I don’t know anyone who has not had this experience: You have been sitting in a cold exam room when a person you barely know — and may not have been introduced to — rushes through a litany of incomprehensible information and then asks, “Any questions?” while already halfway out the door. And you sit there, too scared and overwhelmed to say anything other than, “No.”
I ask questions for a living, and I have found myself entirely stumped in more doctor offices than I care to admit. And I know my doctors and their administrators are often overwhelmed, harried and confused as well. Our healthcare system does not encourage productive, collaborative discussion.
Author Talya Miron-Shatz wants to help change that. And what I appreciate most about her new book “Your Life Depends on It: What You Can Do to Make Better Choices about Your Health” is that it explores the problems in healthcare communication — and then offers helpful perspectives not just for patients, but for professionals and the larger systems we all have to work within. It’s a wise and practical approach to medical decision-making for everybody, regardless of which side of the stethoscope we’re on.
Salon spoke to Miron-Shatz, a senior fellow at the Center for Medicine in the Public Interest, about why nobody wants to read those consent forms, how real life isn’t like a medical drama and why we should talk about death on our birthdays. This conversation has been edited and condensed for clarity.
You’re talking in this book about how we improve communication on all sides. How do we empower patients? How do we empower providers so that we have a clearer sense of everybody being on the same page, making fewer mistakes, making everybody feel as good as possible about an often really frightening and stressful situation?
I’m really glad this is how you perceive this because it’s just hard. It’s not hard for everybody, but it’s hard for most of us most of the time. When I was writing, it was really important for me that it wouldn’t seem like, “Some people are just not smart enough, so they have a hard time speaking with their doctors.” This is really not the case. These are very dire circumstances, and it doesn’t matter how high and mighty you are, how intelligent and knowledgeable. You can just be very confused and scared and anxious, and you need information conveyed to you in a specific way. And sometimes you need someone else to take the helm of your decision-making.
I wrote an article for the Wall Street Journal that got massive exposure, and then massive backlash because some people who are very deep into patient empowerment were saying, “What do you mean, patients can’t understand?” I was saying, not everyone, but sometimes you can’t understand. That’s fine. We should allow for a whole range from, “I know everything and I’m going to decide this on my own,” to, “I have no clue and I need you doctor to decide for me.”
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That’s what this book is really about, acknowledging that and then saying, “How can the healthcare system meet you where you are?” So let’s start with informed consent. We are all handed things in the same way that’s like, “Apple is updating its terms of service, and I don’t really need to read this.”
And you won’t. Maybe one in a million will read this, and maybe one in 10 million will actually understand what they’re saying.
I took my daughter to the orthodontist two weeks ago, and they said to me, “We’re going to send some forms to your phone and you’re going to sign them while she’s in there.” I’m at the front desk, and it’s seven different forms, and there’s clearly no encouragement for me to read them. I felt like, “What am I supposed to do here?” So what am I supposed to do here?
First of all, you’re supposed to be happy that there are informed consent forms, and this is something we should take into account. This was not always the case. Informed consent was born out of atrocious circumstances where someone would say, “You look interesting. Let me just torture you a little bit and see what happens for my experimental purposes, and I really don’t care what you think.” Thankfully, that has changed and that’s a really good thing. That goes along with empowering patients and just respecting their rights.
That’s the good part. Now here comes the bad part. You ask, “What am I supposed to do?” What the clinic wants you to do is to sign the forms. That’s what you’re supposed to do, right? What you want to do for real, especially when it’s your daughter and you want to be a responsible parent, is to actually read what are they saying. What are they doing? Are there any risks involved that you’re unaware of? It is not good procedure.
It’s lip service. It’s like, “Well, you signed the forms?”
