So tonight's blog is the first of a two part series dedicated to how I got here and what doctors, in 2009, go through to get trained. I find this an opportune time to write about the subject as our president is currently considering the ever expanding topic of "Healthcare Reform" which most people do not know how to define. In Obama's efforts to reform, much has been speculated about who is to blame and who should pay. Someone, after all, is going to have to give up something or nothing will change. In light of this, Atul Gawanda's recent piece in the New Yorker caught my wife's attention, and then mine:
http://www.newyorker.com/reporting/2009/06/01/090601fa_fact_gawande?currentPage=all
My patient wife has now been with me for seven years, that's seven out of the eight I've been in medical training. My average salary, including the negative $34,000/year in loan debt I was in during medical school and then the $48,000-$54000 salaries I've had in internship, residency and now fellowship comes to an astonishing $8000/year average net in those 8 years. We have squeaked by with moonlighting, and very good money management (by her, thank god!) But needless to say, articles about blaming doctors scare both of us- sitting where we sit- having put in everything to make virtually nothing yet. Especially given how much money insurance companies made last year.
So I'll start at the beginning which is how to get into medical school. Basically, medical school is a daunting task from the moment a young high school student or college student begins to read on what getting in requires. There is the traditional pre-med track which, as of 2009, still includes very unnecessary coursework (physics, organic chemistry, calculus) and a few vital topics including biology, chemistry. At most schools these are the more popular classes and majors. At most schools these are also the toughest to get As in. And you need As. The average GPA for enrollment in a US medical school in 2008 was a 3.76 on a 4 point scale. You also need superb extracurricular activities, letters from multiple professors, and more and more, hands on experience in the form of volunteer work or real work. An increasing number of applicants are graduating and becoming EMTs or paramedics or nurses prior to applying to medical school. They are well ahead of the traditional track college grads in terms of real life experience (something I think vital to becoming a well-rounded young doctor).
As for the odds: According to the American Association of Medical Colleges, in 2008, there were 558,053 applications from 42,231 applicants, (an average of 13 applications per applicant) to US medical schools. Of these 42,231, there are 18,036 spots to fill. So approximately 1 out of 3 applicants lands a coveted spot. An approximately 2 out of 3 do not. That's 2/3 of people going through all of the same training, coursework, letters, applications (13!) and interviews as their more fortunate peers who are told "maybe next year." That's right, interviews. One needs to travel at his or hr expense to the medical schools for rigorous interviews where everything is asked from, "How much money do you expect to pay on your own and how much are your parents going to pay?" (which one of my friends whose parents were dead was asked at a certain southern state school) to "Who is your favorite American Idol?" Most of the questions are geared towards seeing how you do under pressure. And many of these quizzes have no right answer. One famous admissions director was known for theatrics, often leaving the room during his interviews for an uncomfortable amount of time. I interviewed at 9 medical schools in 2000-2001, and I left 9 interviews feeling odd, and somehow wronged.
So if you are in the lucky third, you're in! And then comes the biggest reality check of your life: Medical school is hard. It's really, really hard. For two years you memorize the equivalent of the New York City phone book. I counted tests one semester in my second year: 37. I was tested 37 times in 21 weeks. Almost two tests a week. After a while the multiple choice bubbles all look the same, and the books all sound the same. And then comes the first of 4 huge national tests, the United States Medical Licensing Examination (USMLE) step one. This is notoriously the worst experience of everyone's life. It's a testament to minutia, a dedication to memory and unimportant tidbits. The stuff written at the side margin of page 238: That's tested. The stuff mumbled once by a professor who barely spoke English: On the test. And it's 8 hours long, at a computer testing center, usually somewhere you've never been before. Most students set aside approximately one month in order to prepare for Step 1. Most medical schools build this study period into their curriculum as a "vacation" period between the second and third years. While text books from classes and review books are a large part of preparation, commercial test-prep services and software are extensively used. This represents an additional $500-$1500 out of pocket expense.
