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drcolumbosnotepad · 7 years

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Being Mortal | When Breath Becomes Air | How We Die

The Fighting Temeraire - J.M.W. Turner

Introduction

Prelude III: Mortality – Santiago Wu

At the break of dawn begins a new day,

Now I am one with the world,

To be part of something greater, I pray.

All of us part of the same mystery unfurled.

Time past and time future,

Everything that came before,

To everything that follows.

All my love to long ago,

And my hopes for days to come.

Heart selfless, soul mindful.

Live, laugh, love —this the meaning of life?

My candle burns at both ends.

All the places I’ll never see,

All the people I’ll never know.

This might be how it ends.

Memento Mori - Remember that you have to die.

Vanitas – Philippe de Champaigne

Death is inextricably entwined with life, hidden in the shadows patiently waiting to take us on the day we take our last breath. Reading the accounts of dying men and women is truly humbling, whether it be in their twilight years or prematurely - death comes for all of us. All their stories and memories of human life and emotion: all the joy, love, laughter, tragedy, sorrow and regret willing us all to live more fulfilling, meaningful lives.

If I were a writer of books, I would compile a register, with a comment, of the various deaths of men: he who should teach men to die would at the same time teach them to live.

That to Study Philosophy is to Learn to Die – Michel de Montaigne

I think you always know the moment when you finish a book whilst digesting the last words and the text as a whole, its impact and importance in your personal life. The books I am writing about all discuss mortality – a taboo topic normally hushed about and swept underneath carpets. To read and understand the writings of these books in such a raw and honest fashion was a welcome albeit overwhelming change in gear. These books have had a massive impact personally and have formed an epoch in my life and attitudes to life and death. Being Mortal by Atul Gawande When Breath Becomes Air by Paul Kalanithi and How We Die by Sherwin Nuland are books which have the rare privilege of being read more than once, truly understood, annotated to grasp every fragment of detail of wisdom shared in their pages. The authors are doctors (American surgeons, all sons of immigrants). These men had the privilege and the burden of looking after and treating people with fatal illness in their daily practice. Their accounts are beautifully written, one from the perspective of a doctor looking after patients in their end of life and the other written as a patient facing his own death and one written in his twilight years recounting his medical practice and patients and sickness and death. I have heavily quoted all three books because I believe they offer profound wisdom which is literally life-affirming, in fact I have written this for myself as much as my reader in order to truly understand the essence of the lessons of what these three books and their themes can teach us.

I was first introduced to Atul Gawande from the 2014 Reith Lectures on BBC Radio 4 which were a series of four excellently given speeches on life, death and medicine. His deep research on medicine for the dying draws upon many different threads with a surgical precision. His striving to be better and to constantly improve is remarkable and sets a paragon of medical practice. I was humbled by his admissions and failures and his striving to be a better surgeon. The lectures provided a grounding to my burgeoning clinical experience and taught me to never take anything for granted – never to be complacent of my abilities because to have another human being’s life in your hands is a huge privilege which some say is playing god with a small ‘g’. He understands the fine line between offering false hope and deciding when to cut your losses which is never a clear choice. I immediately related to Paul Kalanithi’s love of literature. It is rare in medicine to meet someone who loves literature so much – stories of humanity, emotions ranging from highest peak to lowest ebb… I can tell this deep affection directly influenced his writing and indeed his medicine and approach to life. What made him unique was his relentless quest to search for life’s meaning. With his juggling of both art and science, I immediately remembered my own decision for choosing to enter medicine. Art reflects the universe whilst science explains it. Medicine married the two together. Though in modern medicine, science is king – like Paul Kalanithi, I have a strong affection for my first love of literature which I’ve come to realise expresses and sometimes even explains the universe in better ways than science can. Sherwin Nuland’s ground-breaking book How We Die has been mentioned in circles of medical humanities and referenced by Atul Gawande as the quintessential book on the medical viewpoint of death and mortality. It is easy to see why this book, though nearly thirty years old is still as relevant as ever today. The art of medicine has been revolutionised and become more efficient by multiple progressions and innovations in science and technology but at its heart remains the doctor-patient relationship which Sherwin Nuland writes about in a philosophical and humane way. He marries both medical science and the stories of his patients which from a medical point of view was an utter joy to read. Funny how things have changed since 1994 when Sherwin Nuland wrote his book and also how much they remain the same – sobering to know how despite our scientific and technological advances in medicine, our attitude towards death and dying patients is still primitive and myopic. In How We Die, Sherwin Nuland details the most common causes of death in the developed countries: cardiovascular disease, old age, stroke, infection, murder, HIV/AIDS, cancer in individual chapters with case studies based on his own patients or his family members.

The theme of death and mortality explored in these books led me to think a lot about them especially in my early medical career. When I first started this blog, I wrote of great figures in human history that have sadly left us and their medical conditions. From a great fighter to an entrepreneur to a musician, all were unique human beings with different qualities but what united all of them – and also us, is death. Death is something that is often misconstrued in our modern lives, whether we euphemise, sugar-coat or indeed fear it. The old saying of De mortuis nil nisi bonum or ‘Do not speak ill of the dead’ and Requiescat in pace or ‘Rest in Peace’ pervades our lives even today. We feel sadness when great figures die because of the finality of death – there is no return, we will never know what would have come next. We are reminded of our own lives and within our limited time we too are able to achieve something great. Of course, it is foolish to be able to condense every reference and understand them completely, that will take more than a lifetime to study, a Sisyphean task – death and ars moriendi (the art of dying) being perhaps the biggest and most universal theme of human life across all cultures. There are still works by Heidegger, Nietzsche, the Bible, the Tibetan Book of the Dead, I Ching, the Mahabharata, the Vedas, the Quran, countless poets, novelists, philosophers, scientists etc. that I haven't been able to read in this time, this of course is a study over generations upon generations who still are uncertain about the question of death. I cannot answer these questions death poses, there are mountains upon mountains I will need to ascend in order to catch the slightest glimpse of an understanding. I myself cannot even expect to offer the slightest bit of eloquence of my own voice – I elect instead to let great men and women do that for me for may I learn from them and one day pass on this knowledge. After spending the past year contemplating on death and mortality and reading around the topics from great accounts by humanity, I am certain that what this teaches us is the appreciation of life now in the present. None of us knows when we will die, only we know for certain that we will die. In our cycles of time, this is our time on Earth, our time to live. How we come to peace with death and our mortality is focus of these books I have mentioned and the lessons we can all learn from them.

As I child, I had devoured the Roald Dahl books like any other kid in school I loved his dark wit and unpatronizing creativity in his novels where they provided the first forays into my love for books and imagination. One thing always struck me in his books that I never truly understood until my youth, was his motto that preceded each and every one of his novels. I had a much loved, battered double copy of Charlie and the Chocolate Factory & Charlie and the Great Glass Elevator which I had read several times over. The motto that perplexed me well throughout my childhood was:

My candle burns at both ends it will not last the night. But oh my foes and ah my friends, it gives a lovely light!

How apt of Roald Dahl! Even in children's novels he never hid death from them – didn't the twits shrink away into nothingness and didn't James' parents get squashed by a rhinoceros? It's a beautiful motto, the transience and beauty of life condensed into four lines. When I look back over my life, over petty arguments, being let down and hurt by others, showing loved ones my worst side – I am deeply humbled. Life is short, I don't want it to be marred by acrimony and bitterness and regret. Those are the things that don't matter, the bitter pill you stow away at the back of the mind to learn a cruel lesson from and yet cringe at who you could be and hopefully were. There isn't room for such sourness, when you read the accounts of the dying – there is often the bittersweet feeling of regret and missed opportunity as seen in Top Five Regrets of the Dying by Bronnie Ware, a palliative care nurse.

https://www.theguardian.com/lifeandstyle/2012/feb/01/top-five-regrets-of-the-dying

Here we must focus on the important things – the old sayings of ‘letting the little things go’, and ‘don’t sweat the small stuff’ are true. Do we hold a grudge to everybody who has wronged us? If that’s the case then we’d only hold a grudge to everybody because as Bob Marley said “The truth is everyone is going to hurt you. You just got to find the ones suffering for.” Life is too short for all of the pettiness and trivialities. Forgive and love, it’s the best antidote to bitterness and the best steps to self-love for through only loving ourselves can we love others.

