Dealing with Death.

Written and published on the blog on 31st March 2025.

This title is a pun, I may as well confess now. I’ve started on a low- the title ‘dealing with death’ sounds like I’m going to write about emotional and psychological coping following bereavement or one’s own knowledge of mortality. I’m instead going to write about how people engage in bartering with the mortal coil. I come across a small but attention grabbing group of patients every day who wish to deal with death, they often see me as the intermediary. I don’t claim to have such powers, if asked I would deny any suggestion of collusion with the omega to everyone’s alpha. Unfortunately I am not asked and were I questioned on this topic I suspect that I wouldn’t be believed. Denial is the best way to confirm people’s beliefs, if popular politics are anything to go by. 

When I talk to people I spend a reasonable part of any discussion getting a sense as to how they think about the world, themselves and illness. These form the magical triad of all things most relevant when it comes to death. *. The world is how we see medicine and things remote but personal to us. Are they fearful of treatments-due to experiences, media or a general and healthy sense of paranoia? Within the world do they see their part as a leading or as a supporting role and has the world been kind to them? 

Contrasted with this is the consideration of the person. Does this individual with whom I speak to today see themselves as philosophical, or as kind or do they not consider such things? It can be awkward asking such questions and so I find myself inferring from statements and cues the direction of internal monologue of the individual. Each statement ideally cross referenced as I speak and observe. Silence and a smile are often the best tools at this point. Illness often sits within the tapestry of self- those who see their illness as persecutory will often be those who view themselves as the main character, trying hard to correct the faults (so many faults), of those around them. Of course some people are simply afraid. They have no deeper associations beyond having never been able to express or weigh the gravity of their own demise. 

I have found that often the best way to manage those who attempt to bargain with the concept of the unknowable is with gentle persistence and forewarning. Once I understand that I might be in a consultation where the recipient of information is unlikely to welcome such information then I can start to break it down. Each participle of data regarding the possible consequences of known illness can be signposted and summarised until their appearance within the landscape of the conversation is no more remarkable than a roundabout on any UK road. 

I am not an omniscient teller of fortunes. Sometimes I think it is statements like this last one that highlight how hard life is for many. Because it can feel like the person delivering bad news has a Pandora’s box of hurtful information. That this can’t possibly be true, that such information exists whether given voice or not, is rarely seen as the point. However, keeping perspective is perhaps that key to managing such discussions. When being accused of divine insight I find it best to confess human frailty. I may be wrong, we all are at times. A future that may not be desired is undesirable, there is no escaping this. Yet a future unknown and unplanned is almost always going to be harder than one which is planned for, no matter how hard the planning may be. 

*I say most relevant to fend off the pedants here; there are many considerations but a consultation can only include so much at initial meeting. 

Creative distress.

Creative Distress

Posted on August 12, 2021 in the BMJ SPC blog originally.

We have a lifetime to prepare for our dying and yet it seems that for most of us we still arrive ill-prepared.

As humanity has evolved we have taken advantage of our creativity to forge industry, economics, art and politics. However, when it comes to dying creativity is the last thing we need. Death is such an enormous concept that that it seems too big for us to able to conceptualise, despite the personal or professional experiences we may bring with us. To put this another way: I can list the oceans of the world and have seen a number of them but I cannot visualise a billion fish.

When discussing dying with our patients we often come up against a concept that I am going to term: ‘creative distress’; an acquired emotional and psychological pain that comes in part from the recognition of dying in the most personal sense.  As professionals we persist at such discussions because we recognise that for many people the distress of ignorance is ultimately greater than that of understanding.

However, for some of my colleagues I know that they find these discussions more of a necessary but unwanted duty than a part of the therapeutic process. When talking about these discussions of prognosis and dying I frequently hear sentiments that these conversations cannot be done better, that they will always be distressing and are best analogised to tearing a plaster off an old wound. The conversation’s success, to these colleagues, is measured in the time taken to complete it rather than by the impact of the conversation on its recipients. I visualise this as similar to looking at a graph where there is a bell curve of responses to the news that one is dying- from indifference to extreme distress or denial, where the mean of this bell curve is represented by ‘some distress’. For those who hold to these conversations being necessary, but not therapeutic, the graph will always be static, their conversation cannot change the number of responses that sit in any part of the bell curve.