If all goes well, you pass. by report, 7 out of 100 in my medical school class did not and repeated the test. Once complete, you move on to the third year of medical school and things really heat up. Third year is sort of like playing pro-football with no pads and no experience. You are rounding daily with medical teams, always judged by your smile and apparent willingness to learn, a tough thing to keep up as the days grow longer and the tasks grow more mundane. For instance, on my surgery rotation, I stood for 11 hours once holding a retractor in place. I did not ask to go to the bathroom (that is unheard of). I did not eat. I just stood, in place, holding for 11 hours. On my medicine rotation, I was once asked to "support" a patient's testicles while someone scraped the skin beneath them into a vial. And on and on the stories go. The good news is that, luckily, you're learning the whole time, and hopefully you have not decided yet that this profession is for fools but rather it is a privilege to be there (which was a tough sell on testicle night!) In truth, in the first two years you learn the words and alphabet of medicine. In the third year you get dropped off in the foreign country for immersion. The experiences are unforgettable, and often difficult. I had never actually witnessed someone breathe their last breath. I had never seen an ulcer so deep that the bones and muscles were exposed all the way down. I had never seen a husband lose a wife, or an old person dying alone, or someone on the brink of dying walk out of the hospital a week later.
Meanwhile, the grades pour in. I was evaluated for my six rotations an average of 14 times per rotation. Most of these evaluations are subjective. The surgery resident who cheated on his girlfriend in front of me at a bar one night evaluated me poorly. There was nothing I could say. By and large, having now been on the flip side as the evaluator, I think it entirely (with a few exceptions) the fault of the residents and attending physicians if a student under their tutelage does not excel. Everyone has passed the brightness test, some just needs constructive feedback early on to help shape behavior and learning. One of the more detested med students I encountered got a much needed sit down by an attending 2 weeks into his medicine rotation on my service and ended up a superstar. It turned out that she was terrified, and overcompensated by coming across arrogant. And that emotional roller coaster, mixed with terrifying immersion is the third year of medical school.
And the truth is, med school could and probably should end there. By the end of third year, students have rotated through Medicine, Surgery, OBGYN, Psychiatry, Family Medicine (in some places), Pediatrics and occasionally Neurology and are prepared to chose their paths. So then you wait another year, taking electives and as much time as you can to your family and friends before Internship. First, of course, two more step exams for the USMLE. One (Step 2 CS) requires travel to one of six US cities where fake patients are arranged with fake ailments and grade you according to your diagnostic skill, physical exam prowess, and generally, how not creepy you are. This costs $1000 plus travel. The other is Step 2 CK. For most people, this is easier than Step 1. And most do better (as did I) on this exam. But for me, I found it a more terrifying task. Partly, perhaps, because it is 9 hours long. But mostly because I felt a strong sense of responsibility to pass- a voice inside me begging: "You can't screw this up, or you're a shitty doctor." I've never felt pressure like that. And that was only the first of so many times that I felt that way.
My next entry will focus on Internships and Residency. But before I part I will say this for medical school, and pre-med as well: Only fools go so far as to get into medical school these days without a clue of what is to come. There is a reason, in times of economic prosperity, that the number applications for enrollment to US medical schools plummet and then peak in times of trouble: Other jobs represent easier earned money. But the day I graduated from medical school, not yet knowing that I knew nothing still, I felt a sense of joy that I had chosen a path that asked everything of me. It was a humbling experience, really, to take the diploma from the Dean of Students' hand. I knew now that there was no turning back, and that I was truly a step closer to my dream. I just didn't know yet what that dream really encompassed.
Sunday, June 21, 2009
Wednesday, June 17, 2009
Breath by breath
At 9am this morning I sat on a pleasant 40 something year old woman's bed. The sun was dancing off the buildings out her 14th floor windows, splashing Boston with the energetic glow of late spring. I took a breath and thought about that breath. Once, when I was an inpatient, I counted breaths for hours. I listened to the ins and outs, and pondered day after day about how much I had taken for granted, like the invisible air around me, or brushing my own teeth, or taking a shower, or walking. The woman on whose bed I sat has a limited number of breaths left in her lungs. But hopefully she was not partaking in my maddening count. She has more important things on her mind, like the fact that she is scheduled for a bilateral lung transplant in a month or so. That means, in English, that she is going to have both of someone else's lungs replace her own- an absolutely mind blowing feat of modern technology, medicine, thinking and reasoning. But the back story, and what has transpired in the past week which lead me to her bedside this morning is more amazing than the surgery itself.
6 years ago, this pleasant mother and wife developed a cough. She thought nothing of it for about a half of a year, and then, at the suggestion of a friend, she sought advice from her doctor. She was prescribed cough medicines and after another month an X-ray was done which was fairly unremarkable. But as the cough persisted, she underwent a CT scan and that revealed pulmonary fibrosis, or scarring of the lungs. At the time the scarring was minimal, and she was followed closely by a pulmonologist who measured her lung function and noted, throughout the next year that this steadily declined. At the time she also had hoarseness and saw a gastroenterologist who prescribed an antacid. The gastroenterologist also performed an endoscopy, looking into her stomach and small bowel. All seemed fairly normal and life went on.
