Question

Frequently, chronic conditions and disability are treated the same. Still, many people that have disabilities don't have symptoms or illnesses that require healthcare interventions. In many cases, persons with disability often are treated as if they are sick. What kind of ethical issues might arise when persons with a chronic condition are treated as if they have a disability, and not an illness or clinical symptom?

Answer 1

ANSWER:

Chronic illness is a distinctive experience, and chronic care is different in nature from the acute care.

Chronic diseases compromise the life of the sufferer, encumber their families, and exert intractable burdens on the health-care system. With the aging of the population, such conditions have become the primary determinants of morbidity and mortality and the leading cause of disability in our society. Despite the serious challenges they impose, the ethical discourse engendered by them has lagged behind that of acute care medicine. Of particular relevance are the challenges to individual autonomy, as the dilemmas arising in the chronic care setting have not only medical but personal and societal dimensions, may require the input of multiple participants, and resolve over longer periods of time.

The major ethical issues which should be addressed are:

1. Autonomy

Autonomy, literally “self-rule,” is a bedrock principle of biomedical ethics. It emphasizes the respect for a person to make self-directed, independent personal choices. Two conditions are viewed as essential for the demonstration of autonomous decision-making: liberty or the independence from external controlling influences and agency, the capacity for intentional action. Thus, an autonomous individual acts freely and in accordance with a self-chosen plan.

2. Burden on families

While difficult to define in modern society, the concept of family connotes various forces that bind individuals. Marriage, kinship, and other forms of relationships premised on sustained caring and affection create unique connections between individuals. The enduring and deeply meaningful relationships that arise in such circumstances constitute a familiar and distinct social universe with its own expectations, rules, and conventions. Regardless of how one conceptualizes it, family life and the sense of obligation family members have to one another may be severely challenged by chronic disease

Chronic disease places substantial burdens on family members due to the need to provide constant care. As in the case of patients with a chronic rheumatic disease, family members, particularly women, often are relied upon for assistance with many of the activities of daily life.

The help that people with chronic diseases require goes beyond the patients’ medical needs and includes a range of functions such as cleaning, cooking, shopping, help with dressing, toileting, and the provision of transportation. As a result of such responsibilities, hardships of an emotional, psychological, and financial nature may be incurred and, due to their chronicity, may become overwhelming for the caregivers, straining the solidarity and cohesion of the family unit. Many family caregivers find personal meaning in these responsibilities.

3. Do-Not-Resuscitate (DNR) Order

Physicians have the obligation to clarify patients' wishes concerning resuscitation, but there are numerous problems in communication and implementation of the DNR order. The lack of focus on goals of care, poor medical training in communication, residual uncertainties about the success rate of DNR, and misinterpretation of futility all contribute to these difficulties.

Cardiopulmonary resuscitation was originally developed as a closed-chest massage for victims of sudden cardiac or respiratory arrest. Survival is related to the underlying illness; it is almost never successful in patients with chronic debilitating illnesses.

4. Sedation

Good palliative medicine can alleviate the suffering caused by pain and other symptoms in most cases When suffering cannot be managed at the end of life, sedation is an option. Sedation at the end of life may be controversial, however, and possibly unacceptable to some patients, families, and healthcare providers.

THANK YOU.