The New Oxford Dictionary provides the following definition of a symptom: "A physical or mental phenomenon, circumstance or change of condition arising from and accompanying a disorder and constituting evidence for it ... specifically a subjective indicator perceptible to the patient and as opposed to an objective one (compare with sign)."1 A symptom represents a clue to something more important. We often say, "That's only a symptom. The real problem is...." In our system of medicine the real problem is the disease. This choice of wording, this understanding, is unfortunate, as it devalues symptoms. Clues are interesting as long as the mystery remains unsolved. However, once solved, clues are soon forgotten. For most patients who could benefit from palliative care, the mystery, the disease, has long since been revealed. Perhaps this is one reason modern clinicians have so roundly ignored symptom management as a proper focus of medicine.
The perspective of patients is quite different. Patients do not so much have symptoms as experiences of illness.2 Mr. M., suffering with the pain of rheumatoid arthritis, would have found it ludicrous to consider his pain merely a clue to "something more important." Experientially, symptoms are inseparable from the disease. Pain is part of rheumatoid arthritis. Classic symptoms are still important in providing clues to as yet undiscovered disease processes. If we can identify a previously unknown disease, our efforts to treat the experience of illness will usually be much enhanced. However, when considering symptom management of known, chronic illnesses, what is usually more important is to understand what clues the disease process can provide us to understand and treat the symptoms, the experiences, of the patient. Understanding the nature of pain in rheumatoid arthritis aided us in devising a strategy that helped Mr. M. with his experience. Thus, in palliative care we often reverse the relationship between the disease and the symptom; the disease process becomes a clue to the symptom/experience.
Most symptoms have physical and psychic components. The physical pathophysiologic component can further be subdivided into local and central physiologies. For example, Mr. M.'s pain arose both from local processes in his joints and central processes that register pain. Optimal management requires understanding both these central and local physiologies. The following chapters on such common symptoms as pain and nausea will emphasize understanding and addressing these local and central physiologies. However, in the care of the individual patient, the totality of physical and psychic aspects of the experience must be addressed.
The psychic component of symptoms can be subdivided into affective (emotional), cognitive, and spiritual components, which are closely intertwined and integrated with the physical experience of illness. Optimal management requires some understanding of how these psychic components are integrated into the experience and adjusting care accordingly. A pain that is primarily spiritual in nature, for example, will not respond well to morphine but may respond to spiritual counseling.
How do we feel when ill - depressed, angry, scared, panicky, anxious, embarrassed, threatened, guilty, exhausted, hopeless, or sad? Affect comes in many colors. It is often tightly linked to physical experience. Mr. M.'s pain had shades of depression, resignation, and anger. Severe dyspnea associated with air-hunger, for example, can induce pure panic. Our emotional states are also greatly affected by cognitive processes. The meaning of an illness affects how we emotionally experience that illness. Dyspnea associated with jogging, for example, may mean that the person has just had a good workout and actually is enjoying life. A similar physical stimulus to a patient dying of lung cancer may mean impending death. A myriad of emotions may follow that become part of the experience of dyspnea - anger or guilt about smoking, sadness, and panic, for example. Depression, anxiety, and grief will be explored in greater depth in chapter 7.
The cognitive component of symptoms refers to the organization of the experience into a framework that is intelligible and meaningful. Cognition is not necessarily rational. A delirious patient who complains about being stabbed by devils may have an underlying physical cause for pain, such as a broken rib or other lesion. This may be interpreted cognitively as being a devil, with the affective response being terror. Cognition allows organization of a complex experience into something like a story, thus making the experience intelligible. The story has meaning: "Being stabbed by a devil means I'm in serious trouble." Thus, in trying to interpret the cognitive component, attention should be paid both to organizational structure and its implied meaning and associated affect. The organization and meaning of the experience will be shaped by previous personal and cultural experiences and beliefs as well as the mental capacity and orientation of the patient. The same delirious patient who experiences pain as a devil may have normal intelligence, but the experience is affected not only by earlier experience, such as a belief in devils, but by the patient's altered mental status.
I could never fully understand how Mr. M. experienced his pain. Clearly, more than simple physical discomfort was involved. His joint pains were interwoven with a more total pain of his experience.3,4 Pain meant more than "ouch." I imagine for Mr. M. pain meant many things - being frozen, helpless, dependent, isolated, and separated from people and things he loved, among others. Analyzing the cognitive component requires understanding both the patient's story and organization of the experience and implied meanings.
Not all symptoms are experienced with spiritual or religious overtones. It is quite possible to be constipated or scratch an itch without pondering deeper meanings. However, spirituality often plays a major role in the experience of illness, and certain symptoms simply cannot be comprehended or addressed without considering spirituality. For some the importance of religion or spirituality is obvious. "Was this illness inflicted by God or a devil? Is this a curse?" they may ask. For many, deeper levels of meaning can be considered spiritual without being overtly religious. Suffering calls upon us to make sense of our pain, to integrate our experience with our view of what makes the universe tick, and then decide how we should respond - prayer, resignation, a fighting spirit, or perhaps a quest? If we as clinicians are to make any sense of our patients' experiences, we will do so only if we get some notion of how their experiences fit into their larger life stories, which, ultimately, revolve around deeply rooted meanings and values.
So, what symptoms are we talking about? In thumbing through the index of the The Oxford Textbook of Palliative Medicine, I identified 54 different symptoms: constipation, diarrhea, peripheral edema, nausea/vomiting, pruritus/itching, dyspnea, anxiety, anorexia, sleep disorders, cough, akathisia, dysphagia, anhedonia, death rattle/secretions, depression, drooling, urinary incontinence, rectal incontinence, hiccups, flatulence, muscle spasms, confusion, memory loss, visual problems, hearing loss, dysgeusia, colic, sexual dysfunction, polyuria, polydipsia, dizziness, dyspepsia, xerostomia, dry skin, dysarthria, dysphoria, dysuria, failure to thrive, fatigue, fear, fever, hallucinations, halitosis, impotence, irritability, taste alterations, odor, mucositis, pain, panic attacks, photosensitivity, restlessness, stomatitis, and urinary frequency. (I may have missed some, and others might get different numbers depending on whether they are lumpers or splitters.) It would be impossible to cover them all in this text. However, I hope to illustrate specific points in symptom management by addressing certain common symptoms. Little explanation is needed for the inclusion of pain, the archetypical symptom and experience of suffering. A discussion of nausea and vomiting reveals the extent to which our understanding of basic pathophysiology at a receptor level has enabled us to tailor symptom management to specific receptor mechanisms. Dyspnea illustrates, perhaps better than any other symptom, the totality of experience in body, mind, and spirit that gives rise to suffering. Mouth and bowel care are unglamorous aspects of care, often overlooked by physicians, but are absolutely essential for quality of life. The discussion of bowel obstruction highlights the need for further research to link an understanding of physiology with treatment. The medical treatment of bowel obstruction is also incredibly challenging, technically. If any problem other than pain were to be the "poster child" for why we need some specialists in palliative care, it would be bowel obstruction.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.