If only Suzanne had known.
If only she’d known that the first back surgery would lead to more. If only she’d known that the second knee replacement wouldn’t go as well as the first. If only she’d known that one of her surgeries would be followed by a stroke.
Even if she had known all these things, Suzanne says she might not have done anything differently—but the knowing would have helped her deal with it better. While her experiences might not have been predictable, she wishes her doctors had at least considered the possibilities and informed her of them.
“One of the things the doctors might not tell you is that when you have spinal fusion, the discs above and below may also go at some point,” Suzanne says. The 74-year-old, who lives in Hood River, Oregon, has since had her entire lumbar spine fused, and had several fusions in her cervical spine as well. “I was in so much pain before that first surgery, I had to do it, but I just wish I’d known that wasn’t going to be the only one,” she says.
Suzanne ran into the same problem with her knees. This past February, she had a knee replaced. “I did not have to walk with a cane, and I didn’t have much pain,” she says, “but my knee would give out once in a while. The doctor told me I needed surgery, and that it was bone-on-bone.” She’d had her other knee replaced 15 years earlier, and recuperated with no problems—but it did require a revision seven years later. That, she says, should have been a wake-up call that a second knee replacement might not go smoothly, especially given that she was that much older than when she underwent the procedure for the first time.
In fact, it almost couldn’t have gone worse. Suzanne had a stroke the day after the surgery. She ended up staying in the hospital for 19 days, instead of the five she’d originally planned for. The stroke caused no paralysis, but resulted in immediate cognitive issues. These resolved before she left the hospital, but she now can’t straighten out her new knee, and walks with a cane. “My doctor thinks that’s because of the stroke, but he didn’t really explain why, and I’m not sure I agree with that,” she says.
The heart of the problem, Suzanne says—and likely most doctors and patients would agree—is that doctors are just too busy to provide the kind of care they and their patients want. “Most doctors have your best interests at heart,” she says, “but they have such a patient load—you can tell. My niece is a doctor, and she has to see a new patient every 15 minutes. So they can’t take the time they need to with their patients.” In her experience, the care patients receive suffers as a result.
When it comes to medical treatment, Madeleine has seen—or rather, heard—it all. The 84-year-old Seattle resident retired 12 years ago from a 17-year career as a medical transcriptionist, working on everything from radiology to emergency-room cases.
“I have a lot of empathy for doctors because I heard what they’re dealing with on a day-to-day basis,” she says. “Not only do they have to see so many patients, but not everyone is a good communicator.” That goes for doctors and patients alike, she says, adding, “Some doctors can’t put a sentence together…and some patients aren’t articulate enough to explain their problems.” This leads to a big communication breakdown, in her opinion—which is only compounded when doctors are rushed.
The irony is that despite Madeleine’s understanding, medical vocabulary, and ability to communicate well—she even goes to doctor visits with written notes—she currently feels talked down-to about her own medical problem—lower-back pain, exacerbated by years of using a foot pedal on a transcription machine. “I’m on their side and speak their lingo, so—please, talk to me as if I have a brain,” she says.
Madeleine was pleased with her long-time doctor, who recently retired. The same doctor treated Madeleine’s mother until she died, so he had a long history with the family. When Madeleine first came to him about her back issue, he was honest, she says. “He told me, ‘I hope we can help you.’” She appreciated that he didn’t sugarcoat the possibility that he couldn’t.
“My back [which suffers from severe stenosis of the lumbar spine and severe arthritis] can’t be fixed with surgery, and I wouldn’t want to have surgery at my age anyway,” she says.
“But getting pain relief is a big taboo.” Taking over-the-counter pain relievers gave her a bleeding ulcer, and she’s still trying to figure out how to manage her pain. She’s not wild about her new doctor, either. “He’s hard to understand, and I can understand doctors—that was my job,” she says. If he listened to her, “I think we could have a mutually beneficial relationship,” she says. “We’ll see how this goes, but building a rapport with someone takes years.”
They’re not off to a great start. When she did some initial routine lab work with him, he never called her back with the results, even though he said he would. She wasn’t happy about it, but she’s trying to cut him some slack. “He’s taking over this huge practice, and he’s probably really stressed,” she says. “I finally called and got the results from one of his physician’s assistants.”
Hurried care and poor communication results in more than just annoyed, dissatisfied patients—it can jeopardize their lives. Sharon, a 71-year-old in Spokane, Washington, had been in good health for most of her life. The care she received from doctors when she gave birth to her six children was excellent. “Obstetricians always treated me like a person, with respect,” she says.
