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Cardiac Spouses (transcript)
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(ANNOUNCER)       

Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association, an association of independent, locally-operated and community-based Blue Cross and Blue Shield companies, supporting solutions that make safe, quality, affordable healthcare available to all Americans.

 

(ANNOUNCER)       

Second Opinion is produced in association with the University of Rochester Medical Center, Rochester, New York.

 

(MUSIC)

 

(DR. PETER SALGO)          

Welcome to Second Opinion, where you get to see firsthand how some of the country’s leading healthcare professionals tackle health issues that are important to you.  Now, each week our studio guests are put on the spot with medical cases based on real life experiences, and by the end of the program, you’re going to learn the outcome of this week’s case and you’ll be better able to take charge of your own healthcare. And I’ll tell you something else too, there is a little secret hidden inside this show. We’re going to reveal it to you as we go along, but, I think if our viewers are careful and listen they’re going to figure it out. I’m your host, Dr. Peter Salgo, and today our panel includes special guest Roy and Lucille King, our second opinion primary care physician, Dr. Lisa Harris, Dr. Leway Chen from the University of Rochester Medical Center and Dr. Sam Sears from East Carolina University. Our patient today is two people. It’s a couple, Doris and Kent. Kent is 55 years old; he’s an Air Force pilot. He’s very active and as you can imagine he is in good health, very fit, doing whatever the Air Force needs him to do. His wife Doris is also 55 years old, she is very fit, she’s been a stay at home mom for their married life and they have two college aged children. Sounds like the ideal 55 year old couple. Right Lisa?

 

(DR. LISA HARRIS)

Just about. I assume you’re going to tell me a little bit more.

 

(DR. PETER SALGO)

Today we’re meeting Doris and Kent on a cardiac rehab unit. Two weeks ago they had just gotten home from a friend’s holiday party when Kent had a heart attack. He had what is called a large anterior myocardial infarction. Alright, you want to translate that?

 

(DR. LEWAY CHEN)

A heart attack in the big important part of the heart.

 

(DR. PETER SALGO)

But how could this fit, healthy guy have a heart attack?

 

(DR. LISA HARRIS)

I think we assume that because people are engaged in physical activity that necessarily means they are fit. There are genetic predispositions for coronary disease so we haven’t talked about that. We don’t know if he’s a smoker or if he has high cholesterol or high blood pressure or anything else that might have impacted that on his history.

 

(DR. PETER SALGO)

That’s all I have here is that he was healthy and then bang out of the blue, his heart attack. Now Roy, you can relate to Kent I suspect.

 

(ROY KING)

Yes I can.

 

(DR. PETER SALGO)

Tell me a little bit about that.

 

(ROY KING)

I remember my heart attack. I had walked that morning as I exercise for a number of years and I went to work. I sat at my desk; I had a meeting at 9:30 in the morning. I started sweating, just sweating, no pain or anything like that, and I knew there was something unusual about it so I called my daughter and umm and said I think I’m having a heart attack. And I said well something is wrong here.

 

(DR. PETER SALGO)

Now why did you call your daughter?

 

(ROY KING)

Well, she’s my daughter and a physician so she came right down to the Hall of Justice, tested some things and I’m looking at her and knowing her as my daughter I knew there was some, I was in trouble.

 

(DR. PETER SALGO)

You said the hall of justice, you were a judge?

 

(ROY KING)

Yes, yes, I was a city court judge.

 

(DR. PETER SALGO)

Mm-hmm. Kent is surprised he had a heart attack, were you surprised?

 

(ROY KING)

I was. I am looking back now with hindsight I guess you can say that my diet wasn’t what it should have been and some of the things I was eating at the time probably contributed to it. But I was surprised because I thought I was in relatively good condition. I had somewhat of an exercise regimen so I was somewhat surprised.

 

(DR. PETER SALGO)

Well, Lucille, he’s now in trouble.

 

(LUCILLE KING)

Mm-hmm.

 

(DR. PETER SALGO)

And you had to go down there and see him, be with him. What was it like at the hospital knowing that your husband had had a heart attack?

 

(LUCILLE KING)

It was frightening, it was very frightening. I wasn’t sure exactly what had happened.

