"Chance favors only the prepared mind." - Louis Pasteur
Edna is 87 years old. In spite of having her share of heart palpitations and near misses, she's in pretty good health. In her 80 plus years, she's seen a lot of life-and death-and when her time does come, she has no intention of lingering helplessly between the two as many of her friends and family have done. On her 80th birthday, she has her attorney prepare an advance directive. He uses a one-paragraph form Durable Power of Attorney for Health Care right out of the state code. Because Edna never married and doesn't have any children, she names Nephew Rodney-her brother Clifford's boy-as her health care proxy. Rodney's a good man and he's always been respectful of his Aunt Edna. She wants him to be able to act on her behalf to make sure her wishes for health care are followed in case she's not able to take care of herself in the future. To be certain, she carries a copy of her Durable Power of Attorney for Health Care in her apron pocket.
About a year later, Edna is planting her spring bulbs and suffers a major heart attack right in the middle of the tulip bed. The ambulance driver finds the dog-eared advance directive in Edna's pocket and gives it to the emergency room nurse. She calls nephew Rodney immediately and he hurries to the hospital.
When Rodney arrives, Aunt Edna is having a lot of trouble breathing and the doctor asks Rodney if he wants Aunt Edna to have the assistance of a respirator. He responds without hesitancy: "I had no idea Aunt Edna named me as her proxy! How thoughtful of her! She was such a fighter, I'm sure she would want to live. Plug her in!" And dear, well-meaning Aunt Edna exists in a permanent vegetative state, hooked up to life-sustaining measures-a respirator and feeding tube-until her heart finally gives out six years later.
Edna was one of the small minority of Americans who has executed an advance directive, a Durable Power of Attorney for Health Care , naming a proxy to act on her behalf in the event she is unable to manage her own care. Bravo for her. But she missed one important step: she failed to communicate to her nephew Rodney, the person she named and trusted to act for her, exactly what life-sustaining measures she wanted to have-and avoid.
If you're reading this book, you're probably still able to manage and make decisions concerning your medical care. Perhaps you've worked long and hard to establish a meaningful relationship with your doctor, whom you trust. You may even have shared your thoughts on what life-sustaining measures you want to have or withheld if you are incapacitated or terminally ill and can no longer communicate your wishes.
Assuming you remain under your own doctor's care, although many physicians now delegate their patient visits to hospital-only doctors, what are the chances that he or she will accurately recall any conversations about health or end-of-life care you may have had over the years? And do you know whether verbal care instructions not reduced to writing are considered valid in your state?
There is really only one recognized method of making sure that your health care and end-of-life wishes are known and respected, and that is with written advance directives. There are two types of advance directives: the Durable Power of Attorney for Health Care (the DPAH) and the Living Will. Both assume that, due to incapacity, the patient is no longer able to manage his or her own care or grant informed consent for medical treatment. This means the patient cannot communicate for whatever reason or, if conscious, is unable to agree to a medical procedure with full understanding of its risks and of any alternatives.
Any medical condition has the potential of rendering the patient unable to manage his or her care. Let's say you are having your tonsils removed. During surgery, the doctor discovers a small growth in your throat and thinks it should probably be removed. Since you are unconscious and it is not possible to seek your permission, who can authorize the doctor to perform that additional procedure?
If you previously executed a DPAH, you named a person to make health care decisions for you in the event you ever became incapacitated: a health care proxy. A tonsillectomy is not normally a life-threatening surgery, and you are not expected to be permanently incommunicado; but for the time being, you are not able to manage your own care and give informed consent to a medical procedure. Your DPAH specifies that your spouse can make those decisions on your behalf. The doctor consults with your husband, and he agrees that the growth should be removed while you are under anesthetic. After surgery, you awake in the post-operative suite with no ill effects of the surgery. Once conscious, your proxy husband is no longer in charge because you are once again able to manage and make informed decisions about your medical care.
Fate puts you back on the surgery table, but this time the most dreadful of unforeseen tragedies occurs: you have a massive stroke while under anesthetic. A few days later, the doctor delivers the sad news to your husband that you have suffered irreversible brain damage. Although you continue to breath on your own, your nutrition and hydration will have to be provided through a stomach tube and an intravenous line. As you are only 52 years old, there is no reason to believe you will not live a normal life expectancy in this condition. The doctor turns to your husband, who is grief-stricken, sleep-deprived and panicked and asks the big question: "What do you want me to do?"
Lucky for your husband, you not only executed a DPAH naming him as your health care proxy, you also took another important step and had a Living Will drawn up. A Living Will specifies your wishes for care in the event you have a terminal or irreversible condition and are incapable of making decisions about your treatment. Most important, you and your husband didn't just sign form Living Wills, you also discussed various medical scenarios that might occur and what you would want the other person to do in each situation. So your husband already knows your Living Will states that no life-sustaining measures are to be administered to you unless it is for a short-term condition, and he knows that you want to be allowed to die without artificial feeding if your condition is irreversible.
Do your Living Will instructions make it easier for your spouse to authorize the withholding of further life-sustaining measures from you, realizing that you will soon die? Maybe, but probably not. As your health care proxy, however, your loved one can make the decision without questioning whether you would agree because it's your wishes for end-of-life care that your proxy is respecting and carrying out.
Now you can see the distinct purpose of each advance directive: one addresses all health care decision-making and includes the appointment of a health care proxy, and one contains instructions for end-of-life care only. These unique functions can be accomplished in two separate documents or one combination advance directive. More about that later.
This chapter and the next chapter concentrate on the first advance directive, the Durable Power of Attorney for Health Care, the DPAH.