Sep 11, 2009
But before I delve into the speech, I ought to introduce myself, as the newest contributor to the IHI Open School Blog. I’m a few months out of college and a few weeks into a one-year position here at IHI. My main interest in health care is about policy and politics, so my posts will follow the health care reform debate, as it relates to all of us who are working to improve the quality of the health care system and its delivery. Just as a note, I know my opinions can be rather assertive, so I want to be clear that I am writing for myself, as myself, not on behalf of IHI as an organization.
I’m starting from a few core assumptions. First, I assume health care is a human right. That means that any reform will be unacceptable to me if it does not achieve universal coverage. It also means that reform will be unacceptable if it leaves people “underinsured.” According to 2007 data from the Commonwealth Fund, about 25 million adult Americans are underinsured—their insurance fails to cover medical costs when tested by unforeseen diagnoses or accidents. Health insurance reform means making insurance more dependable, affordable, and transparent for all. Otherwise, health care is not a right but a luxury.
My second assumption is that government is not evil. Reform will go nowhere if any steps the government take are described as a Kafkaesque “government take-over.” Let’s be real, this is America…someone will always be there to make a profit from your pain. The reality is, government policy can change the incentives that doctors and hospitals face. The government can make it worth a doctor’s time to counsel patients on the medical decisions they must make. Government policy can reverse the perverse incentives that reward hospitals for expensive care. Most important, the government is the only publicly accountable body that can make such changes.
My third assumption is not really an assumption, but in fact a challenge to a commonly held one: that the free market is the answer to health care. A purely free market for health care would in fact be catastrophic. I’ll defer to Paul Krugman on this one (as I’m sure I’ll do on a lot of these posts):
There are two strongly distinctive aspects of health care. One is that you don’t know when or whether you’ll need care — but if you do, the care can be extremely expensive. The big bucks are in triple coronary bypass surgery, not routine visits to the doctor’s office; and very, very few people can afford to pay major medical costs out of pocket. This tells you right away that health care can’t be sold like bread. It must be largely paid for by some kind of insurance. And this in turn means that someone other than the patient ends up making decisions about what to buy…The second thing about health care is that it’s complicated, and you can’t rely on experience or comparison shopping. (“I hear they’ve got a real deal on stents over at St. Mary’s!”) (http://krugman.blogs.nytimes.com/2009/07/25/why-markets-cant-cure-healthcare/)
Getting back to the President’s speech, I really was very impressed that Obama rose to the challenge. He didn’t sound technocratic or boring, but he wasn’t vague or noncommittal on details either. He convinced me that the public option is not the crux of reform, and that it shouldn’t overshadow other critical consumer protections built into the law. He also chose some really great analogies to explain himself – I particularly liked how he said that a public option would provide greater choice and competition, just as public universities provide greater choice for and competition against private ones. You can read the full text here.
Some of the Republican’s reactions, though, absolutely disgusted me. I found myself screaming at the screen when Obama debunked the “death panels” lie, only for Republicans to remain seated as the rest of the audience jumped to its feet. It would have been consolation that their presence in the chamber was small--pushed to the back while Democrats took up more space than I’d ever seen--if I didn’t know that it was Democrats who have kept this reform from going forward in the past few months.
I loved the section to seniors, on Medicare: “So don't pay attention to those scary stories about how your benefits will be cut, especially since some of the same folks who are spreading these tall tales have fought against Medicare in the past and just this year supported a budget that would essentially have turned Medicare into a privatized voucher program. That will not happen on my watch. I will protect Medicare.” Another moment of uncomfortable Republican seatedness. And I loved the attempt to shame Congress for their inaction: “ We did not come to fear the future. We came here to shape it.”
Whether this speech can make a difference remains to be seen. I hope it can, and I’ll be watching closely to see.
Sep 8, 2009
However, this realization does not mean that I've never tried. The scars on my body are a road map to all of the ways that I have tried to figure out what lies beneath my skin. For example, I have a scar on my tongue from stapling it and messily extracting the staple on my own when I was six years old. My mom had just had surgery and I couldn't understand why she had staples across her belly. Weeks later, after I was told that doctors use instruments that look a little like kitchen knives to open and fix the body, I sliced my finger with the pizza cutter. Burning my cheek with my mom's curling iron not too long after the pizza cutter incident was the last straw. My parents very wisely remembered to add "don't try this" to any of their stories that could be interpreted as a new way to "test" something on myself. What I must have innately understood is that there is no better way to learn than to learn by doing.
