In describing why Cooper Union, a unique college that offers absolutely free education to students, would effectively die if it starts charging tuition, Kevin Slavin wrote:
"For many of us, Cooper wasn't even the cheapest way to go to school...So the question is: why did we go? We went not because of the financial value of free--that is, zero tuition--but rather, because of the academic value of free. At Cooper Union I was paid poorly, and I was proud of it. I would have worked all day just to be able to teach at Cooper Union at night. I would never have done that in an institution that charged their students. Because "free" affects far more than a fiscal bottom line. It affects the intentions, behavior, ambition, and performance of everyone in the system. In other words, it determines the academic quality."
Kevin Slavin, an alumni and a teacher of Cooper Union, understood that money affects human motivation, and not in a good way. The phenomenon he describes is equally true in medicine.
Let me give you an example. I work in an academic hospital, one so large that it was impossible to survive financially without succumbing to the craze of monetary carrots-and-sticks that is sweeping the nation, such as Physician Quality Reporting System (PQRS), a Center for Medicare and Medicaid Services (CMS) initiative to promote better health outcomes through incentive payments/penalties.* Unfortunately, the actual outcomes are not what was intended, and the road to hell is truly paved with good intentions.
As a geriatrician caring for older adults, I would be remiss if I do not engage my patients in advanced care planning - helping them pick health care proxies in the event that they cannot make decisions for themselves, explaining the details of mechanical intubation, guiding them through the conversations of how to obtain a good death. These are difficult conversations - taxing, uncomfortable, time-consuming. But, I often stay late at work, skipping meals and foregoing sleep, to make sure I give these conversations the time and sensitivity that they deserve.
Why did I stay late? I sure was not paid overtime, not that overtime would make me stay longer. I was not paid by the number of health care proxy forms that I filled. Money does not drive me, and doctors should not be reduced to horses that live for a carrot on a stick. I helped my patients plan for the future because I care that their wishes regarding their life and health are followed, because it matters to me that I do a good job.
Sure, it makes sense that doctors are driven by altruism, but how is money as motivation detrimental?
Here's how: in an attempt to succeed in the age of carrots-and-sticks, my outpatient geriatric clinic created a competition in which the clinic provider with the most documented health care proxy forms filled wins a $100. It did not matter how many health care proxy forms were actually completed in reality, because that number was never used to determine the winner - only health care proxy forms recorded in the right slot on electronic medical records count, because those are the ones our clinic will get paid for. It was never said but one notion was undeniably true - the most important and direct purpose of this effort was to get the clinic paid. Having care plans for our patients was a side event.
Because advanced care planning slots in the electronic medical records were inadequate, undescriptive and user-unfriendly, I recorded my patients' wishes in free text. To reflexively participate in our clinic's proxy-form sweep stake, I would spend time transferring my free-text work into slots of electronic zeros and ones that count for money. That time cannot be spent on something else, like caring for patients or educating myself to become a better doctor, because time is limited, and knowing this I refused to participate in this shenanigan. I refused to be reduced to a primitive horse.
Once upon a time I happened upon a CMS policy maker and commented to her that incentive payments are not effective in achieving desirable outcomes in healthcare.
"What do you mean? Of course money motivates people. You don't think doctors' behaviors are motivated by money?" she interrupted the conversation, incredulous.
I replied, disillusioned by what I was hearing, "I hope not." I hoped, then and always, that doctors do what we do because our job is a calling.
"Well, maybe individual doctors are not motivated by money, but our healthcare system should be. Research studies have shown consistently that money can motivate behavior change," she was convinced.
I was convinced, too. "Sure, money can change behaviors, but are they behaviors that we want?"
She had no answer.
*Of note, monetary incentives are used by many parties in the healthcare system, both private and public, at a variety of levels. Using PQRS as an example was not an attempt to target or comment on current government efforts on healthcare reform.
Saturday, February 8, 2014
Saturday, July 27, 2013
Dash and I
Dash was sweet, but feisty. He was polite, but always refused to give up. He was eighty, but he was lean, full of strength. I sat by his bed and watched, letting my heart break with every word.
"Bbbbut...I...dooon't...understand!" We came back to this sentence over and over, as I tried to comprehend the anger, the vibrant possibility contained within this husk of an extensive left hemiparesis. Everything I took for granted was monumental to Dash, every day since his third stroke put him in a nursing home. Every word was a marathon, every shower a hike over Mount Everest.
"Ttthhey...leeefft...me...heere...to...die!" Dash shouted in heart-wrenching fragments, and all I could offer was a touch on his right arm. I had nothing better, and it was humiliating. Dash was moved to the long-term care unit when he could not make enough progress to go home. We took care of him, because his family would not. Dash would die here - I could not have put it better myself.
