Editor’s Note: At first blush, you may wonder why a physician’s account of his illness and the frustrations he experienced merit a publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task!
–CWS

Abstract

Summary: This manuscript presents my personal experiences as a physician undergoing several surgical procedures including radical neck surgery for removal of hypopharyngeal squamous cell carcinoma. I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.
Keywords: Cancer, radiation, surgery, medical errors, participatory medicine.
Citation: Brook I. A physician’s experience as a cancer of the neck patient: the importance of patient participation. J Participat Med. 2011 Apr 18; 3:e20.
Published: April 18, 2011.
Competing Interests: The author has declared that no competing interests exist.

Introduction

This article presents my personal experiences in undergoing several surgical procedures, including radical neck surgery, for removal of pyriform sinus squamous cell carcinoma. Although I am an experienced infectious diseases physician, it was an entirely new and challenging experience to face cancer as a patient rather than as a physician. I am telling my personal story to illustrate how active participation in one’s medical and surgical care is essential, and can prevent medical errors and facilitate recovery.[1]

Facing the Diagnosis of Cancer

Five years ago, a bothersome sore throat led to a diagnosis of hypopharyngeal cancer. I could scarcely believe that I actually had cancer. I insisted on seeing the pathological specimens myself and personally discussing them with the pathologist to make sure that the diagnosis was accurate. Since my cancer was very small and was completely removed by the diagnostic biopsy, the only treatment required was radiation to my neck area. At that time my physicians anticipated that I could be completely cured and the recommended radiation treatment would have no lasting adverse effects.

In facing the diagnosis I encountered two types of physicians: The optimists who saw the “cup half full” and the pessimists who saw it “half empty.” But both of these approaches deprived me of being truthfully and fully informed about my prognosis, which is essential for making logical choices concerning treatment. I preferred those who told me the truth about risks and my prognosis, even if it was not rosy. I always voiced my preference to the physicians so that they would be aware of my wishes and so we could, hopefully, develop a trusting relationship.

Getting Irradiated

I was eager to get through treatment, even though the radiation treatments were difficult to bear. When a computer problem forced the cancellation of therapy for five consecutive days, I was very upset. I insisted that they either get the problem fixed or send me to be treated at a different facility. I wanted to leave no stone unturned in my efforts to achieve a cure. After threatening to complain to the hospital director, I had my treatment continued after-hours at another local hospital until the problem with the computer was resolved. I believe that I was the only patient that had ever been treated in that fashion. The most likely reason is that, unlike me, most other patients probably did not push to be sent elsewhere, as I had. I wish my radiation oncologists had shown more initiative themselves to resolve the problem. This lack of initiative left me feeling that they were indifferent to my plight.

During the first two to three weeks of my treatment, I suffered from tiredness, headaches, and clouded perception. I realized after a while that my treating physicians were becoming impatient and were sometimes irritated when I came to them for advice and support. One of them told me that I should not feel so tired so early in the course of treatment. He also told me that I should wait for my weekly examination to voice my questions and concerns. I was surprised and upset by his seemingly callous attitude. I could not explain why I experienced symptoms so early, but I knew that people differ in their reaction and timing of side effects.

I needed the doctors to be there for me but, instead, they left me feeling like I was pestering them with trivial issues and complaints. Everything was so new to me. I was concerned and worried about my symptoms and looked to them for advice on how to cope. I also needed reassurance that these were expected symptoms and that they would go away afterwards. Fortunately, I found receptive ears and helpful advice from the clinic nurse.

The lengthy recovery period was accompanied by the emergence of a series of newer side effects, including hypothyroidism and neck stiffness, which often become lifelong concerns. I was forewarned by the radiation oncologist to expect some of them, but I was unprepared and surprised by others they never told me about. My physicians avoided responding to my question, “What else can happen to me?” I wish they had been more open and honest with me about all the potential repercussions of treatment. If they had provided me with more information, I would have been less concerned and apprehensive when these side effects actually emerged.

Am I Cured?

Following the removal of the cancer and the radiation treatment, I was scheduled to return to the otolaryngology clinic every month for the first year and every two months for the second year. I elected to continue to return monthly in the second year because I felt that would help to ensure early detection of potential recurrent cancer. That turned out to be fortunate, because a recurrence was discovered by an astute resident 20 months after diagnosis of the cancer.

