Patient Education and Counseling, 8 (1986) 35%365 Elsevier Scientific Publishers Ireland Ltd.

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GUILT AND SHAME IN THERAPEUTIC RELATIONSHIPS

JAMES W. PICHERT* and PEGGY ELAM

Diabetes Research and Training Center, Vanderbilt University, Nashville, TN 37232 (U.S.A.)

(Received May Zlst, 1985) (Accepted April 24th, 1986)

ABSTRACT

The ethical underpinnings of patient education require health care profes- sionals to deal with patients’ feelings of guilt and shame since both can nega- tively affect patients’ adjustment to illness and adherence to medical regi- mens. These feelings, whether realistic or not, can play a role in the therapeu- tic relationship from the moment the first examination begins. This paper identifies sources of shame and guilt and suggests strategies for patient educa- tors to minimize their effects.

Key words: Guilt - Shame - Patient-provider relationship - Ethics

INTRODUCTION

In April 1985, a lo-year-old girl with diabetes took her father’s pistol and shot herself in the stomach, reportedly because she felt guilty about eating part of a chocolate Easter bunny [l]. Fortunately, few people who feel guilty about real or supposed violations of a health care regimen go to such extreme behavior. The case does, however, raise ethical issues for patient educators with respect to the beneficence (inthis situation, their ability to recognize and resolve existing guilt and shame) and non-maleficence (their ability to avoid heaping unnecessary guilt or shame on their patients) of their educational services. Dr. Barnard’s article in this collection has already pointed to beneficence and non-maleficence as foundational in the ethics of patient edu- cation [Z]. These concepts clearly demand that patient educators prevent or minimize patients’ experiences with guilt and shame. This paper describes selected educational practices for doing so.

Guilt and shame, while distinguished in the psychoanalytic literature, are distinctly related [8-51. Guilt is generally considered to be self-reproach over

‘To whom correspondence should be sent.

07383991/86/$03.50 0 1986 Elsevier Scientific Publishers Ireland Ltd. Printed and Published in Ireland

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violations of internalized standards, whereas shame is associated with antici- pated or actual disapproval or scorn from others [6]. For instance, someone who had decided to quit smoking might experience guilt if he succumbed to the desire to light up. He might also experience shame if a relative who wanted him to quit discovered him smoking. Our purpose, however, is not to emphasize the differences between these two reactions, but to focus on their effects and their implications for patient educators.

EFFECTS OF GUILT AND SHAME

The effects of guilt and shame can be positive or negative, apparently de- pending on whether the guilt is realistic (where the person had the ability to influence a negative outcome but did not do so), or unrealistic (where the person had no control but still feels responsible), and how the patient re- sponds. For instance, patients who believe their illness is punishment for guilty wrongdoings may become angry or enraged [3]. If the anger is turned inward, the patient may become depressed and less responsive to treatment. If anger is channeled outward, the patient can become hostile and turn on the personnel caring for him [7,8]. Patients who feel punished may also paradoxi- cally resist medical advice as interference with the ‘deserved’ punishment [9].

Anger is not the only concommitant of guilt and shame. Abrams and Finesinger [lo] were concerned about cancer patients’ guilt because of the way it seemed to affect the patients’ behavior. Patients who felt guilty about their illness denied symptoms and thus delayed seeking medical treatment, felt infe- rior and inadequate, and were inhibited in communicating. Those who re- proached themselves for delaying medical treatment experienced intensified feelings of guilt. Those whose feeling of guilt stimulated attitudes of inferior- ity, inadequacy, dependency, and rejection had lower self esteem and seemed unable to rehabilitate themselves [lO,ll]. Similar reports have been made about people with arthritis [ 121 and bulemia [ 131. Finally, Felton, Revenson, and Hinrichsen [14] found self-blame significantly related to poorer illness adjustment.

Others have argued that guilt and shame can be positive, i.e. whenever they provoke us to action. As Kushner writes, ‘Sometimes we have caused the sorrow in our lives and ought to take responsibility.. . .A sense of our inade- quacies and failings, a recognition that we could be better people than we usually are, is one of the forces for moral growth and improvement in our society. An appropriate sense of guilt makes people try to be better’ [ll]. Conversely, patients who cannot or will not accept blame for illnesses over which they had control ‘may not be willing to alter previous detrimental behavior patterns’ [ 151.

Finally, in some cases patients’ self-blame and guilt feelings may be benefi- cial to their emotional well-being. For example, a patient’s guilt may serve a defensive purpose by denying ‘the intolerable conclusion that no one is respon- sible’ [ 161. In such cases, attempts to remove feelings of guilt may be met with anxiety [17]. A woman presented in one study convinced herself that her

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daughter had contracted leukemia from the tumors of a family pet that the mother should have had destroyed. The woman became ‘demonstrably uneasy’ when a physician tried to dissuade her from her belief [ 161.

