What to Do When You Get a Devastating Diagnosis

GUEST: Jessie Gruman, Ph.D.
VTR: 03/05/07

I’m Richard Heffner, your host on The Open Mind.

And my guest today is social psychologist Jessie Gruman, whose new book After Shock – What To Do When The Doctor Gives You Or Someone You Love a Devastating Diagnosis, is praised by CBS 60 Minutes Correspondent Leslie Stahl as “A how-to on getting the best care, the book is both reassuring and empowering”.

Many others have responded as enthusiastically to After Shock.

Dr. Robert Butler, distinguished President of the International Longevity Center, calls it “a humane and immensely important book about coping with a catastrophic illness”.

Dr. Jimmie C. Holland of Memorial Sloan Kettering Cancer Center says it is “filled with practical advice mixed with the observations of someone who has ‘been there, done that’ who also knows the psychological terrain of illness. Gruman recognized the gap in information for this period and has filled it beautifully.”

My guest’s own very first words are also quite direct, “This is a book about what you must do to take care of yourself while your heart is breaking.” And I would ask Jessie Gruman what that must be. What must you do?

GRUMAN: Ah, well, that’s what we’ll talk about now. When I … the most recent time when I was diagnosed with … got a bad diagnosis … I felt as I had the previous three times, I’d been diagnosed as though I’d been drop kicked into a foreign country and I, I didn’t know the culture, I didn’t know the language. I didn’t have a map. And I just desperately wanted to find my way home.

And I thought after this little episode was resolved … what … what could this be like for someone with neither my experience … having gone through this three previous times. And my expertise … this … figuring out what health information people need in order to take care of themselves … is what I do for a living. What must it be like for others who don’t have that experience and they don’t have that expertise to go through this … getting this sudden news that your life is going to be altered in some unknowable way.

I was in despair. I was flummoxed, I was confused. I was in disarray. And I know that others were, too. And so I wrote this book to … not to provide a map for people when they get a bad diagnosis. But to help them figure out how to make the map of their own way back home.

HEFFNER: Why do you say, “not to make a map”?

GRUMAN: Well, because … you know the thing that I’ve noticed when, when I was going through this the most recent time was that the … that the skills and the knowledge that you need, initially, are the same no matter what your diagnosis.

But after you’ve kind of figured out what the treatment is going to be and what the doctor … what doctor is going to take care of you and how you’re going to proceed, then the illness starts to, to create for you, with you a, a map that’s unique to your situation. But at the beginning, whether you have a diagnosis of ALS, or MS, or pancreatic cancer or breast cancer or a bad heart condition … you still have to do the same basic things. And that’s what this book talks about. What are those ten things that you really need to focus on during the initial phase of the arc of your illness, just after you get your diagnosis.

HEFFNER: And you think that you can identify ten or eight or five or four things … the first and second and the third that hold true for …

GRUMAN: For everybody.

HEFFNER: … everyone.

GRUMAN: Yeah.

HEFFNER: What’s number one?

GRUMAN: Well, number one is get through the first 48 hours. You know when you first get the news of a bad diagnosis, you really are thrown for a loop. You’re in crisis and it’s important to, to treat it as though it’s a crisis.

Your responses are probably not reliable. You don’t know what’s going to happen next. And you’re really in shock. And so getting through that period of time and moving on to the … you know, exactly what you’re going to do is a really … it’s a time when you’re vulnerable and it’s important to know kind of how to handle it and what the parameters are during that phase.

HEFFNER: Are you saying “hold on”, “hold off”.

GRUMAN: Well, yeah, I think there are three things particularly during that … those first 48 hours.

One is that you will not always feel like this. You know when you get that diagnosis and your heart is breaking … you think, “I am always going to feel this bad. It’s always going, going to be this terrible, this terrifying …” and that’s not true, but you feel like it is. And so one of the important messages during those first 48 hours is that as you get more information, it’s going to … things are going to feel differently and they’re going to feel better. But right now you are pretty upset and pretty confused and in despair.

The second thing that’s very important is to pay attention to that sense of urgency. You know one of the things that happens to many people, and I talked to over 200 people in writing this book, and all of them talk about this …you know they get their diagnosis and they think, “Oh my gosh, I have to do something about this immediately.”

And they want to get … if it’s cancer they want to get it cut out. If it’s MS, they want to start the medication immediately. And you know, if you’re that sick that you have to start your treatment immediately, you’re probably already in the hospital. So you really do have some time to gather some information, to find the best person to treat you; to make some choices amongst all of the different things that you might do to response to this illness.

