May 6, 2002
The Psychological Challenges Facing Melanoma Patients
Andrew W. Kneier, Ph.D.
The Need for Proportion and Balance
Obstacles to Proportion and Balance
How Physicians Can Help
There are better and worse ways of coping with a melanoma diagnosis, or with any life-threatening illness. Better or worse in the sense that some ways of coping have been found to promote the process of psychological adjustment and to foster emotional well-being over time, while other ways of coping are less successful along these lines (1). The difference in outcome is one of degree: the better ways are not perfect, and worse ways are not totally useless. All ways of coping have an adaptive intent, for that is explicit in the concept of coping (2); but some ways lead to more adaptive outcomes.
As a construct, coping includes emotions, attitudes, and behaviors. These are inter-related: how a person feels implies certain attitudes and beliefs, and these in turn result in certain behaviors. The better ways of coping with a serious illness, as several studies have shown, include certain key characteristics: for the patient to face the reality of his or her illness and seek to learn about it, the relevant treatment modalities or options, and factors relating to prognosis(3,4); for the patient to experience an emotional response that is proportionate to this reality (I will return later to what this actually means) and to express these emotions (5); for the patient to adopt an active, participatory stance....which involves the feeling of self-efficacy (that the person is an active agent that can influence psychosocial and/or medical outcomes) and behaviors that stem from this feeling(6, 7); for the patient to have a perspective on illness as part of the human condition (as opposed to feeling singled out for adversity or deserving of it); and for the patient to reach out for interpersonal support and help and to include loved ones in his or her illness experience (as opposed to stoically going it alone or protecting others from one's experience) (9, 10).
There are many factors that determine the degree to which a patient achieves these coping characteristics. One's personality, past coping style, and current psychosocial situation are all important(11). Certain social expectations or norms about positive coping behavior also influence the person, often in non-constructive ways (12). Illness often takes on certain meanings in the context of one's personal life history (e.g., as a kind of crowning blow in light of other traumas in the person's life), and these also influence the patient's emotional and coping reactions. The attitudes and expectations of the patient's physicians also affect how the person copes. If we had enough information about all these factors, for any given patient, we would be able to predict a kind of coping profile that the patient was likely to display.
In this essay, I want to focus on the challenges and dilemmas facing melanoma patients with regard to their emotional reactionsto their diagnosis and the prognosis associated with it. How patients feel, of course, is not the only the aspect of their coping response. But it is a central component of their lived experience with the threat posed by the disease. Moreover, how patients feel usually implies a great deal about their psychological make-up and cognitive appraisals about their illness, and also leads to certain behavioral coping responses (2). As the following discussion will show, there are many conflicts and dilemmas that complicate how patients feel and their striving to feel how they should (i.e., to adopt emotional responses which are optimally adaptive and right for them).
I mentioned above that the most adaptive emotional responses are proportional to the reality of one's illness. In principle, this means that a patient is not overlyworried, upset, and preoccupied; and also notoverly cheerful or complacent. For purposes of discussion, which I will follow throughout this essay, let's consider a patient with an average-risk melanoma (the average 5-year mortality threat posed by a primary, cutaneous melanoma is 17 %; of course, many lesions are lower-risk than this, and many are higher-risk, but the average risk is 17% (13). Suppose an average-risk patient was found to be clinically depressed, was feeling hopeless and expecting the worst, and giving up. We would conclude that this patient was overreacting -- that is, reacting as if the diagnosis was much more ominous than was in fact the case. Alternatively, if this patient was rejoicing that the risk was only 17% and denying that he or she was at all worried or upset, we would conclude that the patient was underreacting -- that is, reacting as if the diagnosis posed virtually no life-threatening risk.
In reaching these conclusions, we might want to avoid being too judgmental or critical. We might acknowledge, in the first case, that the diagnosis of a potentially fatal illness must feel like a death sentence to the patient (even though the risk is 17%, not 90%); in the second case, it must feel like an insignificant risk. Hopefully, we would at least wonder why it felt that way to the patient in question, and seek to understand the various issues involved. As we will see, there are many factors that come into play.
