When we don’t talk about death, we stop talking about life

Alan shares his story and discusses why we must strive to tackle the natural fear of dying.

Alan is a member of the Transforming Care After Treatment programme’s Cancer Experience Panel. The Panel has worked hard over the past four years to ensure the voice of patients and carers becomes an integral part of decision-making in developing and operating services for people who have experienced cancer.

‘I’m dying but I’m really happy.’

Firstly, I’m not dying.
But my dear friend John was when he said those words.
And die he did, but right up to the day he died he stayed damn true to his word. He was one of the happiest people I’ve ever met.
I know because I shared a lot of that happiness with him.

The death of John, from prostrate cancer, closely followed that of my wife Louise, from a rare form of bone cancer. What both of these wonderful human beings showed me was how ill-equipped as a society we can be in understanding the nuances of death, the practicalities of what happens — and the importance of better knowing the primary needs of the individual as the end of life journey is followed. We simply don’t know enough about what it means to have a good death, how to enable that, or how to make sure someone can be happy when dying. All of this is possible.

It’s important that we are able to talk about death because, obviously, we will all experience it. And talking about death is important, because it means we’re talking about life.

John told me that when he knew he was dying, when faced with his mortality, ‘you see life as you should see it.’ (this link will take you away from our website). But despite all the problems of his illness, he felt that he was at the happiest point of his life. In part this was because every moment had an added importance, so he simply focused on doing what he wanted to do. And in John’s case, it was running the charity he had started after his diagnosis, Climbers Against Cancer (this link will take you away from our website) or CAC for short. Despite the inevitable and imminent end to his life, the way he faced his fate enabled enabled him to live life with a smile and not a frown.

We often spoke about his death and he asked me often about Louise’s. We did so because John wanted to try and understand what was likely to happen to him, and what’s happened before to people in the same situation. Therein lies a fundamental need. Because what happens when people don’t understand, when they are scared, when they are confused? What happens if you don’t know? Where do you go to find out and who should you trust? Google is one trusted place, or maybe it’s a friend who had a friend. But both can and often do deliver the wrong information, resulting in profound, unnecessary distress and anxieties at a times when it is least needed.

So another need if for us to provide trusted guides that can deliver the right information, at the moments information is most needed, and we need to make sure people know how to find these guides.

Life is an incredible thing, which sounds trite, but I say it because I have experienced death. I recognise the preciousness of life. I believe that we should strive to protect and enable it (though not at the cost of personal dignity) and I know no-one truly wants to leave life if they have the mental and physical good health and well-being that most people are blessed with. Sadly, not everyone does have this.

I know John didn’t want to die, because he had much more that he wanted to do. And neither did Louise. What both held in common was a desire to be happy, to live their life as pain free as possible and to spend their time as they wished and planned. Listening to and understanding this, meant those delivering the care they needed knew what to do to enable it. And for them, it built trust because it recognised the importance of their voice, empowering them to determine where possible their own journey.

If we accept that all life has a natural end, though cancer and other chronic illnesses may not seem a natural end, why don’t we talk about death more openly? Why don’t we approach death with the same well-designed pathways that we apply to the beginning of life and the services we use during our lives? There lies an opportunity for us to do more.

We readily talk about fighting, battles and beating, despite inconceivable odds, chronic life ending illnesses. Though these are not the words that should always be used. We write and report about new procedures and advancements in medications that can preserve life against them, that can hold death at bay for a while longer. We less often talk about the consequences of these drugs and treatments and whether we should. We talk, listen and read about these things almost every day. We share the heartfelt stories of loved ones and strangers across the channels we communicate through. Their stories touch us.

But mortality and the fact that these are often a journey towards the end of life, tends to be placed to one side. We can and should be using these conversations to do more. We are not immortals. And these stories are powerful tools.

The novelist Diana Athill is an advocate for the need for us to normalise conversations around death and has often written that death is the most natural part of life. She draws a visual metaphor to illustrate her thinking ‘Even mountains have a beginning, they come up to their best and then they wear away and they die’ it captures the essence that everything living follows a cycle, that it’s the pattern of how life works and if it didn’t work like this, who knows where we’d be. She concludes ‘Death is the most ordinary thing in the world, why be frightened of it?’