Wherever your life ends, it is all there. The utility of living consists not in the length of days, but in the use of time; a man may have lived long, and yet lived but a little. Make use of time while it is present with you. It depends upon your will, and not upon the number of days, to have a sufficient length of life. Is it possible you can imagine never to arrive at the place towards which you are continually going? and yet there is no journey but hath its end. And, if company will make it more pleasant or more easy to you, does not all the world go the self-same way?

That to Study Philosophy is to Learn to Die - Michel de Montaigne

The Starry Night - Vincent Van Gogh

Medicine and death

The Doctor – Sir Luke Fildes

“To me, the subject will be more pathetic than any, terrible perhaps, but yet more beautiful.”

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be.

We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

The field of palliative care emerged over recent decades to bring this kind of thinking to the care of dying patients. And the specialty is advancing, bringing the same approach to other seriously ill patients, whether dying or not. This is cause for encouragement. But it is not cause for celebration. That will be warranted only when all clinicians apply such thinking to every person they touch. No separate specialty required.

If to be human is to be limited, then the role of caring professions and institutions – from surgeons to nursing homes – ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.

I never expected that among the most meaningful experiences I’d have as a doctor – and, really, as a human being – would come from helping others deal with what medicine cannot do as well as what it can. But it’s proved true, whether with a patient like Jewel Douglass, a friend like Peg Bachelder, or someone I loved as much as my father.

Being Mortal – Atul Gawande p259-260

Having the medical perspective of death is something strangely inhuman. The first death with everyone is upsetting and everyone reacts in their own way. Yet witnessing death on a daily occurrence begins to offset this shock to the system, becoming a routine to which medical professional need to learn how to cope with death. Doctors and nurses in A&E departments don’t stop with each death, rather they move onto the next pressing case to attempt to succeed where they failed before. Paramedics share dark humour about death and gore in order to deal with what they see every day. Porters transporting the recently deceased to the morgue don’t cry over the tragedy. Pathologists inspecting the corpses of patients to determine a cause of death don’t become overwhelmed with grief. This desensitisation to death is a double-edged sword, it allows us to function when it should overwhelm us with grief yet does it detach us from our common human empathy, forgetting or indeed denying to ourselves what it feels like? Indeed, I remember my first deaths I saw as medical student, I have always been too guarded and perhaps too detached to cry but the spectre of death haunted me where I felt its presence after seeing a failed cardiac arrest or whilst on an ambulance shift seeing an old man surrounded by his family slowly stop breathing until there were no more breaths. Often, I have reminisced and dreamt about these experiences, I still remember them freshly and yet I still do not know my own thoughts and feelings on them.

As Atul Gawande shows in the second chapter aptly named Things Fall Apart – named after the Chinua Achebe novel which consequently was named after a line in the W.B. Yeats poem The Second Coming ‘Things fall apart; the centre cannot hold;’ When we look at death as a cross sectional timeline we tend to map it in certain ways.

The first is the classic model of how we perceive our lives and death. The classic timeline of good health until old age – when health begins to deteriorate until death.

Advances in medical practice have allowed for previous fatal chronic diseases to be treated and hence the ebbing and flowing of improvements and exacerbations in health until senescence takes place. As each second becomes a minute, as each minute becomes an hour, as each hour becomes a day, as each day becomes a month, as each month becomes a year, as each year becomes a decade, we are all ageing with time. Senescence is defined as biological ageing – the gradual deterioration of function. If disease does not take us, then old age surely will.

The third graph Atul Gawande shares with us is the graph of old age, so often medicalised given the plethora of diseases that occur in one’s twilight years. Old age and dying is the primary subject matter of his book where our medical fiddling of patching over the punctures of disease becoming a long, slow fade towards death. How then can we prepare for the inevitable? With every new wrinkle and grey hair, we know we are inching towards old age. With the 150,000 people who die on earth each day, two-thirds are due to old age. In essence, it is a miracle that medical progress has taken us this far, as proposed by Abdul Omran an epidemiologist, quoted by Dr Jonathan Reiner in Dick Cheney’s book Heart, there are three progressive stages of population longevity in the USA: age of pestilence and famine, age of receding pandemics, the age of degenerative and man-made diseases. In our modern age, instead of infectious diseases being the predominant source of mortality in developed countries with the dawn of scientific breakthroughs such as vaccinations and nutritional improvements, this modern post-industrial age presents itself with ischaemic heart disease as the number one most common fatal disease – our new sedentary, calorific lives alongside the meddling of tobacco companies have surely contributed to this. Indeed, as Montaigne wrote in the late sixteenth century. “To die of age is a rare, singular, and extraordinary death, and so much less natural than others: it is the last and extremest kind of dying”. During Montaigne’s time the average life expectancy was nothing to the years we clock up in our modern times with the average age of death now in the UK as 81.60 years.

DNAR stands for Do Not Attempt Resuscitation, it is a form filled out that I have seen in hospitals for patients who are approaching the end of their life or if they are about to have a high risk procedure. The number of times I have seen the form filled out is countless and seeing it from the doctor's perspective as a medical necessity but seeing it from the, often, elderly patient's perspective you note a sign of resignation, fear and sadness. For these patients, they are forced to confront with what might be the end. Patients who are dying will often grieve over their borrowed time left.

The desensitisation of the significance of death from being in the medical field is an odd feeling. When something becomes routine, we become normalised to it. Countless times I have seen doctors and nurses, sign away the paperwork and send the patient to the morgue. My first time seeing someone die was indeed difficult – a cardiac arrest but there’s now a commonplace lack of novelty around death I have often wondered if I was losing my humanity.

I had started in this career, in part, to pursue death: to grasp it, unclear it, and see it eye-to-eye, unblinking. Neurosurgery attracted me as much for its intertwining of brain and consciousness as for its intertwining of life and death. I had thought that a life spent in the space between the two would grant me not merely a stage for compassionate action but an elevation of my own being: getting as far away from petty materialism, from self-important trivia, getting right there, to truly life-and-death decisions and struggles… surely a kind of transcendence would be found there?

But in residency, something else was gradually unfolding. In the midst of this barrage of head injuries, I began to suspect that being so close to the fiery light of such moments only blinded me to their nature, like trying to learn astronomy by staring directly at the sun. I was not yet with patients in their pivotal moments, I was merely at those pivotal moments. I observed a lot of suffering; worse, I became inured to it. Drowning, even in blood, one adapts, learns to afloat, to swim, even to enjoy life, bonding with the nurses, doctors, and others who are clinging to the same raft, caught in the same tide.

When Breath Becomes Air P80-2

This level of detachment I see from colleagues is understandable when we realise the alternative is to open ourselves up to our patients’ pain where we share their grief and predicament. The sheer heat of emotions we experience will also cloud our judgement that we may not be able to serve others who need our care in the best possible way. I remember a session on being taught ‘breaking bad news’ to patients where one horror story came from the doctor breaking down in front his patient and was in turn comforted by the very person he was meant to comfort. The abode to be cruel to be kind is commonplace in medicine, administering a vaccination to a young child, inserting needles to take blood from patients, using scalpels to open the flesh in surgery. There’s a lot of pain in medicine and being swamped and desensitised to it, to an outsider looking in, may see us as cold or inhuman. Indeed, I believed that too as a young medical student but now I realise, it’s just the only human response we can have.

But it is so very difficult to tell your patient that there is nothing more that can be done, that there is no hope left, that it is time to die. And then there is always the fear that you might be wrong, that maybe the patient is right to hope against hope, to hope for a miracle, and maybe you should operate one more time. It can become a sort of folie à deux, where both doctor and patient cannot bear reality.

