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.

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.

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.

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.

(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