Number 9 Cancer Communnication and Ethics

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 9 Cancer Communications and Ethics

During the communication period between a cancer patient and their physician there often arises several ethical issues concerned with areas associated with cancer treatment (informed consent, treatment options, and clinical trials), long-term care (hospice), and the right to die (do not resuscitate). These ethical issues tend to become increasingly complex as the patients disease progresses. Family involvement with the process at these times is very important. Ethics come into play very early in the process of diagnosis. There are two very sensitive areas where physicians have to use their communication skills to allow the patient to not only understand what’s happening, but also prepare them for what’s to come as far as their cancer is concerned. The initial ethical even is telling the patient that they have cancer, which is really “bad news”. This would seem simplistic, but its not. Telling a person that he or she has cancer it a life-changing event and the way this information is given is very important. There have to be reassurances that the problem can be dealt with so that the treatment will not totally disrupt the person’s life. These reassurances are very important because of the potential devastating psychological effect of the information. Recently there has been an effort to train physicians to deliver this news in a more respectful manner. Full disclosure is the other area where ethics come into play. Again, it wouldn’t seem like telling the complete truth to a patient about their diagnosis is an ethical issue, but it is. In many counties (Japan, Russia, Eastern Europe, and China) the physicians do not tell their patients they have cancer. This has to do with cultural tendencies. These cultures are very sensitive to the psychological well being of potential cancer patients. As a result of this social component often a physician will tell a patient that they are suffering from a less serious disease such as gallstones or a blood disorder when in fact the patient has cancer. The problem here is that Western physicians are not completely prepared to give such “bad news” to patients that originate from the counties mentioned above. This is an ethical problem because it certainly is wrong to not tell a person that they have cancer, but the fact is that in doing so there may be irreparable psychological harm to the patient.

The right to die is another issue where ethical issues come into play. This has to do with informed consent. Patients at times are required to sign documents that give their physicians the legal rights to not only administer treatments, but also give them the authority to decide when the patient should not be put on life support. The real ethical issue here is the “do not resuscitate” form or DNR. Once the patient signs this document, the physician can, at his or her discretion, allow the patient to die without the use of life-support or further treatments. However, many patients decide not to sign and there is a conflict. The problem here is that because of modern technology a person can be sustained for a long period of time. A cancer patient that lapses into a comma may or may not recover and its up to the discretion of the attending physician and family to remove the person from life-support. This procedure is not only expensive, but also emotionally draining for all those involved. Physicians are often put in a position where they have to make a decision, despite the wishes of the family. There are many sides to this issue and some controversy. One side of the DNR issue is one that has to do with the amount of psychological stress this puts the patient under when it comes time for the physician to discuss the topic. As had been discussed earlier, psychological stress of a patient is a major factor related not only to their wellbeing, but also their health during the entire experience of having cancer. It’s been shown that the best way a physician can handle this situation is to do it in increments and not completely disclose the information initially. This is similar to the non-disclosure of a cancer diagnosis, except that it surrounds the issue of death. Here in the West, once the physician and the patient arrive at an agreement about DNR, the patient is the one who signs the order. However in China, which has the policy in place for their cancer patients, the patient usually does not sign the form. This is a cultural practice related to cancer non-disclosure in non-Western counties and in fact a high percentage (compared to the West) of these patients are sent home to die.

These ethical issues, and a few more, are a constant source of debate between ethicist, philosophers, and physicians. There is however a central theme and that is exactly who gets to decide what about a cancer patient in a life-threatening position. The above comments in no way describe the state of medical ethics related to cancer, but are merely a glance at the ever-changing area of cancer care. Several salient points can be draw from this investigation. The first is the psychological impact these issues have on the patient and their families (to be discussed later). The other issues are related to recent changes in the way physicians are being trained to deal with ethical dilemmas, which unfortunately are a part of the experience of having cancer. It was mentioned earlier that there was a certain unpredictability involved with cancer. This unpredictability has to do with the response to treatments and whether or not the disease will come back. However, there is another aspect to cancer that unfortunately is predictable. Because of the large number of cancer deaths physicians are usually able to give terminal cancer patients accurate information about when the will die. How the physician communicates this and to whom is dependent multiple factors. Factors such as with eastern decent patients, who many times are not informed of the exact time of death, and family members of an incapacitated patient, have to handled with care. Medical ethics is an ever-changing field, but in the end, the hope is that all parties involved with cancer can benefit from these changes.

