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Honoring Final Wishes: How to Respect America’s Choices at the End of Life

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Statement of Richard Grimes, President and CEO, Assisted Living Federation of America
Written Testimony submitted to the Senate Special Committee on Aging

Mr. Chairman,

My name is Richard Grimes, the President and CEO of the Assisted Living Federation of America (www.alfa.org). Thank you for giving us the opportunity to submit testimony on honoring final wishes and respecting individual choices at the end of life.

Nothing is more fundamental than an American’s right to decide where and how to live.   For some aging Americans, the choices can become conscribed because of frailty, ill health and finances.  But poll after poll, study after study, and the personal testimony of thousands of seniors tell us that virtually all want to avoid institutions and remain in home and community settings as they age.

Honoring this choice to remain in a residential setting with privacy, dignity and respect is a core principle of the Assisted Living Federation of America and the professionally managed assisted living communities we serve. The residents of assisted living are frail seniors who need some assistance with the activities of daily living and no longer wish or are able to live in the family home. More than one million residents live in 36,000 assisted living communities in the United States.  They do not need ‘round the clock nursing care. They get the support they need to dress, bathe or take medication in a setting designed to offer an enriching lifestyle with social and physical activities, great dining and many other services.  This philosophy of care embraces choice and independence.

This bedrock principle of choice and independence extends to seniors facing their final days. Americans are living longer and growing older. The average age of an assisted living resident has jumped to 84 for men and 85 for women. Thanks to the supportive services offered in assisted living communities and the tremendous advances in pharmacology, a clear majority of these seniors choose to stay in their assisted living homes until the end of their lives. They want to die as they lived, surrounded by friends and a caring staff and comforted by the familiar.  In response to this consumer wish, hospice care is fast becoming a standard offering by our member assisted living communities.

Assisted Living Federation of America members embrace hospice providers because they also focus on providing care in the home instead of an institution. Last year ALFA collaborated with the National Hospice and Palliative Care Association to develop hospice tool kits for our members. These tool kits serve as a guide for our members to help residents with terminal conditions and their families make informed choices.  Our members work closely with the residents and their families to help them understand and choose the appropriate treatment options. Their decisions are respected and honored. The goal is to ensure a high quality of life for residents even as they near the end of life. Our members work in partnership with hospice providers throughout the nation to make certain that our terminal residents die a comfortable, dignified and natural death surrounded by those who care.

For many years, nursing homes were the only long term care option for many Americans. Although assisted living has become a viable residential alternative for many seniors in the past 30 years as well as the fastest growing long term option in the United States, the laws and regulations of some states prohibit hospice care in assisted living. These same states allow individuals to avail themselves of hospice care in a private home, a nursing home or a hospital. ALFA worked with its members in Tennessee to change an outdated law and is working with its members to change restrictive laws in other states to reflect the choices and lifestyles of older Americans in 2008.

It is not hard to appreciate the important role this service has played at a painful, sad and deeply difficult time for many seniors and their families.  Getting appropriate end-of-life care in a familiar environment without having to go into a hospital has allowed many terminal residents to slip gently into that good night. We thank Senator Whitehouse and the Committee for recognizing the essential humanity and kindness of respecting the choices of each American at the end of life.

The Assisted Living Federation of America is the largest national association serving companies operating professionally managed assisted living communities for seniors. ALFA is the voice for senior living and advocates for informed choice, quality care and accessibility for all Americans needing assistance with long term care.  For more information visit www.alfa.org.