Patient Experience in Neoplastic Disease in Light of the Statements of Doctors Who Are Oncological Patients

Abstract

This study aimed to explore oncological doctor-patients experiences concerning the neoplastic disease. The study involved 20 Polish doctors with cancer. Respondents answered open questions related to cancer management and opinions about themselves as oncological patients. The results of the study indicate that doctor-patients deny their susceptibility to illness, which leads to prophylaxis ignorance. Many doctors diagnosed themselves with the disease, but they needed a clear verbal confirmation of the diagnosis by another physician. Respondents well assessed professional skills of doctor-colleagues. However, communication competencies of their doctors were assessed critically. Medical narratives may become an incentive to deepen the discourse on the quality of the relationship between a doctor and a doctor-oncological patient. They may also lead to further research on the anthropological, psychological, and sociological understanding of disease.

Introduction

“In every profession there are essential situations that reveal its nature. In medicine, it is a meeting of two people. A patient with a doctor.” ¹ Many studies report on the importance of doctor–patient relationships and their impact on the therapeutic process, but most of them focus on communication with nondoctor patients.^1‐3 The doctor–patient relationship occurring between two doctors is a topic rarely explored by physicians, psychologists, and medical sociologists, especially regarding neoplastic disease. Cancer, although increasingly considered a chronic illness, is a life-threatening disease. Patients often experience extreme stress regarding the effectiveness of therapy, prognosis, relationships with doctors, and changes in their social, family, and professional lives. Frank notes: “a serious illness is the loss of the destination and the map that previously designated and led the life of an ill person.” ⁴ Cancer is an extremely complex phenomenon, not only medically, but also existentially, socially, and emotionally.^5,6

Having medical knowledge and practicing it professionally on a daily basis might not be strong enough stimuli to undertake an early self-diagnosis, periodic preventive examinations, or ease the mental adaptation to the role of patient. Perhaps being confronted with a disease that society considers fatal makes their medical knowledge give way to the pluralistic^7‐10 dimension of various nonmedical systems of knowledge and practices. According to Kleinman's theory, ⁵ ill doctors react according to their experiences with patients and subjectively apply elements of the definitions of “neoplastic disease” and “oncological patient” to their own actions while adapting to the disease and communicating with colleagues–doctors, family, and patients. Perhaps only their own experiences as patients shed new light on the meaning and quality of doctor–patient communication; treating one's body as an object, creating an image to meet the requirements of a second gaze (…) and feeling oneself, but not in terms of the body—the subject, but in the second aspect, that is, understanding the body as an object, treating it as an image exposed to the gaze of another human being. ⁴

As noted by Professor Szczeklik, in order to achieve good results from therapy and good communication with the patient, “the doctor must speak the same language as the patient.”^11,12 Communication between a doctor and a patient-doctor may seem ideal. However, considering Awdish's experience ¹³ and the conclusions from *blinded* research, it seems reasonable to hear the narratives of doctors who are also cancer patients concerning their struggles with the disease and the quality of the communication with colleague-doctors during therapy.

Knowing the kind of cancer patient doctors are and whether there are significant differences in the way doctors come to accept their illness compared to nondoctor cancer patients is an important addition to the current knowledge on the social and cultural aspects surrounding cancer and doctor–patient communication. The diagnosis and treatment of oncological patients who are also doctors and, above all, the quality of communication between members of the same profession, have not been intensively explored. Therefore, the aim of the article is to present the results of qualitative research (in-depth interviews and narrative analysis) conducted on a group of doctors–cancer patients. This study is an extension of the pilot study conducted by *blinded* in 2016–2018. ¹⁰

Method

In-depth interviews were conducted in December 2019 and January 2020 using a snowball sampling technique. The respondents were 20 doctors (8 men and 12 women) with cancer living in the Masovian and Greater Poland voivodeships. Each interview lasted about 30 min and was recorded and transcribed. The interviews consisted of an open-question questionnaire that was similar to the one used in the previous pilot studies. It was divided into 4 parts assessing the following points: whether the participants sought cancer prophylaxis before the onset of the disease; the manner in which their doctor communicated their cancer diagnosis; their doctors’ professional and communication skills; and their opinions about themselves as oncological patients. The characteristics of the respondents are presented in Table 1.

