In discussions about health care for vulnerable Americans, "I’m on both sides of the equation," says nurse Leslie Schlienger of South Florida. "I’m a health care worker, and would never bash the good and caring people who do this work. But I’m also a human being who has family and friends with medical needs — and unfortunately, I see people becoming more and more overwhelmed by the magnitude of managing their own health care."
Since graduating from nursing school in 1980, Leslie has been a head nurse in Veteran’s Administration and community hospitals, earned her certification in rehabilitation nursing and her master’s degree in nursing administration. For the last dozen years she’s been a home health nurse, and a critical part of her work is coordinating clients’ care with family, friends and medical professionals.
"The fragmentation of how care is delivered is a big issue," Leslie says. "Because of all the specialties, a single patient often has two or three physicians, and I’ve seen some with as many as seven or eight. Patients are overwhelmed by that. They’re lost in that system."
Though patients may assume that their primary care physician will coordinate care with their many other practitioners, Leslie considers that "very naive. In my experience, your primary care physician will coordinate your lab work and ordering your prescriptions and sending you to someone else. And a really involved and knowledgeable physician may pick up the phone and call that someone else and discuss outcomes as a colleague — 'What do you think we’re going to do for this patient?' — that happens regularly among physicians. What doesn’t happen is the day-to-day communication where the rubber meets the road.
"Take the simple scenario of the average 78-year-old man being discharged from the hospital. He’s still functional in his home environment, but he’s also a creature of habit and he may have memory impairment. Someone — the nurse, probably — is going to go into the hospital room, talk to him about using his walker at home, and give him prescriptions for new medications.
"At that point, somebody also needs to ask the questions, 'Do you have medications at home? How will you get these new prescriptions filled? Who will take the time to go to the store for you? And once you get home and have six new medications in addition to the 10 old ones, who’s going to be sure you discard the old ones and only take the new ones?' Many times at discharge, nobody actually asks all those questions — and part of the reason is, no one has an answer if the patient says, 'I don’t know who will help me get these prescriptions filled, I guess I’ll call my neighbor.' We may write on the discharge papers, Neighbor will fill prescriptions, but we don’t really know that. We don’t even know if the neighbor is in town that week.
"After the discharge, the actual trip home from the hospital is exhausting, it wipes the patient out. He’s probably not going to eat well or drink enough right when he gets home, especially if he lives alone. He may go 2-3 days until he gets the new prescriptions filled. And right there, you’ve lost ground."
If anyone is coordinating care for such patients, "I’d say by and large it’s the daughter, or possibly the son," Leslie says. But often, she says, both family caregivers and professional caregivers like her must struggle to manage care without timely access to the patient’s medical information.
"In a perfect world," she says, "there would be ready access to medical information through technology for the people who need to know, so they can make good decisions. But counter to that is all the struggles we have with protecting people’s privacy, security and safety. So what happens is, health care personnel never know who they’re supposed to talk to and not talk to, and they make you jump through hoops to get good medical information." She recently cared for a patient, just out of the hospital, who became dangerously dehydrated in the time in took caregivers to get his various doctors’ offices to talk with each other and coordinate care.
"It would be easy to blame the doctors," Leslie says, "but I think the doctor is as much a victim in the system as anybody else is. For the most part, doctors want to do the right thing — every person wants to do the right thing. But the whole system is constructed to not allow for communication."
The lack of effective care hits older patients especially hard, Leslie says, because they are least able to fend for themselves and have placed so much faith in their doctors and the medical establishment. "If you think about a person who’s 90 years old, they were 15 years old 75 years ago," she notes. "They have real impressions of doctors that make house calls, and they equate time and presence with caring. They want to be cared for, that’s what they want. And in today’s health care system, they’re very often set up for failure."