Taking End of Life Into Your Own hands

Health care reform is in the press and arguments about whether the government's idea of rationing "will kill grandma" has delivered a great deal of controversy. Studies of healthcare in England place a value on the last year of life at $45,000. If the care required by an individual exceeds this amount, whether or not they will receive additional care is questionable.

Let's be honest. Who wants to talk about dying? Presentations about death generally empty rooms and conference halls. This is really the crux of the issue. We're ignoring our own end of life care so the government wants to intervene because our indecision costs the medical system too much.

We as citizens could solve the problem ourselves if we would only talk about end of life issues. Only 30% of Americans have living wills. This means, for those of you without a living will, that if you become seriously ill and end up on life support there is no one to make decisions for you. No one to turn off the machines keeping you artificially alive. And since you can't speak up, many times you receive lifesaving treatment such as antibiotics, feeding tubes, and ventilation. A thought that would have you rolling over in your grave in disagreement, that is if you were already dead and not being kept alive by mechanical means.

The role of your physician is to extend your life. But what about if you have a terminal illness or are in chronic pain? To what extent are you willing to go to extend your life if it lacks quality of life? A second issue is the lack of information coordination between physicians. I currently have a client who has declined significantly in the past four months and has little idea of what is really wrong with him. In part, I imagine because he may not have listened or read into what his physician, who was likely dancing around the issue, was trying to tell him. Also because his physicians were not talking with each other to develop a coordinated plan of care for my client, oops! I became involved and the physicians are now talking to each other. His condition is terminal and he will not improve. With this knowledge he will be able to make his own end of life plans.

This leads us to the "P" and "H" words that Americans don't want to hear. Palliative care is relatively unknown involves managing chronic pain. It's often a precursor to the other word no one wants to hear - the "H" word, hospice. If someone is under hospice care that means they are dying. No one wants to talk about this. I personally would rather have some control over my situation versus going through months of experimental treatment, radiation, chemotherapy or surgery. Both my brother and my father-in-law, diagnosed with leukemia and cancer, went through months of treatment that made them extremely ill. The doctors only brought up hospice during the last week of their live which in my opinion was an injustice. The discussion about palliative and hospice care should have occurred months earlier, giving my family members a choice about the quality of their lives at the end of lives. What quality of life results from treatment that isn't going to change the end result? I'd rather be medicated and feeling limited or no pain and travel or make my days as enjoyable as possible.

Let's look at the costs of our own non-decisions and the inability of medical providers to talk about the reality of the situation. According to CMS, Medicare recipients who die account for 28% of all costs to the Medicare program in the last two months of life. A Harvard study of advanced cancer patients who did not have end of life conversations with their physicians incurred costs of $2,917 in the final week of their life versus $1,876 for patients who had the conversation. Statistics indicated that the treatments received by the more expensive group did not improve quality or extend their life. Can you believe that a simple conversation about end of life results in a cost reduction of $1,000 per week with the same outcome?

According to the CDC between the months of January through December 2008 there were approximately 2,483,140 reported deaths in the United States. One wonders how many of these lingered at end of life without counseling, how many did not have living wills, how many lives were extended because there was no one to make decisions and how many participated in experimental studies or endured months of chemotherapy or radiation that did not change the outcome? I don't know anyone who wants to die a painful, indecisive death yet only 30% of us have plans NOT to do so. When will you take your end of life into your own hands?

Copyright 2011 Pamela D. Wilson, All Rights Reserved.

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