U Grandma”—and “get well” balloons all over. All five of Andrea’s children stood up as soon as I walked in; the nurses followed me. The family once again expressed their gratitude to all of us.Your Best Ally
Working with the Medical Team
It was 5:00 p.m. on Christmas Eve. I sat down in the ICU call room and took a deep breath. I was one hour away from signing over my ICU patients to the nighttime doctor, and one hour away from a much-needed three-day vacation. I closed my eyes to rest briefly, and within seconds I heard, “Dr. Ferrer, stat [come immediately] to the ER. Dr. Ferrer, stat to the ER.” I seldom get called stat to the ER, which is staffed with very capable doctors. This call means trouble—serious complications. I ran down to the ER and found a sea of nurses, respiratory therapists, and ER doctors running from one side to the other. “Dr. Ferrer, Dr. Ferrer . . . room 7. Right here.” I made my way through cables and IVs to find the ER doctor holding a mask on the patient’s face. The respiratory therapist was squeezing the bag.
“Hi Gus, a difficult airway patient,” the ER doctor explained. “I attempted a few times but could not get the tube in. I asked RT [the Respiratory Therapy department] to bring the video bronchoscope and to call you.”
“Absolutely. Let’s keep the head upright, open her mouth with a laryngoscope, and keep an oxygen mask close by her mouth.”
In a matter of seconds, I took a deep breath, prayed, and unconsciously held my breath as I felt my heartbeat pumping in my ears. Thankfully, I was able to navigate the scope with the tube into the patient’s windpipe. The team clapped, and the ER doc and I saluted each other with a high five. I stepped out to the nurses’ station to gather some history on the patient. Andrea was an eighty-two-year-old woman debilitated by diabetes and heart failure, and very much loved by friends and family. Her two daughters were outside the room clutching their hands as they watched the ordeal with the breathing tube unfold. I introduced myself to them. They were crying and trembling and still gripping their hands so tightly that their fingers were turning white.
“She is stable now and on the ventilator—the breathing machine.”
They hugged me and went around hugging the nurses, residents, and medical students, repeating, “Thank you, thank you. Thanks to all of you.”
They told me about Andrea’s medical problems and of her multiple hospitalizations. We then talked about her family. Andrea had five children in all: the two daughters at the hospital, twin sons living in New York, and a daughter living in Colorado. All of them understood that their mother was critically ill. She was found facedown on her kitchen floor by her daughter who stopped by after work. They didn’t know how long she had been lying there. The last time someone had spoken to her was two hours prior. At this point, we still didn’t know whether Andrea had brain damage from the prolonged lack of oxygen. We went over the test results we did have, and before closing our conversation, I asked about Andrea’s wishes: “Does she have a living will?”
“No, Doctor,” the two daughters replied in one voice.
I make it a point never to judge this response. As much as I’m an advocate for having advance directives in order, I understand that taking that step is difficult. In some cases, people aren’t even aware that they can appoint a health-care agent, for instance. “Okay, for now, let’s get to work. We still have to do more investigating.”
I went back to the ICU for my sign-out. Ready to go home, I had a deep sense of accomplishment. I sat down in the call room one more time, closed my eyes, and took a deep breath, followed by another one, when all of a sudden a thought crossed my mind: “What if she doesn’t wake up? How will they respond?”
Soon afterward, my colleague and replacement for the evening knocked on the door and walked in. We reviewed the status of each patient. Another handshake and out the door I went.
Before I knew it, my short vacation was over, and I went back to work in the ICU. I got my sign-out, and Andrea was on the list. Her condition had worsened, and she was not waking up despite being off sedatives. I walked into her room. The wall was full of taped-up thank-you cards, pictures, and handmade cards with kids’ scribbles—“I U Grandma”—and “get well” balloons all over. All five of Andrea’s children stood up as soon as I walked in; the nurses followed me. The family once again expressed their gratitude to all of us.
The Magic of Teamwork
When families and the medical team work together for the good of the patient, I always sense a bit of magic in the air. Even when the news or the situation is heavy or sad, everyone working together for the good of another human being creates an underlying feeling of joy. I relish this feeling in my work. It tells me I’m in the right place at the right time doing the right thing. This type of collaboration usually only happens when everyone involved respects one another. In my opinion, respect is a natural by-product of good communication. And good communication is a two-way street. When family members approach the medical team with respect, the team is more likely to respond in kind. So I encourage you to view the medical team as your ally and communicate with them—they are there to help.
In the hospital, the medical team is your best ally. Not only are they available for support and comfort, but at this point in time they possess the knowledge, insightful opinions, and important details about the current health of your loved one. Yet many family members are afraid to ask questions, aren’t sure what to ask, don’t want to bother the busy doctor, or go to the other extreme of ranting and raving and demanding all of the team’s time. Procuring information is critical to understanding your loved one’s medical state, and it begins with knowing what to ask—and knowing how to ask for it. In some cases, how much information you get depends a great deal on the relationship you have with the medical team. And so one of your—or your family Leader’s—first goals after learning the prognosis is to engage the medical team by setting the stage for collaboration.