But death does frighten us. To many it remains as uncomfortable as staring at the sun. We need to recognise this and address these feelings because quite simply, endings matter.

And we need to appreciate that just because you acquire a terminal illness,
‘It doesn’t mean you stop being yourself, it doesn’t mean you stop living.’ That’s the way Louise’s described it.

The journey to the end of our life matters.
Understanding where that journey starts matters.
Being empowered to ask what is needed for this journey matters.
Knowing what to ask about the journey matters.
Being guided as to how long the journey may last matters.
Knowing at what points we may need help matters.
Lots of things matter, when you’re reaching the end of your life.

For those on this journey, individuals, carers, family and friends, and those delivering the care, there is a need to better understand what matters, share why it matters and do better when it matters. Not everyone will be as health literate as Louise was, so they will need better appreciation of their circumstances. There is much work to be done.

As Atul Gawande has spoken of many times, knowing ‘What a good day looks like’ from the person’s perspective, transformed his practice of medicine. It’s a simple but powerful question that can help us steer the important work that is happening around end of life care.

Appreciating what made a good day for Louise, in her final months made all the difference to her quality of her life, to the time we all had with her. And there were many beautiful things that came from this that made Louise very happy.

Her blog (this link will take you away from our website) that she created to help others went global and posts such as Terminal and Saying Goodbye, had particular resonance with many. Louise was particularly pleased that someone in Nepal was reading the blog as that appealed to her love of travel. A BBC documentary ‘Alive in the Face of Death’and a photoshoot with Rankin followed because of the blog, and another BBC documentary ‘Advice from edge of life’ which she made two weeks before her death enabled her story to be shared further. In between and most important of all to Louise were many precious moments with dear friends, her beloved parents, as well as curling up with her cat Xavier and watching trashy TV. That’s what mattered to her most.

Like John, Louise also faced her fate full-on, and in so doing was empowered to live her final days as she wanted. But there were still questions unanswered, How long do I have? What happens near the end? A fear of a painful death. These are difficult questions to answer and they had implications on so many levels for many of us close to her. Louise also spoke of her pain, the fact that when you love people the last thing you want to do is hurt them.

‘I’m not a special person, for me there’s no point wasting my time being sad and depressed, thinking poor me. The things that I can’t do anymore. Depression and self-pity I don’t need. I just want to keep living my life. It’s not rocket science, but it’s important.’

Do we really understand these feelings? Are we fully empathetic of the person’s situation and choices? Have we really thought what end of life means when explained this way?

We must strive to tackle the natural fear of dying and replace that with knowing what will facilitate the the joy of living.

Alive in the face of death, chimed with what Louise was trying to say, ‘just because you acquire a terminal disease or whatever, it doesn’t mean you stop being yourself it doesn’t mean you stop living’. That’s the way she looked at it. After years on cancer and surgical wards. ‘I’m not trying to impart some new kind of wisdom, but focus on the simple things to think about — remember to appreciate what you have whilst you have it. Remember to be alive every day and enjoy your life every day. If there is a part of your life that is not working or making you unhappy, you should really think about that.’

Healthcare has changed a lot over the last few years and there are some tremendous programmes now looking more closely at the needs of people. Open and safe spaces are being created for dialogue. People are listening and listening will drive change.

Tomorrow marks 5 years since Louise died, and five years on it is still hard to avoid those last few months, days and hours, the sudden deterioration, the long night and morning. Wanting to stop time, but not being able to.

Sharing Louise’s story, and in part John’s, is important because their voices enrich the conversation, help us appreciate different contexts and could be the keys that help reveal what makes a good day for many others on the journey. They help us understand the journey better by challenging negative perceptions of death.

Their voices and stories should not be forgotten, they are still here to help us but we need more if we are to know how to create better pathways for us to walk along together. At the heart of it all is the truth that people know their life better than you, we need to recognise this and enable them to have the most important input in any conversation. This is what underpins human-centred care.

We must never lose sight of what being human means and what it means to be dying but happy.

Emma Louise Page died on 19th May, 2013. She is remembered with love by many.

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