Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 3.2 Define Pain

Severe, unrelieved pain takes a terrible toll on a patient's physical and emotional well-being, compromises his or her quality of life, and can become very stressful for the family and loved ones. In a society that tends to equate suffering with strength - professional ballplayers may be the worst role models for this attitude - admitting to being in pain can be seen as a weakness. Patients and families have their own ideas about pain and their own reasons for not wanting to talk about it. Some fear, for instance, that worsening pain means worsening disease. A useful rule of thumb is that pain is whatever a patient says it is.

Breakthrough Series teams, and pain experts around the country, know that one step in the improvement cycle is to get doctors and nurses to talk to patients about pain. These conversations help patients realize the importance of reporting when they are in pain, understand different treatments for pain, and expect that pain will be relieved. These conversations can comfort patients and families, letting them know that their final months or hours need not be overwhelmed by pain.

Patients may not fully understand how pain can affect all aspects of daily life. Posting the accompanying list in waiting areas or in examination rooms can help them pinpoint their problems and symptoms and may prompt them to ask clinicians for help.

Some patients have trouble rating pain on a 0-to-10 scale. Clinicians can overcome this difficulty by providing patients with a frame of reference. Explain that a 0 or a 1 means no pain. A 3 means a patient might be able to watch an hour of a favorite television show or read a newspaper without paying much attention to being in pain. A 5 means that a patient might be able to watch part of a show or glance at a magazine but is too distracted by pain to find much pleasure in any activities. Any score over a 5 means that a patient is on the verge of being - or is already - consumed by pain and that the pain intensity is creating a medical crisis. Explain to patients that waiting until pain is severe and intense before mentioning it to a doctor or nurse is like waiting until a fever is 106 before calling the doctor. Such a delay can make it even more difficult to control a patient's pain - but it is a mistake many patients and providers make.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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