Thursday, August 13, 2009

Weighing in on the End-of-Life Debate

It was 1993. I was 16 years old. And, we were sitting in the nursing home waiting for my paternal grandmother to arrive via ambulance from the hospital where we had determined that she could no long live independently due to being diagnosed with dementia. Prior to this decision, she had taken a laxative, then had a minor stroke. She hadn't answered my father's phone calls and, concerned, he drove the 15 miles to her house to find her alive, but unresponsive. Over the next week or so, she literally fought with the nurses at the hospital, giving one a black eye. In a semi-coherent moment, as she lie in bed with arm restraints in place, she tearfully looked at us and asked, "why are you doing this to me? You're my family; you're supposed to help me."

None of us had had experience with nursing homes to this point. My paternal grandfather, the only grandparent who was deceased at that point, had had a major stroke at home on my sister's 6th birthday. He died a few days later in the hospital at the age of 74. So, this was all new to us. I had personally only been in nursing homes through my volunteer work, having visited residents and performed Christmas carols as part of organizations in school. It was an uncomfortable place to be.

My grandmother was alert that day, and seemingly herself, as she was wheeled into the home on a gurney. She smiled at us and waved hello. We - me, my father, aunt, and uncle - were then called into the office of the facility director. During the course of the conversation, while she listed a litany of both services and family responsibilities, she asked us what our DNR decision was. We didn't know what that meant. She explained the "do not resuscitate" order and repeated her question. My father and aunt looked at each other and said, 'well, we'd like every effort to be made to save her.' I had been quiet up to this point...I mean, I was just a teenager sitting in on a very adult conversation. But, I had to jump in. I had seen news stories on television about people who had to go to court to get loved ones removed from life support. So, I asked, "if we did not have this DNR, then she would be put on life support, right? And, if that were to happen, would we be able to take her off when we felt appropriate or would we have to take legal action?" The director smiled and responded that we would, indeed, have to go to court to get her taken off should she be put on life support. That question and subsequent answer changed the entire course of dialogue. After all, my grandmother would not want to be kept alive as a shell of herself. And, she certainly wouldn't want us to go to court over it all. So, my aunt - grandma's power of attorney - signed a DNR and instructed that CPR could be administered, but she was not to be put on life support. After that meeting, my father and aunt both thanked me for asking that question, and for helping them to make an important decision at one of the most difficult times a child can face in the deterioration of a parent.

My family learned from that initial experience. Since that time, we've made conscious efforts to have those important conversations before the decisions are needed. I've known the wishes of my maternal grandparents and my aunt and uncle. I also know the wishes of my parents. There will be no question in my mind of 'what they would have wanted.' But, prior to that experience with my grandmother, we would have never have thought to talk about it.

Ours is a family that could have benefited from having an end-of-life conversation with a doctor, to learn of all implications of our decision, to understand how it would impact our entire family, and to learn what the common national standards were for such decisions. And, if that were available to us back then, I would certainly hope that it would be a meeting covered by our insurance.

To all of the politicians who are amping up this fallacy of "death panels" and who are threatening to take end-of-life counseling services out of potentially covered expenses for proposed health care reform: how dare you. How dare you spread lies, feed on fear, and hinder important conversations that we should be encouraging. How dare you use such an important issue that will, inevitably, impact every single American to further your personal political agenda. How dare you. And to the Senator who said, "you should be having these conversations 20 years before you die" and 'you should be thinking of your soul's salvation through Jesus'....a double how dare you. First and foremost, most families are too busy living their lives and, quite frankly, trying to simply survive nowadays, to have that conversation. It's a difficult one to have, Senator. And it's morbid, obviously, making it quite uncomfortable. Most Americans lack the personal funding to have a lawyer on-call, as I'm sure you have. And, we struggle to even get in to see a doctor sometimes, as I suggested in a previous post. Second, who are YOU to tell me who my salvation should be through? I am a Christian, as are all in my family. The paternal side of my family are devout Catholics. Yet, that didn't make this decision any less difficult in the case of my grandmother. In fact, that can complicate matters sometimes. However, Americans come in all forms, Senator. Please remember that your constituency - which in your position now includes ALL AMERICANS - includes not only Christians.

In addition to my disgust over the lies perpetrated over this end-of-life issue, I am more and more angered by the use of the term "Nazi." I have family who fought in WWII. They didn't overthrow the Nazi regime to have it, decades later, used as a political tool to discredit the President of the United States. If you want to pull the socialist card, fine...whatever. But, the use of the term Nazi, the painting on office signs of the swastika, and the portrayal of President Obama with a Hitler mustache all need to stop immediately. To continue to use these symbols not only shows your ignorance of what the Nazi movement was about in its entirety, but also your insensitivity to those who lost family members in European concentration camps, those who served heroically to free nations from that power, and every single American who today would be targeted by Nazi-following groups: the non-white, non-Protestant, and non-heterosexual. The only thing that does make me chuckle, just a tiny bit, is that those sub-groups who truly follow the Nazi philosophy are probably cringing at the idea of a black man being portrayed as one of them, in the symbolism of the dead leader they so admire.

This debate - the true debate - over how to reform our health care system is too important for this ridiculous behavior by both elected officials and their supporters. Yes, people are scared. Change is always scary and difficult. So, let's let those who are scared ask legitimate questions and let's answer those questions honestly. Instead, we're now seeing politicians and the industries who pay them play on those fears, using them as propaganda simply so they can continue to personally make money and/or get reelected. I have yet to find a politician against health care reform who has a true, legitimate argument against some sort of reform. I beg of our elected officials to take a serious look at this issue, to stop feeding the fear, and to compromise in the true interest of the American people -- an interest based on the health and well-being of us all, not just a select few or those who believe exactly what you do. And I encourage you to set the standard for your followers to protest, if they so wish, in a constructive, non-offensive manner so that their concerns and opinions can truly be heard instead of dismissed as fanaticism.

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