Cause of Death

The state of Texas has now issued a death certificate for my mother, and the certificate claims that she died of "emphysema." But that is not true: my mother did not die of emphysema; she died of the combined effects of starvation and dehydration (details here). Of course, I could just say that the certificate is just red tape, just bureaucracy, something that doesn't really matter.

But it does matter.

If we are going to have a well-informed discussion about the end of life and about death with dignity, then we need to have accurate information. And it is not accurate to say that my mother died of emphysema.

She did have emphysema, absolutely. She had suffered from emphysema for seven or eight years. But in the last days of her life she was not using any supplemental oxygen at all, and her blood oxygen level was strong. In fact, that was the real tragedy of her dying: because her heart and lungs did not fail quickly, she lived into her third week of self-imposed starvation.

Moreover, the emphysema was something she was managing pretty well. What made her give up her will to live was an undiagnosed neurological disorder. This disorder had robbed her of the use of her hands (thank goodness for the iPad; she had lost the ability to use a computer keyboard years ago) and over time this disease, whatever it was, had made it increasingly difficult for her to walk. She had taken many falls around the apartment, and she could rarely go out of the apartment, certainly not on her own. Finally, she found it hard even to stand up, and that is when she decided to stop eating. The limitations to her mobility were something she found very distressing; for her own reasons, she could not bear the idea of spending the rest of her life in a wheelchair.

She visited neurologists and other specialists, and she endured painful diagnostic tests, but there was no diagnosis in the end other than "essential tremors," a diagnosis that could not explain the extent of her disabilities — the problems with her hands, yes, but not her strange gait and inability to stand. A tentative diagnosis of Parkinson's was eventually ruled out. One of the difficulties the doctors faced was that my mother had suffered from many serious illnesses all her life (over fifty years of lupus, just to name one), so her overall health was extremely poor and had been so for many years, with unexplained collapses that had put her in the hospital on several occasions.

Yet this undiagnosed neurological disease, whatever it was, was not life-threatening, nor did it cause physical pain. Instead, it threatened the quality of her life. In the end, this disease, whatever it was, had so destroyed the quality of her life that my mother decided that it was time to die, and that is why she stopped eating.

So, my mother did not die of emphysema, no matter what the death certificate says. She died from the combined effects of starvation and dehydration, and it took seventeen days for that to happen. She was brave enough to make that hard choice and to endure its consequences, but our society was not brave enough to stand by her in that choice and help her to die with dignity.

My mother deserved better. We all deserve better. And for our society to do better, we have to be more honest. We have to be as brave as my mother was, and we have to have honest discussions about what is going to happen to us all.

Each and every one of us.

Memento mori: remember that you are too are going to die.

Be mindful of death

while you are yet strong in body.

It is a rhyming Latin proverb of the Middle Ages:

Esto memor mortis 
fueris dum corpore fortis.