“You as much You as possible”: debunking myths about dying

Palliative care consultant Dr Matthew Doré offers a Christian and common sense perspective on the end of life and the dying process.

Dying is not natural, but it is normal. Indeed, many devout Christians find dying very tough, and it is meant to be, because it is not the natural order of things. We were never meant to die. 

Indeed, even Christ asked for ‘this cup to be taken away’ in the garden because death is so hard and unnatural. But ever since Adam and Eve, death has been ‘the new normal’, and alas, we all have to go through it. At some point, you (and I) will be on that bed looking up at your own family.

If there is one section of society that should be able to tackle and talk about death, it is the church. And yet we believers often shy away from the topic. But as a believing Christian myself, and a palliative care specialist, I offer these brief reflections: 

Palliative care is not justifying or naturalising death; it is dealing with our reality, that we will die. For years and years, dying was a neglected part of medicine, and it is only in the last 50 years that we have formalised palliative care as a medical speciality. However, I like to think we are the most non-medical ‘medical’ speciality.

I have had the honour of being a palliative care physician for many years now, and I am acutely aware that I cannot take away the sadness of dying. I can only treat symptoms, physical, social and psychological, and contextualise the spiritual. I think we are generally quite good at these aspects as a profession, although ludicrously under-resourced.

If I were to try and help debunk a misconception, the common one I hear is that dying is painful. I hope here I can be reassuring.

Dying in and of itself is NOT painful.

Don’t get me wrong, disease and illness can cause symptoms, some of them horrible, and my job is to try to alleviate those, but my point still stands, the process of dying itself is not painful. How can I possibly know this? Well, because many people have told me so. 

I have often heard, “I thought I would be in pain,” or “I just feel so tired”. Indeed, that is the most common symptom, intractable tiredness in which you even wake up exhausted. But it is rare for a patient with proper palliative care to be in pain while dying – not impossible, but very rare.

One of my professors once shared a quirky analogy (which I now often pass on to my patients, but apologies to any dentists reading this): “Dying is like going to the dentist. You absolutely dread it beforehand, but when you’re actually there, it’s not as bad as you imagined.”

The point is, we stress in anticipation of death, but when we are actually there, we realise it isn’t too bad. It is the uncertainty we are more afraid of, or the loss of control, or dare I say, it is the true realisation we are not in control and trust in God is to the forefront.

What do I mean by that transitional slowing down? Well, dying isn’t a straight, predictable decline. It’s more like a series of waves, ups and downs, split into phases.

·       Awake & Alert: dying patients may chat, laugh, cry, or ask about family, though they’re weaker. This is sometimes called a ‘window of wakefulness’.

·       Shallow Sleep: Eyes closed, but still listening. They might squeeze a hand or move their eyebrows.

·       Deep Sleep: Unconscious, unaware of surroundings.

Patients drift between these phases, up and down, shallow sleep, then awake again, before dipping down once more. Over time, the ‘awake’ moments become shorter and less frequent, while the deep sleep phases grow longer and even deeper.

This fluctuation can be confusing for families. One day, they might think, “Mum seems better!” and the next, “She’s worse today.” It’s important to understand that this back-and-forth is normal; it’s the body’s way of shutting down.

This might sound like a strange phrase, but after years of witnessing the dying process, I can’t think of a better way to put it.

“The body knows how to shut down.”

Just as the body knows how to grow, go through puberty, or carry and deliver a baby, it knows how to die.

It’s a process that happens beyond our conscious control.

As time passes:

The ’awake’ windows become shorter.

The deep sleep phases grow longer.

Breathing changes, sometimes faster, sometimes slower, with pauses in the breathing starting (1, 2, 3 seconds…), then restarting.

I know the deep sleep isn’t distressing because patients often fluctuate up to a ‘window of wakefulness’ after those long deep pauses in breathing and say, “I had a good sleep,” completely unaware of the breathing changes an hour ago. They are not distressed, just unaware.

Eventually, the pauses (known as apnoea) grow longer… 4, 5 seconds… and then, often without anyone noticing, one pause doesn’t restart. 

That is death.

There’s always grief, always reverence, but also something in us which feels this is wrong.

So what is palliative care?

The word (palliative, pallatif) was coined by Balfour Mount, and it means ‘to cloak’ as in ‘cover oneself in an outer garment’. This term is used to symbolise both protecting oneself but also not solving the root cause, just covering it. Palliative care doesn’t aim to remove the reason for the decline but to treat its symptoms. We are covering up the cause.

I take my role incredibly seriously, and almost all palliative care healthcare professionals have the same viewpoint that they don’t aim to change timescales, i.e. prognosis. That is in both directions. I don’t try to prolong life (although interestingly, numerous studies outline this is actually what happens) and I certainly don’t shorten it. My job is to let the process of the body shutting down take place, but also to make sure, holistically, we are the best we can be throughout.

People sometimes worry I will make them too sleepy, not realising that I wouldn’t be doing my job properly if I did this. As Cicely Saunders (the founder of the modern hospice movement) said, [our aim is to make] ‘You as much You as possible’. As a medical specialist, I am balancing factors to make you as much yourself as possible, as your body shuts down.

It is worth mentioning that I do sometimes withdraw treatment. Withdrawing something that prolongs life is very different from giving something which causes death. In withdrawing something, I am returning the patient to their normal trajectory, simply respecting the natural course of events which I recognise I am no longer able to halt. 

Withdrawing ventilation, for example, is letting the person die who otherwise would already be dead. This is never done without huge consideration by many professionals and is always with the aim of allowing a normal death. 

I am wholly against causing death through euthanasia or disingenuous terms like assisted dying, as this is shortening life, of which we don’t know the future. This goes against the core principles of palliative care, medicine and humanity, as I have written here. Assisted dying is assisted suicide and an insult to the value, worth and dignity of human life.

In conclusion, I am glad to say that, in the next life, I will be out of a job as there will be no need for palliative care in heaven. However, for the moment, in this broken world, there is. 

My job is to walk alongside you when you die, as a support, as a guide, as a well-trodden companion. I have in my backpack lots of tools to help us along the way. Palliative care has the principle of non-abandonment, in which we never give up. By that I mean we never stop trying to make ‘you as much you’ as possible. 

Like what you’ve read? Consider supporting the work of Adamah by making a donation and help us keep exploring life’s big (and not so big) issues!