Don't leave the hospital until you know what comes next

Everything initially went well with Barbara Charnes' surgery to fix a troublesome ankle. But after leaving the hospital, the 83-year-old soon found herself in a bad way.

Dazed by a bad response to anesthesia, the Denver resident stopped eating and drinking. Within days, she was dangerously weak, almost entirely immobile and alarmingly apathetic.

"I didn't see a way forward; I thought I was going to die, and I was OK with that," Charnes remembered, thinking back to that awful time more than a year ago.

Her distraught husband didn't know what to do until a longtime friend - a neurologist - insisted that Charnes return to the hospital.

That's the kind of situation medical centers are trying hard to prevent. When hospitals readmit aging patients more often than average, they can face stiff government penalties.

But too often, institutions don't take the reality of seniors' lives adequately into account, making it imperative that patients figure out how to advocate for themselves.

"People tell us over and over, 'I wasn't at all prepared for what happened' and 'My needs weren't anticipated,' " said Mary Naylor, director of the NewCourtland Center for Transitions and Health at the University of Pennsylvania School of Nursing.

It's a mistake to rely on hospital staff to ensure that things go smoothly: Medical centers' interests (efficiency, opening up needed beds, maximizing payments, avoiding penalties) are not necessarily your interests (recovering as well as possible, remaining independent and easing the burden on caregivers).

Instead, you and a family member, friend or caregiver need to be prepared to ask plenty of questions and push for answers.

Here's what doctors, health policy experts, geriatric-care managers, older adults and caregivers recommend:

Start planning now

Planning for a transition home should begin as soon as you're admitted to the hospital, advised Connie McKenzie, who runs Firstat Care Management Services in Fort Lauderdale, Florida.

You may be too ill to do this; have someone you trust ask your physician how long you're likely to be hospitalized and whether you'll be sent home or to rehabilitation afterward.

Ask whether a physical therapist can evaluate you or your loved one at the hospital. (Among the questions that need to be answered are these: Can you get out of bed by yourself? Walk across the room?)

Then discuss what difficulties might arise back home: Will you be able to handle your own bathroom needs? Get dressed? Climb stairs? How can you find the assistance you might require?

Request a consultation with a nutritionist: What kinds of foods will and won't you be able to eat? Does your diet need to change over the short term or the longer term?

Consider where you'll go next. If you or your loved one will need rehabilitation, now is the time to start researching facilities.

Ask a hospital social worker for advice or, if you can afford it, hire a geriatric-care manager (also called an aging life care professional) to walk you through your options.

Before discharge

Don't wait to learn about the care that will be required at home.

Will a wound need to be dressed? A catheter need tending to? What's the best way to do this?

Have a nurse show you, step by step, and then practice in front of her - several times, if that's what it takes.

Ann Williams watched a nurse give her 77-year-old mother a shot of warfarin two years ago after the older woman was hospitalized in Denver for a blood clot. But when it was Williams' turn to give the injection on her own, she panicked.

"I'm not a medical professional; I've only given allergy shots to my cats," she said. Fortunately, Williams found a good instructional video on the internet and watched it over and over.

Ask your doctor to discuss what will happen next: How soon might you or your loved one recover? What should you expect if things are going well? What should you do if things are going poorly? How will you know whether a trip back to the hospital is necessary?

If the doctor or a nurse rushes you, don't be afraid to say, "Please slow down and repeat that" or "Can you be more specific?" or "Can you explain that using simple language?" said Suzanne Mitchell, an assistant professor of family medicine at Boston University's School of Medicine.

Ready to leave

Being discharged from a hospital can be overwhelming.

Make sure you have someone with you to ask questions, take notes and stand up for your interests - especially if you feel unprepared to leave in your current state, said Julie Gray, a care manager with Aging Wisdom in Seattle.

This is the time to go over all the medications you'll be taking at home, if you haven't done so already. Compile a list of all the over-the-counter medications and prescriptions you've been taking.

You'll want to have your physician or a pharmacist go over the entire list to make sure there aren't duplicates or combinations that might cause dangerous interactions. Some hospitals fill new prescriptions before patients go home; take advantage of this service if you can. Or get a list of nearby pharmacies that can fill medication orders.

Find out whether equipment that's been promised has been delivered.

Will there be a hospital bed, a commode or a shower chair at home when you get there? How will you obtain other supplies that might be needed, such as disposable gloves and adult diapers?

A useful checklist can be found at Next Step in Care, a program of the United Hospital Fund.

Will home-health-care nurses be coming to offer a helping hand? If so, has that been scheduled - and when? How often will the nurses come, and for how long? What, exactly, will they and other caregivers do, and what other assistance will you need to arrange on your own? What will your insurance pay for?

Be sure to get contact information (phone numbers, email addresses) for the doctor who took care of you at the hospital, the person who arranged your discharge, a hospital social worker, the medical supply company and the home health-care agency. If something goes wrong, you'll want to know whom to contact.

Don't leave without securing a copy of your medical records and asking the hospital to send those records to your primary-care doctor.

Back at home

Seeing your primary-care doctor within two weeks should be a priority.

"Even if a patient seems to be doing really well, having their doctor lay eyes on them is really important," said Kerry Hildreth, an assistant professor of geriatrics at the University of Colorado School of Medicine.

When you call for an appointment, make sure you explain that you've just been in the hospital.

•Adjust your expectations: Up to one-third of people older than 70, and half of those older than 80, leave the hospital with more disabilities than when they arrived. Sometimes, seniors suffer from anxiety and depression after a traumatic illness; sometimes, they'll experience problems with memory and attention. Returning to normal may take time, or a new normal may need to be established. A physical or occupational therapist can help, but you may have to ask the hospital or a home-health-care agency to arrange these visits. Often, they won't offer.

It took a year for Barbara Charnes to stand up and begin walking after her ankle operation, which was followed by two unexpected hospitalizations and stints in rehabilitation. For all the physical difficulties, the anguish of feeling as though she'd never recover her independence was most difficult.

"I felt that my life, as I had known it, had ended," she said, "but gradually I found my way forward."