 29, 2010

What IS it you do?

Being interested in the field of hospice and palliative medicine for a solid 10 years now, there are times when I forget that not everyone knows what I'm talking about when I mention my career. Granted these aren't ever very long times, because what I've found is that, unfortunately, very few people actually DO have an idea of what this field of medicine offers. Usually the immediate question I'm asked when I tell someone what I do is, "what's that?" My immediate instinct is to say, "only the best and coolest field of medicine ever..." But more often I'm able to offer what has almost become my "elevator speech" giving a brief overview of what it means, and what those of us in the field can do for patients, for families, and sometimes as importantly, for other physicians (and all members of health care teams).
Previously I've posted this in an attempt to offer a bit more info.


In a recent issue of The New Yorker, Dr. Atul Gawande, a surgeon and writer, explored the question, "what IS palliative care?" While some of us might argue that he gives a somewhat narrow definition and explanation, still very much focused on the "hospice" side and less so on the ever-developing and expanding true "palliative care" side, at least he gives something. 
If you are reading this and have a background in medicine, chances are you realize how amazing it is that a surgeon would even take on this kind of question, much less write an informative and self-reflecting article about our field. More amazing, he provides, via an explanation provided to him by a hospice nurse, the following near-perfect succinct explanation for what we do:



The difference between standard medical care and hospice is not the difference between treating and doing nothing... The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
Entire article can be viewed here



The article itself provides stories of several patients and their experiences with palliative medicine and hospice, and also of a patient who did not have these services during her battle with cancer. Dr. Gawande paints a picture for us to look at, situations in which we may find ourselves - both as patients and as doctors - and reflect on where we would likely find ourselves in that tableau. I would encourage you to read the article, and consider it for yourself - where would you find yourself in this story? How would you deal with this situation in your own life, your own practice? Why?


Reflecting on these questions is far from easy, even pushing the border of being a scary and painful. The hard and fast fact, though, is that all of us are going to die. Maybe sooner, maybe later. Maybe quickly, maybe slowly. It might be an event we see forming on the horizon like a summer thunderhead, have time to prepare for, time to take cover, time to gather those things precious to us and keep them safer from the storm. It might, literally, hit you like a Mack truck, you never saw it coming.


Although we don't know how each of us will die, we still have control over aspects of our deaths. More importantly, we have control of the life before the death. Years before, months before, days before, hours before. If you take the time to read Dr. Gawande's article, you'll see examples of the many aspects of control individuals can maintain in regard to their deaths. Think about your own for awhile. Write down your thoughts and potential plans and wishes for how you would like to handle these events.
Medical people, think about how you interact with your patients and their families. Is it different from how you would interact with your own family members? Different from how you would hope to have your physician speak to you, shield you, or expose you?


I've done a bit of my own reflecting and the process continues daily. Every time I see a patient or hear about a patient facing a serious diagnosis,  the question in my mind, "what would I do?" is present. It is a question being asked of my physician self and also my non-physician self. What would I do as the doctor? What would I do as the patient? I hope I never stop asking this question, to either of my selves.




Again, a link to the original article
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=4#ixzz0v5hNOtNg

Friday, July 16, 2010

Flickr

This is a test post from flickr, a fancy photo sharing thing.

