Part two of our two part series on living with dying:
UK Best-selling author and palliative care doctor Kathryn Mannix wants to destimatize the process of dying so our last moments can be comfortable for everyone.
With the End in Mind: what we need to know about dying to plan well and fear less
When I was asked by a woman with incurable but treatable ovarian cancer to write an article for other women like her, I was delighted. The invitation came from someone who had read my book ‘With the End in Mind.’ She had found that the book gave her information, consolation and encouragement – which she hadn’t really expected in a book about dying.
So why did I write a book about dying? Well, over my thirty years in palliative care the more I saw of dying, the less afraid of it I became. The easier I found it to describe the real process to my patients and see them relax as all their terrible imaginings were replaced by calm facts. But we can’t keep explaining dying to one family at a time: everybody needs to know more and fear less if we are to change the public’s perception. This book of simple, human stories of living with dying is my contribution to public understanding.
So here it is, ladies and your supporters. This is a very matter-of-fact explanation of what happens to us, human beings all, when we reach the very end of our lives. We’re talking the D-words here: dying, death, dead. Grab a cup of whatever you enjoy; then read on.
Have you ever noticed how hard it is to NOT think about something? In my Cognitive Therapy (CBT) clinic, I meet people who are troubled by anxious thoughts that intrude on all their other thoughts. They are trying to enjoy a TV show, or a day with gal pals, or just buy their groceries, but that little gremlin keeps whispering the One Thing they don’t want to think about. For some it’s the ironing pile or their tax forms; for others it’s a financial worry or a relationship problem; and given that my clinic is in a Hospice, for some it’s that pesky D-word thing. ‘No matter how nice this moment is…’ ‘I can’t start that new hobby because…’ ‘I won’t maintain this friendship because…’ and the idea of death just keeps popping up like a new spot on a date-night. The more we try to ignore an intrusive thought, the bigger it becomes until it becomes the whole focus, and it spoils everything else.
Now, the clever CBT trick to deal with unwanted thoughts is to actually think about them. Really think about them. Ask myself what else I need to know to think about my unwanted thought properly. Ask myself ‘What’s the worst thing that could happen?’ and when I answer that question, take that answer and ask myself ‘…and what’s the worst thing about that?’ and keep doing that until I have really, really thought about The Bad Thing. Then something mysterious happens. Now I’ve given The Bad Thing some deep attention, I discover that thinking about it may make me feel sad, or anxious, or cross – but nothing bad actually happens when I think about The Bad Thing.
In fact, by thinking about it, people discover new things they didn’t know before: things they can plan for and deal with. They also discover that some things they believed aren’t true. Some things they dreaded are unlikely to happen. Some things they read in the paper or saw on TV were overdramatic. So instead of feeling sadder or more afraid, they feel better.
Let’s talk about dying for a moment. Most of us have never watched anyone die in real life. On TV and Cinema it’s all choking and gaspy and last words before a slump: in real life, it’s just not like that. How can I say that? It’s based on my career of working with a lot of dying people; around ten to fifteen thousand of them. Almost all of them gentle at the end. Are you ready to read on?
Here’s what we see. Here’s what you’ll see if you’re watching it happen to someone. Here’s what the people around you will see when it’s your turn. Because sooner or later, we all have a turn.
Firstly, it’s worth saying that any illness so severe that it kills people in the end follows a very similar pattern towards the end of life. People feel tired. Really, really tired. They do less before they run out of energy. You may already be finding that. In which case – well done! That’s normal. Heart disease, lung conditions, cancer, extreme old age: the pattern is the same in the end.
The illness we die of, of course, might cause some symptoms. That’s something worth getting expert advice about as early as possible. That’s what palliative care is for. For diseases that put pressure on abdomen and pelvis, the symptoms might include bloating, bowel irregularity, vaginal bleeding, colic, nausea, vomiting – or no symptoms apart from tiredness. Having a plan for your own set of symptoms, tailored to you, and with a backup plan for if you’re too sleepy to take medications by mouth, is good planning. Future you will be glad of that plan, even if it never needs to be used. It’s like an insurance policy: if you need it, you’re covered.
So: tiredness is the main symptom. Sleep is its treatment. Snoozes and naps restore our energy levels for a while, but as time goes by the levels drop faster and further. We become sleepier: some people spend days being mainly asleep, but waking up for conversations, a favourite TV show, a few bites to eat. Then off to sleep again. So far, so not very Hollywood.
Eventually dying people simply sleep all the time. In fact, it’s not just sleep: for some time during the sleep-wake-sleep time, they have been slipping in and out of unconsciousness without noticing it. We don’t notice when we become unconscious. It doesn’t feel like falling asleep. Gradually, they become more deeply unconscious, possibly still occasionally wakening but eventually they are simply unconscious all the time.
Once we are unconscious, our brain is unaware of anything, except possibly what it hears – many people describe how having familiar voices in the room soothes unconscious people, and I have seen unconscious people match their breathing to the rhythm of music being played to them. Fascinating!
The unconscious brain now only does one thing: it runs breathing on an automatic cycle. This cycle goes from fast to slow, and moves between deep and shallow. We don’t control our voice box any more, so the breath might make sounds as we breathe. This isn’t pain, or attempts to talk: it’s unconsciousness.
At some points the automatic breathing might be shallow and fast: this isn’t breathlessness, it’s just unconsciousness.
Sometimes we ignore the tickle of saliva in the back of the throat – that’s a sign of being very deeply unconscious, because otherwise we’d cough or swallow to clear it. If the breath is coming in and out through a small pool of liquid like that, it bubbles through, and the noise is sometimes called ‘the death rattle’ – it’s a sign of deep, deep unconsciousness.
And then, during a period of shallow breathing, sometimes now with pauses in breathing, there will be an outbreath that just isn’t followed by an in-breath. As gentle as that. No drama. Just very quiet. It won’t frighten anyone. It won’t give anyone nightmares.
My experience is that family members find it deeply consoling to be present as someone they love is dying, and the better they understand the changes taking place, the more confident and prepared they feel. Just as a midwife describes what to expect during labour to a pregnant Mum and her birth partner, then reminds them of it all again as it’s happening for real to make them confident that the process of labour is happening as expected, so we benefit from understanding the process of dying well ahead of time. Then, when it’s happening for real, we can remind each other that this is normal; this is what happens; we can do this.
I think I can manage that. I’m sure you can, too.
With the End in Mind
Kathryn Mannix’s first book With the End in Mind was published in 2017 to critical acclaim. Shortlisted for the Wellcome Prize in 2018, it has become a widely recognised text for aiding our understanding of death. Further details can be found at https://www.harpercollins.co.uk/9780008210915/with-the-end-in-mind-how-to-live-and-die-well/
Readers can purchase a copy here: https://www.bookdepository.com/With-End-Mind-Kathryn-Mannix/9780008210915
Go to: Part 1 by Palliative Care Nurse Specialist Diane Evanswood
