And The Band Played On

Ed Raymond

A Reasonable Conclusion: “We Should Have Killed Our Baby”     

For some unfathomable reason some people think they are immortal, that death is not a part of life. Our culture tends to teach us to avoid the topic of death as if it will never come. We really get uncomfortable discussing our options about life and death. But death is also a precious part of life and we should accept it with grace and peace—as well as the difficult and painful parts of both living and dying. My dad lived to be 99 and wanted to continue living when he passed--but realized he was on the short end. There is the old ironic question: “Who wants to live to be 99?” The answer is--those who are 99 want to live to at least 100. That is part of life and death. But sometimes accidents, disease, and genetics interfere with our desires.    The life-or-death story of 11-month-old Charlie Card of London made international headlines last month because of his unusual situation. A victim of a rare genetic disease, Charlie has severe brain damage and is blind, deaf and cannot breathe by himself. The hospital authorities and his doctors wanted to turn off his life support by June 30 because there is no treatment for his condition. He is one of 16 babies in the world with this genetic syndrome. His parents want to take him to the United States where a doctor has offered to treat him. Three English and European courts with jurisdiction have decided in favor of the hospital and have denied the parental petition. One judge has decided to grant a temporary stay so the parents can study a proposal for treatment from two U.S. hospitals utilizing experimental nucleoside therapy. It has provided some relief in mice but it has never been tried on humans. His present doctors say Charlie may be suffering great pain in his present condition. As medical researchers discover new genetic anomalies and treatments, we will certainly face more of these life and death—and very expensive--situations in the future. The case certainly also raises religious, moral, ethical, and legal questions.  

The Story Of Lucy Adds Another Element To The Story Of Life And Death     

A friend of an elderly female named Lucy supplies another factor in the equation of life and death. Linda Acheson Pool of Pittsburgh tells this story: “After a life well-lived, Lucy was injected with a lethal dose of drugs. The drugs were administered by a kind and sensitive doctor, in the familiar surroundings of Lucy’s own home, while she was held and comforted by those who loved her. Her passing was gentle and peaceful, and she deserved no less. Lucy was our beloved golden retriever. In most of America, human beings are denied the option to choose the type of death with compassion and dignity that we routinely afford our pets.”    Linda wrote that description after she had read of the life and death of John Shields, a victim of a rare and incurable disease called amyloidosis which inexorably builds up proteins in the heart and severely damages nerves in the extremities. The pain gets to be intolerable. John wanted to die swiftly and peacefully by lethal injection so he decided to get medical assistance in dying. He also arranged his passing party. First, he wanted an Irish wake for himself, family, and friends with plenty of music, booze, and his favorite meal of chicken legs with gravy. He wanted his wake to take place at his favorite local restaurant.  When the time came he was too weak to go to the restaurant so he had his wake and party in his bedroom. Surrounded by friends and family, he was injected by his physician and died quickly. His physician-assisted suicide was all legal because he was a Toronto resident and Canada had just passed a law allowing it. (For a full description of Shields’s situation and illness, read Catherine Porter’s New York Times article “At His Own Wake, Celebrating Life And The Gift Of Death.” It is a remarkable statement.)  

Is Death “The Ultimate Indignity?”     

Star Tribune columnist D.J. Tice, when writing about the Charlie Card genetic case, described death this way: “Death, the ultimate indignity, is redeemed a little whenever a person is able to decide how to meet the inevitable. Whether to let go at some point, deciding the wholesale medicalization of one’s final days—or to fight to the last, pursuing every possible reprieve.” I must object that it is the ultimate indignity. We are born with dignity so we must die with dignity.    In the United States about three million people of all ages die each year, and almost all die with dignity. Yes, we kill 33,000 a year with firearms, almost 40,000 with vehicles, and over 54,000 with prescription and illegal drugs, and that’s just because we are human-stupid. But most of those lost lived dignified lives and are celebrated at funerals by families and friends. Chimps also grieve but would do worse in these situations than humans because they only have 99.9% of our genes.    In the Eskimo and Inuit cultures of Canada and Alaska it was common in the old days to practice senilicide (killing of elderly), infanticide (killing of babies), and invaldidicide (killing the sick and disabled) when faced with famine because nutritional resources were mostly limited to animals and fish. There are many family stories of elderly members who left the igloo during the night to either freeze to death on the tundra or to be killed quickly and eaten by a polar bear. There are stories of the elderly being placed on icebergs to die during famines but they have never been authenticated. The Unuits even had a form of assisted suicide. They believed in an after-life, so an elderly person during a famine might ask a family member to kill him in order to help save the rest of the group. I would think that would be classified as a very dignified death. With boat motors, snowmobiles, and four wheelers, Eskimos no longer have to be worried about famines. The last recorded case of senilicide was recorded in Canada in 1938.  