Appoint a Single Representative
In chapter 1, we talked about how Janet, the designated Leader in the Rodríguez family, took charge of communicating with me and passing the information on to her siblings. She set up a brief meeting to discuss the best way to communicate with me and how often. It worked. I find that it helps to appoint a single representative as an official medical go-between. Communications tend to be more productive. Your loved one’s doctor can’t process a blast of emails from one person, constant calls from another, and a barrage of texts from yet another only to deliver the same details about the same patient over and over again. It’s a repetitive waste of everyone’s time. Most doctors care deeply about doing the best job possible for patients and their families, and this means providing care and communicating. My preference is to do both well. But fielding the same questions over and over again is counterproductive.
Most doctors I know respond to messages as quickly as humanly possible—and the operant phrase here is as humanly possible. Sometimes we can’t get back to a patient or family immediately or, frankly, in a timely way. So if a doctor doesn’t respond immediately, try not to take it personally. Using Janet’s approach to setting up the rules of engagement usually improves communications. Doctors know that the time they spend communicating is not going to be a wasted, or repetitive, effort. Most physicians are agreeable to reasonable terms.
If your Leader is able to develop a good relationship with the medical team, you are that much further ahead. Once trust has been established and you feel that you are being heard, the stage is set for good communication. When under pressure to make an important decision, you’ll know that your loved one’s medical team is approachable—and you’ll feel confident they are giving you the best advice.
Ideally, the family’s Leader sets collaboration as a goal. I routinely offer my patients’ family members some guidelines about how to best approach their loved one’s medical team. Over and over again, I find that this approach leaves family members with the feeling that they’ve done their due diligence and have the information they need to make their decisions. It also shows the medical team that you aren’t going to drag them into a family drama (something they really don’t have time for and that, incidentally, is the number one cause of clinician burnout in the ICU) but rather are interested in having a straightforward conversation. It starts with giving yourself time to think.
Nine Steps to Better Communication with the Doctor—Getting the Information You Need Most
1. Assess the situation. Unless it’s a life-or-death CPR situation, give yourself time to think and understand the whole picture. Bring in friends and family to help you assess the situation. It has been said that those outside the chess game can see the play better than the players. If you have a large family, choose a few of them. Five is a good number. Too many can cause confusion and division.
2. Ask for lay terms, please. In your first encounter with clinicians, ask the doctor to describe the condition in lay terms. Don’t feel intimidated or afraid! You have a right to know.
3. Request a meeting. After the first twenty-four hours, when the team has gathered information and lab reports, request a meeting. This first interview is to gather goals of treatment and encourage empathic communication that fosters trust. Being able to trust your medical team is essential. Request two things up front:
• Ask for a sit-down, private, face-to-face conversation. (If you cannot be at the hospital, schedule a meeting on Skype.) Sitting down relaxes you, and the clinicians will perceive you as not being in a rush. This encourages the doctor and clinical team’s full attention. Tell them that you want specific information regarding lab results, other test results or procedures, and diagnosis.
• Respectfully ask your medical team to gather the opinions of other doctors and consultants.
4. Openly acknowledge your feelings. You may be feeling frustrated or upset. Openly acknowledge your feelings, so it’s easier to set them aside for the moment. “I’m feeling frustrated and overwhelmed right now, but I want to try to focus on my father.” This way, the focus of the conversation stays on the patient.
5. Assess your clinician’s level of empathy and compassion. You likely know something about your loved one’s values and beliefs. Share this information in one sentence: “He believes . . .” or “She never wanted to talk about . . .” Gauge the clinician’s interest in what you have to say.
6. Communicate the type of information you want. Some people like details; others just want the highlights. Let the medical team know what you want by framing your questions appropriately: “Dr. Smith, would you explain the situation in detail?” or “Would you give me a general idea of the diagnosis and plan?”
7. Understand the prognosis. “Based on the information you currently have, what should I be expecting in a week, two weeks, months, years?” Ask them to explain any terms you don’t understand.
8. Summarize the prognosis in your own words. Repeat it back to them and ask, “Is there any other treatment available?”
9. Wait (if time permits). Discuss with family and friends and, if you feel the need, call for a second opinion. It’s important to process all the information, and that can take time. 
Get to Know the Team
As I’m sure you know, the medical team is more than just the attending doctor and a group of specialists. There are always a number of other professionals on the front lines of care, handling the day-to-day needs of patients and their families. Relationships with these professionals are invaluable. Approach them the right way, and they will be your best allies.
Nurses are a constant in a patient’s journey. In a hospital setting, they stay with patients wherever they go, knitting together knowledge of the person, knowledge of treatment, and knowledge of process. Close proximity often allows nurses to have a less formal and less threatening relationship with families and patients than some doctors might. People tell me they often feel the strongest bond of trust with the nursing staff. It’s a nurse, they say, who helped them when they were overwhelmed with information and by the myriad of health-care providers they encounter, the fragmentation of the health-care system, and the many decisions they are required to make.
A good nursing staff can help you—and the patient, if he or she is lucid enough—express thoughts, concerns, and values. Depending on the facility, nurses sometimes have training in end-of-life care and end-of-life communication, giving them the skills to advise families of patients with a life-limiting illness.
Make a point to find out the answers to the following questions:
• Who is on our medical team and who is in charge?
• Who are the two main treating physicians (that is, who is coming on the weekend)?
• When will the doctor be coming by?
• What number can I reach the doctor at if I have questions?
• Who is the nurse, the nurse’s assistant, and the case manager?
These questions may sound simple and basic, but you would be surprised at how many people don’t ask them. It’s more than okay to ask these questions. You have a right to communicate with the medical team, especially with the one in charge.
