Managing Symptoms at the End of Life

AAACN Viewpoint, Jan/Feb 2004 by Russell, Sally

The following article is third in a series of reports on the End of Life Nursing Education Consortium (ELNEC), a farranging national project to educate nurses on end-of-life care.

In 1999, the American Association of Colleges of Nursing (AACN) and City of Hope National Medical Center combined efforts and launched the ELNEC program by training nursing continuing education providers. These providers were then tasked with integrating the latest information and resources about end-of-life care into continuing education activities for nurses. Sally Russell, AAACN's Education Director, attended ELNEC training programs last year and has been sharing the curriculum in this special Viewpoint series.

The ELNEC curriculum is supported by a grant from the Robert Wood Johnson Foundation to AACN and City of Hope.

One of the nine modules included in the End of Life Nursing Education Consortium (ELNEC) curriculum focuses on symptom management and addresses symptoms other than pain that are common at the end of life. In addition, the module describes assessments and interventions that can prevent or diminish these symptoms.

A cornerstone of the module is the belief that nurses must work collaboratively with physicians and providers in other disciplines to manage symptoms effectively.

To provide the full range of patient care, it is common for nurses and physicians to work with physical therapists, respiratory therapists, social workers, pharmaceutical and/or IV providers, to mention only a few.

The task of coordinating these services often falls on the nurse, who must have the ability to support the family should they become overwhelmed with both the symptoms and the number of services necessary to alleviate those symptoms.

Common Symptoms

Dyspnea

Dyspnea is defined in Mosby's Medical, Nursing, and Allied Health Dictionary (2001) as "a shortness of breath or difficulty in breathing that may be caused by certain heart conditions, strenuous exercise, or anxiety" (p. 516). Other common diseases/disorders that may cause dyspnea are stroke, end stage renal disease, and lung cancer.

This symptom can be frightening to the patient and his/her family, as many people have described suffocation as the worst way to die.

Assessment of dyspnea is subjective because it is what the patient says it is. Assessment must include how dyspnea affects the ability to function, which factors improve or worsen the perception of dyspnea, the amount of pain associated with the experience, as well as lung sounds and oxygénation levels.

Treatment would include specifics for whatever disease or disorder is causing the dyspnea, but may also include teaching of strategies such as pursed lip breathing and energy conservation techniques. Using fans or opening windows may also decrease the patient's perception of not being able to breathe along with elevating the head of the bed when possible. Relaxation and distraction methods such as music or conversation may be beneficial as well.

Cough

Many people with cancer complain of this symptom, however those with lung cancer are those most commonly affected. Coughing can be very frustrating and debilitating often causing fatigue, pain, and insomnia. Assessment must include information about factors that increase or decrease incidence, related symptoms, and whether there is associated sputum production. Treatment may include cough suppressants or expectorants along with the use of humidifiers and elevating the head of the bed.

Anorexia and Cachexia

Mosby's Medical, Nursing, and Allied Health Dictionary (2001) defines anorexia as "Lack of or loss of appetite, resulting in the inability to eat" and cachexia as "General ill health and malnutrition, marked by weakness and emaciation" (p. 94).

It has been learned that aggressive nutritional treatment does not improve quality of life and actually may cause more discomfort, which increases the difficulty for the nurse when planning care for these patients.

Assessment should include determining the amount of weight loss and whether muscle wasting has occurred; the impact on the patient's ability to function; and the patient's and family's perception on the quality of life related to this symptom.

Low albumin levels must be observed when reviewing laboratory data, as it takes 2-3 weeks for a protein deficit to be reflected in test results. Therefore, a low albumin level is a significant indicator of the severity of the anorexia and lack of protein intake. A dietary consult would be a first-line consideration when planning care for the anorexic patient, with appetite stimulants and antiemetics to relieve causes of the anorexia when necessary. Parenteral or enterai nutrition may be considered but must be weighed carefully due to cost and patient discomfort.

Constipation

Constipation is a frequent patient complaint at the end of life. Disease-related causes - as well as treatment related ones - are typical and complicate assessing and treating this symptom.

Assessment must include a history of stool frequency and use of bowel medications, current as well as prior to the disease. Abdominal and rectal assessments should be performed to rule out physiologic causes along with a review of use of over-the-counter products and herbal medicines. Stool softeners and stimulants may be required to achieve some relief along with increasing fluids and using high-fiber foods if the patient is able to tolerate them.