Dash was a fighter, and he was ready. He would concede anything to get better, to regain function, to go home. Everyday I saw him he would ask why the physical therapists no longer came by, why no one gave him a chance to leave. I would tell him that Medicare would not pay, because this husk, on this generic, impersonal hospital bed, was the new Dash, was all that Dash would ever be now. It was the truth, and the truth was awful. I had no answer for him, so I sat there, sad and defeated, holding his right hand. I tried to understand what it was like, to lie in this bed as a prisoner, to lose the basic independence of showering without someone staring at you, and I couldn't. I wish no human being had to, but here we are, Dash and I, holding each other's hands, a pair among millions of elderly residents in nursing homes and their doctors.
Dash looked away, a tear dropped on his pillow, and my heart broke. I wanted to help Dash, help him cope with this new life, but I had no right. Dash had to take this journey on his own, this path to acceptance, because no one should have the audacity to say this is OK, other than Dash. Until then, I held his right hand, and Dash squeezed back.
"Bbbbut...I...dooon't...understand!" We came back to this sentence over and over, as I tried to comprehend the anger, the vibrant possibility contained within this husk of an extensive left hemiparesis. Everything I took for granted was monumental to Dash, every day since his third stroke put him in a nursing home. Every word was a marathon, every shower a hike over Mount Everest.
"Ttthhey...leeefft...me...heere...to...die!" Dash shouted in heart-wrenching fragments, and all I could offer was a touch on his right arm. I had nothing better, and it was humiliating. Dash was moved to the long-term care unit when he could not make enough progress to go home. We took care of him, because his family would not. Dash would die here - I could not have put it better myself.
Dash was a fighter, and he was ready. He would concede anything to get better, to regain function, to go home. Everyday I saw him he would ask why the physical therapists no longer came by, why no one gave him a chance to leave. I would tell him that Medicare would not pay, because this husk, on this generic, impersonal hospital bed, was the new Dash, was all that Dash would ever be now. It was the truth, and the truth was awful. I had no answer for him, so I sat there, sad and defeated, holding his right hand. I tried to understand what it was like, to lie in this bed as a prisoner, to lose the basic independence of showering without someone staring at you, and I couldn't. I wish no human being had to, but here we are, Dash and I, holding each other's hands, a pair among millions of elderly residents in nursing homes and their doctors.
Dash looked away, a tear dropped on his pillow, and my heart broke. I wanted to help Dash, help him cope with this new life, but I had no right. Dash had to take this journey on his own, this path to acceptance, because no one should have the audacity to say this is OK, other than Dash. Until then, I held his right hand, and Dash squeezed back.
Saturday, May 4, 2013
Learning to be a Caregiver in the Midst of Hardship
I am honored to post a story from Cameron, a reader who would like to share his experience taking care of loved ones with difficult medical conditions, which is becoming more common for all of us - elderly parents, children with cancer, relatives with addiction. Please share your experiences or leave questions for Cameron in the comment section.
Learning to be a Caregiver in the Midst of
Hardship
November of 2005 found my wife, Heather, and I confronted with the worst news of our lives. This news came at a time when we were just enjoying being brand new parents to our lovely three-month-old daughter, Lily. But on the fated day of November 21st, Heather was diagnosed with malignant pleural mesothelioma. When we received the diagnosis we were in shock at what we would do next. As I felt my life begin to rapidly change in front of me, I knew immediately that I had to take on the role of caregiver to ensure that my wife received everything she needed to fight the disease.
We had three choices for Heather’s treatment, one of which included going to an experienced doctor who specialized in mesothelioma in Boston. This doctor’s name was Doctor Sugarbaker, and while we also had other options that were closer to home, we chose Doctor Sugarbaker due to the extensive experience he had with this particular type of disease. I knew that in order to survive this, my wife would need the best care possible.
After going into caregiver mode and deciding upon a treatment plan for Heather, I started having occasions where I felt overwhelmed with the disease we faced and the overload of my schedule. One time, I simply collapsed and cried on the kitchen floor, afraid of what the future might bring. I could only picture the worst case scenario, Heather passing away and leaving me to raise our daughter on my own. However, even with these moments of weakness I never let Heather see my fears. I knew she needed me to be strong, no matter what I was going through on the inside.
Being a caregiver is not an easy task, especially when you are providing nearly round-the-clock care for someone you love. One piece of advice I have for anyone who is faced with being a caregiver is to accept help when it is offered. I really do not know how Heather and I would have made it through her ordeal if it had not been for the loving and supportive help of her parents and many other people in our community.
November of 2005 found my wife, Heather, and I confronted with the worst news of our lives. This news came at a time when we were just enjoying being brand new parents to our lovely three-month-old daughter, Lily. But on the fated day of November 21st, Heather was diagnosed with malignant pleural mesothelioma. When we received the diagnosis we were in shock at what we would do next. As I felt my life begin to rapidly change in front of me, I knew immediately that I had to take on the role of caregiver to ensure that my wife received everything she needed to fight the disease.