So, again, the first thing is … ahmm, that you really are in shock. The second thing is that you probably feel some urgency to take care of things, but that you really don’t need to respond to them.

HEFFNER: But I am aware of the fact in reading After Shock, the numbers of times that I think you own advice would be “don’t let this drag, time is of the essence.”

GRUMAN: Well, it’s … you’re, you’re right to pick up on that because on one hand there is this, this need to resolve things and to, to move along. People … a number of people I talked to, got in the situation where they kind of used looking for different doctors and different treatments as a way to kind of put off actually taking care of and responding to their illness.

On the other hand I talked to many other people who gave in to that sense of urgency and regretted it because they either were treated prematurely and for a diagnosis that wasn’t ultimately the diagnosis that they had.

I talked to one woman whose, whose own physician was on vacation and so she just … she just got another surgeon and she had surgery right away. And the surgery was unsuccessful and she spent many months recovering from it. And her doctor said, “What could you have been thinking?”

And she said, “Well, you know, in hindsight, I was thinking if I can just take care of this so quickly then maybe, maybe it’s not such a big deal.”

HEFFNER: Jessie, you know so much about medicine and medical things … not just because you’ve been there, done this, but because of your own professional involvement. Do you think we were better off when there was one doctor. We knew there was one god … one … in New York we …

GRUMAN: (Laughter)

HEFFNER: … knew there was one Mayor and one Governor and, of course, there was one President. But there was one doctor and we didn’t go hunting around. And the doctor told you what to do.

What’s your sense of whether we’re better or not better off now that we do … we go to the Internet and you mentioned that. And you urge upon us some of the Internet addresses to avail ourselves of. Better off? Or not so?

GRUMAN: Well, I think that’s a very … I think that you’ve touched on a very important and interesting problem. And what we are experiencing with all of these choices is, in part, due to the successes of health research and medical care.

There are very few conditions now where there …where people don’t have a choice of treatments, even if one of the treatments is watchful waiting. That is waiting to see if things develop, as symptoms develop, as a disease develops. And there are … and, and theirs is very rare that there’s only one physician who is the right physician for you.

I think it was telling to me that of all of the physicians I interviewed … and I interviewed many specialists and primary care physicians as well as advanced practice nurses and every single one of them said that they would not embark on treatment for a life altering condition without getting another opinion.

So, you know, we’re … we have this amazing array of choices, but at the same time that puts a tremendous burden on us as patients to make decisions and to make decisions that we often don’t feel like we’re prepared to make. And that really is one of the reasons that I wrote this book is because … in the “old days” when we had one doctor and our doctor would tell us what to do and what specialists to see and what surgery we were going to get, we didn’t have to make those decisions.

And now many of us don’t have even a primary care doctor. We get a diagnosis from someone we’ve never heard of before … the radiologist or some neurologist we’ve been sent to or something. We don’t know if we can go back to our primary care doctor to help us decide whether this doctor is the one who should treat us or to refer us to the right one. And then we need to gather opinions from other, other physicians to find out, really, what our treatment options are. It’s a tremendous burden on people, especially when they’re under the kind of stress that you’re under when you have just received the kind of devastating diagnosis.

So part of what I am trying to do in this book is to say we can divide these tasks into manageable parts and here’s how you need to think about this.

For example, many people find the very notion of getting second opinions daunting because they’re afraid to tell their first physician that they don’t … that they want to seek other advice as well. And that can be a very, very difficult for people. So the book really kind of goes through and says, “this is …these are the conditions under which you really want to seek the second opinion. Most people would like to seek a second opinion anyway and here’s how you can handle it with your own physician.”

HEFFNER: You’re very diplomatic, too, as you …

GRUMAN: Indeed.

HEFFNER: … suggest how to say this to the nurse you’re calling about what you’re calling for and how to tell your own doctor about what it is that you’re seeking.

GRUMAN: Well, you know, it was very … when I started writing this book I had so many ideas that were changed over time, through the interviews with the people I talked with about their own experience, going through these kinds of things.

I would never have thought when I first started writing this book that a chapter on how to get care quickly would have been important. But, indeed, it was one of the things that people talked about again and again. That they didn’t know how to represent their illness to a busy specialist so that they would get seen quickly.

That they really were uncertain about how all of this, you know, managing all of your medical information and your tests, how could you coordinate all that to make sure that you weren’t held up by laboratories and health care facilities that couldn’t get your information from one place to another.

