Position Paper
Health Care Decision Making

Aging Life Care Managers® … coordinating services to optimize health and quality of life.

The Aging Life Care Association® (ALCA) is an organization of practitioners who use a holistic, client-centered approach to caring for older adults or others facing ongoing health or other challenges of aging and/or disabilities. ALCA is committed to maximizing the independence and autonomy of clients and strives to ensure the highest quality and most cost-effective health and human services. Members help clients and their families cope with challenges faced by people with disabilities and older adults through education, advocacy, counseling, and service delivery.

Health Care Decision Making

In accordance with the ALCA “Code of Ethics and Standards of Practice”, ALCA members promote clients’ rights to self-determination and respect individual context. To honor obligations of autonomy, it is essential health care professionals respect the client/patient as the source of control as well as the client’s/patient’s values and preferences. Decisions made by individuals, or the authorized agents of individuals who lack capacity, should be honored by health care professionals.

ALCA supports:

1. Informed decision-making processes where information is shared between individuals and/or their authorized agents and medical professionals in deciding course of treatment. The process involves distinct components including:
   1. The provider offering information in a way which is understandable to the client/authorized agent.
   2. The provider allowing sufficient time for the client/authorized agent to consult with important parties, review decision making aides, and ask questions, to the extent feasible.
   3. Providers clearly acknowledging the range of possible options, particularly for tests or treatments where there is not just one clearly superior option.
2. The use of decision-aides to help individuals and/or their authorized agents decide course of treatment. Such decision-aides should:
   1. Incorporate a variety of methods to share information respectful of an individual’s abilities, disabilities, language, or culture including written materials, videos, physical models, or interactive presentations.
   2. Be brief, written at the 8th grade level, and accessible to those who are hearing or visually impaired.
   3. Inform the individual about evidence-based care options and their anticipated outcomes, along with the relative burdens, anticipated financial costs, expected benefits, possible side effects, and the provider’s/health care team’s skills and experience for the respective treatment options.
   4. Help facilitate the airing of the individual’s or authorized agents concerns, fears and goals with the appropriate health care professionals.
3. Person-centered processes where decisions about end-of-life care such as sustaining, withdrawing or withholding medical treatment, as well consideration of palliative measures/comfort care, are made on an individualized basis, respectful of advance directives and patient values/preferences, and incorporate the input of all members of the care-giving team including authorized agents, family members, medical providers, and mental health professionals, as well as the individual, as able.
4. The education of the public regarding health care decision-making issues, and the creation of partnerships with allied organizations in order to accomplish this goal.
5. The development and/or use of ethics committees by all health care organizations including hospitals, nursing homes, residential care homes, assisted living facilities, and home and community-based services. ALCA encourages partnering to develop model materials that would be made available to these organizations’ ethics committees.

ALCA advocates: That document(s) which are designed to appoint an agent to make health care decisions in the event of incapacity of the individual be made readily available, easily understandable, and simple to complete with instructions attached.

ALCA encourages: Clients and families to discuss advance care planning, access publicly available advance care planning resources, and consult with health and legal experts if and as needed to complete advance directives.

Publicly available educational materials include:

• https://www.honoringchoices.org/
• https://theconversationproject.org/
• https://www.nia.nih.gov/health/caregiving/advance-care-planning
• https://www.nia.nih.gov/health/getting-your-affairs-order
• https://www.cdc.gov/aging/advancecareplanning/index.htm
• https://www.nhpco.org/patients-and-caregivers/advance-care-planning/

Recommended Books:

• Being Mortal: Medicine and What Matters in the End by Atul Gawande, M.D.
• The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can’t by Viki Kind, MA

Resolution Approved by the NAPGCM Board of Directors October 21, 1999.
Position Paper was reviewed, updated and approved by the Public Policy Committee on December 17, 2007.
Position Paper was reviewed, updated and approved by the Board of Directors on February 2, 2008.
Position Paper was reviewed and updated by the Public Policy Committee, and approved by the Board of Directors on April 30, 2014.
Position Paper was reviewed and updated by the Public Policy Committee 7.13.2021.
Position Paper was reviewed and approved by the ALCA Board of Directors on July 29, 2021