Over the next 5 years, her lungs steadily declined. The working diagnosis was "Idiopathic Pulmonary Fibrosis" which means "Fibrosis for god knows why." In fact, the word "Idiopathic" scares me as a doctor for that is when we reach the boundary between what we know and what we do not know and admit defeat. Almost every organ has its idiopathic conditions. Strictly speaking, the word is defined as: Arising spontaneously or from an obscure or unknown cause. It hails originally from the Greek ἴδιος, idios (one's own) + πάθος, pathos (suffering), and translates more appropriately to something like "a disease of its own kind." All in all, if you get sick, you don't want the word idiopathic thrown in- because usually "there is very little we can do" soon follows. Eventually, as many who suffer from debilitating lung disease come to learn, the pressures in her pulmonary artery increased leading to pulmonary hypertension and subsequent heart disease as well. In those same 5 years, she had 2 additional endoscopies performed by her gastroenterologist for progressive food sticking. Swallowing became a nuisance for her, and while she got most foods down, it often took water to "rinse" down a meal before she felt like it was out of her chest.
I met her last week, when the team caring for her called a gastroenterology consult on the supposed last day of her admission. She was in the hospital for a pre-transplant evaluation, when a series of tests are performed to evaluate how someone is doing from a lung perspective and how they will do post-operatively. She happened to mention the swallowing issue and an astute intern thought it was worth mentioning to an equally astute surgeon who called our team to see her. Luckily for me, I was on call that day, which meant that I was answering pages (38 that morning). I eventually made my way to her chart, and then to her and listened to the whole story. I asked her about her swallowing, and found out an amazing amount of detail about the sensation of food sticking, about what brought it on, and when. I found out that cold foods sometimes triggered her symptoms. I found out that she often felt yesterday's meal still "sitting there" and pointed to her chest.
The next day I was staring in awe at the film I had asked her surgeons to obtain. A film of her esophagus after she swallowed barium contrast. And the esophagus narrowed to a point, or the so-called "bird's beak" which is hallmark for a disease called Achalasia. A day later I had a tube placed from her nose into her stomach with pressure readings taken over an hour including when she swallowed. The manometric readings from that esophageal motility study confirmed the diagnosis.
Achalasia isn't so incredibly uncommon. I've diagnosed this 4 times this year and will see it again many times in my career. The treatments vary but involve opening the dysfunctional muscular sphincter at the bottom of the esophagus to allow the equally dysfunctional pipe-like esophagus to pass food by gravity, for the normal waves of contraction that aid food into the stomach are absent. But perhaps the most under appreciated side effect of achalasia, and one which makes this a sad story, is that of aspiration. Food stuck in the esophagus, and acidified liquids can reflux backwards, spill over the epiglottis into the trachea (the windpipe) and then move downward by gravity into the lungs. While the food itself usually doesn't present the biggest problem, the chemicals and acids which spill cause a condition called pneumonitis which, over time, can ruin perfectly good lungs.
This woman didn't have idiopathic anything. She had a longstanding condition in her esophagus which ruined her lungs. Three times a gastroenterologist performed an investigation with a camera (as I did the day after the diagnosis was confirmed), and three times he found nothing (as did I). In fact, Achalasia is not diagnosed by endoscopy. The tissue looks perfectly normal. The damage is at the level of nerves, and the dysfunction is best captured by imaging and manometry.
It is so easy, in medicine, to point a finger. We doctors love to talk about 20/20 hindsight. Coming in later in the game is always an advantage. Someone else's negative workup allows you not the stumble down the same pathway. But 3 tests? All the same test? This seemed quite odd.
What astounded me more, as I sat on her bed and watched a plane gain altitude over the city, was that she called her gastroenterologist yesterday and told him what had transpired- that this was Achalasia after all of these years, and that she was angry with him. He said that there was nothing we would be able to do. He told her this was something she would have to live with, and that ours was a wasted effort. When she told me this we both smiled. Because yesterday, after I was finished with the investigatory portion of my endoscopy, I injected botulinum toxin (botox) into the sphincter at the base of her esophagus through a special needle that fits into the channel of the scope. As a result, she enjoyed dinner last night for the first time in 5 years.
