There are now 290,000 people in the Netherlands who are affected by dementia, I heard on television. One of the ways through which one would like to escape from the collapsing brain is the advance directive. The NVVE, the Dutch Association for a Voluntary End of Life, has designed an advance directive. It seems as if it mentions all the nooks and crannies of your future misery, plus the measures to be taken or omitted by the doctor if all that misery becomes reality. Many people think that filling out this form will lead to a doctor gently ending their lives if they are in danger of sinking into dementia.
That’s not how it works. The advance directive is reminiscent of candle burning. I know what I’m talking about, I do it myself. You light a candle in the hope of appeasing Maria or Fate, so that your loved one will recover from her illness or pass her exam. The funny thing is that you know very well that it doesn’t work that way. And yet it’s reassuring, because if she doesn’t heal or still drops, then you know it’s not your fault in any case. The advance directive has a similar ritual aspect.
Extensive argumentation is not necessary
Here’s a little more explanation. First of all: you don’t need an advance directive at all as long as you can say that you want to die. The fact that you have dementia does not always mean that you can no longer express a coherent death wish. You may not be able to argue it in detail anymore, but you don’t have to. Half a word is enough for a good listener, or even a little less. A living will helps, but is not strictly necessary.
However, the advance directive is not completely meaningless. It is even indispensable if you are mentally incompetent in the later stages of dementia and when you fill it in you already decide that you would like euthanasia in the future. To do that you have to be unhappy in your dementia. And someone has to find you a doctor who is willing to perform euthanasia on a person who does not understand what is being done to him or her. That doctor is not so easy to find, but they are there.
I just said, it doesn’t work that way. I’ll tell you how it usually goes. Mrs. Jansen is 75. Her husband thinks she forgets a lot. She also has bizarre inventory management. There are thirty packs of coffee in the house, no washing-up liquid and three toilet rolls in the freezer. Alzheimer’s diagnosis. Declaration of intent completed. After two years, it is no longer possible at home. Because she is restless at night, mister no longer sleeps, he becomes grumpy, desperate and sometimes even aggressive towards her. Madam thinks it’s fine. And she thinks this is because dementia usually robs you of the ability to see how you are. She has no idea how much the disease is destroying her husband.
Nursing home admission is approaching and her son reminds her of the advance directive in which she strongly rejects the nursing home. Her response: “Do you want your mother dead?” It makes her cry. Fortunately, that quickly blows away. And she ends up in the nursing home with in her hands the document that should have prevented this.
Lighted a candle and still became deathly ill
She’s actually not that unhappy in the nursing home. Her husband and children are, and they are also angry because the lady had done everything she could not to end up in the nursing home. They find a doctor who is willing to euthanasia the incapacitated. He visits her twice and says: “Your mother is not hopelessly unhappy, sorry.” And he goes again. This is how it almost always goes and this is why there are about 40,000 Dutch people in a nursing home because of dementia, often with the advance directive that should have prevented this. Lighted a candle and still became deathly ill.
Shouldn’t we do something about this? I wouldn’t know what. This is planet earth. Dementia is one of the many things here that are definitely not well regulated. You probably know a few more.
Bert Keizer is a philosopher and physician at the Expertise Center for Euthanasia. He writes for Trouw a weekly column about care, philosophy, and the interfaces between them.