“Yeah, I did. I never had the time to read them.” This is also a very good example of where being an empowered patient is just not enough. People got angry with me because they thought I was belittling their abilities, and this really is not the case. It is a case of saying, you are going to be a patient within a system, and you need the system to work with you. You cannot do this on your own. That doesn’t mean you’re stupid, it doesn’t mean you’re weak, it doesn’t mean any of these things at all. It just means it is incredibly unfair to say, “Hey, Mary Elizabeth. You’re smart, you’re educated, you can figure this out.” It’s abandonment masquerading as empowerment.
Guess what? You’re not Wonder Woman and Superman combined, and you cannot read through seven forms on your phone within the span of 30 seconds. This is where we need healthcare systems to really do the work. When I say really, I mean not as a lip service.
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The phrase that you use is that your mind is “programmed to save effort.” We’ve all got a million other things to do. To spend a little time looking on WebMD or watching “Grey’s Anatomy” can make us feel like we understand the situation. Whereas the medical system is so rife with jargon, it’s so confusing, it’s so dense, that then it just feels really intimidating to us as patients. That’s a systemic problem.
I want to go back to “Grey’s Anatomy” for a minute, and I want to bracket that. “Grey’s Anatomy,” it’s very clear. You understand what’s happening. Televised medicine is different from real life. Things in real life don’t happen at the same pace. CPR in real life isn’t as successful as it is on TV.
Even though you’ve seen things on TV, you need to understand that this isn’t really the case. You have to parse the facts from the fiction, and likewise, when you are looking for materials online. You have got to figure out, who is saying this and why are they saying this? Are they credible? In this era of social media where everyone has so much to say, sometimes the louder they are the less credible they are.
We want to do good by our children, by our own health, by the people we care for, be they older or younger than us. We have got to make sure we look at validated information. Even then, and that’s a scary thought, doctors sometimes overprescribe treatments or medication for financial reasons. We don’t want it to be like that, but it is like that. We have to ask them, “What are the risks, what are the benefits, and what are the alternatives?
And saying, “If you can’t answer that question, then I’d like to talk to someone who can.” That is an extremely empowering thing to do. It’s hard, but is a simple thing to remember.
You make it very clear again and again in the book, when we’re talking about statistics, that doesn’t mean us as individuals. Just because the odds of something might look good, that doesn’t make it right for us personally.
There’s a term that COVID made very apparent for all of us even though we don’t usually just state it, and that’s “uncertainty.” Medicine involves a lot of uncertainty. You could be susceptible to something and then not catch it. You could catch COVID and then it will be mild or not mild. You could not be in a risk group and then catch COVID and it’s not mild. Or not be vaccinated and not get sick. That’s an uncertainty. It doesn’t mean that not getting vaccinated is a good idea. In many, many cases, it’s a game of numbers. You look at the probability of things happening.
I want to tell you a story that really shook me to the core. I was a PhD student and I was invited to teach genetic counseling students on the psychological aspects of medical decision making.
I sat in on a number of genetic counseling sessions. One of them was with an oncogenetic clinic. A woman came in with her husband. She said her mother had died of breast cancer and so did her aunt, and she had the BRCA gene. The genetic counselor said, “You never tested. You may not have the gene. It’s right across the hall. I can prescribe you the testing, and then you’ll know.” She said, “No, but I already know that I have it.”
She was hanging onto this knowledge that wasn’t really knowledge. It was very hard to see, because it is hard for us to live with uncertainty. We turn uncertainty into certainty in our minds, and sometimes that really works to our detriment. That woman who may or may not have had the BRCA gene, and even if you have it, it doesn’t mean that for sure you will develop breast cancer. We need to go in wanting answers, but also acknowledging that sometimes the answers are incomplete or uncertain.
That’s not because someone’s lying to us, withholding information, not wanting to tell us. It’s just the reality. When a professional or a self-appointed professional tells us that they guarantee A, B or C, that’s when I would get suspicious, because our bodies and medicine do involve uncertainty, and it’s incredibly hard for us to deal with. We want answers. Is this going to happen or isn’t it going to happen? It goes back to us thinking in very simple terms.