She will get a lung transplant. And before then she'll have a definitive esophageal surgery to cut the muscle holding that sphincter (botox only lasts a few months). And she will have new lungs that are spared the acid that ate her current ones. And then she can watch her kids grow up, and share a pizza with them, and share their laughter.
On her bed today, I had questions: What if this had been diagnosed 5 years ago? Who is that arrogant doctor (and in my field no less!)? Will she beat the odds and actually live more than 6-10 years after her operation? Is she better off knowing the diagnosis now? And knowing it was missed? Did I do her a service after all? Is there bliss in "idiopathic?" In ignorance? But I just sat there and shared a laugh with her as she enjoyed a pancake- neither of us taking a bite of it for granted.
6 years ago, this pleasant mother and wife developed a cough. She thought nothing of it for about a half of a year, and then, at the suggestion of a friend, she sought advice from her doctor. She was prescribed cough medicines and after another month an X-ray was done which was fairly unremarkable. But as the cough persisted, she underwent a CT scan and that revealed pulmonary fibrosis, or scarring of the lungs. At the time the scarring was minimal, and she was followed closely by a pulmonologist who measured her lung function and noted, throughout the next year that this steadily declined. At the time she also had hoarseness and saw a gastroenterologist who prescribed an antacid. The gastroenterologist also performed an endoscopy, looking into her stomach and small bowel. All seemed fairly normal and life went on.
Over the next 5 years, her lungs steadily declined. The working diagnosis was "Idiopathic Pulmonary Fibrosis" which means "Fibrosis for god knows why." In fact, the word "Idiopathic" scares me as a doctor for that is when we reach the boundary between what we know and what we do not know and admit defeat. Almost every organ has its idiopathic conditions. Strictly speaking, the word is defined as: Arising spontaneously or from an obscure or unknown cause. It hails originally from the Greek ἴδιος, idios (one's own) + πάθος, pathos (suffering), and translates more appropriately to something like "a disease of its own kind." All in all, if you get sick, you don't want the word idiopathic thrown in- because usually "there is very little we can do" soon follows. Eventually, as many who suffer from debilitating lung disease come to learn, the pressures in her pulmonary artery increased leading to pulmonary hypertension and subsequent heart disease as well. In those same 5 years, she had 2 additional endoscopies performed by her gastroenterologist for progressive food sticking. Swallowing became a nuisance for her, and while she got most foods down, it often took water to "rinse" down a meal before she felt like it was out of her chest.
I met her last week, when the team caring for her called a gastroenterology consult on the supposed last day of her admission. She was in the hospital for a pre-transplant evaluation, when a series of tests are performed to evaluate how someone is doing from a lung perspective and how they will do post-operatively. She happened to mention the swallowing issue and an astute intern thought it was worth mentioning to an equally astute surgeon who called our team to see her. Luckily for me, I was on call that day, which meant that I was answering pages (38 that morning). I eventually made my way to her chart, and then to her and listened to the whole story. I asked her about her swallowing, and found out an amazing amount of detail about the sensation of food sticking, about what brought it on, and when. I found out that cold foods sometimes triggered her symptoms. I found out that she often felt yesterday's meal still "sitting there" and pointed to her chest.
The next day I was staring in awe at the film I had asked her surgeons to obtain. A film of her esophagus after she swallowed barium contrast. And the esophagus narrowed to a point, or the so-called "bird's beak" which is hallmark for a disease called Achalasia. A day later I had a tube placed from her nose into her stomach with pressure readings taken over an hour including when she swallowed. The manometric readings from that esophageal motility study confirmed the diagnosis.
Achalasia isn't so incredibly uncommon. I've diagnosed this 4 times this year and will see it again many times in my career. The treatments vary but involve opening the dysfunctional muscular sphincter at the bottom of the esophagus to allow the equally dysfunctional pipe-like esophagus to pass food by gravity, for the normal waves of contraction that aid food into the stomach are absent. But perhaps the most under appreciated side effect of achalasia, and one which makes this a sad story, is that of aspiration. Food stuck in the esophagus, and acidified liquids can reflux backwards, spill over the epiglottis into the trachea (the windpipe) and then move downward by gravity into the lungs. While the food itself usually doesn't present the biggest problem, the chemicals and acids which spill cause a condition called pneumonitis which, over time, can ruin perfectly good lungs.
