At ACL, we believe that every person has the right to make choices and to control their own decisions. This right is independent of age or disability.
This right also is not diminished by illness. People who have advanced illnesses should have control over their care and services.
For a person with advanced illness to be in control, several things must happen. First, people need to be informed and have the opportunity to express their preferences. Second, service providers must respect those preferences and place individual choices at the center of treatment decisions—whether the decision involves avoiding unwanted treatments or providing services that an individual does want. Service providers should honor the individual’s choices, help manage their symptoms, and provide needed emotional and spiritual supports to them and their families.
This is what stakeholders have been telling us at the Administration for Community Living.
As part of our role as an advocate for the rights of older adults and people of all ages with disabilities, at all stages of life, ACL is exploring ways to support an individual’s choice and control during advanced illness. One of our goals is to help ensure that when a person is very ill, they and their families do not face discrimination based on assumptions about age or disability. We also are promoting the voice of the individuals with advanced illness within policy conversations.
So far, ACL activities and products around care and services during advanced illness include:
- A series of educational fact sheets on advanced illness services, which are targeted to older adults and their families and connect them to useful government resources and information.
- A video guide to advance care planning, designed for older adults
- Support for a collection of resources on advance care planning and end-of-life care, designed for long-term care ombudsman programs
- An ACL internal workgroup on advanced illness to guide this work and coordinate with other HHS agencies.
We are developing a set of principles, reflecting areas of potential consensus among various aging and disability communities about care during advanced illness. We will use these principles to inform future advocacy related to advanced illness among older adults and individuals with disabilities.
We know there are a wide variety of deeply held perspectives on these issues and we are committed to better understanding them and we will consider all of them carefully.
To get there, we have reviewed literature and talked with thought leaders from these communities to get the unique views of their constituents about this topic. We have sought information on what providers and payers should be doing to promote ideal services and supports during serious illness, advance care planning, and for family caregivers.
We also need input from the people we serve—older adults, including people with dementia, people with all types of disabilities, and the families and caregivers who often support them—and the partners who help us do so.
As the principles are developed, we will share them with our stakeholders for feedback. In the meantime, we welcome your thoughts. We invite you to help us continue this sometimes difficult, but critically important, discussion by providing your thoughts to AdvancedIllness@acl.hhs.gov.
We look forward to hearing from you!