Competent Refusal of Nursing Care
- Competent Refusal of Nursing Care
Ms. Winnow is a fifty-year-old morbidly obese Hawaiian woman with a history of diabetes, hypotension, and chronic atrial fibrillation. She was recently hospitalized with acute kidney failure as a side effect of being treated with the antibiotic gentamicin, and has developed large skin ulcerations resulting in unrelieved pain. For the five years prior to this hospitalization, she lived in a skilled nursing facility where she became increasingly immobile and gained 150 pounds. Five people are now needed to safely turn her, clean her, and perform wound care.
Moving Ms. Winnow for any reason elicits screams, cries, and pleas to let her die. Numerous strategies to manage her pain have mitigated, but not eliminated, her discomfort. She experiences some relief with her patient-controlled analgesic pump when at rest, although she still complains of general pain and discomfort. Even large doses of narcotics prior to turning do little to provide comfort. Other strategies to reduce the need to turn her—such as using a rectal tube to minimize fecal incontinence or special beds to reduce pressure—have also been ineffective. After agreeing to several rounds of hemodialysis, her kidney failure has begun to resolve, so her physician team decides that she can return to a skilled nursing facility. However, the social worker cannot locate any facility that will admit her because of the high staffing needs associated with her care.
Ms. Winnow now says she has had enough. She adamantly refuses to be turned or to accept wound care. Her refusal has prompted an ethics consultation and is causing increasing distress among the nursing staff. Some nurses feel that her refusal should be honored just as a refusal of medical therapy would be. Others feel that they would be abandoning her to die in a swamp of feces if they give in to her pleas. Everyone agrees that Ms. Winnow's choices subject other patients, visitors, and the staff to an unpleasant atmosphere.
How should we respond?
- Commentary
The nurses who want to honor Ms. Winnow's refusal rely on ethical and legal precedents that permit competent patients to refuse medical treatments such as ventilators, blood products, and feeding tubes. If a patient can refuse a ventilator, she can certainly refuse wound care. After all, overriding Ms. Winnow's refusal would mean that nurses would assault the patient "for her own good" through screams of pain—cold comfort for both patient and nurse.
Yet a mere appeal to autonomy oversimplifies the situation because it overlooks several important and little-discussed aspects of the case: the social taboo of her refusal, the moral distress of her nurses, and the legitimate consideration of whether nurses and fellow patients should be subjected to the stench and unsanitary conditions created by a growing pool of feces.
The reality is that Ms. Winnow's refusal is not idiosyncratic or hysterical, but is due to excruciating pain. This burden must be weighed against the imposition on surrounding patients and staff (especially nurses) of tolerating a fetid odor and of feeling impotent when they know they could help. On further reflection, it is not the stench itself that is the problem—nurses tolerate foul odors from gastrointestinal bleeds and vomited Mucomyst without protestation. In addition, we rarely impose pain on someone for the benefit of others. What makes this case different is that Ms. Winnow violates a social taboo. To accept Ms. Winnow's refusal at face value means that she may be ostracized and abandoned by medical practitioners, family, and strangers, thereby compounding her vulnerability. Who will care for the woman drowning in excrement? As anthropologist Mary Douglas suggests, by complying with her request, patient and nurse step from a world of hygienic purity to one of danger. Those nurses who want to provide nursing care over her objection may be protesting this social violation more than the treatment decision. Also, any nurse caring for Ms. Winnow will experience moral distress either from honoring her treatment refusal or from participating in what feels like assault and battery. Neither respecting her autonomy nor helping her "for her own good" seems respectful of...