Choosing the Best Surgical Treatment

In my quest to be treated expeditiously for this recurrence, I elected to be treated by local surgeons whom I knew and trusted. My surgeons initially wanted to perform a laryngectomy. However, they also considered removing the cancer by laser. Hearing about these options in detail was overwhelming and hard for me to completely appreciate and integrate. My wife and I had numerous questions answered but could not think of many others that we needed to ask. At this time, I just wanted to be cured of the cancer, so much that I was ready to pay any price in discomfort, pain, or loss of function. Even though the adverse effects of surgery were explained on several occasions, it didn’t prepare me adequately for the reality of the actual experience.

I was uncertain as to how competent and experienced the members of my surgical team were, and wondered if I should seek treatment elsewhere, perhaps in a more prestigious institution or with more experienced surgeons. However, at that time, I was really too overwhelmed to seriously consider these alternatives. And, since it seemed that I had caring, competent physicians taking care of me, I opted to just trust them and to proceed. Since the operation was not really unusual and had been done numerous times at that hospital, I felt that they likely possessed sufficient experience and skills to provide me with optimal care. However, what I failed to ask (or even consider) was whether my surgical team was experienced in removing the specific type of cancer I had using the laser equipment. The day before my surgery, I asked my surgeon how many patients with “my type of cancer” he had treated. He informed me that even though he had only operated on a single a patient, he felt confident that he could remove my cancer.

I wished my surgeon had been more open and forthcoming about his lack of expertise in using laser surgery in removing my type of cancer, so that I could have made an educated decision about whether to have him do the procedure. But I was too anxious and did not have the emotional strength to start looking around the country for alternatives. It was also appealing for me to have a timely date set for surgery, since looking for another location would cause further delay.

The decision regarding the type of surgery to undergo had a lot to do with what my postsurgical quality of life would be like. If laser surgery was chosen, I would have minimal long-term effects. But, if an extensive resection was needed, I would risk having to deal with swallowing difficulties or potential food aspiration. If my vocal cords were to be removed, I would also need to use alternative means of communication. In my quest to make an educated decision I consulted several colleagues about the pros and cons of each approach. I concluded that my surgeon’s approach was reasonable and that I should proceed with the laser approach.

My surgeon’s lack of experience in using the laser technique became evident on the day of surgery as I was lying on the operating table. I discovered that the laser instrument was brand new and had never been used by my surgeon. A technician from the manufacturer of the laser was actually present in the operating room to train my surgeon on how to use the device. The surgeon’s inexperience was further evident when he mistakenly removed scar tissue instead of the cancerous lesion. It took a week before the error was discovered by pathological studies. This error could have been avoided if frozen sections of the lesion had been properly analyzed. I had to undergo three additional laser procedures, all of which failed to remove the cancer in its entirety.

At that point, I became exhausted emotionally and physically and frustrated with my prolonged saga. I began to lose confidence in my surgeons, who now wanted to perform either a partial or total laryngectomy. I elected to have any subsequent surgery at a different medical center by someone with greater experience treating this type of cancer. This time, the tumor was completely removed, but I had undergone a radical surgical procedure.

My experience underscores the need for surgeons to be frank and honest with their patients about their familiarity with the operation they plan to perform and not to hesitate to refer them to a medical center with greater experience, if appropriate. It also emphasizes the need for patients to inquire about the surgeon’s relative experience performing the specific procedure they are about to undergo. Seeking a second opinion should be offered as an option to patients prior to surgery, especially if the procedure is rarely performed.

Hospitalization After Surgeries

As a physician, it was easier for me to access medical care and have an ongoing dialogue with my colleagues. I may have also been more understanding of their shortcomings. However, some might have assumed that I understood and knew more about my medical condition than I actually did. I needed to remind them about this on several occasions. I not only wanted to be informed about my treatment, but needed detailed explanations about my condition and the proposed methods of treatment. I also wanted to feel the freedom to express my opinions and offer input whenever I felt that I had something to offer. On a few occasions, I was able to provide useful input about my symptoms that helped them to address issues early on. However, once I lost my ability to speak and had to depend on writing to communicate, this became difficult. Some surgeons were impatient, rushing me and always in a hurry to finish rounds. I received the attention of the senior surgeons for only a few minutes each day. They rarely examined any part of my body except the surgical sites and listened to my lungs and heart only when I asked them to. The nurses were also inconsistent about examinations.

I learned to prepare a written list of questions prior to rounds, but there was rarely a chance to write down a followup question or request a clarification. This was very frustrating as I anxiously waited to see the surgeons and felt ignored and frustrated at being left with many unanswered questions.