…

I have learned over the years that when ‘breaking bad news’ as it is called, it is probably best to speak as little as possible. These conversations, by their very nature, are slow and painful and I must overcome my urge to talk and talk to fill the sad silence.

…

I drove away in a turmoil of confused emotions. I quickly became stuck in the rush-hour traffic, and furiously cursed the cars and their drivers as though it was their fault that this good and noble man should die and leave his wife a widow and his young children fatherless. I shouted and cried and stupidly hit the steering wheel with my fists. And I felt shame, not at my failure to save his life – his treatment had been as good as it could be – but at my loss of professional detachment and what felt like the vulgarity of my distress compared to his composure and his family’s suffering, to which I could only bear impotent witness.

Do No Harm – Henry Marsh P151-3

It is a horrible feeling, that somebody’s life is ruined and is at its near end, but we still have patients to treat, our own lives to lead and life goes on…That is the burden of our professional detachment. It’s a delicate fine line to balance upon, I do not suspect that doctors signing DNAR forms find it easy – whether they empathise with the patient’s resignation or whether they are starkly reminded of their own mortality. It is never easy, but the only way is to keep moving forward.

In the medical field, we have the enormous privilege of being with our patients in their lives from cradle to grave – at their strongest but also at their weakest, where the fear of their lives are in our hands. We are bound by a sacred confidentiality to protect our patients and our duty upheld by the four pillars of ethics: respect for autonomy, benevolence, non-maleficence and justice.

Sometimes it is forgotten the fear of what patients go through whether it be a simple medication, routine operation, or terminal diagnosis. The Kübler-Ross model is an oversimplified form of the stages of grief that patients will go through when faced with a terminal diagnosis though not necessarily in this order:

Denial

Anger

Bargaining

Depression

Acceptance

Although oversimplified, the stages give an indication and ballpark figure to gauge what emotions patients are feeling during this difficult time. This is a difficult time for all involved, one of the most if not the most testing time in our lives. This is because we are confronted the cruel finality of death. There won’t be another story following this, this is it – the final chapter. Atul Gawande interviews various medical professionals working in the field of palliative care – the specialty of terminal end of life care. Both Atul Gawande and Paul Kalanithi mention how doctors can bombard patients with information in order to provide informed consent – as both authors say “Doctor informative”, yet both realise the limitations of this approach where the anxiety of patients can be exacerbated by flooding of information when they still do not know how to compute the diagnosis just given.

The options overwhelmed her. They all sounded terrifying. She didn’t know what to do. I realized with shame, that I’d reverted back to being Dr Informative – here are the facts and figures; what do you want to do? So I stepped back and asked the questions I’d asked my father: What were her biggest fears and concerns? What goals were most important to her? What trade-offs was she willing to make, and what ones was she not?

Not everyone is able to answer such questions, but she did. She said she wanted to be without pain, nausea, or vomiting. She wanted to eat. Most of all, she wanted to get back on her feet. Her biggest fear was that she wouldn’t be able to live life again and enjoy it – that she wouldn’t be able to return home and be with the people she loved.

As for what trade-offs she was willing to make, what sacrifices she was willing to endure now for the possibility of more time later, “Not a lot,” she said. Her perspective on time was shifting, focusing her on the present and those closest to her. She told me uppermost in her mind was a wedding that weekend that she was desperate not to miss. “Arthur’s brother is marrying my best friend,” she said. She’d set them up on their first date. Now the wedding was just two days away, on Saturday at 1:00 p.m. “It’s the best thing,” she said. Her husband was going to be the ring bearer. She was supposed to be a bridesmaid. She was willing to do anything to be there, she said.

The direction suddenly became clear. Chemotherapy had only a slim chance of improving her current situation and it came at substantial cost to the time she had now. An operation would never let her get to the wedding, either. So we made a plan to see if we could get her there. We’d have her come back afterward to decide on the next steps.

Being Mortal P234-5

In medicine, the aim is to minimise mortality. We aim to stay up to date with research and novel techniques in order to gain a more positive outcome for all of our patients through the use of scientific data. The Kaplan-Meier curve is an estimator of survival from lifetime data. It is used in medical research, it is used to measure the fraction of patients living for a certain amount of time after treatment. In both Being Mortal and When Breath Becomes Air, the Kaplan-Meier curve was referenced citing both its usefulness but also, its limitations. The Kaplan-Meier curve is purely an estimator and the trends it gives are too general for individual cases. For instance, who's to say that our patients will not fall in the unlucky few that the trend ignores? As seen in Paul Kalanithi's account:

The word hope first appeared in English about a thousand years ago, denoting some combination of confidence and desire. But what I desired – life – was not wat I was confident about – death. When I talked about hope, then, did I really mean, “Leave some room for unfounded desire?” No. Medical statistics not only describe numbers such as mean survival, they measure our confidence in our numbers, with tools like confidence levels, confidence intervals, and confidence bounds. So did I mean “Leave some room for a statistically improbably but still plausible outcome – a survival just above the measured 95 percent confidence interval?” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average?

When Breath Becomes Air P133-4

Kaplan-Meier Curve example

Patients when faced with their terminal diagnosis usually do not want to discuss statistics and outcome data. The flawed approach of medical practice is often being in a medical echo chamber where we are within a bubble without yet realising there are patients who do not understand with what exactly they are going through. Most patients haven’t gone through medical training and are not well versed in medical jargon, the bombardment of information can flood the senses and alienate them.

Both Being Mortal and When Breath Becomes Air allude to a future of medicine that is more patient value driven. Of time becoming short and death imminent, what are your values? If you had a bucket-list - what would you place in your top 10, and which ones would you resign away and yet be okay if you didn’t get to complete them? Atul Gawande alludes to Daniel Kahneman’s fantastic book Thinking Fast and Slow which I cannot recommend highly enough. Here he refers to what is termed the Peak-End Rule where upon asking patients to recount an event whose memory has become blurred with time, what is remembered follows this rule. The ‘peak’ or the most memorable part of the event – i.e. a incredibly touching moment, a beautiful goal scored, a worst painful moment of a procedure, and the ‘End’ where we remember the concluding moments of the event. For example, during the 2002 World Cup qualifiers – I remember vividly David Beckham scoring the equalising goal against Greece to send England into the finals. The game had its moments but was a poor performance from the England team. Greece were leading England 2-1 into the 93rd minute and it looked like England were out of the World Cup. Then England were awarded a free kick, and what happened next was history. Even as a seven-year-old, my memories of watching that rather drab football match were elevated considerably in literally the dying seconds of David Beckham scoring that free kick. Atul Gawande notes the story we write ourselves – the narrative of our life. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. We distinguish our experiencing self – which is absorbed in the moment with the remembering self – recognising the peaks of joy and valleys of misery but also how the story works out as a whole. As we know from all stories, endings matter. And no more so than the ending of our lives.

In Abraham Maslow’s A Theory of Human Motivation, it is proposed there is a hierarchy of needs with basic needs for physiological survival, and safety at the bottom, above this is the need for love and belonging, and above this is the desire for growth – attaining personal goals, mastering knowledge and skills, recognition and reward for our achievements. At the crest of the pyramid of this hierarchy of needs is what Maslow terms ‘self-actualization’ – self-fulfilment through pursuit of moral ideals and creativity for their own sake. This is all good and well when we believe we are invincible – everybody wants to live forever but once faced with death – what then becomes important to you?

How we seek to spend our time may depend on how much time we perceive ourselves to have. When you are young and healthy, you believe you will live forever. You do not worry about losing any of your capabilities. People tell you “the world is your oyster,” “the sky is the limit,” and so on. And you are willing to delay gratification – to invest years, for example, in gaining skills and resources for a brighter future. You seek to plug into bigger streams of knowledge and information. You widen your networks of friends and connections, instead of hanging out with your mother. When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid – achievement, creativity, and other attributes of “self-actualization.” But as your horizons contract – when you see the future ahead of you as finite and uncertain – your focus shifts to the here and now, to everyday pleasures and the people closest to you.

