Chapter 11: Patient Reactions to News of Speech Loss

Chapter 11: Patient Reactions to News of Speech Loss

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Description

In this chapter, Dr. Goepfert explains how devastating it can be for patients to receive the news that they will lose their ability to speak because of a cancer of the head or neck. He the field is still struggling to find better ways to both preserve the larynx and its many functions. He sketches how the stage of the cancer determines the treatment that offers the best hope for preservation, but that existing treatments often fall short of what the patient and surgeon both hope for: full preservation of the power of speech. He gives an example of a member of Houston society who refused a necessary treatment, noting that some patients simply cannot “face reality.” He also describes how surgeons must help patients understand their options and how treatment will proceed, especially when they have gotten “second opinions by Google,” sometimes arriving at MD Anderson with stacks of printouts from the internet. Dr. Goepfert gives a final example of a banker from Dallas who committed suicide rather than face losing his voice. Dr. Goepfert offers his philosophy about suicide in the face of such news.

Identifier

GeopfertH_02_20120828_C11

Publication Date

8-28-2012

City

Houston, Texas

Topics Covered

The Interview Subject's Story - Overview; The Clinician; Patients; Cancer and Disease; Professional Practice; The Professional at Work; Critical Perspectives; Offering Care, Compassion, Help; Controversies

Transcript

Tacey Ann Rosolowski, PhD:

Dr. Goepfert, I mentioned before we began that I was hoping that you could take me through a particularly interesting or challenging case that you recall from your career so that I, and also the listener, can have a clear idea of what you do as a clinician who is intervening in head and neck cancers.

Helmuth Goepfert, MD:

One of the important issues in head and neck cancer is the preservation of an organ and, at the same time, the function of such an organ. If I take you out of the area of head and neck itself, you have a similar situation, more emotional than physical, with cancer of the breast. The woman that loses a breast, it is a very severe and emotional and heart-breaking situation that is hard to carry. Even though there are means to reconstruct, it usually falls somewhat short of the ideal. Now, similar situations exist in all areas of the body. If a person has a cancer of the rectum, they would like, after the operation, to be able to function as normal and not to have a colostomy. So, in the head and neck area you have cancers that affect the mouth, especially the tongue nowadays, cancers that affect the throat, and cancers that affect the larynx. In this circumstance, at each one of these sites, two functions predominantly are going to be affected. One is the ability to speak, and one is the ability to eat. Now, yes, don’t forget breathing, but the breathing, to some extent—if you want to say—has to take place regardless of what treatment you use. Over the years, the organ that is more Dramatically influenced by our treatment—if you want to use that terminology, although it’s probably not correct—is the larynx—the voice box. For many, many, many years, there has always been a need to find better means to treat laryngeal cancer, preserving the larynx itself and its function. There is no use to preserve a larynx if it isn’t going to fulfill the functions of speech and deglutition and breathing. So, when you meet with a patient with a laryngeal cancer, the stage of the tumor will dictate what are the treatment modalities available to preserve the larynx. The more advanced the disease, the less is the availability of treatments that will allow us to preserve a functioning larynx, so if you have a patient with an early-stage cancer, it is very well established nowadays that either by radiation therapy or by surgery—and this is usually endoscopic surgery, nowadays, produced through an endoscope, and then with a laser beam you can resect the tumor or you can radiate the tumor with a high possibility of eliminating the cancer. If the tumor is more advanced, yes, there are surgical procedures nowadays predominantly going through the mouth with different scopes and different techniques—I mentioned yesterday the use of the robot for something like this—where you can basically, from the inside, core out this cancer and leave the essence of the larynx there, and if there are certain structures of the larynx that are preserved, the patient will function relatively well, though they may have a change in their voice. They may not be able to sing the way they used to before, and certain things they give up for preserving the larynx. It becomes really critical when a cancer is of such magnitude that, number one, it already interferes with breathing, so the patient may have to have an emergency tracheostomy—hole in the windpipe in order to breathe—and comes to you now with this relatively advanced cancer where the existing treatment modalities—be it surgery, be it radiation therapy with or without chemotherapy—fall short of what the patient’s desires are and what you wish could be accomplished. You are then faced with explaining to the patient that the only solution is to let us take out the voice box. Yes, we suture up the pharynx, which is the gullet, and you can swallow immediately. Yes, we leave the trachea windpipe out here, out on the skin, so you can breathe, but forget about immediate speech. Yes, speech can be rehabilitated, but it takes a significant effort, and the speech that comes out by any means has a certain mechanic, monotone pitch to it. You cannot change the pitch very well. Then there are other things that are sort of forgotten in this but to some degree are important to the patient because one of them is, for example, the sense of smell. How do we smell? Yes, we smell with the back of the nose basically, but we can do that only if we can bring air through. Now, if you’re not breathing through, you won’t be able to smell unless you do certain maneuvers with your throat that you bring air up and bring air in. But patients complain of the lack of smell. If you lose the voice box, yes, you do as much as possible to explain that the voice can be rehabilitated by some means, and these are better than they used to be, but still, to the patient, this is a very severe blow. It’s probably one of the most severe blows in this. To explain it to the patient, it does not usually sink in the first time, and even if there is a relative there—usually the next of kin or the significant other or a son or a daughter or somebody that will be present—the emotional impact of this is on all of them. You have to be cognizant of that because it takes quite a bit of convincing, and, yes, patients at that time, at that moment, very often become somewhat obstinate and often leave unhappy about what you have told them and may end up in the wrong hands because they go out shopping for treatment.

