Death certificates are the final period at the end of a life sentence. I've filled out more than a few over the two-plus decades I've been in practice. The hardest part of this difficult job is the last section on the form, namely 'cause of death.'
Here's exactly what the State of Colorado requests:
Immediate cause [Enter only one cause per line for (a), (b), and (c).] Do not enter mode of dying (e.g. Cardiac or Respiratory Arrest) alone.
(a)__________________________________________
Due to or as a consequence of
(b)__________________________________________
Due to or as a consequence of
(c)__________________________________________
Generally, the funeral director is standing by the front desk, deathly impatient, waiting for me to fill this form out in a moment stolen between appointments. But I find it very hard to think this out in a hurry yet essential that I give it my full attention and best shot.
I'm not sure who signed my Mom's certificate. I can't read the writing, it may be the doctor who visited her on one or two occasions. I'm not objecting to the lack of visits as I made it clear in an officious sort of way that I would mostly handle things pertaining to my mother's health care. So I guess I can scarcely be offended that whoever filled the certificate out listed "End Stage Dementia of Alzheimer's type" as the cause of death. Period. No (b)'s or (c)'s about it.
Well, Mom did not have Alzheimer's type dementia at all but rather multi-stroke dementia, and she doubtless died of a pulmonary embolus or a cardiac arrhythmia. But what she really died of was an "I've had enough" attitude due to or as a consequence of immobility, loss of independence, pain, bronchitis, and one tiny stroke too many.
I was interested, therefore, to read a column in a June issue of JAMA about the Genug Syndrome. Dr. Jennifer Soyke of Eugene, Oregon, writing in a regular JAMA feature called 'A Piece of My Mind', talks about the at-home death of one of her elderly patients. When she discussed the question of the actual cause of death with her patient's loved ones, they decided the lady had died of genug syndrome (genug is Yiddish--and German--for "Enough already!"). They did not want her life and her peaceful death summed up as a medical diagnosis. So Dr. Soyke ended up listing cause of death on the certificate as 'respiratory arrest secondary to genug syndrome.'
Now that's some kind of medical chutzpah. And speaks eloquently of a life well done.
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My Grandma, a tiny but iron-willed 86-year-old German lady, died of Genug Syndrome. After 20 years of pain from botched back surgeries, she fell and broke her hip. When she realized that she wasn't going to get her independent life back, she decided to die. It took her 5 weeks, but she did it. I understood. I miss her every day, but I am relieved that she is out of pain.
People should be able to die when they have had enough.
Great post, and love your blog.
Love, Laura
I believe this is what The Colonel truly died from. Thanks for the thought............
Hmm, a very apt and often true diagnosis, but what I want to know is did the state buy it? I can't tell you how many times I have wanted to write "superannuation" or "beats the *&%$ outta me."
Your mom will be one of the statistics that let us know the national prevalence of Alzheimers. The inaccuracies on death certificates can lead to misleading conclusions.
"Enough already!" Dying people do know when they reach this point.
Wonder if anyone ever questioned Dr. Soyke's "genug syndrome"? I think it's such an apt description.
My dad died from a broken heart or maybe it was genug. He'd had enough living without my mom. So, had a "heart attack" and died at home.
My mother-in-law died of that too, although we didn't call it that at the time. she even told my husband that she was tired "of it all".
I like the "genug syndrome" diagnosis. I have no doubt that my father-in-law will probably succumb to it not long after my mother-in-law passes on. Sad to say, I don't think he will live long without her, and she has Alzheimer's.
My Dad also died of Genug Syndrome even though his death certificate said Congestive Heart Failure. Yes, his heart failed because he'd had enough of suffering with years of periperal neuropathy pain and finally accepted that he would never again be able to go out to his garage and tinker with his truck. He'd had enough.
Laura: Tiny ladies with iron wills do seem strong enough to make anything happen, and judging from these comments, people can die when they've had enough. Always glad to hear your perspective.
His-self: Likewise, anyone who carries The Colonel as a title through life is strong enough to say enough already and mean it! Glad you stopped by from the southern suburbs.
Anon: I'd never have the guts to use it. Love the 'beats the %#@* out of me' diagnosis. The 'how the hell do I know' syndrome.
Ruth: Cause of death is more often than not an educated guess, or an on the run conjecture. Terrible way to fuel statistics.
Wendy: The survivor of a long-term marriage often doesn't last long. So hard for you to lose them both in short order.
Kenju: The hospice social worker told me those sorts of statements often mean the end is near.
MG: Your feeling is probably correct based on their relationship.
Anne: I'm so glad you've come to visit. Years of pain can sure wear a person down and take away their simple pleasures.
As the author of the JAMA "Genug Syndrome" essay, I appreciate all your comments. Reading the essay in full will answer some of your questions (JAMA, 6/11/08). Medical chutzpah, yes, but the term was truthful, and therefore correct.
I was never asked about what I wrote on the death certificate, but I was prepared to respond. It was the truth.
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