Thursday, July 15, 2010

Parental Idiosyncrasies

As I hope any readers of my blog(s) would know by now, I am embarking on my career in hospice and palliative medicine. It is an area I have been interested in for many years, and my particular passion is in the realm of pediatric palliative medicine. No, I'm not crazy.
Given this area of interest, during residency training I tried as much as possible to have exposure to palliative care experiences and to find out more and more about the role of palliative care in pediatrics. During my behavioral and developmental rotation, my academic project and final presentation focused on "Children and Death Concepts." Since kids are not simply "little adults," the way they understand and process the circumstances and events of death and dying - whether it's a pet, a grandparent, a parent, or their own death - depends on the child's age, prior experiences, and what they are simply able to comprehend based on their developmental level.
side note: what I found in my research was that, even though children are supposed to progress through various stages of development and eventually form a "mature" or complete concept and understanding of death, there are many adults I have worked with who are still very much in "immature" phases of their ability to comprehend death and mortality - something I think is an area ripe for discussion on the palliative care world
So, having this knowledge about children and the way they do or do not understand death and dying has recently come into play with something so very unrelated to death and it got me thinking about the effect that my job and my life are going to have on my own child. What are my own parental idiosyncrasies going to do to my kid?
Here's the story.
I have long been very proud of my child's sleeping habits. Maybe a little too proud. I hear other parents tell stories about their 2 year old still waking up in the middle of the night, demanding a drink, a meal, or to climb in bed with mom and dad. Or the kids who refuse to ever sleep anywhere except mom and dad's bed. I admit, I have been judgmental about this and have had little pity for those people when they complain about being tired due to their toddler's inability to adapt to sleep. I have seen it as a parental fault in a way, because I have felt that as a parent it is our job to help teach a kid how to sleep, and that we help them establish lifelong good sleep habits. And who doesn't want good sleep?
Okay, so back to the story. Henry has recently started preschool, which, as a new stress in his life has affected his mood, his eating, and, oh yes, his sleep.
He's been fighting getting into bed. He's been climbing out of his bed, needing us to put him back in several times before he finally passes out. He's been waking overnight, coming into our room, asking to sleep with us.
And, because it's so. much. easier. to let him climb in, snuggle up, and just go back to sleep versus the alternative, which is dealing with him crying and screaming as we order him back to bed.
Another back story: earlier this week, out of nowhere, H told my mom, "If Henry is a bad boy the blue vac will go out with the trash and you can't play with it anymore."
Oh. really? We don't know where he got this idea, but it seems to have the daylights scared out of him...
Therefore at 4am a couple of days ago, when H got out of bed, my husband out him back in - with a warning.
If he didn't stop crying and didn't lay back down and go back to sleep, then the blue vac was going to be put out for the trash guys to come take away.
The child as immediately silent and slept the rest of the night.
Okay, so how do I tie these two seemingly disparate tales together?
Here goes.
Henry is near an age where children develop a "magical thinking" about death. They can believe that it was something they did, they thought, they said that caused the death. They are especially prone to believing that some bad behavior on their part caused the death.
Henry loves all vacuums. If we take away one of these beloved objects because he does something bad, then (this is now becoming my own musing) are we setting him up to believe even more strongly that his bad behavior causes things that are precious to him to be taken away?
If we do this, then if and when there is a death of a person (or, our beloved dog), is he more prone to believe that HE did something to cause the death.
Are we setting up a belief system, a paradigm, for him to be burdened with the wight and guilt of that?
How cruel are we?
What kind of parent would do that?
And am I a total nut job for even having these thoughts and making a jump from a threat that is supposed to help control behavior to something as morbid as death of a loved one and the emotional damage it might inflict on our poor little vacuumless child?
THIS is where parental idiosyncrasies come into play, and how my work, no matter how hard I try, is going to seep into my raising of my child.
Don't you feel sorry for him?

Wednesday, July 07, 2010

Raring to go!