We had three choices for Heather’s treatment, one of which included going to an experienced doctor who specialized in mesothelioma in Boston. This doctor’s name was Doctor Sugarbaker, and while we also had other options that were closer to home, we chose Doctor Sugarbaker due to the extensive experience he had with this particular type of disease. I knew that in order to survive this, my wife would need the best care possible.
After going into caregiver mode and deciding upon a treatment plan for Heather, I started having occasions where I felt overwhelmed with the disease we faced and the overload of my schedule. One time, I simply collapsed and cried on the kitchen floor, afraid of what the future might bring. I could only picture the worst case scenario, Heather passing away and leaving me to raise our daughter on my own. However, even with these moments of weakness I never let Heather see my fears. I knew she needed me to be strong, no matter what I was going through on the inside.
Being a caregiver is not an easy task, especially when you are providing nearly round-the-clock care for someone you love. One piece of advice I have for anyone who is faced with being a caregiver is to accept help when it is offered. I really do not know how Heather and I would have made it through her ordeal if it had not been for the loving and supportive help of her parents and many other people in our community.
Over the following
months, Heather would undergo difficult treatment, involving mesothelioma
chemotherapy, surgery, and radiation.
Despite the odds against her, she eventually came through her treatment
cancer free, and remains so to this day, over seven years after her diagnosis.
I am so thankful that my
wife will be okay, and our lives are in the process of returning to normal and
getting back on a productive track. Providing non-stop care for Heather
taught me many things. I learned the importance of finding balance and
maintaining priorities at all time. We now hope that by sharing some of
our experiences, we can help others currently battling through their own cancer
journeys today.
Wednesday, January 9, 2013
How to Train Your Doctors
Back in the day, legend has it that when space programs were just developed, NASA soon discovered that ball-point pens will not write in zero-gravity. Unfazed, NASA spent a large amount of money developing pens that will work in space, while the Russians simply used pencils.
It turns out that this legend is only half true(1), but the lesson remains - sometimes, we get bogged down trying to solve a problem within its existing framework. Sometimes, it's better to wipe the slate clean and start from scratch.
The problem I propose is residency, how our future doctors are trained. Imagine a shearing shed. On one end stands a line of plump, happy, fluffy sheep - metaphorically these are bright-eyed medical students, healthy, well-rested from the last year of light coursework in medical school, excited to finally be at the forefront of medical care. After 3 or more years in the residency, the shearing shed spits out a scrawny, shivering ghost of a bald sheep - these are your doctors. They are burnt out, fatigued, unhealthy graduating medical residents usually without the same self-esteem, optimism or hunger for knowledge they used to have. This generalization has truth in it - poems(2), books(3), other forms of media(4) have tried to describe this gruesome experience. I, for one, have never heard anyone said that they would want to do residency for the rest of their life, as a real job, because they love it so much and they never want to quit.
Maybe that is too much to ask - not every job in the world creates that kind of enthusiasm. But, considering the importance of the task at hand, should we not attempt to train doctors in a way that by the end, the sheep remain plump, happy, fluffy and, most importantly, medically smarter than before the shearing?
I propose that we build this alternative training program from scratch, so we can dream bigger without the constraints in the current system of what can and cannot be. My proposal assumes happy, fluffy sheep - meaning caring, upstanding medical students looking to learn real medicine so that they can provide the best care for patients on the job - this is not always true but that's the topic for another day. With that assumption, a better training program will have the following characteristics:
1. Autonomy: Learners should be able to dictate the content and the manner in which they want to learn medicine.
1.1 Content: Not every medical student wants to be a pulmonologist, so why does every medical resident in the same program need to do the same amount of ICU time? Learners should tailor the type and duration of rotations to fit their career goals.
1.2 Manner: How many current residents, laboring in the trenches, work with ACGME on work hour regulations? I am going to tempt fate here and guess zero, or at least a very small minority if that, because there simply is not enough time in the day. So why are people sitting in an office far removed from residency deciding when a bunch of grown-up adults should take a nap, go home, come to work? Shouldn't 25-something future doctors know when they're at their best learning and when they need to take a break? If your future doctors need to rely on someone else to manage their work day, would you really want them to be your doctor, especially out after training when there is no one and nothing telling them when to take a nap, go home, come to work? The new work hour regulation is really misguided and quite a shame, because being able to follow patient progression over a 28-hour call is priceless - I wrote more about work hour regulations here.
