The dilemma faced by families in today’s health care environment when it comes to making end-of-life decisions is captured vividly in a June 24 article in St. Louis, Mo.’s daily online newspaper, STLToday.com. It tells the story of an 89-year-old woman who died two years ago after a six-month decline. The memory of having to decide when to withhold care and let her go still puts knots in the stomachs of her three children.
The woman, Althlee Williams, had midstage Alzheimer’s but was leading a comfortable life when she felt disoriented one morning and was brought to the hospital, an event that marked the beginning of Williams’ protracted decline. Over six months, her family pursued the treatment approach recommended by her doctors and a dozen specialists: CPR (twice), blood transfusions, a feeding tube, a breathing tube and more. The bill for this care — not out of the ordinary these days — approached $1.2 million, all covered by insurance and Medicare.
At each stage, Williams would ask, “What now? Is this going to help?”
“It was not a comfortable or peaceful death,” said one of Williams’ daughters, Teresa Rice Scurlock. “It was just prolonged.”
Like any loving family, the Williamses did not want to lose their mother any sooner than they had to. The care decisions they made, even as their mother fell into a coma, seem only natural to us, even heroic. For most Americans, stopping aggressive care for a loved one comes by another name: giving up.
“Fighting” for a patient by demanding every possible medical treatment, even as prospects for recovery dwindle, can add time to a life, but often at two profound costs: an astronomical medical bill, and final days spent in acute pain or unconsciousness, surrounded by antiseptic, chaotic hospital life.
We listen to doctors, who may see death as a medical failure. We listen to our own anxieties — will we be able to live with ourselves if we don’t do the utmost? And just what is the utmost?
The source we listen to least, it seems, is the patient. As the time of death grows near, people really do know it. Common signs include reports of “seeing” loved ones who have already died, or praying for God to “take” them. Althlee Williams knew it when she asked if her treatments would “help.” The answer was no — they couldn’t possibly. It was her doctors and children who couldn’t see what was before their eyes.
This week’s parasha, Balak, captures well the dilemma of “knowing and not knowing.”
In it, Balak, a Moabite king, hires Balaam, a sorcerer, to put a curse on the Israelite people. In one way, Balaam is a rare, enlightened man, able to hear the word of God louder than he hears his own thoughts. God speaks words through him, invades his dreams and tells him what to do.
But Balaam is far from enlightened in how he treats his donkey. As he rides to fulfill Balak’s order, God stations an angel with a sword before him. The donkey sees the angel and ducks, swerves and finally lies down. Balaam beats her at each turn. Only after the donkey speaks to him, protesting his assault, does God uncover Balaam’s eyes and reveal the angel.
The Talmud, in Sanhedrin 105, says Balaam is like a man with one eye. Chasidic Rebbe Mordechai of Neshkhiz understood this to mean that Balaam had enough vision to see the greatness of God, but not enough to see his own limitations. It’s not enough to know God, to follow God, even to speak God’s words. God’s peace, God’s knowing, must guide our every thought and action.
Much education is needed if Americans are going to shift to a more peaceful understanding of death — and if Medicare is going to stay solvent with the coming of the baby boomers to their final stages of life. In 2011, about 25 percent of all Medicare spending went to pay for the care of patients in their last year of life, according to a study by the Dartmouth Atlas Project. National health care costs approached $2.6 trillion in 2010 — a tenfold increase since 1980, according to the Centers for Medicaid & Medicare Services.
Instead of calling it “giving up,” why not see the decision to stop aggressive care and let a person spend their last days at home as a new kind of heroism or enlightenment, marked by the bravery to reject our doctors’ advice and our own angst, and go with what we know is true.
Instead of the kind of “open eyes” Balaam put up for sale to the highest bidder, we can follow King David’s approach in Psalm 119 (as translated by Nan Merrill): “Open my heart’s eye, that I may see the wondrous blessings of creation.”
Rabbi Avivah W. Erlick owns L.A. Community Chaplaincy Services (lacommunitychaplaincy.com), a referral agency for interfaith chaplains.