Overcoming death ideation

Take-home message

Practicing medicine is an artistic gift

(Fictional narrative by the doctor)

James Fleck, MD, PhD: Anticancerweb 25 (05), 2021

In the past, the diagnosis of cancer has been associated with the ideation of death. Forty years ago, when I started my medical training, oncology was just beginning as a clinical specialty. Public education and screening resources for early cancer diagnosis were poor and cancer was often detected in advanced stages and generally as a terminal illness. Curative treatment was focused on loco-regional control. If the tumor were restricted to the organ and could be completely removed after radical surgery, providing a wide resection margin, there would be a chance of cure. When the tumor was no longer resectable, treatment was only palliative, with less sophisticated radiotherapy technique and ineffective and toxic chemotherapy. Anesthetics had a lower degree of safety and postoperative care did not include current technological refinement.

The association of cancer with death could disrupt doctor-patient relationship.

At that time, the emotional care of cancer patient had a psychological approach similar to that used in preparing for the end of life. The identification with death was so strong that the five phases of grief, described in the book “On Death and Dying” by the Swiss author Elisabeth Kübler-Ross, used to be a reference in the assistance of cancer patients. These phases used to translate the emotional reaction of terminally ill patients when they become aware of death. Terminally patients would go through stages, basically including five defense mechanisms such as denial, aggression, bargaining, depression and acceptance. Despite Dr. Kübler-Ross' original work being focused on assisting terminally ill patients, her concepts have been progressively extended to other types of loss situations, including cancer diagnosis. The difficulty was in understanding the meaning and extent of the loss. Even today, it is necessary to dissociate the diagnosis of cancer from an unappealable death penalty. In cancer the loss is physical, emotional and social, but the disease can be often be treated and cured. Patient would go through the same five stages of grief described in Dr. Kübler-Ross' work, but the focus of the confrontation would not be a preparation for dying, but an active search to rescue life.

The figure below describes the five stages of loss.

Technological advances in medicine have improved the accuracy of cancer diagnosis and the therapeutic index of interventions. Consequently, cancer started to be identified earlier and treatments became more effective. An example was mammography, a recognized screening method for breast cancer, whose use in women over forty has contributed to a 39% reduction in the risk of death from breast cancer. Likewise, prevention methods have improved in other types of high-incidence tumors, such as colorectal and lung cancer. There was a reduction in surgical mortality due to the emergence of safer anesthetics and improvements in postoperative care. New radiotherapy techniques emerged through new software design that allowed for greater precision in the radiation fields, reducing the undesirable irradiation to normal tissues always presented in the vicinity of the tumor. More efficient and less toxic drugs have been developed. The universe of adjuvant and neoadjuvant treatments was created in which both chemotherapy and radiotherapy were early-associated with surgical treatment, providing less-mutilating interventions and expanding the curative possibilities. New concepts of therapeutic intervention were introduced, such as immunological checkpoint blockade and intelligent drugs acting in well-defined biological targets. There was a better understanding of the tumor phenotypic expression supported by the Cancer Genome Atlas, which has allowed a progressive use of more personalized treatments. Today, in highly qualified centers, it is possible to estimate an overall cure rate for cancer in the range of 60 to 65%.

Fortunately, sequential and consistent advances have led to a change in the way cancer patients  deal with the disease. The improvement in the prognosis allowed a more objective and direct dialogue. Patient would continue to face the loss, caused by the diagnosis of an illness that would, at least temporarily, change his lifestyle. He would still go through the five stages of loss, but the main focus and professional guidance would be directed to life. A behavior change was initiated, but it had been implemented in slow motion. I remember several interdisciplinary scientific meetings held with the sole objective of evaluating the best way to communicate cancer diagnosis to the patient. In my experience, all patients used to anticipate their diagnosis. The clinical presentation of the disease, the laboratory tests requested and the need for multiple professionals, would indicate that something more serious is happening. I have always taken a direct approach with the patient, since the first consultation. However, there were professionals who, protecting themselves against patient’s momentarily denial phase, did not communicate the diagnosis, immediately. They used to have a secret meeting with the family, describing the diagnostic and prognostic data in detail. Inadvertently, they excluded the patient from the decision-making process, creating a tragic theatrical situation. It is not possible to have patient's compliance, if the doctor is hiding the truth. Likewise, the family cannot replace the doctor in this role, since the relatives does not have technical conditions or emotional exemption to understanding and answering patient complains. Both the patient and relatives end up being unassisted. I have always been aware that the emotional management of a cancer patient is an art to be exercised by deep mental involvement. The physician should always be exposed to direct contact with the patient. In medical practice, the doctor should never demonstrate technical or emotional insecurity. When the physician expresses a self-defensive behavior, it is a clear indication of a wrong approaching in the patient-physician relationship. The first skill required is to listen to the patient's complaint uncensored. The time spent in getting the patient's history should be perceived by the doctor, at the pace dictated by patient's emotional condition. It has always been an exercise in sensitivity. The doctor should provide the right information at the right time and cannot transfer this responsibility. Some patients sequentially went through all five stages of loss, others expressed them at random. It would be up to the doctor to identify what stage the patient is in and proceed with the information, respecting the defense mechanism that is being used. The patient can go through an emotional migratory movement and the doctor must exercise his adaptability to each new situation.

