Sunday, 2 December 2012

Why not choose death indeed

In response to an a blog written by Dr James Salwitz

It is achingly true that indeed there is no dignity in being dead. Death is in all ways cold and grey and unrelentingly ugly; un-poetic and final. However there is true courage and unparalleled dignity in an individual who takes control of their own destiny and the manner in which death is met, dignity and love.
I write on a damp and chilly December day in the south of England. We are also looking at changing our laws to allow I hope, for assisted dying. A staunch campaigner is our much loved and respected novelist and all round rebel Sir Terry Pratchett. He sadly will not be able to benefit from any immediate change as his illness is not terminal in itself and will result in dementia. He suffers from a particularly nasty form of early onset Alzheimer’s. For those of you who are familiar with his work and the kindly character Death who speaks in capital letters, it will come as no surprise that his own motto is
There is a growing willingness to engage with this discussion in the United Kingdom and to quote A Matter of Facts May 2011 published and produced by Dignity in Dying.

The 2010 and 2007 BSA surveys found that the majority of the British public support assisted dying. In the 2010 survey, 82% of the general public agreed that a doctor should probably or definitely be allowed to end the life of a patient with a painful incurable disease at the patient’s request and the 2007 survey found that 80% agreed that a person with a terminal and painful illness from which they will die should be allowed an assisted death.

The 2007 survey also explored in detail whether assistance in dying should be extended to people who are not terminally ill (strictly assisted suicide rather than assisted dying), and found that support drops significantly for this. Only 45% agreed that a doctor should be allowed to end the life of somebody with an incurable and painful illness from which they will not die, and support fell further to 43% when this question was considered for someone who is ‘not in much pain nor in danger of death, but becomes permanently and completely dependent on relatives for all their needs’.

I was recently invited to attend a discussion called
Choice at the End of Life’ an All Party Parliamentary Group, Draft Assisted Dying Bill consultation.
Quite a mouth full.
Members of Parliament and Representatives of the House of Lords, medical professionals and concerned members of the public, me being one of them, sat together in time honoured fashion around a table, to explore and enquire how to best address this subject. We did our best to ignore the urgent clanging of the Division Bells calling MP’s to vote.

The overriding feeling in the room was one of honest enquiry, an openness and willingness to put taboo and fear aside to really look at the issues which include preventing abuse as well as how to best enable an assisted death. When the Draft Bill is refined and ready for presentation in the spring I suspect it will relate only to those who are fully mentally competent therefore not with any form of dementia and have been diagnosed as being terminally ill with only six or possibly twelve months to live. And as such of no use to our beloved Knight of the Realm Sir Terry.

I have followed this debate with close attention over the last couple of years and in particular the last year or so as my own beloved brother became more and more ill with Progressive Nuclear Palsy. Now there’s a real nasty disease if ever there was one. As is often the case until something becomes relevant and pressing in one’s own life it is easy to miss the dilemmas being faced by others. Dr Salwitz expresses his concerns from a doctor’s point of view, a medical professional who faces every day the reality of coping with pain and disease and basically looking for ways to relieve suffering.

Assisted death is seen by those seeking to change the law, as being part of what should be offered to patients. A way of giving us choice. I have not heard an argument for replacing palliative care in fact the reverse is true. Those struck by some awful and often terrifying disease are, the facts show, more inclined to accept the palliative care because they know that when the point comes that they can no longer cope with it they have an alternative in which they can take control of how and when they die. This allows them to relax and it often means that because there is no grinding fear that they will be forced to undergo suffering that they feel able to accept the palliative route.

One of the points raised at the APPG discussion was a lack of statistics related to the number of people who have a medically managed ‘bad’ death. Not all palliative care results in a kind and pain free end and it is important that the public in general do not carry a misguided view that all medically managed deaths are ‘good’. We all have our own horror stories.