How do you spell "raring" anyway? I guess since spellcheck didn't flag it, I must have done it correctly.
Anyway.
Okay, I know I ought to be studying right now. I have the stack of notebooks/binders, study guide, etc sitting next to me at the dining table. The pile of stuff is like a pathetic, ignored dog. "Read us, whimper whimper." Eh. Maybe later.
I'm trying to justify my current study avoidance by at least doing other productive things, like renewing my passport, completing my application for permanent medical licensure in the state of Missouri (a TOTAL pain in the arse), working on other "official" doctorly documentation stuff.
BUT what I really want to do is get on with my life as a hospice and palliative medicine fellow!
Last week I was so excited to get to start the very beginning of the journey. Sort of.
Background check: I took a nice long maternity leave, utilizing the "gift" that is FMLA. I took 12 weeks of time out of residency. Now I have to pay back the time. So, technically, I've done the graduation stuff, but officially am still a resident until September 30.
Back to the story.
Last week on July 1 and 2, the hospice and palliative med (heretofore referred to as HPM) had our orientation days. We went over the perfunctory stuff: schedules, policies, goals of fellowship. And then we got to do some fun stuff: LECTURES!
Yep, I'm a total nerd. I was so pumped about getting to sit through a couple of days of lectures. See, finally I'm getting to a point in my education/training/career where I get to focus so much on what I'm actually, genuinely, truly interested in learning! No more sitting through an hour long lecture about the cell receptors involved in organ transplantation rejection and what some scientist is doing to trick those receptors. Now, I get to listen to people I professionally and personally admire discuss topics that apply to our shared field of interest: HPM. So exciting. I was riveted.
What was so exciting, you ask?
Well, we had a talk about management of nausea/vomiting and constipation. Way more exciting than you'd think. Except, these are symptoms that have huge effects on people's quality of life - not the most glamorous - but probably among the most important.
We talked about management of pain, calculating doses of pain medication, changing medications and therefore adjusting doses. A fun little math game, really, in that "word problem" sense. For example:
Your patient, Ms. B, has taken 6 doses of oxycodone over the past day, totalling 30mg. You wish to change her medication from oxycodone to oral morphine. If 20 mg of oxycodone is equivalent to 30 mg of morphine and you plan to allow doses every 6 hours, how much should each dose be?
I have always loved word problems.
There was a brief discussion about the use of social media in raising awareness of the field of HPM and getting word out to the public.
Hello, I'm obsessed with facebook and I have 2 blogs - okay maybe they aren't always that current - but, of course I'm interested in social media!
We also covered applied ethics and its role in HPM. So cool.
We covered communication skills - probably one of the key skills needed for HPM. How we figure out what someone is saying when they can't find the right words or right way to say it. How to tell them what they are ready to hear, and what they need to hear. So many little nuances and so much to learn here.
Then there was the lecture on prognostication (I hate even using the word "lecture" because these are so not lecture-y). Meaning, how do we arrive at our best estimates on the trajectory of disease and the effect it will have on the quality and duration of a life? Phew. Talk about tough.
And, importantly, we talked about the role of self care in the life of the HPM physician. How do we maintain our sanity when we are working daily in a world with so much stress, emotion, chaos, morbidity?
Can you guess how I might choose to help deal with these? Any takers?
And this is my point today: I'm a writer.
I'm not saying I'm a Writer. I'm saying, when it comes to dealing with my inner world, or how my inner world reacts to the rest of the world, or how the rest of he world looks to be functioning, the way I deal is to write.
For the past few months I have been trying to make myself sit down more often and just write. Just do a blog. You might notice after reading my entries that sometimes it takes me a while (a few sentences to a few paragraphs) to get to the meat of the story. It's because I just sit down and start typing. The story eventually comes through. Yes, there is often some back story to trudge through, but eventually, we get there, don't we? Usually?
It's not always exciting. Or gut wrenching. It has up to now been an effort at discipline.
As part of my self care, I am going to renew my efforts. I want to blog more. I would very much like to say I'll blog a little bit every day - but then I just know I'm setting myself up for failure.
I'm going to try, though.
This may actually require splitting my blog (again). There are some things I wrote that I don't care if everyone sees. At times, though, the line between personal and professional needs to be a bit more distinct. One of my hopes would be that if I am able to blog more regularly (goal = 3 times weekly) throughout my fellowship and maybe beyond, that it can be a record and a guide for those who may want to learn and do more in HPM.
SO: if you come to this blog and find it seems a bit different that's why.
Once I make the final split, I'll figure out how to let people know.
Okay, now I guess I ought to pay attention to some of these books over there...

Saturday, May 08, 2010

There but for...