Tacey Ann Rosolowski, PhD:

So, in other words, they’re looking for somebody that will give them an alternative?

Helmuth Goepfert, MD:

Yeah, and that can happen. Now, other times the patients are totally negative to whatever you want to offer them because it does not fit their lifestyle.

Tacey Ann Rosolowski, PhD:

What do you mean?

Helmuth Goepfert, MD:

Okay. I’ll give you a typical example, and I’m going to leave the names out. It is an important issue. There was a very prominent member of society who happened to be a Count or something like that from Italy. He was married to a very wealthy Houstonian woman. He was a significant party man, drinker, smoker, in his late ‘50s or early ‘60s who developed a cancer of what’s called the pharyngeal wall, and, yes, the radical treatment for this would have been to do laryngopharyngectomy—take out the larynx—because you have to take out the voice box, otherwise it doesn’t function. But of course, he wanted to have none of this. He liked to control his environment and people that “served” him. So, for his initial appointment, which came through—and you know how things are here at the institution; all the way down from the president down, somebody comes to greet the patient—the appointment was given for 9 o’clock in the morning, and the patient didn’t show up until noon. So, I dealt with a patient that would not look me in the eye when I was talking, a wife that was a little bit of a princess, much younger than him—well, not much younger, but at least she was a little bit of a princess—that sort of tried to talk for him. He would not look me in the eye. He was sullen, he was sort of introverted in his thinking ability and totally negative. So, I said, “We need to get a few things done before we can decide what’s the best treatment for you.” There will be a few x-rays and tests and this and that that has to be done so that we can meet together tomorrow or the day after tomorrow in order to discuss what the treatment options are. But I knew already that this man was not going to show up. I knew already that for some reason we did not connect, and you immediately get that feeling as a physician that I’m not connecting with this patient. Now, for him to be late because he doesn’t get up before noontime, and for him not to participate at all in the discussion, was for me a significant hurdle, so I set out to take the bull by the horns. I may lose a patient, but I’m going to tell the wife when she comes what I think the problem is. The woman, of course, came. He didn’t come. I said, “We have a very difficult problem here, because your husband needs a treatment. We basically know what it will entail. We have decided that he probably would do okay with radiation therapy.” He had been seen by the radiation oncologist. Everybody had seen the patient. I said, “But he has not shown up here for the discussion. In my opinion—and I’m telling you this because of my experience—your husband, for the first time in his life, is facing a situation that he cannot buy himself out of.” That was a bomb. She flew off the chair, ran up to the tenth floor, complained bitterly to the president about what I had said. I stood by it. I said, “Somebody else can take care of the patient, but this has to be established.” Yes, somebody else took care of the patient. Eventually the patient died of the disease. I mean, there were all sorts of things that went wrong with this because of his heavy involvement with [Michael E.] DeBakey. DeBakey had sent the patient here, but DeBakey was going to be in the surgery. They finally consented to have one of my staff members do the surgery over at Methodist. The Chairman of Head and Neck Surgery at Methodist was the assistant in the operation, and DeBakey was hovering over both of them. I wouldn’t have tolerated that for a minute. I would say my personality would not have gone along with that, but that is the type of thing that you can find in these situations where patients do not want to abide by reality. Many variations thereof can occur, but I would say that is sort of the most classic one of somebody who totally rejected this. I then had to make a statement that was my own interpretation of things, and obviously it must have been that way because it caused a tremendous upheaval. So, as I say, those are the things that you can face when you deal with these patients. The fact of the matter is that life is a little complicated, and cancer complicates life even more in the sense of what functions are altered. For the human being, we have a voice that no other animal has on earth, and we have a sense of community that involves speech. We have, on the other side, a behavior that allows us to interact in one form or another, and it is always wise—that’s why we have the patient advocates here, because, yes, most of what they do is move patients around so they get all the parts where they need to go, but the patient advocacy is a good guide for the blind. Patients get hit with the reality of major magnitude. Like if it is likely that you’re going to lose your voice box, this poorly blocks anything else that you will tell them, so they need a way finder and a guide. That’s where the patient advocates are very good. In that sense, they are almost like navigators for these patients. So that’s the positive part of patient advocacy. Some of the other stuff, over the years, has become sort of murky. It is probably very different right now from what it used to be, but there is a need for these other people in the team that help the patient to go through decision making, when it comes to a very radical assault on their physical person.

