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    06 September 2009

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    twitter.com/davidstrandberg

    The timing of the health care plan and the debates over it coincides with a personal and family experience with an element of the proposed plan.

    One Monday afternoon my mother passed away after spending nearly two-and-a-half weeks in hospice care. She entered hospice after suffering a heart attack (on top of 2 strokes in the past 18 months - the doctors knew and my mother knew this latest event would be her last).

    It was my mother's choice to enter hospice - a decision made years in advance - and being with her during the final days of her life was one of the greatest gifts my mother, sister and I have ever received.

    The care my mother received at the Midwest Palliative and Hospice Center in Chicago was professional and, above all, caring and loving. The decisions regarding medication, food, water, spiritual/religious support, etc., were my mother's because she chose to play an active role in deciding how her life would end.

    If my mother's life had ended on the night of her heart attack we never would have had the opportunity to be together and discover incredible peace and strength through our hospice experience. But...that also raises another point. One, as I am learning, is playing a key role in driving up the cost of end-of-life medical expenses.

    Medicare paid for my mother to die. Twice.

    According to my mother's Living Will, she was not to be resuscitated in the event she faced a life-ending situation. So, she should have passed away on the night of her heart attack (she flatlined for 18 minutes before she came around)...or, at least have been given the chance for nature to have taken its course with the administration of "comfort care" to keep her pain free.

    On the night of the heart attack the EMT's didn't know of her wishes and my mother was unable to tell them or provide supporting documentation - so they worked to save her life. That's what EMT's do. And do well. Same thing in the ER. No record of the DNR? They worked to save her life. And they did.

    In order to prevent "heroic" life saving measures my mother did not want, as a family we had to tell the medical staff of my mothers end-of-life requests. To get that approved a doctor had to sign off on the request...and the hospital would not honor the request until legal documentation was provided. The doctor signed off...documents were provided...and the hospital approved. All about 12 hours after her life was "saved."

    So, Medicare paid for my mother's life to be saved...and for it to end. Only one was necessary. And while we haven't received copies of hospital bills and Medicare payments - I know that the cost to save her life and a few days in the hospital far exceeded her hospice costs.

    More and more people have Living Wills with many/most stating their end of life care requests. The problem is, what if an individual with a DNR has an accident while they are out of town, at work, a shopping center...wherever, whenever...and he/she can't speak to their wishes and family members can't be reached in the few minutes before an EMT team arrives and begins to help save a life; work the hospital will continue.

    The responsibility for end of life wishes and communication of those wishes is the responsibility of the individual and his/her family members. Wishes should be kept in a wallet, tattooed to your chest or engraved on a bracelet (but you still need the paperwork). Papers should be taped to the fridge door (EMT's typically look for them there according to the EMT's the family talked to). They should be on file with area hospitals. Maybe there should be a central location for hospitals and EMT's to access that valuable information from those who want to participate in such a service offering.

    From experience I know that it's frustrating to look into the eyes of a loved one who realized that their life ending wishes were not carried out - and they were put into a position of having to face the end all over again.

    But I also know that had we not had those final two weeks together my life and the life of my mother would not have been so rich. Guess she came back from the attack because she had one more gift, after a lifetime of giving, for us to share.

    Bottom lines to all this?

    Not recognizing and honoring end-of-life wishes is costing the government a shitload of money. And communicating end of life wishes is a nightmare - especially if end of life is unexpected (accident, heart attack, etc.)

    Individuals should make their own end-of-life decisions. Not the government. But can end of life discussions take place to inform individuals of their options? Sure.

    Hospice care is not about starving, dehydrating and medicating patients to death. At least that was not my experience nor was it my mother's. If such places exist? Shut 'em down and put the bastards who run the places in prison.

    Hospice should be about living the end of one's life with dignity and strength. The same way my mother lived every day of her life.

    When my sister and I visited each member of the staff to thank them for giving so much to my mother. One of the nurses my mother was very fond of approached us. After crying in my arms and the arms of my sister this wonderful woman pulled herself together and looked at us stating "...it was a privilege to care for your mother."

    No, ma'am. The privilege was ours. And my mom's.

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