First Problem: Many important issues are not addressed.
Home care and Hospice. Do you want to be taken care of at home instead of a nursing home? If you have a terminal condition, would you want hospice care? Would you prefer to receive hospice care at home rather than in a public facility? Drugs for Pain. If you had a terminal condition and were experiencing intractable pain, what level of medication would you accept? The Connecticut statutory form, and most short documents, merely state: “I do want sufficient pain medication to maintain my physical comfort. I do not intend any direct taking of my life, but only that my dying not be unreasonably prolonged.” If you had a very short life expectancy and extreme pain, would it matter to you if medication might make you drug dependent? Would you want to be pain free even if it meant that you might die sooner? Do you want to remain conscious as along as possible? Most “living wills” do not adequately address these concerns.
Second Problem: No HIPAA authorization — Access to Information Prohibited
A 1996 Federal statute prohibits health care providers from disclosing information about you. You should know for sure that your health care Representative will have the same access to your medical records and physicians that you do, if necessary. The only way to accomplish this is with an Advance Health Care Directive that contains specific “HIPAA language.” Most documents, including the forms in the Connecticut Statutes, do not even mention HIPAA. Under this Federal law, you have to give your Representatives specific written authorization and appoint them as your “personal representatives.” Otherwise, doctors cannot share information about you with them. The law provides heavy penalties for providers who give information to unauthorized people. Withoug a HIPAA authorization, there is a very strong possibility that you will not receive health care that you want, or that you may be given treatment that you don’t want.
Third Problem: Document not honored.
Health care providers sometimes refuse to carry out a Representative’s instructions. A SAD TALE: In one recent Florida case, a jury awarded damages against a nursing home for not heeding the clear directions in an Advance Health Care Directive. Mrs. Neumann, a ninety two year old Alzheimer’s patient, had signed a Directive clearly stating that she “did not want to be kept alive by artificial means.” As she lay dying in the nursing home, rescue workers arrived and began reviving her. She was rushed to a hospital, where she died six days later after various lifesaving measures, including having a breathing tube inserted in her throat. Mrs. Neumann probably felt assured that she would be allowed to die with dignity. Instead, her last days were spent receiving invasive, futile and unwanted “treatment.” A more detailed, personal, Advance Directive might have avoided Mrs. Neumann’s final indignity.
Fourth Problem: What if you’re not dying — just sick or injured?
“Living wills” deal only with “terminal conditions” or permanent unconsciousness. Suppose that, due to sickness or accident, you were temporarily unable to speak or write. Suppose further that you had a medical condition that was not an emergency, but should be addressed now. Health care providers might refuse to discuss your condition and treatment plan unless the Probate Court appoints a conservator for you. How would they know what you would want? Would they listen to your family or a close friend? What if there were a disagreement among your family members. Virtually all “living wills” make no provision for your care if you are sick or injured but are not dying or permanently unconscious. In a real sense, they should not be called “living wills” at all. They are really only “exit visas.” A properly designed Advance Directive provides for your Representative to make health care decisions for you at any time when you are incapacitated and cannot communicate your wishes.
Fifth Problem: Expressing your non-medical desires. “
“Quality of Life” issues may be extremely important to you. Virtually all “living wills” only deal with medical issues. They do not let you express what may be your deepest and most important desires. It is important to let health care providers know what would make you comfortable. Here are two examples of clients’ specific requests: FIRST EXAMPLE: “COMFORT: Even if I am not conscious, I wish to have a cool, moist cloth or ice placed on my head if I have a fever; I wish to have my lips and mouth kept moist to prevent dryness.” SECOND EXAMPLE: “FAVORITE MUSIC: I wish that my favorite music be played, when possible, until the time of my death.
You should be in control of your health care decisions. They should not be made by judges or by doctors who don’t know your wishes. Trusted relatives or friends should have the authority they need to carry out your intentions. A properly planned and drafted Advance Health Care Directive can go a long way toward guaranteeing that you will receive the care that you desire and that you will not be forced to undergo medical procedures that you don’t want. Small may be beautiful, but shorter is not necessarily better. The 3 or 4 page documents, including the ones in the Statutes, are better than having nothing at all. However, they do not let you express your own, personal views on how you want to be taken care of. A properly planned and drafted Advance Health Care Directive can go a long way toward guaranteeing that you will receive the care that you desire and that you will not be forced to undergo medical procedures that you don’t want.