We are a very consumer-driven culture, and we are consumer-driven patients. The problem arises because we are so attached to the idea of finding a word for our condition, a name for for our symptoms, which could be a real moving target. How do we get to that place of just saying, “Wait a minute. I deserve to have a real conversation and a real dialogue, and have a real partnership in my healthcare that looks different from this passive relationship where I’m going to purchase answers from you.”
What do we seek in a medical professional? Sometimes what we seek is authority, because their being authoritative makes us feel like they do have all the answers. We need to be tolerant of the limbo of the fact that sometimes the doctor doesn’t know. That doesn’t mean they’re not making an effort, it just means they could wait and try and figure this out. That’s a place where us being consumers might get in the way of us being healthy. When doctors are asked about the reasons why they overprescribe, the first reason is sadly because it brings them money.
Then there’s also the issue of, the patient wanted it. It’s sometimes good that patients insist, and sometimes it’s not good. Do you really want to have that extra CT and all that radiation just because you think it’s a good idea but you don’t really know because you’re not a medical professional? I’m not saying that to belittle people’s knowledge. I’m saying that we need to be humble when we come at the medical world. We know our symptoms. We should be responsible people and take care of our health in multiple ways, and really listen to what the doctor’s saying. And ask good questions. But sometimes when we’re demanding, our demands will be answered, and that will not be the best thing for us.
There’s another word you mentioned, and that’s a relationship. We should be at least comfortable with the relationship we have with our physicians for two reasons. The first reason is that you’re a human being and you deserve to feel that way in every interaction you have. The second reason is that it’s important for your health. When you feel the doctor doesn’t care about you as a person, you’re less likely to adhere to whatever they’re prescribing.
I’ve seen it, and it was astonishing because it happens with HIV patients where their stakes are very, very high. It happens with diabetes patients also. We don’t think of diabetes as so dramatic, but you could lose your eyesight, you could get into very unpleasant places. If you don’t feel the doctor cares, you’re less likely to adhere. You’re less likely to take good care of yourself. Who exactly are you punishing? You’re only punishing yourself. So try, to the degree that you can, to be in a relationship, be it fleeting or not, with someone you feel you can trust.
With digital health, it’s fascinating because sometimes you’re not interacting with a person, you’re interacting with a machine. But in a way, the same principles apply. You also should feel that you trust the system, that you understand what is happening, and then phenomenal things can happen.
But without these components, it’s just not going to work. If you feel uncomfortable with your physician or untrusting, don’t chalk this down and say, “Well, it doesn’t matter,” because it does. It actually does matter a lot.
What can we do? It’s a very complex topic. Sometimes you can’t do much, and sometimes the health system needs to be the one allowing for some more time, even creating protocols for connecting with the patient.
Just that little bit of human interaction of introducing yourself, of humanizing yourself, makes all the difference. I had a clinician once refer to me as “the tumor.” Why do that, especially in the clinical trials space? Poor communication is how you wind up losing billions, because so many trials never come to fruition.
I love that you mentioned that. I love that you mentioned the money. I have tried to mention the financial bottom line across the book. Now, why would I do that? My PhD is in psychology. I’m not an economist. You have to understand where people are coming from. Healthcare executives, they don’t want you to be upset, but it doesn’t really mean much to them.
But if you’re upset and leave or leave a clinical trial, that means a lot to them. I try to attach the psychological aspects to financial aspects, and to say, you’re not just doing this to be nice. Treat people as humans. It doesn’t have to take a ton of money and a lot of resources if you can program things that will make you feel there’s a connection.
That’s how you get fewer malpractice lawsuits, that’s how you enroll more people in clinical trials. Being attentive and empathetic is good capitalism. The fact that the healthcare system so often neglects that is shocking to me, because you could have a win, win, win, win, win.
It’s good for people’s emotions, it’s good for people’s health, it’s good for doctors’ emotions. They did not go into medical school, one would hope, in order to talk to tumors. They went into medical school in order to help human beings. If we retrain them to do that, which doesn’t take a lot of time, they could actually benefit from this. They’re experiencing enormous burnout. Part of the burnout is that you’re the tumor, I’m the provider, and none of us actually has a name. We’re fungible, and that’s a terrible place to be.