The NHS, NICE and various charities all agree that advance care planning is important, we have studies showing this to be true1 and yet discussing dying remains a barrier in regard to both advance care planning discussions and probably recognising dying too. Despite many excellent pieces of research looking at barriers and education around ACP discussions, discussing dying and improving skills and competency in these discussions we don’t have a true solution to this problem2,3,4.

Perhaps the greatest challenge lies in taking these conversations away from tools and formulas and instead encouraging a focus on a creative approach to the discussions being held. Each discussion may have echoes of prior consultations but will also be unique in its own way. Only by encouraging open thinking as to how to engage individual patients are we likely to get better at having these conversations and ultimately move away from the fixed graph metaphor above to one where an effective conversation can hold the power to shift the level of distress being experienced away from the end of the bell curve.

References:

1. Detering, KM, Hancock, AD, Reade, MC, Silvester, W, 2010, ‘The impact of advance care planning on enDetering, KM, Hancock, AD, Reade, MC, Silvester, W, 2010, ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’, British Medical Journal, 340: c1345.doi:10.1136d of life care in elderly patients: randomised controlled trial’, British Medical Journal, 340: c1345.doi:10.1136

2. Yates, P. 2017, ‘Advance Care Planning the: The Pro’s and Cons’, Journal of Thoracic Oncology. DOI: https://doi.org/10.1016/j.jtho.2017.09.160

3. Lovell, A, Yates, P. 2014, Advance care planning in palliative care: A systematic literature review of the contextual factors influencing its uptake 2008-2012. 28(8), 1026-35.

4. Rietjens, J, Korfage, I, Taubert, M, ‘Advance Care Planning the Future’, British Medical journal Supportive and Palliative Care. Vol.11, Issue 1. http://dx.doi.org/10.1136/bmjspcare-2020-002304

Exploring the unknown.

At a recent family event a relative explained in long suffering terms how no-one knew why she had a persistent, low level tachycardia at times. The issue appears benign and this person had been thoroughly scanned, tested and observed over time. I bit my tongue. However, I wanted to say that what would have been more helpful for this person is if the GP, cardiologist and others said more clearly that they did know what was happening. There was no clearly identifiable pathology or disease and although we aren’t sure why some peoples’ hearts beat a little faster we can be reassured that in this case it is within the normal range, just at a more distant end of normal.

We live in a time of tyrants, of dictators who infiltrate democracy. It seems when I listen to these abhorrent individuals that what is most appealing to their followers is a sense of certainty. I don’t propose that there is much to learn from such rhetoric, but there may be a message that comes from understanding why many people will vote for a known dictator despite this not being an objectively good thing. There is a power in answers that the search for a perfect answer can leave behind. An imperfect answer may be a more therapeutic thing to many patients than a perfectly correct but unsatisfactory or misunderstood answer.

Within medicine I have long campaigned and written about managing uncertainty, that being comfortable with the known unknowns and the unknown unknowns is a key part of being a clinician. However, the story above of my sad relative who feels like they are a medical mystery; highlights how we sometimes compound misery by trying to too accurately reflect the complexity of medicine in a fashion that can be unhelpful for patients.

I don’t advocate here for half truths or benign confabulation. Simply said I wonder if when explaining something that is not pathological, or is pathological but we can not influence it, that instead of saying we don’t why it has happened we could instead provide a landscape. Upon this landscape we can draw the neighbourhoods, the topography, on which to settle the city of our uncertainty. It may be true that the uncertain city’s streets are not mappable but we can still provide a name, a location. The journey taken to a point of uncertainty is usually a very clear one in medical terms, whether the decision has been made to investigate a thing or not is a decision made on the foundations of decades of knowledge, experience and scientific method.

The relative in my story above would likely not have welcomed my input, I have a different role in their world and the consequences of changing roles can create fissures in the delicate landscape of family relationships. Moreover, I would always be lacking parts of the picture as an informed observer, the desire to do well would nonetheless be ineffectually mirrored in the reality of consequence.

It is therefore as a medical practitioner that I hope my actions in exploring the meaning of uncertainty may make a difference. Sometimes we have to cross the bridge of knowledge before we can confidently say we don’t know and when we take our patient blindfolded and reveal their destination we shouldn’t be surprised if they seem upset.

(The family member referenced in this article has reviewed the article and given consent for the details contained within to be shared in this format.)

Originally published in the BMJ SPC blog on the 2nd March 2025.