Making decision to allow child to die in comfort of her home, amidst chaos

January 8, 2010

Upon entering the cancer patient's home, it was clear that this dying girl's family lived and breathed--existed--solely to take care of her.

I had expected something very different, more like the clean dignity of the sleek hospital room where I had first met her. The only reminder of anything remotely hospital-like was the young girl's bed, which everything else in the cramped row house seemed to orbit around; piles of junk, heaps of clothes, empty plates, and discarded food wrappers all radiated outward from the nucleus of her bed.

Like a forensic detective, I could recreate the recent activities of her family members from the location of the various objects. It was clear that her family lived and breathed-existed-solely to take care of her.

More carefully this time, I navigated the piles of clothing and stacks of empty shipping cartons and advanced toward the young girl. Despite the surrounding clutter, she was tucked neatly into her bed.

Several weeks before, when I had first met her in the hospital, I had constructed a very different vision of her last days. Surrounded by whirring machines and under the constant supervision of the staff, somehow the small girl's situation did not seem so hopelessly final. She was a child with cancer, but she was receiving chemotherapy and fighting the fight. While she lay nestled beneath the crisp sheets of her hospital bed, her medications were constantly titrated to achieve their desired effects. Everything was controlled and calculated, as if to reduce the frenzy associated with the uncertainty of looming death.

During her stay in the hospital, I had watched as she lost each of her bodily functions over the course of several weeks. When it became clear that she would die within a short time, her family insisted on taking her home to the comfort of her own bed. The vigor with which her medications had been adjusted and tinkered with (sometimes to the microgram) was suddenly shifted toward this new goal. Now everything was focused on getting her home.

Her mother, her brother, and her father, all aware of the overwhelming amount of work it had required to care for her at home before her final hospital admission, refused to have it any other way.

For someone just barely acclimatized to the controlled environment of death in the hospital-the only place where I had really ever known death to occur-the chaos of the girl's home shocked me. The first thought that crossed my mind was: How the hell did we let this happen?