Being Mortal p97

We need to discuss what is important to a patient who is dying with the utmost importance, we know what one wants at twenty will be drastically different to what one wants at sixty. Similarly, what one wants now may be completely different to six months down the line, all of this even more important now that time is running out and its finite sands trickling away.

Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.

...

“I wish things were different.”

“If time becomes short, what is most important to you?”

Being Mortal P182

We so often deprive the elderly of choice with regimented medication schedules and restriction of even going outside the house for fear of them falling of injuring themselves. Even in this age of patient-centred care, what hasn’t been realised is what the patient wants. It is this failure in health to recognise that the sick and aged have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life.

Wants are fickle. And everyone has what philosophers call “second-order desires” – desires about our desires. We may wish, for instance to be less impulsive, more healthy, less controlled by primitive desires like fear or hunger, more faithful to larger goals. Doctors who listen to only the momentary, first-order desires may not be serving their patients’ real wishes, after all. We often appreciate clinicians who push us when we make shortsighted choices, such as skipping our medications or not getting enough exercise. And often adjust to changes we initially fear. At some point, therefore it becomes not only right but also necessary for a doctor to deliberate with people on their larger goals, to even challenge them to rethink ill-considered priorities and beliefs.

Being Mortal p202

It is this independence and autonomy that gives a patient their dignity – their freedom and their choice to do how they wish. I think everyone wishes to be treated with respect and have their own freedom in their end of years, it is only human to do so. All it takes is basic human empathy to realise how we treat our elderly patients and elderly family members and friends and understand the golden rule in religion: Treat others how you want to be treated.

Medicine, now no less than then, is the art of nurturing the sick to a state of health and recognizing when it is impossible to do so. Should that be the case, ways must be found to de-medicalize the final weeks or days, to nurture the dying and those who love them, and by this means to nurture ourselves. The real truth of healing lies in the nurture.

How We Die P288

All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties.

This is why the betrayals of body and mind that threaten to erase our character and memory remain among our most awful tortures. The battle of being mortal is the battle to maintain the integrity of one’s life – to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.

Being Mortal p140-141

The Dance of Death

Unity of death

Michel de Montaigne, a figure so renowned he earned his place in history as one of Ralph Waldo Emerson’s Reputable Men thought deeply about death and mortality amongst other topics and emphasises this point with profound eloquence. His Essay “That to Study Philosophy is to Learn to Die” is a serene meditation of death and life that expresses the contemplation of death far more eloquently than I could ever do it justice.

—let us learn bravely to stand our ground, and fight him. And to begin to deprive him of the greatest advantage he has over us, let us take a way quite contrary to the common course. Let us disarm him of his novelty and strangeness, let us converse and be familiar with him, and have nothing so frequent in our thoughts as death.

That to Study Philosophy is to Learn to Die – Michel de Montaigne

Each of us is facing the same fate; all of us united in the face of death. To death, none of us knows how to react really. Yet we know it's there hanging before us, like Cicero's account of the Sword of Damocles. Nothing in life is ever guaranteed. Our memories of the past and our hope for the future. To our love to long ago and our love for days to come.

I began to realise that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

When Breath Becomes Air P132

Across all cultures from the Mexican tradition of Dia de Muertos (All Souls Day) and Hallowe’en – a contraction of All Hallows’ Evening, Chinese tradition of the Ghost Festival (盂蘭節), Pitri Paksha (पितृ पक्ष) or fortnight of the ancestors, the Japanese term mono no aware (物の哀れ) or the pathos of things. The veneration of the dead where descendants pay their respects to their ancestors is shared across all cultures, no matter the difference in our tongues.

We all strive to understand the mystery of death, where do we go after we die? Will this love survive of us? Was my life a life well spent? These questions are universal and unanswerable. The only thing we know for certain is the only time we have is in the present.

The fear in life is to live a life unspent. Regret is the cruellest wound, like in T.S. Eliot’s narrator in The Love Song of J.Alfred Prufrock, the stings of missed opportunities and paralysing neuroticism tinges the poem with the bitterness of living a life like his.

“We bones, lying here bare, await yours.” in Capela dos Ossos

Vita brevis breviter in brevi finietur,

mors venit velociter quae neminem veretur,

omnia mors perimit et nulli miseretur.

Ad mortem festinamus peccare desistamus.

Life is short, it will end; Death comes quickly and respects no one, It destroys everything and has no mercy. To death we are hastening let us refrain from sinning.

Ad Mortem Festinamus from the Llibre Vermell de Montserrat

There is our fear and loathing against death – like Beethoven shaking his fist at the thunderstorm on his deathbed, or Dylan Thomas’ plea to his dying father. How many of us have been deprived of our future and dreams by lives cut short. Life is never fair when the good may suffer and the evil may revel. We’re all victim to death’s blind snatching of us.

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Do not go gentle into that good night

- Dylan Thomas

The final monologue of Pozzo in Waiting for Godot notes the cruelty of ephemeral life and a resounding cry against death and old age in his final lines in the play:

POZZO:

(suddenly furious.) Have you not done tormenting me with your accursed time! It's abominable! When! When! One day, is that not enough for you, one day he went dumb, one day I went blind, one day we'll go deaf, one day we were born, one day we shall die, the same day, the same second, is that not enough for you? (Calmer.) They give birth astride of a grave, the light gleams an instant, then it's night once more. (He jerks the rope.) On! Exeunt Pozzo and Lucky. Vladimir follows them to the edge of the stage, looks after them. The noise of falling, reinforced by mimic of Vladimir, announces that they are down again. Silence. Vladimir goes towards Estragon, contemplates him a moment, then shakes him awake.

Waiting For Godot – Act 2 – Samuel Beckett

Such in life, what we make of it is how we live. We cannot be overwhelmed by life's brevity, from the Buddhist concept of anicca (impermanence) there is still meaning to be found in life with our families and friends and our fellow human beings. Do resign ourselves to the disillusionment with the disregard of the cosmos like Meursault in Albert Camus’ L’Etranger? We can be all too paralysed with a myopic view upon death where we creep ever deeper into the rabbit-hole of existential crisis, unable to see the wood for the trees. Being inevitable, countless philosophers and wise thinkers have argued our fear of death is pointless. There is a fine line one treads between accepting death resignedly and passively overwhelmed by the indifference of the universe or fearing death.

https://www.youtube.com/watch?v=KXxw-zXRqOs

And which of you by worrying can add a single hour to his life’s span?

Luke 12:25

Yet death is scary, it’s terrifying in fact. It’s the finality of death that makes it so powerful and why it has been feared by our ancestors generations and generations before us. Being aware of our death makes us fearful of how we wish to live, what we wish to achieve, the opportunities we see hanging before us – the most powerful impulse in our life. We cannot escape it through fear because death is the one thing we cannot run away from. Though fear remains, it isn’t the fear of the mystery of death rather the fear of what we may not be able to do, achieve, live in our limited time on Earth.

Such is the importance of the philosophy of how we decide to live our lives, whether it is through religion, philosophy, family, community etc. we need to find meaning in our lives because our days are numbered and we need to make them count.

As Matt Haig argues in his beautiful book Reasons Not To Die “We can just use it in life. For instance, I find that being grimly aware of mortality can make me steadfastly determined to enjoy life where life can be enjoyed. It makes me value precious moments with my children, and with the woman I love. It adds intensity in bad ways, but also good ways.”

