Creating a plan for your future in the early stage of the disease can be empowering and ensure your wishes are met. The sooner you establish your legal plans, the better prepared you and your family will be. You can then focus on enjoying your life moving forward.
Basics of legal planning
It is normal to feel overwhelmed by the details of legal planning, and some elements may not apply to your situation. Take your time to review the information on this page. Have conversations with your care partner or family members about the legal plans you would like in place.
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Legal planning should include:
- Taking inventory of existing legal documents, reviewing and making necessary updates
- Making legal plans for finances and property
- Putting plans in place for enacting your future health care and long-term care preferences
- Naming another person to make decisions on your behalf when you no longer can
During the legal planning process, you may hear the term "legal capacity" as it pertains to your ability to execute (put in place by signing) a legal document. Legal capacity is the ability to understand and appreciate the consequences of one's actions and to make rational decisions. This term is important to understand because it does have an effect in later stages of the disease, when some important care issues emerge.
Legal capacity requirements can vary from one legal document to another. A lawyer can help determine what level of legal capacity is required for a person to sign a particular document. Creating a legal document does not imply that your rights are immediately revoked. The legal forms that you complete now will not be implemented until you legally no longer have the capacity to make decisions.
Legal documents help ensure your wishes are followed as the disease progresses and make it possible for others to make decisions on your behalf when you no longer can. Once legal documents are filled out, distribute copies to your care team, including your care partner, spouse, attorney and physicians.
Power of attorney
The power of attorney document allows you (the principal) to name another individual (called an attorney-in-fact or agent) to make financial and other decisions when you are no longer able. A successor agent or agents should also be named in case the original agent you choose is unavailable or unwilling to serve. Power of attorney does not give the person you appoint (agent) the authority to override your decision making. You maintain the right to make your own decisions, as long as you have legal capacity.
What is the difference between a general power of attorney and a durable power of attorney?
Power of attorney documents should be written so that they are "durable," meaning that they are valid even after you, the principal, are no longer able to make decisions for yourself. If a power of attorney document does not explicitly say that the power is durable, it ends if you become incapacitated.
Power of attorney for health care
A power of attorney for health care allows you to name a health care agent to make health care decisions on your behalf when you are no longer able.
Health decisions covered by the power of attorney for health care include:
- Doctors and other health care providers
- Types of treatments
- Care settings
- End-of-life care decisions, such as the use of feeding tubes
- Do not resuscitate (DNR) orders
Discuss your wishes regarding care with your chosen agent early and often to make sure that this person understands your wishes and is willing and able to act on your behalf when the times comes.
Durable power of attorney for finances/property
A durable power of attorney for finances/property allows you to designate another person to make decisions about your finances, such as income, assets and investments, when you can longer do so.
Physician Orders for Life Sustaining Treatment (POLST)
POLST is a standardized medical order form that indicates the specific types of life-sustaining treatment you do or do not want if seriously ill. POLST is a physician order and must be completed and signed by your physician. As a physician order, it is placed in your medical record. Emergency personnel, such as paramedics, EMTs and ER physicians, must follow these orders. POLST complements your advance directives and is not intended to replace it. POLST is not available in every state.
Learn more: Find your POLST state program
What are advance directives?
Advance directives are legal documents that allow a person to document preferences regarding treatment and care, including end-of-life wishes. Types of advance directives include:
- Durable power of attorney for health care
- Living will
A living will, a type of advance directive, expresses your wishes for what medical treatment you want, or do not want, near end of life, such as life-prolonging treatments. Depending on the state in which you live, a specific form for a living will may be required, or it may be drafted by your attorney. It is a document you should prepare and sign before the disease progresses.
A standard will provides information about how your estate will be distributed upon death. In your will, you may name an executor, the person who will manage your estate, and beneficiaries, the person(s) who will receive the assets in the estate. The executor named in the will has no legal authority during your lifetime.
A living trust is the other document that provides direction about your property and assets. It allows you to pool financial resources in one place (a trust) and provide instructions about how to handle these resources when you are no longer able. To do this, you appoint a trustee to follow instructions after you can longer manage your affairs. You should also name a successor trustee who will take over if the initial trustee is unable to serve. All assets should be transferred to the trust, including titles of property and bank accounts. Depending on state law and your personal circumstances, a living trust may allow an estate to avoid probate, the process used by the court to distribute your property after death.
Guardianship / conservatorship
Turning to the courts to appoint a guardian or conservator is not common, and often occurs when families are in disagreement about how to handle your legal, financial or health care decisions.
At the point when you are no longer able to make your own legal, financial and/or health care decisions, and if you did not establish a power of attorney, someone else may have to step in as your guardian (also known as a "conservator" in some U.S. states) to coordinate your care. In this case, the guardian is appointed by a court to make decisions about your care and property. This may be a person who is not known to you or your care partner, typically an attorney or a bank.
Guardianship proceedings can be an arduous and emotionally taxing process for everyone involved. Having conversations ahead of time and involving your family in your plans for the future may help prevent future disagreements about your financial and/or health care decisions that lead to the pursuit of guardianship.
Actor Kyle Chandler shares the difficult conversations he had with his mom after her diagnosis.
While the guardianship process varies from state to state, it requires going to court to testify. The person seeking guardianship files a petition in court, the court issues a summons and a copy of the petition to you. The court will hold a hearing at which time you (or another individual) can object to the guardianship.
Other important documents you should have in place are:
- Medical Release of Information: Signing a medical records release form at your doctor's office will ensure that your doctor can share information with a family member or friend. This can be beneficial to those who are helping coordinate your care.
- Hospital Visitation Form: Federal regulations require hospitals participating in the Medicare and Medicaid programs to adopt written policies and procedures regarding patients’ right to designate the visitors of their choice, including a prohibition on discrimination in visitation based on sexual orientation and gender identity. Although most hospitals are covered by the federal rule above, some other medical facilities like hospices might not be following the same rule. If you are in a domestic partnership, civil union or marriage, you may want to work with your local medical facilities to determine if you need to complete any visitation forms.
Preparing your advance directives
Most people do not need an attorney to prepare advance directives. Many U.S. states have designed advance directive forms for people to complete on their own by filling in the blanks. If you are making plans without a legal professional, you can get copies of advance directives for your state for free through the following:
Getting help from an attorney
If you are unsure about how to complete legal paperwork, you and/or your care partner may want help from well-qualified legal advisors. Consider getting legal advice from an attorney who specializes in elder law, an area of legal practice focused on issues that affect seniors.
If you meet with an attorney, be sure to discuss these three key issues and any other concerns you may have:
- Options for health care decision making.
- Options for managing your personal care and property.
- Possible coverage of long-term care services, including what is provided by Medicare, Medicaid, veteran benefits and other long-term care insurance.
Gather all documents relating to your personal assets ahead of time so you can bring them to your appointment. Use our Financial and Legal Document Worksheet (PDF) to organize what to bring to your attorney.
To find an elder law attorney, start with these resources:
- Call our 24/7 Helpline for referrals at 800.272.3900
- Use our Community Resource Finder to find an elder law attorney in your area
- Use the online directory of the National Academy of Elder Law Attorneys
- Visit LawHelp.org to learn about free or reduced cost legal aid programs in your community