Fact: When Doctors Today Decide Nothing More Can Be Done—They Do It Anyway  

   Eighty percent of patients who have been determined to be terminally ill do not want to die in intensive care in hospitals. They want to die at home. So why are patients put through stressful hospitalizations and medical procedures and tests in their final days? There are two big reasons: hospitals can do it and Medicare will pay for it. It’s interesting to note that patients in Boise, Idaho spent 3.9 days of their last six months in hospitals while patients in New York City patients spent 13.7 days. With intensive care rooms costing $12,000 a day and regular hospital rooms running about $10,000 a day, perhaps we need to find a bunch of icebergs.    Despite the fact that more health care doesn’t necessarily prolong life, patients average 29 visits to doctors and hospitals in their last six months. Half of all Medicare patients go to an emergency room in their last month, one-third will be admitted to intensive care, and one-fifth will have surgery—even if 80% want to avoid hospitals at the end of life. Medicare spending in the last year of life takes up one-quarter of the total Medicare budget. In the case of end-of-life care, doctors are no different than the general population in hospitalization and care. Actually we need to use the “death panels” made famous by “From-there-I-can-see-Russia” Sarah Palin. Patients who actively play a role in advance planning for death are less likely to visit doctors and hospitals and receive futile intensive care. Older cancer patients who have participated in a death panel are least likely to die in a hospital.  

How Do You Want To Have A Dignified Death?     

I have been to a lot of funerals in my lifetime. It’s interesting to see how attitudes about death have changed. The New York Times recently asked people how they would like to be dead. Here’s a few fascinating responses: Glenn: “I want to be cremated, squished into a hard ceramic ball and shot from a cannon off a pirate ship into the Gulf of Mexico.” Richard: “I want my ashes to fertilize the roses in the cemetery. Not a bad way to be remembered.” Joanne: “I don’t care what happens to my dead body. It is just a container for my living cells. I hope to donate my body to a medical school. Let someone learn from it.” From USMC54: “For those who live near the ocean I may suggest the deep 6 or Navy burial. Just weigh down the cadaver and drop it in the ocean for the denizens of the deep to enjoy.” There was a strange little piece published in the March Harper’s Magazine by a German writer who emphasized death with dignity in a story concocted by the actions of the band in the Titanic sinking. Supposedly there was a 300-cubic-meter ball of compressed air in the ship’s salon as it sank, allowing the doomed band to continue playing their regular program two hours after the ship’s bow hit the ocean floor. The writer’s conclusion: “The acoustics were such as entertainers rarely enjoy, but the musicians didn’t notice as they played on against hopelessness, played on for the sole reason that any change in their actions would only have increased their disquiet.” So the band played on until death, dignifying it.  

Conclusion:”You Should Have Killed Your Baby”     

As we learn more and more about how genetic abnormalities may affect the lives of many people, we must also learn the harsh realities of coping with the results. The baby Sam was born in an Ames, Iowa hospital with a genetic syndrome called “Trisomy 18,” which means three chromosomes. We only need a healthy pair of chromosomes in each cell. Three chromosomes in a cell are crippling. Although Sam survived well in his mother’s body, he was using oxygen supplied by her all the time. But with trisomy 18 Sam’s brain could not regulate his lungs. He had very little chance of ever breathing on his own.    Over 1,000 babies are born in this country annually with trisomy 18. Most die of heart failure and the inability to breathe on their own. Even with respirators and cardiac machines 30% die in the first month and 90% will die before their first birthday. Signs are that Sam was suffering greatly even on life support, so the decision was made to pull the plugs. But it took a horrifying 30 minutes for Sam to die. The parents later thought they should have had another choice. They said, “Shouldn’t we be allowed the swift humane option afforded the owners of dogs, a lethal dose of painkiller?” Their conclusion: “We should have killed our baby.”