MND Musings - formerly Diary of a Donkeybody - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I've found a dancing joy nonetheless.
Tuesday, 15 July 2014
What's wrong with the Falconer Bill?
On Sunday I was asked for my views on ex-archbishops
endangering the lives of disabled and ill people. Well, it was the World Cup
and I needed a day off; so I promised something on Monday. (Sorry - missed my
deadline!) And this, I hope, will be it. Actually rather than knocking two
well-meaning old codgers, I think I’ll write about about Lord Falconer’s
deceptively innocuous-sounding bill on “assisted dying” whose second reading
takes place in the House of Lords on Friday.
summarised in Parliamentary business papers as “A Bill To enable competent
adults who are terminally ill to be provided at their request with specified
assistance to end their own life; and for connected purposes.”
summarised its contents like this: “His
bill would make it legal for doctors to help mentally competent adults with
less than six months to live to kill themselves. Two doctors would need to
agree that a patient met the criteria and the option would not be open to
minors, people without mental capacity or those who are not terminally ill.
“The final step would involve a doctor (or nurse) hand-delivering lethal
drugs to the patient at a time and place of their choosing and staying with
them while they took the drugs and until they were dead.”
I’m indebted also to Peter Saunders for the following three headings. He is
not to blame for the comments thereafter, which are mine.
The present Suicide Act makes it illegal toaid, abet, counsel or procure the suicide of another, or an attempt
by another to commit suicide, with a maximum
penalty of no more than 14 years in gaol. The law is hedged round with
safeguards such as prosecutions being carried out only by the Director of
Public Prosecutions (within compassionate guidelines) and all the processes of
jury trial and appeals. The law as it stands enshrines absolutely the
protection of life, but allows the leeway of public interest and compassion, in
other words, Portia’s principle of justice and mercy. The fact that in the 53
years since the Suicide Act was passed there has been no contentious court case
is evidence that it’s not a bad piece of legislation.
End of life care
aunt-sally propagated by the assisted-suicide lobby is that at present many
doctors in fact covertly kill their terminally ill patients. I think they refer
to the double effect of ceasing treatment or administering drugs with the
intention of mitigating symptoms and alleviating pain. There is a category
difference between that intervention and what the bill proposes (from
understandable motives). A doctor friend of mine commented yesterday:
“Desmond Tutu, as quoted..., is completely
misunderstanding the issue of assisted dying and my worry is that the bill will
be passed based on these misunderstandings.
“Scenario 1) A person is terminally ill. It is their time to die and
further treatment is futile and unnecessarily prolongs suffering (e.g. Repeated
courses of chemotherapy, or the intensive care treatment of Nelson Mandela
described in this article). We don't need a change in law for this. We need
sensible, compassionate care.
“Scenario 2) A person is terminally ill and has a 'settled wish' to
die. Two doctors therefore agree to end that persons life by way of
administering drugs. This is what the bill proposes.”
The accusation that palliative care specialists intend to kill their patients rather than ease their last hours has to my mind a hint of malice about it.
oath v necessity
Nursing = caring
I understand it, the aim of the bill is for health professionals (such as
doctors and carers) to be allowed to take someone's life or to assist in their
suicide: so for example allowing my doctor to administer a lethal injection at
my request. That opens the door to doctors ceasing to be healers and carers,
and becoming dealers in death. That is one of the most valuable safeguards in
the DPP's Guidelines on Prosecution in respect of Assisted Dying, preventing
health professionals helping someone taking their own life. I guess that's why
the BMA is against a change in the law. As events proved, in Tony Nicklinson’s
case for example, there was no necessity for a doctor to end his life. He could
refuse treatment and ask for only symptom control and pain relief.
The bill itself
There are many aspects of the bill itself which are glaringly unsafe. For
example the six month cut-off point: as any
honest doctor will admit, such a precise prognosis is notoriously hard to make
- witness the case of the “Lockerbie bomber” Al Megrahi being released having
been given three months to live by the country’s leading cancer specialist, Professor Karol Sikora, and enjoying another three years of life back home. I know
a number of people, such as the late Alison Davis, who are profoundly grateful
that an early exit was not open to them, since they went on to live many more
years of fulfilled life. For example the assessment of mental competence and settled desire simply by two
doctors. There is no specifying of who the doctors should be, what their
qualifications should be (for example psychiatrists). Presumably they would be
doctors in favour of assisting death, and the prospect presents itself of the
situation emerging in Holland of mobile euthanasia clinics with a couple of
doctors ready to sign the necessary papers on board. For example, the requirement of informed consent. Does that mean
being given a leaflet about local hospices, or palliative care packages? In my
experience there’s no real alternative to visiting and staying in a place where
you can experience care from the real experts.