Reasons Not To Die – Matt Haig

No matter how brief our lives are, we can still find beauty in its brevity like mayflies rising and falling where we can choose to make it a life well spent. I think all of us face this existential question at some point in our lives where we feel the sands of time trickling away or facing abject boredom as Heidegger describes facing anxiety over your life’s meaning: “Profound boredom, drifting here and there in the abysses of our existence like a muffling fog, removes all things and men and oneself along with it into a remarkable indifference.” It is this boredom when we feel the fear of a conditional life never spent. Boredom I feel is the directionless passivity of allowing yourself to be swept up by the tides and waves of time. That’s why it’s so important to have a purpose, values in life that can steer yourself to a destination where you want to reach. Carpe Diem as the old saying goes, “I am not throwing away my shot!,”

So teach us to number our days, that we may present to You a heart of wisdom.

Psalm 90:12

“The universe is not pregnant with life nor the biosphere with man…Man at last knows that he is alone in the unfeeling immensity of the universe, out of which he emerged only by chance. His destiny is nowhere spelled out, nor is his duty. The kingdom above or the darkness below; it is for him to choose”

Jacques Monod

Ageing and growing old

People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms.

Being Mortal p249

I’ve spoken to elderly patients in the hospital who are simply waiting, waiting to be seen, waiting for treatment, hopefully waiting for the family and friends that never visit. I’ve found myself guiltily detaching myself from the history taking after an hour and a half which I’ve allowed to go on for so long (the history is expected to be taken in less than 10 minutes) because I simply know that they have no one else to speak to, and I may be the only comfort they have in a place that’s too busy for them. It’s a pitiable state and I tried not to realise myself in their situation too much because I very much fear that – the loneliness of existence, your children not even bothering to pay a visit and the doctors and nurses too busy for you, may be me one day. I remember when I was volunteering at an elderly care home on every Sunday afternoon during my teenage years, this being the same care home my Grandmother went to during her twilight years, I always remembered the staff being especially friendly whenever we visited Granny and in volunteering there I hoped I could give something back to their support they gave her. Stepping into the care home, after a few months of volunteering a strange realisation dawned on me. I had never seen any of the residents’ relatives. Of course, this might be down to chance on a Sunday afternoon window where I may have missed them but the look on the residents’ faces betrayed that. They were always ecstatic (which admittedly unnerved me a little initially) whenever I came always eager to share their stories with me. Some weeks they would forget who I was briefly then the slow recognition of who I was as I handed over their tea. I saw the cruelty of dementia threatening to deprive them of their memories and realised then why they wanted to pass on their stories so eagerly so that they may never be forgotten. I met wonderful people there including one Joan Regan who struck me as a woman who was very beautiful in her prime. Joan recounted stories of her youth and her singing career with joy as I listened eagerly. Then one day after locking my bike and getting ready to serve the tea and biscuits, I realised that there was one person missing from the round. Joan wasn’t there. I heard from one of the nurses that she had passed away earlier in the week. The surprising snatching of life at death’s hands came once again, the void Joan left in that room was never filled again.

The specialty of geriatrics is the care for elderly patients i.e. all patients over the age of 65 and gerontology which is the study of the ageing process itself. The care for the elderly is in itself its own specialty given the increased complexity of the decreased physiological reserve the elderly have which in turn presents with increased complications with problems and disease. Many of these elderly patients are on polypharmacy – on a number of different drugs, many of which are to treat the side effects of a certain toxic effect of another, as Paracelsus said: Alle Dinge sind Gift, und nichts ist ohne Gift, allein die Dosis macht dass ein Ding kein Gift ist. All things are poison, and nothing is without poison, the dosage alone makes it so a thing is not a poison. The drugs which treat are also poisonous and hence strict monitoring of the medication is needed for fear of pushing a patient’s condition into a worse state by iatrogenic problems – problems caused by medical interference.

How we monitor the care for the elderly is measuring their activities of daily living (ADLs), a group of eight markers of basic physical independence: toileting, eating, bathing, grooming, get out of bed, get out of a chair, walking. After often a prolonged stay in hospital, the worst thing to do would be to discharge a patient unable to perform these ADLs independently and hence cause themselves further harm. A study by the University of Minnesota found elderly patients under the care of a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression. This is remarkable, and it is clear why, geriatric teams have set out especially to treat the needs of the elderly and the problems of ageing which other specialties overrun with political and economic burdens on their health systems may overlook.

…In almost none does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible.

This is the consequence of society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals – from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly – but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.

Being Mortal p76-77

The values we see in young children and values which have been handed down over the years: filial piety, mutual respect, treating your neighbour as if you wish to be treated yourself, kindness, gratitude etc. These values are old and they count for something important for they teach us how to live meaningfully. The Japanese have the terms Hanami (flower viewing) where the cherry blossoms start to bloom and Momijigari (leaf peeping) in which the flowers of summer turn into a deep autumnal maple red. There’s a dignity and great beauty in entering the autumn of our years. Such are the seasons of time, we rise, and we fall for the new generation to take its place.

In our ageing population, where in the UK over 10 million are aged 65 or over, these values have never been more important. The elderly population face the trials and tribulations of old age which is a slow frustrating taunt where you slowly become more and more aware of your limitations of your failing body. The circle of life where you are dependent as a child, growing into an independent adult at our zenith, only to become reluctantly dependent in old age. As our grandparents and parents enter their autumnal years, it is key that we are always there for them. Though they may walk a little slower, stoop in their posture, their hearing and eyesight slowly diminish, they are still our heads of our family – the wise voices from the past who have learnt from experience and mistakes as they learnt from their forefathers passing on valuable advice for us in our generation now so that we may pass it on to our future generations.

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https://www.youtube.com/watch?v=VkoDUFNRqpw&feature=youtu.be&app=desktop

The fear is being in the predicament of those poor, elderly patients I have seen in hospital all alone. I cannot help but feel an indignant anger towards their children, how they have failed in their duties as children. And how we have failed as a society that we allow the old to die scared and lonely? Have we become a less compassionate world? I see the arrogance of the young, a contempt for the old and sick by princelings and little princesses spoiled into becoming narcissists who only care for their own needs? When we evaluate how we treat our elders in society and family, our lack of empathy and the lack of dignity we give them is appalling in many cases. The medicalisation of ageing where we sedate them with drugs and try to quiet down their ‘delirium’ whilst worst of abandoning them to isolation whereby we blame their limitations on them.

https://www.youtube.com/watch?v=ww8CH62FZB0

https://www.youtube.com/watch?v=RFc19I3flJM

The elderly still have a lot to offer us, they are not castaways who no longer have any use in society – that is false. We are entering tumultuous, fearful times ahead in our world, we need their patient guiding hands to show us the way who have gone through difficult times themselves. In our age of nuclear families, we have slowly cut off from our parents and grandparents in the extended family model. This deprives us of an extended kinship that grandparents, uncles, aunts, cousins, family friends that can provide vital support to the family. No man is an island after all. Young men and women will speak with their grandparents and know that one day the same fate of ageing awaits them, a humbleness to forces greater than all of us and that we all want the same thing – a meaningful life well spent.

When we take photos, record in a diary, compile an album, we are trying to save the moment, whether it be a child’s first steps, a wedding, a graduation, these are the accumulation of memories that may fondly remembered for future days. Nostalgia and poignancy colour our past days so that we can affirm to ourselves that our days were not in vain.

No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were: any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.

Meditation XVII – Now, this bell tolling softly for another, says to me: Thou must die - John Donne

Time and Life

What a ridiculous thing it is to trouble ourselves about taking the only step that is to deliver us from all trouble! As our birth brought us the birth of all things, so in our death is the death of all things included. And therefore to lament that we shall not be alive a hundred years hence, is the same folly as to be sorry we were not alive a hundred years ago. Death is the beginning of another life. So did we weep, and so much it cost us to enter into this, and so did we put off our former veil in entering into it. Nothing can be a grievance that is but once. Is it reasonable so long to fear a thing that will so soon be despatched? Long life, and short, are by death made all one; for there is no long, nor short, to things that are no more.

