The Right to Die at Home

Allowing for home care at the end of a chronic illness is cost-effective and humane—so why doesn’t our health-care system support families who choose it?

03.02.09 6:15 AM ET

The Obama budget is bold about grabbing hold of the tallest beanstalk in the overgrowth of government spending—our soaring health-care costs. But it ignores the hungry giant waiting at the top that devours more than 75 percent of the $2.2 trillion government now spends annually on medical care: the treatment of chronic illness.

That financial drain is invisible and thus unaccounted for in Obama’s otherwise exciting health-care vision.

Who are the chronically ill? It’s your brother with diabetes, your dad with nerve damage from cancer treatment, your mom post-stroke who keeps falling down, or your baby born with profound disabilities. It is estimated that between 90 million and 133 million Americans are living with at least one chronic disease. And those numbers will explode as technologies improve and more of us shoot for living to 100.

Our present health-care system excels at treating acute illnesses in lavishly equipped hospitals with one goal: cure. But chronic illnesses are impervious to cure; people often live with them for years, even decades, being looked after at home by family members with no professional training, no financial support, and rarely any respite.

Forty-four million Americans provide care for an adult who used to be independent, many shocked when they discovered that Medicare does not pay for long-term care.

My own experience in caring for my husband, Clay Felker, taught me the price paid for such care. After beating cancer four times, Clay wanted to spend the long afternoon of his life at home. Treatment had left him with chronic conditions that made it difficult to talk or walk. But his mind was still sharp. He took pleasure in advising his former students, going to plays and concerts and seeing friends—a vibrancy of life we both wanted to maintain in spite of his increasing frailty.

Our health-care system makes it all but impossible to do that without exorbitant cost and effort. Medicare covered Clay’s acute hospitalizations, expensive tests and procedures, and trips to multiple specialists. But what he really needed were the cash benefits to make his life at home possible: nursing visits, a doctor on call, and ongoing physical therapy. Medicare providers will not send a professional to the home to keep such patients out of the hospital because reimbursement is so low.

We both became sick from two years of traumatic trips to the emergency room and abrupt discharges by cost-conscious hospital personnel. On New Year's Day 2007, after waiting in an emergency room for eight hours for a CT scan, I wheeled my husband out of the hospital with the IV needles still in his arms. We vowed it was our last revolving door.

Dr. Sean Morrison, a geriatrician in the pioneering Palliative Care program at Mount Sinai Hospital in New York City, made a house call. He sat at my husband’s bedside, at eye level, and promised to honor Clay’s wishes for this phase of his life.

This is the way most people want to live out their last years, despite chronic limitations—at home, near family and friends, not cycling through teeming emergency rooms or stuck in the sensory deprivation of a hospital bed. They can choose to be medicated, or not. This is palliative care—a return of some control to people during a passage in life that is uncontrollable.

A choice for home care is also a socially responsible choice not to be kept alive with respirators and feeding tubes at staggering expense. Hospitals don’t have much incentive to let people die comfortably at home, not when insurance pays for the heroic efforts at resuscitation that balloon medical costs in the last few months of life.

Properly funded, home care could deliver huge savings to Medicare. But for now it shifts the cost onto people’s personal bank accounts. That financial drain is invisible and thus unaccounted for in Obama’s otherwise exciting health-care vision.

I suspended my work and cared for my husband at home for his last seven months, aided by Dr. Morrison and a privately paid care team, later supplemented by hospice. But most people could never afford this solution. In New York City, the cost of a certified nurse assistant for daily care can run up to $20,000 per month.

More often, untrained family caregivers shoulder the enormous financial and emotional burdens, and can be overwhelmed by them. Eventually, they ignore their own health, give up their jobs, and forfeit their own financial security. Society then loses two for one, and the cycle continues.

“The only way home care works now is through the heroics of family members,” says William A. Dombi, vice president of the National Association for Home Care and Hospice, a trade group.

Middle-class families face stark choices during a grim chapter of their lives. Many chronically ill patients spend down all their savings to become eligible for Medicaid and reluctantly succumb to a nursing home to die. And one dirty little secret is that many affluent families hire clever elder-care attorneys to hide their assets so they can use this social insurance for the poor. Little wonder Medicaid costs are exploding.

The Social Security Caregiver Act of 2007 would assign a wage to family caregivers for each month they provide at least 80 hours of care. But Congress isn’t debating it. Under Obama’s budget proposal, “reimbursement for home health agencies will be less than the cost of delivery of care,” Dombi says. “It will all fall on the family.”

We simply must make it affordable for average American families to do right by their aging loved ones without sacrificing their own future security or health.

Gail Sheehy is an American writer and lecturer, most notable for her books on life and the life cycle. She is also a contributor to the magazine Vanity Fair.