Number 8 Cancer Treatment

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 8 Cancer Treatment

The nature of cancer treatments, to a certain extent, has evolved over the last 30 years. However there are some lingering problems such as general toxicity and the use of chemotherapy as a shotgun. That last statement refers to using compounds that inhibit rapid cell growth, which includes rapidly dividing normal cell. Early treatments for cancer used chemical agents (chemotherapy) to retard the rapid growth of cancer cells. Scientists who identified the fact that cancer cells have a higher metabolism than normal cells developed these chemical treatments. Cancer cells take in more nutrients and substances at a higher rate than their normal counterparts. Scientists also found that if they administered low doses of a toxic chemical, the tumor cell would absorb more of it and die. But prolonged exposure to these chemical agents produced harmful side effects. One immediate effect of this type of chemo use is hair loss. Because the cells within hair follicles have a high metabolism these drugs target them. Despite this, their use has been successful in treating many malignant cancers. Anti-cancer drugs have a long history that go back as far as the 1930’s where Yale researchers became interested because of the effects of mustard gas in an accident. Apparently the victims of this accident were completely devoid of an immune system and had vastly lower numbers of white blood cells. The gas had eliminated the lymphatic system, which contain these rapidly dividing cells. The scientists got the idea to use an injectable form of the active compound because of a type of cancer called, lymphoma (white blood cell cancer), which at that time was deadly. These patients made a remarkable, but transient recovery.

One agent used in early treatments was called Mitomycin-C. It was a by-product of a certain type of bacterium and later made in the lab. It has the ability to cross-link the DNA chains. The cell is unable to divide because the separation of DNA is an essential component of cell division (mitosis).

In early studies, the doses were too high and sometimes led to the death of the patient. When the chemical is dissolved it displays a deep blue color. In the initial trials, it was clandestinely termed “The Blue Death” after a rat poison. Extensive clinical trials have proven that at the proper dose and rate it is effective against esophageal cancer, breast cancer, and bladder tumors. It also is used in the laboratory so that scientists (mostly tumor immunologists) can study immune T cell responses to tumor cells. Since the tumor cells cannot divide after Mitomycin-C treatment, the only measurable cell division comes from the stimulation of T cell nuclear replication and cell division induced by the inactivated tumor cells.

The evolution of Mitomycin-C from toxic chemical to a useful chemotherapeutic agent took years. Today, chemical agents used for cancer therapy are designed to attack specific tumor cell products that are unique to the tumor, which can lead to the death of only the cancer cell. This type of chemical therapy reduces the side effects normally associated with use of broad-spectrum chemical agents. Broad-spectrum agents would

often weaken or severely deplete the very cells (immune cells) in the body capable of removing the cancer cells. Broad-spectrum chemotherapeutic agents, including the ones mentioned above, are toxic to the body to one degree or another. The problem is the age of the patient. Two patients with the same cancer diagnosis but 35 years apart in age may get different modes of treatment or different doses of the same chemical. The younger

patients (say, 20 years old) can withstand a higher dose for a longer period of time than the older patient (55 years old). Therefore, the prognosis (possible outcome) of the same type of cancer can be better for a younger person. This is simple physiology, but there are exceptions and in some cases completely opposite results. This is the nature of chemotherapeutic treatment. Scientists are now recognizing that the response of a tumor to chemotherapy is related to the genetic make-up of the patient. Scientists noticed that patients with the same type of cancer who responded positively to a given agent had identical genetic markers. So, in a new approach, they could design these drugs around the genetic make-up of the patient. This is an ever-changing field of scientific research, which will be joined by a newer type of cancer treatment called Immunotherapy.

