From Medicine To Mercy

From Medicine To Mercy

My 83 year-old mother is starving. She refuses to eat. I see that she's controlling her destiny with the only power she has left, but others see it differently. Her latest doctor at the skilled-nursing home has ordered intravenous lines full of magic nutrients to save her from malnutrition, infection, and unhealed wounds, to save her from a quick heart attack or slow starvation. He's ordered something simple—only IV lines.

My mother knows how to deal with IV lines. Not long ago, she spent a tortured month in the hospital because of a bleeding ulcer. She repeatedly ripping the IV lines from her arms and groin. She tore them out until she developed a blood clot in her right arm. They tied down her arms and put thick mittens on her hands, but she escaped her restraints like Houdini. When she couldn’t break free, she bit the tubes in half. My gentle mother, who never raised her voice or a hand, screamed in protest when they probed her left arm for one more viable vein; she fought and scratched when her surgical dressings were changed.

“They’re just trying to help you, Mom,” I said as I lay across her fragile, flailing body, holding her down so the technician could draw blood.

“They’re doing a lousy job of it,” she shrieked in my ear. Even an Alzheimer’s patient can speak the truth with a body full of adrenaline.

Six weeks ago, a staff member at the senile dementia facility where my mother has been enduring life found Mom passed out on the bathroom floor. She was bleeding internally from an ulcer, moving gently into death. I saw this medical crisis as a blessing, a quick escape from an interminably slow and difficult disease. My mother's mother, my grandmother, existed for more than ten years not knowing her children or her name. She lived like a cornered animal until she finally curled up in a fetal position and starved to death. I don't wish this on my mother, but I don't have a choice. She remarried twenty years ago, and her grieving husband isn't ready to let her go. He rescinded the Do Not Resuscitate order she signed ten years ago, overriding her clear intentions.

Instead of gentle death, Mom endured four weeks in the hospital, transfusion after transfusion, followed by stomach surgery, followed by incessant needles taking blood samples out and putting new blood and nutrients in. Terrified, she struggled against those who were coming at her, forcing and hurting her. Her wild resistance and persistent escape techniques compelled the hospital staff to drug her heavily, but despite the sedatives, she refused to let them touch her without a fight. She refused to eat or drink. Finally, two weeks ago, they discharged her, frail and wild, to a nursing home.

Yesterday afternoon, her husband called to give me a report. “They tried to put a new IV line in your mother, because the doctor says she will die of malnutrition. She's fighting and screaming. They’ve called the hospital to get a special nurse to put it in.”

What? No one mentioned anything about this when I was there two days ago. Tie her down again? Terrify her again? The knot in my gut shrieked, "Absolutely not!" Somehow, I managed to speak to my mother’s husband in calm, measured tones. He agreed to delay intravenous feeding until today when the family could gather to consult with the doctor.

This morning, I woke up to a foot of new snow and closed roads. We're stuck where we are—my brother in Boston, my mother’s husband in Rochester, NY, and me seventy miles southeast of Rochester. Needing to make decisions, we join the doctor in a conference call.

The doctor gives my mom’s case history in rational, detached terms, as doctor’s do: unhealed infected wound from surgery to close a bleeding ulcer, alarmingly low serum albumin levels, severe malnutrition, and dehydration. Then there is the advanced senility and dementia and her combat-ready attitude. She won't let him get close enough to examine her. She bites, scratches, and screams; she rips the stethoscope from his ears. The doctor's calm voice betrays no feeling. I'm struggling to hold back tears, trying to pay attention to the medical details. Finally, he lists tortuous options, each sentencing my mother to months of medical invasion, forced restraint, and fearful struggle against what she sees as an attack from hostile forces.

Bursting with impatient tears, I interrupt and ask, “What would you do if this were your mother?”

There is a long pause. The doctor’s voice deepens. “Sometimes I must speak as a doctor. Sometimes I must speak as a human being. They are not always compatible.” His voice is nearly a whisper. “I would just make her comfortable.”

“We could leave her alone?” I ask.

“Yes,” the doctor says, and the miracle continues, because my mother’s husband agrees, and my brother agrees, and I agree. We are silent, suspended, not quite believing what we are hearing. We wait for someone to change their mind, but no one does. We all take a breath and thank each other profusely, our relieved words spilling out, crashing into each other.

My mother could live a few weeks, perhaps a month. Of course, no one really knows. Sometimes frightened old people regain the will to live if they are left in peace. We'll give her what she's been demanding—quiet, comfort, and love—and we'll let her decide. We'll offer her food and drink and anti-anxiety medication to ease her suffering. No more needles, no more IV lines, and no more surgery. No painful physical therapy to teach her how to walk. No cold toilet seats to force her back to civilization.

Two days later, I drive to the nursing home and find my mother slumped in her wheelchair, studying the snaps on her blue flowered smock. She looks up with bewildered eyes and smiles at me for the first time in six weeks. She is pale and fragile beyond hope, confused, but smiling. I coax her to swallow tiny bites of pureed food and sip chocolate Ensure through a straw. After a few spoonfuls, she begs to go to sleep, and her aides lift her gently into bed. She moans and complains just a little as they move her wounded body. Without fear, she is a sweet baby girl.

I tuck the covers around her and kiss her soft cheek. “I like it here at your house,” she tells me, her bony arm drawing a vague circle in the air. Who knows? Maybe she’ll stay a while.