HumaneMedicine

Patients: What Health Care Reform Forgot

by David Biro

All the interested parties [have been consulted] to help him find a solution to the health-care crisis: insurance companies, pharmaceutical companies, hospitals, doctors, lawyers.

But there was one notable absence: the patients, the group supposedly at the center of all these efforts. Wouldn't it make sense to solicit their input on improving the health-care system?

See full Op-Ed piece here: Download Biro Patients  .

Capturing The Brief Life And Death Of An Infant

On Dec. 1, 2009 Joanna Blum gave birth to Baruch Levi in Toronto. He weighed 2 pounds, 11 ounces and  lived about 10 minutes. Photographer Ashley Hutcheson, was there to document his birth.

Blum and Hutcheson talk about their extraordinary meeting to record the life and passing of Baruch Levi Blum.

This remarkable piece was aired on NPR on December 30, 2009.  It relates to Deborah Alecson's fine book, "Lost Lullaby," which we will discuss on January 25th.

Pathography: Patient Narratives of Illness

by Anne H. Hawkins
West J Med. 1999 August; 171(2): 127-129

Article is available as full text online and also as a pdf: Download Pathography - AHH

Introduction

In ever greater numbers, people are writing autobiographical accounts of their experience of illness and treatment, narratives that are often called pathographies or autopathographies.  Increasingly patients are turning to these narratives for anecdotal information about particular illnesses and their treatments, conventional and alternative. Hence the remarkable popularity of such books, many of them bestsellers.
Pathographies not only articulate the hopes, fears, and anxieties so common to sickness, but they also serve as guidebooks to the medical experience itself, shaping a reader's expectations about the course of an illness and its treatment. Pathographies are a veritable gold mine of patient attitudes and assumptions regarding all aspects of illness. These narratives can be especially useful to physicians at a time when they are given less and less time to get to know their patients but are still expected to be aware of their patients' wishes, needs, and fears.

There are some 60 pathographies now in print about breast cancer alone. They describe orthodox treatments from lumpectomy to bone marrow transplant and alternative treatments from orthomolecular therapy to psychic healing. Prostate cancer pathographies are on the increase. In many, authors detail the way they aggressively seek out "the best" urologist and "the best" cancer center. Pathographies about HIV and AIDS are plentiful: an Online Computer Library Center search reveals 31 were in print in 1992, and the number had increased to 74 by 1997.

I have been working on a Pathography Blog for a year or so.  If you are interested in a particular illness narrative you may find it there..