I’m reading two books at the moment. The first is Being Mortal by Atul Gawande. The second is When Breath Becomes Air by Paul Kalanithi. Both, in different ways, tackle the subject of death and try to contextualise the experience. Gawande discusses how attitudes to life and death differ according to culture and how, in the West, we have lost sight of death as part of life. Kalanithi’s book is an account of his parallel change from neurosurgeon in training to terminally ill cancer patient, examining what matters in those conflicting circumstances. Considering our collective squeamishness over the subject of death, both have sold extraordinarily well. Their presence on my bedside table is testament alone to the strength of the writing.
I have thought a lot about death recently. Sometimes in a matter of fact sort of way – do I want to be buried or cremated? Sometimes in a more spiritual way – reincarnation, belief, religion, that sort of thing. Sometimes in a personal way by the loss of a friend. In Parkinson’s, we seem to lose our friends more often than we would hope. This week the Parkinson’s community lost one of its strongest campaigners and I lost a friend. Not the first. And certainly won’t be the last. Tina Walker was a strong campaigner for young onset Parkinson’s disease. For three years we sat together on the editorial board of The Parkinson, the house magazine of Parkinson’s UK. We shared a laugh on many an occasion. She loved rattling people’s cages. Pretty much everyone at those meetings turned up in business clothes. Tina used to wear a Motorhead T-shirt. You couldn’t help but love her. Tina was diagnosed at 44. She was 59 when she died.
One of the first things you are told when you are diagnosed with Parkinson’s is that it will not kill you. People die with Parkinson’s but not of it. And, as new patients, we cling to this notion. We even pass it on to others as though, in doing so, we strengthen its credibility. But why do we believe this? Is it even true? Is the reality so unpalatable that we must replace it with lies? And how does this help?
Let me give you an example. People with Parkinson’s often have impaired balance and are much more prone to falls. So, imagine for a second that Mr Bloggs, a 70-year-old man with Parkinson’s, has a fall. An ambulance is called and he is taken to hospital with a suspected broken hip. Being bedridden, it is not long before he contracts a chest infection. Antibiotics fail to control this and he dies. The death certificate lists pneumonia as the cause of death. At face value, Mr Bloggs has died with not of Parkinson’s.
And herein lies the crux of the matter. Yes the pneumonia was the final straw that took Mr Bloggs away to meet his maker. But it is delusional to believe that Parkinson’s played no causal role. If Mr Bloggs hadn’t had Parkinson’s, chances are he would not have fallen. So the Parkinson’s is, albeit one step removed, very definitely causal in his death. Mr Bloggs has died as much of Parkinson’s as with it. Let’s be clear on that.
The simple fact is that death certificates tell only a partial truth. The death certificate is little more than a summary of finality rather than a discourse on causality. Many a complex clinical picture is hidden by the brevity of wording on the death certificate.
If you look at all-cause mortality (that’s death by whatever it says on the death certificate) in people with Parkinson’s, the picture is much clearer. On average, if you have Parkinson’s, you will die younger than if you did not. And this is particularly pronounced for those with young onset Parkinson’s (YOPD). If you are diagnosed with Parkinson’s at the age of 90, you will probably lose about a year of your life expectancy from that point. On the other hand, if you are diagnosed with YOPD at 40, you are going to lose more than a decade of the life expectancy you could have anticipated if you had not developed Parkinson’s. You will live, on average, to your early 60s instead of your late 70s. I was diagnosed in my late 40s. My anticipated life expectancy is a further 20 years from there, on average. I will miss out on another eight years. That’s the period when I might be enjoying retirement or celebrating grandchildren. This is the stark reality of the condition. It’s time we dispelled this notion that Parkinson’s is not a killer. It is, and until we kill it, it will continue to be.
But life is more than numbers. Mozart was 35 when he died. But in that short life (even by the standards of the 18th century) he wrote some of the greatest music ever performed. He filled his life to the brim. Which leads me back to Atul Gawande and Paul Kalanithi. Life is not about length but about value and quality. Kalanithi especially shows that life is even more important, vital in its truest sense, in the face of death. We don’t judge cricketers by how long they occupy the crease but by how many runs they score or wickets they take. It falls to us, in our shortened lives, to make them extraordinary – to be the best we can, to suck the marrow out of experience. And we need to look reality in the eye.
Atul Gawande (2014) Being Mortal
Paul Kalanithi (2016) When Breath Becomes Air.
Lianna S Ishihara, Anne Cheesbrough, Carol Brayne, and Anette Schrag (2009) Estimated life expectancy of Parkinson’s patients compared with the UK population. J Neurol Neurosurg Psychiatry. 78: 1304–1309.