Should People Know about Terminal Diagnoses?

In the USSR, there existed a tradition of not telling people about their terminal diagnoses. I always thought this was wrong because people deserve to know the truth about themselves, all that crap.

But now I’m thinking about my friend who died two weeks ago. What did she gain from knowing her diagnosis for 4 years? She’d been a happy person the day before she was told. It’s not a way of speaking. She was incandescently happy about her life.

And the day after the diagnosis, she was just as sick but now her life was effectively over. All she could think about was the diagnosis. What was the point of stealing those remaining years from her? Or having her undergo an extremely painful back surgery when she had 3 months left to live and the surgery wasn’t going to do anything to reduce the tumors?

What was the point of all this? She had barely any symptoms and no pain except for what was caused by these useless treatments. And any months or years she gained because of the treatments, she was so miserable that it wasn’t really life. Which is what she said, so it’s not my assumption.

And if we accept that a mental state has an impact on one’s physical state, how does it help to make a person severely depressed? I honestly can’t imagine that it helped her fight cancer to sit and brood about the injustice of it all.

I honestly don’t know what the answer is. What do you think?

Advertisements

25 thoughts on “Should People Know about Terminal Diagnoses?”

  1. I think I would want to know so that my husband and children wouldn’t suffer from both the loss of their mom/spouse and the shock of losing me. When people die out of the blue, I find that a lot more painful.

    Like

      1. I think my family wouldn’t be able to keep it from me. They’re already clingy and worshipful; there’s no way that the thought of an impending loss would make them less so. I would simply get angry and demand space, and they would cry and confess that they were just so freaked out about losing me. I know this sounds arrogant and/or narcissistic, but that’s the truth about how things run in my house. 🤷🏻‍♀️

        Like

  2. ” What did she gain from knowing her diagnosis for 4 years? ”

    There’s no one-size-fits-all answer of course…
    I think most people would want to know, but a lot depends on how they’re told. There’s a big difference between ‘you have a dangerous disease, let’s monitor the symptoms and course’ vs. ‘you have a disease that will kill you 100% in X number of months’
    Of course lots of free therapy should be available to those getting serious diagnoses but even then… it’s not clear that everyone will take advantage of that (or that it will help).
    I’ve also heard of cases where medical personnel were maintaining the “We’re gonna beat this!” facade long after it was apparent to the patient that that was not the case and rather than facilitate a peaceful transition it was useless and unwanted heroic procedures to the very end.

    Like

  3. I know I personally would rather know. It would cause me more anxiety to not have a diagnosis, and I would be furious to find out that my family knew but I didn’t. That in particular is a breach of HIPAA. If I knew, if I controlled that information, it would make it easier for me to make arrangements for my friends and family and help them through that transition, as well.

    Unfortunately it often depends a lot on how the doctors and nurses treat it — this can often inform how friends and family treat it, which can cause problems. There have been studies done that show the “we can beat it” positivity is actually a lot more damaging than a more serious and sympathetic approach. There can be a sense of “if we can win, we can also lose,” which can cause issues if a chronic illness becomes terminal because there’s a pervading sense of failure in that sort of prognosis. Patient advocates are especially important in these situations — there is no reason she should felt she had to accept unnecessary or futile treatment.

    Like

  4. I hate to have intimate knowledge about such a situation, but so it goes. My mother passed away last month. The doctors had told my family that the cancer had spread and she didn’t have more than a few months left. They didn’t tell my mom, which I wasn’t happy about. But when I saw how miserable she was already, I felt that if she found out she’d refuse all treatment, even maintenance chemo. That’s just how she was.

    But she knew. She knew her body better than any test would reveal. Towards the end, she became very sad, which troubled us a lot. But my dad said something that helped. He said you’re losing your mother, I’m losing my wife, her sisters are losing their sisters, her friends a friend, and so on. And we’re all in tremendous pain. But she’s losing us all in one go. In her mind she’s grieving not for herself, but for everybody she’s ever known. Imagine how much that pain would be. And it’s fine. It’s just sadness, which is as human as anything else.

