The Normalisation of Despair and Distress
An ESUN Article
The Wiktionary definition of despair is: "to give up as beyond hope or expectation." Distress has several meanings, but in medicine occurs when an individual cannot adapt to stress. If one cannot adapt to stress it may lead to despair. How then do we define distress in the context of cancer care, and why is it important?
Distress in combination with a cancer diagnosis is not a single entity (Vitek et al). It has many faces that may present themselves at any point along a person's cancer journey. Distress may have physical, emotional and social components and may range from mild to severe. The NCCN (National Comprehensive Cancer Network) guidelines have defined cancer related distress as an "unpleasant emotional experience of a psychological (cognitive, behavioural, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment."
In our everyday life we all experience distress that varies depending upon the daily demands that are placed upon us. Some of us have an expectation that we will be nothing less than capable and fearless, as is reflected in Leunig's cartoon published in a daily newspaper. Our ability to cope with distress is related to our coping skills and personality, as well as societal expectations and response to our behaviour. It is important to recognise that the distress we feel at a delay in catching public transport is different from the distress we feel about issues related to our health.
Distress therefore varies from a normal response to unresolved and unremitting severe distress that may disturb sleep function, eating patterns and general behaviour. Underlying disorders such as dementia, delirium and personality disorder, to give a few examples, may lead to distress. These conditions are classified as psychiatric illnesses and have recommended treatment pathways (Vitek et al). It is important to fully investigate any signs and symptoms of distress and to encourage patients to self report. Knowledge and education are, as always, important.
All health care services are constrained by economics and, as a generalization, are "time poor". It is imperative to open up the communication pathway for patients and to identify the nature of distress and to quantify the level of distress experienced. Ideally this must occur routinely at regular intervals so that the process is both normalised and transparent.
Patients may not be willing to open up a discussion if the concerns are emotional, perhaps due to the perceived stigma of being labelled with mental health issues (Vitek et al). Individual attitudes and beliefs held by clinicians as well as patients are a well recognised component in any communicate exchange; therefore the implementation of a standardised routine screening tool may help decrease these barriers. Many tools are available, but above all, they should be quick and easy to read and understand. Assessments should include psychological, social and physical evaluation components that use open ended, non-intrusive questions. Distress can only be effectively monitored in a multidisciplinary setting if it is documented. According to NCCN, the goal is to ensure that no patient with distress goes unrecognised and therefore untreated. Additional support may be required after further assessment. This may entail a referral to social work, psychology, psychiatric services, and pastoral care or may be of a more practical nature. At times of increased fragility, even issues like transport can become insurmountable, let alone complex family dynamics.
The skills of listening and recognising nonverbal clues can enhance the health care worker's ability to recognise when distress symptoms are elevated. However, communication is always a two-way process. Body language as well as choice and intonation of words used by clinicians and other health care workers can be unwitting deterrents to meaningful discussion.
Consistent routine protocols that allow all issues to be either followed or referred help reduce the anxiety felt when regular staff, both nursing and clinicians, are not in attendance. However, we all recognise and accept that being cared for by the same treating multidisciplinary team is optimal. It may also help patients to know what to ask for. Transparent and accessible guidelines may help reduce some of the barriers both perceived and practical.
Recognising and acknowledging distress are the important first step in alleviating as much as possible this common phenomena that, if untreated by either pharmacologic or non pharmacologic means, can be detrimental to decision making, compliance and treatment outcomes (Vitek et al).
References
Distress in Patients With Cancer: Definition, Assessment, and Suggested Interventions. Leesa Vitek MSN, CRNP, OCN, Margaret Quinn Rosenzweig, PhD, CRNP-BC, AOCNP, and Susan Stollings, PhD. Clinical Journal of Oncology Nursing. Vol 11, June 2007.
The National Comprehensive Cancer Network Guidelines. www.nccn.org
The Age Newspaper. Melbourne, Australia
V6N1 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.