This woman didn't have idiopathic anything. She had a longstanding condition in her esophagus which ruined her lungs. Three times a gastroenterologist performed an investigation with a camera (as I did the day after the diagnosis was confirmed), and three times he found nothing (as did I). In fact, Achalasia is not diagnosed by endoscopy. The tissue looks perfectly normal. The damage is at the level of nerves, and the dysfunction is best captured by imaging and manometry.
It is so easy, in medicine, to point a finger. We doctors love to talk about 20/20 hindsight. Coming in later in the game is always an advantage. Someone else's negative workup allows you not the stumble down the same pathway. But 3 tests? All the same test? This seemed quite odd.
What astounded me more, as I sat on her bed and watched a plane gain altitude over the city, was that she called her gastroenterologist yesterday and told him what had transpired- that this was Achalasia after all of these years, and that she was angry with him. He said that there was nothing we would be able to do. He told her this was something she would have to live with, and that ours was a wasted effort. When she told me this we both smiled. Because yesterday, after I was finished with the investigatory portion of my endoscopy, I injected botulinum toxin (botox) into the sphincter at the base of her esophagus through a special needle that fits into the channel of the scope. As a result, she enjoyed dinner last night for the first time in 5 years.
She will get a lung transplant. And before then she'll have a definitive esophageal surgery to cut the muscle holding that sphincter (botox only lasts a few months). And she will have new lungs that are spared the acid that ate her current ones. And then she can watch her kids grow up, and share a pizza with them, and share their laughter.
On her bed today, I had questions: What if this had been diagnosed 5 years ago? Who is that arrogant doctor (and in my field no less!)? Will she beat the odds and actually live more than 6-10 years after her operation? Is she better off knowing the diagnosis now? And knowing it was missed? Did I do her a service after all? Is there bliss in "idiopathic?" In ignorance? But I just sat there and shared a laugh with her as she enjoyed a pancake- neither of us taking a bite of it for granted.
Saturday, June 13, 2009
Our fault
I am in a unique place, as a budding gastroenterologist. For one, I am a subspecialist. I am board certified (after several one or two day multiple choice examinations and 7 years of post college training) in internal medicine. Now, like many of my peers, I have chosen years 8-10, to learn in depth about one organ system. In my case, it is a love of all things digestive, or, as I joke with my friends: "everything from the mouth to the bum including the liver and the pancreas." One thing that I like particularly about my field is the fact that I can help people with many of their ailments. And when I cannot, I can either turn the patients over to doctors who can (for instance in the case of cancers, where oncologists or surgeons become part of the care team), or I can provide support in other ways (like sending my patient with intractable nausea to an acupuncturist last month- yes, it worked!) Sharing in care is one of the great joys of being a doctor. Each time I call or email a specialist in a different field I am astounded by what there is to learn, and eager to hear their perspective which is often grounded in how they see the body or have been trained to see. But last month, in sharing a patient with a particular cancer specialist, I learned a harrowing lesson about how medical doctors may be contributing to the problems I have alluded to in earlier posts with end-of-life care. Tonight I share this experience:
My patient is a sad story. At 17 she had her first of 3 children all by different men, two of whom are alcoholics who she kicked out of her home years ago. At 28 she lost her job and shortly thereafter got into a car accident and was on disability for years. At 39 she saw a physician for constipation who discovered that she had anemia as well and she underwent a colonoscopy and was found to have stage 4 colon cancer with metastases to her liver. So now, at 40 she has a 23 year old, a 19 year old and an 11 year old. She could not afford college for the older kids so they did not attend. She had trouble motivating them without a father figure in their lives. So this is hard: A 40 year old mother of 3 who will be dead in a year or two. As it turns out, her mother died of colon cancer in her 50s. She never told anyone that until it was too late.
It is here where the branch point begins. There are probably a thousand different paths we doctors could take at this stage. Here are 3 such paths:
1) There are new drugs out there, and protocols for drugs yet to be tested in the human body. The consent forms for enrollment into these studies are long and tedious due to the liability which needs to be carefully explained to the patient. Hours are spent on education and most of the education is in what can go awry. Complete understanding needs to be demonstrated by the patient (which requires a fair amount of intelligence that many lack) in order to enroll. Once enrolled, the patient needs to be compliant with the protocol, often involving stopping other medications, or eating certain foods. Protocols are strict about getting scheduled blood draws, showing up to doctor's appointments, returning screening phone calls. As one patient smartly put it once, "this miracle pill thing is a full time job." And the truth is, of all of the drugs out there in protocols, the vast majority will not cure the illness. In many cancers, a "success" is an additional 2 months of life. And at what cost? The side effects of these agents can be horrific. I watched a patient turn green and lose her hair in 3 days once on a new medication that was supposed to extend her life. On the flip side- think for a moment about that 11 year old. Isn't every moment with a mother a moment worth living? Before I had my daughter I might have flippantly judged a patient willing to sacrifice quality of life over days on Earth- now I have to think twice.