That to Study Philosophy is to Learn to Die – Michel de Montaigne

Did we lament the fact we weren’t alive during the Hanging Gardens of Babylon, the Enlightenment, or Woodstock? Do we lament that will not be alive when the futuristic flying automobiles and hoverboards of Back to the Future II will finally be available? It is a fool’s errand to do so. How lucky we are to be living in our times, over the course of history this is our time to live and breathe – how wonderful it is to feel this gratitude of being alive now? As in Lin Manuel Miranda’s smash hit Hamilton, in the song The Schuyler Sisters – there are words that leave their mark on this gratitude of the present tense. “Look around. Look around. At how lucky we are to be alive right now!”

You were dead for billions of years before you were born, and it didn't bother you one bit. You will be dead for billions more. Your life is an aberration. Enjoy it.

- Mark Twain

“The race of men is like the race of leaves. As one generation flourishes, another decays.”

- Homer

“There is a ripeness of time for death, regarding others as well as ourselves, when it is reasonable we should drop off, and make room for another growth. When we have lived our generation out, we should not wish to encroach on another.”

-Thomas Jefferson

Old men must die; or the world would grow moldy, would only breed the past again.

- Tennyson

It is through the eyes of youth that everything is constantly being seen anew and rediscovered with the advantage of knowing what has gone before; it is youth that is not mired in the old ways of approaching the challenges of this imperfect world. Each new generation yearns to prove itself – and, in proving itself, to accomplish great things for humanity. Among living creatures, to die and leave the stage is the way of nature – old age is the preparation for departure, the gradual easing out of life that makes its ending more palatable not only for the elderly but for those also they leave the world in trust.

How We Die P87

“Give place to others, as others have given place to you.”

- Michel de Montaigne

https://www.youtube.com/watch?time_continue=4&v=yRJBuNwQwzc

How lucky we are to be alive, and what a privilege it is to pass it on. No one can live forever, we should not lament that fact but rather seize life and live it – carpe diem before our time ends.

Everyone hopes to die peacefully and painlessly – I remember even as children we asked each other the question what would be the best type of death? And as morbid eight-year olds that we were, we all agreed to die in one’s sleep would be the ideal departure from this earth. So then with the increasing life expectancy and improved medical care from the dawn of the miracle of modern day medicine, our lives have become more stable as a result and the chance infection or illness to snatch away our lives is now much less common. This presents with a new set of challenges that Atul Gawande talks about namely the notion of how we die. This view has been romanticised and dramatized that our own expectations of the nature of our deaths has become something of a myth. Death presents itself as one of the factors beyond our otherwise controllable lives and this places a much larger emphasis on ars moriendi – the art of dying.

Sherwin Nuland suggests:

“Death with dignity” is our society’s expression of the universal yearning to achieve a graceful triumph over the stark and often finality of life’s last splutterings.

But the fact is, death is not a confrontation. It is simply an event in the sequence of nature’s ongoing rhythms. Not death but disease is the real enemy, disease the malign force that requires confrontation. Death is the surcease that comes when the exhausting battle has been lost. Even the confrontation with disease should be approached with the realization that many of the sicknesses of our species are simply conveyances for the inexorable journey by which each of us is returned to the same state of physical, and perhaps, spiritual, nonexistence from which we emerged at conception. Every triumph over some major pathology, no matter how ringing the victory, is only a reprieve from the inevitable end.

How We Die P10

The patient dies alone among strangers: well-meaning, empathetic, determinedly committed to sustaining his life – but strangers nonetheless. There is no dignity here. By the time these medical Samaritans have ceased their strenuous struggles, the room is strewn with the debris of the lost campaign, more so even than was McCarty’s on that long-ago evening of his death. In the center of the devastation lies a corpse, and it has lost all interest for those, who moments earlier, were straining to be the deliverers of the man whose spirit occupied it.

How We Die P41

When we begin to focus on death, there is an ethical slippery slope of the myth of the good death. In certain societies such as in Holland and Switzerland who have legalised assisted dying there is the worry is that this normalise euthanasia and medicalises old age – where we’re left with a dystopian Logan’s Run scenario. There is no clear answer like any other ethical question, Sir Stephen Hawking himself who said “Where there is life, there is hope” has also said “To keep someone alive against their wishes is the ultimate indignity,” and has spoken out in support of assisted dying. There is no clear answer. In the UK, euthanasia is illegal – but there are so many levels of this question it is impossible to have a complete blanket law for everyone because all cases are not the same.

Our ultimate goal, after all, is not a good death but a good life to the very end.

Being Mortal p245

Assisted living is far harder than assisted death, but its possibilities are far greater, as well

Being Mortal p245

https://www.youtube.com/watch?v=dV6fDJi_6ns

When afflicted by disease and ageing, dying becomes less in line with dignity. We lose control and may forget who we are, we become incontinent, forgetful, weak, short of breath and in pain. Sherwin Nuland argues dignity in death is very rare, there’s the view we’ll be stoic and transcend our circumstances but within the destructive effects of disease this becomes near impossible.

Though the hour of death itself is commonly tranquil and often preceded by blissful unawareness, the serenity is usually bought at a fearful price – and the price is the process by which we reach that point. There are some who manage to achieve moment of nobility in which they somehow transcend the indignities being visited on them, and these moments are to be cherished. But such intervals do not lessen the distress over which they briefly triumph. Life is dappled with period of pain, and for some of us is suffused with it. In the course of ordinary living, the pain is mitigated by periods of peace and times of joy. In dying, however, there is only the affliction. Its brief respites and ebbs are known always to be fleeting and soon succeeded by a recurrence of the travail. The peace, and sometimes the joy, that may come occurs with the release. In this sense, there is often a serenity – sometimes even a dignity – in the act of death, but rarely in the process of dying.

And so, if the classic image of dying with dignity must be modified or even discarded, what is to be salvaged of our hope for the final memories we leave to those who love us? The dignity that we seek in dying must be found in the dignity with which we have lived our lives. Ars moriendi is ars vivendi: The art of dying is the art of living. The honesty and grace of the years of life that are ending is the real measure of how we die. It is not in the last weeks or days that we compose the message that will be remembered, but in all the decades that preceded them. Who has lived in dignity, dies in dignity.

How We Die P268

Themes of death and mortality place life in perspective. Everything that is good is appreciated anew and all the bad and negativities don’t leave their impact that they used to. Not sweating the small stuff and letting the little things go comes from seeing the big picture. When we’re confronted with our mortality, we realise time is limited and that comes with getting the house in order, making sure what we leave behind will be better than before and our loved ones will be okay when we’re gone.

https://www.youtube.com/watch?v=XTvTLGkWYMU

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It’s the lesson of life to always be humble. The measure of a person is not how much they know but their confession of how much they do not know. Being humble is the key to constantly improving and striving to make things better for the future. Arrogance and pride can lead to a wave of egocentric complacency which blinds them to the crash that awaits them. By admitting our limitations to greater forces, admitting our own positions as mere mortals can we then realise the folly of playing god. Like the woman in Bob Dylan’s Like a Rolling Stone, karma is a cruel punishment for the proud.

`My name is Ozymandias, King of Kings: Look on my works, ye mighty, and despair!'

Nothing beside remains. Round the decay Of that colossal wreck, boundless and bare, The lone and level sands stretch far away".

Percy Bysshe Shelley

No one knows when their time will be cut short. In When Breath Becomes Air and Mortality by Christopher Hitchens. Both men were afflicted with the emperor of all maladies: cancer. The age-old question of why death comes prematurely denying one of a peaceful death – Why me? The answer: Why not?

In Jean-Dominique Bauby’s poetic and moving account The Diving Bell & The Butterfly, where he is afflicted with locked-in-syndrome – due to a brainstem lesion leaving him unable to move or talk, imprisoning him in his own body. It is something that I can imagine that would be like a living hell. He communicated through blinks to write his memoir and not a word was wasted. It is a beautiful book filled with pastime memories, regret and the daily routine of his new life. Life isn’t fair especially for these men, but their message they leave, is never to take anything for granted for human life is fragile and nothing is guaranteed, and your fortunes may change in an instant.

