In patients with unresponsive wakefulness syndrome or who are in a vegetative state, differing opinions exist between family members and physicians related to patient awareness and hopes of recovery. These differing goals can often lead to conflicts in care, according to findings from a case series analysis published in BMC Medical Ethics.
Patients who are in a vegetative state or with unresponsive wakefulness syndrome typically pass through 3 phases: first, the acute phase, consisting of goals focused on survival and stabilization; second, the postacute phase, consisting of fewer life-threatening events; and third, the long-term care phase, represented by failure to recover but success in stabilizing the patient. Many patients who are in a vegetative state or who have unresponsive wakefulness syndrome present several ethical dilemmas to family members and physicians. Differing opinions in care can often lead to conflict between physicians and family members, which have historically resulted in court cases to facilitate either prolongation or termination of care.
In this qualitative study, researchers studied the transcripts of moral deliberations conducted for 2 patients in a Dutch nursing home who were in a vegetative state or who had unresponsive wakefulness syndrome. The transcripts were analyzed to determine the conflicts associated with caring for these patients. In both cases, physicians believed the patients were consciously unaware of their environment and their physical state and actively discussed treatment withdrawal. Conversely, parents and family members of both patients insisted that the patient was aware of their surroundings, and family members supported continuation of care in hopes of eventual recovery.
Patient A was a 41-year-old man in a vegetative state with unresponsive wakefulness syndrome who experienced cardiac arrest 10 years before. He received artificial nutrition and hydration through a feeding tube. Medical records indicated diabetes as well as pulmonary disorders. The patient had experienced multiple life-threatening illnesses and infections, including urosepsis and pneumonia.
Patient B was in a diagnosed vegetative state with unresponsive wakefulness after brain injury sustained in a traffic accident 20 years previously, at 17 years old. The patient received artificial nutrition and hydration through a feeding tube. He had several bone fractures linked to osteoporosis and epileptic seizures.
A lack of uniform opinion between healthcare professionals was noted for both patients’ cases. Some physicians reported signs of pain perception on physical touch of the patient’s hand, whereas other professionals reported no observed pain perception on administration of intramuscular injections. Some of the patients’ siblings sided with the practicing physician, arguing that the patient was unaware and unresponsive, which differed from their parents. Despite some of the family members insisting on life-sustaining treatment for the patient, the same family members reported they would have wanted life-sustaining treatments to be withdrawn if they themselves went into a vegetative state or were diagnosed with unresponsive wakefulness syndrome.
“Different visions, different expectations, and hope on recovery, deviating goals and contradictory feelings/thoughts by families and professionals in patients [in a vegetative state with unresponsive wakefulness syndrome] can lead to conflicts,” the researchers noted. “Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity [on] visions, uniformity in treatment goals and plans, and open and empathetic communication.”
They concluded, “Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making.”
Span-Sluyter CAMFH, Lavrijsen JCM, van Leeuwen E, Koopmans RTCM. Moral dilemmas and conflicts concerning patients in a vegetative state/unresponsive wakefulness syndrome: shared or non-shared decision making? A qualitative study of the professional perspective in two moral case deliberations. BMC Med Ethics. 2018;19(1):10.