Joseph Maraachli

Joseph Maraachli, born Jan­u­ary 22, 2010, suf­fers from the Clas­sic Infan­tile form of Sand­hoff dis­ease. The thirteen-​​month-​​old has been in a veg­e­ta­tive state since last fall, has min­i­mal brain func­tion, and will inevitably die some­time within the next two years. Until ear­lier this month, Joseph was being kept alive on a res­pi­ra­tor in a Cana­dian hos­pi­tal in Lon­don, Ontario. On Feb­ru­ary 17, when he devel­oped the need for a tra­cheotomy, his doc­tors decided it would be both cruel and futile to sub­ject him to the surgery, and opted to remove him from the res­pi­ra­tor, an action planned for Feb­ru­ary 21 (in a sad irony, the day is cel­e­brated as “Fam­ily Day” in much of Canada). At that point an Amer­i­can priest and sev­eral “right-​​to-​​life” groups, as well as Fox News, inter­vened at the urg­ing of the child’s par­ents and man­aged to have Joseph relo­cated to Mis­souri, where he had the tra­cheotomy per­formed this week. He will remain under skilled nurs­ing care until his death.

At an early-​​March rally, a man protests the doc­tors’ refusal to per­form a tra­cheotomy on Maraachli’s young son before releas­ing him into his family’s care.

I became aware of this story when it was reported recently at Free Repub­lic, amid much tear­ful rejoic­ing and some gloat­ing tri­umphal­ism over hav­ing defeated the “death panel” that would deprive baby Joseph of his life. Read the first dozen com­ments or so, and you will see how over­joyed the Freep­ers were to hear of this baby’s “rescue.”

Now, I know quite a lot about the peo­ple who posted those com­ments. I’ve fol­lowed them indi­vid­u­ally for years, and I under­stand their polit­i­cal views. They are fierce believ­ers in “cost-cutting”…not just to the sub­cu­ta­neous level…right down to the bone! But do they have any con­cern at all for the cost of surgery for this ter­mi­nally ill, comatose child, fol­lowed by keep­ing him hos­pi­tal­ized on a res­pi­ra­tor for a year (pos­si­bly two years) until his inevitable death?

Appar­ently not.

This per­plexes me. It’s a conun­drum, a true enigma. So I tug at the thread a bit:

  • In 2009, Medicare paid $55 bil­lion for hos­pi­tal and doc­tor bills in the last two months of patients’ lives. From the linked arti­cle: “That’s more than the bud­get for the Depart­ment of Home­land Secu­rity, or the Depart­ment of Edu­ca­tion. And it has been esti­mated that 20 to 30 per­cent of these med­ical expenses may have had no mean­ing­ful impact. Most of the bills are paid for by the fed­eral gov­ern­ment with few or no ques­tions asked.” The most expen­sive city to die in is Man­hat­tan, where your last 6 months will cost you, on aver­age, $35,838; the least expen­sive is Wichita Falls, Texas, at $10,913.
  • More and more older peo­ple are demanding—and receiving—major organ trans­plants, includ­ing heart, lung, liver and kid­ney. “The fastest grow­ing part of our wait­ing list is older peo­ple,” says Wal­ter Gra­ham, exec­u­tive direc­tor of the United Net­work for Organ Shar­ing (UNOS), a Rich­mond, Va. non­profit that oper­ates OPTN under a fed­eral gov­ern­ment con­tract. “At the end of 1989, only a few hun­dred of the roughly 15,750 peo­ple await­ing organ transplants—about one in forty—was 65 or older; 20 years later, more than 17,700 of the nearly 105,600-person wait­ing list—one in six—was at least 65 years old.”
  • Heart surgery, includ­ing bypass, angio­plasty and pace­maker instal­la­tions, has risen sharply in patients over the age of 80 in recent years. “Over the last decade we are doing pro­ce­dures in patients once believed to be too old for these pro­ce­dures,” said chest sur­geon Dr. Mark R. Katlic, of Geisinger Wyoming Val­ley Med­ical Cen­ter in Wilkes-​​Barre, Penn­syl­va­nia. “It’s my belief that this is a pos­i­tive devel­op­ment,” he said, cau­tion­ing that the study didn’t prove the new treat­ment had reduced the num­ber of deaths.
  • And, finally, new can­cer “won­der” drugs are avail­able that pro­long life for a few weeks or months, but cost $100,000 for a course of treat­ment. These drugs are in huge demand, and health insur­ers are increas­ingly pres­sured to pay for them.

All these things cause me to ask two questions.

  1. How can the very group of peo­ple who want to “cut costs to the bone” at the same time jus­tify this vast soci­etal expen­di­ture for mea­sures that will, at best, pro­long an individual’s life by a few months or years? All those costs for the last six months of life… aver­ag­ing about $20,000 a per­son nationwide…are by def­i­n­i­tion futile expen­di­tures since they are, after all, the last six months of life. Yet these “cost-​​cutters” would be the first to scream “death pan­els!” if any­body should sug­gest this money could be bet­ter spent else­where, and that peo­ple should be allowed to die at home or in hos­pice with lim­ited med­ical inter­ven­tion apart from hefty doses of inex­pen­sive mor­phine to ease the pain.
  2. I have no data to sup­port this, but I would guess that the vast major­ity of the cost-​​cutting death-​​panel oppo­nents are also prac­tic­ing Chris­tians. Because I see their obit­u­ar­ies all the time in the paper, I know they believe death takes them to a par­adise of eter­nal joy. So why do they want to fight tooth and nail (and expend vast amounts of national trea­sure) to delay this longed-​​for event as long as humanly and sci­en­tif­i­cally possible…even if that’s just a few months?

I wish some­body could give me the answers.

And to Baby Joseph…I wish you peace, lit­tle one, and an end to your suf­fer­ing, and com­fort for your griev­ing parents.