Table 1.

Characteristics of Doctors Participating in the Study.

No.	Name	Age	Type of cancer	Specialty
1.	Jadwiga	63	Ovarian	Surgeon
2.	Ewa	44	Gastric	Ophthalmologist
3.	Danuta	64	Breast	Laryngologist
4.	Agnieszka	47	Breast	Ophthalmologist
5.	Grażyna	55	Breast	Pediatrician
6.	Joanna	47	Skin	Family medicine
7.	Agnieszka	36	Brain (glioma)	Occupational medicine
8.	Wanda	50	Brain (glioma)	Allergist
9.	Teresa	66	Thyroid	Gynecologist
10.	Urszula	43	Ovarian	Hematologist
11.	Danuta	61	Sarcoma	Cardiologist
12.	Małgorzata	43	Gastric	pediatrician
13.	Krzysztof	46	Colorectal	Family medicine
14.	Piotr	53	Esophageal	Internist
15.	Michał	53	Prostate	Anesthesiologist
16.	Leszek	65	Prostate	Allergist
17.	Paweł	56	Prostate	Internist
18.	Krzysztof	49	Colorectal	Gynecologist
19.	Robert	49	Skin	Family medicine
20.	Wiesław	60	Colorectal	Dermatologist

Results

Based on analysis of extensive patient–doctor accounts, we distinguished 4 categories of behavior and obstacles that patients face.

Lack of Prophylaxis and Astonishment of the Disease

Like in our pilot studies, the respondents’ statements indicated that neither their daily work experience nor their medical knowledge led them to take responsible medical action when they experienced symptoms:

Sure, I tell my patients to get tested, but I ignore this advice myself. (Danuta, age 61, sarcoma)

I knew that something was going on, but of course I did not get tested … sure, I was afraid that it was cancer … I’m an intelligent man, but when it comes to your own health—we get stupid. (Leszek, age 65, prostate cancer)

These statements emphasize the conviction that doctors’ negligence in seeking preventive examinations is a common and even acceptable phenomenon. Although all respondents expressed regret, remorse, and feelings of irresponsibility for ignoring prophylaxis or not seeking an early diagnosis, they also expressed that not performing preventive examinations is a permanent characteristic of the culture and professional customs of doctors. These responses agree with the results of our pilot study.

Many respondents indicated that, regardless of whether they had diagnosed themselves with the disease based on their test results or only suspected the disease, they needed a clear verbal confirmation of the diagnosis by another physician. These results are also in line with those of our pilot studies.

The Need to Improve Communication Skills of Colleagues/Fellow Doctors

Many of the respondents reported words of sympathy and understanding for the doctor confirming their diagnosis. However, in their view, the quality of their doctor's communication skills depended on the doctor's ability to sense the psychological needs of the patient. The respondents assessed the lack of this skill or an inadequate use of it during the medical consultation negatively, which also constituted a critical reflection on the psychological competencies of their doctor:

Everyone—whether it's a colleague or not—who makes such a diagnosis must understand the patient's situation… (Teresa, age 66, thyroid cancer)

The respondents’ perceptible need to find a rational explanation for this lack of psychological knowledge often resulted in criticism of medical universities for failing to train doctors for this type of interpersonal situation:

I understood now, as a patient, that someone should work with doctors who have to communicate this diagnosis to patients… (Leszek, age 65, prostate cancer)

However, the descriptions of the emotions of fear, anxiety, and uncertainty, experienced after hearing the diagnosis, indicated that the emotional aspect of the doctor–patient relationship and the need to have their negative emotions assuaged by their doctor were equally strong (if not stronger) than the need for instructions and tips on how to proceed in the treatment process:

It was pure madness … but also a great burden, and life with such a diagnosis … it's life like in a horror … (Teresa, age 66, thyroid cancer)

Sure you guess you have cancer, but that doesn't mean you want to hear what you're predicting … you want to be told that there is an error in lab tests. (Piotr, age 53, esophageal cancer)

So what if we know more than the average patient, the non-doctor. We are also counting on an error in lab tests. We don't want to be our own doctors… (Agnieszka, age 36, glioma)

Problem With Finding an Adequate Doctor

The respondents’ statements show that when faced with such a difficult disease as cancer, they decided not to use their medical knowledge to undertake self-treatment. In their narratives, however, they emphasize the difficulty in finding an attending physician, which was confirmed in previous pilot studies:

The doctor as a patient equals stress … then you always think that if you make a mistake or don't know something, it will be embarrassing …. (Teresa, age 66, thyroid cancer)

I am a doctor-patient and so what? This is a much worse situation, because colleagues believe that if you are in the profession, you will get there and ask … you will treat yourself … (Piotr, age 53, esophageal cancer)

Discussion

Among the many reasons for ignoring an early diagnosis, fear was often noted as the real obstacle, particularly fear of the life changes the disease might cause. Studies show that nondoctor patients quickly look to medical publications for support after receiving a diagnosis (eg, statistics, prognoses, and survival data). ¹⁴ However, having easier access to this type of medical data and awareness of its importance in the early diagnosis of the disease were not enough to convince the respondents to take early action. Knowledge of the accidental and unpredictable nature of the disease was the reason to postpone confirmation of the diagnosis.

Doctors are expected to be healthy to care for sick patients, this ironic conception leads to high rates of mental illness and suicide.^15,16 There is an observable tendency of physicians to neglect their own health and deny their susceptibility to illness.^17,18 Doctors are also aware of how illness and its treatment impact their work, especially patients, even before the illness is diagnosed. Medical knowledge enables doctors to justify their symptoms as insignificant and rationalize symptoms as minor conditions which leads to neglect.^19,20 According to Klitzman, several physicians suggested that medical students should be admitted to inpatient rooms to experience the disruptions, inconveniences, and powerlessness that patients confront. ²¹ The problem of poor communication in cancer care is common and requires effective solutions. Managing the communication of a problematic subset of clinicians will likely require strategic interventions at the organizational level of models of care.^22,23 It may be surprising that only a few respondents reported having the opportunity for a deeper conversation with their doctor about their medical case immediately after receiving their diagnosis. The main reason for the lack of such opportunities was the conviction (resulting from professional experience) that the diagnostician did not have enough time. For this reason, the conversation with the doctor–patient took place in the hospital corridor. As Eichelberger and Stanisławska ²⁴ note, the common problem in the practice of conducting this type of talk with patients seems to be the problem of removing emotions outside the doctor's office, and thus leaving the patient uninformed and emotionally broken. Medicine does not like elusiveness and subjectivity, so doctors in conversation with patients often direct them to what is measurable and objective (statistics, treatment regimens, etc). This is confirmed by the statements of the doctors participating in this study, who are also cancer patients. The support that the doctors provided the respondents was in the form of information: the best treatment methods, the best medical centers specializing in their disease, recommendations on different specialists, and encouragement to read the latest research results. This type of informative support was a kind of substitute for the emotional support expected by the doctor-patient colleague. The respondents reported that, in the conversation with the doctor, they wanted to receive as much information as possible about their disease. They also wanted to get as many “hard” and “objective” medical facts as possible in relation to the planned therapy.