2) You are dying and I am going to help you have a wonderful death. Yes, I wrote "wonderful death." There is such a thing. We talk about good and bad deaths all of the time in the hospital but we don't always know what we're trying to say. Here's a good death: A 72 year old composer died last year in the ICU when I was rotating there with his 4 children and wife by his side and his favorite cello concerto playing on a CD player. He had not a single IV in his arm when he died. The room was quiet and they cried and laughed and spent 2 extra hours with him even after he passed. It was the most peaceful, beautiful death I've ever seen. And I felt honored to be a part of that. Now here's a bad death I witnessed: A 59 year old grandmother of 4 died slowly after months of inoperable gallbladder cancer and a total of 14 procedures including surgeries to relieve bowel obstructions. She died in an ICU over 11 days as the medical team pleaded with the family to reverse her code status should she go into respiratory of cardiac failure. 3 family members did not want her resuscitated but her official health care proxy was her eldest daughter who kept her code status as "full" and she then underwent 2 separate cardiac arrests requiring CPR and shocks in the final week of her life. After she died, the family members who wished for her to not receive the resuscitations did not speak to the daughter or the doctors out of anger.
3) You are going to die, but you can fight fight fight and I will fight with you. This is perhaps the most common scenario. The drugs that exist do delay death, and despite their side effects, patients often chose hair loss, nausea, weight loss over an early exit. In this case, the doctor is the mediator and the bulldog. This is often the oncologic stance.
In each scenario the doctor has a role- we are salesmen, biased by our own ethics and morals and religious beliefs and backgrounds and sometimes even by money (this one makes me sick). And in those moments of utter helplessness, patients turn to us as if we had divine insights- which we do not (although this scene from Malice is worth a much needed laugh right now! http://www.youtube.com/watch?v=LqeC3BPYTmE). At the end of the day, we bias our patients left and right, whether we admit it or not.
My unfortunate 40 year old patient was told, by her oncologist, "We can prolong your life." She was told, "We can give you time." The doctor that day never said "We can give you quality life and quality time." She bought it. She is now hairless, upset, in the hospital, and beginning to die a bad death. In the end this is her choice. But I am not at all convinced that she had the tools to begin with to understand her choices despite her clear thinking and ability to demonstrate some basic knowledge of her decision. Perhaps an ethics board should convene for each and every dying patient, early in their disease if possible, to discuss their options for them. These could be explained to the patient carefully and meticulously and a truly informed decision could be rendered. But this would cost money and time, neither of which is readily available in today's world.
At the end of the day, she will live a month or two longer in and out of the hospital than she would have staying at home, with her 11 year old by her side- a boy who had a chance to learn a vital lesson in what constitutes a good death- albeit at a much too early age.
My patient is a sad story. At 17 she had her first of 3 children all by different men, two of whom are alcoholics who she kicked out of her home years ago. At 28 she lost her job and shortly thereafter got into a car accident and was on disability for years. At 39 she saw a physician for constipation who discovered that she had anemia as well and she underwent a colonoscopy and was found to have stage 4 colon cancer with metastases to her liver. So now, at 40 she has a 23 year old, a 19 year old and an 11 year old. She could not afford college for the older kids so they did not attend. She had trouble motivating them without a father figure in their lives. So this is hard: A 40 year old mother of 3 who will be dead in a year or two. As it turns out, her mother died of colon cancer in her 50s. She never told anyone that until it was too late.
It is here where the branch point begins. There are probably a thousand different paths we doctors could take at this stage. Here are 3 such paths:
1) There are new drugs out there, and protocols for drugs yet to be tested in the human body. The consent forms for enrollment into these studies are long and tedious due to the liability which needs to be carefully explained to the patient. Hours are spent on education and most of the education is in what can go awry. Complete understanding needs to be demonstrated by the patient (which requires a fair amount of intelligence that many lack) in order to enroll. Once enrolled, the patient needs to be compliant with the protocol, often involving stopping other medications, or eating certain foods. Protocols are strict about getting scheduled blood draws, showing up to doctor's appointments, returning screening phone calls. As one patient smartly put it once, "this miracle pill thing is a full time job." And the truth is, of all of the drugs out there in protocols, the vast majority will not cure the illness. In many cancers, a "success" is an additional 2 months of life. And at what cost? The side effects of these agents can be horrific. I watched a patient turn green and lose her hair in 3 days once on a new medication that was supposed to extend her life. On the flip side- think for a moment about that 11 year old. Isn't every moment with a mother a moment worth living? Before I had my daughter I might have flippantly judged a patient willing to sacrifice quality of life over days on Earth- now I have to think twice.
