Education and Training
Education and Training
Education is power and with training, you can actively handle and execute all the components needed to ensure that you are taking care of someone suffering from Alzheimer’s. Although it is hard to think about your loved one’s progression through the stages of Alzheimer’s there is important information that will help you handle the legal issues that accompany the job of caregiving.
What is an Advance Directive
An advance directive is a legal document that explains how you want medical decisions about you to be made if you cannot make the decisions yourself. An advance directive lets your health care team and loved ones know what kind of health care you want, or who you want to make decisions for you when you can’t. An advance directive can help you think ahead of time about what kind of care you want. It may help guide your loved ones and health care team in making clear decisions about your health care when you can’t do it yourself.
What is an Advance Directive
The most common types of advance directives are the living will and the durable power of attorney for health care (sometimes known as the medical power of attorney).
There are many advance directive formats. Some follow forms outlined in state laws, others are created by lawyers or even the patients themselves. State laws and courts decide whether these documents are valid. All states and the District of Columbia have laws about advance directives. Be sure to know specific requirements of writing legal advance directives in your state.
Before you create an advance directive, you will want to talk with your health care provider, your loved ones, and at least one person that you may want to choose as your proxy or agent (substitute decision-maker). Tell them about your situation, wishes, and fears, because they are the ones who will help put your wishes into effect if you are unable to do so.
You can usually get advance directive forms from your state bar association, or from Caring Connection (part of the National Hospice and Palliative Care Organization). Additionally, when you are ready to fill out your advance directive, your health care team might be able to help.
The Living Will
The living will is a legal document used to state certain future health care decisions only when a person becomes unable to make the decisions and choices on their own. The living will is only used at the end of life if a person is terminally ill (can’t be cured) or permanently unconscious. The living will describes the type of medical treatment the person would want or not want to receive in these situations. It can describe under what conditions an attempt to prolong life should be started or stopped. This applies to treatments including, but not limited to dialysis, tube feedings, or actual life support (such as the use of breathing machines).
Before your health care team uses your living will to guide medical decisions, 2 physicians must confirm that you are unable to make your own medical decisions and you are in a medical condition that is specified by your state law as terminal illness or permanent unconsciousness.
There are many things to think about when writing a living will. These include:
- If you want the use of equipment such as dialysis machines (kidney machines) or ventilators (breathing machines) to help keep you alive.
- Do not resuscitate orders (instructions notto use CPR if breathing or heartbeat stops).
- If you want fluid or liquid (usually by IV) and/or food (tube feeding into your stomach) if you couldn’t eat or drink.
- If you want treatment for pain, nausea, or other symptoms, even if you can’t make other decisions (this may be called comfort careor palliative care).
- If you want to donate your organs or other body tissues after death.
It is important to know that choosing not to have aggressive medical treatment is different from refusing all medical care. A person can still get treatments such as antibiotics, food, pain medicines, or other treatments. It is just that the goal of treatment becomes comfort rather than cure.
You may end or take back a living will at any time.
Living will laws vary from state to state. Be sure to know your specific state laws. If you spend most of your time in more than one state, be sure to speak to your health care provider and review each of the states’ laws. Also, check your state so you know if you have to renew your living will, and if so, how often you have to do it.
Durable Power of Attorney for Health Care/Medical Power of Attorney
A durable power of attorney for health care, also known as a medical power of attorney, is a legal document in which you name a person to be a proxy (agent) to make all your health care decisions if you become unable to do so. Before a medical power of attorney can be used to guide medical decisions, a person’s physician must certify that the person is unable to make their own medical decisions.
If you become unable to make your own health care decisions, your proxy or agent can speak with your health care team and other caregivers on your behalf and make decisions according to the wishes or directions you gave earlier. If your wishes in a certain situation are not known, your proxy or agent will make a decision based on what he or she thinks you would want. If you regain the ability to make your own medical decisions, your proxy (agent) can’t continue to make medical decisions on your behalf.
The person you name as a proxy or agent should be someone who knows you well and someone you trust to carry out your wishes. Your proxy or agent should understand how you would make decisions if you were able, and should be comfortable asking questions and advocating to your health care team on your behalf. Be sure to discuss your wishes in detail with that person. You may also choose to name a back-up person in case your first choice becomes unable or unwilling to act on your behalf.
Durable power of attorney laws vary from state to state. Talk to your health care team and check your state laws.
POLST (Physician Orders for Life-Sustaining Treatment)
A POLST form also helps describe your wishes for health care, but it is not an advance directive. A POLST form has a set of specific medical orders that a seriously ill person can fill in and ask their health care provider to sign. A POLST form addresses your wishes in an emergency, such as whether to use CPR (cardiopulmonary resuscitation) in an emergency, or whether to go to a hospital in an emergency and be put on a breathing machine if necessary, or stay where you are and be made comfortable.
A POLST form has to be signed by a qualified member of your health care team, such as your doctor. Emergency personnel, like paramedics and EMTs (Emergency Medical Technicians) can’t use an advance directive, but they can use a POLST form. Without a POLST form, emergency personnel are required to provide every possible treatment to help keep you alive.
Do Not Resuscitate (DNR) Orders
Resuscitation means medical staff will try to re-start your heart and breathing using methods such as CPR (cardiopulmonary resuscitation) and AED (automated external defibrillator). In some cases, they may also use life-sustaining devices such as breathing machines. (See What is a life-sustaining medical treatment? in Frequently Asked Questions About Advanced Directives.
In the hospital
A Do Not Resuscitate or DNR order means that if you stop breathing or your heart stops, nothing will be done to try to keep you alive. If you are in the hospital, you can ask your doctor to add a DNR order to your medical record. You would only ask for this if you don’t want the hospital staff to try to revive you if your heart or breathing stopped. Some hospitals require a new DNR order each time you are admitted, so you might need to ask every time you go into the hospital. But remember that this DNR order is only good while you are in the hospital. Outside the hospital, it’s a little different.
Outside the hospital
Ask your health care provider how you can get a wallet card, bracelet, or other DNR documents to keep when you are at home or not in the hospitals. Some states have standard DNR forms that are meant to be used outside the hospital. The non-hospital DNR is intended for Emergency Medical Service (EMS) teams. Unless you have a valid and visible DNR order, the EMS teams who answer 911 calls are requiredto try to revive and prolong life in every way they can. A non-hospital DNR must be signed by both the patient and the health care provider. Talk to your health care team if you would like a DNR order to keep with you.
Organ and tissue donation
Organ and tissue donation can be included in your advance directive. Many states also provide organ donor cards or add notations to your driver’s license.