You’re alone in a hospital room, and a doctor just delivered terrible news. The emotional weight of the situation leaves you speechless, but as the reality of the situation sets in, your mind fills with questions.
What medications will you need to take? How much will insurance cover? Are there multiple care options—and if so, which one would be best for you?
We asked local experts for advice on how to advocate for yourself or loved ones while navigating the health-care system.
Ask Questions Until You Understand
Doug Morin, the executive director of Coachella Valley Volunteers in Medicine, spent 20 years in health-care administration. He started as a hospital social worker, and later worked in hospice care and direct patient care. He also battled cancer.
“When I was diagnosed with cancer several years ago, I kept asking my doctor, ‘What does this mean?’—until I actually understood what was being said,” Morin said. “I kept asking until, emotionally and mentally, my mind was ready to comprehend what was being said.”
Morin said patients and loved ones should not be afraid to ask questions, even if they’re nervous. He recommends asking questions until you understand—what tests are being ordered, what the benefits of treatments are, what medications you will or won’t need, and whatever else comes to mind.
Write Everything Down and Keep Records
Morin also recommended that you or a loved one take notes. These notes can help you keep medical professionals accountable, cross-reference changes, look back on past visits, understand prescriptions and more.
“Write it all down so that you can refer to it again,” Morin said. “Write down what your test results are for different things, even if it may not be the issue that you’re in the hospital for. And if you had to go to the hospital for whatever reason, you could quickly open (your notes) up and say, ‘This is exactly what’s been going on’ over the last two, three or 12 months since you last saw a physician.”
Dr. Laura Rush is a physician for DAP Health. Rush’s mother suffered a serious stroke earlier this year, and Rush has been helping her mother while “navigating the hell that is the health-care system.”
“I bring a notebook and write down all test results, medication changes and practically everything the doctor says, including surgeries or procedures—because we are all human,” Rush said. ”Even last week, I found medication errors on my mom’s discharge summary. I found that they had changed medications without notifying the family. You always want to check their notes and your notes.”
Rush added that you should learn when a doctor usually makes rounds with patients, so you know when you can catch them.
Ask for a Second Opinion
If you are uncomfortable or have concerns about a diagnosis or care options, do not be afraid to seek a second opinion.
“Medicine has its own language, and it’s easy for someone not in the medical field to get confused, which is why you want a second opinion,” Rush said.
Rush knows from her work experience that most patients don’t request a second opinion even when they’re confused or uncomfortable.
“People are afraid to ask for a second opinion,” Rush said. “People need to know that if you don’t feel comfortable, you can say, ‘No, I want a different opinion,’ and that’s OK.”
Requesting a second opinion can cost extra—but that second opinion could end up saving you money in the long run.
You Can Refuse Treatment
Morin said patients need to know they have the right to refuse or delay treatment—especially if they don’t understand everything.
“Just because somebody tells you to do something, that doesn’t mean you need to do it,” Morin said. “Maybe you need more time to understand the procedure or medication. You can say, ‘I’d like some time before I proceed with what the doctor is saying,’ and they won’t tell you no for that.”
“While my mother was being taken care of for her stroke, she developed complications and was complaining about bleeding, and so I fired the first team—and the second team ended up diagnosing her with colon cancer. They were able to remove it in time. … That’s because I was by her side.”
Dr. Laura Rush
Bring Someone With You, If Possible
Having another person in the room can help patients get proper information and not miss anything.
“Bringing someone was especially important for me when I was working in hospice care and home health, where I usually worked with the elderly,” Morin said. “(Patients have) a lot of stuff on our brains, and sometimes it’s hard to keep track of it all. And since we’re going through the emotional side as well as the intellectual side of understanding what’s wrong with us, it’s important to have someone there to ask questions and listen for things you could miss.”
Rush said being present for her parents has shown her how important it is to have someone else there to advocate and listen.
“While my mother was being taken care of for her stroke, she developed complications and was complaining about bleeding, and so I fired the first team—and the second team ended up diagnosing her with colon cancer,” Rush said. “They were able to remove it in time. … That’s because I was by her side.”
Don’t Be Afraid to Ask for a Translator—Even If a Family Member Can Translate
Patients who don’t speak fluent English should know they have the legal right to ask for a translator.
Morin said more than 80% of his patients are primarily Spanish speakers. Even when a patient has a family member or friend who can translate, it’s a good idea to bring in a professional translator.
“It can’t be family, because your family is going through this with you,” Morin said. “They’re possibly experiencing similar emotions around you. They shouldn’t be put in that position where they now have to deliver bad news possibly. What if you had tests in the hospital, and it comes back that you’ve got a serious, inoperable cancer—and you’re going to use a family member as the translator? It doesn’t feel right.”
Advocating for oneself can feel uncomfortable, but Rush said most health professionals prefer it.
“Being an advocate doesn’t mean you’re being adversarial,” Rush said. “Most doctors, like myself, welcome it if you’re prepared and courteous, and you’re invested in good outcomes—so don’t be scared to ask questions.”