2) You are dying and I am going to help you have a wonderful death. Yes, I wrote "wonderful death." There is such a thing. We talk about good and bad deaths all of the time in the hospital but we don't always know what we're trying to say. Here's a good death: A 72 year old composer died last year in the ICU when I was rotating there with his 4 children and wife by his side and his favorite cello concerto playing on a CD player. He had not a single IV in his arm when he died. The room was quiet and they cried and laughed and spent 2 extra hours with him even after he passed. It was the most peaceful, beautiful death I've ever seen. And I felt honored to be a part of that. Now here's a bad death I witnessed: A 59 year old grandmother of 4 died slowly after months of inoperable gallbladder cancer and a total of 14 procedures including surgeries to relieve bowel obstructions. She died in an ICU over 11 days as the medical team pleaded with the family to reverse her code status should she go into respiratory of cardiac failure. 3 family members did not want her resuscitated but her official health care proxy was her eldest daughter who kept her code status as "full" and she then underwent 2 separate cardiac arrests requiring CPR and shocks in the final week of her life. After she died, the family members who wished for her to not receive the resuscitations did not speak to the daughter or the doctors out of anger.
3) You are going to die, but you can fight fight fight and I will fight with you. This is perhaps the most common scenario. The drugs that exist do delay death, and despite their side effects, patients often chose hair loss, nausea, weight loss over an early exit. In this case, the doctor is the mediator and the bulldog. This is often the oncologic stance.
In each scenario the doctor has a role- we are salesmen, biased by our own ethics and morals and religious beliefs and backgrounds and sometimes even by money (this one makes me sick). And in those moments of utter helplessness, patients turn to us as if we had divine insights- which we do not (although this scene from Malice is worth a much needed laugh right now! http://www.youtube.com/watch?v=LqeC3BPYTmE). At the end of the day, we bias our patients left and right, whether we admit it or not.
My unfortunate 40 year old patient was told, by her oncologist, "We can prolong your life." She was told, "We can give you time." The doctor that day never said "We can give you quality life and quality time." She bought it. She is now hairless, upset, in the hospital, and beginning to die a bad death. In the end this is her choice. But I am not at all convinced that she had the tools to begin with to understand her choices despite her clear thinking and ability to demonstrate some basic knowledge of her decision. Perhaps an ethics board should convene for each and every dying patient, early in their disease if possible, to discuss their options for them. These could be explained to the patient carefully and meticulously and a truly informed decision could be rendered. But this would cost money and time, neither of which is readily available in today's world.
At the end of the day, she will live a month or two longer in and out of the hospital than she would have staying at home, with her 11 year old by her side- a boy who had a chance to learn a vital lesson in what constitutes a good death- albeit at a much too early age.
Sunday, June 7, 2009
Time's up
Last evening at 3am during a moonlighting shift, (translation: extra work as an in-hospital overnight doctor for the money I need to sustain my family), I got a call from the ICU that every doctor dreads. The conversation went something like this:
Nurse: "Doctor, patient X has no traceable blood pressure, is on multiple pressors [medications to maintain his blood pressure] and has blue hands now. His wife is in the room and would like to speak with you."
Me (half asleep in between admitting 7 patients in the emergency room): "Why is he on multiple pressors? Why is he in the ICU?"
Nurse: "He coded 3 times today and underwent CPR for an hour with multiple defibrillations (shocks) and then had a full pulseless arrest and then finally came back with multiple resuscitation attempts and is now intubated [on a breathing tube] in our unit."
Me: "And the family knows his outlook and wants our aggressive care?"
Nurse: "Well- I'm not sure...."
Me (now much more awake): "I'm on my way."
So I arrived in the ICU, room 12, to find a kind woman sitting calmly at the end of my intubated patient's bed. His hands were indeed blue. That was secondary to our medications. His breathing was 100% automated by our machine. How much brain function he had remained unclear, but he was 85 years old and had undergone over an hour of intense resuscitation requiring the cracking of several ribs during CPR, placement of invasive lines, strangers hands everywhere- in every orifice- in an ignorant attempt to cheat the inevitable.