Tonight is my (hopefully) last ever 30-hour in-hospital call. It's strange to think that another phase of my training is drawing to a close and that I'm on the brink of being allowed to practice medicine all on my own. The day started off with the usual parade of inpatient tasks: checking in on patients, reviewing lab results and x-rays, rounding with the attending, note writing. It was a calm day. I was in our resident lounge studying, in fact, and had just dozed off on the comfy sofa when my pager went off.
"Of course," I said, maybe just in my head, maybe out loud. I called back the number and that's when things got a little crazy. Sit tight with me for this story, see, I'm still processing what went on and actually thought sitting down to write about it might help me in some way.
So, I returned the call and was made aware that there was a potentially very sick pediatric patient in the emergency room. The call actually came from a nurse in our pediatric ICU, who was checking with me to get more information about a patient they had heard might be getting admitted to the unit. At that point, I actually hadn't heard anything, but told her I'd look into it by calling the ER.
When the clerk answered the phone in the ER and I identified myself as the pediatric resident on call, she laid out a story: a toddler had been brought in by his parents and he had been immediately put in a room and there was a chance he was going to be intubated and possibly coded, and the ER docs thought maybe he had perforated his bowel. She told me he might be going to the operating room, that the surgeons had been notified.
I called back the ICU and gave them the info, then told them I was going to go to the ER myself to see what was happening.
Walking into the 25+ room/bed emergency department, there was no question as to which of the rooms the toddler was in. There was a crowd of people at the door, a flurry of activity coming in and out of the room. I found another resident, who was working in the ER, and she told me a quick story about the patient. By the time I got to his room, he had been intubated and because they had a very difficult time getting IV access on him, they'd had to place IO lines (IO = intraosseous, something we can do for kids where we put a pretty big needle into the bone in the lower leg so we can give vital medications, fluids, etc). An x-ray was being taken to see of the breathing tube was properly positioned, to try and see if there was a problem in the abdominal cavity, and to see if both of his lungs were inflated. The x-ray showed that he'd possibly had one of his lungs collapse, so the ER doctors and surgery resident prepared to place a tube in his chest to evacuate the air. During this time, the boy's heart began to slow down to a rate that requires us to start chest compressions. We were officially in a full blown code blue.
What happened for the next 25 minutes was a demonstration of what physicians and nurses do to work together to save lives. For a few moments every now and then the room would get a little more tense and on edge, but for the most part what I saw happen was a coordinated effort to bring this boy back from the brink, rescue him from death.
Breath was pumped into his lungs, three of us alternated turns to compress his chest to try and pump his heart for him so blood could flow through his body, needles were stuck into his belly, his chest to suck out air that shouldn't be there and might be compressing vital organs, time was watched to let us know when doses of medications could be given, and all the while the boy was motionless on the bed.
At about the midpoint of the efforts the parents were brought into the room. They saw their boy, they saw a room full of doctors and nurses working to save him. They were too upset to stay in the room, and stepped just outside into the hallway, mom sobbing, dad crying.
There was a moment when his heart began beating again. It showed up on the screen, a flicker of activity, a steady rhythm but not the kind that can actually keep someone alive - but just enough that we felt a weak pulse. A shock of electricity was delivered in the hope that it would "reset" the electrical system of the heart so it would beat properly and strongly on its own. For a minute or two, it did, We could take a break from the chest compressions, but several of us had our eyes on that monitor, watching the heart rhythm to make sure it behaved.
Of course, it didn't.
We went back to compressing the chest. More medications were given. More needles placed. I'm sure more prayers or requests for divine intervention were made.
It gets to a point, though, where everyone in the room starts making eye contact with one another. We all begin glancing around, then glancing back up at the clock. In our minds, thinking, "It's been ___ minutes since we started compressions." We start doing the calculations. Start remembering the basic science. "Brain damage sets in after only 3-4 minutes without fresh oxygen." "Chances of meaningful recovery after severe anoxic brain injury are less than 1%." We know. We don't want to know, but we know. We don't want it to be true.
But, it is. It's enough. We've gotten to the point where we say, "this is all we can do."  It's enough. But when it's a child, the words "we've done enough" seem inadequate. When a child was playing happily this morning and suddenly fell sick this afternoon, and now we are looking at his little body in front of us, how can we feel that we've done enough?