The main question is this: what kind of emotional response would be proportional to this medical situation and the prognosis associated with it? Certainly the medical reality is ambiguous, consisting of positive and negative possibilities, and therefore warrants a mixed response. On the one hand, the patient has an 83% chance of doing well, such that hope, optimism, and the expectation of a positive outcome is warranted. On the other hand, the patient has a 17% chance of dying of melanoma within 5 years, such that worry and sorrow (for oneself and for loved ones, who must also live with this threat over them) is also warranted. A proportional response, therefore, is one that takes into account both the 83% chance of doing well and the 17% chance of dying.
It should also be a balanced response, in this sense: when the patient is feeling worried or upset, these feelings should be reduced in intensity, or tempered, by feelings of hope and optimism (14,15); and the nature and intensity of these positive emotions should also be tempered by, or take into account, the 17% threat....otherwise the patient's optimism would involve a denial or negation of this threat. As an acknowledgment of this reality, and as a way of working through the emotions that stem from it, the patient needs also to experience a proportional degree of worry and sorrow (3,4). Optimally, the positive and negative feelings will balance each other, in the patient's overall experience, such that he or she will neither be overreacting nor underreacting to the medical realities. Moreover, such a proportional and balanced response will feel right to the patient: that he or she is coping well with the uncertainty inherent in the medical situation and which persists during the years following a melanoma diagnosis -- neither dwelling on nor denying legitimate fears, and maintaining an appropriate overall optimism through it all.
The old adage, Easier said than done, certainly applies to this situation. This kind of ideal emotional response -- well-proportioned to the reality of one's illness, and well-balanced -- is seldom achieved by most patients, although they often reach some approx-imation of it, to varying degrees. There are many complications, conflicts, and obstacles along the way, as the following discussion hopes to clarify.
It is a common experience for patients to be overly worried or upset, to deny or avoid legitimate negative emotions, or to vacillate between negative and positive emotions.....often feeling in an overall quandary as to how they should feel. The right proportion and balance is often difficult to define or achieve, for several reasons:
Who is to say how a patient should feel about a 17% chance of dying of melanoma within 5 years? No where is this written or chiseled in stone. Many patients have asked me, pleadingly, "How am I supposed to feel about all this?" Conceptually, we can say that the patient should experience a degree of worry that is proportional to the 17% risk, and a degree of optimism that is proportional to the 83% survival chance. Proportional here means commensurate with and warranted by -- for example, a degree of worry that is commensurate with and warranted by the 17% risk. Degree refers to how much, which is inherently subjective and impossible to define.
This is also an individual matter, in the sense that the feelings that are warranted by the 17% risk will be different for each person, depending on that person's age, current life situation, and past history. For example, a greater degree of emotional distress seems warranted for a patient who is only 30 as compared to a patient who is 70. A patient who had suffered a long history of adversity might understandably be more depressed over a melanoma diagnosis, and fearful of a poor outcome, than a patient who had enjoyed a long history of good fortune and had a greater basis for optimism.
2. Interpersonal dynamics.
A patient may feel pressure not to experience a proportional degree of worry because his or her loved ones do not want the patient to worry and encourage the patient to be positive. In other words, the patient does not have permission within the family to feel appropriately worried or upset. Many patients have told me that they feel they are letting others down when they acknowledge or show negative feelings. It is also very common for patients to protect their family by adopting a positive demeanor and seldom showing their true feelings. The patient sees or knows how worried and upset the family is, and does not want to contribute to that by expressing his or her own worries.
In many cases this is simply concern for the family, but in others the patient actually feels guilty about the impact of their illness on the family. This adds a further complication, because their guilt causes them to feel responsible for alleviating the family's distress. They dare not show how worried or upset they are because the resulting distress within the family would create a burden on them to make family members feel better. Finally, some patients dare not show their emotions because they fear (perhaps correctly) that others will not respond with appropriate support; thus, they would end up feeling rejected and hurt in addition to feeling upset over their illness. All of these interpersonal issues and dynamics make it difficult for patients to experience or express an appropriate degree of worry or sadness.