Of course, at 3am, standing before his wife of 58 years, who was I to judge or divulge? Will I not, one day, faced with the exquisitely painful moment of my own spouse's death, ask for anything and everything possible to relieve me of all of that? Believe it or not, I don't think so. The truth is, in these years, seeing so many bodies take their last breaths (as every doctor does over time), I understand clearly that life ends, and that it is not up to us to decide when. I've seen wonderful 30 year old mothers die with their husband and toddlers at her side. And I've seen miserly old women die friendless and alone. And in both cases, the body could no longer sustain itself. As clear as it could be in these instances, it was time, even if the death itself seemed untimely.
In the next 10 minutes, I discovered everything. I found out that they met in high school. That he smoked and that she loved that about him. "It made him seem so cool" she told me. "And he was cool." Certainly it sounded that way to me. This man, who had worked construction before becoming a successful building inspector- had started a business with his own hands and become a complete success. And his daughter, weeping quietly in the corner, proved that he was leaving a compassionate legacy that will carry his name and his DNA forward.
Then I laid out the prognosis: that he would surely be dead in a matter of hours. I am not cavalier about divulging such statements. In fact, I, like most of my peers, hate to prognosticate as we doctors take the huge risk, when doing so, that we will face anger from families and our own guilt if we are wrong. But in this case it was inevitable that he was dying. So I asked his wife what he would want, in his final hours.
"Not this," she said, "god not this."
Within an hour the tubes were removed, and the lights dimmed, and a quiet room was established where his 3 daughters now sat with their mother beside him. A final family moment before, like the cobalt sky of pre-dawn, he was gone.
Nurse: "Doctor, patient X has no traceable blood pressure, is on multiple pressors [medications to maintain his blood pressure] and has blue hands now. His wife is in the room and would like to speak with you."
Me (half asleep in between admitting 7 patients in the emergency room): "Why is he on multiple pressors? Why is he in the ICU?"
Nurse: "He coded 3 times today and underwent CPR for an hour with multiple defibrillations (shocks) and then had a full pulseless arrest and then finally came back with multiple resuscitation attempts and is now intubated [on a breathing tube] in our unit."
Me: "And the family knows his outlook and wants our aggressive care?"
Nurse: "Well- I'm not sure...."
Me (now much more awake): "I'm on my way."
So I arrived in the ICU, room 12, to find a kind woman sitting calmly at the end of my intubated patient's bed. His hands were indeed blue. That was secondary to our medications. His breathing was 100% automated by our machine. How much brain function he had remained unclear, but he was 85 years old and had undergone over an hour of intense resuscitation requiring the cracking of several ribs during CPR, placement of invasive lines, strangers hands everywhere- in every orifice- in an ignorant attempt to cheat the inevitable.
Of course, at 3am, standing before his wife of 58 years, who was I to judge or divulge? Will I not, one day, faced with the exquisitely painful moment of my own spouse's death, ask for anything and everything possible to relieve me of all of that? Believe it or not, I don't think so. The truth is, in these years, seeing so many bodies take their last breaths (as every doctor does over time), I understand clearly that life ends, and that it is not up to us to decide when. I've seen wonderful 30 year old mothers die with their husband and toddlers at her side. And I've seen miserly old women die friendless and alone. And in both cases, the body could no longer sustain itself. As clear as it could be in these instances, it was time, even if the death itself seemed untimely.
In the next 10 minutes, I discovered everything. I found out that they met in high school. That he smoked and that she loved that about him. "It made him seem so cool" she told me. "And he was cool." Certainly it sounded that way to me. This man, who had worked construction before becoming a successful building inspector- had started a business with his own hands and become a complete success. And his daughter, weeping quietly in the corner, proved that he was leaving a compassionate legacy that will carry his name and his DNA forward.
Then I laid out the prognosis: that he would surely be dead in a matter of hours. I am not cavalier about divulging such statements. In fact, I, like most of my peers, hate to prognosticate as we doctors take the huge risk, when doing so, that we will face anger from families and our own guilt if we are wrong. But in this case it was inevitable that he was dying. So I asked his wife what he would want, in his final hours.
"Not this," she said, "god not this."
Within an hour the tubes were removed, and the lights dimmed, and a quiet room was established where his 3 daughters now sat with their mother beside him. A final family moment before, like the cobalt sky of pre-dawn, he was gone.
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