Here’s a delicate truth: we’re all approaching the ends of our lives. Every day counts us down, it’s just that most of us rarely talk, or even think, about it. And when we do, we feel scared of pain and panic and feeling out of control; afraid of sadness and saying goodbye; worried about deaths we’ve seen on TV or in films.
I’ve worked in palliative medicine for over 30 years, helping to improve the conditions of those nearing the ends of their lives. I’ve sat by the bedsides of scores of dying people and it’s taught me a lot about the realities – and misconceptions – of death.
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More than half a million people die in the UK each year and almost all of them from a condition that gives at least some warning that death is approaching. If you knew you had limited time left to live, what would you want to do? Who would you want to be with? Are you keen on hospitals? Could your home be suitable? What’s your opinion about being kept alive on a ventilator, even if you’re unlikely ever to regain consciousness? How much treatment is too much? Are you an organ donor?
Here is some good news: death is almost certainly not going to be as bad as you think. Just like birth, death follows a predictable pattern. Initially, illness reduces people’s energy levels. The mechanisms are complex, but the outcome is that they need more sleep. Naps help, but energy is quickly used up, and another snooze is required.
As time goes by, those naps last longer and change in character. Although the person doesn’t notice any difference, they dip into unconsciousness for a while, so we’re temporarily unable to wake them. At this point, it’s time to switch any symptom-managing medications to a subcutaneous route like a syringe pump, to stop any symptoms from coming back if we cannot rouse the patient when their medicines are due.
If their illness isn’t affecting their thinking, then a dying person will still appreciate their family and friends when they’re awake, the occasional sip of fluid, perhaps a spoonful of something tasty, although people rarely have much appetite. They may stay in bed. They may appreciate peace and quiet, or their favourite music (I’d prefer BBC Radio 4, by the way). The periods of unconsciousness get longer and, eventually, the dying person is simply unconscious all of the time.
Now, the next change begins: in deep unconsciousness, breathing is driven by the only part of the brain still functioning. This produces an automatic breathing pattern that cycles between deep, sometimes noisy breathing and very shallow breathing. The rate also alternates between fast and slow; there can be gaps that are several seconds long. Saliva may gather in the throat, causing air to bubble through the fluid, which makes a rasping or rattling noise. These noises are a sign of deep unconsciousness, not of distress.
At the end of life, during a phase of slow, shallow breathing, there’s an exhalation that just doesn’t get followed by an inhalation. As simple and gentle as that. Sometimes so gentle that the family around the bed doesn’t notice. No pain or panic; no sense of loss of control. This is what the vast majority of people experience.
By knowing this gentle pattern, dying people can make choices about where and how to be cared for. Their families are often asked to report dying people’s wishes. Do you know the answers? Does your family know yours?
This is an extract from issue 330 of BBC Focus magazine.
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