The proponents of assisted suicide often pillory the idea of a “slippery
slope”. But experience shows it is unwise to do so. The Benelux countries and
Switzerland (the only European nations with voluntary euthanasia) have
witnessed a steady relaxation of the safeguards originally in place there. In
the two US states where assisted suicide exists the number has steadily
increased. Times of austerity (like the Depression of the 1930s) have seen a
rise in euthanasia - see “Action T4” in Wikipedia
(http://en.wikipedia.org/wiki/Action_T4). Disturbingly one can hear hints of
this in Desmond Tutu’s “But why is a life
that is ending being prolonged? Why is money being spent in this way? It could
be better spent on a mother giving birth to a baby, or an organ transplant
needed by a young person. Money should be spent on those that are at the
beginning or in full flow of their life.”
Saunders’ comment is pertinent. “The right to die can so easily become the duty to die and the
generation that has killed its children through abortion could very easily
become that which is killed by its children through euthanasia and assisted
suicide. Add in economic crisis, debt, cuts in health and welfare and the
argument gains force by playing on popular prejudice against those perceived to
be a drain on families and the state.”
Lord Carey cited cases of permanently disabled people to explain his
change of mind. Yet they of course are not covered by this bill. One see how
inevitably the argument will be, “Why not these people?” “And why not teenagers
younger than 18?” “Why not those with a longer-term terminal illness? Those
with a chronic painful condition?” And so euthanasia is upon us. Disabled
campaigners such as Tanni Grey-Thompson and Baroness Jane Campbell are clear in
warning of this danger.
A further real danger is that of the disabled and chronically
experiencing explicit or implicit or self-generated pressure to ask for
euthanasia. Personally I think the last is the most likely, as the disabled, chronically
ill and elderly seek to alleviate the expense and anxiety of those who care for
them, whether family or state. And it would also be naïve to underestimate the
amount of elder abuse in this country.
Stephen Hawking who like me has a rare form of MND not long ago
propounded what I call the “pet theory”. It goes something like this: we have
our pets put down when they’re suffering. Surely people deserve better than
that? However it’s also true that we have them put down because they become
incontinent, because their vet bills rocket and because, to be blunt, they’re
no longer afford us pleasure. In other words, it’s more about us than the pet.
Compassion, it seems, is often confused with pity. The true and original
meaning of compassion is to suffer with, to stay with someone in their pain and
darkness. It doesn’t mean to put them out of their misery; it doesn’t mean
concurring that their life has lost its value; it doesn’t mean euthanising
them. That’s a cheap imitation of compassion. True compassion is costly
emotionally and often financially.
Investment in universal best palliative care is the true expression of compassion, not the offer of a cocktail of barbiturates, which is a perversion of therapy.
Defence of the vulnerable
"You are not a burden."
Another mark of a civilised society is its attitude to the weak and
vulnerable. Eugenics gained traction in the early 20th century, wanting to
produce healthy strong and racially pure men and women. The weak went to the
wall. I'm not concerned for myself - although I don't look
forward to the process of dying - but I am concerned
for the vulnerable, the disabled who don't have a voice, for the elderly who
are at risk through dementia or frailty - for those who are increasingly
regarded as a burden on their
families, on society, on our nation's resources. It's those people our laws
should protect. Ironically Lord Falconer’s bill seems to me to be about people
who are far from vulnerable. It’s about determined people concerned to maintain
control over their lives come what may.
only come with responsibilities. My right to life, or to death, can't be
isolated. If my demanding the right to die endangers the lives of others, then
my responsibility to them trumps my choice. You can’t have a community, you
can’t have a society where each person insists on his or her rights. Rights, in
my view, are not possessions. They are what we afford each other. The danger of
this legislation is that it begins to remove the right to life of the many to
accommodate the right to choose of the few.
Value of life
Neither is life a possession. Life is bigger than us. We are a part of
life. We are granted a share in the adventure which is life. In financially
straitened times, such as we are told we are now in, there is a real test on
the horizon: what do we value more - money, or life? That will be the measure
of our society. I know what I would prioritise.
The value of life was long ago encapsulated in a simple principle, “You
shall not murder”, a word which includes intentional killing, and also from
carelessness or negligence. In other words life, of whatever perceived
“quality”, is precious and to be protected.
Lord Falconer’s bill, well intentioned
though it may be, is in my view unsafe and opens the way to consequences which,
though denied, are entirely logical extensions of the breach in this principle.