Every day that you talk to your doctor, you have to be positive and ask open-ended questions that trigger the doctor to explain more.
• Doctor, in your opinion, are we doing the maximum that we can do? What more should we be doing?
• Doctor, is what we are doing actually producing more harm? How so?
Every Time You Communicate with the Medical Team
• Be positive.
• Ask open-ended questions.
• Tune in to the team’s perceptions about the current level of treatment.
You’re not only looking for blood test results and other data. You want to be tuned in to the team’s perceptions on a daily basis. The team regularly sees patients with your loved one’s condition. Their perceptions hold some truth. You want to know if you are going too far. If you trust the team, you’ll trust their responses. When I sense that people don’t like or trust my answers, I sometimes encourage them to seek a second opinion: “You know what, perhaps we can call someone else to give you an opinion.” I have done that, and I know many doctors who do that. “I think we should call this consult to get some expert advice.” We’ll talk more about second opinions later in this chapter.
If the Doctor Is Incommunicado
Some doctors don’t bother trying to communicate well. In my opinion, they fall short on one of the most important aspects of their job—reassuring patients and families. If a family member of mine were under the care of such a physician, I would consider switching. A doctor who isn’t a good listener and doesn’t value dialogue, even if he or she is a fine clinician, adds turmoil to a family experience that is already difficult enough. If the doctor in question is doing harm on some level, even if only because of poor communication, consider finding a replacement. You have the right to do so.
Communication among Medical Teams
A word of caution: Don’t take for granted that every physician on your team is sharing information with every other physician. In my practice, we have procedures in place to make sure everyone is up-to-date about cases. This is true in many practices, hospitals, and other facilities. This is also what should happen, and we always hope it does happen. But this is not always the case.
Communication works best among doctors affiliated with the same medical group. If a loved one’s entire medical network is associated with the same hospital or large medical practice, it’s much easier for providers to keep abreast of a patient’s health status. Many groups share a unified record-keeping system, which gives doctors and patients access to all records in one place. When it’s not possible to stay within the same medical group, then be vigilant about record keeping.
Diana Jones, a sixty-seven-year-old woman, suffered from severe rheumatoid arthritis, atrial fibrillation (irregular heartbeat), and chronic bronchitis from years of smoking. She had swan neck deformities of her hands (the joints of her fingers hyperextended so that they bent downward toward the palm; in Diana’s case, the swan neck deformities were the result of rheumatoid arthritis), a short neck from compression fractures, and three toes that had been amputated due to severe circulatory problems. She came to the ER complaining of cough, green mucus production, a fever of 103°, shaking chills, and a worsening of shortness of breath. In the ER, she was diagnosed with pneumonia, and the ICU was called for impending respiratory failure. We treated her with antibiotics, fluids, nebulization (drugs inhaled as a mist), and oxygen.
Scott, the ICU physician on duty, called me to the ER to discuss her case. During his presentation, he held up a list of twenty-seven prescription medications, six over-the-counter drugs, four vitamins, and five “natural products” that she was taking. During the twelve to eighteen hours that she was awake, she was consuming forty-two medications—more than ten products every four hours. We dove into her records and discovered that she spent most of her days in doctor’s appointments, and all of the physicians were giving her something. Pain medications, anti-inflammatories, anti-rheumatic drugs, inhalers, blood pressure medications, diuretics (water pills), blood thinners, over-the-counter pain medications, anti-allergy medication, antacids, and the list went on. Scott grouped the medications in categories that overlapped and then grouped them by side effects.
Diana’s daughter, Cynthia, told me that Diana was experiencing nausea after starting a natural product for arthritis. The night before the ER visit, she took her narcotic pain medication (Vicodin) and went to sleep. Cynthia found her in the morning in a pool of vomit, conscious but confused. She called 911.
After learning about all of the drugs Diana was on, we determined that she very likely was nauseated from the medications to the point that she vomited but could not protect her lungs from it. How did we know this? Vicodin (as well as other opioid pain medications) can suppress the gag reflex and depress the breathing center.
Scott and I cut down Diana’s medication list to eight pills. Three days later, she was up in bed with minimal shortness of breath. Diana was an unsuspecting victim of polypharmacy (the taking of multiple medications), which caused unintended side effects from bad drug interactions. Polypharmacy, not pneumonia, brought Diana to the ICU.
Limiting your loved one to twelve pharmaceuticals is a good rule of thumb, if possible. But regardless of how many medications and supplements she takes, you’ll want to ensure that she is avoiding harmful drug interactions.
Medicine Checks
All drugs (including alcohol, prescription, over-the-counter, legal/illegal) and supplements have the potential to interact with another drug or supplement and create an unwanted side effect or an entirely new condition. For example, when taken together, ginkgo biloba, a natural remedy for circulation, and Coumadin, a prescription blood thinner, significantly increase the risk of bleeding. Not all hospital systems are set up to monitor drugs prescribed by a clinic in a different system, and any system is fallible. So the onus is on you to initiate periodic medicine checks. Collect all medications from home, including aspirin, cold medication, prescription bottles, and supplements. Put them in a brown bag, give it to the doctor, and request a medicine check. The doc will enter the medications into a software program to determine whether any should be omitted or avoided. Continue to reconcile the list of medications the nurse gives your loved one: “What are you giving her? How long does she need to take it? Here’s her current list of medications. I want to make sure it doesn’t interfere with anything she’s currently taking.”