2. Service vs Education: there is a time for service in every doctor's life, but residency should not be one of them. Medical students may have as little as 1 year to learn *everything* they need to know to be able to treat you on their own without supervision. None of that time should be spent learning the computer system or filling out paperwork, because many people can fill out paperwork without spending 4 years in medical school - it is low-yield. Progressive medical clinics hire scribes to write notes, enter orders, fill out paperwork, so doctors can focus on patients, look at them during conversation and treat them like respectable human beings. The diversity of cases is also important, which is why many reputable programs have medical admitting residents scouting for cases with educational values. There will be time to take care of patients admitted for pain control or alcohol withdrawal in the real world, but if a full-fledged doctor has never seen a case of pituitary adenoma during their training, would you trust him/her to care for you if you have one?
3. Evaluation: To become a full-fledged doctor, which is the goal of residency, you only need to spend a certain amount of time among a number of required rotations, and pass a multiple choice test. Failing other types of evaluations beyond these do not necessarily stop one from becoming a doctor. Other qualitative evaluations are performed mostly by doctors, a few by nurses, none (in my program) by patients, which seems backwards to me. It is important to know what your colleagues think, but isn't it more valuable to see if your customers are satisfied? I don't know of other thriving service industry where close to 0% of evaluations come from customers.
4. Equality: Residency is a monopoly, where medical students cannot become doctors without going through it. As a result, residents usually get the short end of the stick in everything that they do: slower computers, fewer medical assistants, more rectal exams. Being treated as a second class citizen should never be a rite of passage. Equality means respect, and the hidden curriculum in residency currently teaches us that it is acceptable to treat those with less experience without respect.
5. Add yours here. Wipe the slate clean and dream about how you want to make your doctors. One day, someone might actually listen and make your dreams come true.
5. Add yours here. Wipe the slate clean and dream about how you want to make your doctors. One day, someone might actually listen and make your dreams come true.
(1) http://en.wikipedia.org/wiki/Space_Pen
(2) Farrago, Douglas. "Stages of the physician." The Placebo Chronicles. New York: Broadway Books, 2005. 5.
(3) Not the least of which is the infamous House of God, written by psychiatrist Stephen Bergman
(4) http://www.youtube.com/watch?v=VUd-JMPhgK4
Sunday, August 26, 2012
The only thing I had to do was to help Jerry and I failed
I have failed Jerry, and now I'm replaying every word I ever said in my head, over and over, the whole exercise consuming my being.
Jerry was not old. He just turned sixty, a good few decades of retirement awaiting him. Then, he was diagnosed with stage 4 esophageal cancer. It seemed that he had spent his entire life working up to that moment, only to be stolen away unjustly, by a cancer that drowned him slowly in his own oral secretions. Jerry had been in the hospital for months, battling recurrent aspiration pneumonia that caused nasty sepsis. He frequented the intensive care unit, had a feeding tube placed along with a stent in his esophagus to remedy a fistula to his trachea, a communication caused by a large tumor burden in his chest.
I met Jerry the day before he died. Jerry was in bed under a tangle of wires, breathing quickly, gasping for air with every available muscle in his chest. He was distressed, decompensating from another ravaging aspiration pneumonia, blood pressure non-existent. I was supposed to help Jerry, as a responder from the intensive care unit. The only thing I had to do was to help Jerry and I failed.
I asked for labs and a stat chest X-ray. I was told by his inpatient doctor that Jerry was full code, meaning Jerry wanted anything and everything done, including a tube down his throat and compressions that would break his ribs, interventions that were becoming more and more realistic for Jerry. I waded through a throng of nurses poking for veins and grabbed his hand. I asked for his wishes, again, wanting to make sure I knew what he wanted for himself. I asked Jerry if he would want to be intubated - he shook his head and said no, with the perplexity of a schoolboy who was offered a rotten piece of Jello that he had already refused. Jerry seemed to have given extensive thought to this piece of Jello, and after multiple rounds decided that he would not want Jello for himself.
Still, I was not sure if Jerry was thinking clearly in his severe illness. I asked if he would want his wife to make decisions for him, seeing that Jerry was already working so hard to keep himself oxygenated. He nodded, with immense fatigue, then went back to focus on his breathing, his staying alive. I found his wife, crying and beside herself. I felt cruel when I asked her what Jerry would have wanted - what a burden I placed on her. The word unfair was an understatement. How can she agree to the tube if Jerry hates it? How can she refuse the tube if it's the only thing that will keep the love of her life breathing longer?
She produced a piece of paper - Jerry's living will. It said that Jerry did not want artificial respiration, cardiopulmonary resuscitation, artificial nutrition that would prolong his life. It said so in capital letters. The last sentence read, "these decisions are made when I am sound of mind." He signed it on February 20, 2012 - 6 months ago.
I was relieved. I thanked Jerry he made a living will. I could guide Jerry's wife through this difficult process, having an idea of what he wanted. I was angry. If Jerry coded before I found this piece of paper, I would have done everything that Jerry did not want. The covering inpatient doctor did not know why his living will was not found or discussed on admission.
