Blog 5: The power of truth

I remember reading an essay by Ralph Waldo Emerson a while back called "Self-Reliance" that left quite an impression on me. It is a powerful reflection on how conforming with societal norms and expectations can become detrimental to our personal growth and individualism. He encouraged the habit of telling the truth, even when it is difficult.

Waldo Emerson 1803-1882

We have all experienced those moments of introspection prior to opening our mouths- "I'd better not say that" or "I'd better phrase this in a certain way". Of course this is often done out of genuine concern about upsetting an individual or group. I would argue this is a decent and noble approach in many circumstances. Being coarse, consciously offensive or insensitive rarely produces a productive resolution to any conversation, this is not what I took from Emerson's words.

No, what I got from Emerson's essay is covered perfectly in the following quote from Emerson:

When we read a profound story or watch a film that really strikes a chord within us it is often because we have shared similar inner feelings or thoughts in the past. At those moments we gain comfort that we were not actually alone in those ruminations but we may also experience  an admonition that we didn't see our own sentiment through. 

Oh but how reserved we tend to be in the public domain. Imagine what would occur if we verbalised to others all those deep and profound ideas we hold back. We keep so much inside in an effort to protect ourselves and others. The concepts of self-trust, self-awareness, and self-acceptance are difficult to grasp tangibly when faced with the machinery of the societies we live in. 

We often talk about "the elephant in the room". Everyone knows what is going on, some may have valuable contributions which would help tame the "elephant"; but silence reigns or conversation meanders towards more innocuous trivialities. The tension persists and everyone remains locked in their own minds, playing out the potential scenarios that could enfold.

As mentioned above there are times when a measured and gradual approach to a difficult conversation makes sense and is the kindest route for all involved. For some subjects however, I have come to believe that honest transposition of thought into action can be particularly worthwhile. When a subject matter finds itself thrown into the uncomfortable, difficult or off-limits pile; we should take a step back and ask if it truly belongs there. Who decided that it fits into this grouping? Why has it been grouped as such and what actually happens if we participate in such conversations? It is certainly not easy to find the sweet spot with difficult conversations and we may engage in an altruistic tug of war trying to protect one another- something has to give.

This is a palliative care blog so let's get some white elephants out in the open for discussion. I'm talking about "D-words" : Death, Dying and Died.

Even as I type those words I become acutely aware of my own inherent apprehensions to talk openly about this area. I am currently thinking about how I approach the rest of this blog. 

Strange that isn't it, especially for someone whose job is intimately entwined with dying. I often hear a rallying cry from the medical terraces to do away with the allusive language surrounding dying and death. There is no getting away from the words "they have died",  the meaning is clear and probably one of the most unmistakable statements that traverses both history and culture.

We find it hard to say though. Died, death, dying. We use euphemisms that we perceive to be kinder and more respectful. 

Terms such as:

 "Passed away"; 

"Moved on"; 

 "Departed"; 

 "Slipped away";  

"Lost their battle"; 

"Didn't make it";

 "Went to a better place";

 "Gone to sleep";

 "We lost them". 

We use such terms for several reason as far as I can see. The primary purpose seems to be to protect others. The idea that using a kinder terminology will soften the blow makes sense. We do this with so many daily situations. I'm sure we have all told a wee white lie or played down an event to shield someone close to us from upset. I'm not sure this approach works when someone dies though. Death doesn't occur in shades, it is all or nothing. I can now understand the reasoning behind encouraging people to use the word died as opposed to the list above. 

Let's take a couple of the terms used as examples. Children take things very literally, it's one of the things that makes kids so endearing to me. It often results in hilarious conversations and makes a mockery of us as "sensible" adults.

 "Why do I have two eyes when I can only see one thing?" 

"Why can't I put ketchup on my cereal?"

"What are the spaces between the bits on a comb called?"

Their concept of death and dying changes as they grow. I have included a link to a brilliant video on this below. It really opened my eyes when I first saw this.

Children's understanding of death at different ages | Child Bereavement UK 

Using terms like "Gran has gone to sleep" can be taken literally. The child may still expect gran to wake up and return. Confusion occurs in time as gran does not return and the conversation is reignited by the naturally curious young mind. It may even lead to a fear of going to sleep as the child attributes sleep with disappearing or becoming unwell.

Another term that has become notorious is "we lost them". There is an  anecdote commonly found  in health care which goes something like this:

 A worried relative turns up to hospital having had a phone call about their elderly father who has become unwell. 

On arrival they are led to a room by the doctor who states:

"I'm sorry to be the one to tell you this but we lost your father."

 To which the relative replies: "Well why aren't you out looking for him?". 

The doctor tries again: " No, what I meant is he didn't make it out of the ambulance."

Relative: " Can't you bring him into the ward now? what's the delay?"

Doctor: " We did all we could but he is no longer with us"

Relative: " So where is he? I am so confused, I thought he was in the ambulance"

Ok, I have never witnessed such a scenario but could it be possible? Maybe not all at once but taking each individual euphemism it becomes much more plausible. I have seen the gentle approach prolong rather than cushion the impact of breaking such bad news. Very often the conversation comes to a conclusion once the person receiving the bad news offers an inroad or invitation to hear the definitive "D-word"

" Are you telling me what I think you are telling me?"

" So what you are saying is my dad has died?"