The Yellow Notepad
Maintain one notebook or file to keep track of important information. It doesn’t have to be anything fancy. A simple yellow notepad will do. When keeping records, never assume. Missing information may be the key to getting the right care. Never forget that you are an advocate for your loved one. Keep copies of all records, and take the following steps:
• Make a list of all doctors, important phone numbers, and all medications.
• Distribute the list to each physician on the team and update it as necessary.
• Make sure someone is present to take detailed notes during each doctor visit.
• Request that specialists send copies of medical records to the physician in charge after each update and be sure to let each doctor know what has happened between visits.
You may have to follow up several times, so be prepared to stay persistent. Be polite but firm. This will annoy some physicians, but so what? A patient’s daughter recently told me that she had to request a transfer of her mother’s records five times before someone finally did it. Being an advocate isn’t always easy.
Bottom Line
A personal connection can do wonders during this process. Whenever possible, speak to medical staff in person. There is no substitute for gauging facial expressions and body language. Of course, if you are far away, this isn’t always possible. Consider taking a few days to visit the hospital, so you can introduce yourself and strengthen relationships. When medical staff see that you’re invested, you might be more likely to get a timely phone call and more information. After all, they’re only human. If you can’t be there in person, work hard to stay cordial through phone, text, and email, even if the person on the other end of the phone isn’t reciprocating.
I wish I could say you won’t encounter rude, curt medical professionals. I make no excuses for them. The vast majority of people who go into medicine tend to be compassionate and kind; most of them are helpful by nature. Whether it’s the long hours, burnout, or the lower-than-they’d-like pay that erodes the empathy of a few, I cannot say. It is unfortunate when a patient or family member in crisis encounters people in the system who have forgotten their humanity. I once overheard a patient’s daughter lecture a doctor she felt had been distant and vague about her father’s treatment, reminding the doctor that he was dealing with a real, flesh-and-blood human being who only had one life. Could he possibly take the time to do more than order a few tests, she wanted to know?
When You Don’t Trust (or Like) the Doctor
What do you do when compassionate communication is not on the doctor’s agenda? If you and the doctor are having trouble communicating—whether because your personalities clash, you feel “unheard,” she hasn’t given you the time of day, you think she doesn’t know what she’s talking about, you sense the facility is outdated or poorly run, or you have a gut feeling that something is off—you won’t be satisfied with what she tells you, even if she’s number one in her specialty. I would advise you to either hand the reins over to another family member who can work with the clinician, take it up with a hospital supervisor, call in the case manager for help, or seek a second opinion.
Touching the Heart First
From the clinician’s perspective, breaking bad news can be particularly stressful, especially if the clinician is inexperienced. I want to share with you a story of my own inexperience and the effect it had on my patient’s family—and on me.
Years ago as a young doctor, I was called to the ER to see a patient in his nineties. He was coming from a nursing home. His blood pressure was so low that we couldn’t even measure it. It was basically undetectable, a sign that either his heart was not pumping blood to his vital organs or the blood vessels were extremely dilated. His cells were dying. Soon, I was sure, his body would shut down. He was burning up with fever and dripping sweat everywhere, his body fighting infection. When I arrived in the ER, the nurse was waking him up so that I could speak with him. Although he was very responsive to my questions, he would mumble in-between. I knew nothing more about the case, yet found myself quick to judge. I started making comments with the nurses: “Why do we do this? He should be in hospice.” While I was ranting away, the patient’s wife, Doris, and their daughter walked into the room with trembling voices, trying to see what was going on. They approached me, and Doris asked, “Doctor, what’s the problem?”
Without really thinking, I blurted out a string of medical terms. I remember that I told her he had sepsis and encephalopathy—I was using all kinds of medical terminology, and I was quick to verbalize everything that I knew at that point without taking into account anything other than my thoughts and frustration. I employed no filter, nor did I choose my words carefully. Instead, I went for the shorthand version, the dialogue that would say the most with the fewest number of words. I communicated a lot, all right.
“He’s not doing well,” I said. “I think you should consider making him DNR or sending him to hospice.” In my haste, I rushed through my analysis and flooded that family with a shower of medical information without taking into consideration that I might be igniting confusion. Worse, I used an impatient and judgmental tone. I made no effort to conceal the frustration I was feeling, even though these two lovely people, who clearly cared for this man, were standing right before me.
Doris gently left and, with tears in her eyes, told me, “You know what? He will come back to me. I know he will. You keep your knowledge, and I’ll keep my faith.”
I didn’t pay attention to Doris’s words at all. Doctors hear these kinds of comments all the time. It can be easy to tune them out when we feel we have more important things to think about. Yet, when doctors are quick to judge outcomes, we run the risk of creating false expectations, good or bad. Doris, however, clearly had her own set of expectations, and at the time, neither of us were interested in battling it out.
Over the following days, our medical team gathered some information and did some blood tests, and I realized that what the patient was facing wasn’t that bad. He was critically ill, but based on the APACHE score and the severity index that we do for a patient with severe infections, the probability of him fully recovering was pretty good. We put him in the ICU, and he got the appropriate treatment. The next day, I came from my rounds in the ICU and, surprise, he was sitting up in his bed having breakfast. You probably know what’s coming next.
