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Sarah Malik 11 April 2019

The inconvenient truth about dying

When it comes to dying, we shouldn’t gloss over the difficult bits
Healthcare professionals Our thoughts

After reading a recent blog from Kathryn Mannix, respectfully, my heart sank.

There is undeniably a valuable message here about how peaceful death can be. However, I’m uncomfortable with the assertion that this is the norm and something to be expected either by healthcare professionals or the person dying and their family.

Many things can affect the way we die

I continue to come across the sentiment that ‘whatever illness is causing our death, the way we die is always pretty similar‘ and I find it particularly troubling.

Both the conditions we are dying from, and the settings we are dying in, can greatly impact the way we die.

There are far too many variables to make such sweeping generalisations. How can we possibly compare someone with sickle cell disease dying from a severe vaso-occlusive crisis, in pain that cannot be controlled while in a busy ward environment, to another in a hospice who has slipped, seemingly comfortable, into a minimally conscious state? We simply cannot apply the same sanguine message to all.

So whilst we all share the common goal of wanting good quality palliative care to be available for all (regardless of what condition they are dying from), let us also be realistic about the stark health inequalities that continue to be experienced throughout the UK. Many people won’t receive meticulous management of their symptoms, or an opportunity to discuss their treatment and care preferences.

The inequity of palliative care provision is further compounded by the systemic NHS funding and staffing crisis broadly impacting all aspects of treatment and care, including the care of dying people. And sometimes, despite the determined efforts of the best palliative care available, it isn’t always possible to take away the pain and the suffering of a dying person.

A missing detail from the ‘last breath’ argument

The point that ‘at the very end of somebody’s life, there’s simply an out-breath… and no more in-breaths’ is of course physiologically true — dying will always end with a last breath.

However, I would argue that there is some crucial detail missing from this portrayal of death. In the time leading to that final ‘out-breath’ it may not be quite so gentle an experience for the person dying or their family (or indeed the nurses who are more often present when someone is dying than doctors are).

The medical profession seems increasingly consumed by their need to reassure people that everything will be fine.

Perhaps some are so intrinsically gripped by paternalism that to accurately report the incidence of difficult or ‘bad’ deaths draws them a step too close to acknowledging the limits of their practice. Or perhaps it feels like an admission to failure.

There is no ‘normal’ process of dying

As a nurse, working in palliative care has taught me that there is no ‘normal’ process of dying. Yes, there are certainly patterns that can help you identify when someone is closer to dying, and there are things that we try to do to alleviate some or even most of their suffering. But sadly, people don’t always fall into a pain free deep sleep. Traumatic deaths are happening on a regular basis and involve a lot more than a change of breathing.

I really wish the process of dying was always as gentle as is often described, but it isn’t, and to say, or even teach that it is could have potentially damaging consequences for the dying person, their loved ones and the healthcare team.

It is not in my interest to scaremonger and I truly value what palliative care is capable of. But I am also aware of its limitations. I therefore can’t help but feel some medical students will be vastly ill prepared for the less dignified and difficult deaths that are occurring if we choose to leave the tough bits out of teaching sessions.

I understand the desire to support people who have a terminal diagnosis to feel comforted about death. But is it really so honourable when we achieve this by glossing over the difficult bits, stitching on our red capes and broadly claiming ‘we’ve got this‘.

How can we possibly credit ourselves with opening up conversations about death if these conversations only focus on the more palatable versions of dying that we’re more comfortable with discussing and sidelining anything potentially uncomfortable for the fine print?

Let us know what you think, or if you have a story to share get in touch — via email or on Twitter.

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