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Confessions of a Curious Mind

It's time for some change!

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Lauren

It's time for some change!

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This is probably one of the most important entries I have ever written. Please if you can, read this although its long. It will effect ALL of us at some point.

This has been an unbelievable summer for me. Unbelievable in the rollercoaster fashion that I have come to expect in my life. I finished my summer fellowship at the cancer center last Friday. There were a lot of ups and downs throughout the 10 weeks I spent working full time there. It was emotionally draining and taxing. It uncovered my many clinical weaknesses in therapy that I have to continue to work hard at to overcome. But more than anything, the patients I met this summer taught me more than just clinical skills. In working with the dying, I feel like they truly taught me how to live. I'm eternally grateful for that. Because with palliative and end-of-life care, that is what we are talking about. Living...in all its infinite forms. I work with dozens of interdisciplinary team members at the hospital and we work hard to ensure that when it comes to end-of-life care, we are helping people to live. To live the time they have left the way THEY want to live it.

Nonetheless, during this very time came the national out-cries of Sarah Palin's "Death panels" and arguments that Obama is trying to tell "your grandma how to die." I can't begin to describe how heartbreaking watching this health care debate has been for me not only from my personal experience but from my newfound professional experience in end-of-life care. Obama's team had put together a health care plan that could change the course of not just our nation's health, but also our economy. I think the media and conservatives have done a good job muddy-ing up the facts of the plan. If you have time, please PLEASE read this very concise and factual overview of the health care plan from the White House that was emailed to me, please take a few minutes to read it: Health Care Reform Facts

Ten years ago my mom was diagnosed with uterine cancer and had no insurance (we were all denied because of family history and prior diagnoses). She was forced to go to a teaching hospital that treated her poorly. They tried to work out a payment plan for her. The cost of her life-saving surgery to remove her uterus? $25,000. That was just for the surgery. No other treatment. And she had two kids to continue raising, and debt from my dad's own treatment. Until this day, my mom has not been able to pay off her medical bills. How can a waitress making less that $17,000 a year possibly pay off a bill like that?

But I have also seen so many cases this summer of doctors who did not have time to talk to patients about end-of-life care. I watched children, spouses and other loved ones who were COMPLETELY HELPLESS because they never had that kind of conversation with the patient or medical team. There were several moments like this. In one case early on in my summer, a patient and her family never discussed what is called the "Advance Directive." Lately in the media that has been dubbed as a "death sentence" forcing you to "pull the plug" on your loved one. Quite the contrary, the advance directive allows patients to ENSURE that their wishes are honored. They can be as specific or vague as one wants it to be simply by writing out scenarios in which a patient would or would not want a procedure done. In its most basic form there is the "Do not resuscitate (DNR)" and "do no intubate (DNI)" orders. This means no extra measures of CPR/shock to the heart or no tubes for breathing. DESPITE WHAT CONSERVATIVE MEDIA ARE STATING, YOU CAN WRITE WHEN YOU WANT TO BE DNR OR DNI AND WHEN YOU DON'T WANT TO. You can make it whatever you want. But having the conversation with your doctors and family is important because if you are at end-stage disease and you become unable to speak for yourself, if your family does not know your wishes it leaves them in agony and turmoil. In this one case, because there was no advance directive discussed and documented on paper (this is important, even if you write it yourself, in most states there just needs to be some type of letter stating wishes) then doctors have no choice but to resuscitate. Often this is brutal and invasive to an already weakened body. Especially if already given a terminal diagnosis. This daughter I met with didn't know what to do when her mom starting to crash. So she let the doctors attempt to save her. But as she watched and saw the machines and the brute force of cpr breaking her mom's ribs, she screamed for them to stop. The patient ended up dying 5 minutes later. Did her last moments really have to be like that? If doctors were allowed to spend time and be able to charge insurance for this type of counseling, moments like these would be far less frequent. It would also save time and money for unnecessary procedures that in the end are not going to save someone. ER procedures such as that cost tens of thousands of dollars where as pain control can be done for a couple hundred in most cases.

That's what this "end of life" provision Obama proposed was for. Not to tell you how to die but allow for a thorough and thoughtful conversation about one's wishes with your doctor and medical team. It is a personal insult when I read and hear that end-of-life care is about the medical team taking away people's freedom to choose. If anything we are trying to be supportive and give patients and family TIME to think about it before it is too late!!!! Allowing doctors to have this time with patients provides more comprehensive care. As it stands, doctors specializing in end of life care often can only get paid for talking about pain control as opposed to the larger picture of advance directives and a patient's goals for living in the remaining time left.

Another example from this summer was when I met a wife and daughter whose husband died on the floor. She had no idea what he wishes were because they never talked about it. She looked at me as we sat next to his body and said, "I have been married to him for 49 years, but I have no idea what he wanted. I don't know whether to bury him or cremate him. We never talked about it. I don't know what to do." And she sobbed. This is what I see more often than not. This isn't just some structured email. This is Lauren. And I'm telling you from this experience real stories of what happens with lack of end-of-life care planning. And these, are some of the less horrible accounts. So when it comes up in conversation share these stories and facts. Or if you have TWO minutes to support the health care reform measures you can go online and sign the white house petition at http://www.healthreform.gov/support.html. I know I focused on one sliver of the reform plan, but the entire agenda will save lives and tons of money from a medical system that is crumbling and spilling billions of dollars of debt into our economy.

I'm not a particularly religious person, but this passage from a Martin Luther King Jr. speech has always meant a lot to me and I feel has new meaning and vibrance today in the 21st century:
"But I wouldn't stop there. Strangely enough, I would turn to the Almighty, and say, 'If you allow me to live just a few years in the second half of the twentieth century, I will be happy.' Now that's a strange statement to make, because the world is all messed up. The nation is sick. Trouble is in the land. Confusion all around. That's a strange statement. But I know, somehow, that only when it is dark enough, can you see the stars. And I see God working in this period of the twentieth century in a away that men, in some strange way, are responding — something is happening in our world. The masses of people are rising up. And wherever they are assembled today, whether they are in Johannesburg, South Africa; Nairobi, Kenya; Accra, Ghana; New York City; Atlanta, Georgia; Jackson, Mississippi; or Memphis, Tennessee — the cry is always the same — 'We want to be free.'"

This is the time to continue our fight for freedom- no person should die or live in utter poverty because of lack of insurance. And some argue that we all were created equal and therefore shouldn't be handed insurance. We, some would say, all have the ability to attain the "American Dream." That is noble and I wish it were true. Racism and the aftermath of decades of it are still very much in effect. The poor may work harder than anyone, but they may not get benefits. It is fact that poorer neighborhoods have higher trends of disease not just because of lack of insurance but because the evolution of our country also made poor neighborhoods closest to environmental hazards, increased crime, decreased police presence, etc. A little known fact, insurance companies because of these increased environmental factors, can deny people OR make their premiums so ridiculously high that they cannot afford it. How is this equal? This is how car insurance works too. If you are a younger guy in a city your insurance goes up. Human lives are held to the same standards as vehicles? How is this free? How is this equal? Trying to change the trend in poverty will take continued decades to undo, but sadly I find it difficult to argue that all people have the ability to move up the social ladder if they work hard enough. As great of an idea that is, it is not the social construction of our country.

Yes I'm being long-winded, so if you are still with me, thank you so much! I am MORE than happy to provide articles and references to this information. All I guess I'm asking, is to think about it and, if you believe it, please share with as many people as possible. Sign the white house petition. It's time for some change!!
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