Tacey Ann Rosolowski, PhD:

Let me ask you—I mean—the example you gave of this particular man was so extremely negative, and I can’t imagine—I mean—obviously the news would be just devastating, but what is a more positive, if no less difficult, process by which a person gets such news and then works through it in order to have some kind of rehabilitive outcome?

Helmuth Goepfert, MD:

You can sometimes find a good answer by just walking in and asking, “What do you want to know?” Particularly nowadays, where people have the access of second opinion by Google, they bring you a stack of material, and you have to have time in order to go through it. You have to identify what is the positive side of what they have read here, and what is their perception of what has been printed on the Xerox machine or however it comes? An approach to try to make it positive for them is to have them voice their impression of what is to happen, and through that process get them to easily find out, oh, this is how it has to happen. Rather than being a little bit paternalistic, walking in I say, “You need to have your voice box out.” That’s the way it was. We had Dr. Ballantyne, who I mentioned before; he would sometimes just walk in and say, “Listen, the only solution for you is you have to have the voice box out. I have time next Monday to do it.” (laughs) So that is sort of the extreme, which today is totally unacceptable. But that is sort of what goes in. I forgot to mention something else here. When you talk about bad news, it is often interesting to see how patients are going to react to that. I refer here specifically to a patient that was a very prominent banker in Dallas. The gentleman had been treated by the available treatment then for a cancer of his back part of the tongue, which is called the base of tongue. You have the oral tongue, which is the part you see in the mouth, and you have the one behind—the base of tongue. This cancer had recurred. That happens. So, the gentleman was sitting there in the chair. I explained to him, “Listen, the only solution there is for you is an operation where we need to take out the tongue, and because you won’t be able to swallow, we have to take out the voice box too.” Now this man was in his early ‘60s. I said, “You may not like that because your livelihood is communication, and you communicate as a banker. You communicate with people.” So, he said, “I think there’s another way out.” I said, “Okay. Do you need help with that?” “No,” he says, “I know what I’m going to do.” It was less than two months later that he had killed himself. That rarely happens, but it does happen. He basically shot himself. Now, you can say anything you want to about people committing suicide and being cowards and doing this and that, but that is the way that somebody solved his problem. When it became sort of difficult to swallow and he couldn’t communicate well and he had this big lump in the back of his throat, he took his gun and took his life. I knew that he was going to do it, and yes, somebody may have criticized me for not having advice that he was going to do it. I sort of read in him that he didn’t want to have any help with this. He was not a depressed patient, and the alternative for it was not really good. The alternative for him to live out his life and die of his cancer, that was miserable. I did not have any problem with that, but I can see many people that would have raised a flag and said, “This patient is going to commit suicide. Do something about it. Send him to a psychiatrist.” In my opinion, there is a time when you have to sort of go by the principles of self-determination. So, now, you want to talk about these two men there?

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Chapter 11: Patient Reactions to News of Speech Loss

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