I walked into the room, and Doris and her daughter were there, and with a big smile, Doris said, “I told you that he would come back.” I tried to do damage repair by explaining it was a false alarm initially, but after gathering some data, I knew he would recover. Unfortunately, the damage was done. I had lost their trust. After three days in the hospital—talking to them, being responsive, being there, not trying to justify anything—I was able to gain some ground in their hearts. By day five, the patient was ready to be moved out of the ICU to the regular floor in the hospital. On that morning, I happened to pass by his room, again in a rushed mood because I was in the middle of transferring another patient out of our busy ICU. I walked in to the room intending to give a quick “good-bye” and tell the family that he’s doing great, but Doris wanted to talk.
“Come in the room and sit down. I just want to talk to you face-to-face,” she said as she sat down. She asked me if she could hold my hand.
I said, “Sure, absolutely!”
She asked me to look into her eyes, and she continued: “Son, you have been gifted to help others. You have the gift of healing. Doctors have this gift. But before you make any comment, explore first, and never say ‘never’ unless you have the medical scientific evidence to back up your statement.”
I acknowledged what she said, and after a little pause, she added, “You have to see that you are touching people’s hearts first, and then you can engage in a conversation with them. But first, touch their hearts. Get to know them as human beings. They are not machines. They are human, they have families, they have needs, they have problems, and they have bills to pay. We are people in need.”
I was listening carefully as she said, “You have to try to understand people more when they are walking through the valley of the shadow of death. Because this is the time when they really need less medicine and more compassion.” She then looked directly into my eyes and said, “You don’t have the final answer. God does. But he gave you the education you have to make an educated guess, a prediction. You have to use it right.” She paused again for a few seconds and said, “Dr. Ferrer, this gentleman here in this bed, he was a professor of medicine and very well known in his college for forty years, and I was an ICU nurse.”
Her words practically killed me. Five days under my care, and I didn’t know that he had been a doctor, Doris had been an ICU nurse, and the daughter was a practicing nurse, and I made all of the mistakes that a young doctor can make.
Doris was a turning point in my life. She woke me up to the “other” important part of my role as a doctor. Right then and there, I made the decision that when doing my initial interview with the family, I would ask questions about family, friends, who’s helping you, pets—to make a sincere effort to connect with the patient and family.
Doctors can have all of the knowledge, the science, the data, the statistics, but if we don’t put compassion into the picture, we don’t have the family’s trust. If I’m going to have difficult conversations with families and propose gut-wrenching end-of-life decisions that bear any weight, I must have their trust. Having these conversations and making bold statements without having earned trust can be likened to asking someone to cross a frayed zip line with rusty gear. There’s no assurance that the equipment is safe and secure. It’s being flippant with someone’s loved one.
We doctors save lives, but patients and their family members sometimes have the power to change our entire outlook when it comes to how we practice medicine. Do not be afraid to be a Doris. Be the person who holds the doctor accountable for not only delivering the best medical care possible but also for taking the time to touch your heart. Trust and acceptance come easier to family members when they believe the medical team cares about their loved one’s welfare—when they know their loved one is not just a statistic, a chart, or a bed in a room. And acceptance is a precursor to peace.
Bedside manner aside, it’s highly possible that the information the doctor is giving you is in your loved one’s best interest, but his or her method of delivery is clouding your perspective. Yet, if you feel uneasy, do not hesitate to request a second opinion. I found myself in this position after my wife underwent a simple stress test.
Nikki’s Beating Heart
My wife, Nikki, is a terrific runner, and if I may brag for a moment, she is so talented that she sometimes wins races outright—that is, she beats both the women and the men!
A few years ago, Nikki started complaining about a funny feeling in her chest every time she ran at a high intensity. When she slowed down, it went away, but it came back anytime she picked up her pace.
I was working hard and traveling a lot at the time, so at first I didn’t pay much attention to her. “It’s just reflux,” I said. “Don’t worry about it.” But after a few days, something clicked, and it pushed me to make an appointment for her for a stress test with a prominent cardiologist I knew. I asked him to check her heart. “It’s probably nothing, but let’s just make sure,” I said. He’s an avid runner, too, so I felt he would understand where I was coming from.
He ran the tests. They showed nothing, but when I looked at how Nikki had been tested, I still had this nagging feeling that there was a problem. I felt they hadn’t pushed her hard enough; she mentioned that she never broke a sweat or got to the point where she would typically feel the pain. I asked the doctor to do another stress test, this time a harder one, but he didn’t agree. “She’s fine,” he said, clearly annoyed. “You’re making too much of this.”
I could have let it go at that point, but my doctor’s instincts were now really tingling. I decided to go for a second opinion. I found another doctor who agreed to do the test the following day.
I couldn’t clear my schedule on such short notice, so Nikki went to have the test alone. I will always remember getting that call while I was in the middle of a patient’s exam. They told me there was something wrong, and I needed to come to the ER right away. The feeling of my stomach flip-flopping, then dropping into my feet, is something I will never forget. I got that call after Nikki’s exam.
The second test revealed that whenever Nikki’s heart neared its maximum effort, one of the walls in the chambers of her heart collapsed because of a malformed blood vessel. It’s a condition we docs refer to as the “widow-maker” because it’s rarely caught in time; most often, people are just walking along when suddenly their artery bursts. They die almost instantly. We caught Nikki’s problem in time, and I thank God for that every day.
