When We Play God
Many times my wife looked out her hospital window over the cityscape of Philadelphia. And many times, with a sigh, she tearfully said, "The hardest part is knowing that someone has to die if I am going to live."
Theology was woven into her emotions, but she was speaking in practical terms: seventeen years ago she waited for a heart and a kidney transplant. After 18 weeks her body grew weaker. Her faith remained strong, but the clock was ticking on her rapidly deteriorating organs.
At 15 weeks there had been a "false alarm" -- organs that matched in the many essential criteria, including sizes, blood type, and antibodies. But in the very last step, after Nancy had been prepped in the Operating Room, a basically old-fashioned screening prevented the transplant: the donor heart was scarred, probably from silent heart attacks sustained by the late donor, and it was inappropriate for any transplant. Only when held in the surgeons' hands was this determined.
The "matches," though, when they arrived at 18 weeks, were almost perfect. The donor was a healthy woman 10 years Nancy's senior, who had died suddenly of a brain aneurism. We learned afterward that 16 people received organs, tissues, corneas, and other physical blessings from that woman, because she had signed an organ-donation card.
Nancy received her new kidney and heart on, appropriately, Valentine's Day. She died just three weeks short of the 17th anniversary this January, outliving informal prognoses for her "bonus life" by 6 to 12 years.
During the trials of the diagnosis, the process of being "listed" on the transplant registry, the hospital stay, the transplant procedures, recovery, and years of follow-ups (the body never stops trying to reject transplanted organs, so recipients are forever medicated to suppress their immune systems), our entire family learned about the many aspects of transplantation. We stayed abreast of the science. And we started a family ministry on the heart-failure floor of the hospital, for six years holding hands, sharing tears and joys, praying with patients and families and, often, family and friends of patients who "didn't make it" for myriad reasons.
Common questions families and patients confronted us. "Why me?" was a frequent cry, very specifically, at flash-points. "Who are we to play God?" was a very generalized question, sometimes asked when ending life-support was considered for comatose patients; sometimes asked when patients berated themselves for getting hopes raised as TV news reported traffic fatalities.
The response that evolved in our family's hearts was that we -- patients, families, doctors, and sometimes bureaucrats -- we play God more by sustaining lives through artificial, medical, scientific, technological means. A blessing, surely; and we believed that God endows mankind with the intelligence to develop means to lengthen one's days on earth. Mercy-drops 'round us are falling, as the old hymn says.
The hospital where my wife received her new organs was Temple University Hospital. Philadelphia lives in my family's memory, as now in the nation's consciousness, as a place where medical news and medical ethics also live as hot topics. To the west is the abortion mill where Dr. Kermit Gosnell murdered babies; and to the south is Children's Hospital, where 10-year-old Sarah Murnaghan recently received her own lung transplants.
Little Sarah, born with cystic fibrosis, prominently was in the news because a firestorm of publicity attended her fight for life. She grews weaker each day, after being listed for 18 months, the last three in Children's Hospital. The nation's attention intensified. Real concern. Sincere prayers. Publicity campaigns. Political pressure. Bad science.
I have a strong point of view on this issue. I bring a lot of dishes to the picnic as the husband of a transplant recipient, as someone who has kept abreast of issues and breakthroughs, as a minister to recipients and families of donors and recipients. And as a philosophical conservative who has taken great interest in the debates about health care -- ObamaCare and beyond.
In that order of pedigree: spouses and families, perhaps more than the organ recipients themselves, are tempted to fight tooth and nail for their loved ones. To advocate in every way possible. We speak at meetings, we distribute literature and display bumper strips about organ donation. In our case, 17 years ago, we rolled our eyes (so did doctors) when celebrities like Pennsylvania Governor Bob Casey and baseball legend Mickey Mantle received liver transplants only days after being listed. But I can identify with Fran and Janet Murnaghan, parents of Sarah, for wanting to overturn every protocol to prolong their daughter's life.
There have been many breakthroughs and new technologies in the transplantation field since my wife received her heart and kidney. Most patients wait at home instead of being chained to monitors in the hospital. Once-experimental programs (like bone-marrow transplants) are now relatively common. Immune-suppression meds are a bit less brutal on the system. We had a regional program, Gift of Life, that not only provided counsel but helped coordinate the listing of patients, matching of blood types, and so forth. Today, two programs, the Organ Procurement and Transplantation Network (OPTN) and the United Network for Organ Sharing (UNOS), in cooperation with the government when necessary, coordinate the information and data that match organs with recipients.
Bedside prayers and counsel frequently held surprises for us. Many patients and families, despite plentiful information from doctors, held to the conviction that surgeons had magic wands, and could respond to their demands -- not for better breakfast fare but for a perfect organ, and soon. Somehow we often were able to awaken people to the facts that new organs are not delivered as simply as screwing in new light bulbs. The sex of each party, donor and recipient; the age of each party; the body size and weight; sometimes, the ethnic background; blood types; previous illnesses; the existence of multiple antibodies; the health of the recipient -- these and many other factors ranged from negligible to significant. All were essential to the decision to transplant an organ, and frequently had to be evaluated in an excruciatingly short period of time.
Today, as a conservative, I have taken particular interest in health-care debates. More than ever I respect programs like Gift of Life, OPTN, and UNOS, partly because they have melded compassion, science, and efficiency into systems that work medical miracles. They also represent miracles of another sort. They are largely independent associations -- private non-profits -- and are agencies that generally operate based on experience, successes and failures, and professional input.
