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Advocates Fight for Elder Patients’ Rights, Safety

New America Media, News Feature, Paul Kleyman / Video: Cliff Parker Posted: Dec 21, 2009

California Discharge Planning Collaborative from New America Media on Vimeo.

David Grant was elated to be going home as he phoned a taxi one recent Friday afternoon from the lobby of a San Francisco hospital. But by the time he reached his apartment, he was so weak he could barely make it up the steps and in the door.

For the first time, Grant fully grasped how vulnerable patients can be -- patients like those he has advocated for over the years -- when they are discharged from a medical facility without proper planning and assistance.

Grant and his fellow members of the California Discharge Planning Collaborative recently launched a multicultural campaign to inform elders that they have a right to be safely returned from hospital to home — and not simply discharged with scant help.

The effort is one of numerous projects around the United States aimed at ensuring patients’ safe transition to home care. It could save the more than $17 billion lost to Medicare each year in unnecessary hospital readmissions, according to a study published this year in the New England Journal of Medicine. The University of Colorado study showed that more than one-third of Medicare patients are re-hospitalized within 90 days each year. That’s 4 million people – and this number will grow rapidly as boomers start becoming eligible for Medicare only a year from now.

These findings led members of Congress to introduce the Medicare Transitional Care Act of 2009. According to the bill, “Insufficient communication among older adults, family caregivers and health care providers contribute to poor continuity of care, inadequate management of complex health care needs and preventable hospital admissions.” The Act would set up demonstration projects to test ways for improving patients’ continuity of care.

Discharging Your Rights

"You Have a Right to a Safe Discharge" is a handy brochure now available in English, Spanish, Chinese and Russian from the California Discharge Planning Collaborative. California patients and their caregivers concerned about their transition from a hospital or other medical facilities to their home can obtain free advice at 877-223-6107.

The brochure states that in California, you have the right to

  • A safe and planned discharge
  • Have all material presented in your language
  • Know of all the services you are entitled to
  • Understand what medications you are taking
  • A refill of your hospital prescription
  • Refuse to leave if you do not feel well enough.

For a PDF of the brochure in an available language, contact Planning for Elders at 415-703-0188, or e-mail James Chionsini, info@planningforelders.org.

The California campaign's brochures -- printed so far in English, Spanish, Chinese and Russian -- highlight a toll-free number that patients and their caregivers can call for free assistance if they have complaints about their treatment or discharge from the hospital. The collaborative even enlisted a senior theater troupe to dramatize hospital scenes and spur seniors to share their experiences. The group performs in senior centers and other locations across California.

"When you get home from the hospital, you're not tap dancing up the steps. You're still sick," stated Grant, a consultant for community health organizations and the former director of San Francisco's Senior Action Network. "I'm only 58 and relatively healthy, and I thought, 'What if I were 80 and living alone?'"

Like most people just released from a hospital but still needing to recuperate, Grant arrived home exhausted. After slumping into a chair where he slept for hours, he awoke to a house without food, or enough strength to walk to a store.

Despite having created a computer spread sheet to keep track of his medications, Grant found himself confused: Was this prescription for four pills every six hours and that one for two pills every four hours, or the other way around?

Unlike Grant, though, the most vulnerable and costly patients have serious chronic health conditions, such as congestive heart failure, stroke or diabetes. They also have medical challenges at home. Often these patients or their family caregivers must learn and manage multiple medications and complex technologies, such as glucose monitors or tube feeding -- technologies that have only been available for use in hospitals for 15 or 20 years.

Those needing the most help, such as 61-year-old Anaperla Aureoles, have multiple chronic conditions. This group accounts for a whopping 75 percent of all Medicare spending for seniors and those with disabilities.

Last spring, Aureoles found that poor hospital discharge planning could be "devastating." Only days after her operation to remove a pituitary tumor from her brain, she recovered well enough to be transferred elsewhere.

Aureoles, who immigrated with her family to the United States from Mexico City as a child, was born with a type of encephalitis that has left her struggling progressively with seizures, as well as declining vision, hearing and mobility.

She gets along with the help of her service dog, Henry. However, the hospital erroneously told her that Medicare would not cover her transfer to a rehabilitation facility with her dog. Frightened of being without her beloved canine, she returned to her San Francisco apartment -- with its 32 steps and no elevator.

At home, she said in an interview, she reacted to her post-surgery medication with severe nightmares and hallucinations, couldn't walk, had surgery-related nose bleeds and broke into cold sweats. "I had a terrible reaction. I went into a deep depression and had suicidal thoughts," she said.

The occupational therapist sent to treat her immediately called an ambulance. Although Aureoles was readmitted to the hospital, they sent her home the next morning.

Her surgeons and the hospital social worker then tried to get Aureoles admitted to a rehab facility, only to be reminded that Medicare rules require transfer only from a hospital, not from a patient's home. This technicality is typical of the bureaucratic rules that keep people from getting the seamless continuing care they need.

"The surgery part was wonderful," Aureoles said, "but when I left, everything fell through. I was totally unprepared."

For patients with limited English-language proficiency, the results of a poorly planned medical discharge can be even more challenging. "From Hospital to Home," a 2006 study by the University of California School of Public Health, quoted caregivers who found themselves unable to communicate with health care providers.

One caregiver recalled, "I really wasn't prepared for it, and emotionally I felt terrible because I arrived [in] this country alone with my husband. My two children are in El Salvador, so I felt I had no support from anyone."

Among numerous stories that the California collaborative has documented, a 74-year-old Albanian immigrant, who asked not to be identified, received no translation services following his surgery for stomach cancer. He couldn't communicate with the facility staff, and the hospital did little to assist his family when the staff ordered their father discharged one night.

Only six hours after taking him home, family members rushed him to the hospital's emergency room, where he was readmitted with pneumonia. The man was reconnected to feeding equipment for nourishment. Still, the hospital sent him home hours later -- only to see him returned to the facility the following day, this time for a two-month stay before he could safely return home.

"Successful, programs for assuring a smooth transition from hospital to home must involve the patient's family caregivers -- relatives, friends and neighbors," said Carol Levine, director of Families and Health Care Project at the United Hospital Fund of New York.

Levine said the United Hospital Fund's Next Step in Care program (www.nextstepincare.org) provides family caregivers and health care providers with guidelines for hospital discharge, medication management and other tools for navigating the system.

Although the approaches of the many programs differ, Levine explained, they all turn on the same principles of "meeting the patient and family where they are," not where the health care system wants them to be.

Levine, a MacArthur "genius" grant winner, emphasized that effective transitional care cannot be half-hearted, only offering patient education or volunteer programs.

Key to effective care, she said, is having a professionally guided discharge plan with follow-up through the critical period following hospitalization. That approach can result in better outcomes and fewer unnecessary re-hospitalizations -- and even save money, according to Levine.

Meanwhile, the California Discharge Planning Collaborative is spreading the multilingual word about its toll-free number for free advice on "everything you need to know before you go home from the hospital."

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