None of us wants to die, but all of us will. The process can be especially difficult for those with a terminal illness such as cancer. A nonprofit consumer organization, and the national professional organization for doctors who treat many terminal patients, want to change expectations for end-of-life. Both now offer services online to support people in planning and managing their final days.
Closure is a non-profit organization established by the Jewish Healthcare Foundation in Pittsburgh, Pa. Their purpose is "to empower consumers and healthcare professionals with easy-to-access, simple-to-understand information and resources to make educated decisions about end-of-life care." In what they term "community conversations," the program teaches families how to talk with each other and their doctors about what they want — and want to avoid — in their final days. Sessions are held in hospitals, religious centers and neighborhoods around Pittsburgh. Now, through the Closure website, any one can use their resources and tools.
The site includes a "Getting Started" section for patients and families, as well as a section for health care professionals. Resources include:
• Self Assessment: A personalized online survey to pinpoint the most important end-of-life issues and direct users to more information.
• National Resources: Quick links to useful websites and online tools that can broaden knowledge about end-of-life care issues and aid in decision-making.
• Helpful Tools: Important documents and tools for end-of-life planning that can be downloaded and completed.
• Books and Manuals: A listing of books and manuals dealing with end-of-life care issues.
• Useful Terms: An online glossary of important terms and acronyms for patients and families.
The organization is just part of a growing movement toward providing more support to enable patients to make more decisions about the end of their life. The American Society of Clinical Oncology (ASCO) recently began providing a 24-page downloadable guide for patients at their consumer website, http://www.cancer.net/
"Advanced Cancer Care Planning" was developed for those with terminal cancer. The website states, " Incurable does not mean untreatable. People with advanced cancer continue to have options for treatment and can maintain a good quality of life." The guide helps patients and caregivers better understand treatment options, discuss the options throughout the course of the illness and find support for working with the medical team to provide end of life care.
ASCO is also educating the nation's cancer specialists - oncologists - telling them they need to inform patients and families of their options sooner, and in more direct ways. "This is not a 15-minute conversation, and it should not happen in the back of the ambulance on the way to the ICU at 3 in the morning," ASCO chief executive Dr. Allen Lichter told the Associated Press. "When everyone is well and has their wits about them, it's time to start the process."
Resources:
Closure.org: http://www.closure.org/
ASCO: Advanced Cancer Care Planning
http://www.cancer.net/patient/Coping/Advanced+Cancer+Care+Planning
AP: More candor urged in care of dying cancer patients
http://hosted2.ap.org/APDefault/*/Article_2011-02-07-HealthBeat%20End%20of%20Life/id-53a661461c8144fa99483cd0198bdf02