A person-centered future plan should reflect the wishes, values, and goals of the person it is written for. It should include information about all aspects of a person's life including: 

• Daily routines, needs and supports
• Living arrangements
• Finances, including the family and person's public benefits, assets, incomes, trusts, and insurance policies
• Doctors' contact information and information about the person's medical history
• Decision-making support and future planning tools
• Details about the person's employment, leisure activities, beliefs, behaviors, interests, friendships, and other relationships

Selected provisions of Section 306 of the Older American's Act set out area plan requirements. The plan is required to "provide information relating to the need to plan in advance for long-term care, and available public and private long-term care options, service providers, and resources." In practice, AAAs or their community partners may provide options counseling to individuals seeking services. Through outreach, information, and assistance regarding benefits or case management, AAAs or their community partners may assist individuals with information about enrolling in long-term care services, and public or private benefits. Access to medical benefits and services is a critical aspect of any future plan.

Under the OAA, the supportive services program funds social services aimed at helping older people remain independent in their homes and communities. AAAs are required to devote some funding to three categories of priority services: access to services - as noted above; in-home services, such as homemaker, chore, personal care assistance and respite care; and legal assistance. AAAs offer an average of 27 different services - many of which can be directly factored into future planning. According to USAging's 2020 AAA Survey Report 73 percent of AAAs offer assessments for care planning either directly or through contracts with providers. Services can include providing education, training, and information. Comprehensive legal assistance can include guidance in completing advance planning documents and resources such as Advance Directives, Living Wills, Authorizations for Final Disposition, and Durable, Healthcare, and/or Finance Power of Attorney forms (depending upon the state) so that older adults and people with disabilities are able to fully document their personal preferences and values.

As defined by the American Bar Association, a "health care advance directive" is the general term for any written statement you make - while competent - concerning your future health care wishes.^[4] Overall, an advance directive is the primary legal tool for any health care decision made when one no longer has the capacity, or ability, to share their preferences or decisions. Formal advance directives may include living wills and a health care power of attorney. A living will is a written instruction spelling out any treatments you want or do not want in the event that you no longer have capacity to share your wishes, such as if you are unable to speak for yourself or are unconscious. Comparatively, a health care power of attorney (POA) is a document that appoints someone, and perhaps an alternate, of your choosing to be your authorized agent. An agent's level of authority with health care decision making is defined by the individual who appointed them and what is documented in the POA. Depending upon what is written in the specific POA, an agent may make choices that go beyond end-of-life decisions. Due to this fact, the health care power of attorney is viewed as broader and more flexible than the living will. It is important to note that in some states, an additional power of attorney may be needed for healthcare payments or public benefit applications; some states require a power of attorney of finance for these situations and a power of attorney for healthcare may not be sufficient in some states.

When considering advance directives, one state's laws and requirements may be different than the next. To assist in the researching process, we have compiled information on where to find state-by-state guidance on preparing advance directives and further helpful information on future planning.

Development of comprehensive advance directive laws stemmed from the creation of the Social Security Act In 1965. Under Section 1902, which details state plans for medical assistance, part (a)(58) requires that the State Medicaid Agency develop a written description of the law concerning advance directives. This description would then be distributed by providers or organizations under the requirements of subsection (w)^[1]. These requirements for medical care providers or organizations include.

• Providing and maintaining written policies and following procedures with respect to advance directives;
• Ensuring compliance with the requirements of all State laws in respecting an individual’s rights to make decisions; concerning such medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives;
• Not conditioning the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive;
• Documenting in the individual’s medical record whether or not the individual has executed an advance directive;
• Providing (individually or with others) education for staff and the community on issues concerning advance directives.

While federal law does not require individuals to complete any form of advance directive, it does require State Medicaid Agencies to provide the option to consumers and relevant information to providers.

