Thursday, August 13

Death in Venice: which way is right?

Last week, I am sorry to report, my uncle passed away. His entire family was by his side, almost all having flown in from across the U.S. Because he had all of his faculties about him, he spent his last days getting his final affairs in order – having consulted with physicians, the hospice facility and his family. He knew the end was nigh, and he wanted to make sure everything would be fine when he left. Always in control, he even sat down and chose his entire funeral arrangements, right down to the hymns and the guests.

In Italy, this same scenario plays out in an entirely different matter. Basically, your plain vanilla, denial. The terminal patient is almost always – always – kept in the dark of their diagnosis, and even darker in terms of their prognosis. They are told they have an ulcer when it’s really pancreatic cancer. Regularly scheduled chemo treatments - taking place in the radioactive part of the hospital are shrouded in a ‘don’t ask / don’t tell’ omertà. I'm surprised they don't label the corridors something like HappyLand. Sometimes, depending on the fragility of the wife or husband, the doctors don’t even come clean to them, either. I recall pleading with a physician to give me the straight talk on my 89 year old aunt’s paralyzing stroke; finally explaining that for the family, and with her extreme Altzheimers, a ‘not long to live’ would be a benefit to all concerned. He could barely choke the words out.

Talk to any Italian, and they will state adamantly that my Uncle’s scenario is unreal, unhealthy and just plain sadistic at best. They firmly believe that patients perhaps fight harder, or don’t lose faith, if not told about their illness. Talk to an American about the Italian way of leaving this earth, with no goodbyes and your forms not in order (although one might contend that dealing with the bureaucracy would be the kiss of death – imagine that – having to revoke your own ‘certificato di esistenza’); basically departing without even knowing what did you in, and they will be left wide-eyed with incredulity and horror.  I wonder if they are Last Rites, or Last Wrongs?

Studies should probably be conducted to see whose way works better.

11 comments:

Michele said...

well, I can't speak for all Italians, but I don't agree. I'm impressed by your uncle's lucid approach, but I didn't have the same experience as yours about hospitals... I don't even think that Italian doctors are "omertosi" in general. In my case, my uncle had a stroke and was in a coma for almost one year. Doctors never told my Aunt to hope for a recovery, and always spoke clearly about my uncle's conditions. My aunt even said they were too harsh.

the only thing I find unhealthy here, is not telling patients the truth about their illness... And if this happens, as Italian, I can't say it's normal: it's just stupid.

cuz liz said...

He was pretty amazing in that he was adamant about not languishing in a hospital, which was an option. How could anybody these days want themselves or their loved ones to lie in a hospital with no hope of recovery just to "spare the family" from suffering or because the family can't let go. I was suffering more knowing he was suffering and not living as he wanted. He could hardly carry on a conversation, which you know he loved.

I think "sparing the family" and the patient keeps the doctors from having to learn how to, factually and respectfully speak of the condition and the options. Very poor bedside manner. Better decisions are made when everyone knows what's going on.

We in the U.S. (perhaps other countries, too?) are such consumers of information and we are taught to question our doctors and find out more about our diagnoses and prognoses. I believe knowing all the options helps more than it hinders. We need to actively participate in our own treatment, however difficult it is. Knowing how the patient and family can participate may foster more hope.

Being clear about our final wishes helps the family focus on saying goodbye instead of all the legal crap. If you own property, set up a Living Trust; write your will; set up healthcare directives and a financial power of attorney; make your funeral arrangements. Finally, tell your family what you want before it is too late.

I am so sad Dad is gone, but I am happy he got to call the shots within the limitations of his condition.

As he would say, "Life is not fair!"

Dave514 said...

Cuz Liz:
Here here! I echo your sentiments.


Davide

HarmCo said...

My deepest sympathies on the loss of your dear uncle; thank you for the bright, clear perspectives. xo, AM

Francesca Maggi said...

Ciao Michele -- this is a FIRST - absolute FIRST -- I've ever heard of it. Almost all of my friends did not let on to their parents about their condition, and nor did their doctors...And I have a lot of friends.
But, maybe something is changing?
Grazie mille.

American in Padua said...

I would say an impressive reason why so many Italians (and doctors) do not think your uncle's end is acceptable comes from the fact that Italy is a Catholic country, and that religion believes that God decides the end. With doctors diagnosing everything, death would seem too scientific and logical instead of spiritual.
As Americans, we are dominated by a Protestant attitude which is quite different. People are much more protagonists of their own fate which that upbringing.

Francesca Maggi said...

...So, explain why the last Pope got to call his parting shots?

American in Padua said...

Francesca, what do you mean by "his parting shots"?

Francesca Maggi said...

In a country totally polarized by the euthanasia debate, our dear Pope decided against being maintained on a respirator...What's good for the goose...

American in Padua said...

Really? Where did you get that piece of hot information? So does he have a living will?

Francesca Maggi said...

Well, apart from wagging tongues...
If you followed the happenings (and I was riveted here in Rome), he was put initially on a respirator.
Later, they said they removed it, so he could communicate with his aides...and, ultimately, let God take over from there.
You do the math.
As for the living will, do you think that he would have left his affairs up to God?