 

(DR. PETER SALGO)

Your very first thought, your husband had a heart attack.

 

(LUCILLE KING)

I thought he was going to die.

 

(DR. PETER SALGO)

This is common, is it not?

 

(DR. SAM SEARS)

It is and I think part of what is so stunning is that often they come out of the blue. In both cases relatively healthy people, having a heart attack and then a spouse having to react with assurance and confidence, and without a lot of information. And it’s a very tough situation.

 

(DR. LISA HARRIS)

Unfortunately when we’re talking about hearts attacks the medical community is focused on saving that person’s life so we don’t spend a lot of time speaking with the family and informing them about what’s going on.

 

(DR. PETER SALGO)

Kent’s in the hospital. He’s calm, but Doris, she’s upset, she is hysterical. Is this typical?

 

(DR. SAM SEARS)

It is. I often go in on a consult to meet a patient and I’ll ask the patient a question. The patient will give me an affirmative answer but the spouse behind them is going “no way that’s not how it is. That’s not how it is”. So there is this discrepancy between the two people.

 

(DR. PETER SALGO)

So we have two states of mind here. We have a calm patient. You sound as if you were calm.

 

(ROY KING)

I was calm when I went in to the hospital initially. But whatever happened thereafter I don’t recall until I was, I guess, in the recovery room.

 

(DR. PETER SALGO)

And you, you weren’t quite so calm.

 

(LUCILLE KING)

Yes and no.

 

(DR. PETER SALGO)

Tell me about that.

 

(LUCILLE KING)

I was upset because I didn’t have the information that I needed to have to know exactly what was going on because they were focusing on treating him. And so what I did is I called us some medicists. I called my pastor and he sent some medicists from my church over to pray with me while I was in the waiting room. And that helped quite a bit to calm me down.

 

(DR. PETER SALGO)

By the way, where was your daughter during all of this?

 

(LUCILLE KING)

I don’t remember where, where you were? Where you with us?

 

(DR. PETER SALGO)

Just now when I asked you “where was your daughter” you looked over to my left and asked “were you with us”? Lisa, you might as well let the secret out.

 

(DR. LISA HARRIS)

Well I am their daughter and the circumstances were a little different. He actually called my mother first and said he was sick to his stomach.

 

(DR. PETER SALGO)

This is a family disagreement apparently.

 

(DR. LISA HARRIS)

Just a tad.

 

(DR. PETER SALGO)

You can share that with us.

 

(ROY KING)

Did I?

 

(DR. LISA HARRIS)

Yes, you did. You hung up on mom, she then called me and you called at the same time to my office and said “I don’t have pain it’s just nausea” and hung up. At which point I came down to the Hall of Justice since it was readily apparent that you had something.

 

(LUCILLE KING)

I had called her because he had said that he felt nauseous and that he was sweating profusely.

 

(ROY KING)

I don’t remember the nauseousness.

 

(LUCILLE KING)

You don’t remember a lot.

 

(DR. LISA HARRIS)

And it was quite clear when I got to the office he was doing the classic Levine sign where he was clutching his chest, leaning forward, sweating, and breathing very heavily so it was pretty apparent that there was something cardiac going on.

 

(DR. PETER SALGO)

I want to talk about the state of mind now of the spouse, of somebody who’s had a cardiac event. Is it important to the outcome, both for the person who has had the cardiac event and going forward to the entire relationship, to deal with this mental status early and to evaluate it?

 

(DR. SAM SEARS)

Well there is good data on this; this is not a theoretical question. There is good data that both spousal confidence and spousal understanding actually does relate to the outcome prospectively so over time that the well-being both from a mortality and a morbidity perspective is affected by spouse confidence.

 

(DR. PETER SALGO)

Alright, well Kent is now in outpatient cardiac rehab. What is it? I mean obviously he’s not in the hospital anymore he’s an outpatient.

 

(DR. LEWAY CHEN)

Right, so he’s done well enough to leave the hospital and cardiac rehab is a program to encourage healthy behaviors, exercise and a lot of post event care to make patients better.

 

(DR. PETER SALGO)

Doris, now, is overseeing his medications, overseeing all of his doctor’s appointments. She’s beginning to joke and calling herself his medical secretary. Is that your experience?