Since the passage of the Social Security Act, two major pieces of legislation have impacted how states handle advance directives:

1. The Patient Self-Determination Act of 1990 (42 CFR § 489.100-104)^[2] is a federal amendment passed by Congress to amend titles XVIII and XIX of the Social Security Act. This law requires hospitals, other providers, and health plans to provide written information that advises adult patients of their right to make decisions concerning their medical care. It requires that the patient be asked about advanced directives and that any wishes the patient may have regarding their care is documented. The intent of this law is to go one step beyond the initial provisions in the Social Security Act, provide an opportunity to educate the entire population on advance directives, and help older adults understand their options.

2. The Uniform Health-Care Decisions Act was drafted by the National Conference of Commissioners on Uniform State Laws in 1993.^[3]The goal of this act is to consolidate various state laws dealing with advance directives for health care and health-care powers of attorney. Wyoming, Alaska, Hawaii, Mississippi, Delaware, Maine, and New Mexico have all adopted the act and it serves as a useful comparison tool for other states to examine the comprehensiveness of their own laws concerning advance directives.

There are a variety of national resources available to assist with Future Planning needs.

American Bar Association.

Alzheimer's Association.

AARP.

Five Wishes.

National Hospice and Palliative Care Organization.

The Arc Center for Future Planning.

The Conversation Project.

The Centers for Medicare & Medicaid Services Innovation Center.

The Center on Youth Voice, Youth Choice.

Common Terms

States often have different names for living wills, the health care power of attorney, and an agent. Here are some common terms that are used:

• Medical directive, medical declaration, or directive to physicians are used in place of living will 
• Health care proxy, health care surrogate, or medical power of attorney are used in place of health care power of attorney 
• Attorney-in-fact or proxy are used in place of agent 

Definitions

Guardianship: Also known as a “conservatorship,” guardianship is a legal process by which a court appoints an individual or organization to make decisions on behalf of an individual after finding that the person is unable to make some or all decisions for themselves. The process is governed by individual state law in which a court appoints someone (a guardian) to have authority over the decisions for another.

Supported decision making: Supported decision making is a newer model that assists older adults and people with disabilities to receive the help they want and need to make their own decisions. SDM can be used as an alternative to substitute decision making or in conjunction with substitute decision making. SDM may look different for each individual and can use different tools and models of support. SDM empowers individuals to make their own decisions while providing support and assistance from one or more others to do so.

Representative or substitute payee: A representative (or substitute) payee is an individual or organization appointed by the Social Security Administration to receive Social Security and/or SSI benefits for someone who cannot manage or direct someone else to manage their money. The main responsibilities of a payee are to use the benefits to pay for the current and foreseeable needs of the beneficiary and properly save any benefits not needed to meet current needs.

Health care surrogate decision making: A health care surrogate decision maker, also known as a health care proxy or as agents, provides direction for patients who are unable to make decisions about personal health care. If there is no durable power of attorney for health care document in place and no court-appointed guardian with authority to make health care decisions, most states provide for a default surrogate decision maker in their state laws (such as next of kin, specified in a priority order by state statute).

Powers of attorney: Power of attorney is granted to an “attorney-in-fact” or “agent” to give that individual the legal authority to make decisions for another. The laws for creating a power of attorney vary from state to state, and there are different types of issues that the attorney-in-fact can be given authority to deal with, such as finances and health care decisions. A POA can be limited or general.

Advance medical/health care directive: An advance health care directive, (may also known as living will, advance directive, or advance decision), is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. An advance directive can address, for example, a person’s wishes regarding resuscitation (DNR).

[1] https://www.ssa.gov/OP_Home/ssact/title19/1902.htm

[2] https://www.ncbi.nlm.nih.gov/books/NBK538297/

[3] https://www.uniformlaws.org/committees/community-home?CommunityKey=63ac0471-5975-49b0-8a36-6a4d790a4edf

[4] https://www.americanbar.org/groups/public_education/resources/law_issues_for_consumers/directive_whatis/

This resource is provided on an “as is” basis and is made available without representation or warranty of any kind. ADvancing States makes no commitment to update the information contained herein, and may make modifications and/or changes to the content at any time, without notice. While ADvancing States strives to provide accurate and timely information, there may be inadvertent technical/factual inaccuracies and typographical errors in this document. If the user finds any errors or omissions, please report them to ADvancing States at info@advancingstates.org