by Linda J. Austin


Insatiably curious, I often ask "why?" Why do we need a bill of rights for the dying? Aren't inalienable rights still available? Inalienable - a big word - it sounds like we are being invaded by aliens who aren't able. Where do we get these words? Inalienable simply means we cannot transfer or give away these rights. They belong to each of us on a very personal level. Think of them like your skin, a part of you, attached - not something to be given or taken away.


Paperwork and government mandates take healthcare worker's time and attention away from patients. Does it matter to a dying person? They will get to their destination with or without assistance. After death, paperwork is still a legal document, subject to scrutiny and possible legal action. There is something seriously wrong with a healthcare system that makes paperwork more important than people. Notice I didn't say, more important than patients. Most healthcare workers are in the field to be helpers, compassionate caregivers. If they wanted to be pencil pushers they would be secretaries or accountants. Documentation is now an overwhelming part of the healthcare worker's job description.

Perhaps a Dying Person's Bill of Rights is notification that the patient is still a person, no less human because they are dying. Maybe the document exists as a learning aid. Maybe it gives courage and a sense of control to the dying. More likely, it is a social commentary: people still don't understand, that dying is part of the life cycle. There is no consensus about behavior, roles or responsibilities during the dying process. Our design for living is incomplete. No one stops living when they receive a terminal diagnosis, but socially they (and their families) find themselves cut off from the everyday routine.

Psychology and self-help groups teach us we have power. We are in control. On the surface it sounds great; bolsters our ego allowing us to go back to the demands of life. When forced to look deeper, the power is not ours and we don't control very many things. The dominion of perceived influence shrinks. Apathy arises with the three "C's": didn't cause it, can't cure it; can't control it. This is an educated nation so it is strange that we accept statistical analyses but won't acknowledge the facts of life, preferring instead blissful oblivion. We know that if something happens someone is responsible and someone must take the blame. We don't want to be responsible for death. Therefore, if we don't acknowledge death, our emotional and cultural liabilities decrease. Death is shaped and defined by the written and spoken word. Silence also defines death. Where there is silence, innuendo wields great power.

During nurse assistant training, my instructor said, "When a person is dying, they get to write the script. When it's your turn you can, but for now, the dying get to lead." This priceless advice is worthless if we don't let the dying person lead.


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