PROFILE OF PATIENTS RIGHTS AND HOSPITAL REPRESENTATIVES

By the time the next issue was in preparation, CCAHS was being approached by special interest groups to dedicate an issue of Health Perspectives to a topic or subject of their choosing. Selection of what made sense and didn’t was rather simple and clear: If it advocated needed changes to advance consumers, reduce costs and expenses and improve quality, it stood a chance of serious consideration. So our next issue of Health Perspectives profiled patient rights and hospital patient representatives (or advocates).

This publication had an unusual supporter, the Society of Patient Representatives first reorganized as the National Society of Patient Representatives and Consumer Advocacy [NSPRCA] and later in 1997 renamed the Society for Healthcare Consumer Advocacy [SHCA]; each an arm or an affiliate of the American Hospital Association. The local patient representatives approached CCAHS with a “Patients’ Bill of Rights”. The question put to us was, “Would the CCAHS devote an issue to patient advocacy and patient rights?” However, CCAHS consumer board members had reservations. To community based consumers, unaffiliated with medical institutions or professionals, the new patient advocate movement within the establishment was seen as a cooption effort and one that would make patient advocates apologists for their institutional and professional employers. With some reservation CCAHS moved forward and this issue was the outcome of many internal discussions.

The issue covered in text and tables the major driving forces and need for advocates, standards, credentialing and the variety of ways that hospitals (and other providers) could advance patient rights and patient advocates modestly called representatives. Today all that seems to have survived is the placards and bulletin board placement of statements and summaries of the “Patients’ Bill of Rights” due to state level enactments requiring posting of the Bill of Rights prominently in each hospital. In hospital live valuable and meaningful patient represents were replaced by multilingual posters many of which now included a list of patient responsibilities. But this sleight of hand produced a rush of articles and publications stating that hospitals are dangerous, that medical care errors occur too frequently and medical institutions are because of their nature sites which spread disease and cause severe adverse affects including death. Several articles advocated patients to bring family members or knowledgeable friends, who would interpret, confirm and protect patients. Studies done during the 1980-1990 actually documented claims that receipt of medical care was one of the top five leading causes of death in America.

In response some efforts of patient representatives have been aligned with quality assurance. And many independent hospital and professional organizations have sought to counter the arguments of danger and treatment induced illness, disease, injury and deaths.

Patients are the most vulnerable of all minorities. They are stripped, touched, controlled, ordered and subject to follow orders made by people in white and other colored uniforms all of whom have name tags and identification including titles and degrees. In pain, seeking relieve, extension of life and return of independent function, patients are completely dependent on others. And over the years, that dependency has gone from blind faith in the medical care received and those who give it to serious questioning about its efficacy, expense and dangers.

Until the 1930’s most people admitted to hospitals with serious clinical conditions went with the idea that death was soon coming. During and after WW II the hospital became a place to give birth, to be treated, operated on diagnosed and successfully discharged. In the 1980’s hospitalization became a financial risk as dangerous as the reason for admission. By the late 1990’s and early 2000’s, hospitals were the god and devil combined. And as staff cutbacks and technology overwhelmed a system that did not function as such, the need for patient advocates increased. Yet, their role and presence is covered in silence, emptiness and shadows. In sum: there seems not to be many strong effective patient advocates within the medical delivery care institutions and organizations today. Perhaps, CCAHS’s consumer board members knew something that its professionals did not see.