Whether arbitrary health decisions will be meted out under ObamaCare, by appointed "experts" or faceless bureaucrats; whether the government's decisions would have the power of life and death (termed "death panels" or not); whether politicians can call social policy, like Plan B contraception availability or taxpayer-funded abortions, "health care;" I took refuge in the fact that organ transplantation was one field were professionals and the private sector were working well.
The furor over little Sarah Murnaghan might upset that precious balance. I cannot blame her parents for seeking every chance. Many expectant recipients have waited patiently, trusting in their God and the system that typically seemed fair; and nobody can gainsay the Murnaghans. However, politicians and commentators (many, I regret to say, my usual brethren) have hopped on this issue. I have the feeling that there was more interest in bashing Kathleen Sebelius, Secretary of Health and Human Services, than in rescuing Sarah.
Sec. Sebelius properly resisted calls to intervene, to change the established rules for one patient's case. Private agencies and disinterested experts have established policies that are wise.
The weapons that were formed to argue Sarah's case represented many offensive aspects of contemporary American culture. She is cute; her siblings are photogenic; her pleas are heartfelt; and the scenario became that of melodrama -- and, therefore, medical policies were subordinated to emotions. Sarah's bed in Children's Hospital, and her plight, were 2013's versions of Little Eva on the ice floes from Uncle Tom's Cabin, or Pearl White tied to railroad tracks as the steam engine approaches. On cue, everyone should hiss the villainess Sebelius.
The truth is that when Sarah received lungs, someone else was denied them. That is an unavoidable aspect of transplantation, but in Sarah's case, the argument was that she be allowed to circumvent the system and receive adult lungs. That means an adult -- who, statistically, is far more likely to receive lungs successfully and for a long time -- did not receive them.
For an age-exception to be adopted for Sarah and other children, adult lungs have to be "modified" or downsized so her chest cavity can receive them. A very risky procedure, on top of a very delicate procedure.
Pediatric recipients have far lower success rates than do older patients. Chances are that the recipient Sarah "bumped" was an adolescent -- a group that is likelier to have a healthier prognosis than a 10-year old.
Sarah has cystic fibrosis, reportedly a severe case. This is a hereditary disease with no known cures. In Children's Hospital, another youngster with cystic fibrosis waits for a transplant; his own brother died from CF at age 10, with failing lungs. As with my wife's diabetes (the cause of her lifetime of medical problems), the cystic fibrosis will remain as part of Sarah's physical constitution. In other words, her blessing can be seen as re-setting the meter.
According to the first reports from the happy Murnaghan family, the operation was a success. Sarah will be induced to breathe on her own as soon as possible. Transplanted lungs must not become ossified. Then begins her long journey of managed care, strict regimens, and an array of anti-rejection drugs. My wife used to explain it as "induced AIDS" -- suppression of the immune system so the body will not reject the new organs. At the same time the transplant recipient is susceptible to any disease; even a common cold can become a life-threatening infection. On planes, in malls, at church, the face-mask is a constant accessory. It is even more appropriate with lung transplants.
What also begins now is year-long review of policies regarding children and organ transplantation. All the agencies, the government, and the courts are in agreement on this, although, of course, not on whatever outcome will be offered, or imposed.
What should begin now is a rush of people signing up for donors' lists. To use cold terminology, Sarah's lungs were harvested from a cadaver, probably an accident victim or DNR patient. An average of four people in America die each week, not of transplant complications, but because of the limited supply of lungs targeted for donations. Multiply that by the many transplant possibilities, from kidneys (the most common procedure) on down, or up.
The current controversy would be moot if there were more people who signed simple donation forms or have stickers affixed to drivers' licenses. This is a nation, after all, of nearly a third of a billion people.
But in the meantime, a system has developed that is almost as fragile as a transplant operation itself. Who lives, who dies; what match-factors are safe enough to allow the process to work; how wide the geographical region should be for timely transfers -- these are questions that were addressed through the tests of time and the continuous revisions of science.
God bless Sarah Murnaghan. She has my prayers added to millions of others for a healthy and extended life. And my sympathies are extended to the family of whoever died so two lungs could be transplanted into the 10-year-old's body. I pray also -- I know their anguish -- for the many patients already listed for lung transplantation, who might be feeling that they were bumped in line by press conferences and the Temporary Restraining Order of a US District Court Judge, not a doctor's decision. Any of those patients might receive lungs next week. Or they might die. It is a factor that many lynch-mobs in the media and politics don't always consider.
And it is symptom of a larger disease in America. We have lost a good deal of common sense, and we seem intent on overturning traditional values, largely because they are traditional and speak of values and standards. It is a cultural nihilism.
It is a celebrity culture where, true to Warhol's prediction, everyone will have 15 minutes of fame, of celebrity. Cute kids on cable news will cause reasonable people to suspend their reasonable opinions. Lawyers and judges will overturn any apple-cart, no matter how logically constructed, to respond to the slightest pressure (just as judges habitually overturn cultural norms and popular laws on whims). A parent shedding tears on TV news will trump the grief of numerous parents who cry in silence, are not telegenic, or don't know the publicity game. And politicians willing to bash a bureaucrat over adherence to policies are opening floodgates.
It is hard, these days, to keep the Compassion Police straight one from another.
Once again, prayers of thanks, and for healing, are lifted for little Sarah. But as we face the prospect of transplantation decisions being made by judges, bureaucrats, and outraged politicians in front of cameras, God forbid that the grasping multitudes will be scheming to play God with every medical case that can attract headlines or votes.
Lost in the shuffle will be sick and desperate patients, less certain then ever of their fates.