Another fact brought to light is that there is no evidence of abuse or indeed high numbers of people resolving their end of life using assisted dying in those places where the law provides and supports it. Please research and look at the statistics. I have them but I don't want to make this a dry list of words. If anyone wants I'll give them.

Let us look at the definition of assisted dying as opposed to assisted suicide or euthanasia;

Assisted dying (permitted in the US states of Oregon and Washington) sometimes referred to as physician-assisted dying, applies only to terminally ill, mentally competent adults and allows the dying patient, after meeting strict legal safeguards, to self-administer life-ending medication.
Assisted suicide (permitted in Switzerland) allows assistance to die for chronically ill and disabled people, along with terminally ill people.
Euthanasia is a term often used to refer to the administration of life-ending medication by a third party.
Voluntary euthanasia (permitted in the Netherlands and Belgium) allows a doctor to administer the medication directly to a requesting patient.
Non-voluntary euthanasia describes a situation where a third-party (usually a doctor) administers life-ending medication without the consent of the patient. Both voluntary and non-voluntary euthanasia are illegal in the UK, although evidence shows that both do occur.
The assisted dying legislation as proposed by the Campaigning charity Dignity in Dying is similar to that in place in Oregon and Washington and would give terminally ill adults choice and control over the timing and manner of their death. In Britain Dignity in Dying does not campaign for a change in the law to allow assistance to die for people who are not terminally ill.
In the media I have been struck by how some intransigent nurses and doctors have been quick to say that assisted dying is wrong and should remain firmly outside of our mere men and women’s reach. What do we know about death and dying. They seem to feel they know best. At first I thought this to be simple arrogance and I was furious. ‘Doctor knows best dear.’ But that is too harsh and shows lack of compassion for individuals who after all are making their life's work about caring for others.

It should be noted that in the UK as statistics show at the moment 1/3 of doctors are opposed, 1/3 unsure and 1/3 support a change, and more nurses are supportive than not. There are an impressive and growing number of healthcare professionals for assisted dying and they are becoming more vocal at putting the alternative view across. Change always takes time and effort. The numbers are growing.

The fact remains though that nobody has to do what the doctor tells them, My own 92 year old father proved that point when after surgery some years ago for a hernia he waited until he knew he felt well enough and then just quietly went and found his car and drove home. The nurses didn’t even realise he’d gone. He also got up and left without being seen by a doctor after waiting in line for three or four hours at our local hospital when he fell and gashed his leg. He was quite prepared to sew it up himself and it was only when I persuaded him that an anti-tetanus shot would be a good idea that he agreed to come with me to see our General Practitioner who kindly put a few stitches in place.

 We have choices in how we live why not allow us to chose how we die? We are the keepers of our own flames of life. No one has the right to tell me how I will die and I will defend the right of others, albeit with a shaky voice, to take this step themselves. As immortality continues to evade us we will all most certainly endure a final parting. I firmly feel that no-one can council another to enter onto the road of assisted dying. This is too important a decision to even think of influencing someone. However so long as safe guards are in place to support and cherish another human being who has decided to avoid what they consider to be intolerable indignities is a rare honour and an opportunity for deep and profound loving to walk along side them.
Intervention by well meaning professionals when we do not require their assistance, robs us of our confidence and inner strength…or our dignity. I did not need a doctor to tell me how to give birth to my three children. What I did need was for her to be standing by in case anything went wrong. I was confident because I had the choice. I knew she was there if I needed her. How wonderful was that. How precious her hands off role and how welcome she would have been if I had the need.

The same is true with our passing. The role that experienced and gentle doctors and nurses and indeed all health professionals play is quite fantastic. But they have no right to impose on me what I consider to be intolerable. There is a mist of myth related to abuse and fear of the frail being taken advantage of. I'm not saying that there is no cause for concern it’s a real fear, however it is not beyond the wit of man and woman to protect and shield each other from this kind of harm.

And yes when there is an option we can celebrate that our doctors offer us health and comfort but the comfort is cold when the only person it makes feel any better is the doctor.