The importance of the quality of the doctor–patient relationship is still marginalized when teaching the art of medicine to medical students and in modeling the treatment of patients with serious diseases. The story of Doctor Awdish illustrates this. In her autobiography published in 2017, ¹³ entitled “In Shock. My Journey from Death to Recovery and the Redemptive Power of Hope” she describes her observations as a patient. Awdish was 33 years old when she became pregnant, and in the seventh month, she developed complications: HELLP syndrome. It was only her own experiences as a patient that made her reflect that future doctors are taught to question their own corporality and to treat both their body and the patient's body in an instrumental way. ¹³ The respondents’ conviction that they found themselves in an easier therapeutic situation than if they were nonphysician patients (knowledge of medical language and medical procedures, easier access to doctors, research, the latest scientific research in a given field, etc) could be easily seen. Nonphysician patients in addition to a cancer diagnosis, are often surrounded by the uncertainties, insecurities, and myths which generate additional morbidity and tension. ²⁵

The respondents seemed to be aware of the risks of self-treatment, such as loss of objectivity, poorer standards of diagnosis and therapy (treatment at home), and lack of structured medical documentation. They also understood their colleagues’ fear of being judged on their knowledge and professionalism by doctor-patients and of possible negative opinions on their effectiveness being passed on to other doctors. But, above all, the respondents felt the need to be under the care of someone with more knowledge and experience in treating cancer patients than themselves. The need for emotional attachment and trust in the person leading the doctor-patient through the therapeutic process was emphasized in every conversation. Difficulty in finding a caregiver and criticism of the communicative competence of Polish doctors seem to be the key issues characterizing the situation of a doctor as a patient, which is generally unrealistically thought of as better than that of nondoctor cancer patients. Considering the practice of self-treatment by Polish doctors, ²⁶ it can be concluded that this (and not the need to find an attending physician) is the main reason behind the problems faced by doctor-patients in finding a medical caregiver whose guidelines and recommendations are trusted and strictly followed.

Therefore, medical knowledge and the patient's belonging to the same medical professional group seem to be a significant barrier in creating a proper, or even paternalistic, relationship between doctors who play two different roles. The lack of a trust-based relationship between the patient and the doctor may affect not only the course and quality of the therapeutic process, but also the later more difficult restitution, ie, rebuilding life after diagnosis, especially in the professional environment.^26,27

Janczukowicz ²⁶ notes, “General Medical Council (GMC, Great Britain)—if possible, avoid giving medical help to anyone with whom you have close personal relationships,” that is family and friends. In the United Kingdom, Canada, the United States, Ireland, and New Zealand there is a clear and unambiguous interpretation of the legal regulations regarding the reasons why treatment of relatives should not be undertaken (except for the need to provide first aid in case of emergency or lack of access to other qualified healthcare professionals). But, as emphasized, the Polish doctors’ approach to treating family, relatives, and themselves differs radically in practice. Polish doctors treat their relatives and undertake self-treatment. ²⁷

The need to assuage anxiety and maintain hope, to build a proper relationship with an attending physician guiding the entire treatment process, and the need to put common knowledge over scientific knowledge—however, trivial it may sound—indicates that, when confronted with cancer, a doctor-patient has the same strong emotional needs as the patient who is not a doctor. ²⁷

Conclusion

Based on our interviews with doctors who are cancer patients, we can draw the following conclusions, which are consistent with those of the pilot studies from 2017:

• - There is an observable tendency of physicians to neglect their own health and deny their susceptibility to illness.

• - The doctor-patient needs psychological support to cope with the disease.

• - Among doctors who are cancer patients, there is a belief that doctors do not want to treat doctors.

• - Patients who are doctors have problems finding a single attending physician, which results in feelings of loneliness during treatment.

• - The medical knowledge possessed by the doctor-patient makes the treatment process and communication with other doctors difficult.

• - Although the professional competencies of doctor-colleagues were well assessed, the manner in which they conveyed information about the disease to patients was negatively assessed.

Considering the conclusions from the pilot studies and those discussed above, it seems justified to extend this research to a wider group of respondents to be able to make more general conclusions. The topic of doctors as oncological patients is rarely discussed in the literature on doctor–patient communication. Therefore, these medical narratives may become an incentive to deepen the discourse on the quality of the relationship between a doctor and a doctor-oncological patient. They may also lead to further research on the anthropological, psychological, and sociological understanding of the experience of cancer and its impact on the construction of broader social perceptions of it.