Perhaps one of the saddest facets of the healthcare debate has been its distortion of the provision regarding end of life issues. This compassionate piece of the proposed legislation was employed so successfully as a scare tactic, that it has been removed from the pending legislation.
Let’s look at what was actually proposed and why. Hospitals are financially stressed and under-funded. They can rarely afford the luxury of doing anything for a patient, unless they can charge for it and be reimbursed. This is why the President proposed reimbursing hospitals who offered counseling to patients about end of life issues—the range of options available to them in Intensive Care, Supportive Care, Pain treatment, hospital, home care, nursing home care, and Hospice Care.
Anyone who has been admitted to any hospital in the US in the past five years has been asked if they’d be interested in completing an Advanced Directive. This form lays out a patient’s options for handling their last days and hours. As of now, however, there is no financial support for counseling patients and their families about those options. There is no money in the system to help dying people through the process of deciding exactly how they want to die.
My family was lucky. My sister and I had both worked in hospitals for over twenty years. We knew how to negotiate the system; we knew what was available.
My father had been very clear that he did not want to be kept alive artificially for an extended length of time if there was no hope of recovery. He had completed an Advanced Directive before he was admitted to the hospital for shortness of breath. When he ended up on a respirator in Intensive Care, we were able to show the hospital that this was not what my father wanted. The staff at Martha Jefferson honored my father’s wishes. After his breathing tube was removed, he woke up for an hour and was able to talk with us. Then he died quietly with his family around him.
Shortly after my father died, my mother became ill with Lou Gehrig’s disease. Within three months she could not speak, eat or drink, but she neither wanted to die in the hospital, nor be put on artificial life support. She chose Hospice Care, which turned out to be one of the most beautiful and moving experiences any of us had ever had. Mom played cards (and won!) the day before she began losing the ability to swallow and breath. Hospice care eased her pain and panic, and she died quietly, at home, with her children around her.
Supporting hospitals in their efforts to explain end-of-life choices to patients who are not well-informed about their available options is one of the most humane things we can do for each other. Those who so vocally criticized that part of the president’s proposal for health-care reform were either misinformed or were deliberately trying to confuse the debate with unfounded fear.
Let’s have real debate on all healthcare reform options. Let’s not employ any more scare tactics.
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