If you are an average, run-of-the-mill person, you are probably not going to want to read this blog. Research suggests that 8 out of 10 people don’t want to talk about this topic at all because they have a genuine fear about it. This blog is about death.
But let’s agree, you’ll read this blog and I will keep it short and quick? Okay? Because the truth is that we’re all going to die and talking about how we want that to happen is actually really important.
One of our biggest challenges at the lodges with our palliative patients is that nobody wants to talk about dying, not even some doctors. It is much easier to avoid the conversations because it seems our world has decided that the narrative around death should be denial. But it doesn’t make any sense that we are so scared to talk about one of the few unavoidable things guaranteed to happen to us all.
So, in this blog, let’s be brave and ignore our death-denying culture and rather have a painful five minutes of reading, rather than a life-time spent avoiding a topic which may not be as scary as you think anyway.
People are often more concerned about the “dying process” than “death itself” but, be that as it may, here are some of the fears that stand out most amongst the living.
Fear of intense physical pain.
This is a valid fear and probably based on what happened to someone you know, BUT pain management is a huge part of palliative teams’ training and the sooner they start managing one’s pain and get on top of it the better. These doctors know exactly what cocktail to give you to reduce pain and keep you orientated. There is no need for anyone to suffer and I have never seen anyone that did. Part of what we pride ourselves on in our end-of-life care is that we focus on exceptional pain-management and helping people get the most out of their last days.
Fear of emotional pain
Dr Brittany Chessworth said that in her years of talking to the terminally ill as a hospice social worker emotional pain was often one of people’s biggest fears, but if you’re willing to engage, rather than shy away from hard conversations, she noted that “anticipatory grief, regrets, anxiety, and heartbreak were interspersed with reflection, vulnerability, honesty, reconciliation, support, gratitude, acceptance, and even joy.”
In palliative care, your emotional being is just as important as your physical one, and your family and loved ones receive the most incredible support and are carried through the ordeal. There is no reason to fear this. I promise.
Fear of burdening others.
This is a valid fear. Caregiver fatigue is real. It is overwhelming to care for someone you love when you are not trained. We all tend to pride ourselves on not needing anyone and then, one day, you need people and you assume that you are in the way, become a sympathy visit, become another box to tick, but there are many options. You have choices. It does not work for everyone to die at home. It does not work for anyone in my opinion to die in a hospital or traditional hospice, but we are breaking the mould and allowing you to spend your last weeks with us where it feels like home, but instead of your loved ones caring for you, a trained professional looks after your physical and emotional needs, and someone cares for your loved ones too. No one is burdened and no one is a burden.
Fear of the unknown.
Control gives us security, so not knowing how your life will end is probably frightening, but research shows that no average human being has made it out of life alive, or came back to tell us what happens after you die. Maybe we must look at death like the eastern countries and use the yin-and-yang approach. Everything is in balance. We must accept that there can be no life, if there is no death and embrace the mystery that, somehow, the fact that we will die gives our lives more value and makes them matter.
Fear of Non-Existence
Even the most committed religious followers have this fear that just maybe, we do not have eternal souls and that everything just stops. Rather than just avoid this scary notion, why not listen to podcasts, talk to your friends, unpack this, pull the thread, and decide what makes the most sense to you and how you can make it serve you?
In our culture we are driven by individualism: it is all about the person, and losing your identity can be intimidating. Maybe now is a good time to learn that it is not all about you.
Fear of Eternal Punishment
I have only experienced this once with an end-of-life patient. She was a devout Catholic and was terrified that she would not be forgiven by her God. She was with us for over seven months. In the beginning she spoke about her sins and her need for absolution all the time, but towards the end she was simply filled with peace and acceptance. Her view of a punishing God changed to the God I experience – One of grace and love and forgiveness. In all the deaths we’ve witnessed, people slipped away without fear of Danté inferno waiting for them.
Fear of Loss of Control
This is a valid fear. We see from our perspective how degrading it might be for a person to lose control of their bladder, their bowels or their dignity, but don’t underestimate the incredible resilient adaptable minds we have. If you are with a team that knows what they are doing, you will never feel like you have no control. Our teams work very hard to preserve our guests’ choices and their dignity in every way possible. Bodily functions are also part of life, and part of what we deal with every day, so they don’t scare us, and shouldn’t scare you.
Fear of What Will Become of Our Loved Ones and being separated from them
An interviewer asked Keanue Reeves what he thinks happens to us when we die. His answer was wonderfully surprising to me. He simply said, “I think those who love us will miss us very much”. That’s true and it is heartbreaking, and we definitely need to acknowledge that, but maybe it need not be a fear. Perhaps the fact that we acknowledge that we love and are loved can push us to make the most of our lives and our loves. Someone once said that grief is simply unexpressed love, so if we’re willing to talk about when we’re not going to be here, we can express our love while we have the chance.
Existential anxiety
The idea of death can definitely make this type of anxiety much worse as it is the final big unknown, where no answers are guaranteed. . I firlmly believe that we can overcome this by rather talking about it, rather than skirting around the issue.
Dr Kurt Gray, a well-known researcher, did a fascinating study on humans’ relationship with death. He asked a group of people to IMAGINE that they are dying to record what they believed they would be thinking each day. He then asked people who were terminally ill to do the same. The difference was astounding. The writings of those who just imagined they were soon going to die was fraught with fear, negative thoughts, sorrow and regrets. Those who were actually facing death had a much better acceptance and were positive, grateful and even humoristic.
Death is inevitable, so we have to keep talking about it. It can only help. Encourage your children, spouses, lovers, partners and especially your oncologists to talk about death. When we’re willing to look it in the face and talk about it, it really does help diminish its power.
https://www.psychologytoday.com/za/blog/managing-health-anxiety/202212/do-you-fear-the-dying-process