In the denial phase, the doctor must maintain a strict monitoring, preventing the patient from being left unattended. In the treatment of cancer, the denial generally did not last long, as the strong evidence produced by the diagnostic tests prevents the patient from remaining indifferent to the results. Usually, denial phase is not associated to an inquiring patient behavior. The demand is mainly for emotional support. The doctor must be attentive, meeting all the patient's needs, even when they sound superficial and peripheral. The essential medical skill for coping with the denial phase is professional availability.

The anger phase is usually associated with guilt. Patient's failure to identify the object of guilt can cause the aggression to be misdirected, often falling on family members and even on the doctor. Doctor must show neutrality and proficiency, which will increase the patient's confidence. Doctor must explain that illnesses are frequent events in people's lives, which must be faced with emotional balance and objectivity. Physician's empathetic attitude helps to absorb the patient's aggressive behavior. In the anger phase, the patient has already realized his diagnosis, but is trying to disguise it with an immature attitude of hatred.

In the bargaining phase, the patient had already realized his illness. However, it tends to minimize the problem, seeking quick solutions. He may risk submitting to magical proposals, buying miraculous treatments or believing in charlatans. However, it is also the time when more specific questions begin, which give the doctor the opportunity to discuss the diagnosis and treatment options. Usually, the doctor is charged for consistency in the technical information provided, as the patient continues to resist the intervention and repeats the same questions. My impression is that the recommendation and its technical support need to be repeated several times and always in the same format. It is like a process of cognitive conditioning, in which the acceptance of knowledge is associated with the reaffirmation of the facts. At the bargaining phase the result is related to a professional exercise of patience, consistency and availability.

In the depression phase, the disease was already made aware, but in a still traumatic way revealed by sadness, hopelessness, fear and emotional detachment. It is a phase that demand a lot of professional skills, because in addition to continuous emotional support, the doctor should define the need for antidepressant drugs or eventually psychiatric consultation. In my experience, the need for psychiatry consult or psychotropic drugs are restricted to patients with a history of emotional illness. Previously healthy patients should be treated only with basic care and guidance. After a while, that depression phase will be over.

The acceptance phase consists of an active search for a better understanding of the disease, aiming at the development of patient's skills to face it. The doctor-patient relationship supported on mutual trust has evolved into a rational dialogue. There is a clear communication, whose level of information is essentially dictated by the patient's need. Some patients are satisfied with brief information about the diagnosis and general guidance on the type and duration of treatment. Others, with a more inquisitive temper, seek greater detail, questioning the rational, evidences, outcome and toxicity.

It is also necessary to look at the family. It cannot be neglected, as it represents the main emotional support for the patient. The diagnosis of cancer causes a feeling of helplessness in family members. Cancer has been a disease marked by its aggressiveness and unpredictable behavior. The doctor must deal with some preconceived ideas and guide the patient and his family with objectivity and individuality. Breaking with the patient's imaginary ideas represents the first step on the path of physical and emotional control. It is not easy to deal with the imaginary. Dealing with adversity has never been guided by a simple formula. Patient's behavior cannot be predicted. There is no university that prepares people for the vicissitudes of everyday life. Although there are some general parameters, the unique characteristics of each living human being predominate. Coping with the routine of life occurs through exposure to joy and sadness, achievement and loss, happiness and suffering. Many of these experiences are shared in a family setting.

