Who Will Tell the Story?

DSC00528“My hometown of Richmond, Virginia is a city anchored to its past by bronze and marble Confederate shrines of memory, by an undying devotion to the cult of the Lost Cause. I was born and raised in the furrowed, relic-strewn Civil War battle fields on the city’s tattered eastern edge. A captive of its public schools, I was taught official Virginia history from textbooks approved by the First Families of Virginia. But I came to understand the shadowed history of my state by caring for its outcasts.

These lessons began while I was in nursing school. The modern hospital of the Medical College of Virginia curled around the former White House of the Confederacy like a lover. My clinical rotations were nearby in the crumbling brick former colored-only hospital, which then housed indigent and homeless patients, as well as prisoners. Most of these patients were black, so I called it the almost-colored-only hospital. The prisoners, shackled to their beds and accompanied by brown-clad guards, were from the State Penitentiary, located across town. One of my patients was a death-row inmate. When I spoon-fed him his medications, I was simultaneously afraid for my own safety and ashamed of being an accomplice to murder. I knew I was nursing him back to health only to return him to be killed by the state. I wanted to talk to him, ask about his family, about his life in and outside of prison, but the stone-faced armed guard loomed over me. I knew from experience not to discuss my ambivalent feelings with my  nursing instructor. She considered these to be inappropriate topics. I wanted to finish nursing school as fast as I could, so I kept silent.” (pp. 57-58, from my forthcoming medical memoir Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net, Berkeley: She Writes Press, August 9, 2016.)

I was reminded of this passage from my book this past week as I read the NYT article “Who Will Tell the Story of Slavery?” (Lorne Manly, June 29, 2016). Manly describes the (sadly to me, oh so familiar) political dueling going on in my hometown of Richmond over the location of the National Slavery Museum. Former Virginia governor L. Douglas Wilder (our nation’s first elected African-American governor, who was more recently also the Mayor of Richmond (2005-9), wants to establish the museum in the former First African Church (now owned by the Medical College of Virginia/Virginia Commonwealth University and located next to the main hospital I describe above). But the current powers-that-be, including the current Mayor Dwight C. Jones, want to locate such a museum at the historic site of the notorious Lumpkin’s Jail, a former slave prison, dubbed ‘The Devil’s Half-acre,’ the site of which was recently located and excavated. (see the Smithsonian Magazine article “Digging Up the Past at a Richmond Jail,” by Abigail Tucker, March 2009.)

The Richmond indie bookstore, Fountain Bookstore, where I’ll be doing a Catching Homelessness author event (Tuesday October 11, 2016 at 6:30 p.m.), is located a few blocks from the site of the former slave prison in the Shockoe Bottom area of Richmond. Perhaps I’ll include a reading of this section of my book. And not keep silent anymore…

April Fool

April 16th is the fifth annual National Healthcare Decisions Day (NHDD). According to their website, the mission of NHDD is “to inspire, educate & empower the public & providers about the importance of advance care planning. National Healthcare Decisions Day is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.” Nathan Kottkamp, a lawyer who specializes in health care law is the founder and chair of NHDD. In an interview on AARP News, Mr. Kottkamp reports that he launched NHDD in Virginia in 2006 and expanded it nationally in 2008. He chose April 16th, the day after “tax day” because of Ben Franklin’s aphorism “Nothing can be said to be certain except death and taxes.”

Advance medical directives including living wills and health care proxy/agent/power of attorney (who a person wants to make health care decisions for them in case they are incapacitated), are important legal documents recognized (in differing degrees) in all 50 states. At least in theory, having an advance medical directive helps patients have more say in how they die—whether, like the emergency department physician Boris Veysman they want “Shock me, tube me, line me” (Health Affairs, Feb 2010, vol 29(2): 324-326), or like other people they do not want medical procedures that artificially prolong the dying process. And designating a health care proxy—again in theory—helps to avoid unnecessary confusion in health care communication, especially in emergency situations.

I applaud the work of Nathan Kottkamp and others like him to bring greater awareness to the general public about end of life decision making. But as I am currently experiencing, the health care system is not cooperating with sane implementation of the Advance Medical Directives.

Five blocks northeast of Nathan Kottkamp’s law office in Richmond, Virginia is the main hospital of the Virginia Commonwealth University (VCU) health System. My elderly father is now a patient there, after experiencing confusion and shortness of breath at home (from congestive heart failure) and calling the ambulance to take him to see his cardiologist at VCU. Less than two years ago I was with my father in the VCU hospital admission’s office when he was being admitted for possible cardiac surgery. My father had the original copy of his Virginia Advance Medical Directive/Living Will/Appointment of Health Care Agent. My father and I had gone over specific medical procedures—such as resuscitation, mechanical ventilation, and ‘tube’ feeding—with his wonderfully patient and competent primary care physician (who praised my father for having this important conversation and for doing his Living Will).  My father came to VCU hospital fully prepared. His Medical Directive five page document was witnessed/signed by two of the VCU Health Systems hospital admission’s office officials. They made photocopies to give to me and promised the legal document was now part of my father’s hospital medical record. My father named me as his health care agent.

Imagine my surprise yesterday when I was notified by my father’s neighbor that my father had been whisked away to VCU emergency department. But I was even more surprised when I called/talked with a clerk at the VCU ED and was told that to protect patient privacy the nurses/medical staff couldn’t tell me anything about my father—that she wasn’t even supposed to tell me if he was there or not. It did no good when I informed her I was his health care proxy—she said they had no proof of that. He was admitted to the cardiac floor and I was finally able to talk with his nurse (using a special secret HIPAA/patient privacy code—really? The lawyers interpreting HIPAA for hospitals are getting quite creative). She informed me that they had no record of my father’s Medical Directive so he was “full code.” When I told her I had a photocopy of the Medical Directive in front of me and that it was signed by their hospital admission’s department personnel she said, “That doesn’t matter. We get rid of all of that in the medical record and start all over again.” She said that my father should have brought a copy of his Medical Directive to the hospital with him—it was his fault he didn’t have it. I kept expecting her to exclaim “April Fools!” but she didn’t.

So, on April Fools’ Day, I’d like to amend Ben Franklin’s aphorism to proclaim: In this world there is nothing certain except death and taxes and the fact that our US health care system is one crazy-making system…..

(If you haven’t seen/read Atul Gawande’s terrific New Yorker Essay 8-2-10 on end of life decision making ,“Letting Go, What Should Medicine Do When It Can’t Save Your Life?” I highly recommend it. Also see the recent NYT Op-ed piece 3-30-12 “Taking Responsibility for Death” by Susan Jacoby).