Dr. Robert Kane said his mother's greatest fear was losing her independence. That fear was realized in 1999 when Ruth Kane suffered a stroke at the age of 84 in her Florida condominium. A stepwise decline in health led to her death in a nursing home 3 years later, despite the best efforts of Dr. Kane, an international expert in long-term care, and his sister, Joan C. West, to “get the system to perform the way it should.”
First, there was a brief hospitalization in Florida and a move to a rehabilitation hospital near Ms. West in Long Island, N.Y., where Ruth was able to regain her ability to perform most activities of daily living.
Then, Ruth was moved into an assisted living facility, where she was hospitalized several times for heart failure and her overall physical and mental health began to decline. From there, she was moved into another assisted-living facility in the area known for its special dementia care. Nine months later, she entered a nursing home, where she died after a 3-month stay.
“I was fortunate, on the one hand, because I had a good network of people who could find geriatricians to care for my mother in the various places she was,” said Dr. Kane, who holds the endowed chair in long-term care and aging at the University of Minnesota School of Public Health, Minneapolis. “But that didn't make the care good.” For example, the geriatrician who was caring for her did not necessarily have admitting privileges in the hospital they would take her to when she fell.
Although Dr. Kane and his sister discussed having Ruth move in with one of them when she completed her rehabilitation, they determined that would not work. “The only reasonable approach would have been to set her up in an apartment and bring in 24-hour care,” Dr. Kane said. “She was so hard on people who took care of her that it would have been a constant battle just keeping the roster full.”
Dr. Kane and Ms. West cowrote a book about the frustrations they experienced trying to arrange long-term care for Ruth, called “It Shouldn't Be This Way: The Failure of Long-Term Care” (Nashville, Tenn.: Vanderbilt University Press, 2005). Three key lessons he learned from the ordeal were:
▸ Be wary about whom you trust. “Discharge planners are not your advocates,” he said. “Their job is to move people out of hospitals. If you're looking for a doctor to take care of your mother, I would probably start with the American Geriatrics Society. If you're looking for an assisted-living facility, I would try and find somebody I trust in the area who can tell me where the good places are. I don't think the online resources at the moment are good enough to let you make an informed decision at a distance.”
▸ Choose your battles carefully. It's easy to fall into an unequal negotiating position when arranging for the care of a loved one, even if you know more than the people who are delivering the care. “You can't afford to either antagonize them or to push them to a point where they say, 'We just can't do the job,'” Dr. Kane said.
▸ Assume a leadership role. Dr. Kane said he draws inspiration from the Howard Beale character portrayed by Peter Finch in the 1976 film “Network,” who got people to shout, “I'm mad as hell, and I'm not going to take it anymore!” Physicians “ought to be advocates for major reform in the way health care is delivered, to recognize that we live in a world of chronic disease and that the acute care fixation that we have in our current health care system is never going to do the job,” he said.
To help bring about such reform, Dr. Kane founded Professionals with Personal Experience in Chronic Care, a group of more than 700 physicians, nurses, and other health care workers whose main purpose is to advocate for improvements in the way long-term care is delivered. (For information, visit www.ppecc.org
“We need to begin to get the message out to people that if experts in the field can't make the system work, the system is broken,” he said.
Dr. Jerald Winakur noted that it takes “great effort” to keep his parents (pictured above) at home. “But it can be done.” Courtesy Michael Jay Winakur
Dr. Robert Kane's mother, Ruth, is shown at an assisted living facility with her granddaughter and great grandchildren. Courtesy Dr. Robert Kane