My dad was in excruciating pain over Labor Day weekend, so my mom rushed him to the emergency room of a renowned university hospital.
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Doctors determined that he needed surgery that night, and luckily I was able to fly in and see him before he was wheeled away. “Take care of your mom if anything happens to me,” he said as my mom and I wept.
Thankfully, my dad made it through. But he had to spend 11 days recovering in the hospital, a place he now equates with prison.
One night, he suffered for five hours, desperately calling for help after his pain meds had run out. A nurse’s aide stationed in his room had fallen asleep.
“I called on the intercom so many times and nobody showed up,” he recounts.
That was just one of the many failures in care that we encountered during my dad’s stay. Others included inconsistent nursing quality, waiting all day for doctors to respond to pages, insensitive communication of bad news, trying in vain to reduce noise levels so my dad could sleep, and so much more.
My job is to give you advice on health care and insurance issues. My mom is a registered nurse. Yet we both felt frustrated that we couldn’t make things better for my dad.
Unfortunately, this happens to a lot of people. “Everything you hear these days is about patient-centered care, this and that,” says Terry Bay, who owns a Casper, Wyoming-based business that provides advocacy services to older patients. But “we don’t live in a patient-centered health care environment.”
Today I’m going to offer advice for you in case you – or a loved one – lands in a hospital.
What’s the law?
There are state and federal laws that cover, among other things, your rights to privacy, nondiscrimination, language interpretation and visitation, says Lois Richardson, vice president and legal counsel of the California Hospital Association.
But beyond legal protections, there are people you can talk to and steps you can take to improve your situation if you feel you’re not getting the care you deserve. And patients’ opinions do count.
“All hospitals increasingly are being scored and paid based on patient and family satisfaction scores,” says Rebecca Kirch, an executive vice president with the National Patient Advocate Foundation. “There is power in the people.”
That power starts with a few simple things.
First, make sure a spouse, child, family member or friend – anyone concerned for your well-being – can spend time with you in the hospital and be your advocate. You cannot do it by yourself while you’re in pain, medicated and not thinking clearly.
“It’s having someone else in your court, someone who can check in and make sure your questions are being answered,” says Dr. Rebecca Sudore, a geriatrician and palliative care physician at the University of California-San Francisco.
Before you or your advocate speaks to your nurse or doctor, write down your questions. Keep track of your glasses, hearing aids and dentures – the personal belongings that most often go missing in hospitals, Sudore says.
“How can someone speak up for themselves if they can’t see someone? Or can’t hear?” she asks.
When the time comes to ask questions – or express frustration – don’t be afraid to speak up. You have every right, even though it can feel intimidating to question your doctors or complain about your nurses.
“You can say, ‘No, I don’t want to go for that test. I want to speak to my daughter first,’” Bay says.
If you’re getting jostled out of sleep for a blood draw or blood pressure check in the middle of the night, ask your doctor the next day if it’s really necessary. Often, it can wait till early morning, says Julie Morath, president and CEO of the Hospital Quality Institute.
“It’s up to us to put our own humanity back into decisions,” Sudore says.
But here’s where speaking up can get thorny.
We don’t live in a patient-centered health care environment.
Terry Bay, who owns a business that provides advocacy services to older patients
Let’s say you don’t feel you’re getting adequate care or you’re unhappy with how you’re being treated. You can start with your nurse, but if that’s uncomfortable – perhaps because that nurse is the source of the problem – approach the charge nurse, who manages the staff in your unit.
You can also ask to talk to a hospital-based social worker, who can intercede or help you figure out who to talk to, Kirch says.
If that doesn’t help, take your complaints to the next level.
Every hospital that participates in the Medicare program – which is most – must have an ombudsman or patient rights advocate, Richardson says. My mom and I eventually complained to the patient rights advocate. It helped, and we wish we had done it sooner.
If you can’t go to the patient rights advocate yourself, “you can call them or ask your nurse to call them and have them come up to your room,” Richardson says. Hospitals must acknowledge patient complaints immediately, she says, and must respond in writing once they are resolved.
Learn the language
As part of this process, no matter whom you talk to, there are some phrases that can spur quick action, Kirch explains. One is “This doesn’t feel like quality care to me.” Another is “I see my loved one suffering.”
If you have a serious illness and you’re suffering from symptoms that aren’t being managed correctly, you can also request a consultation with a palliative care team. Palliative care isn’t only about end-of-life issues, it’s about quality of life, Kirch says.
Most large hospitals have a multidisciplinary team of doctors, nurses, social workers, chaplains and others who can provide added support on top of the medical treatment you’re receiving, especially if you’re getting shuffled between medical specialties.
“They can help tremendously to fill in the blanks … It can be pain management. It can be spiritual or psychological distress,” Kirch says. “The palliative care team treats the person beyond the disease.”
If you have done all that and still have concerns, Kirch’s organization has case managers who provide free, one-on-one support for patients. Call 800-532-5274 for more information or visit www.patientadvocate.org/help.php.
To be clear, I’m not suggesting you complain about every little thing. Be realistic. For instance, a hospital doctor may see up to 30 patients a day. So you might have to wait for your page to be answered unless you have a serious, potentially life-threatening problem, Sudore says.
“It may not be that you’re being ignored. It might be that someone has to figure out the competing priorities,” she says.
And don’t forget that your caregivers are human too, Morath advises. “They get tired, they get stressed,” she says. “Very often, just letting them know you’re not getting what you need and asking for their help … is a very powerful act.”
This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California HealthCare Foundation. Questions for Emily: AskEmily@kff.org