So what is immune-based therapy (immunotherapy) for the treatment of cancer and how did it start? This type of treatment began in the mid-1970 while scientists were studying a mouse tumor model. The tumor was blood-born and usually lethal, but they found an active immune response to the tumor. The tumor cells were grown in the lab. Once the cells were inactivated (using Mitomycin-C) they were cultured with normal mouse lymphocytes (T cells) over a series of days in a temperature and gas controlled incubator. After this culture period it was found that the T cells had become immune to the tumor with the ability to kill them. Subsequently, massive amounts of these T cells were produced. Mice were given an inoculation of small numbers of live tumor cells followed by an injection of tumor-immune T cells. Under controlled conditions it was discovered that the mice that received the immune T cells survived much longer then those that did not. This technique was called “adoptive transfer”. This ushered in an entirely new approach to treating cancer. Recent advances in genetic transfer have allowed scientist to genetically engineer T cells to make them recognize the tumor. This means that normal T cells can be removed from the body, genetically altered and then returned to the circulation to fight the tumor. This technique is used in conjunction with natural immune-stimulating proteins such as lymphokines. This is how the natural processes of the immune system can be manipulated to fight previously lethal cancers and is described in a very simplistic manner (Alexander 2011).

Number 7 Psycho-oncology and Patient/Doctor Communications

The plan is for me to write a series of blogs about cancer.  You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer.  First of all, why should I do this and what qualifies me to do so?  The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients.  I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease.  However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer.  I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand.  That’s the answer to the first question, which is why I should do this.  The first step in overcoming anything is to understand it first.  With that being said, here they are:

Number 7                                    Psycho-oncology and doctor patient communications

Changes related to the psychological treatment of cancer patients due to cancer-induced stress.

            One of the things about cancer, which is unlike many other diseases, is that cancer is not only a physical ailment, but a mental one as well.  Because cancer patients receive more extensive treatments than ever before and more of them survive longer, there has been the development of a relatively new field.  This field is called psycho-oncology and deals exclusively with the psychological problems caused by cancer.  This field of psychology got its start in the early 1990’s and was first recognized in Europe as a way to not only improve cancer patient quality of life, but survival of a disease that in some respects flourishes during stressful periods of a patient’s life.  The continued survival of cancer patients due to new therapies and the extended amount of time a cancer patient had to “live” with their cancer was the main impetus for the creation of psycho-oncology as a major branch of psychoanalytical study.  The field of psycho-oncology not only addresses the various emotional stages with specific therapies, but also encompasses another branch of psychology called psychopharmacology.  This has to do with the administration of specific psychoactive drugs to deal with the stress of cancer.  Many of these drugs are antidepressants, but many deal with common cancer-related problems such as sleep disorders, nauseas, vomiting, seizures, and anxiety.  Most importantly many of the treatments associated with psycho-oncology are related to terminal illness and aspects related to end-of-live issues.  These issues not only involve the patient, but also family members.  Often this area of cancer is never addressed until that time comes, but because of the strong emotional impact there is a need for psychological intervention.

K.            Patient/physician communications.

            Communication associated with cancer starts immediately after a person has been diagnosed with the disease.  The first step is the consultation between the patient and the attending physician who must first describe the particular type of cancer (diagnosis), discuss the possible medical consequences (prognosis), and then outline the possible treatment options available to the patient.  This last part (treatment) is complicated and difficult to explain because of not only the highly technical nature of cancer treatment, but also the number of variables such as age, type of cancer, and affordability that are involved.  The results of these discussions as far as “patient satisfaction” with the physician’s communication style are also somewhat difficult to assess for a similar reason, which is the number of variables involved.  For instance a patient can be very satisfied with the physicians communication style if the medical care they received was successful, which in reality had nothing to do with what the physician said.  However, on the other hand, if the physician used an authoritarian (dominant over confident) style vs. an affiliative (self-association) style of communication this would lead to a negative satisfaction rating.  Clearly the patients were paying attention to the physicians in this case, but how they decided their satisfaction with their discussions and treatment had more to do with “how” they were told rather than the content of what they talked about.  Many physicians feel as though they are giving patients too much information for them to understand in time to make decisions about treatment options.  This is particularly true when patients enroll in an experimental clinical trial.  However, a study was done that demonstrated a contrary response to the physician’s views about that information when patients were asked that very question about too much information.  Many of the patients (enrolled in a clinical trial) felt that they were given adequate information and time to understand it. 

