“In a certain state it is indecent to go on living. To vegetate on in cowardly dependence on physicians and medicaments after the meaning of life, the right to life, has been lost ought to entail the profound contempt of society.”
Friedrich Nietzsche 1860.
Not much fun that boy Nietzsche. Certainly not much fun if you are as Yeats phrased it “old and grey and full of sleep and nodding by the fire” but then maybe you would be totally unaware of your incapacities and the burden is on others. These days we are stretching more years out of our lives. Some 40% of those born today could live a 100 years something unheard of before in human culture. The Queen, who traditionally sent a telegram to every centarian has switched to a preprinted mass produced card as there is now so many. But are we adding quality to these additional years of our lives? Francoise Mitterrand’s quip that he wanted to die at 89 as a result of a gunshot wound caused by a jealous husband and for me this best describes the need for quality as well as quantity in whatever years we live.
End of life is a huge challenge for the individual, their family and for the health and social care organisations that provide support. The majority of the health resources we consume we use up in the last two years of our lives as we become unhappy, discontented, ill, burdensome, shadows of our former selves. We wrongly assume that at this point medical intervention, no matter how aggressive or expensive, will save us from the certain death that awaits.
We are very bad at dying. It frightens us; loss of those we love, never seeing them again is difficult to bear never mind the pain and suffering that most often accompanies our demise.
So it’s not surprising that English families who discovered posthumously that their mums or dads had been put onto a palliative care programme -the Liverpool Pathway- without family agreement created a furore. This is interesting as the medical staff made the decision that nothing could be done to help these patients and the only humane course of action was to support death in the most comfortable way possible, was deemed to be well, inhumane. They were expected to do something…something. Medicine has done such a good job on promoting its capabilities.
A very dear aunt diagnosed with lung cancer rather than be put to bed and cared for was dragged from hospital to hospital and subject to myriad treatments that massively reduced her quality of life until she finally called a halt to the madness and went home to die. It’s possible she might have increased the weeks she lived but at least her end was peaceful at home with the family she wanted to be with.
Her story is not unique. Writing on the web discussion forum, Zocalo Public Square, Ken Murray a US physician calls this type of treatment “futile care”. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get; cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a huge daily cost. What it buys is misery. Ken tells us that some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them and some go as far as getting it tattooed onto their chest.
Medical progress has left us with a dilemma; when do we stop offering treatments and implement a palliative care programme? Patients interestingly seem to have a different view from family who seem to want to continue no matter how pointless the exercise. Off course the ethics is a work in progress and like all ethical arguments it will take considerable time, if ever, to work through.
In the meantime, while the great and good sit in judgment in their ivory towers figuring out the ethics and morals and finally come to agreement with Nietzsche, the rest of us will have to soldier on. For an increasing number of us at least we will live too long and the additional, hours, days, weeks and even years will prove very painful and expensive.
Terry Maguire is a pharmacist in West Belfast