Jerry's wife was broken, in despair. Her daughter asked her to keep Jerry alive while rushing in to the hospital. She pulled at her hair. She heavily sobbed. She begged me, begged the world and Jerry, not to make her choose. I sat her on a chair, hoping to provide some comfort, and told her that we would not intubate or perform chest compressions on Jerry - the medical team changed his code status to DNR/DNI. Luckily, even though Jerry was breathing quickly, his oxygen saturation was holding. For now an optimist could hope that Jerry would not require intubation. Jerry did not discuss pressors on his living will - most people do not. Pressors would keep Jerry's blood pressure up in the setting of sepsis, but a central line required to administer pressors is poked through the neck, a procedure with its own set of risks and discomfort. I talked to Jerry, his wife talked to Jerry, and we agreed that Jerry wanted pressors. Jerry came with me to the intensive care unit.
The next few hours was wrong, was when I failed Jerry. He maxed out on levophed, tiring out from tachypnea, secretions building up and drowning him. Jerry was actively dying. His daughter, now at bedside, asked about intubation. She said Jerry had been intubated before, despite his living will. I asked how, and she was not sure if the living will was discussed with his doctors then. I said I did not know where Jerry would land if he were intubated, avoiding projections with my limited experience, but I said there was a good chance that once placed, the tube would not be successfully removed. Jerry might be stuck on the ventilator - a horrible way to die for someone who specifically stated, when he was sound of mind, that he would not want to die on the tube. Jerry's wife agreed, while his daughter looked on, not saying a word, tired and holding her tongue. I told them my critical care attending was coming in - he could discuss intubation in more details with them.
By the time the attending stepped in, Jerry was out cold, no longer conscious but struggling to breathe all the same. Maybe out of experience, maybe out of comfort with aggressive medical care, maybe out of sympathy for his wife, imagining how heart-breaking it must be to watch her love drown, my attending offered intubation to the family. We can always back off, he said. It was the only tangible hope in a sea of despair and the family took it. I wondered if they took it for Jerry or for themselves, but who can fault family members, regardless of what they choose? His wife loved Jerry and wanted the best for him. She was deciding the only way she knew how, making earth-shattering choices for the first time in her life for Jerry, without Jerry.
The gamble did not pay off, for anyone. No one could know in a few hours Jerry would max out on 3 pressors, now with a breathing tube that did not do anything for him. Jerry was dead, had been dead long before the time when his heart would eventually stop. The Jerry that the world knew was dead. The-accomplished-pharmacist-who-regularly-hugs-his-wife-Jerry had left the world. The body on the hospital bed accepted breaths initiated by the ventilator, but once his heart and lungs finally gave out, chest compressions and electrical shock would not fix the sepsis within. Jerry would eventually die. He could not be saved.
And I have failed. I failed to save Jerry from the breathing tube, even though he told me clearly what to do. I failed to save his wife from the guilt that she may ruminate on, increasingly over time, wondering if she made the right choice for Jerry, and there would be no resolutions to that doubt because we would never know what happened if Jerry was not intubated. My only hope for her was that Jerry would know every decision was made out of love, that there was no blame, that he understood and loved her all the same. In the end the sepsis overwhelmed Jerry and there were no more pressors to give. The breathing tube was never withdrawn.
Jerry was not old. He just turned sixty, a good few decades of retirement awaiting him. Then, he was diagnosed with stage 4 esophageal cancer. It seemed that he had spent his entire life working up to that moment, only to be stolen away unjustly, by a cancer that drowned him slowly in his own oral secretions. Jerry had been in the hospital for months, battling recurrent aspiration pneumonia that caused nasty sepsis. He frequented the intensive care unit, had a feeding tube placed along with a stent in his esophagus to remedy a fistula to his trachea, a communication caused by a large tumor burden in his chest.
I met Jerry the day before he died. Jerry was in bed under a tangle of wires, breathing quickly, gasping for air with every available muscle in his chest. He was distressed, decompensating from another ravaging aspiration pneumonia, blood pressure non-existent. I was supposed to help Jerry, as a responder from the intensive care unit. The only thing I had to do was to help Jerry and I failed.
I asked for labs and a stat chest X-ray. I was told by his inpatient doctor that Jerry was full code, meaning Jerry wanted anything and everything done, including a tube down his throat and compressions that would break his ribs, interventions that were becoming more and more realistic for Jerry. I waded through a throng of nurses poking for veins and grabbed his hand. I asked for his wishes, again, wanting to make sure I knew what he wanted for himself. I asked Jerry if he would want to be intubated - he shook his head and said no, with the perplexity of a schoolboy who was offered a rotten piece of Jello that he had already refused. Jerry seemed to have given extensive thought to this piece of Jello, and after multiple rounds decided that he would not want Jello for himself.
