Disfigurement, Perceived or Real

An ESUN Article by Marianne Griffin RN, BA

How much of who we are is defined by what we look like? It is a commonly accepted and well known view that clothes and accessories can be considered social indicators and can potentially be manipulated and changed. However, skin and bony structures are not so easily replaced or repaired. Even small changes in bodily appearance may produce distress, anxiety, unhappiness or depression. In the area of bone and soft tissue cancers of the limbs, surgical intervention today concentrates on limb sparing and reconstructive procedures. However, something as simple as insertion of an infusa port to enable easy access for chemotherapy can trigger a negative response.

In today's society, much value is placed upon a person's appearance, beauty, and physical attractiveness. Therefore, in the context of cancer care, what are some of the emotional and practical issues related with essential surgical repair or procedures that alter appearance?

Theories of perception dictate that we both form and reinforce our own sense of self through the eyes of others. In a recent interview on the Oprah Winfrey show, Michael J Fox, a well-known actor and activist for the better understanding of Parkinson's disease, provided insights into his own particular way of gaining full value from his life, despite the involuntary movements that are the hallmark of Parkinson's disease. His own dictum of vanity has been lost, and he has ceased to worry about what others see and think. This has set him free to pursue the many other activities of daily life that give meaning and add positively to self worth and esteem.

According to Valente, altered physical difference that may or may not be immediately noticeable can often be associated with low self esteem, negative self image, social isolation and fear of rejection in relationship.¹ However it would be simplistic to place the onus of blame entirely upon surgical intervention. The sometimes unpredictable outcome can be a cause of distress.

For Galdfelter, it is the complexity of trying to convey this element of uncertainty in the preoperative consent process that may cause unrealistic expectations.² Therefore, relevant for consideration in the transfer of information from the physician/surgeon are a person's pre-existing psychological makeup, current and previous medication and substance intake, environmental factors and pre-disposing coping skills, as well as age, gender and cultural back ground. It is the transfer of information in an effective way that forms the basis of informed consent.

If the underlying basis to a successful recovery period hinges on managing expectations rather than outcomes, then the process of informed consent should be the focus of our attention. The underlying premise is that a patient must have an understanding of their current health issues as best known at the time. The treatment options that are available and the risks and benefits that will ensue with such options must be explained before any decision is taken. Therefore, it is not the signature on the piece of paper that is important, but the transference of knowledge that is paramount.²

Unrealistic expectations are wedded to ineffective communication. How are we to achieve a level of education and transfer of information that will lead to optimal, realistic expectations in relation to outcomes, when the time in a consultation is often short and the mantra of a market-driven society is productive time? Today, with improved technology, one such option is the development of web based educational tools that can enhance, but not replace, the discussion in relation to the consent process. This may be one way to add to the artillery of printed handout material as well as video information.

Such programs are currently in use and, according to Gladfelter, the combination of audio, text and visual information should be conveyed at a level that everyone can understand. Subsections that include your body, your condition, your procedure, risks and benefits, alternatives, preoperative care andpostoperative care enable essential information to be delivered in a logical and flowing manner.² Viewing such information prior to consultation allows patients and carers or family members time to formulate questions and view the information as many times as needed within the home, allowing time for discussion, absorption of material and a period of emotional adjustment. A priority must be given to exploring the notion of expected outcomes after surgery. Clarification of understanding and knowledge of what is to come, expressed in a meaningful way, helps minimise possible negative emotional turmoil in the recuperative phase.

Despite clear communication, some patients may experience anxiety and distress in the pre and immediate post operative period. This distress may be temporary; however some may experience a depressive disorder ranging from mild (considered dysthymic) through to severe with psychotic and melancholic symptoms. Valente characterises major depression as a mood disorder that is defined by sadness, loss of interest, or feelings of pleasure with a total of five symptoms over 2 weeks, i.e., fatigue, significant weight loss, insomnia, diminished concentration, thoughts of death or suicide.¹

Although the informed consent process is the responsibility of the clinician, an important role can be played by all members of the multidisciplinary team at this critical time. With heightened awareness, team members, including those in physiotherapy, occupational therapy, social work and nursing staff, even in a brief exchange, can tailor pivotal questions that give insight into patient's concerns. Questions and issues being explored endeavour to establish excessive concern and to discover if the concerns are related to the condition, if the subjective and objective concern are a mismatch, and if social avoidance is prevalent. Positive and negative responses indicate levels of coping which may lead to the need for further assessment and on referral.³

As with all people, well or unwell, people with a disfigurement, whether perceived or real, may employ a range of coping strategies such as avoidance, camouflage, escapism and distraction to gloss over feelings of grief and loss of self identity. The effort and ability to encourage people to open up and discuss such issues requires that we understand the potential impact of even minor changes in appearance, and it is essential if we are to deliver optimal patient care.