 

(LUCILLE KING)

Yes, and one of the things that I want to say about cardiac rehab, the program that he was in was very effectual for the spouse because what they did was they brought both of us in initially so that I would have a full understanding of what it was that he had to do diet wise, exercise wise, with his medications, working with a cardiologist, all of that. That was extremely important in the beginning.

 

(DR. LISA HARRIS)

And there’s something here that’s floating under the surface that we haven’t really gotten to yet. This is an Air Force person, so someone who’s used to being in command, used to being in charge, has had all of that suddenly taken from him and now his spouse has had to assume some of the leadership roles and there is a lot of psychodynamics that occur.

 

(LUCILLE KING)

And this is a judge that is used to giving orders. Ok?

 

(DR. PETER SALGO)

How common is it in cardiac rehab for the spouse to be brought in right away and involved in the whole program?

 

(DR. LEWAY CHEN)

I think they like to do that and it’s great to have a spouse who can be there and that definitely it adds to the care during that period of time.

 

(DR. PETER SALGO)

So let me move the story forward just a little bit. It’s a month later. Kent is officially medically retired from the Air Force. Doris is still overseeing all of his medications, all of his appointments, and now she has got the added burden of making sure that he eats a healthy heart diet, every meal, every day. She’s also hammering at him to walk everyday with her and she’s also doing all of the housework and all of the yard work. Now there kids come home from college to help out when they can but says the chart, Kent’s job has become to get healthy. That’s his work, and Doris’ job is to take care of everything else. How worried are we now, not so much about Kent, but about Doris?

 

(DR. SAM SEARS)

Well, again you know, change in one person in the family creates change in others. This is a perfect example where heart disease creates changes for the patient, in this case Kent, but also in the spouse. Those changes are stressful, there’s additional responsibilities, there’s already there their emotionality, their grief essentially from what happened. So there are significant changes across the board.

 

(DR. PETER SALGO)

But here we are talking about her when Kent’s the guy who had the heart attack, right? He’s the one that had the life changing, death defying moment.

 

(DR. SAM SEARS)

It turns out that if you look at these studies that the spouses, cardiac spouses, have very similar, in some cases more, psychological stress than the indexed patient. Even in the case here we’ve learned that Lisa’s dad didn’t even remember all of the things that went on but her mom very much remembered.

 

(DR. PETER SALGO)

Ok. Well, Lucille, what were those first few months like for you after the heart attack?

 

(LUCILLE KING)

It was a lot of change that was going on and I became like the superwoman taking care of everything, changing his diet, making sure that he exercised. One of the areas of conflict that we did have is he was just chasing at the bit to go back to work.

 

(ROY KING)

I wanted to go back to work.

 

(LUCILLE KING)

He wanted to go back to work and I felt that if he went back to work he might have a second heart attack, that he needed to learn how to relax. So there was some tension there.

 

(ROY KING)

I love my profession and I wanted to do what I wanted to do and…

 

(DR. PETER SALGO)

But she wanted you to do what she wanted you to do.

 

(ROY KING)

Well that is true, I didn’t like this idea of being babied and feeling as if I was…

 

(LUCILLE KING)

Like, helpless?

 

(ROY KING)

Helpless. So allow me to do what I have to do.

 

(DR. PETER SALGO)

But isn’t that a classic conflict? We’re trying, the spouse, trying to protect this person who is now in a vulnerable medical state or at least the spouse thinks so. And at the same time we got to give the fella or the woman that has had the heart attack some rope to get back to living.

 

(DR. SAM SEARS)

Yeah, it really is. That’s very much a typical situation. Wanting to go back to work is part of how you gain control back over a pretty uncontrollable experience. At the same time, taking good care of him and expressing how much she’s pleased that he’s back and alive, she’s going to give it all she’s got too. So, there’s the tension is immediate and both of their hearts are in the right place.

 

(DR. PETER SALGO)

At what point does the health care team step in? At what point does a cardiologist say “I know this is going to happen. I want you to both be aware, maybe, and deal with it”.

 

(DR. LEWAY CHEN)

Well I think we recognize this in fact and at outpatient clinic visits we really like it when both the spouse, or significant other, and the patient come together, it’s so important. We know that it’s a team effort for a bigger team so yes, all the time.

