REMEMBERING MY DAD

It’s a year ago today that my father died. Peacefully, in some discomfort but not in pain, in his armchair. I had been to visit him earlier the same day.
My mum died four years ago, in much discomfort I am sorry to say.
I saw this on the web today and thought it was so great that I would put it up here. Sorry it is written anonymously otherwise I would provide attribution.

‘Cardiac arrest, public toilets’, proclaimed the tinny speaker in the intensive care pager. Clutching the grab bag and defibrillator I headed toward the scene, considering what we were likely to find. There’s an unwritten rule of cardiac arrest: if it’s in a public place, it’s always a syncopal episode, a faint.
A number of responders had arrived before me at the cramped and panicked toilet area and started the well-trodden resuscitation path, delivering CPR to an elderly man we’ll call John. John had not fainted. Evidence of rigor mortis, the stiffening that sets in when the muscles stop receiving oxygen, was already manifest, and his face showed the calm, waxen permanence of death we hospital doctors become so familiar with.
The defibrillator, a machine that allows for rapid assessment of the heart, confirmed the complete absence of electrical activity. A search through his personal effects while chest compressions were ongoing revealed an elegantly handwritten note, written without fear or prejudice, with admirable perspicacity and with a strong undertone of defiance.
A life in the shadow of the sword of Damocles is one humans are not designed to endure.

Deciding to end life.

It began: “Dear the doctors and nurses of [our hospital],” and went on neatly to summarise a predicament affecting so many in our society. John had recently been diagnosed with myeloma, a cancer of elements of the blood, which is treated with potentially debilitating chemotherapy. In addition, he described an unstable thoracic aortic aneurysm (a dangerous dilatation of the great vessel leaving the heart, which can rupture catastrophically at any moment), which would be too risky to operate on. The decision not to operate, consistent with the Hippocratic imperative (first do no harm), would almost certainly grant him a longer life. A life, however, in the shadow of the sword of Damocles is one humans are not designed to endure – a frequently unappreciated blight of modern diagnostics.
John’s cool, phlegmatic assessment of these treatment options was that they were overly aggressive, and given the terminal nature of his predicament, he had pragmatically opted to “hasten his demise”. With no better options at his disposal, he had chosen the familiar environs of his local hospital and locked himself in the downstairs toilet. In the small hours, alone, but resolute, he allowed his life to ebb away. One can only imagine the cloying terror as his vision of the world narrowed and faded, his fear of being discovered with an involuntary noise, and the superhuman force of will that must have been required to quash his primal imperative to survive. His choice of the hospital reflected his gentlemanly consideration for others: he wanted to limit distress to those who would be most able to deal with it. Well dressed, with his elegantly written note, he had brought as much dignity as possible to this most undignified of deaths.

Dignity in death

Public discourse about end-of-life care remains limited, despite the attempts of (predominantly) terminally ill individuals to secure for themselves the same dignity and autonomy in death that we vociferously support in life.
We are dogmatically trained to assume that the desire to shorten one’s life must be associated with mental illness
John’s family recognise the fierce independence that led him to act as he did. For many others who make the same decision, more maleficent forces can come in to play.
The first is the widening chasm between older people and their friends and family. The generation now entering retirement tends to value the concept of absolute independence. The recent divorce between the old and the young, a phenomenon for which both parties must take responsibility, neutralises some of the greatest gains since humanity formed complex social groups 50,000 years ago.
Multigenerational communities foster inter-generational learning, a more efficient transfer of time and wealth, a stronger recognition of life experience as wisdom, and an increased engagement with disparate elements of the wider community. Perhaps the sense of isolation felt by many of our older people would be felt less keenly with more integrated social structures.
The second is the wider debate on assisted suicide. The topic has become so polarised that many feel unable to explore their feelings with anyone, particularly a medical professional. We are dogmatically trained to assume that the desire to shorten one’s life must be associated with mental illness.

Healthcare professionals must listen to patients’ dying wishes.

That we almost universally consider it to be inhumane to allow an animal to suffer an injury or illness from which they will not recover, while patronising intelligent, sensitive, and above all, autonomous individuals who hope for the same right, is a disgrace. Of course there must be rigorous safeguards and, rather uncomfortably, of course there will be errors and transgressions, but that does not mean the morally courageous option is to dismiss the debate on the myopic and selfish assumption that it is unlikely to affect us.
Frequently, those most invested in pursuing this route are the least physically able to evangelise widely, and when the debate becomes so personally relevant, any argument risks being dismissed as too emotionally biased for rational debate. It is crucial to state that, as with other morally challenging areas such as abortion, there will and must remain those staunchly and actively opposed. Thus the decision can exist in tension, forever under scrutiny, preventing the casual moral inflation that terrifies the ethically observant.

Why is so little weight placed on suffering?

Our modern culture oddly places little weight on suffering (which is unquantifiable; perhaps fortunately, one can never experience someone else’s pain), and overweighs death (irrationally, since this is life’s one guarantee). This is no more amply demonstrated by the fact that hospices – which focus on mitigating suffering – tend to be charitably supported, whereas as a nation we use 30% of our lifetime health expenditure in our last year of life, receiving intensive and traumatic hospital-based treatment.
As a physician, I recognise that the increasing target orientation of the medical profession encourages the sometimes inappropriate prolongation of death, while selling it as a noble extension of life. This is powerfully reinforced by the spectre of hope, emboldened by a sensationalist media bias to report the miracle cures and ignore the failures.
True understanding of the consequences of treatment requires a medical degree and a lifetime of exposure to the distress intensive medical treatment causes patients and their relatives. An undercurrent of public distrust of physicians’ motives, sullied by misinformation about the Liverpool Care Pathway and recent hospital scandals, makes the difficult conversation about withdrawal or limitation of treatment seem at best callous and patriarchal, at worst sinister.
Doctors, when it comes to their own end, tend to opt for the least complex healthcare intervention, which should serve as a comforting indicator that their motives are benevolent. Most choose only effective analgesia and a peaceful death at home with their loved ones.
However, the more advanced our tools, the harder it becomes to justify not using them, and the pernicious term ‘ageism’ has been the Trojan horse under which much of the recent increase in medical intervention has been smuggled. Whether driven by fear – of death or litigation – ignorance, hope, or the imperative to ‘win’ against disease at all costs, we sit as King Canute: foolishly, distressingly and impotently commanding the inexorable tide to retreat.
Those who fail to come to the moral negotiating table over indignity in death condemn the silent many to the lonely path John took that night: scared and alone, yet principled, considerate, and fiercely autonomous to the last.