Still, I was not sure if Jerry was thinking clearly in his severe illness. I asked if he would want his wife to make decisions for him, seeing that Jerry was already working so hard to keep himself oxygenated. He nodded, with immense fatigue, then went back to focus on his breathing, his staying alive. I found his wife, crying and beside herself. I felt cruel when I asked her what Jerry would have wanted - what a burden I placed on her. The word unfair was an understatement. How can she agree to the tube if Jerry hates it? How can she refuse the tube if it's the only thing that will keep the love of her life breathing longer?
She produced a piece of paper - Jerry's living will. It said that Jerry did not want artificial respiration, cardiopulmonary resuscitation, artificial nutrition that would prolong his life. It said so in capital letters. The last sentence read, "these decisions are made when I am sound of mind." He signed it on February 20, 2012 - 6 months ago.
I was relieved. I thanked Jerry he made a living will. I could guide Jerry's wife through this difficult process, having an idea of what he wanted. I was angry. If Jerry coded before I found this piece of paper, I would have done everything that Jerry did not want. The covering inpatient doctor did not know why his living will was not found or discussed on admission.
Jerry's wife was broken, in despair. Her daughter asked her to keep Jerry alive while rushing in to the hospital. She pulled at her hair. She heavily sobbed. She begged me, begged the world and Jerry, not to make her choose. I sat her on a chair, hoping to provide some comfort, and told her that we would not intubate or perform chest compressions on Jerry - the medical team changed his code status to DNR/DNI. Luckily, even though Jerry was breathing quickly, his oxygen saturation was holding. For now an optimist could hope that Jerry would not require intubation. Jerry did not discuss pressors on his living will - most people do not. Pressors would keep Jerry's blood pressure up in the setting of sepsis, but a central line required to administer pressors is poked through the neck, a procedure with its own set of risks and discomfort. I talked to Jerry, his wife talked to Jerry, and we agreed that Jerry wanted pressors. Jerry came with me to the intensive care unit.
The next few hours was wrong, was when I failed Jerry. He maxed out on levophed, tiring out from tachypnea, secretions building up and drowning him. Jerry was actively dying. His daughter, now at bedside, asked about intubation. She said Jerry had been intubated before, despite his living will. I asked how, and she was not sure if the living will was discussed with his doctors then. I said I did not know where Jerry would land if he were intubated, avoiding projections with my limited experience, but I said there was a good chance that once placed, the tube would not be successfully removed. Jerry might be stuck on the ventilator - a horrible way to die for someone who specifically stated, when he was sound of mind, that he would not want to die on the tube. Jerry's wife agreed, while his daughter looked on, not saying a word, tired and holding her tongue. I told them my critical care attending was coming in - he could discuss intubation in more details with them.
By the time the attending stepped in, Jerry was out cold, no longer conscious but struggling to breathe all the same. Maybe out of experience, maybe out of comfort with aggressive medical care, maybe out of sympathy for his wife, imagining how heart-breaking it must be to watch her love drown, my attending offered intubation to the family. We can always back off, he said. It was the only tangible hope in a sea of despair and the family took it. I wondered if they took it for Jerry or for themselves, but who can fault family members, regardless of what they choose? His wife loved Jerry and wanted the best for him. She was deciding the only way she knew how, making earth-shattering choices for the first time in her life for Jerry, without Jerry.
The gamble did not pay off, for anyone. No one could know in a few hours Jerry would max out on 3 pressors, now with a breathing tube that did not do anything for him. Jerry was dead, had been dead long before the time when his heart would eventually stop. The Jerry that the world knew was dead. The-accomplished-pharmacist-who-regularly-hugs-his-wife-Jerry had left the world. The body on the hospital bed accepted breaths initiated by the ventilator, but once his heart and lungs finally gave out, chest compressions and electrical shock would not fix the sepsis within. Jerry would eventually die. He could not be saved.
And I have failed. I failed to save Jerry from the breathing tube, even though he told me clearly what to do. I failed to save his wife from the guilt that she may ruminate on, increasingly over time, wondering if she made the right choice for Jerry, and there would be no resolutions to that doubt because we would never know what happened if Jerry was not intubated. My only hope for her was that Jerry would know every decision was made out of love, that there was no blame, that he understood and loved her all the same. In the end the sepsis overwhelmed Jerry and there were no more pressors to give. The breathing tube was never withdrawn.
Wednesday, August 22, 2012
How We Die
It was another day in the intensive care unit. The night was clean and calm, ventilators beeping their expected melody, and the laborers of medicine went about their night shifts uneventfully, including me sitting with the obnoxious admission pager attached to my hip. The smoothness of it all shattered when the beeper started screaming - I picked up the phone and soon the emergency room physician was on the line.
"We have an old lady with potential sepsis for you - fluids are going right now," the voice said.
"What's her blood pressure?" I asked reflexively.
"80/50 and still unstable - you should come see her soon," the urgency in that voice was unmistakable.