It should be noted that whether a patient’s guilt is realistic or unrealistic, his or her feelings of guilt or shame are always real. The next section identifies several sources of such feelings and specific strategies to prevent or alleviate them.

SOURCES OF AND STRATEGIES FOR HANDLING SHAME AND GUILT

Guilt and shame may result from any one or a combination of several influ- ences. The first, what Berger has termed ‘iatrogenic guilt’, may be caused and controlled by health professionals themselves [18]. The next two sections of the paper suggest some of its sources and ways to control them. Guilt and shame may also result from influences outside of patient educators’ control (e.g. social stigmata [ 10,19,20], loss of personal independence [9,12], and reli- gious/personal values [ 111). The paper concludes with strategies for minimiz- ing the negative effects of guilt and shame from such sources.

Iatrogenic guilt Health care professionals may cause guilt by: (1) emphasizing self-care with-

out mentioning uncertainty of outcome [ 201; (2) failing to give the patient the benefit of the doubt [21]; (3) inappropriately attempting to strengthen the patient’s internal locus of control [23,24] ; and/or (4) using insensitive routines and/or failing to explain why certain questions are asked as part of routine histories [5,25].

In some instances, health care professionals may unwittingly contribute to patients’ guilt feelings by emphasizing self-care without mentioning the uncer- tainty of the outcome. For instance, Skyler, who encourages his patients to achieve the best diabetes control, notes when writing about diabetic complica- tions: ‘... we may be faced with the circumstance that despite the patient’s best efforts, chronic complications may still develop. This may cause the patient to have guilt feelings that there was something that he or she could have done to avert complications. With our present state of knowledge, this is a difficult dilemma, since we must strive for the best possible result with available therapy while not imposing unnecessary burdens either currently or in the future.’ [21].

Moreover, as Godley noted, health professionals must avoid equating ‘good control’ with absence of diabetic complications and ‘bad control’ with their presence [22]. Persons with chronic complications should not have to deal with health care professionals who deny them the benefit of the doubt, or who ‘blame the victims’ for their deteriorating medical condition [ 161.

Patient educators may possess attitudes that promote patient guilt through incomplete understanding of ‘health locus of control’ research. Many investi- gators have assumed that patients’ beliefs in themselves as responsbile for their health (referred to as an internal locus of control, or internality) should

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be strengthened. Wallston and Wallston term this position ‘naive’ [23]. An internal locus of control is not always in the better interest of patients, partic- ularly if they have no control over their illness. Consider how such an extreme stance could lead to guilt feelings: Rigid beliefs that they, and they alone, could affect their health might inappropriately prevent patients from seeking ade&uate medical attention. Wallston and Wallston note that patients with strong internal health locus of control may, in insisting that they are respon- sible for their illness, put off potential helpers (including health professionals, relatives and friends) ‘who might be all too willing to let the patient assume total responsibility and then turn around and blame the patient if and when things go wrong’ [23].

Health professionals may produce shame or guilt in patients almost from the moment their health care begins. Hospitalized patients, for example, may feel ashamed after going through a variety of what Hartmann calls ‘stripping procedures’:

loss of status, giving up of personal clothing, acceptance of institutional clothing; depersonal- ization of the surroundings; obliteration of individual differences with regard to fellow patients, exposure to the gaze of others, the feeling of being trapped, not being able to eliminate others from his perceptual field; surrender of jewelry, deposition of others (sic) valuables; having to do without makeup as a means either of self-representation or of hiding onself. [25]

As the patient bares both body and soul during the examination, he

allows the doctor to enter a zone in which he would not allow anyone else.. . .Physical disease already creates a stigma which the patient may try to conceal. He is even more sensitive when the conditions of his sickness, his experience of being sick, and his behavior as a sick person are considered. [ 251

Likewise, pointed questions about such things as regimen adherence may pro- voke shame in persons who have not kept to their routines [5]. As a result the patient may withdraw, withholding important information in order to reduce exposure to more shame [26].

Finally, health care providers can unknowingly induce guilt in patients by asking routine questions that have little or no relevance to the illness. For instance, routine questioning about past drug or alcohol use may cause the parents of a malformed newborn to believe they caused the birth defects, when that may not be so [3]. As another example, many parents feel guilty about their children’s illnesses. Health care professionals can add to that guilt merely by asking when the parents first noticed the illness. Berger notes that such a question may be a routine part of the history, but ‘for the parent it often represents an indirect accusation that they should have brought the child sooner for medical attention’ [Ml.

