Still clutching my wad of soggy Kleenex, I sit in the empty overflow ward of the emergency room while Patrick's body is prepared for the coroner. I stare silently at the row of vacant beds until the flamboyant social worker with the bad wig returns. There is one final piece of business he must attend to.
"Have you given any thought to the possibility of organ or tissue donation?" he inquires. "You don't have to decide at this moment."
Early the next morning I receive the promised telephone call from the One Legacy Organization, the designated organ-procurement organization (OPO) for Southern California. The male voice on the other end of the line expresses condolences on the loss of my partner of 25 years, and I affirm my willingness to participate.
"In that case," he continues, "there is a series of questions I must ask to determine if he is a suitable donor. This will take some time."
"Okay," I reply. I inhale, waiting for the first question.
"Did the deceased, at any time in the last five years, have sexual relations with a man?"
My breathing stops. I am stunned. Speechless. But bubbling up from a deep well of grief and loss, my fury quickly rises to the surface. I do not need to think about this question; my reaction is swift and sharp.
"You're talking about my life partner. I cannot believe you would ask me that question."
"These are standard questions we have to ask--"
I cut him off mid-sentence. "If you want to ask me if he was HIV-positive, I'm fine with that. But in my situation, I cannot believe any thinking human being would ask that question. This conversation is over. Do not ever call me again," I shout, before slamming down the receiver.
Then the simmering begins. I will return to this moment. But it will take three months before I possess the emotional wherewithal to start making telephone calls. I begin at the top.
The United Network for Organ Sharing (UNOS) in Virginia maintains the national database of organ donors and patients awaiting transplants. Their public relations manager, Anne Paschke, is helpful and informative. She explains that UNOS provides public information and education as well as serving as a clearing house for the many OPOs across the country. OPOs like One Legacy in Southern California are nonprofits; they harvest the organs.
"We try not to use the word 'harvest,'" Paschke demurs. "Some people are uncomfortable with that term. We prefer the word 'procure.'"
Organ allocation policies are national, but there are regional variances based on population density. Rates of organ donation also vary from state to state. New York City has one of the lowest donor rates; Utah has one of the highest. The procurement of cadaver tissue and other body parts is not governed by UNOS; it deals only with organs. UNOS does not compile the questions OPOs ask of survivors, but Paschke is aware that a medical and social history must be obtained for any potential donor.
Elena de la Cruz, who handles media relations for One Legacy in Los Angeles, informs me that "only 1 percent of potential organ donors actually qualify. Timing and personal history impact this." But organ donation is only one of the things OPOs procure. Tissue donation is the other. The "tissue" in these situations includes corneas, skin, bone, tendons, and heart valves taken from the deceased.
Since 2006, whenever you apply for a California driver's license, you will be asked if you would like to sign up as a potential organ/tissue donor. If you answer in the affirmative, you give "first-person consent," and your name is placed on the state donor registry. Only a medical history -- not consent -- will be required when you die. There are now over 10 million names on the California registry of potential organ/tissue donors.
De La Cruz explains:
There is no waiting list for tissue, and we are able to supply the demand. We recover the tissue, but we provide it to tissue banks. It needs to be cleaned. The tissue banks work with orthopedic surgeons and other practitioners. The window for tissue recovery is much longer, because tissue is not as dependent on blood or oxygen flow. We can recover tissue within 12 hours after death, and bone up to 24 hours later. Bone can be stored for three to five years. Each state has a registry for both tissue and organs.
Tissue donations can go to for-profit operators or nonprofit operators. One Legacy places tissue as it sees fit. If a donor on the state registry wishes to limit tissue donation to a nonprofit, he must find his name on the Donate Life California website and add this special restriction. Consent granted at the DMV is considered to be general; it allows both nonprofit and for-profit tissue donations.
As I move toward the series of questions asked of surviving family members, de la Cruz grows more uncertain in her knowledge. "I don't really have answers in that area, but I can refer you to our Vice President of Communications, Brian Stewart. He should be able to help you."
The return call from Stewart comes promptly. On the issue of questions asked survivors, he explains, "The questions are based on male vs. female descendents. There are two separate lists, depending on the sex of the deceased. Marital status has nothing to do with the questions."
Regarding the question that was asked of me three months earlier, Stewart opines, "The question is geared toward assessing HIV exposure."
"Then why don't you just ask that question?"
"Well, the window of exposure cannot necessarily be determined in tests. There could be a recent infection without knowledge."
"And what additional useful information would you get by asking me if my partner had 'at any time in the last five years had sexual relations with a man'? How does that take you any closer to eliciting facts regarding recent, undetected exposure? "
Stewart can't answer that question, and for good reason. If HIV exposure first took place in the two weeks preceding death, it would be impossible for any question or test to reveal that truth due to the time lag between exposure and seroconversion.
"We're required to ask that question in that way because of CDC guidelines," Stewart continues. But that assertion is false. "We are required to ask if the deceased engaged in high-risk behavior," he adds, refining his point. "There is no margin for error in our work. We can't run the risk of passing on any infection to a recipient."
That is the company line at One Legacy.
According to the Centers for Disease Control, it remains true that men who have sex with men represent the highest percentage of new HIV cases. But how many surviving spouses can discuss, with any degree of certainty, what their partner's sexual behavior outside the relationship may have been? It would seem this sort of thing is more frequently concealed than revealed. Yet most men in same-sex couples do know the HIV status of their partner.
The Centers for Disease control does not provide the questions to be asked of survivors in order to elicit a medical and social history. And there is no standardization of questions used by the different OPOs across the country. One Legacy's Brian Stewart says he is unaware of any instance in which question lists have been shared or cross-referenced between OPOs for effectiveness. Yet in the era of same-sex marriage, when you ask a surviving male partner if his late husband has had sex with a man in the last five years, you are engaged in the kind of interrogatory that most recalls Saturday Night Live skits. But it is not one of their funny sketches. It is instead one that falls flat because the writer has lost sight of the fundamental humanity beneath the setup.
This is 2013, not 1983. It may be time to rethink the way business is done in the dead zone.