Through the past four years of training, I have seen plenty of patients die. I have been a part of several code blue situations. I have stuck needles and tubes in people. I have done chest compressions. I have squeezed oxygen into their lungs. I have seen most of those people ultimately pronounced dead - either pronounced dead for the cessation of the code, or dying hours to days later after having been hooked up to life support following the resuscitation efforts. Some of those codes and ultimately those deaths came expectedly. Death creeping up, closer and closer, all of us doctors knowing the end was near, unable to convince the patient or the family that a code would fail. Then when the page comes "Code Blue, room ___," we look at our pagers and think, "Of course." Some codes are expected because of a person's age. Are we really that surprised when a 96 year old's heart stops beating? Is it that shocking when a patient with cancer affecting every part of their body succumbs to infection or organ failure?
What I've never done, though, is gone through a code on a child and seen that child die.
I've been a part of a small handful of pediatric code blues. Fortunately, they rarely happen. There are the resuscitations we do one our patients in the neonatal ICU, those babies born 4 months early, who come into the world needing us to basically replace what their mother's womb was doing for them. Those still fall into that "not surprising" category, though. Just like it isn't surprising when a 96 year old heart stops, so it isn't surprising when a 25 week preemie's lungs aren't working.
I've seen a couple of toddlers come in with near drownings, but they ended up getting intubated and going home, seemingly unscathed, within a week each - although I have to say at least one of those kids shocked the heck out of me to have done so well.
This boy, though, was an out of the blue, totally unpredictable, tragic story. He was a healthy toddler. He was a little under the weather yesterday, threw up a few times. Was drinking Pedialyte okay today.
Then, mom and dad noticed he didn't look right. Noticed his belly seemed to be "getting bigger and bigger" then his breathing started getting fast and shallow and he stopped acting alert. They were driving to the hospital as fast as they could, carried their little boy in, handed him over to the team in the ER.
The ER doctors and nurses, the pediatricians, the surgeons all convened on the room, on the boy.
Help him.
Fix him.
Save him.
We tried.
In the end, it wasn't enough. When we say, "that's enough," we know it isn't the "enough" that got the job done.  The enough of "let him go." The enough of "now we need to leave this body alone."
It's the enough of mercy.
We decide we have reached that point. We ask the family to come back in, we keep working. We keep watching the monitors, keep squeezing air into his lungs, keep putting medications into his body. Tonight, I was the one to keep compressing his chest to keep the blood flowing.
The parents come in.
The boy is very sick. He was very sick when you brought him here. You did all you could do. we've done everything we can do. The body has been though a lot. We have been doing all we can do for all this time, are still doing all we can do. We recommend that we stop. We are telling you, "your son is dead."
All that time, while the parents were standing in the room, hearing this news, being told their child's fate was decided, I was pushing on that boys chest. I found myself pushing harder, pushing with all my energy, as if I could elicit the right charge from my body to travel down my arms, into my hands, through his chest and into his heart. Start again, This is your last chance, dammit, if you don't start beating again for us now then you're done. Please, start beating, something. Now...please. Hurry. This is it...
I noticed my vigor increasing, became momentarily singularly focused on trying to get that damn heart to beat again. Then I noticed the hands of the other doctor's and nurses slowing down, drawing back from the boy. Stop the medications. Stop bagging in the oxygen.
Stop compressions.
That's it.
A moment ago, we were keeping you alive. Or at least, "alive."
Now you are dead.
He is dead.
Your son is dead.
Slowly the room cleared out. You don't realize how crowded the room was until people start leaving it.
We removed what we could of medical equipment from his body. Wrapped him in blankets, asked mom and dad if they would like to hold their son.
Mom gathered him in her arms, sobbing over him, rocking him. Saying his name, saying "No."
The other pediatricians and I stayed in the room. Funny how suddenly you look around and everyone who had been so committed to working on keeping him alive leave once there is nothing else medically to be done. We gave them space, tried to comfort them.
It wasn't for about five minutes that when mom looked at her boy in her arms, touched her hand to his forehead and said (in Spanish), "I don't believe it. I can't believe it."
I felt the wave hitting me.
I walked as subtly and quickly as I could out of the room.
The whole time I'd been telling myself, "don't think it. Don't think it."
Then I thought it.
This could be Henry.
Same age.
Same size.
Same thick eyelashes.
If this could be Henry, why wasn't it Henry? How was this boy the one unlucky to be taken from his mother? Or more appropriately, how was this mother chosen as the one to lose her son?
Why not me?
These are thoughts that if you start to let your mind run free with will make you crazy. Make you questions everything "right" and "wrong" in the world. Make you unable to ever let your child or anyone else you love out of your sight. Except these parents didn't let their boy out of their sight, he was with them. He just got really really sick really really fast.
I'm not a religious person, but how many times can you hear the phrase, "there but for the grace of God go I" run through your head? Answer: too many.
So many times that the question becomes nonsensical. Becomes too unbelievable, almost comical.
There but for the "grace" of God go I.
There but for the grace of "God" go I.
(I'm not looking for a religious debate or inspiration here, please)

