(Barbara Karnes, RN, is a speaker, educator, author, and thought leader on matters of end of life. She is perhaps best known as the author of the classic booklet commonly used in hospice care, “Gone From My Sight: The Dying Experience”. This article was first published by BK Books and is reposted with permission.)
“In people’s imagination, dying seems dreadful; however, these perceptions may not reflect reality. In two studies, we compared the affective experience of people facing imminent death with that of people imagining imminent death. Study 1 revealed that blog posts of near-death patients with cancer and amyotrophic lateral sclerosis were more positive and less negative than the simulated blog posts of non-patients — and also that patient’s blog posts became more positive as death neared. Study 2 revealed that the last words of death-row inmates were more positive and less negative than the simulated last words of non-inmates — and also that these last words were less negative than poetry written by death-row inmates. Together, these results suggest that the experience of dying — even because of terminal illness or execution — may be more pleasant than one imagines.”
http://journals.sagepub.com/doi/full/10.1177/0956797617701186
This research study was sent to me for my opinion. I thought it was interesting, and since others may see it, I thought I would add another perspective to the research.
First, what is meant by “dying person”? In the months before death, most people really don’t believe they are dying. “Other people die, not me. There will be a cure, a mistake, or a miracle”. They also begin withdrawing, showing less interest in the outside world, and become more introspective. That introspection is not always peaceful or even positive. Thoughts and behavior will relate to how much fear is present. We are all going to be afraid as we approach death. It is the degree of fear that we look at. So posting on a blog, which is doable in the months before death, doesn’t equate to believing that death is really going to happen.
In the one to three weeks before death from disease, a person has gone almost completely within. Interacting less, sleeping most of the time, appearing confused, talking with those already dead. I don’t really see a person talking about death or dying in any cognitive manner during that time, especially not posting on a blog.
So we are back to months before death, from diagnosis to what I call labor (the one to three weeks before death occurs). The article uses the words “love, social connection, and meaning” to describe the positive emotional response and increase. If the person has been told they can’t be fixed, they certainly have the opportunity to look at their life, evaluate, and demonstrate these three things. And yes, some do. There are dynamics to dying. We will approach death in the same manner we have approached other challenges in our life. Dying is one more challenge. Our personality doesn’t change just because we have been told we can’t be fixed. In fact, our personality traits become intensified, more exaggerated, more pronounced. These aspects would affect the positive or negative as we see our dying and life. Just the nature of these people in the study posting blogs gives an insight into their personality as more outgoing, interactive people, hence striving for connections.
I think it is human nature to look for love, connection, and meaning. We don’t necessarily have to be dying to do that. Dying gives us the opportunity — the gift of time — to reach out, but many do not take that opportunity.
My overall response to this research is I do not believe in a blanket statement that a person who is dying becomes more positive as they approach dying. Some may, but just as many may not. Again, we die the way we have lived. Our personality doesn’t just change from negative to positive. It can, but it is just as likely it won’t.
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who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN educates qualified individuals in practical,
peaceful ways to end their lives, offers a compassionate bedside presence, and defends
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I think you are correct, but then how would I know. Now, healthy, I fear death, mostly because of the finality of it and never to exist again, but also if I do exist again, still with this mind, I will remember some hurtful things, that I’d soon not remember for eternity.
The writer’s opinion is based on her experiences and observations as a hospice nurse. The study is based on analysis of 2,616 blog posts by 30 people during the last two months of their life. They knew they were dying (all of them did die during the course of the study). Researcher Kurt Gray concluded: ”When we imagine our emotions as we approach death, we think mostly of sadness and terror. But it turns out, dying is less sad and terrifying—and happier—than you think.” I find this a bit of hope for a relatively good death.
I have to say….when I am told that I cannot be fixed and there’s nothing more the doctors can do for my cancer, I will then be at peace. I know this because it happened 2-1/2 yrs. ago. I had had multiple surgeries for head and neck cancers for the past 16 yrs., the chemo wasn’t working, I was in pain and was fine refusing anything more. They told me I was going to die. But, at some point, the immune therapy they added towards the end of treatment must’ve kicked in and the tumors started shrinking. But it’s temporary; doctors know it and so do I. This will re-occur again – it just never really goes away – and after all I’ve been through I won’t go through any more. And I know it will be the right decision. So that in itself, puts me at peace. No one can understand this unless they have been faced with death.
Studies like this are interesting. It’s important to remember though, that statistical generalizations don’t predict individual responses. Each of us has lived and will continue to live a somewhat unique experience.