10 // You need to share your expectations // Different people want different things from medical care. Unless you share your expectations with your nurses and doctors, they won’t know how to give you what you want. Doctors, says Fox Chase Cancer Center’s Theresa Pody, tend to be “gung ho: We can give you this, we can do this, we can do that.” But what are your goals? Do you want your life to be prolonged even if you’re in pain? Is it more important to you to stay functional? To be free of symptoms? What they think is your priority may not be what matters to you at all.
11 // Think hard before you designate an advocate // Nurses were very specific about how to choose someone to carry out your wishes when it comes to matters like ending life support. It should be someone you trust and who cares about you, and who is cognitively intact and has good social skills, since he or she will have to lobby for your needs. Family members often won’t carry out a patient’s wishes even when they’ve been clearly stated. “Your advocate has to make that hard decision,” says Doylestown Hospital’s Andrea Marino. “It has to be someone who can take a step back and say, ‘This is what she wanted; I have to do it.’ Everyone can’t do that.” She says most ethics consults requested by nurses at her hospital come when there’s a conflict between what the patient wrote down and what the family wants to do. Adds Presbyterian’s Lorie Fosbenner, “You need somebody to implement the advance directive. It’s not just, ‘Oh, because it says this, this is what we’re going to do.’”
12 // It’s a HIPAA thing // Patients and families don’t always understand the Health Insurance Portability and Accountability Act and the privacy rules it dictates, says Jefferson’s Jaime Stazi: “Everyone who calls the nurses’ desk says they’re a cousin, and it might just be a nosy neighbor.” Nurses wish you and your family would choose a spokesperson they can tell everything to, who’ll then tell the rest of you. Sometimes family members get offended if nurses won’t tell them what’s going on, Stazi says, but the nurses aren’t being rude. They’re only trying to protect your privacy.
13 // A bad day for a nurse isn’t what you think // It’s got nothing to do with bedpans, or vomit, or being too busy to eat lunch. When nurses say they had a horrible day, what they mean is they couldn’t do what they wanted to do for a patient. “It’s because of the stuff,” says Lorie Fosbenner. “I couldn’t get a suction canister, or I couldn’t find a pillow, and I had to make a pillow.” Marilina Mancini says nurses on her floor have a running joke: No matter what goes wrong—cold food, bad food, a mean doctor—it’s the nurse’s fault. But there’s a truth at the heart of the joke: No one else is with the patient 24/7.