People who work in end-of-life care feel pretty strongly about telling people the truth. If someone is dying and they want to know, then they damn well deserve to be told.
Why? Because wrapping up a life requires time to tie up the practical details, deliver final messages, bid farewells, and savor all the myriad “last times:”
Last birthday or bike ride, vacation or dance.
Last scent of fresh rain.
Last kiss of a beloved.
These moments are essential. Validating. Sacred. They’re like rare, sparkling jewels scattered through a gathering dusk, and their aching sweetness is life multiplying itself a thousandfold as it picks up speed.
Yes, definitely–receiving the news that we’re going to die is a blow like no other, and trust me, delivering the message sucks, too. But the alternative…to strip a person of their opportunity to gaze around in final wonder, to direct them instead to keep their head down and keep running, running, running on some exhausting, futile wheel of cure-seeking or worse, allowing them to die bewildered, panicked, or lost…is to strip them of life’s final and greatest miracle.
Now. Having said all that, there’s one situation where it’s advisable not to inform someone they’re dying, even if they say they want to know. It’s when they’re suffering from short term memory loss. Whether the damage sources from dementia, brain injury, alcoholism, or pharmaceutical side-effect doesn’t really matter. The effect is still the same. Each time they hear it, it’s like hearing it for the first time all over again.
Personally, I think people in this situation should still be told initially, even though they’ll probably forget. But telling them repeatedly would be kind of cruel.
Nobody needs that.
copyright Dia Osborn 2011
(The graphic above is by scottchan and, like many of the photos I use here, I found it on the terrific open source website: FreeDigitalPhotos.net.)
I hope in your book…that you tell some of the stories of when you told someone they were going to die. I can only imagine how imtimate, vulnerable and honest it must have been. And with how you write, it will be like actually being there. And with most stories, it will be a great teaching tool…much like your post today.
I have a lot to say on this one but am just too damm tired=will catch up
Dia, I can only speak from personal perspective. When my daughter died, she knew for herself before I told her and was far more grown up about it than I ever was. We were always totally honest with her and her brothers about what was happening, ‘though for the young ones we couched it in terms that they could cope with – again somethin C herself was far better at than us.
As far as the memory loss is concerned, I can only say this. I have brain trauma related illness which mean that I have no residual memory of current events (I’m getting there with longer term bits and bobs thanks to ‘blog’ therapy). I don’t remember marrying, the births of my children or C’s death – I have written records of it to draw upon but that’s a far different thing. Sometimes, I am told something that I’ve been told many times before but it just slides away and doesn’t stick. Yes, every time I’m repeatedly reminded of something sad it does bring a deluge of new emotion as if it is happening for the first time, but that is more troubling and traumatic for those who witness it than it is for me.I have no knowledge that I’m feeling it for the first time and I’m always glad that someone took the time to tell me…don’t know ehether that helps or not.
That helps a lot, Elizabeth. Thank you SO much for taking the time to explain what it’s like from your side. The people I worked with all had a level of memory loss more severe than it sounds like you have and, in each of those cases, the consensus of family and staff was that once was enough. But reading your comment I realized I took those experiences and turned them into a sweeping generalization covering everyone, everywhere–silly me. And I don’t even like sweeping generalizations! But they can be tempting. 🙂
“…but that is more troubling and traumatic for those who witness it than it is for me.” You touch on one of the most complicated–and deeply human–dynamics involved in illness and dying…determining what is causing who the most pain. Sometimes, in hospice, the intense physical requirements of the dying process are harder for surrounding loved ones to witness than they are for the person who’s actually experiencing them. This sometimes leads to what one nurse called “medicating the families,” where the patient is actually medicated to relieve the pain of someone else. (This is one of the areas where a good social worker, counselor, or chaplain is worth their weight in gold.) I hadn’t considered whether or not I might be doing the same thing on a communication level by withholding information from someone with short term memory loss–trying to protect myself. It’s true what you say. Delivering traumatic news is generally hard (very hard) on the person doing the telling…which is why it’s currently so epidemic among doctors to withhold information of a terminal diagnosis. And yet so often, even though the news is devastating, it can also be a profound and blessed relief for the person receiving the news. The confusion of not understanding what’s happening can be one of the most painful and arduous parts of any illness, terminal or otherwise.
I’d never thought about it before until you mentioned it…that there is no cumulative effect for the person with the memory loss. “I have no knowledge that I’m feeling it for the first time…” That burden would still fall on the shoulders of the person doing the reminding, but I know it would certainly make it easier for me, knowing that I wasn’t just striking the same raw wound, over and over and over again.
I’m so sorry for the loss of C, Elizabeth. She sounds like she was amazing at the end.
And I’m sorry for the accident that caused your brain trauma, although you sound like you’re pretty amazing, too.
A great teacher.
Wow. This was an interesting discussion. At first your post made all the sense in the world to me and I was about to thank you for pointing out this little rule of thumb. But then Elizabeth put a new spin on the issue. I would tend to validate her experience above your advice in this case. I really understand what you mean when you speak of medicate the family. It is often difficult to fathom who is more devastated by death, the one leaving or those remaining. This is why I believe that sudden death, while the best alternative for all of us (in my opinion) is horrible for the ones left behind because they haven’t had the opportunity to emotionally prepare for loss, they haven’t observed horrible pain or loss of dignity. It’s just poof…the loved one is gone.
