restricted access What Should Families Consider when Deciding for an Incompetent Patient?
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What Should Families Consider when Deciding for an Incompetent Patient?

The patient is a 63-year-old female. She was diagnosed with myotonic dystrophy when she was in her thirties. Two weeks ago, there was minor trouble with her central venous access port device, which was administered about a month earlier. Two days after the removal of the tube, the patient suffered a sudden cardiopulmonary arrest (the real cause of the arrest was unknown). While she was successfully resuscitated soon afterwards, the patient has remained unconscious until now.

During the process of resuscitation, tracheal intubation was conducted, but the use of intubation to provide artificial respiration for an extended period incurs the risk of serious, sometimes fatal, infections. Hence, it is medically indicated that a tracheotomy be performed on the patient sooner or later. At the same time, given that epileptiform patterns were detected in her EEG after resuscitation and have persisted since then, there seemed to be little chance of the patient recovering consciousness. Thus the medical staff faced the moral question of whether to perform a tracheotomy, and consulted the hospital’s ethics committee.

The patient’s current wish is unknown. She once expressed her desire to live with a tracheotomy when she suffered from pneumonia eight years ago, when a tracheotomy procedure was in fact conducted later. Two months ago, she also stated “I do not want to die” when the physician mentioned the risk of death due to recent decrease in the amount of oral intake. Later, however, the patient also said “I am too tired to live” after a painful operation to administer the central venous access port device.

The patient is married and has three children. Her husband does not have a strong opinion, but his thoughts are influenced by the physician’s manner [End Page 147] of explanations and apparently vacillates. He once said that he does not want invasive treatments done to her if there is no prospect of her regaining consciousness. Their oldest son, who does not live with the patient, is also of the opinion that she should not receive any treatment that does not help her recover consciousness. The patient’s daughter says she cannot make the decision. Their younger son suffers from congenital myotonic dystrophy and is mentally disabled. The attending physician also remembers that prior to the cardiopulmonary arrest, the husband mentioned that the family needs the patient’s disability pension to pay for their mortgage and hence he desired that the patient live as long as possible. [End Page 148]

Takahiro Nakayama

Takahiro NAKAYAMA is Vice Manager in the Department of Neurology at Yokohama Rosai Hospital. Dr. Nakyama works for the diagnosis and treatment of neurological patients, and his research interests lie in the MRI and CT study for neurological patients, including patients with muscular dystrophies.

Hitoshi Arima

Hitoshi ARIMA is Associate Professor of Moral Philosophy and Applied Ethics at Yokohama City University Graduate School of Urban Social and Cultural Studies, Yokohama, Japan. He is also a member of the ethics committee of Yokohama Rosai Hospital, Yokohama, Japan. Dr. Arima has published in the fields of applied ethics and meta-ethics. His research interests in bioethics include ethics of killing, post-humous interest, and other end-of-life related issues. His recent publications include a book (co-authored with Shin’ya Tateiwa) entitled Discussions and Practices of Life and Death, Vol. 1 (Seikatsu Shoin, 2012, in Japanese).