If instead of being the tumor, you’re “Jessica” and I am “Dr. Levine,” then we’re talking. We’re people. We have connected, and I go home with a smile on my face, and maybe you do too, or maybe you’re less upset than you were before. Literally everyone wins.
This leads to the big conversation, the hardest one to have in healthcare, about death. It is astounding to me how inept we are on all sides about talking about death, about preparing for death, about preparing for something that will happen to literally everyone. You have people going into the end of life feeling like failures, and feeling demoralized and marginalized. Let’s say I’m in good health right now. What’s something I can do right now to be thinking about these things and preparing? Because I am going to die.
I hope in many years in good health. But that is one of the certainties in life, for sure. I want to say something about the rhetoric of losing the battle to whatever. I know Americans don’t use the word hate. It’s a bad word. It’s a four letter word. I hate the rhetoric of losing the battle.
Me too.
I think it’s incredibly unfair. Everyone’s going to die. If you have a vicious cancer that takes your life, does it also mean you’re a loser? That is just an incredibly unfair way, in my mind, to frame death, and I wish people didn’t use that term. I understand why they use it. I understand their rhetoric of fighting and battling and I respect that, but I think really it could be hurtful.
It makes sense in a convoluted sort of way, because it creates the illusion that we are infallible. That if only we try hard enough, we’ll succeed. That’s really not the case. We can try hard, we can also decide we don’t want to try hard because it’s too difficult and we don’t believe there’s much chance of survival and we don’t believe the price is worth it. That’s another thing that is legitimate.
I want to say, and that’s parenthetical, my book is all about how to make decisions. It is never about what to decide. I don’t know what you should choose or your readers should choose. I don’t know them. I don’t know your preferences, I don’t know where you are in life. I do know you deserve to have a good decision making process.
We don’t like talking about death. We walk away from that. As a patient, even if you’re on your deathbed, you don’t want to upset your relatives. As a doctor, you feel you’re failing your patients or you can’t do anything for them, where in fact, what a lot of them want at these moments is just your honesty, your sympathy.
We’re all going to die, sadly. No matter how wonderful our doctors are, maybe they can’t save us. But they can be there with us, and that is enormous.
I propose to develop a new routine. I call it TAD, Talk About Death. I propose doing it on the day before milestone birthdays — 30s, 40s, 50s, et cetera. Why? Because works by myself and by people like Hal Hershfield at UCLA and with Adam Alter from NYU have shown that around these ages, something happens.
We’re in a more of a contemplative mode. We think of where have I gotten to in life? What have I accomplished? Where am I heading? What do I want? What are my hopes? What are my fears? Whereas when you’re turning 41, you might just go and grab a beer with your friends. It’s a different mindset. I thought, let’s use this contemplative mindset to talk about death. Let’s spend 30 minutes with our loved ones to talk about what I want to happen to me if I’m in a place where I’m close to death and maybe can’t convey my wishes. Do I want to be ventilated? Do I want to be intubated? Do I want to be kept alive? Or do I want my family to take care of palliative care for me and just let me go if that’s where I’m heading, because I don’t want to be connected to machines for the next 10 years?
That is my preference, and I want to make it known. If it’s a conversation that’s exceptionally hard for us to have, especially by someone’s death bed, let’s practice. It’s like running a marathon. You don’t just show up in Boston one morning and say, “Hey, I’m here for the marathon. I haven’t run since elementary school.” You have to practice. So let’s practice. And by saying that, you have shared them with your loved ones.
If you TAD, if you talk about death with your kids, and your spouse, and your friends, and your parents and everybody around a milestone birthday, then around once a year you will be having this conversation because someone’s milestone birthday is coming up, which becomes part of the jargon. And that is phenomenal. It takes the taboo out of it, because you can talk about that in the comfort of your living room the day before a big party. Not on someone’s hospital bed.
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