After the other family members, a chaplain, a social worker all arrived to the ER to the side of the parents, we left. I couldn't get Tommy on the phone fast enough.
"Bring me Henry," I told him. I told him briefly what had happened, told him "I need to hug my boy."
They came to the hospital. I pulled Henry from his car seat. squeezed him tight, tighter. Never tight enough.
There but for the grace of God go I.

Getting to this part of the story, where my work and my life become intersecting with one another makes me eyes well up again. Here I have to put up the mental wall. "You can't let yourself think that way."
So, I have to stop here before my mind goes too close to that wall, before I test those waters and see what happens when the Pandora's box is opened.

Squeeze your babies if you have them. If you don't have them yet, squeeze them every day when you do have them. They are the most overwhelming joyous and heartbreaking thing that will every happen  to you. My heart breaks every day with love for Henry, and just when I think it can't break anymore, it does and heals itself a size bigger than it was the day before. It's the scariest most vulnerable kind of love I've ever felt, and knowing it could be taken away, like that - just like that- is too much for me to even keep thinking about right now.

Tuesday, April 27, 2010

Physician, be thyself

I'm doing one of those things where I sit down and start writing but don't really have a god sense of where this is going to end up going. One of those times when writing is its most therapeutic for the writer because it gives a chance to explore thoughts, feelings, that maybe the writer didn't even have a full knowledge of even being present, much less any understanding of what they mean. So, here goes.
What got me started on this thought process, or more, brought it to the forefront of my mind again, is one of the patients in the hospital.
This young man woke up those morning with two arms, two hands, two legs and two feet.
By this evening, or maybe even by now already, one of those legs and one of those feet are gone.
His leg has been amputated from a point above his knee in order to save the rest of his body from the cancer in that leg. An aggressive cancer. A cancer that still has a fairly disappointing rate of long term survivorship, even with the most advanced and best care.
For the past several weeks, this young man has endured chemotherapy to try and make the tumor as small as possible, as inactive as possible. One of the goals is to be able to stop the tumor's ability to generate its own blood supply - one of the cruel and clever things these beasts of cancer do is to release hormones that tell the host's body to make a rich supply of blood vessels and to make all those blood vessels become direct food lines to itself. Like a dictator country with no oil of its own forcing the inhabitants of its neighboring and oil rich country to build oil lines into the dictating country. The human body, as amazing as it is, responds vigorously to this hormone signal and does its job - it makes blood vessels, and this is one of the ways a tumor becomes parasitic, opportunistic. Before a surgeon goes into the area of the tumor, a goal is to make sure that this area pumping full of blood has been reduced to a trickle.
Another goal of the chemo is to try and ensure that any small, even microscopically small, metastases from the initial large tumor have been made as inactive as possible.  If a patient is giving up a limb, we hope it isn't so that in a few weeks a new tumor, in a part of the body not easily removed or operated on,  will enter a growth spurt. Scientists have speculated that another genius of the tumors is that the largest tumor often releases a hormone that acts on other tumor cells in different parts of the body to make them less active. It tries to inhibit its competition, so to speak. Sometimes when a dominant tumor is removed, and that hormone is no longer being made, the previously inactive tumors start to take off. Cancer is a strange, mystifying thing...
So anyway, this young man has gone through weeks of pre-operative chemotherapy, or as we like to say in fancy terms, adjunctive chemotherapy. Last night he had a hospital room full of friends and family members, gathering around him, supporting him, and I'm sure most of them, especially the adults, wishing that they could take his place tomorrow, wishing they could give up their leg, their adolescence and young adulthood so that this boy could go back to his old life, be free of cancer and the anxiety, fear, frustration, pain that it brings.
None of them can do that for him, though, so bright and early this morning he was taken to the operating room, where one of the nation's most skilled and incredible orthopedic surgeons will remove his leg, his cancer, do her part to give him more years of life and happiness.
I don't have an established relationship with this patient like I do with some of our other patients. I didn't have conversations with him about how he has been feeling going into surgery. I can't tell you he was scared, or hopeful, or acting brave, or any of the things I might be able to say if I knew him better. All I can say is the obvious, and that is: it isn't fair.
The other thing I can say is something many doctors have though to themselves when taking care of patients in dire circumstances: I don't know if I could do it.
This isn't just referring to whether or not we feel like we could handle having a bad disease or diagnosis. This isn't about saying we aren't sure if we could put on  a brave face, have a good attitude, be a "good patient."
What I mean when I say it is different.
I don't know if I could allow my leg to be removed.
I don't know if I could endure chemotherapy.
I don't know if I could spend days, weeks, months in the hospital going through treatments, trying to "get well."
I don't know if I could sit in a bed every day while nurses, doctors, physical therapists came into my room trying to help me get better, when inside my mind, my highly educated mind, I know that my chances of survival or at least a recovery with any quality of life, might be minuscule.
I don't know if I could take those chances.