This examination of mortality has been since the times of Thomas Browne’s Religio Medici (The Religion of a Doctor) a hugely influential book that showcased his own thoughts and philosophy of medicine that elevated the profession to an art.

…this is indeed not to feare death, but yet to bee afraid of life. It is a brave act ofvalour to contemne death, but where life is more terrible than death, it is then the truest valour to dare to live, and herein Religion hath taught us a noble example: For all the valiant acts of Curtius, Scevola or Codrus, do not parallel or match that one of Job; and sure there is no torture to the rack of a disease, nor any Poynyards in death it selfe like those in the way or prologue unto it. Emori nolo, sed me esse mortuum nihil curo, I would not die, but care not to be dead. Were I of Cæsars Religion I should be of his desires, and wish rather to goe off at one blow, then to be sawed in peeces by the grating torture of a disease. Men that looke no further than their outsides thinke health an appertinance unto life, and quarrell with their constitutions for being sick; but I that have examined the parts of man, and know upon what tender filaments that Fabrick hangs, doe wonder that we are not alwayes so; and considering the thousand dores that lead to death doe thanke my God that we can die but once…

Religio Medici Section 43– Thomas Browne

In modern medicine, we have lost the fundamentals of what it is to treat the sick. We have forgotten what it means to have the privilege to speak with and treat our patients. Sometimes have to look back to remember how to realise the future. The age-old duty-bound Hippocratic oath of medicine and its interpolation of Primum non nocere – first do no harm, embedded in a sacred duty for our patients which is at the very centre of medical practice.

http://www.pbs.org/wgbh/nova/body/hippocratic-oath-today.html

In modern malpractice, the fellow humanity of our patients is often forgotten and eroded away to meet the target of cold political drives. The NHS (National Health Service) remains a remnant of the post-WWII desire by Aneurin Bevan to establish a brave new world – a better future for all of humanity to never face the horrors inflicted again. Free healthcare to the point of care where healthcare is a right not just a privilege for the few. I am proud of being part of the NHS and yet fearful for its future. What foundation of this wonderful system laid out in The Citadel by AJ Cronin and the fight against corruption before the NHS. I was gifted this wonderful novel by my Argentine school tutor who always was there to support me through quite a tumultuous time during my schooldays. I am very grateful for all his support and how teachers like himself are so rare nowadays, it is fitting he left me such an inspirational book to carry me forward. Seeing the NHS in crisis by political machinations makes us all realise what a special thing we have and something we should all fight for.

This anxiety and disillusionment I can see with my own eyes the day to day dismantling of what was a sacred institution and to witness the very best of humanity. In medicine, the litigation and blame culture has demanded nothing less than perfect in a beautifully imperfect human service during this consumerist age where the customer is always right because they are ‘entitled’ to the service and profit is always prioritised over people. Atul Gawande and Sherwin Nuland note this in America where Medical professionals concentrate on repair of health, not sustenance of the soul and an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs. When I first enrolled in medical school, I was full of giddy excitement which was soon replaced with shock then anger then disillusionment. Many of the medical students I have encountered have been difficult to say the least, of course there are countless that are lovely, beautiful, amazing human beings, yet I cannot help but feel the new age of medicine is recruiting technocrats and vastly intelligent, bright individuals yet lack basic human empathy and humility. Some of the arrogance I have witnessed has been disgusting, the blatant disrespect to others, the objectification of a patient as a mere lump of flesh by others has left me seething and wondering how and indeed why these people choose to become doctors? Unfortunately, this is something I think will only continue, the admission process can only be measured in certain ways – examination scores, grades, yet what is not and cannot be measured is the human behind the paper. The very same predicament is happening with the health system, overrun with middle men and managers who clock and measure every shred of data in order to assess performance. As Sherwin Nuland wrote in his coda to How We Die in 2010 shortly before he died:

Much of the reconfiguration of health care has been hijacked by economic needs.

…

In this New medicine, everything must be measurable. It must come in the form of a datum, to be commingled with other data in order to make the entire group of facts susceptible to quantification and analysis. Empathy, autonomy, caring, and simple unhurried kindness are not measurable and so become swept away as encumbrances to quantifiable efficiency. The individual patient, along with the complexities of his medical and human problems, is rendered invisible and inaudible by being hidden under the collective weight of some researcher’s or bureaucrat ’s protocol. Nowhere is this suffocation more effective than in stifling the care, counsel, and decision-making of those who are dying.

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I see some of my peers and the immense pressure they’re under – whether it be familial or institutional and often give them the ‘benefit of the doubt’ but finding myself under the same pressures I, in a lapse of my own better judgement when I forget who I’m speaking to could be my family member or a close friend, a fellow human being, and instead as mere tools to fulfil checkbox ticks proving my ‘competencies’. Whenever patients wanted to talk more about something but finding myself more preoccupied with looming examinations and hence not giving them the time I should have, or being frustrated a patient executing their right to not be seen and examined after having countless other medical students and doctors looking at their pathology. I am deeply ashamed of myself that I myself have fallen into this trap of forgetting the humanity of medicine – becoming Tolstoy’s stereotype of a doctor.

At the end, we and those who surround us cannot allow ourselves to fall victim to the imposed conditions of regimented men and women who would have us die under the unnatural conditions of a medical, economic, and bureaucratic order in which humanity and love have no place.

How We Die P282

There was no likelihood of guidance, or even understanding, from Harvey’s doctors, who had by then shown themselves to be untouchably aloof and self-absorbed. They seemed too distanced from the truth of their own emotions to have any sense of ours. As I watched them strutting importantly from room to room on their cursory rounds, I would find myself feeling almost grateful for the tragedies in my life that had helped me be unlike them.

How We Die P226

The doctor said that so-and-so indicated that there was so-and-so inside the patient, but if the investigation of so and-so did not confirm this, then he must assume that and that. If he assumed that and that, then…and so on. To Ivan Ilych only one question was important: was his case serious or not? But the doctor ignored that inappropriate question. From his point of view it was not the one under consideration, the real question was to decide between a floating kidney, chronic catarrh, or appendicitis… From the doctor’s summing up Ivan Ilych concluded that things were bad, but that for the doctor, and perhaps for everybody else, it was a matter of indifference, though for him it was bad. And this conclusion struck him painfully, arousing in him a great feeling of pity for himself and of bitterness towards the doctor’s indifference to a matter of such importance…He said nothing of this, but rose, placed the doctor’s fee on the table, and remarked with a sigh: “We sick people probably often put inappropriate questions. But tell me, in general, is this complaint dangerous, or not?…” The doctor looked at him sternly over his spectacles with one eye, as if to say: “Prisoner, if you will not keep to the questions put to you, I shall be obliged to have you removed from the court.” “I have already told you what I consider necessary and proper. The analysis may show something more.”

The Death of Ivan Ilyich - Chapter 4

We offer patients hope in medicine, whenever they are anxious, scared or pessimistic. There is always the possibility things can improve and get better. “Hope is itself a species of happiness, and perhaps the chief happiness which this world affords,” - Samuel Johnson. We must never allow our patients and loved ones lose hope – that we learn early on especially when dealing with patients who are dying. However, when we talk about death with a loved one or a close friend or a patient, and when knowing the condition is terminal, by offering white lies and false hope – we are doing them a disservice. But when there is nothing else to be done, instead of another investigation or procedure that will certainly prove to have the same result – the preparation and openness to talk about death is needed. Death after all is an event, we all must experience it at some point sooner or later. By not being open with our patients and loved ones, we are doing them a disservice – depriving them of their last wishes, their legacies they want to leave behind and the comfort of their loved ones when they go. It is this abandonment that Ivan Ilyich so feels when he is lied to from his doctor and his family about his fatal condition, being kept in the dark and helpless with no one to understand or help. Sherwin Nuland talks about one of his patients who is dying and the preparation of one last Christmas that meant everything to him. The last time to see family and close friends and tie off loose ends, and share that last moment of joy. Medicine with its goals, is not just to prolong life but also about so much more. Doesn’t everyone deserve this frank and open discussion, our preparations for death allow us to live a more fulfilling life to get everything we wanted done, complete our bucket-lists and set our priorities straight.