" So what is it you are really trying to say?"

Is this process kinder? I'm not sure. I can't comment for everyone and would never propose that a protective approach has no merit. Thinking about the above scenario I put myself in the position of the doctor and reflect on what is driving their use of language. 

We have mentioned the noble concept of trying to protect others. Is there a role for such allusive language to protect ourselves? Is the doctor ensnared by the same anxiety-provoking ideas around discussing death that permeate society? 

Despite dying being a natural part of life and universal, how does training prepare health care professionals for talking about death? How much of doctor's training in medical school covers the dying process, communication around this time and the topics of grief and bereavement? We come back to the concept here that medicine is meant to make people better, to cure, to heal and to prolong life. If you have read my earlier blogs you will remember I was guilty of adopting this view as a junior doctor. Death was most likely medical failure, something was missed, something went wrong. It's a good while since I was at medical school so I am not best placed to comment on current practice. I do remember excellent sessions with actors/actresses practicing how to break bad news to patients and relatives. These scenarios usually involved imparting a diagnosis that would lead to an emotional exchange. I never had any training on how to discuss dying and death. The first time I did this I was doing it for real and I felt so uncomfortable. 

Why was that? On reflection, there were many factors. I was worried I wouldn't appear professional. I might say the wrong thing. I might appear cruel. I might let my emotions show. I won't know how to console the family. I won't know what words to use, how to introduce the topic and when would be the right time to leave the room. Should I feel guilty and express that I am sorry? Will the family be angry at me or ask me what went wrong with the treatment. 

Over time I learned an approach to breaking bad news that covers most instances. It is a basic template that I keep in mind, it is a guideline never a tramline without branches. Difficult conversations are fluid. Adopting a rigid framework doesn't work for every situation and trying to follow orderly steps can overcomplicate things. The brilliant Dr Kathryn Mannix has written extensively on this topic. I'd highly recommend her latest book "Listen" which is full of wonderful observations and advice on how to approach conversations that we may wish to avoid. 

I do use the "D-Words" in my role as a doctor. My own personal experience is that they do not add confusion, suffering or grief to an event that holds an intrinsic sadness regardless of the language used. The words are never spoken in isolation. They are framed in a context, delivered with compassion and respect. Delivered in as quiet and private a setting as possible. I am never alone, always with a colleague- I don't always have the right words and we all need support. The words are never spoken in hast, it's not my time but that of the family. Silence is not broken, crying is not curtailed, words are calm yet unambiguous and privacy is respected. 

Is it maybe that the "D-words" themselves aren't what we really fear but the event itself. The emotional pain and how we might react in front of others can produce an unresolvable tension. You may have heard some apologise for crying, hide their face or wish to be alone to express their grief. Acting out our true instantaneous emotions is difficult, I found this out personally when both my parents died. So many profound thoughts and things I wanted to say to them and others but what came out was often a diluted, processed and abbreviated form of the truth. There I was, the palliative care doctor facing the death of those closest to me acting out the "rules" I had learned from wider society. Trying to protect others from my true thoughts and trying to preserve my own decorum as that's what I automatically reverted to- wasn't that the proper way to act in public? Here's the really annoying thing though, none of that really helped me. What really helped was the times when I spoke the unfiltered truth and had a real good cry. When I told my parents I loved them and that I was angry at the world that they wouldn't be around. When I talked about how I could see them becoming weaker to my brother and sister- using the medical experience I had to prepare them but also it gave me the support I needed from them as they recognised this was difficult for me to discuss. Sitting helping my mum eat her dinner and the two of us giggling about how she had once done the same for me as a baby- one of the most tender moments I will ever experience and entirely due to both of us being honest about the way life changes. There are many things I wish I hadn't kept to myself, many things I wish I had said exactly as I had prepared them in my head. Maybe it was the daft notion that men are meant to conceal their emotions, where does that get us?  Awkward hugs with our dads, never saying "I love you", pent up anger and unexplored grief. 

C.S. Lewis writes beautifully about human emotions. There is a verse in " A grief observed" that describes the tensions above so well. The physical reaction and anxieties razed within us when we face death and dying conversations. Scared to say what we feel, inner tension, swallowing our words:

There is a lot to be said for speaking your mind, for being true to yourself and accepting your own emotions as original. When it comes to talking about dying and death we only get one chance to get it right. We owe it to ourselves and others to be more open to sharing our true feelings. Words such as death and dying shouldn't  be pushed to the shadows in society. They are after all only words. It is the pain and grief surrounding dying that we naturally shy away from yet we will all experience this- we all have this is common with one another.

As a society we need to recognise how difficult the current depiction of death and dying can make these conversations for us all. This does not need to be a depressing or morose focus but instead, an acceptance of these experiences as part of what makes us human. As humans we appear to be the only species on earth that has insight into our own mortality. A more honest approach to difficult times in our lives may make it easier for us to talk and heal, communication is how we all learn and ultimately become closer to really knowing who we are.

So next time you are watching a film and the star says or does something that really resonates with you, take a moment and reflect. You may find all they have done is act in a way you once really wanted to but held inside. At that moment they are being true to themselves and taking a risk by abandoning the emotional restraints put on them by society. Being genuine takes courage but you might find you help others more than you ever imagined.

Mum, Jim, Colette and me at St Margaret's hospice 2019