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WHAT YOU NEED TO KNOW:
A living will is a type of medical advance directive. It tells healthcare providers about the medical care you want when you are not able to tell them. This may happen if you are unconscious (cannot be awakened). It may happen if you are not be able to think clearly or cannot communicate what you want. You may have a terminal (deadly) illness or be in a long-term coma. Some medical treatments can prolong life, even when recovery is not possible. If you will not recover, a living will can tell others the treatments you want and the treatments you do not want. Most states have forms to help you make a living will. Talk with your family and healthcare providers about your wishes. Follow the rules of your state to prepare and sign your living will. Give copies of your living will to your loved ones and healthcare providers to keep in your medical records.
When a living will takes effect:
A living will takes effect when you cannot make your own medical decisions. Healthcare providers have to decide that you can no longer make medical decisions for yourself. Depending on your state's rules, 1 or 2 doctors must decide the following:
- You can no longer let healthcare providers know what care you want: You may be unconscious or in a coma. You may not be able to communicate what care you want.
- You lack mental capacity to make decisions: You can communicate, but your ability to make good decisions has changed. You are not able to understand the choices that need to be made about your medical care. You are also not able to understand the effects of the choices that need to be made.
- You have a terminal illness or condition. The doctors must also decide that you have a terminal or other condition that falls under your state's living will law:
- Terminal illness: You are not expected to get better from your illness. Your healthcare providers expect that this illness will cause your death. Each state may define terminal illness in different ways.
- Vegetative state: A vegetative state is when you have a bad brain injury and never fully wake up. It can be a long lasting or permanent condition. Your mental functions are reduced or lost, but your basic body functions still work. You are not able to communicate, interact with others, or live as you did before.
What to think about when you prepare your living will:
Ask your healthcare provider for worksheets or forms to help you write your living will. These will help you to prepare your living will's written instructions for your end-of-life care. Think about the situations where you may want to limit your medical treatments. Treatment options include the following:
- All treatment to try to save your life.
- All treatments, but stop them if they are not working within a certain time.
- Only treatments that do not cause pain or discomfort.
- Only palliative (comfort) care. Comfort care provides medicine to take away pain, but not treatments to save or prolong your life.
Treatments that a living will can cover:
With a living will, you can make decisions about medical care that can prolong your life before you need it. You decide what treatments you want or do not want. You can choose to stop, limit, or not have certain medical treatments. Some of the treatment choices include:
- Invasive tests or treatments: Invasive tests or treatments may be uncomfortable or painful. They can include lab tests, blood transfusions, antibiotic treatment, and surgery. These tests or treatments can prolong your life, even when recovery is no longer possible. Think about how you want to feel and how long you want to be able to live. For example, you may be willing to have some pain with a treatment if it allows you to live longer. Or you may want to refuse or stop treatments that prolong life, but cause you constant or severe pain.
- Short-term and long-term treatments: You may want short-term treatments when there is a good chance that you will get better. You may not want these treatments if your chance to get better is very small. For example, you may want a feeding tube for a short time while you recover from surgery. You may not want a permanent feeding tube if you have a severe and long-term brain injury. You may want to have a limit on the amount of time for getting other life-sustaining treatments.
- Tube feeding: Healthcare providers may also refer to tube feeding as artificial nutrition and hydration. If you are unconscious or cannot swallow, tube feeding gives you the nutrients you need to stay alive.
- Life support: Life support treatments can take over when certain organs in your body no longer work. You may need a ventilator machine if you cannot breathe on your own. If your kidneys stop working, you may need dialysis to remove wastes from your blood.
- Resuscitation: Healthcare providers use CPR (cardiopulmonary resuscitation) to try to restart your heart if it stops beating. Sometimes electric shock is used. Consider when and how long you want CPR if you have a terminal disease or are in a long-term coma. If you do not want CPR, you can add a DNR (do not resuscitate) order to your living will. A copy of the DNR order must also be placed in your medical records.
When you may want to limit treatment:
Think about the following situations. Then think about the treatment you would want if there is little chance you will get better:
- You cannot walk, but you can use a wheelchair.
- You have constant and severe nausea or diarrhea.
- You cannot control when you urinate or have bowel movements.
- You need healthcare providers to feed, bathe, and help you with toileting.
- You must use a ventilator to breathe.
- You must use a feeding tube to eat.
- You need kidney dialysis to live.
- You cannot think or communicate well.
- You no longer know your family or friends.
- You are in constant or severe pain.
How to prepare a living will:
- Talk with your family and healthcare providers about your wishes. They will have questions for you. These questions may help you better prepare your living will. Your healthcare provider may not agree with your wishes. If this happens, you will need to find another healthcare provider to help you.
- Review your medical treatment options. Ask your healthcare providers to explain anything you do not understand.
- Write down any other end-of-life instructions you want followed. This includes burial or cremation, and whether you want to be at home or in a hospice when you die.
How to make sure your wishes are known:
- Tell healthcare providers and family or friends that you have a living will. When you finish writing your living will, talk with your family and healthcare providers about it. This will help everyone understand your wishes. Keep a card in your wallet or purse that says you have a living will.
- Keep the original and make copies of your living will. Keep your living will original document in a safe place that is easy to find. Do not put your living will in a hidden or locked place in your home, or in your safe deposit box at the bank. Give your healthcare providers and family members copies of your living will. Make sure healthcare providers put a current copy in your medical records where you get care, such as the hospital.
- Consider other places to keep copies of your living will. Some states have registries that keep copies of your living will and other advance directives for you. Some services allow healthcare providers to access your living will by computer. Your church or house of worship may also be able to store a copy of your living will for you.
For more information:
- Caring Connections
National Hospice and Palliative Care Organization
1731 King Street, Suite 100
Alexandria , VA 22314
Phone: 1- 800 - 658-8898
Web Address: http://www.caringinfo.org
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.