Sharon, too, was exposed to the medical profession through her career, as a technician who took care of ventilators in the respiratory department of a hospital.
Which was a good thing, because when she had a medical emergency 10 years ago while at work, she was able to walk herself down to the ER. Her blood pressure skyrocketed to 200 in 20 minutes, and she almost had a stroke. She later learned she was having a “thyroid storm,” which is a life-threatening complication of Grave’s disease, with which she was later diagnosed. But at the time, the ER doctors put her on medication to treat high blood pressure, and sent her home.
It took months before she was correctly diagnosed, and along the way her records were mixed up with those of another patient who had Hashimoto's disease, an autoimmune disorder that destroys the thyroid gland. At one point, a doctor thought she might have kidney cancer.
Finally, a friend of Sharon’s, who was a cardiac nurse—someone who took the time to listen to her and observe her symptoms—decided that something was amiss. Sharon was experiencing temperature sensitivity, a racing heart, and pressure behind the eyes so severe they protruded. Her friend brought her to a new doctor, who correctly diagnosed her.
Still, it took another two years of monthly visits, blood work, and side effects before Sharon was put on the correct medication.
She’s been in remission for the past four years, but goes to her doctor for yearly visits. “I’m seeing a wonderful doctor now,” she says. “She takes that extra time to talk to me like I’m a person, not just someone you’re pushing through the system.”
RESPECT YOUR ELDERS
Joni is a 77-year-old former neurology nurse in Boise, Idaho. “I would love to complain about my care, but I’m not the easiest to deal with,” she says. “I give doctors a hard time, or else they think they’re gods. They don’t give you credit for knowing anything, not at all. Once your hair turns gray, you’re invisible. You’re one of those old people.”
But, as she says, “This is my life we’re talking about,” so she speaks up—loud and clear—about the care she wants for her undifferentiated connective-tissue disease, an autoimmune disorder in which the body mistakenly attacks its own tissues.
“I had a really hard time with the first doctor I saw,” she says. “But I don’t think I would have liked him in any facet of life. I needed more info, and I was shell-shocked from the diagnosis.” Joni left that doctor for another, whom she thinks is wonderful.
In her experience, she’s found that younger doctors give better care to older patients. “That kid right out of medical school—he’s still a wide-open book,” she says, “open-minded and much more attentive.” But the danger is, she they’re too open to patient suggestions: “You drop a hint about what might be wrong or what kind of treatment you want, and they run with it.”
Sharon agrees with Joni about the generational issues surrounding medical care. “Doctors can be very condescending to older patients,” she says. “It’s like they think we’re confused because we’re older—so they give you a pat on the head and tell you to do as you’re told. And I always followed doctor’s orders, did exactly what they said. I should have been more aggressive about getting second opinions.” Sharon, too, has appreciated the eagerness of younger doctors. “They always know the latest thing and want to try it,” she says.
Madeleine, on the other hand, has experienced the downside of youth in doctors. “They’re so into technology that it distances them from people,” she says. She once watched an older doctor show a younger doctor how to hand-write a prescription because the computers were down. “Young doctors don’t even know how patient care used to be,” she says. “I could teach them some things.”
Joni’s a tough cookie, but she believes strongly in relying on friends and family to be medical advocates. “I think every patient, whether they go into the hospital or are hit with a blockbuster—should be advised to not go to the complex appointment alone, because they’re only going to hear every fifth word. And they should be choosy about whom they pick to go with them. It’s got to be someone who loves you, but isn’t controlling and will follow your wishes, and keeps you calm.”
Suzanne’s two daughters are her advocates. “Eventually the roles reverse” between parent and child, she says. “My oldest daughter is totally against any more surgeries for me.” Suzanne, in turn, is the medical advocate for her husband, who suffers from short-term memory loss. She shares her counsel with friends, too. “I tell my friends who are my age: You’re not going to be playing golf in six weeks. Sometimes it can take a year to totally recuperate.”
WISDOM OF AGE
“It’s hard to weigh the pros and cons of treatment decisions,” Suzanne says. “Ultimately you don’t know. It would help if doctors would look at your whole history, where you are in life, what kind of shape you’re in. They need to see the big picture.”
“Focus on me and act like you care,” Sharon says. “You can tell who cares and who doesn’t, and the ones who care will have a happier patient with a healthier outcome. It’s a simple thing.”
“Doctors are doing a lot right,” Joni says.
“They’re trying to get people to go to the doctor before it’s so bad. They solve many things. They work hard to get people to live healthier, and they are—that part of medicine is amazing.”
“Just remember: we’re old, we’re not dead,” she says. “We have value, and what we have to say has value."