Another aspect of understanding basic communication in cancer is something that was mentioned earlier called an affiliative style, which has to with the physician’s ability “self-identify” with the patient.  This is a subtle part of communication that has to facial expressions, body language and voice tone, or in other words “non-verbal communications”.  It turns out that this is a very important aspect communication as far as patient satisfaction with the doctor/patient interaction, which is based on basic communications.  To a certain extent for a physician, this form of communication is an “art” and the physicians who are very good at it tend to get the highest ratings as far as patient satisfaction is concerned.  This form of physician/patient communication is more focused on the patient as a person and tends to garner a sense of trust, which is needed in order to successfully treat the patient.  Much of information offered above directly relates the patient’s perception of the physician’s ability to communicate the information needed to help them understand their diagnosis with cancer and the events that will follow that diagnosis.  However, effective communication and perception of how that information was given is central to basic communication about cancer and in part, dependent on the educational level and emotional state of the patient.  The above-mentioned studies do demonstrate that communication between a cancer patient and their physician is based on a more personal approach to the transfer of information.  If this type of communication done correctly it can lead to a patient that is satisfied that he or she has been given adequate and satisfactory information about cancer in order to make the proper decisions about their care.  However, if these information transfers are done without this “personal approach” it can lead to improper decisions that are inconsistent with the patient’s personal preferences because the patient feels obligated to do what the physician tells them to do.  In the end this leads to patient dissatisfaction not only in terms of the communication style of the physician, but the results of a treatment that the patient really didn’t want in the first place.  In this case, the result was that the patient was unhappy about the treatment given because it did not conform to their personal preferences.  However, as mentioned above, if the initial communications between the physician and patient are inadequate, but the treatment is, the patient can still be unhappy about the treatment.  Therefore, how this information about the patient’s cancer is delivered is very important because this phase can affect a patient’s perceptions of their treatment, despite the fact that the discussions and the treatments are separate issues.  It is clear that the communication between a cancer patient and his or her physician can be complex and fraught with misunderstandings as the patient comes to grips with the problems associated with their cancer.  Despite these difficulties new cancer physicians are being trained to not only fully disclose the nature of the patient’s disease, but also how to tell that person that they’re cancer is terminal.                   

Psychological intervention methods and cancer survival

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 6 Psychological intervention methods and cancer survival

The earliest and most common form of psychological intervention used with helping cancer patients cope with their disease is Cognitive-Behavior Therapy. Even though there are several forms of this type of therapy, there are common themes associated with the practice of this form of psychotherapy. The initial goal of the therapy is to fully assess the patient’s emotional state. This entails recognizing maladaptive thoughts (inappropriate preconceptions), behaviors, feelings, and psychological reactions to related and non-related stimuli. For instance some cancer patients believe that a diagnosis of cancer is a death sentence and because of that belief loose the will to live. Friends and family can reinforce this type of maladaptive thinking by their treatment (catering to needs) of the patient. This type of situation often leads to a feeling of hopelessness, which often leads to depression. Cognitive therapy targets this maladaptive thinking by what is called cognitive restructuring, which allows the patient to replace the self-doubting negative thoughts. These thoughts were mentioned earlier and are often questions such as: “Why me?” “Why do I have bad luck?” and “I’m just waiting to die.” These thoughts are written out and beside them are written positive statements such as: “Anyone can get cancer”, “I’m not the only one”, and “It is not bad luck. It just happened to me”, as well as “I have plenty of time to do what I want in my life and I’m not giving-up.” The patient is instructed to construct this “two column” document, which allows the patient to view the maladaptive thoughts along side of the more rational statements thereby counteracting the depressive state. The “the two column” method is just one of the techniques used during the cognitive restructuring procedure.

