The healthcare system is complex and can be confusing for anyone. “Diagnosed, An Insider’s Guide for Your Healthcare Journey” by Cris Ross, chief information officer at Mayo Clinic, and Ed Marx, former chief information officer of Cleveland Clinic and now CEO of Marx Advisory, tackles this complexity from a professional and personal perspective. Ross was twice treated for stage 3 colorectal cancer, and Marx survived a heart attack and was treated for prostate cancer. In this excerpt, the authors draw on their experiences as patients and executives at two of the best hospitals in the United States to share their top 12 questions to ask medical professionals when you or a loved one is in the hospital.
So you’ve been diagnosed
So you’ve been diagnosed with a challenging medical condition. Or maybe you have a family member or friend who is ill and needs your support. We’re truly sorry. We’ve been through our own journeys and have supported family and friends on theirs. We have experienced the feelings and challenges you are facing. You are not alone in your journey. We will walk you through this.
We get you. We have been there — the shock, the fear, the loneliness, the anger. And we know that you are dealing with the emotions of a challenging diagnosis, as well as wondering how you are going to navigate a healthcare system that is confusing and frustrating. We want to help with both. As former patients, we want to share our journeys to help you with yours. As healthcare executives, we want to give you our insider’s view of how healthcare works and how you can navigate it.
We knew that if we, as industry insiders, struggled, those with little experience would face even more difficulties trying to navigate the complexities of our healthcare system. So we wrote the book we wish we’d had then.
We learned firsthand that the patient experience is not what it should be even at two of the world’s most elite healthcare organizations (Cleveland Clinic and Mayo Clinic). We also learned that the best possible patient experience when dealing with an aspirational but imperfect healthcare system fundamentally depends on how you, the patient, approach your journey.
QUICK START: YOU ARE IN THE MIDDLE OF THE MUDDLE
Someone with a medical emergency won’t have time to pick up this book. This book is not really aimed at helping you navigate the emergency department. But if you are ever in that situation or are advising a family member or friend, with little time or few choices of doctors or hospitals, or you are in a rural environment without a lot of options, a few things are key. It is important that:
- All information about your prior medical diagnoses and prescriptions is known to your medical caregivers.
- Your diagnosis and symptoms are explained clearly to you and/or someone who is there with you.
- You ask for as much information as possible.
- You have someone to help you remember, help you understand what you’re hearing, and even make decisions for you if you are unable to manage your situation. This is very important—even vital.
Fortunately, emergency departments are well equipped and trained to deal with these situations.
Essential questions and information to share
Whether you have a troubling symptom and want your primary care doctor to help, or you have been referred to a specialist, asking the doctors you interact with the following questions (in a printable pdf) will help you understand what is happening, increase your ability to participate in treatment decisions, and improve your patient experience.
- What is my diagnosis? What is that based on? Who made the diagnosis?
- Who is the doctor in charge of my case?
- What kind of specialist should I be treated by—and when can that person see me?
- Can you contact and work with my primary care doctor? Can all my medical records be shared?
- Do you have an accurate list of all the medications and supplements I am taking, and can we go over the list together?
- What are the pros and cons of the recommended treatments? Are there alternatives?
- Do I need to decide immediately what treatment I will receive, or can I take some time to do research before I decide?
- If applicable: Who in each medical office and hospital needs to know the name of my healthcare proxy and the name of the person who has my medical power of attorney?
- If I want, can I be transferred from this facility to another of my choice? How do I arrange that?
- What do you typically recommend for people in my situation and how much experience do you and/or the physicians you are referring me to have treating my condition?
- If you are heading into surgery: Who is performing the surgery? What are their credentials and experience? How many of these surgeries have they done?
- Do you accept my insurance? Will the doctors who see me and the services I receive be covered? What will my out-of-pocket expenses be?
Ideally, write down the answers to these questions so that you will remember them later. If it’s not possible for you to write them down, see if someone might be willing to help you take notes. You can also try using your phone to make notes about what is said. Do whatever you can to retain the information. Your mind will be going in many different directions, and remembering everything that’s said will be challenging.
You have the right to choose
Remember, in all but the most extreme circumstances you have a choice of doctors and hospitals. If you were ordering a pizza, you’d look up reviews on Yelp. If you were buying a car, you’d check various auto magazines and consumer guides. When it comes to medical care, you should choose doctors and hospitals with at least the same rigor that you’d use in picking a restaurant or buying a car. For example, if you are told you need surgery but the surgery can wait, insist on finding out about other options, and choose the surgeon who is best for you and your particular medical needs.
Next steps
Think about you—what will give you resilience, strength, and hope. In an urgent medical situation, once you have been diagnosed and first treatments have been administered, you’re then facing future treatments, recovery, the unknown. You want to take steps to improve your experience.
A key step in optimizing the situation is to nurture and build resilience. It’s an ongoing process. If you are in a rushed medical situation, you can’t say, “Wait, I’m going to build some resilience and then we can begin treatment.” You have to build it along the way.
Consider the following five proven ways to build resilience. Which are most powerful for you? Which ones will help you get through the next days and weeks?
- Be proactive. What needs to be done? Make plans and take action.
- Take care of yourself. Be as good to yourself as you would be to a loved one under these circumstances. You matter.
- Learn from experience. How have you coped with hardship in the past?
- Get connected. Depend on and build relationships.
- Make everyday meaningful. Set achievable goals while focusing on the future.
Remember, although you are not better informed than your doctor about medical matters, you are the expert on you. The clearer you are about your intentions, wishes, fears, and questions, the better your journey will be.
Begin to gather your friends and family around you. Identify who can offer assistance and support as you go through your patient experience. Some folks can be at your bedside when you’re in the hospital. Some can feed your pets and water your plants. Others can be a warm voice on the phone. And some will participate with or for you in making medical decisions.
Never stop asking questions. You have every right to know about your care, your care team, and the treatments you are being given—or not being given.
Fight for your health and happiness in whatever way suits you, but remember that you want your healthcare providers to be on your team. So you need to recognize that they are people too and deserve respect and patience, as well as thanks and gratitude for what they are doing for you. Join forces whenever possible.
Support Cancer Care and Research at Mayo Clinic
Join Ed Marx and Cris Ross, authors of Diagnosed: An Insider’s Guide for Your Healthcare Journey, in supporting the nonprofit mission of Mayo Clinic Comprehensive Cancer Center. With your support, Mayo Clinic is able to provide unparalleled expertise in patient care and innovative research to meet the needs of our patients.
100% of author royalties from the sale of this book benefit important medical research at Mayo Clinic Comprehensive Cancer Center.
Relevant reading
Mayo Clinic Diet and Cook Smart, Eat Well Bundle
This revised edition of the #1 New York Times bestselling book offers a simple, time-tested, no-nonsense approach to losing weight and keeping it off. The Mayo Clinic Diet by Donald D. Hensrud, M.D., isn’t a fad diet – it’s an approach that draws on years of research from thousands of individuals seeking…
