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Living the best day ever

This is a cross-post of an article that I wrote for the Africa edition of ehospice news reflecting on the lessons learnt from Hendri Coetzee’s book ‘Living the best day ever’. 

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Palliative care, by definition, is both a science and an art form that involves accepting the reality of death. What you have left when you accept this is what the profession calls ‘preserving or improving the quality of life’.

Never before though, have I been challenged to re-examine the concept of ‘quality of life’ than when reading Hendri Coetzee’s book: ‘Living the best day ever’.

Hendri Coetzee was a South African living in Uganda perpetually searching for the best day ever. This search led him to become a legend throughout the extreme sports and exploration world.

In 2004 Hendri led the first ever complete descent of River Nile from source (Lake Victoria) to sea (the Mediterranean). The 4,160 mile trip took four and a half months and crossed two war zones.

Coetzee was also the first person to run the rapids above the Nile’s Murchison Falls, a section of river filled with some of the biggest white water in the world, and holding one of the highest concentrations of crocodiles and hippos.

He would go on to complete this section of river a further seven times and he remains the only person ever to run the section by himself. He also ran large sections of the upper and lower Congo River, walked 1000 miles along the Tanzanian coast and was the first person ever to snowboard the glaciers in the Ruwenzori Mountains.

In short, his résumé was one of the most impressive in the business.

It was not, however, his outlandish adventures that makes Coetzee’s book such a challenge for anyone to read, but his burning passion for life. Deep within all of his adventures was an intertwined journey to accept the fullness of life – to be able to appreciate it to its full. Only by understanding and ultimately accepting one’s death, Coetzee believed, can we truly experience a ‘quality of life’.

Speaking to some, and by no means all, palliative care patients I have come across a stillness – a deeper happiness – that I have rarely seen elsewhere. It is a happiness that comes fundamentally from within, a spiritual or psychological wellbeing.

Does this come from an acceptance of one’s own death?

Early on in the book, when undertaking the Murchison Falls section of white water, Coetzee writes: “In our society we avoid the thought of death as if recognition alone could trigger the event. Thinking about your own death is seen as a sign that mentally, all is not well. Some people live their entire lives with the sole purpose of minimising the chances of it occurring to them, instead of preparing for the inevitable. After avoiding the issue for so long, it is almost soothing to invite death on my terms.”

Reflecting on this, I wonder how many palliative care practitioners spend their professional hours encouraging patients to think about their deaths, to make preparations and to become comfortable with the idea whilst then perpetuating the myth in their own lives that life is infinite?

I only speak for myself when I write that I am too often guilty of this self-delusion.

To live a truly high ‘quality of life’ do we have to be comfortable with the idea of our death? I don’t know.

For Coetzee though, this acceptance was clearly linked to the life he chose to lead. Writing about his desire to keep going on clearly dangerous expeditions he wrote: “Psychoanalysts may diagnose a death wish, but missions like these enhance the appreciation of life. It is no coincidence that death and rebirth are related in all forms of religion and spirituality. When you accept that you are going to die, and it will be sooner than you think, it becomes impossible to merely go through the motions.”

Even the acceptance of my own inevitable death cannot push me to actions that so invite the prospect of death earlier than it otherwise would arrive. There is too much to live for to put my life on the line in search of living just that one day to the extreme – in the search for the best day ever.

That said, it is imperative for the palliative care community to understand the full spectrum of thought that exists out there. Just as there are people who are terrified of the concept of their own passing so there are people like Coetzee that can write the following words:

“Death is coming for us all…the day we will have to face the crossing will come sooner than we think. I hope my day is many many years away, but… I don’t want to make the greatest leap in life in a vague dream. I want to have the chance to look it in the eye, to say: ‘You have had me in your sights all your life, but it’s on my terms that I come.’ Tibetans believe that one can find enlightenment at the moment of your death, as long as you prepared yourself for it during life…I have had the best day ever more times than I remember. So yes, I believe I am ready to die if that is what is needed to live as I want to.”

Hendri Coetzee was pulled from his kayak by a crocodile deep inside the Democratic Republic of the Congo and his body was never recovered.

At the end of his last ever blog entry though, after completing a section of river that many assumed impossible to kayak, he wrote: “We stood precariously on a unknown slope deep in the heart of Africa, for once my mind and heart agreed, I would never live a better day.”

I have no idea if – when it came – Hendri Coetzee was prepared for his death. It is clear though, that he lived life to the full and died in way he had to have expected.

Not many of us can say that and for that alone ‘Living the best day ever’ is worth reading. I think we can all learn something from Hendri Coetzee approach to both life and death.