I usually spend time for both, because I am aware that both the patient and his family are suffering and in need of attention. In addition, assistance must be simultaneous. Although the priority is the patient, it is necessary to understand that he is included in a family emotional dynamic, which will influence him. Many of the defense mechanisms used by the patient can also be observed in their families. They are two parallel universes and not necessarily in perfect harmony. Often, I utilize a strategy to demystify the problem. At the first meeting, I talk directly to the patient and ask for his permission so that family members can fully follow the consultation. I ask the patient to give a spontaneous report of his clinical history. I listen with attention and respect. I try not to interrupt, even when there is some inaccuracy or failure in the logical sequence of reasoning. Likewise, I also request that the family does not interfere with the patient's report, even when there is disagreement about facts. I inform family members that I will also listen to them afterwards. Both of them will have the opportunity to express their feelings and I will be there to listen carefully. The first meeting has as main objective the control of anxiety. It is a cathartic process, in which the doctor identifies the emotional profile of the patient and the family. Doctor's initially passive attitude reveals a lack of censorship.

During the physical examination, the patient decides whether he wants to be alone or accompanied by family members. The examination room has a partial division that provides adequate privacy for the patient. I do a complete examination, always anticipating and explaining, directly to the patient, what each stage consists of and what its purpose is. Even if it is not the most advisable, I usually remain in dialogue with the patient during the exam, describing the findings in a simple and clear way. This attitude leads to a condition of safety and relaxation, just as they demystify the disease. On purpose, I don't speak to family members during the exam, although they overhear the conversation. I take advantage of partial privacy to allow the patient to feel free from family surveillance, promoting independence and self-confidence. I respect all defense mechanisms, as the reports are restricted to the facts and not to their interpretation. This can be done at another time, when the psychological condition of the patient and family would be more favorable.

Cancer usually is a chronic disease, but its diagnosis is acute. When it occurs, an emergency sensation arises in the patient and family. Everything needs to be solved immediately, which leads to some patient's hasty and wrong decisions, motivated more by emotion than by reason. Doctor has to take the lead in conducting disease confrontation, which implies in a doctor-patient relationship of mutual trust. For this reason, the first consultation is focused on the emotional stabilization of the patient and family. Doctor has to be proficient and calm. Rare types of cancer present themselves as emergency situations, where decisions have to be taken immediately. Most of the time, there is enough time for a careful evaluation, both of the diagnosis and of the best treatment alternatives. I often quote that colorectal cancer usually takes more than five years to develop as an invasive malignancy. Likewise, other frequent malignant tumors also have a prolonged lag time. It is not an infectious disease, with onset and rapid evolution. The risk of contagion is restricted to anxiety, which needs to be controlled, before it reaches proportions that obscure patient's free will.

My strategy for achieving the best result involves the sequential approach. I am aware that not everything is clear at the first consultation. It is used only to control anxiety, provide preliminary information about the disease and establish a general care planning. All information will be dictated by the patient's rhythm, respecting his defense mechanisms. At the same time, doctor's professional security and mood stability need to permeate the relationship. Timing for emotional care of patient and family should be dissociated from the practical recommendations to be taken immediately. The sequential approach implies as many consultations as are necessary for the best problem-solving. Most patients progress rapidly through the five stages of loss, eventually suppressing some of them. Others need more attention because they keep stuck longer in a phase of denial or depression. Emotional decision-making follows the patient's pace. However, no exam or recommendation for cancer treatment should be postponed until the patient reaches the acceptance stage. This type of dissociation is supported by affective care, which is based only on the relationship of trust. Some patients never migrate to another form of care, others evolve to an inquisitive attitude, characterized by questioning the recommendations and the results. Over time, most patients reach the acceptance stage, many with treatment already underway. Only, rare cases were permanently trapped in a specific defense mechanism.


To be continued in PLOT 6 (resolution) …

* Attention: The story 7 was published sequentially from PLOT 1 to PLOT 6 and you will always see the most recent posting. To read Story 7 from the beginning, just click in the numbered links located at the bottom of the homepage. 


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James Fleck, MD, PhD: Full Professor of Clinical Oncology at the Federal University of Rio Grande do Sul, RS, Brazil 2021