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"Legal documents that express our wishes are not enough to prepare us for our final days. We must talk honestly with our loved ones, our clergy and our doctors and nurses about the choices we would make if confronted with a chronic or terminal illness." Rosalynn Carter
What do I do with my Advance Directive?
If you have completed any form of Advance Directive, you still remain in control of you health care decisions as long as you are able to communicate your wishes. If you are not longer able to make decisions for yourself, doctors and other health care providers are legally obligated to follow your Advance Directive.
However, in order to honor an Advance Directive, the physician or healthcare institution must be aware of it and what is says. It is up to you and those close to you to ensure that everyone who might need a copy of your Advance Directive in fact has a copy.
Give a copy to the person you appointed as your decision-maker - your health care (medical) power of attorney.
Give a copy to your family members and loved ones. Take the time to discuss your choices, values and preferences.
Give a copy to each of your physicians. You can take a copy with you on your next office visit. If you have a specialist that you do not visit often, mail one to the office address with a note asking for the document to be added to your medical record.
Keep extra copies on hand, in your wallet or purse, with your health insurance information, and in the glove compartment of your car.
Who do I tell?
The most important thing you can do to assure that the health care decisions you have made in advance are followed is to talk about them. Talk to your family, friends, neighbors, clergy, doctors and other health care providers. Let them know what you have decided, what your values and preferences are, and what you do and do not want when you cannot speak for yourself.
Whether you are in good health, or experiencing a chronic medical condition, each of your doctors should be your partner in developing an Advance Directive. Good health care decision-making requires good communication among all interested parties, and your physician is a key component of your health care plans.
Mention "Advance Care Planning" or "Advance Directive" when you make your next doctor's appointment and tell the office scheduler that you will need some time to discuss these issues with your doctor.
Bring your Advance Directive to show your doctor and leave a copy.
The doctor's time, as well as your time, is very valuable so prepare ahead. Bring a list of your questions. You might want to ask:
- What is my diagnosis (condition), and how serious is it?
- What usually happens in an illness like mine?
- How long might I have to live? Ask for a range of time - the best case and the worst case possible.
- What are my options for treatment?
- What are the benefits and risks of each treatment option?
Since your doctor cannot predict every possible future medical situation, discuss the values and beliefs about life's quality that help you make your decisions.
What do you want treatment to accomplish? Would you want to receive treatment to prolong your life, whatever your quality of life? Or, if life-sustaining treatment could not restore you to a level of quality of life you find acceptable, would you want to stop treatment?
Once you have identified the quality of life you find acceptable, your doctor can make medical decisions for you on the basis of these values. If treatment would help achieve one of your goals, the treatment would be provided. If treatment would not help achieve one of your goals, the treatment would not be provided.
Your doctor may be surprised and pleased that you are bringing up this topic. Ask your doctor if he will be able to honor your advance directive and if he has any questions about what you mean or what kind of care your want.
By expressing your wishes in advance, you help family or friends who might otherwise struggle to decide on their own what you would want done. Talking to your family and friends about your values and healthcare decisions is of critical importance. Family members and loved ones may experience needless agony in being forced to make life and death decisions without your clear guidance. Talking to your family about your plans for your future in advance will be a most meaningful gift if they are ever in this position.
It is natural for loved ones to resist a conversation about the end of life. It evokes emotions that are hard to handle. If they say, "Oh, don't talk about that. You are doing fine. Just think positive," you can respond, "I know it is difficult to talk about, but I'd like you to know what I want when I can't speak for myself. I'm counting on you to look out for me."
Older people want to talk to their children and discuss their preferences, but don't want to worry the kids. Adult children want to talk with their parents, but fear that they will be bringing up a difficult subject. Doctors want to ask their patients about their health care choices, but don't want to open a frightening topic. Patients want to talk to their doctors about their values and choices, but don't want to seem too pushy.
Everyone wants to talk about it but no-one wants to start.
Start with your family and loved ones. Just let them know what you think, and ask for their opinion:
"We never know when our time will come, but we all know it is coming. I want to share some of my thoughts about this, so that you don't have to make decisions without knowing what I want. I just want you to be prepared to speak for me if I can't speak for myself."
"I have some ideas about how I want the end to be, so I have started to prepare for that time, whenever it comes. I want to share these thoughts with you and hear what you have to say about them."
"I have been thinking about my future. I don't want you to have to make a treatment decision for me, without knowing what I would want. I would like to share my thoughts and listen to your ideas as well."
"I am taking care of some matters that have to do with my will, my belongings, and my health care. I would like to talk with you about my wishes for how medical decisions will be made if needed. If I were unable to make decisions for myself, I need to know if you would be able and willing to speak for me."
While it is impossible to anticipate all of the different medical decisions that may come up, you can make your preferences clear by stating your goals for medical treatment.
What do you want treatment to accomplish? Would you want to receive treatment to prolong your life, whatever your quality of life? Or, if life-sustaining treatment could not restore you to a level of quality of life you find acceptable, would you want to stop treatment?
Once you have identified the quality of life you find acceptable, your family and physicians can make medical decisions for you on the basis of these values. If treatment would help achieve one of your goals, the treatment would be provided. If treatment would not help achieve one of your goals, the treatment would not be provided.
What if I want to change my Advance Directive?
You can cancel or change any Advance Directive by telling your agent or health care provider in writing of your decision to do so. Destroying all copies of the old one and creating a new one is the best way. However, the Advance Directive with the most recent date is the legal one that will be followed. Make sure you give a copy of the new one to your physician and anyone else who received the old one.
If you do not have time to put your changes in writing, you can make them known verbally. Tell your doctor and any family or friends present exactly what you want to happen. Wishes that are made in person will be followed in place of the ones made earlier in writing. Be sure your instructions are clearly understood by everyone you have told.