I totally agree that if we know what is happening to us, then we are more able to with it. When we don’t know the mind has a habit of going into all sorts of contortions and over drives!
Re the memory: I wrote a page on my blog a while ago that sort of deals with some of the issues from coma onwards (though not in any serious depth – my purpose was to make my readers think, not frighten them off altogether!) although I am very different to those that you deal with in the sense that, now that I’m out of my wheels, I look and interact like most other people and that brings its own problems because people forget (which is a complement but a two-edged sword!) or just don’t ‘get it’.
Me amazing? I’m not sure about that – I just muddle through like most other people and, believe me, I have my tantrum moments!
Now, C, yes, she was incredible. Like most dying people she knew that her time had arrived and she ministered to those left behind far more than we helped her. There was a young doctor on paediatrics who was pregnant with her first child; C’s moment of death hit her hard and my husband ended up just holding her whilst she sobbed, but she said afterwards that she was so glad that her first encounter with child death had been with C as it taught her so much about how to react and deal with those situations. I get the impression – and I know that you and John know far more about this than I do – that medical training seems to focus on the mechanics and covers very little on the personal interaction side, so when they actually come face to face with it, often at a stage in their lives when they’ve never even encountered a close bereavement themselves, they are at a complete loss. It seems to be a big omission.
Hi Elizabeth! I went over to your blog and read the intricate metaphor you crafted for explaining what the experience feels like–it was exquisite. You’re quite a writer. I certainly wouldn’t guess from reading your blog that you live with a brain injury. I can imagine how that feels like both a gift and a burden sometimes…when people forget the challenge you’re up against. I deal with something similar with my depression. I look pretty normal so even those who know me well forget. Then, when an episode creeps up again, they often default to thinking my withdrawal is about anything BUT the depression. Sigh. The invisible illnesses are…as you so aptly phrased it…a double edged blade.
I’m fascinated by the journey you describe of your recovery. Do you mind if I ask questions or would you rather not? I noticed that your post wasn’t set up for comments and I have no desire to intrude. I’m just always way too curious about things. 🙂
There are actually many people who don’t know for sure if they’re dying or not. Some because of denial or fear. Some because they can’t get a straight answer. It’s rare that the person who’s dying takes charge and gets everyone else to deal with it. How old was C anyway? I’m not sure why doctors have such a hard time delivering that news. They certainly deliver other prognoses that are devastating, yet dying seems to stand in a class all it’s own. You’re right. Medical education and training to date focuses almost exclusively on saving lives, so when there’s nothing left to do (which is pretty much never anymore…there’s ALWAYS something else to do) they’re very much at a loss. Things are starting to change though. Classes on death and dying are now being taught in more medical universities.
Tell someone for what purpose. If you believe in an afterlife then they will have all the joy they need. If death is final then what good is a last sniff of a flower or seeing a sunset because once you’re dead your just dead. I see no upside to look into a persons eyes and tell them they don’t have long to live. Life is hope and hope gives us the will to live. Ending all hope is worthless.
The majority of people would like to know they’re dying before it happens. But there are certainly some who don’t, which is why it’s so important to listen carefully to each person, respect their needs and situation, and follow their lead. It sounds like you might be one of those who would rather NOT know beforehand in which case I wouldn’t burden you with knowledge you’d rather not have. But you also might change your mind when your time comes. It’s possible there are advantages to knowing that you don’t recognize right now…i.e. preparing your loved ones for the chaos they’ll face once you’re gone…that might seem more compelling once it’s all real.
But then again…maybe not. 🙂 Thanks for your comment Mikey!
Very good point. What about telling younger children?
I never worked with a family with younger children myself, but in general the feeling is that telling them the truth in a way they can understand is also best. They can sense when something is being hidden from them, and it tends to frighten them more. I know the one major no-no is to tell a child that they’ve “gone to sleep.” Turns out it can lead to a debilitating terror of sleep, which makes sense when you think about it.
The other thing about children and dying is that I think there’s a LOT we could learn from them…that perhaps our understanding of what, exactly, constitutes life and death is currently too rigid. I’ve heard amazing stories about experiences children sometimes have with what’s called “a sense of presence.” There was a particularly beautiful story I heard a woman tell on 60 Minutes or one of those shows. She was pregnant when her husband died in the twin towers on 9/11 and years later, when she was talking to her young son (the child from her pregnancy) about his father, he mentioned that he “used to talk to Daddy.” She gently tried to remind him that, no, Daddy died and went to heaven before he was born, but he just looked up at her and said something to the effect of “No, he didn’t go Mommy. He used to come and talk to me when I was still little in my crib.” She felt chills run up her spine. Actually, I just flashed on the previews I’ve been seeing of the movie coming out with Tom Hanks and Sandra Bullock. It’s something about a mother who lost her husband that day, and raising her son. I wonder if it might be based on that woman’s story? Hmmm. I’ll have to check it out.
That makes sense. I’ve heard that children (and pets), not having certain prejudices against “supernatural” happenings as perhaps many adults do, are better able to see or communicate with those “beyond the veil.” I do love the book “Final Gifts” written by a hospice worker. Another great book about a boy who eventually dies of cancer at about age six, written lovingly by his father, an M.D. is “Only Spring: On Mourning the Death of My Son”, by Gordon Livingston. That boy was so brave.