Life with Chronic Illness

Most patients diagnosed with a terminal illness live with the implications and endure the associated symptoms for months to years before dying.Many studies have shown that life with a terminal illness is fraught with the presence of bio-psycho-socio-spiritual symptoms.

In one study of patients with cancer, inpatients averaged 12.5 symptoms, while outpatients averaged 9.7 symptoms (Portenoy).

Common Symptoms at the End-of-Life

Symptom Domain

Symptoms

Physical Symptoms

Pain
Dyspnea
Nausea
Vomiting
Pruritis
Anorexia
Fatigue
Constipation
Iatrogenic symptoms

Psychological Symptoms

Depression
Grief
Anxiety
Panic
Post traumatic stress syndrome
Agitation

Social Symptoms

Isolation/loneliness
Anger/hostility
Financial issues and challenges (Institute of MedicineĀ ; Covinsky )
Fear of being a burden to loved ones (Institute of Medicine)

Spiritual Symptoms

Loss of meaning
Angst
Sources:Saunders DC. Principles of symptom control in terminal care. Med Clin North Am. 1982;66:1169-1183.Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999;281:163-168.

Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid care givers and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341:956-963.

Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med. 2000;132:451-459.

Weiss SC, Emanuel LL, Fairclough DL, Emanuel EJ. Understanding the experience of pain in terminally ill patients. Lancet. 2001;357:1311-1315.

Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284:2476-2482)

Social Implications of Living with Chronic Illnesses

As illnesses progresses, not only do patients have to endure many distressing symptoms, they also experience diminished functionality and social isolation. Most become dependent on care provided by close family members. Many patients feel that they are burdening their loved ones and this leads to secondary feelings of depression, anxiety and grief.

Caregivers in turn experience increased stress secondary to provision of care and this then results in physical exhaustion, care-giver stress, depression, anger, and social isolation.

 

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