That experience taught us so many lessons, but the one I want to convey here is that you must be ready, willing, and able to stand up to your medical team if your senses start tingling like mine did. In fact, I encourage you not to wait for that gut reaction or your senses to tingle. There are questions you should always ask your medical team. The truth is you can love your doctors and not love their advice. They may get annoyed with you. Frequently they’ll push back, and sometimes they may be outright hostile. There are reasons for these reactions—reasons deeply embedded in the medical system—but I’ll show you some steps you can take to get those answers anyway.
The Fear Behind the Second Opinion
Many doctors react to a request for a second opinion because they automatically associate “second opinion” with “sue,” and perhaps no other verb in the English language has done more harm to great medical care than that three-letter word. Doctors fear hearing it; frustrated or angry patients and family members sometimes bandy it about, and the word comes flying out of their mouths when they don’t know what else to do to get their doctor’s attention. It makes patients feel powerful, but most of them are saying it because they feel powerless. It puts medical teams on the defense, so much so that even asking for a second opinion can ring an alarm in the doctor’s head.
So many doctors are afraid of being sued that the second opinion has become the Pandora’s box of health care. It’s a touchy subject. A lot of thoughts zoom through a doctor’s mind: They’re going to sue me. They don’t trust me. They are questioning my medical knowledge. While a small minority of people are looking for a reason to sue (whether they have legitimate reason or not), most people just want assurance that they are making the best decision based on the most accurate information.
Research is limited, but according to one study, nearly 35 percent of second opinions are about confirming the diagnosis. More people (41 percent) want to know whether their doctor is suggesting the best treatment. Nearly 95 percent of the patients said they were satisfied with their experience of getting a second opinion, yet only 61.2 percent either agreed or strongly agreed with the second opinion. The impact of a second opinion on survival rate is extremely low. In most cases, treatment does not change. However, the data do support the value of a second or third opinion on biopsies when people receive a cancer diagnosis. The reason for this is likely that when you call for a second opinion, doctors spend more time looking through the biopsy.
Although second and even third opinions are common and expected in the medical industry, a second opinion is not sought as often as it should be because, in some cases, the outcome does change.
Mr. George Patel’s Case
George Patel was a sixty-five-year-old public accountant who came to my office with chronic shortness of breath and an abnormal chest X-ray. His daily routine of more than ten years was to walk two miles in the morning with his wife before heading to work. One year prior to his visit, he noticed shortness of breath on exertion that gradually limited his walking distance to less than a mile. He went to see his primary doctor, who performed an extensive workup and sent him to see a cardiologist. No problems were found with his heart, but the chest X-ray showed some abnormalities, and George was referred to my clinic.
George walked into the exam room supported by his wife. He managed a few steps at a time, but even this slow pace was difficult for him. His breaths were short and labored. Darlene, my nurse, walked into my office and told me, “You need to come and see this patient now. He doesn’t look good.” I ran into the room, and George was sitting up on the exam table, dripping with sweat, pale, his chest heaving with every breath.
“Hello, Mr. Patel . . .” and before I could finish my greeting, his wife interjected.
“Doctor, he can’t talk. He is too short of breath, and it is getting worse by the hour. I’m scared. He is scared.”
I put my hand on his shoulder, looked at his wife, and told them, “We are going to do our very best to help you. Hang in there.” Within a split second, my right hand moved to his wrist to search for his pulse. It was bouncing and fast, a sign that his heart was working hard. My left hand placed a pulse oximeter on his finger, just as I was taught more than twenty years ago in medical school in Cuba. This routine is now practically part of my DNA. His O2 saturation (oxygen level in the blood) was 81, and his heart rate an accelerated 127. His body was working hard to keep his brain and vital organs oxygenated. I called for an oxygen mask stat. I looked at his mouth and eye mucosa searching for signs of anemia. I then quickly performed a head, neck, chest, abdomen, and legs exam. A quick listen to his lungs revealed crackly sounds in both; it sounded just like pulling Velcro apart. George was in impending respiratory failure. We put him in a wheelchair and took him to the ER. We ordered a blood test and a CT scan of his chest. Life-threatening causes such as blood clots and heart attack were ruled out. He had no evidence of heart failure. The problem was with his lungs.
The CT scan revealed diffuse white spots in both lungs: normal lungs on a CT scan are predominantly black; his CT scan was predominantly white. It was not a bacterial pneumonia because he’d had months of progressive shortness of breath with no fever or chills. The blood test procalcitonin was normal; this helpful test excludes an active infectious process. I knew then that we were dealing with an inflammatory noninfectious process, a group of more than three hundred diseases resulting from inhalation of dust, fumes, vapors, or gases. We call them interstitial lung diseases (ILDs). A detailed history was the next step.
I interviewed his wife as if I were Sherlock Holmes, searching for all kinds of possible exposure to asbestos, toxins, vapors, and animals but could link nothing as a direct cause. This failure is not unusual. In more than 50 percent of ILD cases, we are not able to find the direct cause. The next step was to obtain a lung biopsy, a surgical procedure that requires general anesthesia. The chest surgeon uses a videoscope to access the lungs through a small hole made between the ribs. In performing this procedure, we ran the risk of not being able to remove the ventilator after surgery. At this point, a lung biopsy was essential to an accurate diagnosis. After I carefully described the risks and benefits, George and his wife agreed to the procedure.
