Before I Say Goodbye is a book publising the columns by Ruth Picardie, the journalist who died of breast cancer. It is a candid and humorous reflection on her experience as she reached the end of her life. It is inspirational in many ways and resonated with me when I read it years ago; before I was diagnosed with multiple sclerosis.
Today the parliamentary report from the Commission on Assisted Dying is headline news recommending MPs should consider changing the law on assisted suicide to allow some terminally ill people to end their lives at home with the help of their doctor. As one falling into the category of a chronic long term incurable illness I have a particular interest in the report from both a personal point of view and a wider humanitarian perspective. For me it is about choice; my right to choose the manner and timing of my exit stage left (or right) from this mortal coil.
Overall the recommendation that assisted dying should be offered as a choice to terminally ill patients at the end of their lives is progress (of sorts). However it is hard to see how the recommendations could have been more cautious. The benefits will, if approved, be accrued by a very small number of people. By the time the precautions and sanctions have been put in place it is hard to see how many people (diagnosed as likely to die in the next 12 months) will have the energy to garner the signatures needed. On the other hand perhaps the simple act of expending this amount of energy on the end of life checklist will be sufficient to make one expire; although ironic that would be awfully convenient. Of course if approved the patient would be able to solicit the assistance of a third party to pace the streets on ones behalf; assuming there is someone willing, able and trustworthy to engage.
I deliberately make light of the issue which is of course a matter of great import that should be approached respectfully. Baroness Finlay, the Cardiff based Palliative Care Specialist was interviewed on the radio this morning as she always is when the topic is discussed. She is an advocate of high quality end of life care with particular attention paid to pain management; laudable intentions but only a partial picture. Palliative care is about management; indeed good care can extend the patient’s life giving more time and a better quality of life. But it does not change the diagnosis; the patient is still going to die ultimately.
For me this is akin to being parked in a holding pen to wait; a padded cell from which to observe ones demise. For some, and some days I include myself in here, one questions the purpose of the waiting. Think about being in a position where your body disintegrates gradually, incrementally and to fellow voyagers almost imperceptibly slowly. And for good measure periodically, without warning (or reason), the decline accelerates taking a leap into a new abyss.
It makes planning a tad difficult; risk management almost irrelevant and the temptation to involve anyone else in the experience disappear. Hmm what now; what next one wonders? Like Alice in Wonderland falling down the rabbit hole one tumbles initially at speed gathering momentum before gliding towards a new level. As the momentum winds down one has time to pause to glance at the view; from a new perspective and cogitate on the implications.
The policy makers, care providers and specialists in the main manage your condition from an academic/text book perspective; few have a personal (direct or indirect) insight. When discussing the side effects of pain medication with my GP recently the conclusion was to get rid of the side effects I needed to reduce the quantity of drugs taken (really how nice of you to point out the blindingly obvious)! When I asked if what he meant was that I would need to learn to live with a degree of pain he said yes. As a well brought up individual I resisted the temptation to ask if he had any personal experience of chronic pain.
It is a conundrum; how to make social policy with wide ranging implications for citizens that benefits both society and the individual without being patronising or paternalistic. The vulnerable need to be protected of course, but who decides on the degree of vulnerability? Pragmatism from intelligent patients, following due consideration and a thorough appraisal of the options, should not be confused with undiagnosed depression or melancholia.
When considering the issue of assisted dying I ask you to reflect upon your life, the things that are important to you and that you value or cherish. Distil the essence of you; consider the impact of this elixir evaporating and losing its potency – how would you feel without this? It is difficult to envisage our lives without the enrichment that is derived from close friends and family. But would you want those special people to go through tremendous suffering to be there for you?
Over a decade ago someone I knew committed suicide by taking an overdose. She was found and taken by air ambulance to a specialist unit where she died. I often wonder what I would have done had I found her. Knowing her as I did, having an insight into how her life experience had damaged her and the pain she negotiated everyday to just exist, I like to think I would have had the courage to leave her in peace.