Date: March 31, 2001
For Immediate Release
Contact: Ed Long, (310) 533-1996

FACT SHEET: Your Way - How it Came About

At any given time, approximately 5 percent (1.6 million) of U.S. residents age 65 or older are receiving formal care in a nursing home or hospital. Each year in this country, thousands of incapacitated patients die in medical treatment postures that they did not choose. In many cases, family and friends believe that the patient would not have chosen to receive the care being given. In other cases, family and friends do not know what treatment decisions to make, or they disagree among themselves about what treatment should be provided. Uncertainty, confusion and anguish abound. 

Changes in the health care system intensify the problem. In the past, individuals would get to know their general practice physicians, and often placed great reliance and trust in them. Those days are gone. Long-standing patient-physician relationships are rare. General practice physicians are now “primary care physicians.” End-of-life care is often provided or supervised by physicians who have not previously met the patient (oncologists, cardiologists, pulmonary specialists, intensivists, etc.). 

Who will stand up for the incapacitated patient? We believe that the answer must be a family member or friend of the patient – a person who has personal, advance knowledge of the desires, values and views of the patient.

In February 1998, the Journal of the American Medical Association reported on the Hospitalized Elderly Longitudinal Project (the HELP Study). In the HELP Study, researchers assessed the health values (including treatment preferences) of older hospitalized patients, comparing their values with those of their decision-makers. The Study found that preferences varied greatly and recommended that the patient’s “health values should be ascertained directly from the patient.” The purpose of Your Way is precisely that: to ascertain values directly from the potential patient – and communicate them to an informed and effective decision-maker.

Development of Your Way

1994-95: Almost immediately upon starting his “elder law” practice, Ed Long meets adult children who have had to make end-of-life medical treatment decisions for their parents, and are troubled that they did not know what the proper decisions were. He also finds older adults and families who find it very difficult to discuss treatment and similar issues. He concludes that a new tool is needed to help people figure out their desires about medical care and related views – and communicate with those who will help them. 

In July 1994, Ed started using his first three-page tool with clients in his practice. With input from clients and families, and from local professionals (including Carole Suddaby, R.N., and Glen Komatsu, M.D.) the tool became a 16-page “Workbook for Providing Guidance to Your Agent.” Self-published in 1995, the initial printing encompassed a few hundred copies. Since its inception, the workbook has been given out at consultations, and at classes held for the community.

1996: In 1996, Ed and Pat Long shut down his private elder law practice, to found and work full-time for a new non-profit group called H.E.L.P. (Healthcare and Elder Law Programs Corporation). They donated the workbook to H.E.L.P., which continued and expanded its use.

1996 – 1999: With ongoing use and feedback from clients and others, the workbook evolved and improved. By early 1999, the workbook is in its fifth self-published edition and more than 3,000 copies have been distributed. It is now called “Personal Thoughts About Medical Treatment and Related Values and Views.” It has become very clear that there is a need and demand for what the workbook does. Other elder law attorneys are now purchasing the workbook to use with their clients and clients families. 

It is also clear that the workbook could be more attractive and user-friendly. In Spring 1999, H.E.L.P. organized a task force to review and improve upon the workbook. The members of the Task Force had broad and deep experience with medical treatment decision-making, and with helping families with difficult decisions. Chaired by Ed Long, the thirteen-member Task Force included: 

• a doctor specializing in care for the aging (also Chief of Staff of a local hospital)

• a nurse - attorney dealing with medical treatment decisions and documents at a local hospital

• an individual with ongoing “end of life” experience as a hospice volunteer

• an individual with ongoing nursing home care experience as a Long-Term Care Ombudsman representative

• a local psychiatrist, with a geriatric care specialization

• an individual with professional writing and public advocacy experience

• an estate planning, probate and conservatorship attorney

• the co-chair of bioethics at a local hospital

• a private geriatric care manager

• a nurse with hospice and ongoing older adult experience

• an individual with ongoing professional writing and public information experience, and...

• a critical care nurse, recently admitted to the Bar in California.

The Task Force reviewed the existing workbook and other existing communication tools. It met and worked hundreds of hours over a seven-month period. The efforts of the Task Force were augmented by the input of several prominent California elder law attorneys, including: Stuart Zimring (North Hollywood); Doris Hawks (Los Gatos); Elizabethanne Angevine (Whittier); Donna Bashaw (Laguna Hills).

By December 1999, the Task Force had produced a solid draft of the new tool, called “Your Way: A Guide to Help You Stay in Charge.” The work of the Task Force then went “on hold” – while H.E.L.P. sought the funding to complete, print and distribute Your Way.

The Ahmanson Foundation

In late 1999, Bob Lamkins (a H.E.L.P. Board Member) wrote to Mr. Lee Walcott, managing director of The Ahmanson Foundation. Bob wrote about the work H.E.L.P. was doing to serve older adults and families. In early 2000, Ms. Manya Schaff (Program Officer for The Ahmanson Foundation) followed up on Bob Lamkins’ letter. She attended a H.E.L.P. community class. She visited the H.E.L.P. office. She met with the H.E.L.P. staff. Eventually, H.E.L.P. asked for funding from the Foundation for costs of completing, printing and distributing Your Way. The Ahmanson Foundation responded with a generous grant. After an eight month pause, the Task Force reconvened to provide the finishing touches, and by September 2000 H.E.L.P. had printed and begun distributing copies of Your Way. The grant makes it possible to provide two free copies of Your Way to any requesting household (while supplies last). 

About Your Way

Your Way is a plain-language guide created to help us stay in charge of the medical care we receive, even if we can’t speak for ourselves. Your Way can help any of us:

1. think about what is important to us,

2. obtain wanted medical care and avoid unwanted medical care, 

3. live life the way we choose,

4. help our family and friends know what we want, and

5. help our family and friends do what we want.

Demand for Your Way has been strong, and the reception has been very positive. As of March 31, 2001, more than 6,000 copies of Your Way had been distributed. Assuming that each copy helps at least two people, Your Way has already helped more than 12,000 people. Requests have come from all across the United States, and even Canada. Families and church and other groups have obtained copies of Your Way, so they can work through it together. 

Your Way is available for viewing on the H.E.L.P. web site [www.help4srs.org]. While supplies last, anyone can obtain two free printed copies (limit two free copies per household) of Your Way by: 

• Sending an email message to question@help4srs.org containing your U.S. Postal Service mail address. 

• Mailing a written request to Your Way, H.E.L.P., 1404 Cravens Avenue, Torrance, CA 90501.

• Calling (310) 533-1996 with your request and mailing information.