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Resident Physician, Internal Medicine
Beth Israel Deaconess Medical Center | Harvard Medical School
During the hospitalization:
- What’s going on? Why do I or my loved one need to be hospitalized? Ask your doctor or nurse to boil it all down for you.
- How do you measure progress for this patient? Ask the doctor, “what are you looking for to call it improvement?” that way you can be an active member on the healthcare team.
- To contrast that, what are you worried about happening? How could things go wrong?
- What’s the follow-up plan?
After a hospitalization or ER visit:
- Before leaving the hospital, ask when is your follow-up, and with whom? Try to make sure there’s a set plan. Some hospitals will make the appointment for you – others will just provide you with the number to call. Either way – find out when do you need follow-up and with which doctor (Primary care doctor? Oncologist?)
- Follow up on site – know whom you should get in touch with if something comes up between leaving the hospital and your appointment.
- Follow up when you are discharged – I can’t stress how much this is important.
- Are there any changes in your medications? Be organized about this. Did you get started on a new medication? Ask to be sure it doesn’t interact with your chemotherapy (especially if it was given to you in the emergency department and not on the oncology floor in your hospital – no offense to ER doctors, but if you don’t use chemotherapy, you’re less likely to be familiar with it). Also make sure they call it into your pharmacy (not the hospital pharmacy or pharmacy adjacent to the hospital). See if there is a generic form of the drug (before it is called in or written up). Not everyone takes into account the patients financial status and ensure coverage. Will you need to take supplements or over the counter drugs to supplement with this drug? Be aware of the side effects and take them into account with your interactions (rashes, dry mouth, dizziness, nausea incontinence etc). Keep your follow up physician aware (keep a journal or notation of it).
- Do you qualify for home services – like a visiting nurse to come help with your care at home? Some people need some extra help from a nurse at home with taking care of bandages, feeding tubes, chemotherapy ports or PICC lines (special type of IV that you can go home with). Other people may need some physical therapy to help them get their strength back. Occupational therapy is an option for a lot of people too.
- How should I take care of the bandage? How often does it need to be changed, and how do I do it? (Do I qualify for visiting nursing at home?)
- When do the staples or sutures come out? Are there staples and sutures there?
- When can I shower? How do I clean around it the surgical site?
- What are my alarm signs? AKA When do I need to be worried?
- Follow up? When and where and with whom?
- When to anticipate the pathology results? Often, these can take more than a day or two. How will you hear back about pathology results (if you leave the hospital before they come back)?
Where can I get more information? How do I not freak myself out?
- Exercise caution with WebMD – the internet is a very powerful tool, but you may need your doctor to walk with you through the information, since cancer is so different for everyone it cannot be universally or unilaterally cured by one click of a mouse.
- UpToDate (not to put in a huge plug for my hospital, since we invented and maintain this site). It’s the doctor’s little dark secret. News flash: we don’t know everything – anyone who says they do, red flag. This is what most doctors use to learn more, and to answer specific questions. It’s peer validated and contains the most up to date The best part is, there’s a section for patients! And it’s free. How to get there? Google.
- For example, you’re looking to learn more about pancreatic cancer? Google: “pancreatic cancer uptodate patient”
- This may help you to figure out what you know and what you don’t know – and other questions you may need/want to ask your doctor.
- There’s a healthy balance of information gathering that’s different for everybody. Don’t consume all your time reading everything you can – you need time to process the information you’re learning, think of questions/concerns you have – and most importantly, if you’re the loved one/support of a patient with cancer or a chronic illness – spend time with them! If you’re the patient, think of the flip side – spend time with those to help you through this. Though cancer or your chronic illness may be consuming your life, some distraction with happier thoughts is important for your own well-being, just as much as chemotherapy and radiation is.
Laughter is not the best medicine – but it’s pretty freaking close! Laugh and smile – however you can.