Moving Beyond the "Clash of Cultures"

"The perceptions and values of disabled people (particularly disability rights advocates and disabled social scientists) and of many nondisabled people (particularly health care professionals, ethicists, and health policy analysts), regarding virtually the whole range of current health and medical-ethical issues (treatment decision making, health care access and health care rationing, medical cost-containment, and assisted suicide) seem frequently to conflict with one another....Can we bridge the apparent gulf between disabled and nondisabled perspectives?...The perspectives and values of the disability rights community...need to be incorporated into the ongoing debate about medical practice, ethics, and policy."

--Paul Longmore, "Medical Decision Making and People with Disabilities: A Clash of Cultures," J of Law, Medicine and Ethics 23 (1995): 82-87.

Monday, October 25, 2010

Curriculum exercise to clarify values and intolerable states


Kristi L. Kirschner, M.D.
Professor, Clinical Medical Humanities and Bioethics, and PM&R
Northwestern University Feinberg School of Medicine
Attending physician, Schwab Rehabilitation Hospital

Some suggested resources to use:


Bauby JD. The Diving Bell and the Butterfly (either the book or the movie)

Sixty minute Video of ALS survivors (aired after the Death by Doctor segment of Kevorkian euthanizing Thomas Youk); we were able to obtain by writing 60 minutes and purchasing the segment for educational use

Sledz M, Oddy M, Beaumont JG. Psychological adjustment to locked-in syndrome. J Neurol Neurosurg Psychiatry 2007;78:1407-1416

Abrantes-Pais FDN, Friedman JK, Lovalloo WR, Ross ED. Psychological or physiological:  Why are tetraplegic patients content? Neurology 2007;69:261-267

Bruno MA, Pellas F, Schnakers C, Van Eeckhout P, Bernheim J, Pantke KH, Damas F, Faymonville ME, Moonen G, Goldman S, Laureys S. Le Locked-In syndrome: la conscience emmurée blink and you live: The locked-in syndrome. Revue neurologique 2008;164(4):322-335

Bach JR, Tilton MC. Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Arch Phys Med Rehabil 1994;75:626-632

Gerhart KA, Koziol-McLain J, Lowenstein SR, Whiteneck GG. Quality of life following spinal cord injury: knowledge and attitudes of emergency care provide providers. Annals of Emergency Med 1994;23(4):807-812

Longmore P.  Medical Decision Making and People with Disabilities: A Clash of Cultures. Journal of Law, Medicine and Ethics 1995; 23;82-87.

 Asch A. Distracted by disability. Cambridge Quarterly of Healthcare Ethics 1998;77-87.

Albrecht  GL, Devliger PJ. The Disability Paradox: High quality of life against all odds. Social Science Medicine 1999;48; 977-988.

Ubel PA, Loewenstein G, Schwarz N, Smith D.  Misimagining the unimaginable: The Disability Paradox and Health Care Decision Making. Health Psychology 24(4) Supplement, July 2005, 557-562.

Ubel PA, Lowenstein G, Jepson C. Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Quality of Life Research 2003;12:599-607.

Kothari S, Kirschner KL. “Abandoning the Golden Rule:  The Problem with ‘Putting Ourselves in the Patient’s Place.’” Top Stroke Rehabil  2006 13:4; 68-73.

Kirschner KL. “When written advance directives are not enough.” Chapter for Clinics in Geriatric Medicine.  New York:  Elsevier Inc. Emanuel L, special issue editor, 2005; 193-209. (invited; peer reviewed)

Kirschner KL. “Calling it quits:  When patients or proxies request to withdraw or withhold life-sustaining treatment after spinal cord injury,” special ethics issue, Top Spin Cord Inj Rehabil 2008;13(3):30-43.

Kirschner KL. “ Liminal states:  The challenge of new-onset disability,” lead article in Atrium, the Report of the Northwestern Medical Humanities and Bioethics Program, Issue 2,  Winter 2006, pp. 1-3, 6. (invited)

Kirschner KL with Lane G. A New Normal. Atrium, the Report of the Northwestern Medical Humanities and Bioethics Program, Issue 8  Summer 2010; 21-24. (invited)


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