What tormented Ivan Ilych most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and the only need keep quiet and undergo a treatment and then something very good would result. He however knew that do what they would nothing would come of it, only still more agonizing suffering and death. This deception tortured him — their not wishing to admit what they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie.

The Death of Ivan Ilyich – Chapter 7

Death comes for all of us. For us, for our patients: it is our fate as living, breathing, metabolizing organisms. Most lives are lived with passivity toward death – it’s something that happens to you and those around you. But Jeff and I had trained for years to actively engage in death, to grapple with it, like Jacob with the angel, and, in so doing, to confront the meaning of a life. We had assumed an onerous yoke, that of mortal responsibility. Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patient. You can’t ever reach perfection, but you can believe an asymptote toward which you are ceaselessly striving.

When Breath Becomes Air P114-5

Death is in an old man’s door, he appears and tells him so, and death is at a young man’s back, and says nothing; age is a sickness, and youth is an ambush;

Meditation VII - The physician desires to have others joined with him – John Donne

You return man to dust and say, “Return, O children of man!”

Psalm 90:3

Josiah Royce, a Harvard philosopher wrote a book The Philosophy of Loyalty which tries to answer what is it that we need in order to feel that life is worthwhile? Simply existing and eating, sleeping and in comfort seems to be empty and meaningless. Royce believed that we all seek a cause beyond ourselves – to him, an intrinsic human need.

The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t mortality is a horror. But if you do, it is not. Loyalty, said Royce, “solves the paradox of our ordinary existence by showing us outside of ourselves the cause which is to be served, and inside of ourselves the will which delights to do this service, and which is not thwarted but enriched and expressed in such service.” In more recent times, psychologists have used the term “transcendence” for a version of this idea. Above the level of self-actualization in Maslow’s hierarchy of needs, they suggest the existence in people of a transcendent desire to see and help other beings achieve their potential.

Being Mortal p127

To find meaning and a cause in your life is the question that countless philosophers and wise sages have asked since the dawn of time. What is the meaning of life?

To die takes courage. Ernest Hemingway described courage as grace under pressure and I think that’s not too far off. Atul Gawande mentions Plato’s Laches where Socrates asks ‘What is courage?’ Atul Gawande then writes how he derived the definition: courage is strength in the face of knowledge of what is to be feared or hoped. Wisdom is prudent strength. He goes further where he mentions two types of courage required in aging and sickness. 1) the courage to confront the reality of mortality – the courage to seek out the truth of what is to be feared and what is to be hoped. 2) the courage to act on the truth we find. He ends by posing One has to decide whether one’s fears or one’s hopes are what should matter most – A truth to live a good life itself. Such with my own experience, much of life is a choice. During the 2 weeks of the London 2012 Olympic Games, I remember my time during the Olympics could either be spent indoors or outside visiting the various events organised during that fortnight during a rather uncertain time for me personally. It was my choice to either experience the atmosphere of the games or rather mope inside. This is a truth that is shared with much of life, life is what you make of it – and no one can take that away from you.

Conclusion

Tempus fugit – time flies

Ultima forsan – perhaps the last [hour]

When I remember my first encounters with death, I was only a young child, but their impact left a clear mark on me. There are always things I wish I did more of and said, I am regretful that I was too immature to understand how precious time was then and took things for granted as a result especially if it was someone who loved me as much as my Granny. She was a truly remarkable woman who the more I learn about the more I am humbled of her ability to overcome hardships and struggle. Her story is for my Dad to tell, to whom she passed on her best qualities and is the best person to pass on her story. The family friends we lost too soon who were amongst the kindest and best people we ever knew. Their stories are also for my Dad to tell who knew them through loyal friendships and unselfish kindness.

The lessons learnt from all of this is to never be complacent with time and death, love each other and appreciate the goodness and kindness in life, all the other negativities are just minor trivialities that have no impact in the bigger picture. To always be humble, to always be kind to each other and to yourself and to be patient with others. To count your blessings and have the courage to deal with life’s trials and the striving to make your life and the lives around you better and to be the master of your own destiny to fulfil God’s work. To be thankful of our opportunities we have been given and to make the most of them. All of this sounds like a cliche but in the face of death, this means everything. And one thing we can be certain of, is that we will die. What we make of life is how we live it. These final extracts voice the beauty of life and the pathos of farewell in the most beautiful and touching ways. I hope these words will resonate with you as they have done with me and hope that they will inspire you all to live your lives to the fullest and most meaningful so that by the time we are at death’s door we will share the same serene gratitude for our lives and hope for the future.

Yet I was still intensely moved and grateful to have gotten to do my part. For one, my father would had wanted, and my mother and my sister did, too. Moreover, although I didn’t feel my dad was anywhere in that cup and a half of gray, powdery ash, I felt that we’d connected him to something far bigger than ourselves, in this place where people had been performing these rituals for so long.

When I was a child, the lessons my father taught me had been about perseverance: never to accept limitation that stood in my way. As an adult watching him in his final years, I also saw how to come to terms with limits that couldn’t simply be wished away. When to shift from pushing against limits to making the best of them is not often readily apparent. But it is clear that there are times when the cost of pushing exceeds its value. Helping my father through the struggle to define that moment was simultaneously among the most painful and privileged experiences of my life.

Part of the way my father handled the limits he faced was by looking at them without illusion. Though his circumstances sometimes got him down, he never pretended they were better than they were. He always understood that life is short and one’s place in the world is small. But he also saw himself as a link in the chain of history. Floating on that swollen river, I could not help sensing the hands of the many generations connected across time. In bringing us there, my father had helped us see that he was part of a story going back thousands of years – and so were we.

We were lucky to get to hear him tell us his wishes and say his good-byes. In having a chance to do so, he let us know he was at peace. That let us be at peace, too.

After spreading my father’s ashes, we floated silently for a while, letting the current take us. As the sun burned away the mist, it began warming our bones. Then we gave a signal to the boatman, and he picked up his oars. We headed back to the shore.

Being Mortal P262-3

Everybody succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.

Yet one thing cannot be robbed of her futurity: our daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters – but what would they say? I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all past.

That message is simple:

When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s day with sated joy, a joy unknown to me in all my prior days, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.

When Breath Becomes Air P198-199

I feel grateful that I have been granted nine years of good health and productivity since the original diagnosis, but now I am face to face with dying. The cancer occupies a third of my liver, and though its advance may be slowed, this particular sort of cancer cannot be halted.

It is up to me now to choose how to live our the months that remain to me. I have to live in the richest, deepest, most productive way I can. In this I am encouraged by the words of one of my favourite philosophers, David Hume, who, upon learning he was mortally ill at age sixty-five, wrote a short autobiography in a single day in April of 1776. He titled it “My Own Life.”

…

Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life. On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.

This will involve audacity, clarity, and plain speaking; trying to straighten my accounts with the world. But there will be time, too for some fun (and even some silliness as well).

I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work, and my friends. I shall no longer look at NewsHour every night. I shall no longer pay any attention to politics or arguments about global warming.

This is not indifference but detachment – I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future. I rejoice when I meet gifted young people – even the one who biopsied and diagnosed my metastases. I feel the future is in good hands.

I have been increasingly conscious, for the last ten years or so, of deaths among my contemporaries. My generation is on the way out, and each death I have felt as an abruption, a tearing away of part of myself. There will be no one like us when we are gone, but then there is no one like anyone else, ever. When people die, they cannot be replaced. They leave holes that cannot be filled, for it is the fate – the genetic and neural fate – of every human being to be a unique individual, to find his own path, to live his own life, to die his own death.

I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have love and been loved; I have been given much and I have given something in return; I have read and travelled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

My Own Life – Oliver Sacks