The biopsy was performed with no complications. George was transferred to the ICU intubated on a respirator. The tissue was sent to the pathologist for analysis. The same day, I met with the pathologist who told me it would take at least a day to process and analyze the tissue. Although this time frame is not atypical, I was feeling impatient. We didn’t have much time.
I went to the ICU to check on George. He was breathing comfortably on the ventilator from which he obtained 65 percent of his oxygen. Weaning off the ventilator would not be possible until the percentage of oxygen provided by the ventilator dropped below 40 percent, at which point he’d be able to breathe on his own. Finding a disease process that responds to steroids was key. If the biopsy revealed predominantly inflammation, the chances of survival increased tremendously, but if the biopsy showed fibrosis (scar tissue), a lung transplant was the only door out for George. Unfortunately, transplants are performed in select centers in the country, and intubation could disqualify George from being eligible.
The next day, I got a call from the pathologist. “Unfortunately, Gus, I cannot make any conclusive diagnosis out of this biopsy.”
“What do you suggest we do?” I asked.
She shook her head and walking back to her office told me, “We need a second opinion.”
“Yes, yes. But we need it now.”
She called Dr. Armstrong, a pulmonary pathologist at a reputable clinic, who graciously agreed to review the biopsy.
“It will take forty-eight hours. You need to overnight the entire biopsy to me, and I need a day to perform the analysis,” Dr. Armstrong replied.
The ICU team spent the next forty-eight hours helping George fight a good fight. Preventing complications and support was all we could do. Two days later at 9:00 a.m., I got a call from Dr. Armstrong: “Hi Gus, it is a hypersensitivity pneumonia. I made more cuts and found the classic granulomas. Is he a bird fancier?”
“No, his wife denies any exposure to birds. Thank you, thank you,” I replied. I hung up the phone, ran to the ICU, put in orders for IV steroids, and gave the news to Mrs. Patel.
I started by telling her the number one thing people want to know. “It is not cancer,” I said. “It is an inflammation that we can treat with steroids. Most people respond very well,” I smiled. She returned the smile and folded her hands to her heart in a gesture from her native India. Bowing her head, she whispered, “Thank you.”
We had a treatment, but as a scientist I was still determined to find the cause. I pushed a question I’d asked earlier related to birds: “Is there any way he would have been exposed to birds?”
“No, I told you we don’t have pets, and I know no one with birds. Let me ask some of his friends.”
George’s response to the steroids was fantastic. Forty-eight hours after starting treatment, he was extubated and talking, able to hold a conversation. I walked into his room and joined the group of smiling nurses and family. He went on to describe how bad he had felt and how good he now felt. I was very happy for him, but deep inside I felt that my job was not finished without finding the trigger, the cause. He could be exposed again once out of the hospital and get a similar or more severe reaction.
All of a sudden I remembered reading that pillows and blankets made out of feathers have been associated with triggering bird fancier’s lung, an ILD. Most people get the disease by inhaling the dust of bird droppings. It can happen to people who have birds for pets or who work in pet stores.
“Do you have a pillow or a blanket made out of feathers?”
“Yes, yes, pillows,” his wife replied. “I purchased them over a year ago.”
I sat down, took a deep breath in, and sighed. “That’s the cause, that’s the cause. We found it.” I instructed his wife to remove any and all feather-based pillows from their home and to launder all bedding before George came home.
A few days later, George left the hospital walking and without oxygen. I saw him in my office a month later, and he was back to walking his two miles a day. The specialized pulmonary pathologist’s second opinion made all the difference in Mr. Patel’s diagnosis, treatment, and life.
In addition to potentially avoiding an unnecessary procedure or making a serious decision based on false information, second opinions can offer patients and families peace of mind. Even if the original diagnosis is found to be accurate, families usually feel some sense of relief. They’ve done their due diligence—they’ve covered the bases and haven’t let important information slip through the cracks. They aren’t riddled with guilt for not “doing more.”
L.I.F.E.: When to Ask for a Second Opinion
Second opinions aren’t always necessary, but I recommend getting one if you encounter any of the following circumstances:
L: Life-Threatening Situation. When you are in a life-threatening situation, there is usually a lot of doubt and confusion. Considering a second opinion is always helpful.
I: Intervention. When the doctor recommends a risky, experimental, toxic, or unclear treatment, make sure the team is taking the right approach. Chemotherapy, despite how common it is, is highly toxic and falls into this category.
F: Feelings. Listen to your gut and act on your feelings. If the diagnosis is not clear or if you have any doubts about the clinical team, request a second opinion. This is especially true regarding biopsies, which are misread, on average, about 15–20 percent of the time. (The percentage of misreads depends on the condition. Skin biopsies, for instance, are misread far less often than breast cancer biopsies, which have a gray zone between normal and malignant.1) There’s a chance the pathologist is missing something in a biopsy, so I advise my patients to listen to their instincts. Your gut feeling should drive this.
E: Encouragement. A second opinion can help you calm down and feel like you have done everything for your loved one.
What Holds People Back
Most people let their initial perceptions guide their thoughts about whether a diagnosis is correct and the treatment adequate. A shiny, new, well-decorated lounge, pleasant and welcoming staff, and smiling nurses do say a lot about a facility but nothing much about the accuracy of a diagnosis and course of treatment. Doctors are only human, after all, and we have our limitations.