I scoured the patient's information quickly from the chart before heading to the emergency room, as I usually do, and registered a repeated past medical history of an abdominal aneurysm that had never been fixed. Her name was Dorothy, a name that is endearing today and would have been very fashionable in the 1920's. Dorothy lived in a nursing home for the past few years, with multiple hospital admissions becoming increasingly frequent in the recent months. Her stage 4 pressure ulcer was unrelenting, undermined by severe malnutrition demonstrated by an albumin level of 1.5. Her white blood cell count was not elevated, but infected older patients do not always present with leukocytosis. From the chart I braced myself for the harsh reality I was about to encounter, knowing her chance of leaving the hospital alive was poor, and with a heavy heart went to find Dorothy.
I pulled the curtain aside as I stepped into the room and the commotion around Dorothy was jarring. The monitor was unhappy with a blood pressure of 80/50 and it made its discontent known, loudly. Nurses ran in and out, starting new intravenous access, hanging more fluids, everyone fumbling all around except Dorothy. She was in a hospital gown but the blanket had fallen by the bedside, revealing her lower naked half with a foley bag lying nearby, draining not a drop of urine. Her arms and legs were skin on bones, her face gaunt with wispy hair, all combined to make her the life-sized version of a skeletal crypt keeper from horror movies, except the only horror in that moment was in Dorothy's eyes, staring blankly at the ceiling. She was agitated, scared perhaps, confused most certainly, her arms flailing wildly for something invisible that may save her life. She moaned, yelped, then screamed a cacophony of unsettling fear and panic. I grabbed her grasping hands and soothed her, uttering something vague like it's OK - not so much to say that life was there to stay but more to acknowledge that it was perfectly normal, expected even, to be scared. I searched for a family member, someone more adept at calming Dorothy than me, but I found no one.
Then something horrible happened. Dorothy's blood pressure started plummeting right in front of our eyes, systolic down to 70, then to 50, blood surely pouring out of her aorta into abdominal compartments. It became clear that her aneurysm had ruptured, catastrophically, life literally seeping out into her abdomen. The family, informed prior of what believed to be sepsis in Dorothy, mistakenly thought that they would have time to come visit her in the morning. They were promptly called again, this time notified that Dorothy was actively dying, a surgical repair of her aneurysm unlikely to be successful considering her frail baseline. Everyone was thankful that her family decided to stop all interventions knowing they were futile. Her son said he was rushing in then hung up the phone.
But Dorothy was already dying - I knew none of her family members would make it in time. I looked at Dorothy, left in the wake of the ravenous medical efforts aiming at postponing death, and there was not an ounce of dignity left in her being. Her gown was pulled aside, revealing a stomach dirtied with gel used for the bedside ultrasound. The foley hung lifeless between her bent legs, IV kits and needles strewn around like candy wrappings, wires attached to EKG leads tethering her soul. Dorothy was no longer flailing, her body now without the necessary blood to fuel the bodily expression of the fear within. I picked up her left hand and held it, making a mental note to stop in that moment for Dorothy and witness her death, in an attempt to add what little dignity I could to this horrible chain of events. My intern looked at me, then proceeded to hold Dorothy's other hand. Everyone else, the emergency room physicians and nurses, moved on out of necessity to other sick patients, all but one who returned with clean sheets to cover Dorothy, hopefully leaving her presentable to family members.
As Dorothy's heart slowed down and I held her lifeless hand, I could not recall a more horrible death other than a trauma case in medical school, a 12-year-old girl crushed by a school bus bleeding out every orifice. No one can predict death, but looking at Dorothy's chart one would guess that death was near - odds are that a malnutritious, demented, immobile body ravaged by stage 4 pressure ulcers would not survive increasingly frequent hospital admissions. I wondered if anyone ever mentioned to Dorothy or her family members that death was coming, that they should prepare for it, sooner rather than later.
Sometimes fear of death is so blinding that we forget to think about how we want to die. Other than certain suicides, we have no control over when we die, even though postponing the moment of death is what medical care is focused on. The only aspect of death we mortals could dictate, given enough thought and preparation, is how death will take us. The spectrum ranges from Dorothy to a peaceful death at home surrounded by love and familiarity, expected and prepared for. I remember reading a survey reporting that most people wish to die at home, although in reality only the minority of people do. I wonder if it is because we become so afraid and occupied, speculating how to fend off death, that we forget death is certain, a natural twin of life, something that can only be fended off for so long. I wonder if people know that hospitals are a horrible place, that once you enter it can be difficult to leave through the front door. I wonder if people know that Do Not Hospitalize is an option. I wonder if people know how to plan for death at home - I certainly do not. Of all the wishes in our lives, the wish for how we die seems as important as any, something to plan for deliberately and carefully.
