I’ve recently spent more time as a hospital visitor than at any time since the pandemic. A lot has changed since Covid-19, but my experiences confirm some good advice for older patients, their families, and the medical staff that cares for them. Here are a few ideas for patients and staff. While they focus on hospitals, many apply to nursing homes as well.
For patients: More than ever, you need an advocate. You are not at your best when you are in the hospital. You likely will hear a lot of medical jargon and may be required to make difficult decisions with less than complete information. Short-staffed hospitals may be unable to provide timely care. It is essential that you understand what you’ll need to do after you are discharged.
As soon as you identify concerns or have questions, try to write them down. Don’t rely on your memory. You may forget when the doctor comes by.
Try to have somebody in the room with you who is willing and able to ask questions. Having a good advocate has been a special challenge during Covid-19 related visitor restrictions. If your advocate can’t be there in person, try to connect them on speakerphone or even Zoom.
If you are not getting the care you need, your advocate needs to be able to raise those issues firmly, but politely, with the hospital staff. For older adults, your best advocate may not be your spouse, who may be too overwhelmed by the situation to help. Another relative or friend might be a better choice. You even can hire a paid advocate.
Ideally, your advocate should have a medical power of attorney to make decisions if you cannot. But it is more important than ever to have someone to help you navigate the hospital maze, even if they do not have legal authority.
For providers: Talk with your patient, even when an advocate or others are in the room. Too often, doctors (and sometimes nurses) talk about the patient but not to the patient. Patient-centered care is not just a marketing phrase. Your patients know their bodies better than you do. Listen to them. And respect them.
Even when patients are dying, they often hear everything. Assume they know what you are saying. And even if they are unable to respond verbally, they still can respond. You need to pay close attention to those non-verbal cues.
It is all about the nurses.
For patients: You’ll probably see a doctor during rounds in the morning. But you are not likely to see that doc again that day. The staff person who knows the most about you and what will happen to you during the day is your bedside nurse. She almost always will be able to answer medical questions and help run interference if things go wrong. Respect the nurses and what they do. With current staff shortages, they are extremely busy and sometimes overwhelmed. But good nurses will take the time to understand what’s happening with you and how they can help.
For doctors: Listen to the bedside nurses. They know.
For nurses: If your gut tells you something is wrong, say something. If you think a doctor made a mistake, say something. If the doc tries to bully you for saying something, tell your unit manager and the hospital medical director. You will save lives.
For patients: You may get bad news from a doctor. A difficult diagnosis. News that a treatment isn’t working as hoped or a surgery was not successful. The human brain often does not process bad news very well.
The doctor may have said something very different from what you thought you heard. If you didn’t understand what the physician told you, ask them to repeat it. And if you still are not clear, ask again.
Don’t stop there. Ask what is next. What will this mean for your hospitalization and for any post-acute care? What will it mean for your quality of life? Consider this bedside conversation just the beginning of the process of understanding your condition and any future treatment.
Your doctor may not be able to immediately answer every question and you almost certainly will want to have a more detailed discussion with a specialist once you are home. But this is an important time to begin gathering information. And, back to suggestion #1, have your advocate there with you, if possible.
For providers. Please speak in accessible language and avoid jargon. This is especially important when delivering bad news. I’ve noticed that docs seem more likely to fall back on medicalese when the news isn’t good. For example, surgeons may say clearly “everything went great” after a procedure goes well but default to incomprehensible jargon when it does not. The most important time to make yourself understood is when things are not going well.
I recently visited a friend who was nearing the end of life. She asked if she was dying. When I told her yes, she visibly relaxed. Extensive research supports my experience. While many doctors still believe that patients will “give up” when told they are dying, patients generally don’t do that at all. They want to understand the changes they are experiencing. You can help them.