Preventing or minimizing iatrogenic guilt To the extent that the elements of the preceding discussion cause iatrogenic

guilt, it may be prevented or reduced if patient educators employ some com- mon-sense strategies:

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(1) Emphasize the uncertainty that accompanies self-management [21,22] Al- though patients should be encouraged to follow therapeutic regimens as best they can, they should know that they are not solely responsible for their illness, its complications, and its control. A health care professional can, for instance, tell a patient with diabetes that he or she is responsible for following his or her diet and taking the proper insulin dosage; that the health care team is responsible for follow-up screening and care; but that in spite of the best efforts of all involved, and through the fault of none, some patients, including them, may suffer diabetic complications. If complications arise, the responsi- bilities remain the same: The patient and health care team work together to treat the problems and attempt to prevent their worsening.

(2) Give patients the benefit of the doubt [22]. If trustworthy patients say they have followed the therapeutic regimen, but complications have arisen, avoid blaming the patients for their problems. Concentrate on treating the problems.

(3) Do not try to foster in patients an internal health locus of control, assum- ing that will increase their adherence to medical regimens. Wallston and Wall- ston [ 241 have found no clear relationship between compliance with a medical regimen and health locus of control. There is even evidence, for patients with terminal cancer, that an internal locus of control may be detrimental [20]. Other studies, however, have indicated that internality and a belief in power- ful others may be linked to regimen adherence [ 231. Thus, health care profes- sionals should probably promote patients’ beliefs in themselves as responsible for their own health up to a point, after which the responsibility shifts to health care professionals (the ‘powerful others’).

(4) Identify and eliminate unnecessary medical/hospital routines that can strip patients of their dignity [26,27]. For instance, ‘stripping procedures’ in hospitals should be modified so patients may wear their personal clothing and jewelry, wear makeup if it is in their normal routine, and, for extended stays, bring in their own television sets, wall hangings, and other accouterments of home [27].

(5) Explain the rationale for asking routine history questions. For example, if you routinely ask about patients’ exercise habits, but amount of exercise would not have directly affected their current medical condition, tell them so [ 18,251.

Dealing with guilt and shame from any source Patients also suffer guilt and shame from sources not under health profes-

sionals’ control. These feelings may pose a barrier to treatment and subse- quent regimen adherence, so patient educators are obligated to deal with them. Several strategies for doing so may be useful supplements to the 5 listed in the previous section. Several authors recommend directly asking patients to talk about such feelings [9,28,29]. Otherwise, however, the tactics needed for realis- tic and unrealistic guilt may be different. With realistic guilt, patients should be encouraged to acknowledge the wrong doing, motivated to make amends, and helped to take specific corrective actions [6]. Unrealistic guilt may be more complex to deal with, but may be approached through:

(1) Using professional authority to tell the patient that he or she is guiltless

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[29]. For instance, a physician or clinical specialist might be able to say, ‘I have _ years of medical training, and I know there was no way you could have prevented this.’ (2) ‘Normalizing’, or pointing out that others in the patient’s position would feel or have felt the same way [16]. A genetic coun- selor, for example, could tell a person who feels responsible for his or her baby’s birth defects that ‘most of the patients I’ve talked to felt the same way you do, but neither they nor you are to blame.’ (3) ‘Reframing’, or helping the patient change the way he or she looks at or thinks about his or her illness [28]. A patient can be encouraged to view an illness as a challenge to be overcome rather than a permanent setback, for instance. (4) Allowing, even encouraging the patient to confess any real or imagined wrongdoings [6]. (5) Referring the patient to a psychiatrist, psychologist, psychiatric nurse or so- cial worker, or pastor if the patient’s feelings of guilt and shame are detrimen- tal to his or her health or compliance with the medical regimen [28].

Abrams and Finesinger have summarized other useful approaches [lo]. They found that cancer patients’ guilt reactions were helped when health care pro- fessionals: expected self-blaming and blaming others in cancer patients; under- stood their own reactions to cancer; treated the anxiety surrounding diagnosis in each case according to the patient’s personality and needs; let the patient lead discussions of the diagnosis; used simple statements to clarify misconcep- tions; avoided overexplanation, excessive reassurance, and untruths; planned regular visits and maintained interest in the patient; and promptly made chart records of patients’ cancer-related understanding, emotional reactions to in- struction, and changes in social situation or medical managements. These recommendations appear warranted for all chronic disease caregivers.

A final note. The lists of practical strategies recommended in the preceding paragraphs are not exhaustive. Moreover, they are more complex to implement than the brief, ‘common-sense’ descriptions may make them appear. Like other professional skills, they are developed through study, observation, practice, and feedback [30]. They are presented only as an introduction or reminder, consistent with the scope and purpose of this commentary.

In conclusion, guilt and shame can interfere with therapeutic relationships and outcomes. They must, therefore, be dealt with, whatever their source. It is the beneficent patient educator’s particular responsibility to minimize ‘iatro- genie guilt’, recognizing and treating it whenever it could not be prevented. To behave otherwise would not be ethical.

ACKNOWLEDGMENT

This work was supported by NIH Grant P 60 AM 20593.

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