The line on the monitor went flat and still Dorothy was alone, two strangers holding her hands. The nurse stared at me expectantly - I pronounced the time of death as she left to gather paperwork. I wanted to stay and find out where people go after they die in the hospital. Who pick up the body? Are they put in a body bag? Where is the morgue? I wonder if other doctors know the answers - patients stop being ours once they are dead, even though they remain as human as ever - before and after, especially during death. How we die should never be taken lightly.
Sunday, March 18, 2012
If people want to die, heroic measures won't get in their way
I was working in the Intensive Care Unit (ICU) the other day and as I counted, I found that more than half of the patients there, for lack of a better term, brought the condition upon themselves.
I sound harsh, but there was no better way to put it. I was taking care of Mrs. B, a 60-year-old lady with COPD who called EMS for shortness of breath. As EMS readied to take her to the hospital, she said, "you all are gonna have to wait until I finish my cigarette." She has been intubated many times for COPD exacerbation, visited the ICU a hundred more times. She said if she got out, the first thing she would do would be to smoke a cigarette, but she did not believe she would make it this time. After multiple weeks on continuous BIPAP with spurts of intubations in between, she told us to quit and let her die.
Looking around the ICU that day, there were multiple stories like her - a cirrhotic who was actively drinking despite his varices bleeding to death after 30 units of various blood products that turned out to be futile, a 20-year-old diabetic with recurrent admission for diabetic ketoacidosis who left against medical advice the minute he found out he would not get any intravenous dilaudid, a gentleman admitted with pulmonary edema every 3 days because he refused to go to dialysis.
As days passed, I realized that these patients were common - I was being trained to undo what these people did to themselves, so that they can leave the hospital to do it some more. Some has hurt themselves so many times it could not be undone, despite many resources wasted and much money spent. I watched 30 units of blood passed through one end of our patient only to flow right out another, and I wondered if there was not someone else out there who would not undo our efforts, our blood products, our precious resources.
More importantly, I wondered if we could ever draw a line, where we say enough is enough, where we say you do not get a second chance at life so that you can just kill yourself in the end, where we say there comes a point when heroic measures cannot cure how people want to live their lives. Before medical school I always thought that medicine was made to promote health, but in the light of reality I have learned that my job in the ICU today is really to prolong death, so that in the end people can crash and burn a bigger flame, taking much needed resources with them.
Mrs. B knew in her heart that smoking would be her death, yet smoking was the one thing she pined for. I wanted to tell Mrs. B that if she wanted to die, I was in no place to stop her. I might have had a shot as her primary care doctor before she picked up her first cigarette, but that time is long passed. In the end when the BIPAP came off, she became unconscious and passed away peacefully. I wanted to ask if we should have stopped sooner, maybe two intubations ago, but I will never know.
I sound harsh, but there was no better way to put it. I was taking care of Mrs. B, a 60-year-old lady with COPD who called EMS for shortness of breath. As EMS readied to take her to the hospital, she said, "you all are gonna have to wait until I finish my cigarette." She has been intubated many times for COPD exacerbation, visited the ICU a hundred more times. She said if she got out, the first thing she would do would be to smoke a cigarette, but she did not believe she would make it this time. After multiple weeks on continuous BIPAP with spurts of intubations in between, she told us to quit and let her die.
Looking around the ICU that day, there were multiple stories like her - a cirrhotic who was actively drinking despite his varices bleeding to death after 30 units of various blood products that turned out to be futile, a 20-year-old diabetic with recurrent admission for diabetic ketoacidosis who left against medical advice the minute he found out he would not get any intravenous dilaudid, a gentleman admitted with pulmonary edema every 3 days because he refused to go to dialysis.
As days passed, I realized that these patients were common - I was being trained to undo what these people did to themselves, so that they can leave the hospital to do it some more. Some has hurt themselves so many times it could not be undone, despite many resources wasted and much money spent. I watched 30 units of blood passed through one end of our patient only to flow right out another, and I wondered if there was not someone else out there who would not undo our efforts, our blood products, our precious resources.
More importantly, I wondered if we could ever draw a line, where we say enough is enough, where we say you do not get a second chance at life so that you can just kill yourself in the end, where we say there comes a point when heroic measures cannot cure how people want to live their lives. Before medical school I always thought that medicine was made to promote health, but in the light of reality I have learned that my job in the ICU today is really to prolong death, so that in the end people can crash and burn a bigger flame, taking much needed resources with them.
Mrs. B knew in her heart that smoking would be her death, yet smoking was the one thing she pined for. I wanted to tell Mrs. B that if she wanted to die, I was in no place to stop her. I might have had a shot as her primary care doctor before she picked up her first cigarette, but that time is long passed. In the end when the BIPAP came off, she became unconscious and passed away peacefully. I wanted to ask if we should have stopped sooner, maybe two intubations ago, but I will never know.
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