3. Pressure to be Positive.
There is a widespread belief in our society that cancer patients who maintain a positive attitude are more likely to survive, or to survive longer, than patients who are worried or upset (12). Thus, when patients show these negative emotions, they are encouraged to be positive, and are often given a pep talk that focuses on the encouraging or hopeful aspects of one's situation (and which often denies or downplays the worrisome aspects). When patients are feeling optimistic, they are usually complemented for how well they are doing. They are seldom told, when feeling upset, that these feelings are warranted, that it is psychologically healthy to express them, and that the patient is not alone in feeling them because they are shared by his or her loved ones.
The focus on being positive has two negative effects on patients: it causes them to suppress their fears (because they too believe that they should only feel positive, or to comply with the wishes or needs of others); and it causes them to feel more fearful precisely because they are upset. They fear that the negative emotions they are experiencing will make a recurrence more likely. The first negative effect can cause them to underreact, and the second can cause them to overreact (that is, their degree of worry is out of proportion to the threat of their illness because they are worrying about being worried).
The purported prognostic benefit of a positive attitude is not supported by the scientific literature (for review, cf 16). However, there is evidence that stress compromises the immune response (17, 18), and that coping with stress in positive ways is associated with improved immunity (19) and, with melanoma patients, with lower incidence of recurrence(20,21). One important aspect of "positive coping" is emotional expression (5,22), and another is the enlistment of emotional support (9, 23). These require the experience and acknowledgment of the stressful emotions that accompany a melanoma diagnosis.
4. Past Coping Style.
Patients bring to their melanoma experience a coping style that developed in relation to previous stressors, and this style is then brought to bear in how they cope with melanoma. The circumstances which gave rise to this style, as a means of adapting to them, usually do not apply to one's current situation. For example, it may be adaptive for a young boy to keep a stiff upper if showing hurt feelings led to ridicule by his father or caused his mother to feel more burdened than she already was. Such experiences, over time, would give rise to a style of suppressing stressful emotions due to the dangers associated with expressing them. If the person was diagnosed with a life-threatening disease, it's emotional impact would be largely suppressed.....or perhaps tentatively expressed as a trial balloon, to see how family members or caregivers responded. An alternative example would be a child who found it adaptive to cope with potential problems with hyper-vigilance (suppose she needed to be acutely aware of the moods of an alcoholic parent in order to avoid trouble or to intervene effectively). As an adult with a melanoma diagnosis, she might find herself dwelling on the possibility of a recurrence and worrying excessively about it. The point here is that the coping style that patients bring to their illness can cause them to either underreact or overreact to it.
5. The Meaning of Illness.
It is not uncommon for patients to attribute certain negative meanings to their melanoma diagnosis -- that is, that it means or implies something negative about them. One reason for this are the cultural implications of good fortune and misfortune. When things are going well for us -- in our personal lives, and in enjoying good health -- we tend to assume that we are doing something right, living on the right track, and must be deserving of our good fortune. The flipside of this assumption is that misfortune takes on a certain meaning -- i.e., that we were not so deserving of our good fortune afterall, perhaps due to some flaw in our character, having the wrong priorities, or living under too much stress. When people suffer the misfortune of a cancer diagnosis, therefore, they find themselves searching for certain causes in themselves or their personal history. For example, a patient may feel that the cancer is a bodily manifestation of some defect in the self, or that he or she is being punished for some past sin. In other cases, when the patient has suffered a history of abuse or adversity, the diagnosis of a cancer can feel like the crowning blow, as if it proves that the deck is stacked against the person and that he or she must be undeserving of a decent life. Although cancer is a biological disease, it tends in our culture to somehow implicate the person and the person's life, and these meanings can severely affect a patient's emotional response.