You know we’re at such a funny time in some ways with, with this very complicated and fragmented health care system. Soon, hopefully, we’ll have an electronic medical record that will travel with us and we’ll carry with it all of our test results and our health history and our allergies and all that.

But we don’t have that right now. And as a result, it’s not only the people have the burden of finding the right doctors to treat them. But they also carry the burden of managing their medical information. And for people with complicated illnesses that can be a lot of information.

HEFFNER: But you know, as I read your section of After Shock on that subject … I kept thinking and then you mentioned her name about Ms. Goldman who is so worried about this bringing about violations of our privacy.

GRUMAN: Oh, the electronic medical record?

HEFFNER: Yeah.

GRUMAN: Well, I think she’s wise to be worried about it. And I … there’s a section in the, in the book that is entitled “What You Need to Know About Your Privacy” and it starts out by saying, “Now is a time for a few words about privacy and you probably don’t want to hear about this right now, but it’s very important for you to … ah, since … once you enter into the health care system, you’re going to be signing away your … various part of your own private medical information almost every time you walk in the door and it’s important for you to do that … understanding what that means and what the limitations of that are”.

I think … I think Janlori Goldman who runs the medical privacy

HEFFNER: Mmmhmm.

GRUMAN: … I think she does a wonderful job and was very wise … is very wise to really raise these issues in the eyes of, of people who are ill.

But as I say, unfortunately, one of the things that happens to us, especially at the beginning of an illness like this is we kind of say, you know, “full steam ahead and damn the torpedoes. We don’t care about our privacy, we just want to get this fixed.”

HEFFNER: Do you think that’s what most people feel?

GRUMAN: At the beginning of an illness I do. I do. I feel like people are … people just want so much to get resolution and to know what’s going to happen next.

I think after the first two or three weeks, things calm down, they settle into a pattern. There’s some sense of what the time horizon is, what you can expect, what’s going to happen next. But at the beginning of illness, that’s not the case. And at the beginning of the illness is the time when you need to make all of these decisions. You need to … all of a sudden acquire this incredible amount of expert knowledge in order to be able to get the best for yourself.

HEFFNER: You know, I was thinking, as I read After Shock, about the many people you had interviewed and I was thinking to myself about how lucky so many of them obviously were in having family and friends who are helpful at this time.

Now, did you just happen to pick people who were lucky, or do you think that more, rather than less, we do have … most of us … family and friends who help.

What … what did you come away from all these interviews with?

GRUMAN: I came away from these interviews thinking that this … that the very, the very notion of how we involve others in our lives when we’re ill is deeply dependent on our own personal preferences and our own histories.

I’ve talked to people who had absolutely no interest in sharing this time with others. They made all their decisions themselves, they saw all their doctors by themselves. They became experts themselves in this … their disease.

I talked to others who were on a path … they were not interested in their disease, they were going to take the minimalistic approach, this was the way that things were going to be for them. And it had to do, for some of them, with their religious faith.

I talked to people who were alone, not by choice, who really struggled to get the kind of support that they wanted and needed.

I talked to one woman … actually a minister … who had two little children, she was on her own, she was very, very ill and she called someone who had asked her … who had told her that they would be willing to help whenever she needed help and asked this person to pick up some milk for her and this person said, “I can’t do that.” And it was just devastating to the minister, this woman who just needed some milk for her little kids.

So I think that … and then I … of course, I talked to people who were just, who reveled in the support of their friends and their colleagues at their work places or these large extended families.

And then, of course, you know, you have to also take into account that there are people who have large, extended families who are not particularly good sources of support, but are rather sources of conflict.

So I think it … you know, if this table represented the varieties that were possible, you would see that. I think that one of the things that I came away with was that it’s a very rare thing for people not to need to have their illness and their situation acknowledged. And for support to be offered. It’s their choice whether they accept it or not. But the very notion that there’s an elephant in the room … everyone knows that you’re ill and to, to ignore that is the wrong thing. And people do need support.

HEFFNER: I was so impressed in After Shock, one of the many, many people … experts and journalists and others who commented on the book. One of them in particular referred to the appendices. And I went back and looked at each of the appendices and thought, “My god that’s right” because you offer so much information about where you, as an individual, who are in shock, or coming out of shock, can turn.

And I mention the, the Internet …

GRUMAN: MmmHmm.

HEFFNER: … because I know I went there first …

GRUMAN: Right.

HEFFNER: … and I don’t even know why because I am so non-electronically oriented …

GRUMAN: (Laughter)

HEFFNER: … but I did. And obviously from what you write … there are many, many, many places to go.

