Thursday, March 19, 2015

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.


  1. So much of our need to be honest about death requires that we at least discuss death. I reviewed a book a while ago that discusses death and grief so beautifully. Of course, I read it before I ever really experienced a death myself, so what did I know. But I recommended this book to everyone because it opened my eyes to how people simply don't talk about death. And how can we be honest when we won't talk about things?

    Anyway, here's the book review:

    1. Thank you so much for this, Satia - the book sounds GREAT. I left a comment there at your blog.

  2. Laura,

    I have been only sporadically on Twitter lately, but enough to have begun to wonder about your silence. I am so sorry to learn that you've lost your mother, and in such a horrible, disrespectful way.

    My husband and I have had two immediate family members who have used the Death With Dignity Act in their home state. Once, the window of time during which the patient could self-administer the medicines closed-- we suspect the doctor intentionally dragged his feet, although that may be incorrect. We kept vigil, but not for as long a time as your family endured. The other instance was well-planned, intentional, and actually a quiet, respectful, & peaceful celebration of the patient's life.

    In another death, my father's, we had the unspoken support of medical staff to increase morphine in response to his unconscious grimaces of pain. We hope that we were able to facilitate a more timely slowing and stopping of his respiratory function, but we will never know for sure.

    I feel that I have come to know death in ways that are not usually discussed. It has made me certain that each of us is owed the right to decide how our terminal illnesses will end.

    The way your mother died must be complicating your grief. I hope you are getting through your days. I am thinking of you.


  3. Oh Karen, thank you for sharing these stories... and "quiet, respectful, and peaceful" sounds like what we all need and deserve. About the morphine: I don't know if this is state by state or not, but hospice was able to give us only tiny amounts of morphine and when we ran out because my mother survived longer than they expected, it was very complicated to get the prescription refilled (doctor could not just phone it in, etc.). One of the hospice nurses was very honest in discussing with us how hard it can be to watch this happen without being allowed to do anything to help someone make their exit with dignity; I appreciated their honesty, and I am hoping maybe the gains made by hospice will provide a foundation for us to do more in the future so that we will be able to ensure that people have the right to make a choice, a choice for peace and quiet and respect, just as you said. Thank you so much for sharing your stories here.

  4. Ms. Gibbs,
    Although it is going on four years, condolences on the loss of your mother. It must have been very difficult to see her lose her will to live when she was not terminally ill. With respect to refills of a controlled substance like morphine, you are probably right. My husband was taking methylphenidate prescribed by a nurse practitioner. She could write paper prescriptions for this medication, but not write electronic prescriptions, nor call in prescriptions for it.

    It is tragic that it took your mother so long to die by voluntary starvation and that it was so painful for her. It was even more tragic, though, that she could not have found purpose and meaning in her life while using a wheelchair for mobility. Many, many people make this adjustment successfully and live fulfilling, satisfying lives for many years.

    Having said this, you are correct. Her death certificate should have listed starvation as the cause of her death, just like people who die by assisted suicide should have that listed as the cause of their death.

    Peace to your mother's memory. May God grant her eternal rest.