Legal Commentary on Incompetent Patient with Myotonic Dystrophy

This patient has not made an advance care plan or appointed a substitute decision-maker (donee) for healthcare under the Mental Capacity Act (Cap 177A, 2010 Rev Ed Sing.) (MCA). It is irrelevant whether she made an advance medical directive pursuant to the Advance Medical Directive Act because she is not suffering from a terminal illness and at imminent death (Cap 4A, 1997 Rev Ed Sing.). Making future healthcare decisions on the patient’s behalf will now become more difficult because no one knows what her care or treatment preferences are, and the doctor has indicated she is unlikely to regain capacity.

The MCA provides a framework, using the best interests test, for making decisions on behalf of persons who lack mental capacity (section 6 MCA). The question is whether the tracheotomy, which is medically indicated, is a treatment that is in the patient’s best interests. The final decision-maker is the doctor because the tracheotomy is life-sustaining treatment, or treatment to prevent a serious deterioration in the patient’s health. The MCA does not specifically say that the doctor is the final decision-maker in these circumstances, rather it states that the donee appointed as a healthcare proxy cannot make those types of healthcare decisions (section 13(8) MCA).

The best interests test requires a holistic appraisal of the person, taking into account relevant medical and non-medical factors such as the person’s past or present wishes, her belief and culture, and the views of family members. A medically indicated treatment is not by default a treatment in the patient’s best interests. Based on the information in the case study, the doctor will have to weigh up the benefits and burdens of treatment, in the light of these various factors, in coming to a decision.

One of the factors the doctor must consider is the patient’s past and present wishes, especially if they were written down. She told the doctor eight years ago that she could live on a tracheotomy when she suffered pneumonia. However, a few months ago, she told the doctor she did not want to die when her oral intake was low. Subsequently, she told the doctor she was too tired to live when she underwent a painful operation to administer the central venous access port device. These few statements are likely to be expressions of how she felt at the time she made the statement, rather than her considered healthcare preferences. The fact that she has not expressed a consistent view also indicates that these statements are more likely to reflect what she was feeling at the particular time.

The lack of consensus amongst family members about what to do for the patient makes the decision-making process more difficult for the doctor. There is no information in the case study about the patient’s beliefs and values, but the doctor can ascertain what those are in conversations with her family members. The doctor should also consider the views of the patient’s family members. Here, the patient’s son is against treatment that does not help his mother regain consciousness. The patient’s daughter says she cannot make a decision, and the husband does not have a strong opinion on what should be done.

The husband mentioned earlier that the family needs the patient’s disability pension to pay the mortgage and so he wanted his wife to live for as long as possible. The question is whether this consideration should be a factor in deciding the patient’s treatment. On the one hand, it would seem morally reprehensible to keep the patient alive just to continue receiving these disability payments to service the mortgage. On the other hand, if the patient was able to express her opinion, she may well decide to continue with life-sustaining treatment to stay alive to ensure that her family is not burdened by the mortgage. The difficulty here is that we do not know what her wishes are, and treatment decisions must be taken in the patient’s best interests, rather than the best interests of her family...