GRUMAN: My … my … one of my strategies in writing this book and particularly in the appendices … was to say, “you know if you’re someone who feels like there are so many choices and so many options, I don’t’ know how to make sense of these.” What I try to say is, “Here’s a good place for you to start. These are some really good, trusted resources, where you can start your search.”

And then for people who really don’t want to know anything and would prefer to … that this whole thing would just go away … I try to say, “you know, you, you have a few choices, you need to know a little bit. Here’s what you need to know and here’s how you can find it.” So someplace in the middle is what those appendices represent.

They represent really good choices for how to start your search, whether you need a whole lot of information in order to feel more comfortable, or you just need enough to be able to make the decisions that will help you get the treatment that you need.

HEFFNER: Jessie … given the shock … are we … should we be thanking our lucky stars that we are involved with this our … American medical system? Or should we be wishing, “Gosh, I were in England? I wish I were in Germany? I wish I could avail myself of what they have to offer?” What about our medical system?

GRUMAN: Well, our medical care system is, ahmm, looks very different depending on who you are.

I’ll tell you that if you have a devastating diagnosis and you don’t have health insurance, our health care is a … very daunting and difficult edifice to encounter.

It’s … it is such an expensive thing to be ill now without insurance.

HEFFNER: And how many uninsured people do we have?

GRUMAN: 47 million people are uninsured.

HEFFNER: My god.

GRUMAN: That’s a lot of people. And it … when you think about the number of people who get … in a given year … have a diagnosis of cancer, heart disease or diabetes, or Alzheimer’s disease or dementia … I mean all of these things are things that really just … well, Parkinson’s is just … “oh, my gosh, my life is going to be different.”

You know it’s like being in a dark hole is some ways. It’s like … not only is it really dark, but you are … just as in a dark hole there’s concentrated matter and when you get a devastating diagnosis you have concentrated contact with the medical care system and that means that … and every time you do, if you don’t have insurance, you pay money.

Now even for people who are covered by Medicare, a devastating diagnosis can cost a tremendous amount of money and for … not only for yourself, but for your family who needs to pitch in and care for you.

People who are covered by Medicaid … we, we like to think that Medicaid coverage gives the same quality of health care that does regular private healthcare coverage. But there are few people who are actually in the situation of providing care under Medicaid or receiving it, who would say it’s exactly the same as getting care with regular health care coverage.

And then there are a number of people … a growing number of people who have high deductible health plans, where, in order to … in order to have their health care …their catastrophic health care kick in … need to spend up to a specific amount of money … $5,000 or so and then and then they are covered by insurance, but often those plans are spotty as well.

So, I think that … in general I think we can say that our healthcare system puts a financial burden on almost no matter who we are.

And then there’s the issue of … really … having …unless you in a, in a group model heath plan like Kaiser Permanente or a Group Health Cooperative of Puget Sound, you are a free agent trying to patch together which doctors are going to care for you. If you have cancer you may have six, seven, eight doctors, who are … who are caring for you at any given time and some people find themselves in that situation with no one but themselves to kind of drive the ship. It can be very difficult and it certainly is taxing at a time when, if you’re ill, you’re not feeling particularly energetic or able to do the ship driving.

HEFFNER: I would say, if you will permit me to … all the more reason why your book is, is such a wonderful resource to have. Because you do point out to all of us who are going to suffer one way or another, financially, emotionally and otherwise … paths to, to take.

I would think there would be a great many people around this country saying, “Thank god for the beautiful woman who wrote this beautiful book.” And I want to thank you myself and ask just one more question. Is there … in the one minute we have left … is there one very, very specific bit of advice that you think is the best that can be offered?

GRUMAN: I think for those of us who are accompanying someone, who are the loved ones of someone who’s going through a devastating illness; there are three words that I think are very important to remember. One is privacy … that this is this person’s life, this person’s illness and they should be the one who decides who knows what about it. One is autonomy and that is that because it is this person’s life, this person should be the one to make the decisions. And the final thing is dignity.

HEFFNER: Jessie Gruman you are helping so many of us maintain that dignity. Thank you for joining me today on The Open Mind.

GRUMAN: It was my pleasure.

HEFFNER: And thanks, too, to you in the audience. I hope you join us again next time. For transcripts of today’s program, please send $4.00 in check or money order to The Open Mind, P. O. Box 7977, FDR Station, New York, New York 10150.

Meanwhile, as an old friend used to say, “Good night and good luck.”

N.B. Every effort has been made to ensure the accuracy of this transcript. It may not, however, be a verbatim copy of the program.