Another reason people shy away from a second opinion is to avoid offending the doctor. I don’t usually take offense. In fact, I encourage a second opinion when I know it’s important. I sometimes suggest it even when I do not believe it will change the medical outcome. For me, opening the door for patients to seek a second opinion is a way to build trust. I tell my patients, “Look, I believe that I’m doing everything that can be done on the whole planet today, in the world, but I don’t have the final answer. I acknowledge that everyone has limitations, and I too have my limitations. It’s possible I may have missed something, and I encourage you to get a second opinion.”
By far, more people tell me, “I trust you. We are not going to go anywhere else because we are satisfied with your efforts.” They have the feeling that everything has been done because I have been transparent by telling them that I am doing everything possible, but I give them permission, in a sense, to check with someone else. When I open myself up like that, when I make it clear that I will not be offended, I get incredible results. From that place of vulnerability, people sense the truth.
If your doctor does not make you feel this way, you might have to draw information out of her.
How to Approach Your Doctor for a Second Opinion
Doctors respond to reason, so I recommend using it when suggesting a second opinion. You don’t need a doctor’s authorization to request one, but you do want to keep your doctor informed. I recommend approaching the doctor with sincerity and reason:
“You know what, Doctor. We think you are great, but we as a family think we are going to need another opinion. Can you suggest someone? Someone who will give us an unbiased opinion?”
“I understand that you are busy, and I want to respect your time, but my family and I would like to know if you can refer us to someone for a second opinion. We want to have some reassurance and to know what types of options are out there for our loved one.”
This last statement is the one that the doctor is going to remember: “Listen, this is not personal, and I’m not looking to sue anyone, I just want to have answers. That’s it.” When you take the fear of being sued out of the picture, the oxygen in the room automatically goes up as everyone relaxes.
Be honest, be vulnerable, and be sincere. Take responsibility for your feelings. This has the effect of putting the medical team at ease. Honest, clear communication knocks down the wall physicians sometimes hide behind—the fear of being sued. When their guard is up, you are engaging in a battle. You don’t need a battle. You need the truth.
Google It
Online second opinions are now available from reputable hospitals such as the Mayo Clinic, Cleveland Clinic, and Johns Hopkins. You don’t need a referral, to be affiliated with the hospital, or to even speak to anyone at the facility. If you aren’t the patient, you will need to prove that you are the health-care agent. You will also need to upload the patient’s medical records and fill out a medical questionnaire. On average, the questionnaires take about one hour to fill out. The cost for the online second opinion is usually somewhere between $500 and $800, and it is not covered by insurance.
What to Request from the Medical Records Department
Requesting medical records is a process—one almost every patient or family member needs to go through. Having copies of important medical records is necessary for second opinions. Before starting the process, make sure you know what you need. Doctors and other health-care providers are interested in seeing doctor’s notes and full reports (lab, X-ray, and so on). Obtaining the records can take weeks, depending on how busy the hospital is. As soon as you know you need them, stop by or call the medical records department and request the following specific records:
• History and physical by primary physician upon admission
• Most recent laboratory reports
• Images (chest X-rays, CT scans, MRIs, and so on)—reports and images on a CD or via a link
• Medication list (active and discontinued)
• Surgeries and procedures reports (colonoscopy, endoscopy, and so on)
• Echocardiogram and electrocardiogram
• Consultants’ reports (cardiologist, pulmonologist, neurologist, ICU notes)
Try to also put together a sequence of major events, as shown in the following example:
2/12/18 |
Admitted to the ICU |
2/13/18 |
Intubated |
2/14/18 |
Central line placed |
3/01/18 |
Tracheostomy |
Nikki is doing great. The cardiologist I initially contacted to examine Nikki is doing fine, as well. In fact, he is (and has been) a good friend of my family. He and Nikki actually work out in the same gym. But I didn’t let this friendship interfere with my decision to pursue a second opinion. Nikki is far too important to me.
ACTION Practice Being Assertive
Make an effort to pay attention to how you express yourself. Some of us use the “you” word a lot: “You don’t listen to me. You don’t care about how stressed out I am. You never come to visit Mom in the hospital.”
“You” statements tend to put people on the defensive. If you catch yourself talking that way, try to reposition the statement so that you express how you feel, rather than accuse another of doing something wrong: “Doctor, I feel unheard when you walk away as I’m speaking with you.” “Doctor, I feel stressed out because I do not understand what’s happening with my mom.” “Sister/Brother, I feel abandoned when I am the only one at the hospital on most days.” When you’re assertive, you communicate a lot more—and a lot more effectively.
Caring for You
Acknowledge your emotional state. If you are having trouble staying calm, temporarily leave the room. You’ll sometimes see this called “going to the balcony”—a metaphor for stepping out of the room into some actual and psychological “fresh air.” By leaving the scene, you have a chance to calm down and think. You can then plan an effective response rather than react automatically.
• View the members of the medical team as your allies and treat them with respect.
• Appoint one person from your support team to be in charge of communicating with the medical team.
• Follow the communication guidelines to set a spirit of collaboration.
• Keep a list of doctors, important phone numbers, and medications.
• You deserve to be able to trust the physician in charge. If the doctor doesn’t communicate well, consider approaching him or her, talking to a case manager, requesting a second opinion, or finding a new doctor.
• Consider the initialism L.I.F.E. when requesting a second opinion.