Buckle Your Health Care Seatbelt

I am hoping for a turbulence-free journey to my final destination: to die quietly in my sleep in my own bed after a good day involving family and friends with no signs of dementia and a final slice of chocolate pie. I want no tubes and no machines but my reality, like yours, may be very different and I’m not just talking about a lack of pie. We can prop up the body but not always the mind. A decent ending requires a decent plan. While you still can, set out yours before you need it.

You should execute certain documents and you should discuss your wishes with your family. Without signed documents you may end up in a guardianship proceeding in a courtroom with the clerk determining who will make your health care decisions. You should have a health care power of attorney, a declaration of a desire for a natural death (commonly known as a living will), and a HIPAA form. Some of these forms can be found online (look for the 2007 version of the health care power of attorney and the living will). If you moved here from another state with documents, you should execute North Carolina’s forms. These documents are established under state law not federal so they differ state-to-state. Though North Carolina will recognize other states’ forms, you do not want your doctor to struggle to make sense of what you executed. The goal is to make your end-of-life easier not harder.

The health care power of attorney allows you to name someone (the health care agent) to make health care decisions for you if you become incapacitated. A doctor, whom you can name, determines whether you are incapacitated. If you do not name a specific doctor (and these days most do not), then the attending physician will make the determination. Upon your incapacity your health care agent will make all of your health care decisions. The range of decisions is broad: from whether you should move to a care facility to whether you should receive life-prolonging treatment. You should name a back-up to your first-named agent so that if that person is not available, someone can take over. Try to name someone local so that your agent does not phone in your health care decisions. A good agent is your advocate. I like to say that the agent ought to be able to send a steak back in restaurant. They need the ability to ensure that you receive the kind of care you want.

The living will is a statement you sign expressing your wishes regarding certain end-of-life conditions. Your agent will use it as evidence to the doctor of your wish to forego life-prolonging treatment. If you have a living will signed before the fall of 2007, you may wish to execute a new form, which covers advanced dementia, a condition not covered in the prior version. In North Carolina life-prolonging treatment includes tubal nutrition and hydration. You may choose in the document to have food and water provided. Note that a living will is not a Do Not Resuscitate order, which can only be issued by a physician. A DNR prevents your receiving life-prolonging treatment regardless of your prognosis.

Finally, you should consider a HIPAA Authorization Form. HIPAA stands for the federal Health Insurance Portability and Accountability Act. Its impact is easier to follow than its name. Under HIPAA your health care provider is prohibited from sharing your health care information with anyone unless you have named them as a “HIPAA representative.” If you want several people to receive health information, a generic HIPAA form naming those people can be very useful. Some doctors have their own HIPAA forms but most accept a generic one.

My father, who was a physician, died last year. He always told us: “Tattoo ‘DNR’ on my chest,” and “Pneumonia is an old man’s best friend.” My brother was his doctor and his health care agent. He allowed no intervention when Dad failed physically after a struggle with Alzheimer’s. My brother told me that his role was easier because all of us (three siblings and my mother) knew Dad’s wishes. We knew because he had shared his wishes with us ahead of time. Do the same. Have discussions with your agent and the rest of your family about what you want. Figure out who will be the least accepting of your plan and discuss it with them. Then, having buckled your seatbelt, sit back and enjoy the rest of your flight.

Originally published in Southern Neighbor April 2010

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