expression “It’s always too soon, until it’s too late” is used by many of us in the field. I learned it from Dr. Lachlan Forrow, a palliative care physician and ethicist at Beth Israel Deaconess and Harvard Medical School. The expression may have originated from Dr. Judith Nelson, a critical care and palliative care physician at New York’s Mount Sinai Medical Center, who coined the phrase “It’s too early until it’s too late.”
several sites on the Internet: Advance Directives are available for download from the following sites: Caring Connections: http://www.caringinfo.org/i4a/pages/ index.cfm?pageid=3289 (accessed August 2011); Center for Practical Bioethics: http://practicalbioethics.org/about/model- and-methodology/making-your-wishes- known-for-end-of-life-care/ (accessed August 2011); New York Online Access to Health: http://www.noah-health.org/en/ rights/endoflife/adforms.html (accessed August 2011).
Doctors can help people identify meaningful things they can still accomplish or achieve: There are a number of quality of life tools available to assist with this process: Stiel, S., K. Kues, N. Krumm, L.
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Radbruch, and F. Eisner. “Assessment of Quality of Life in Patients Receiving Palliative Care: Comparison of Measurement Tools and Single Item on Subjective Well- Being.” J Palliat Med 14 (5) (May 2011): 599-606. Hales, S., C. Zimmermann, and
G. Rodin. “The Quality of Dying and Death: A Systematic Review of Measures.” Palliat Med 24 (2) (March 2010): 127- 144. Steinhauser, K. E., E. C. Clipp,
H. B. Bosworth, et al. “Measuring Quality of Life at the End of Life: Validation of the QUAL-E.” Palliat Support Care 2 (1) (March 2004): 3-14. Byock, I. R., and M. P. Merriman. “Measuring Quality of Life for Patients with Terminal Illness: The Missoula-VITAS Quality of Life Index.” Palliat Med 12 (4) (1998): 231-244. Steele, L. L., B. Mills, et al. “The Quality of Life of Hospice Patients: Patient and Provider Perceptions.” Am J Hosp Palliat Care 22 (2) (2005): 95-110. Cohen, S. R., B. M. Mount, et al. “The McGill Quality of Life Questionnaire: A Measure of Quality of Life Appropriate for People with Advanced Disease. A Preliminary Study of Validity and Acceptability.” Palliat Med 9 (3) (1995): 207-219.
7. The Busy Day That Sharon Died
To be of use: “To Be of Use” from Circles on the Water by Marge Piercy, copyright © 1982 by Middlemarch, Inc., used by permission of Alfred A. Knopf, a division of Random House, Inc.
Sharon religiously watched Jeff Corwin’s show on Animal Planet: Jeff Corwin is host of Animal Planet on the Discovery Channel and a leading conservationist. More information at: http://animal .discovery.com/fansites/jeffcorwin/ jeffcorwin.html (accessed August 2011).
8. Fixing Health Care