With this dangerous streak of curiosity in me, I was surprised to find myself, 17 years later, walking with trepidation down the corridor towards the anatomy labs. The ultimate chance to learn was finally here. But, my steps had lost their usual spring (not just because my scrubs were too big) and rather than looking straight ahead, the scuff marks on the ground began to "fascinate" me. I couldn't contain myself when I thought about finally peeling away the skin to see how all of the different parts of our body worked together. Anatomy has a tangible tie to the practice of medicine, much more than sitting in a lecture hall learning about protein structure. So, what was I waiting for?
It wasn't the smell, the fear of cutting, becoming intimate with death, or even the overwhelming amount of material that was soon expected to become second nature to us. I was afraid of this gift: a complete stranger and her family have given me the opportunity to examine a body and know it far better than my own. The cadaver I was to spend the next few months with was not just going to be my teacher, but also my first patient. However, unlike my future patients, I will never know anything about her life except for what I can infer from her road map of scars. Her stories will remain a mystery. She has allowed me to crack open her spine, poke through her muscles, dig deep to find bundles of nerves--all things that she herself will never have the privilege of doing. Yet, her laugh, her voice, and the sparkle in her eyes are not even things that I can imagine and ascribe to her.
Perhaps it is this asymmetry of information that makes our relationship unique.While these missing pieces make it easier to objectively and academically canvass her body and focus on the science of the human body, I find myself inserting a piece of me into every gap of knowledge. For every incision I make and for every intricacy I am able to uncover, I am mentally making the same incision and discovery in myself. Her spinous processes are now also my spinous processes. Even though I have the exhilarating chance to remove each piece and uncover the delicate spinal cord, I must respect and care for each piece as if it were my own. I do my best to be attentive just in case I'm lucky enough to illuminate a precious pearl about her life.
After understanding and appreciating this special relationship with my first patient, I walk into anatomy lab with a sense of humbleness to accompany my geeky excitement. In anatomy, we are learning by doing. We are learning and practicing how to listen and learn from our patients by doing just that.
There really is no better way to learn.
My name is Jaclyn and I have been a lifelong resident of Connecticut and I’m a parent raising a special needs child. My daughter was born prematurely at UCONN Medical. In October 2003 my daughter was diagnosed with Cerebral Palsy and is currently wheelchair bound. For me, January 14th 2009 makes 6 years of being unemployed.
My daughter is totally dependent on me to carry her up and down the stairs for her baths and to be put to bed and to get her ready for school and other activities. She attends kindergarten and being that I don’t have ramps at either front or back doors, I have to roll her down the steps to get her on the bus. Her movements are so sporadic, I often will have random bruises such as a swollen lip from her hitting me in my face. I use to receive home health aid assistance 40 hrs a week and those were cut to 10 hrs a week, which is not efficient help for me caring for her. I don’t have any choices but to financially depend on state assistance and the disability I collect for my daughter. Although, under valid circumstances, I often feel degraded by the DSS workers. I have called nearly every daycare center/childcare provider in and around my town only to be told my daughter doesn’t qualify for daycare because she is a liability, she’s not potty trained or there is no qualified staff to take care of children like mine. I have called the senator who services my district, the mayor, the board of education, the United Way and spoke with the principle at her school to ask for help in finding a qualified daycare that will accept her. Those leads did not pan out and I finally given up when a coordinator at 211 info line explained to me that Connecticut doesn’t have daycares for special needs children.
I never wanted to quit my job but it was a disheartening sacrifice I had to make. If it were possible for me to work, I wouldn’t have anyone to place her on the bus or have anyone to receive her after school. The easy part is to go to work during the hours she is in school but quite often the school calls me to come pick her up because she may have had an accident or she’s not feeling well enough to stay. I also have to consider weather delays, shut downs, early dismissals and even her summer vacation.
Bottom line, I have virtually no assistance for my daughter or myself. My mother is the only one who will pitch in when she can but she is 64 years old and still working for herself. Placing my daughter in a group home would literally kill me. I love her more than I love myself and will fight and sacrifice for her till my last day.