And this makes me question so many things about myself.
Does it make me superficial to think that I wouldn't be happy living without a leg, or an arm?
To that end, is there a part of my body I would be willing to live without? And does it come with qualification? Like, I would be willing to live without my arm only if it meant I got to live at least 7 more years? 5 more years? 3 more years? What if it was only one more year? Is there a length of life I'd be willing to give up for that arm?
What about my vision? My hearing? What if I had to have a colostomy? What if I was paralyzed?

Does it make me selfish?
There are times when I have thought that I would rather die and leave Henry without me than to endure some of the treatments I have watched my patients endure. If I KNEW I would live, KNEW I would be able to be a god mother, a good wife, a happy person, then it might change my mind. The fact is, though, in medicine, like all of life, there are no guarantees - and I'm not much of a gambler when it comes to some of this stuff.

Does it make me a hypocrite?
I take care of people going through these treatments, encourage them, try to support them. Sometimes when I'm with them, in my mind I keep thinking,
"I would never put myself through this." And there I am, talking to them about their schedule for chemotherapy, procedures, injections, surgeries.

All of us have our own limitations that only we can fully know or try to understand, and of course none of this knowledge is complete until we actually land in the place.
If I was diagnosed with cancer tomorrow, my whole attitude might (would most likely) change in ways that sitting here today, in the sunshine with the warm spring breeze on my face and my sweet little boy sleeping upstairs, I could never predict.

So why even bother worrying about what my reaction might be?
I think it's something we all have to think about, no matter the specifics of our life. Not just doctors, nurses, health care workers. It's something all of us need to think about at some point (this will be another blog).
For those of us in this field, though, I think it is part of our responsibility to those we take care of to put ourselves not only in their shoes, but in their bed. And not with their family surrounding us, but with our families surrounding us, our friends their giving us support (or not giving us support as the case may be - think about it).
The old adage* is "Physician, heal thyself." To that I like to add, "Physician, know thyself." So, this introspection will go on for me, likely until the end of my life, helping me try and find my place in this world, in this profession, in the hearts of those who love me. Part of the experience of being human, isn't it?

*I could have sworn this was a quote from our old friend Billy Shakespeare, but my googling today couldn't help me locate the exact source. Can anyone help me out here?

Followers