    So yeah, it depends. A strong argument for telling is to give the dying person time to grieve themselves. Which is important.

    Like

      1. Thanks. I still read the blog but have lost all the drive to post. Thought this would be the right topic to inform other readers.

        Like

    1. I’m so sorry, my friend, I really am. It’s an unbearable loss. A friend of mine died of cancer two weeks ago, and even though we’d known about the diagnosis for years, it was still unexpected. I keep catching myself storing little anecdotes I’m planning to share with her. It’s still not sinking in.

      I’m so sorry you are going through this.

      Like

      1. Thanks. It was unbearable. I thought I was going to die. Going through all the rituals related to the funeral has helped. If I hadn’t participated in those rituals, I don’t know how I could’ve processed anything. It would be like walking around with a gaping unhealable wound, forever.

        Sorry to hear about your friend. I did read your posts about her when it happened, but just couldn’t bring myself to write anything.

        Like

        1. I find that it also helps to make yourself talk to people. Even if you just want to be alone. Being around people helps.

          For me, it’s also cooking. I’ve cooked like I’m feeding an army in the past two weeks.

          Unfortunately, grief just won’t agree to be sped along. 😦

          Like

          1. \ I find that it also helps to make yourself talk to people. Even if you just want to be alone. Being around people helps.

            In Judaism, the first week after death a person sits ‘shivah’ in deep mourning in his home, but it doesn’t mean the mourning family is left alone. Everybody visits and sits with them: friends, relatives, coworkers.

            Like

    2. I’m so sorry to hear you’ve lost your mother, Stringer Bell. Cancer is a beast.

      In my great-aunt’s case, she knew and she did her best to hide it from almost everyone she knew. The only reason she let me know is because it was terminal. She hid her other two bouts from me; I guess she thought I was too young? She hid them from all of her friends. She absolutely hated losing control though and would’ve never forgiven her sons if they had hidden it from her.

      In my grandmother’s case, nobody would’ve been able to hide her ESRD from her, least of all my grandfather. As it was, she was ready to go before the family was ready to let her go.

      Like

      1. Revealing this kind of diagnoses to people is part of capitalist societies. Less capitalist societies don’t do this with the brutality that developed capitalist societies do.

        Even if we just look at the responses here, the need to know is based on 1) division of labor b) finance and inheritance and c) consumerism.

        It’s not good or bad, it just is.

        Like

  5. Sorry for your loss, SB.

    Wondered and asked others here why you disappeared before.

    My grandmother was told she had a year to live when she was dying from cancer, and she lived exactly that. Don’t know whether it at least partly wasn’t a self-fulfilling prophecy, so see the point in not telling like that too. 😦

    In Judaism and according to Israeli laws, we sit in mourning for one week after a first degree relative dies. People don’t go to work, and religious people don’t exit the house at all, I think. After that, for a year after the loss a religious person won’t visit weddings and follow other limitations. So, religion acknowledges prolonged mourning as normal.

    Like

  6. Yes, they should know. If we must generalize, if we must make a rule for all cases – yes, they should. The basic reason is: so that they can make informed decisions.

    If you really are going to die soon, that is an important fact about your life and you deserve to know it. You may wish to put your affairs in order, investigate cryonic suspension or reincarnation, do certain things that you will never get a chance to do again.

    I cannot find the text, but the chapter on death in Celia Green’s “Advice to Clever Children” addresses this topic.

    Like

    1. Exactly. If I had a terminal diagnosis, I’d try to go to some places I’ve always wanted to see (assuming I still felt well enough to travel). I’d try to see non-local friends. So I would want to know, but I completely understand your point that knowing effectively ruined the remaining years of your friend’s life. There isn’t a single right approach that works for everyone – some people would be better off knowing, and some wouldn’t.

      I’m so sorry about your losses, Stringer Bell and Clarissa.

      Like

  7. Quality-of-life—should be #1 priority
    …unfortunately at the bottom of the “priority list” of most societies. The “system” and its sanctimonious faux-morality rituals and beliefs seem to be “top banana” for them.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.