 

(DR. LISA HARRIS)

I think medical professionals are learning that a little bit better. What I recall when dad was in the hospital was the cardiologist coming in and telling him that “you can’t do this, you won’t be able to go back to work, you won’t be able to do this” and took away all of his liberty and all of his self-esteem and self-assurance. He sat there in the room and said “What am I gonna do?” and I actually intervened at this point and went to the cardiologist and said “He’s sedentary, he’s sitting on the bench. Is there any reason he can’t work in the morning and do cardiac rehab in the afternoon?” So I think we have to learn a little bit better how to incorporate the lives of our patients in to the medical regimen that we have.

 

(LUCILLE KING)

And here I was thinking this type A workaholic husband that I have was finally going to learn how to relax.

 

(DR. SAM SEARS)

But what we want to do usually is give folks some strategies so that they can still be who they are but find some ways to cut the edges off a little bit.

 

(DR. PETER SALGO)

Take us a little further along in your story, because that heart attack wasn’t the end of your heart trouble was it?

 

(ROY KING)

No it wasn’t

 

(DR. PETER SALGO)

What happened?

 

(ROY KING)

Some years later, my heart function according to my cardiologist decreased. I was advised that I could make two choices, either let it be and maybe one day as I’m walking around doing what I’m doing I keel over and that’s the end of it, or have a device put in and maybe that could be a backup. I talked with my family about it and I said well, I’ll get the device.

 

(DR. PETER SALGO)

So you had a defibrillator put in.

 

(ROY KING)

Yes.

 

(DR. PETER SALGO)

This is a device that shocks your heart if your heart has a rhythm which is not going to sustain life.

 

(ROY KING)

Right.

 

(DR. PETER SALGO)

Tell me a little bit about this Lucille. You were there when that decision was made and now he’s got this device. What were you thinking?

 

(LUCILLE KING)

I thought it was good in the aspect that if anything happened it would shock his heart and give him a second chance. But, the question and the concern I want to bring up is that I had a great fear of being intimate with him, because I felt that if we were intimate, if we were having sex and he got excited that he was going to die during the act and I really really had a real concern about that

 

(DR. SAM SEARS)

Well I’m so glad you brought that up. One of the things working with ICD patients and families to feel safe, to return to life, all activities, not just sex but all activities is an important one. It is the primary benefit of having a defibrillator. Certainly the device is there to save your life but the psychological benefit is to feel safer, to be able to return to life, return to work if you’d like, return to sex if you’d life, return to activities. Whatever it is it’s that perception of safety that I think is the crucial element here and that has some individualism to it. We have to help our patients understand this is a technology that produces security.

 

(DR. PETER SALGO)

Alright, I want to pause just for a moment, take a little breather, sum up what we’ve been discussing so far and then we’re going to launch back in to this discussion. The recovery from a cardiac event often involves the whole family. The well-being of the caregiver is as important to the patient’s outcome as anything else. Fair enough? Lucille, do you agree?

 

(LUCILLE KING)

Yes.

 

(DR. PETER SALGO)

Do you all agree about that?

 

(EVERYONE)

Yes. Absolutely.

 

(DR. PETER SALGO)

Well our case today is Kent and Doris. Kent recently had a heart attack and he is now going through outpatient cardiac rehab, and we have with us Lucille and Roy King who are sharing their story, and I might say their lovely daughter, and my friend. It’s now five months after Kent’s heart attack and Doris is no longer making jokes about being his medical secretary. In fact she’s tired. She’s depressed. She is resentful of her husband and his seeming disability. What’s going on here?

 

(DR. SAM SEARS)

Well, good short term plans have gone on too long.

 

(DR. PETER SALGO)

What does that mean?

 

(DR. SAM SEARS)

Well good care and things that made sense early on need to begin to change over time and again it tests the flexibility of the relationship and the individuals involved.

 

(DR. LISA HARRIS)

So no one had a discussion with her about when do you let go, and when do you allow him assume some of the responsibility, and how do you transition from that?  And she’s continued in that role as primary caregiver without any relief.

