Medical care is oftentimes presented with circumstances where there is more than one path to follow. At these junctions, the patient’s wishes have great significance. In a similar vein to the obligation to be healed – halacha recognizes the right of a patient to decide at these junctions what type of treatment they will receive. Halacha recognizes that “the heart knows the bitterness of the soul” and its instinct is an inseparable part of the medical discussion; at certain points in life, in states of great suffering, it allows for one to chose to leave this world passively and discontinue treatment; this is also practical  – when the patient is not interested in treatment they can potentially hurt themselves, such as by removing the PEG tube, etc. We discuss this further in the position paper “Honoring a Patient’s Wishes”.

Unfortunately, oftentimes, and especially in these cases the patient is unable to express their wishes. When dealing with situations of cognitive impairment, the inability to communicate with one’s surroundings, and the loss of decision-making capacity, etc. – the medical team is faced with a genuine obstacle, for they do not have the capability to understand what the patient wishes to be done. Turning to the family in order to make decisions is a potential option, for we assume that the family knows the patient and wants what is best for them. However, these assumptions are less reliable in complicated situations: oftentimes the family does not know the patient’s wishes; sometimes the family is biased in their decisions due to their wish to know that “we’ve done everything” and to clear their conscience; and most commonly – the concept of ‘family’ is not easily defined and a large number of family member disagree regarding the assumed wishes of the patient unable to express himself, their ethical values, and the halachic rulings to follow.

In order to address this complex reality, the world of advance directives has been extensively developed. Looking at the different options presents us with two main camps: the first involves dictating a list of medical procedures that a person wishes to be done or to opt out of. Classic examples are life-saving procedures in advanced stages of dementia, nutrition, etc. The second involves appointing one or more family members who will be certified to decide in different states what should be done. Each one of these paths has advantages and disadvantages. Appointing a family member is advantageous due to the fact that it is difficult to foresee all possible situations that will require a decision and due to the fact that decisions that seemed appropriate at the time of the advance directive may be seen differently when the time comes to rely on them. To contrast, creating a detailed advance directive offers the most precise representation of an individual’s wishes, and will grant the person exactly what they had requested. It seems that the most advisable path is to benefit from the best of both options: on one hand, appoint a person as a legal guardian who will be responsible for making decisions when necessary; on the other hand, create advance directives throughout the time of the appointment process, delineating the specific matters that are important to the patient. Guidelines for filling out these directives are found on the “Tzohar Ad 120” website.

You might be interested in:

• Should one force dental care on a parent with dementia?
• When is it proper to view a dementia patient as someone who needs decisions made for them – without their consent?
• Dementia and Jewish values – the first summit of the NGO Emda and Tzohar Rabbinical Organization