6. The Dangers of Optimism.
While a proportional degree of optimism is an essential aspect of a positive coping response 9,14, actually feeling optimistic can be problematic.... and these problems can lead a patient to feel more pessimistic than is warranted. When a patient is feeling optimistic, especially for a sustained period of time, it can give rise to the feeling that he or she is not worrying enough about cancer. Not worrying enough means that the patient is not giving cancer it's due, is acting too bold or confident in the face of it, and is thereby asking for trouble....as if the cancer will come back to teach him or her a lesson. Sometimes this is a superstition (that cancer will be provoked if not taken seriously enough) and sometimes it is more a punishment fantasy (that the patient will be punished for being bold or strong).
An additional problem with optimism is that it implies that one is deserving of a good outcome. Patients do not consciously say to themselves: "I deserve to survive, and am therefore optimistic." However, they would not feel optimistic if they did not feel deserving of survival. The problem arises when they are confronted with the fact that other patients, with a similar diagnosis, have died of their disease. The patient may try to rationalize that these patients were somehow less deserving, or that their survival was somehow less important to them, to their family, or to society. Such rationalizations seldom hold up, and the patient is confronted with the fact that survival has nothing to do with deservedness. The patients who died were no less deserving of survival than he or she. Thus, the patient's optimism begins to feel arrogant and presumptuous. I have heard patients in support groups say: "I really have no right to feel optimistic; look what happened to so-and-so." A patient's legitimate optimism, based on the applicable survival statistics, can be eroded in this process. (Upon further reflection, we might say that optimism is the wrong construct; actually, it is realism that patients should strive toward, with the acknowledgment that a good outcome is a realistic expectation and that a poor outcome is a realistic possibility).
Patients may not only feel that their optimism is presumptuous when patients with a similar prognosis die; they can also feel guilty about the favorable odds that apply in their case because so many other patients have a worse prognosis. Normally, patients are grateful for this relative good fortune, but they do not feel entitled to it (especially when others are more gravely afflicted) and therefore feel guilty about enjoying this good fortune by feeling optimistic or by going forward with their lives in a positive and constructive manner. It is not uncommon for patients who have a favorable prognosis to nonetheless put their lives on hold, waiting to see whether a recurrence will develop. They do not feel comfortable with the position: "I'm going to take advantage of my good fortune by pursuing a happy life." It does not feel right to do so. (This is related to the survivor guilt found among Holocaust survivors who felt guilty about enjoying their survival and taking full advantage of it; instead, they tended to identify with those who died by living deadened lives characterized by depression and passivity).
7. Response of Physicians.
Patients' emotional responses to their diagnosis is significantly influenced by what their physicians tell them about it and the manner in which they do so. Unfortunately, patients are often told that their diagnosis is either more or less serious than is in fact the case (those of us at the Melanoma Clinic at the UCSF Comprehensive Cancer Center know this from first hand experience, as the majority of patients of who visit the Center have impressions about their prognosis -- reportedly based on their discussions with their physicians -- that are not accurate). The demeanor or bedside manner of physicians also influences the patient's response. For example, a physician might convey, in his or her tone of voice and body language, that the patient's diagnosis is quite ominous, even if the content of the information provided is more favorable.
One aspect of the good patient role is to conform to the expectations (real or imagined) of one's physicians, and patients often come away from their interactions with their physicians with impressions about what sort of emotional response is expected or desired. For example, a physician who gives a patient an encouraging pep talk may inadvertently convey that the patient should only feel optimistic. Or a physician who makes a concerted effort to impress upon the patient the seriousness of the diagnosis may inadvertently convey that only worry is warranted or at least is more appropriate than optimism. In such cases, the patient's emotional response can be affected by these messages, contributing to an underreaction or overreaction to the diagnosis.