 

(DR. PETER SALGO)

Lucille, first Roy had a heart attack and you were taking care of him. Then he needed a pacemaker and a defibrillator and you’re taking care of him. Nobody asked you this question so far, I’m going to ask it. How’s your health at that time? What happened?

 

(LUCILLE KING)

I was diagnosed with congestive heart failure.

 

(DR. PETER SALGO)

Your heart began to have trouble

 

(LUCILLE KING)

Yes.

 

(DR. PETER SALGO)

What did you think at that point?

 

(LUCILLE KING)

I thought what else is going to happen, ok? What’s the next thing that’s coming down with all of this stress and everything? So I thought I was going to end up like Roy and when I was working with my cardiologist my doctors found out, became educated about congestive heart failure and the differences. I said well Roy; he’s got to fend for himself. I got to cut him loose because I have to be concerned with my health now.

 

(DR. LISA HARRIS)

What happened with my parents is that my mother was having symptoms for months and didn’t say anything to anybody. She was crawling up the stairs short of breath and not saying anything to anyone about what was going on.

 

(DR. PETER SALGO)

She ratted you out.

 

(DR. LISA HARRIS)

Yes I did.

 

(DR. PETER SALGO)

Ok, why were you doing that?

 

(LUCILLE KING)

Superwoman syndrome. I had to take care of the house and everything and I had to be concerned about him and making sure he that was doing the right things. So if I was not feeling well I would get over it.

 

(DR. PETER SALGO)

You didn’t take any time for yourself?

 

(LUCILLE KING)

No time.

 

(DR. SAM SEARS)

I mean it’s an uncommon courage and love at some level but that’s the kind of things I see a lot in practice. I see tremendous compassion and concern and love, even to the point where she neglected her own symptoms. But then there becomes a breaking point where if something doesn’t change then we’re going to have two people not doing well. It’s important.

 

(DR. PETER SALGO)

How did this affect your relationship?

 

(ROY KING)

I was thinking how the children closed in around us as a family unit and helping out in some way, in many ways. Lucille mentioned sexual relations also because of my age that had an effect on it. As I said my working and getting back to work was important to me and in doing that I did not even realize some of the things, how this was impacting Lucille. So it’s very difficult to put a handle on it so to speak.

 

(DR. PETER SALGO)

Is your relationship, do you think, better now…

 

(ROY KING)

Oh yes.

 

(DR. PETER SALGO)

…then it was at that time, and maybe even better because of it?

 

(ROY KING)

Oh yes, no question. A lot of it’s better. We been at this business of marriage of fifty years plus, so we learn those personality traits.

 

(DR. LISA HARRIS)

Dad learned to be a little bit more understanding because of the effort that mom was putting in. She learned how to relax and let him do the things that he needed to do so that they were…

 

(DR. LEWAY CHEN)

As health care providers for our case and for you that we would have been more helpful along the way to assist you through this.

 

(DR. PETER SALGO)

It’s often the case that you’re not.

 

(DR. LEWAY CHEN)

Right.

 

(DR. SAM SEARS)

But I think were tricked there as health care providers because all the way down to documenting the medical record and billing insurance, there’s one patient. Even though knowledgeable experienced health care providers recognize this is a family, but it’s one person that we’re supposed to be focused on. And so we’re tricked in to that a little bit. I think we’re tricked in to a myopia around just the single patient.

 

(DR. PETER SALGO)

Well let me tell you a little bit about Kent and Doris because they really didn’t do as well the two of you did. Doris felt she had to do anything. She also felt that she no longer had a companion and she also said, “Well my problems are inconsequential. He had a heart attack, he doesn’t want to hear about my problems”, and she wouldn’t talk with him. So they were no longer intimate, both psychologically and physically. She felt tired, she was depressed, and her daughter said “go to the doctor”, and what do you think the doctor discovered because she did go?

 

(LUCILLE KING)

Probably told her she had depression and gave her an antidepressant.

 

(DR. PETER SALGO)

Well depression was part of the diagnosis. He found that she was hypertensive and that she was gaining weight even though she was on an exercise program with Kent. So, are these typical problems in spouses who’ve been through the mill with a husband or wife?