Some of the surgeons and many of the residents were very caring, attentive, and compassionate. However, there were demoralizing instances of physicians with a rushed and impatient attitude. I also encountered a few abrasive and downright rude physicians. On one occasion, I asked a senior resident to clean my obstructed tracheotomy tube. He reluctantly flushed it using tap water rather than the sterile cleaning kit that was routinely used for this purpose. The tube he wanted to place back into my trachea was still dirty, and when I asked him to use the kit and brush the mucus out, he abrasively responded, “We call the shots here,” and left my room. I felt humiliated, helpless, and angry at being treated in this fashion.

Despite these experiences, I am grateful to the nurses and physicians who cared for me. However, it is imperative that surgeons realize that their attitude is a very important element of their patients’ post-surgical care and emotional wellbeing. Patience, compassion, and thoroughness are critically important elements of care.

Medical Errors

Although the medical care I received was, on balance, good, mistakes were being made at all care levels. Fortunately, I was able to abort many, but not all. Even though I have practiced medicine for over 40 years in a hospital setting, I have never had a chance to observe and suffer the consequences of such errors as a patient. I had great difficulty correcting many of these errors after my laryngectomy because I was unable to speak. However, I realized that I had to be my own advocate in order to prevent errors and make sure they were not repeated.

One day after my surgery, while I was still in the surgical intensive care unit, I experienced an obstruction of my airway and reached for the call button. It was not to be found as it had fallen to the floor. I tried to call the staff, and even though I was only a few feet away from the nursing station, I was ignored until my wife arrived 10 minutes later. I was helpless in asking for assistance without a voice and was desperately in need of air, while medical personnel passed by.

Other errors included the following: Not washing hands or using gloves when indicated; taking oral temperature without placing the thermometer in a plastic sheath; using an inappropriately sized blood pressure cuff (thus getting alarming readings); attempting to administer medications by mouth instead of by nasogastric tube; delivering an incorrect medication dose; connecting a suction machine directly to the suction port without a bottle of water; and forgetting to rinse the hydrogen peroxide used for cleaning the tracheal tube (thus causing severe irritation), forgetting to connect the call button, or failing to write down verbal orders

The most serious error was prematurely feeding me by mouth a week too early. This continued for 16 hours. Only my persistent questioning brought this to the attention of a senior surgeon. This occurred because of miscommunication of verbal orders. All of these events made me wonder what happens to non-medically educated patients, who may not have the knowledge to recognize and prevent an error. Fortunately, I did not suffer any long term consequences but I felt that I had to be constantly on guard and stay vigilant.

All of these events made me realize that a hospital is not a safe place for patients. Most patients lack medical education and thus may not recognize, let alone feel that they are able to prevent errors in their care. My experiences taught me that a dedicated patient advocate such as a family member or a friend is desirable for all hospitalized patients.

There is a great need for better medical training, greater vigilance, and increased supervision and communication between health care providers and their patients. It is my hope that this will occur and will undoubtedly contribute to the reduction of errors in patient care and, thus, lead to a safer environment.

Fear of Recurrence

Despite the fact that my surgeons assured me that my chances for recurrence and spread after the laryngectomy were remote, my anxiety and fear was not gone. For a while I was afraid to make long-term plans. I am still apprehensive whenever I get my followup PET and MRI scans, and anxiously wait for the results. I sense great relief when I learn that these scans are negative and feel that I’ve been granted a temporary lease on life until the next tests are done. My life has become a series of intervals of relative calm until the next set of scans.

Whenever I experience new symptoms, I fear the worst and wonder if these are the result of the cancer’s local or systemic spread. The fear is only relieved after I undergo thorough medical evaluation. My physicians have been very understanding of my anxiety and have examined me promptly whenever new symptoms emerge. Their responsiveness to my needs has made it easier for me because I know that they will be there for me should a problem arise.

What helps me cope with my worries is to wait a few days before I seek medical help unless it is an urgent problem. Happily, the majority of my symptoms seem to subside within this time. I also have learned not to panic, but to use my past experiences to understand new symptoms and wait patiently for my next medical appointment. Although I will never be completely free of the fear of cancer’s return, I am hopeful that living with the uncertainty will get easier over time. I hope to adjust to the uncertainty of my future and find a balance between fear and acceptance.

Conclusions

My hope is that relating my experiences as a physician who experienced medical care from the other side of the stethoscope will help other patients, their family members, and caregivers recognize the importance of active involvement in their own care. Active involvement can help prevent medical errors and facilitate recovery.

Reference

  1. Brook I. Neck cancer: a physician’s personal experience. Arch Otolaryngol Head Neck Surg. 2009;135:118.

Copyright: © 2011 Itzhak Brook. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

Editor’s Recommendation

For a list of other doctors who distinguished themselves as e-patients, see “Let’s hear it for the d-patient e-patients” on e-Patients.net.

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