|
|
Suffering, Loss of Control, and Quality of Life
Cancer pain may resolve with the patient's cure or continue indefinitely as a complication of otherwise curative therapy. Although cancer pain is often thought of as a crisis that emerges in advanced stages of disease, it may occur for many reasons and cause suffering, loss of control, and impaired quality of life throughout the patient's course of care, even for the patient whose condition is stable and whose life expectancy is long. Suffering denotes an extended sense of threat to self-image and life, a perceived lack of options for coping with symptoms or problems caused by cancer, a sense of personal loss, and a lack of a basis for hope. "Suffering can include physical pain but is by no means limited to it.... Most generally, suffering can be defined as the state of severe distress associated with events that threaten the intactness of the person.... The suffering of patients with terminal cancer can often be relieved by demonstrating that their pain truly can be controlled."81
Pain can exacerbate individual suffering by worsening helplessness, anxiety, and depression. Shock and disbelief, followed by symptoms of anxiety and depression (irritability and disruption of appetite and sleep, inability to concentrate or carry out usual activities) are common when people first learn they have cancer or discover that treatment has failed or disease has recurred.298 These symptoms usually resolve within a few weeks with support from family and caregivers, although medication to promote sleep and reduce anxiety may be necessary in crisis periods. "The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick."81
Note: The obligation to alleviate suffering is an essential component of the clinician's broader ethical duties to benefit and not harm; it dictates that health professionals maintain clinical expertise and knowledge in the management of pain, even when present educational programs do not provide this.79 195
Personal control refers to an individual's ability to shape immediate and long-range circumstances through one's own actions,489 including: (1) predicting events and outcomes successfully, (2) exercising choice among options for action, (3) maintaining a repertoire of coping skills, (4) accessing and using relevant information, and (5) accessing and using social or other forms of support.
Personal control is undermined when cancer is diagnosed and is further reduced by ongoing pain, invasive or undignified procedures, treatment toxicities, hospitalization, and surgery. When pain reduces patients' options to exercise control, it diminishes psychological well-being and makes them feel helpless and vulnerable. Therefore, clinicians should support active patient involvement in effective and practical methods to manage pain.
The quality of life of cancer patients with pain is significantly worse than that of cancer patients without pain.145 Table 1 depicts the effect of pain in four quality-of-life domains--physical, psychological, spiritual, and social.
Family and loved ones of cancer patients share the suffering, loss of control, and impaired quality of life and also experience psychological and social stresses. Family caregivers need sleep and respite from the burdens of caregiving and may have socioeconomic needs and fears related to the costs of providing care.
Even in the absence of psychological, emotional, and physical stressors, the family may feel unprepared to deal with the patient's many needs. They often have to assess pain, make decisions about the amount and type of medication, and determine when the dose of medication is to be given. Sophisticated pain management strategies may require them to manage complex medication regimens, involving parenteral or epidural infusions in the home.
Some family caregivers may hesitate to give adequate doses of pain medicines out of fear that the patient will become addicted or tolerant or develop respiratory depression.145 Clinicians should reassure patients and families that most pain can be relieved safely and effectively. Family caregivers may feel unprepared to deal with a patients need for pain relief or may deny that the patient is in pain to avoid facing the possibility that the disease is progressing. These situations require ongoing discussions among patients, family caregivers, and experienced health care providers about pain management goals.
Go to the Pain in Patients with HIV/AIDS Menu
Go to the HIVpositive.us Main Menu
74