 

(DR. LEWAY CHEN)

Sometimes. Sometimes there’s a shared environment that certain diseases become prevalent in both spouses but I think in this case there’s a lot of the reality of what she’s been doing to keep him going, neglecting her care.

 

(DR. SAM SEARS)

That’s the focus of our work at East Carolina is how to help patients both deal with the after effect of both the heart attack, the cardiac arrest, or even the ICD shock when necessary. I think part of this comes back to making sure we help patients begin to see themselves as survivors and not victims. Help our patients re-engage in life and re-engage in relationships because otherwise there’s a very natural withdrawal process and that’s what we want to prevent and that happens, and you mentioned it in the cases, both emotionally and physically. It’s a pull back where oh, I can’t have strong emotions and I can’t do strong actions, if you will, or engage in behaviors.

 

(DR. PETER SALGO)

Well Doris’ doctor puts her on an antidepressant and blood pressure medication and suggests that she get counseling. What should he be doing for her if you don’t think that’s enough, Lisa?

 

(DR. LISA HARRIS)

Well I think he needs to engage both of them and find out what’s happening in the home and make sure that the two of them have an understanding that they have, essentially, codependent diseases and that there are things they can do together. He hasn’t at all addressed her anger or how to make that switch to allow the husband to become more independent and advocate for his own health care.

 

(DR. PETER SALGO)

Well let’s pause for just for a minute here because I do want to sum up a little bit what we’ve been talking about. Recovering from a heart attack or heart disease is not something that any patient does alone. The family needs to recover as well and often needs just as much support, if not more, than the patient does and you’re not even hearing the little whispered comments I’m getting in my left ear from the daughter over here. I want to continue a little bit more because I have some more information for you. It’s about a year now since Kent’s heart attack and Doris was forced to go out and get a job because Kent’s not working, he retired from the air force, they’ve got expenses and to her surprise she loved it. She loved her independence; she’s got a whole new circle of friends. She and her husband Kent are still living together, they spend very little time together and they lead separate lives.

 

(DR. SAM SEARS)

Well certainly the growth associated with becoming independent and getting this job, there sounds like there are some good things there but clearly it’s a partial step back to have the loss of the intimacy, the loss of useful communication, the loss of almost empathy, the ability to appreciate where each other are coming from. It’s a disappointing outcome to see two separate lives developing. The other thing is, again, that can be addressed and those are not, the die is not cast on that.

 

(DR. LISA HARRIS)

And you also, well it’s not brought up on this chart on this case, what is the impact on the children?

 

(DR. PETER SALGO)

What was it like for you? Dad had a heart attack, mom had heart failure; both of them they end up on devices. Take the doctor hat off; be Lisa the daughter just for a minute.

 

(DR. LISA HARRIS)

It was very frightening. Very very frightening. I knew that the rest of the family was looking at me for answers and for support and for strength and to know what to do and how to react. So it was very very very frightening.

 

(DR. PETER SALGO)

Your outcome has been tremendously different than Kent and Doris. Why?

 

(ROY KING)

One of the ways I think probably, and I could look at – I still believe in working and being involved but what Lucille and I have done is to bring each other in to what we are doing, even in the community things that we do, or I do. She’s part of it. As far as housework and so forth we share that, the things that she can’t do I can do.

 

(DR. PETER SALGO)

I want to thank all of you for being here. It is a joy to meet you both and I’m just delighted…

 

(LUCILLE KING)

Thank you.

 

(DR. PETER SALGO)

…that you are doing as well as you are. Unfortunately we are out of time but I hope that you continue this conversation on our website. There you are going to find the transcript of this show, more videos about cardiac spouses, links to resources. The address is secondopinion/tv.org. Thanks for watching, thank you all for being here. I’m Dr. Peter Salgo and I’ll see you next time for another Second Opinion.

 

(MUSIC)

 

(ANNOUNCER)                   

Major funding for Second Opinion is provided by the Blue Cross and Blue Shield Association, an association of independent, locally-operated and community-based Blue Cross and Blue Shield companies, supporting solutions that make safe, quality, affordable healthcare available to all Americans.

 

(ANNOUNCER)       

Second Opinion is produced in association with the University of Rochester Medical Center, Rochester, New York.