A N   E N Q U I R E R   S P E C I A L   R E P O R T
Extreme Choices

Every day, thousands of parents with severely ill children face decisions most of us cannot imagine.

• As prescription drugs' prices skyrocket, some families choose either to go into debt they can never repay or to go without. Parents cash in retirement plans, burn through savings and sell their homes. Others consider bankruptcy, divorce or quitting their jobs to qualify for government help.

• Advances in medical technology keep severely ill people alive longer, but at huge costs. Some children can be kept alive for years with so little function that even loving parents wonder if it would be better to let them die.

Making it all worse, cash-strapped states are making extreme choices, too — slashing Medicaid and other programs, cutting off families who desperately need help.

This series examines those extreme choices and the families who are making them.



P A R T   1 :   T O U G H   F I N A N C I A L   C H O I C E S

Jennifer Jamison with her son Blake Suffering children,
desperate parents

Thousands of middle-income families are caught between soaring health-care costs and medical miracles that keep very ill people alive. Too rich to get aid and too poor to pay extraordinary costs, some are forced to make choices the rest of us can't comprehend.
Lifesaving drug costs $12,500 a week

"We're discriminated against because we're average Joes who work for a living. We can't get the help (we need) so bad because we get up every morning and go to work."
— Ohio father of a severely disabled boy

Bureaucrats fumble while a family sinks
The Hahns were one of 5,000 Ohio families notified this year of budget cuts in the Bureau for Children with Medical Handicaps. What happened next is a classic example of what working parents go through to get care for their medically fragile children.
View photos of the Hahn family
Melissa Hahn

Too expensive to save?
Health officials bragged this year that they finally got thousands of sick and disabled Ohioans off a waiting list to get state-paid care in their homes. How did they do it? Since 2001, they turned down 73 percent of the 7,088 people who had applied for nursing and other at-home help. Many were parents of severely ill or disabled children who had been waiting for months or years.
The 25 most expensive conditions
Who's responsible?

Dr. Levin Four ideas that could work
Everyone agrees that fixes are needed to help Medicaid bureaucracies, which spent $9.3 billion in tax dollars in Ohio, and $3.8 billion in Kentucky, last year. Here are four ways to improve the system, according to parents, doctors and others.
What would you do?

P A R T   2 :   L I F E   O R   D E A T H   C H O I C E S

Live or let die:
A choice of sorrows

New drugs and technologies are saving more and more tiny babies who once would have died. But while doctors can keep babies alive, they can't always keep them healthy. Thousands of families are sent home from hospitals every year with babies who will never outgrow severe health problems.
Jhanae Swanson

"We asked ourselves, 'If we do resuscitate, are we doing this for us so we don't have the guilt of letting her go? And if we don't, is it for us because we don't want the burden of taking care of her?'"
— Cincinnati parents of a severely disabled child

Chip Ackley with his son Evan Keeping Evan alive, barely
While costly new drugs and surgeries are keeping alive critically ill babies who once would have died, medical advances can't help parents cope with the harsh realities of a child's prolonged illness. Nor can doctors help parents make the ultimate decision: When - or if - they should let their baby die.

Day-care choices difficult for those who need it most
In Greater Cincinnati, exhausted parents searching for day care for their seriously ill children must call two to six months in advance to reserve one of the five available beds at Saint Joseph Home in Sharonville. Officials say it's the only place in the region that will watch over kids so sick that some can't walk, talk or survive without a ventilator.
Four homes with problems

Coming Tuesday
• Dr. Ron Levin helps hundreds make best choices.
• Doctors fear a growing, two-class care system.
• Five things to help you get care.
• Your choice: Are doctors obliged to treat everybody who's sick?

P A R T   3 :   M A K I N G   T H E   B E S T   C H O I C E S

Dr. Levin with patients It takes a fighter
to battle the system

As states and insurance companies make choices about who gets health care and who does not, families need a strong will and a formidable advocate to prevail. For hundreds of families in Greater Cincinnati and Northern Kentucky, that advocate is Dr. Ron Levin at Cincinnati Children's Hospital Medical Center.

"The bureaucracy is just unbelievable. Sometimes I think if you have a medically fragile child, you have to either be a Rockefeller or homeless to get the care you need."
— Dr. Ron Levin

Fewer doctors willing to treat Medicaid patients
The disabled and poor are having an increasingly tough time finding doctors who will take them. Soon, it could get even tougher. Doctors say they can't survive on state Medicaid payments that fail to cover basic costs of seeing patients. Ohio hasn't increased payments to doctors in three years. Kentucky hasn't raised rates since 1993.
Five ways to improve your odds

Tell us what you think
Share your thoughts and comments on these families, their choices, the 3-day series by The Enquirer or what can be done to help.


 
Multimedia
In Their Own Words
Three parents speak out on how their child's situation affects various aspects of their lives. Hear their stories in their own words.
(Requires Flash player)

Listen to these mothers' advice for other families:
Barb Steele
Debbie Martin
Melissa Hahn

Photo Galleries
A Photographer's Journal
Enquirer photographer Michael Keating tells the story of these families through his own words and photos.

The Hahn Family
Melissa and Randy Hahn are dealing with a daughter that has extensive brain damage, epilepsy and a seizure condition.

Your Choice
These situations are hypothetical, yet drawn from real experiences. What would you choose?

You are a physician, free to accept or refuse anyone as a patient. Do you treat someone who has a low-paying job that does not proved health insurance coverage?
You make the choice.

How much care should your critically ill newborn receive?

How do you pay when your insurance runs out?

You're a legislator. Where do you spend the money?

Did You Know?
Ohio hasn't increased its payments to doctors seeing Medicaid patients in three years, but nursing homes get automatic increases every year. It's state law. Nursing home costs increased 31 percent in five years to $2.2 billion, making it the health care program's single biggest expense in 2001.


About this project: For this three-day series, Enquirer Columbus bureau chief Debra Jasper, Columbus reporter Spencer Hunt and photographer Michael E. Keating examined a system in crisis and found dozens of families in pain.

Contact Debra Jasper:
E-mail: djasper@enquirer.com
Or call: 614-224-4640
Contact Spencer Hunt:
E-mail: shunt@enquirer.com
Or call: 614-224-4640
Contact Michael E. Keating:
E-mail: mkeating@enquirer.com
Or call: 513-768-8401

Audio provided by WCPO: Special thanks to Sara Wittmeyer, Stacy Puzo and Eric Dietrich