Like millions of others, Kathy Kenyon is trying as best she can to care for her parents—both of whom have some dementia. The health care system won’t let her.

In a presentation to the prestigious Institute of Medicine a couple of weeks ago, Kathy described in painful detail what is it like to try to navigate the disorganized maze we call health care.

Kathy has enormous advantages over most caregivers. She was general counsel of a major health system so she understands the medical business and is an experienced advocate. She is comfortable with the medical and legal jargon that baffles many caregivers. Her husband is one of the nation’s most knowledgeable long-term care policy analysts. She has a supportive family. And her parents have the financial resources to pay for quality care.

And yet….

Even Kathy (who is a friend), struggles. Like many women who care for their parents, she has had to cut her work hours. In her case, she has scaled back to 80 percent time.

Somehow the medical system that ought to be her ally has become an adversary. A toxic mix of perverse financial incentives and a disfunctional culture drives decisions in the direction of more hospitalizations and more medications though her parents want neither. Rarely, Kathy and so many others find, does the system listen to those who need care.

Kathy’s parents, who are 91 and 87 and have been married for 65 years, have two goals as they age:

They want to be together and they want to maximize their independence and privacy.

And to achieve those goals as best as they can, they are willing to accept a certain level of risk.

For her role as primary caregiver for her parents, Kathy asks three things from the medical system:

  • She wants timely and accurate information about her parents’ medical conditions.
  • She wants honest advice. She does not want to be told what to do. Nor does she want to be ignored.
  • She wants to be supported as she helps her parents navigate their last years.

This all has a name. It is person and family-centered care. Increasingly, doctors and hospital staff know to say the words when prompted. But too often they don’t know what they mean. And when confronted with specific requests from people such as Kathy and her parents, they do not know what to do.

Kathy describes an example of what happens when person-centered care bumps headlong into the reality of the medical system:

Kathy’s mom suffers from a condition called hyponatremia, or low levels of sodium. This can lead to falls, which are extremely dangerous for an 87-year-old.  However, her condition can be managed by regularly testing her sodium levels and with simple treatments such as limiting her liquids and giving her salt tablets.

Except nobody has been able to figure out how to test her mom and get the results to Kathy in enough time for her to treat her mom’s condition before it turns into a full-blown crisis. And when her sodium levels crash, the inevitable result is a trip to the emergency department and, too often, an admission to the hospital.

Recently, it resulted in 7 hours in an ED and four days in an Intensive Care Unit—a bad result for a woman with dementia (to say nothing of being enormously costly).

Kathy’s mom wanted to go home as soon as her sodium levels returned to a safe level. But the docs wanted her to stay. This resulted in a testy debate and, eventually, an email to Kathy from a doctor who was “very surprised that you acceded to her wishes to leave the hospital.”

This, of course, is exactly the problem—a doctor who is surprised that a daughter would want to accommodate her mother’s wish to go home.

Kathy told the IOM, “My parents want to live as meaningfully and as well as possible…Healthcare organizations and professionals need to do a better job of understanding my parents’ wishes as they age and my role in making certain those wishes are understood and respected.”

Perhaps the IOM can help convince the health system that this is not a lot to ask. Until it does, even someone like Kathy is fighting a constant uphill battle. And if she has to struggle to make the medical system work for her parents, where does that leave the rest of us?