Publications
APS Bulletin • Volume 14, Number 2, 2004
Web Site Reviews
Michael E. Clark, PhD, Department Editor
Organization: LastChapters
Reviewed by Stuart Derbyshire, PhD
Site Audience
This site is primarily for those with terminal illness and their immediate family members and friends. There also is information relevant to those living with life-limiting chronic illnesses that may not be immediately life threatening. The help section of the site describes the site as being for people dealing with pain; people dealing with financial duress; parents whose children are dying; people who manage to continue living in a fruitful and energetic manner despite a terminal illness; people who have found spiritual insight at the end of their life; and families who have learned how to grieve and move on with their lives.
Content Appraisal
Visitors are encouraged to treat the site as a refuge or a source of solace. The color scheme is soft, the words are soothing, and the pictures show people looking somewhat melancholic or wistful. There is a tendency to “ooze” into the home page, which describes the sections of LastChapters: “Share, where you can experience other’s stories or tell your own,” “Learn, where you can find resources relating to caregiving, coping, grief, and more,” and “Act, in which you can add your voice for advocacy for better end-of-life care.” The “Sharing” section features links to stories from people who have been through grief or are facing chronic illness or the illness of a loved one, practical discussions including an advance directives conversation, and forums for open discussion. This latter part of the site heavily features discussions of dying, and goes lighter on discussions of pain. The “Learning” section consists of a bibliography, mostly featuring books on death and dying, and a “Links” section that directs visitors to sites about many aspects of health, grief, dying, and pain (the American Pain Foundation and APS Web sites are included here). The “Action” section includes material on advocacy.
Visitors are encouraged to speak out and get involved with local hospitals and the broader community. There also is a section that describes how to complete a “Life Review” to take stock of one’s own story at the end of life. A help section includes technical information on the multimedia that will have tried to install itself as you surfed through the site, and credits the organization, Partnerships for Caring, as conceiving the site, and overseeing its operations.
Many of the stories on this site are gut wrenching, such as “Life with Sarah,” which describes the mental and physical deterioration of a young child with metachromatic leukodystrophy. Sarah has to be strapped into her wheelchair because she lacks the trunk strength to sit up on her own. She needs to be held while in the tub and can’t sit up in the car. Sarah is just 9 years old, and her parents have to plan her funeral, fight insurance companies for medical equipment, and consider whether it would be better to insert a feeding tube or simply allow the inevitable to happen.
Navigation/Ease of Use
This site is exceptionally well designed. Clearly, the designer put considerable thought into who would be viewing this site and what their state of mind was likely to be when they arrived there. It is extremely gentle on the senses. The home page is organized simply and effectively with pictures to the left and didactic description of the site and its general purpose to the right. My only niggle is that when you click on the sections, nothing happens. Further menus are automatically revealed below each sction name; these are clickable.
Recommendations
I am grateful that I visited this site merely for the purposes of writing a review. Those who have a more pressing need to visit are likely to find some comfort and strength within its pages.
Reviewer content represents the opinion of the reviewer, not APS.
Please direct your comments or suggestions for future Web Site Reviews to Michael E. Clark, PhD, Department Editor, at michaeleclark2@msn.com