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Book review: ‘The Unlikely Pilgrimage of Harold Fry’ by Rachel Joyce

This is a copy of a book review I wrote for the UK edition of ehospice news.

Harold Fry
If ever a fictional book has illustrated the importance of ‘spiritual care’ as an integral part of palliative care, it is Rachel Joyce’s debut novel, ‘The Unlikely Pilgrimage of Harold Fry’.

Joyce’s heart-warming novel charts the unlikely story of Harold Fry. Harold is a retired Englishman who embarks on 600 mile walk from Devon to Berwick to visit an old friend who is dying of cancer. The walk, or pilgrimage, increasingly becomes interlinked with Harold’s own grief and spiritual pain as he becomes convinced that by undertaking such a walk he can not only keep his old friend alive, but also repent for the mistakes he has made in years gone by.

Although Harold’s friend Queenie is in a hospice with terminal cancer, the reader only gets brief glances at the physical, spiritual and social pain that she is experiencing. Joyce alludes to a lack of family or friends but this, it feels, is only mentioned to add impetus to the protagonist’s pilgrimage.

Indeed, it is Harold, and at times his wife Maureen, who the reader becomes best acquainted with. On a base level the reader begins to empathise with Harold’s tortured emotions towards Queenie and this only heightens throughout the walk.
From the beginning of the walk and the book the reader is aware of a pain lying just underneath the surface of Harold. Only as the walk, or as Joyce sometimes refers to it, ‘the journey’, develops do we begin to understand the nature and severity of Harold’s pain. Throughout the book one cannot help but draw parallels between Harold’s journey and other patient’s journey towards death.

What stands out in this novel though is the way Joyce cleverly explains to the reader how pain goes so much further than just the pain experienced by the patient. Friends, family and, of course, colleagues can be, and often are, effected by death and the process of dying.

Using this holistic understanding of pain, understanding it as more than just physical but also spiritual and social that can and does impact on friends and family as well the patient, Joyce takes the reader on a powerful emotional journey that is sadly too often out of reach in other novels that touch on issues related to death.

Using Harold’s well-being as an extended metaphor Joyce cleverly intertwines Harold’s hopes, emotions and fears with those of the readers and lets you experience the trials, tribulations and triumphs of Harold’s walk.

The context of which this journey is undertaken – the quintessential English landscape – is, I believe, mistaken by many as being the central theme to the book. Indeed in the reviews published on The Guardian or The New York Times, the life-affirming story and the societal implications of what it means to be ‘English’ or ‘Spiritual’ in the 21st century are drawn out as key themes.

For me, these were side-issues all playing in and relating to how we understand death and the role someone’s spiritual pain can play in that process. I took from the novel, and I believe this was intended as a key theme, the universality of spiritual concern and pain – something which palliative care practitioners have been advocating about for a number of years now.

This is illustrated in the fact that the issues around spiritual pain are shown from the perspective of an atheist (Harold). Regardless of religious beliefs we all have the potential to feel spiritual well-being and of course, pain.

Even when faced with the ultimate twist in the final chapters Joyce still refuses to deviate from what I felt to be the core theme of the book – Harold’s deeply personal anguish and how this not only impacts on those around him, but also on his own ability to be at one with himself.

‘The Unlikely Pilgrimage of Harold Fry’ remains one of the few fictional books I have read that deals with spiritual pain around dying adequately. This is not to say it deals with these issue comprehensively, merely that it acknowledges it to be a central part of what it is that makes us human.

It is perhaps this unlikely source of shared humanity that makes this first novel such a triumph and pleasure to read despite the difficult subjects it addresses.

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Integrating palliative care into international human rights mechanisms

To mark World Human Rights Day (10th December) I wrote this article for ehospice about the importance of integrating palliative care into international human rights mechanisms. 

logo_460x88As we celebrate Human Rights Day we should take a moment to reflect on the millions of people around the world who are suffering from excruciating but ultimately preventable and manageable pain because states have not set up systems that meet and respect their basic right to health – their right to palliative care!

Palliative care is defined by the World Health Organisation as: “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

Human rights and palliative care are in many ways natural partners. Both are based around the dignity of the individual being applied universally and without discrimination. But they also overlap. Not only is palliative care a human right in itself, it also allows for the fulfilment of other rights.

Without good palliative care, people can become imprisoned in their own homes. Trapped by the burden of disease symptoms including pain making them incapable of accessing education, health, transport or other basic elements of life that most of us take for granted. These are elements of life that we all have a right to.

Read the full article here >>>

 

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