When is it Proper to View a Dementia Patient as Someone Who Needs Decisions Made for Them – Without Their Consent?

Rabbi Yuval Cherlow

When the symptoms of dementia begin to appear, how do we determine when we should be making decisions for them?

The appearance of symptoms that bring to light the possibility that the family member is developing dementia immediately brings with it ethical questions regarding taking the person’s capacity and responsibility to make decisions and transferring it to the family. There are obviously legal aspects to this question, however in general the family begins to deal with the notion long before the time when the law will begin to enforce this. The dilemma is great: on the one hand we are faced with the great respect that we have for this person and the desire for them to live their life as they wish. On the other hand, the thought that this is the right thing to do in this situation is ever present. 

When we deal with the discussion surrounding changing the approach towards a family member who begins to express symptoms of dementia, we can glean insights into the moral approach from many different halachic sources, and specifically monetary law. The most basic principle in cases of financial doubt is “the burden of proof is on the one taking from his friend” (המוציא מחבירו עליו הראיה) – in other words: our starting point has been determined, the assumption being that one who holds a certain property is also the owner. This is not a definitive factual claim, for one is able to modify it, and the starting point is not necessarily the destination; it is possible the one holding the property is a robber or a caretaker who refuses his obligations to return the property, etc. However, the burden of proof is on ‘the one taking’. And thus, if he is able to bring proper evidence for his claim – the property will be transferred to him. 

The starting point for how we view people is based on their autonomy, their rights, and their responsibility to make decisions independently and determine for themselves how to live their life. Not only this, but in medical domains halacha recognizes this principle even when his opinion is in direct contradiction with the opinion of experts: “Rabbi Yannai says: a sick person who says that he needs (=to eat on Yom Kippur) and the doctor says they do not need – we listen to the sick person. What is the reason? – his heart knows the bitterness of his soul…” (Yoma 83a). This understanding is derived from the factual assumption that a person seemingly knows better than others what they are going through, and the legal assumption is that they are responsible for themselves. 

Is this always true? As stated earlier, our starting point is not necessarily a destination. There is much evidence that a person could be slowly losing their mental capacity. Experts who deal with dementia have delineated some of the symptoms, such as confusion in time and space, difficulty orienting oneself, brain fog when performing complex tasks, etc. However, these are still not reason enough to justify negating the autonomic status of a person. They obligate paying attention to their behavior and examining three components: first, how prominent are the symptoms and do they justify the examination when dealing with decision making? Second, how much are the issues on the table endangering the patient’s life and those around them? i.e., one must differentiate between letting them drive versus preventing them from leaving the house alone. Third, how much can one utilize alternative pathways that allow free choice with less risk?

The principle is, thus, to try and continue their life as much as possible, even at a small cost, relating to them as an independent individual with decision-making capacity. Slowly the boundaries widen, initially only in the domains where there is danger and based on the prominence of the symptoms. As one loses the ability to modify their life and preserve their freedom in other ways – so too the restrictions expand. 

And even here, the principle of human dignity is always in the background, and no less – respect for elders, in line with the biblical mitzvah “in front of a wise person you shall rise”. Honor is required specifically in situations where the behavior becomes undignified, intolerable, and at times harmful. This is the greatest test of the one’s surrounding a dementia patient, situated in a reality of which they have little control over and requiring careful action with pleasance, compassion, and moral dignity.

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