Others include the “Didactic method” (promotion of healthy attitudes), the “Socratic method” (application of thought provoking questions), and “Self-statement Modification” (replacement of maladapted self-statements with adaptive ones). These methods along with positive imagery, hypnosis, stress management, and writing exercises allow the cancer patient to realign their thinking in such a way as to make the experience more like daily life instead of a nightmare they can’t wake-up from. Many of the techniques used in cognitive therapy are actually used to help the person not only mask the pain of cancer, but also to prolong life and increase health through imagery. As previously mentioned this psychological intervention has been show to not only increase the body’s ability to fight cancer, but also increase quality of life and cancer survival. However, cognitive therapist must us caution when using these technique to prolong life because it has been show that when they fail the patients enter a deep period of depression and possibly lapse into psychological/psychiatric morbidity. The techniques used in this type of cognitive therapy are intended to restructure the way the cancer patient thinks. Recently it was determined that there was a way to restructure the way the patient feels using a technique based on meditation.

This more recent and effective form of cognitive therapy used to treat cancer patients is called Mindfulness-Based Cognitive Therapy (MBCT). This type of therapy was developed to prevent relapse associated with major depression. Cancer patients often fall victim to depression so MBCT seemed like a good alternative to the standard cognitive behavioral therapy. The reason for this is that MBCT provides a way for patients to recognize the onset symptoms of depression (both mental and physical) and teaches an alternate way to respond to the symptoms, which allows preemption and prevention of the downward spiraling effects of depression. Standard cognitive therapy concentrates on modification of contents of erroneous thoughts and leads to their correction. The basis of MBCT is rooted in the technique of meditation and self-awareness. It has been show to not only reduce stress, but also chronic pain by letting the patient be aware of the thoughts and physical manifestations of the problem and accepting them. This acceptance leads to more control and more control invariably leads to a more positive attitude. Ultimately, patients treated with MBCT techniques accept aberrant thoughts and pain responses as passing mental and physical events and eventually abandon maladaptive thinking patterns.

MBCT use with cancer patients has met with significant success initially with breast cancer (BC) patients. Randomized controlled trails were performed on 84 BC survivors who were in various stages (0-III) of their disease, but were all within 2 years of surgery, radiation, and/or chemotherapy treatment. These patients were divided into two groups. One group received mindfulness-based stress reduction (MBSR) therapy and the other usual care. The six-week MBSR treatment resulted in significant improvements to the psychological wellbeing and quality of life in the participating patients when compared to the usual care control group. However the most interesting studies were the ones that are related to the reversal of stress-induced immune dysfunction, which was mentioned earlier. In that study, which was born out of the observation that stressed patients, had more leukemic relapses. Animals that were put under stress contained natural killer cells (NK cells) that were incapable of killing leukemic cells when compared to non-stressed animals with the same leukemia. In a recent study of patients with known autoimmune disorders there was a very similar observation concerning the reduction of stress through MBSR therapy. This group of patients had their blood drawn pre and post MBSR treatment and the samples were tested for NK cell cytolytic (killing) activity. Two weeks after the treatment the patients were assessed for anxiety and overall distress. In the patients that recorded improvement in overall mental well being there was a significant increase in NK cell cytolytic activity between pre- and post-MBSR blood samples. However, patients who reported no improvement in mental well being there was no difference in cytolytic activity between pre- and post-MBSR treatment. The most important study done in this area was done studying early stage breast cancer patients soon after diagnosis and prior to any treatment. As mentioned previously this group of patients are prone to a long series psychological distress symptoms. Patients in this study either volunteered for an 8-week MBSR program or did not (control group). Prior to the initiation of the program and before surgery and cancer therapy all of the women had reductions in NK cell activity (cytolysis) as well as diminished amounts of immune cancer fighting proteins (cytokines) when compared to similar non-cancer patients. Data collected four weeks post-MBSR treatment revealed that only the women who participated in the program showed increases (normal levels) of both NK cytolysis and cytokines, whereas the non-MBSR group continued to show depressed levels. In addition, there was a significant increase in the quality of life and ability to cope in the MBSR participants as compared to the non-MBSR group. It is clear that MBCT is a way for cancer patients, who are at various stages of their disease, to accept the changes (mental and physical) brought about by cancer. This acceptance fosters a lack of fear and allows the patient to gain control over a situation that was previously thought of as uncontrollable.