What it feels like to die.

There is only one guarantee in life, and although we may not know when it will come, we will all die one day. Some will consider it morbid to talk about death, so much so that it has almost become a taboo. The taboo subject has increased our fears of dying and maintained the mystery that surrounds it. Many of us are unprepared.
In the movies, the dying person often speaks in a hushed tone, as they reveal some important information, or their dying wish, and then they take one last gasp of air and it’s all over. An unrealistic portrayal.
Millenia of death experiences and more recently, scientific research, has allowed us to build up a picture of what death is really like from the perspective of the dying.
Death has changed in the past few decades; this is because of the advancement of modern medicines. We were much more likely to die from rather sudden, tragic death such as accident or a quick but severe illness in times before. This is not to say that this no longer happens, on the contrary, but many of us are likely to experience death as a gradual process. A slow downward hill, that speeds up towards the end.
The Gradual Decline
One of the most difficult parts for us as the living to understand, is how the body’s desire for those necessities such as food, drink, and the need to use the toilet, are suddenly no longer a priority as death approaches. As if the body itself recognises that those things are not important now. My patients often loose interest in food, or report a low appetite to begin with, then in the days that follow, they struggle to chew and swallow, before they stop eating all together.
In conjunction with this, there is a similar pattern that happens with the energy levels, they become weary, easily tired, spend more time in bed, then finally they slip into a state of deep sleeping. The changes are subtle, in most cases this time is generally peaceful, like a gentle winding down to life that happens over a period of several days.
The moments before death are not thought to be painful. Mostly as at this point the brain has set itself into a comatosed state, and therefore much of the normal awareness we possess in our awake states is lost. As if they are half sleeping, half awake, feelings of pain, hunger, thirst are all put on the back burner as the brain now sees this as low priority. Although the brain sacrifices complex thought processes, our senses such as hearing remain. This means that the dying person can still hear you right till the last moments. Studies have also shown that just before we die, there is a sudden surge in brain chemicals, which many have interpreted as a euphoria moment. A moment of brain excitement and perhaps a pleasant feeling before the body stops. The brain chemicals will continue to fire long after this.
The Travelling Woman
This memory was not my first experience of death, nor my most recent, but one that was imprinted on me for what ever reason. It was 4:30pm on the district, I would be leaving in half hour. I rang my line manager; I had completed all my cases for the day – a rare moment- and wanted to see if I could help. She gave me the address of where she was at.
I remember it was raining that evening. It could not have been the summer as it was cold and dark outside. My line manager met me at the front door, she briefed me that she had met this lady last week, she was dying, and the daughter had called to say things were moving along.
The house was filled with family members who scurried off to busy themselves as we set to our work. She lay in a hospital bed, a large cross framed above her bed. She breathed gently, completely still, her eyes fixed and looking nowhere. She did not acknowledge us there, but we spoke to her as if she had. We carried out our checks. When we were finished, my line manager turned to me and simply said “she’s travelling”.
This phrase is one that has stayed with me since. It made perfect sense. Whether you believe in a life after this one or not, she was between life and death, travelling between two existences, with her destination nearby.
The breathing was slow and shallow, the pupils did not react. Suddenly there was a long pause where she did not breathe, then, after what felt like the longest moment, she breathed again.
“Cheyne-Stokes” I murmured, looking up at the nurse who had mentored me since my graduation. She nodded.
Breathing patterns change just before death occurs. Cheyne-Stokes breathing is a pattern where the individual may stop breathing for a few seconds or even as long as a minute before starting to breathe again, and signifies that death is near.
My line manager went off to find the family, while I made her comfortable. There was little else we could do, and she deserved to be surrounded by those who loved her most.
Most people die just like this, peacefully and gradually, not dramatic. There are of course certain conditions that can make the lead up to death very painful, this is particularly the case with cancer. However, this does not mean by any case that the person dying of cancer should be forced to endure some prolonged and painful death, instead this is managed with a good comprehensive pain regime.
The syringe driver
For Many in the terminal phase (but not limited to) will benefit from a syringe driver, to help keep them comfortable and to control pain. This is a handheld device, that pumps a continuous unbroken delivery of medication into the persons fat tissue, that is then slowly absorbed into the body’s system. There is no way that this hastens death but avoids peaks and troughs in levels of medication.
I had received a very vague referral from the GP, a woman in her 90’s was moving toward the end of life, and I had been asked to visit to see if there was anything I could help with. I was met by a kind, but rather proud daughter. She worked in television, and lived in a flat with her elderly mother, who had once been a typist in Parliament. The daughter was aware that her mother’s days were limited, she had been seen by the palliative team earlier in the week (specialist team who care for the dying) and she felt confident that all was under control.
At the time I was still a reasonably junior nurse, but perhaps looking back there was no way to have predicted what would come next. I asked if I could see her mother, and she led me to the bedroom, where a frail slither of a woman lay in bed. She looked tired and restless. I asked her if she had any pain, which she did not, she was sleepy. The daughter told me how the medications had been delivered from the pharmacy in anticipation, and I proceeded to check these. I left my telephone number with her, and the number for the night-time team before leaving.
A couple of days later, I received a call from the daughter to say her mother had died in the night, and whether I might be able to come. The daughter was distraught when I arrived. I sat her down, where she began to relay the events that unfolded since we last met. She told me how her mother became unsettled during the night when the carers were attending to her, the night nurse had been called out. The nurse had administrated a sedative drug by injection to help her feel calm, and recommended inserting a syringe driver, but the daughter had refused. From the daughter’s perspective, I can understand, the injection had worked, and her mother was able to sleep without distress. She had not seen the purpose of a syringe driver or anticipated her continued need for more medication. Unfortunately, her symptoms worsened the following night, she began to call out, shouting and screaming when the carers turned her in bed. She moaned and grimaced each time she was touched. Eventually the daughter had called the night-time team. The sad truth is that at this point in the night there are very few staff working and they are often busy, by the time the nursing sister reached them, the mother had already died. Should she have had a small dose of sedative delivered slowly by the syringe driver infusion, this would of in no way hastened death, but would have brought relief from distressing symptoms and allowed her to die peacefully.
When I was working on the twilight team, I was called out to a man who was in his final days. He was in a semi reclined position in his bed, propped by pillows, taking slow deep breaths that were drowned away by the noise of the hissing oxygen machine. When I approached closer, I could hear a gurgling, and bubbling sound as he breathed. This rattling noise is distinctive and is known by the rather unpleasant name of “death rattle”. When we are close to dying, we are no longer able to cough or swallow well enough to clear our own saliva, so it tends to pool a little. There is absolutely no evidence to suggest that this is painful, distracting or distressing to the dying person, in fact they do not seem to be aware of it at all. He was peacefully resting.
A syringe driver had been connected the previous evening, and as they tend to run over a 24-hour period, I was there to replace the medication. He was receiving a small amount of morphine to keep him comfortable. He did not respond to me as I went about my work. My colleague reports that he died on the following evening during her shift. Gradual and peaceful.
Caring for the dying is not as depressing as it might sound, it’s certainly moving, but something that has felt like a huge privilege. Even when an individual has lived a meaningful and fulfilled life, it has never been the case where it has been easy to help them pass on. In many cases the path of the dying goes through some very predictable patterns, clear stages in a sequence of events. I have learnt to recognise these stages, in the same way that a midwife identifies the patterns of childbirth.
Death is a natural process, a steady decline as we exit this life. This should not be a taboo, a myth, but something we learn to recognise and can feel somewhat familiar with, so that we may take the most of the last moments we have with our loved ones.