The point of the above discussion is not that achieving a proportional and balanced response is virtually impossible; indeed, it is impressive that so many patients do so well in this regard, given the numerous complications and obstacles that exist. On the other hand, there are many patients who, because of the difficulties discussed above, do not experience an appropriate emotional response and whose psychological adjustment to their illness is thereby compromised. When patients overreact, they live with more anxiety and depression than is warranted by the reality of their medical situation, and may feel too hopeless or helpless to take the action necessary to promote their recovery (i.e., obtaining the necessary medical workup, treatments, and follow-up care; or by making changes in their life-style or health habits that could have positive immune benefits). When patients underreact, the emotions that naturally come with a life-threatening diagnosis are suppressed, such that the process of working them through, and obtaining emotional support, is seriously hindered.
Physicians can help considerably by being more aware of the many factors can cause their patients to overreact or underreact and by discussing these matters with their patients; and also by making a referral for a psychological consultation when warranted. In the final section, I will discuss some ways that physicians can help patients to achieve a proportional and balanced response.
The most important rule of thumb is this: physicians should adopt the same attitude about their patient's melanoma that would be optimally adaptive for the patient to adopt. This means that physicians should convey -- in their attitude, demeanor, and the information they provide -- both sides of the patient's medical situation: that the diagnosis poses a serious threat, that must be taken seriously, and that the patient would understandably feel worried and upset; but also that chances of a full recovery are favorable, and that hope and optimism are also warranted. Ideally, the physician would convey an appropriate degree of personal worry or concern, but also that he or she genuinely expects a good outcome.
By adopting a stance that neither minimizes nor exaggerates the threat of a patient's diagnosis, the physician is responding in a manner that it proportionate to the degree of this threat, and is thereby modeling for the patient the kind of response that is appropriate and psychologically healthy. Patients often follow the lead of their physicians in how they approach a medical problem. One reason for this is that physicians often demonstrate a kind of ego strength, in the face of the danger posed by a cancer diagnosis, that the patient can borrow in the relational dynamics between doctor and patient. For example, when a physician shows that he or she is not uncomfortable in acknowledging the possibility of death, then the patient often shows a greater internal strength to face this possibility as well. On the other hand, if the physician avoids this topic, skirts around it, or downplays it, it conveys to the patient that the topic is too threatening to face, and the patient will tend to avoid it also...specially in his or her interactions with the physician. The dynamics are similar with regard to hope and optimism. If the physician acts as if a cancer diagnosis is a virtual death sentence (when it is not), then the patient's legitimate reasons for hope and optimism are undermined. If the physician acts as if the emotional trauma of the diagnosis must be devastating, then the patient's internal resources to cope well are implicitly challenged.
These points are especially germane to telling patients about a diagnosis of malignant melanoma. On the one hand, many patients are aware of melanoma's bad reputation and assume that it is the "worse cancer." For other patients, just the words "cancer" or "malignant" mean a virtual death sentence. On the other hand, many patients regard the diagnosis as "only skin cancer" and assume that it is easily curable with local excision. For these reasons, it is important for physicians to explain the potential danger of melanoma, because of the possibility of metastases, but also the fact that the majority of melanomas do not metastasize.
Newly-diagnosed patients are often taken aback to learn that there is no way of knowing whether their melanoma had spread or will recur. Due to lack of knowledge about cancer, they had assumed that the metastatic work-up would answer this question. Instead, they learn -- if they are properly informed by their physicians and through their own reading -- that their primary lesion posed a certain chance of spreading because of it's location, thickness, and level of invasion. Thus, they are left in a profound, existential uncertainty about whether they will survive this diagnosis; either they will or they won't, and all they have to go on -- in gauging how to react emotionally to this situation -- are the statistics that apply to similar cases. These, as we all know, say nothing about what will happen to them as individuals; they only say what will happen to a certain percentage of the patients in their category. Patients often say it feels like they are sitting on a time bomb, not knowing if or when it will go off. Time will tell. And in the meantime, they have to figure out how to feel, what to think, and what to do. Their challenge is to respond in ways that promote their overall psychological adjustment to the deeply unsettling "life in limbo" that follows the diagnosis of melanoma.
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by Andrew W. Kneier, Ph.D.
UCSF Melanoma Center
P.O. Box 7921
San Francisco, CA 94120