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Fight for yourself at the hospital

It's important for patients to learn how to advocate for themselves, especially before leaving the hospital.
Try to avoid readmission

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, to the spring of 2015.

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 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.

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

Planning for a transition home should begin as soon as you’re admitted to the hospital, advised Connie McKenzie, who runs Firstat RN Care Management Services in Fort Lauderdale, Fla. You may be too ill to do this, so 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 if a physical therapist can evaluate you at the hospital. Then discuss what difficulties might arise back home. Will you be able to handle your own bathroom needs? Get dressed? Climb stairs? What kind of assistance will you 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 longer term?

Consider where you’ll go next. If you are going to 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 (now called aging life care professionals) to walk you through your options.

Before discharged

Don’t wait to learn about the kind of 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 let you practice in front of her — several times.

Ann Williams watched a nurse give her 77-year-old mother a shot of Warfarin two years ago after being hospitalized for a dangerous 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. Williams found a good instructional video on the Internet.

Make sure you ask your doctor to sit down and walk you through what will happen next. How soon might you recover? What should you expect if things are going well? What should you do if things are going poorly? How will you know if 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 Dr. Suzanne Mitchell, an assistant professor of family medicine at Boston University’s School of Medicine.

Getting Ready To Leave

Being discharged from a hospital can be overwhelming. Make sure you have someone with you to ask questions and stand up for your interests, especially if you feel unprepared to leave the hospital, said Jullie Gray, a care manager with Aging Wisdom in Seattle.

This is the time to go over medications you’ll be taking at home. Bring in a complete list of all the prescriptions and over-the-counter medications you’ve been taking. You’ll want to have your physician or a pharmacist go over it to make sure there aren’t duplicates or possibly dangerous interactions.

Find out if 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 or 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?

Be sure to get contact information (phone numbers, cell phone numbers, e-mail 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 agency. If something goes wrong, you’ll want to know who to contact.

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