‘This Bill is about me’: Baroness Campbell’s speech at yesterday’s Lords debate

The Falconer Bill was debated yesterday in the House of Lords. (A good report is here.) The speeches were about half-and-half for and against the Bill. Many peers spoke from their own personal experience, including Baroness Jane Campbell, who has spinal muscular atrophy. The full text of her speech is below.

My Lords, I have fought for autonomy the whole of my life. I have fought for that for myself and for others. I do not want this Bill.

First, I must declare a very important interest. This Bill is about me. I did not ask for it and I do not want it but it is about me nevertheless. Before anyone disputes this, imagine that it is already law and that I ask for assistance to die. Do your Lordships think that I would be refused? No; you can be sure that there would be doctors and lawyers willing to support my right to die. Sadly, many would put their energies into that rather than improving my situation or helping me to change my mind. The Bill offers no comfort to me. It frightens me because, in periods of greatest difficulty, I know that I might be tempted to use it. It only adds to the burdens and challenges which life holds for me.

However, it is not just about me. My story is echoed by the majority of disabled and terminally ill people in Britain today. Many of them are outside this House, protesting against the Bill. I urge your Lordships to go and talk to them. Many more will have written to your Lordships. Supporters of the Bill argue that there is a hard and fast distinction between terminal illness and disability. I can tell you absolutely that there is not. We, the folk this Bill claims to serve, know that. The Bill purports to offer choice – the option of premature death instead of pain, suffering and disempowerment – but it is a false choice. It is that of the burglar who offers to mug you instead. That is not choice. Pain, suffering and disempowerment are treatable – I have to believe that – and they should always be treated. My long experience of progressive deterioration has taught me that there is no situation that cannot be improved.

I have spent my life developing ways to prevent people in vulnerable situations feeling powerless and burdensome. They do get cajoled and do feel a burden, especially when they are at home with no one to come and assist them to go to the toilet and to have dignity. I have seen this transformation when people have been helped. Those whom society once saw as totally dependent have become active and valued human beings. I am afraid that assisted dying will bring back outdated beliefs that devalue disabled and terminally ill people, when we have tried so hard to get away from them. Small wonder then if some succumb to those beliefs and see premature death as the only answer. Small wonder if family, friends, doctors and others see it as their duty to support that goal. It appears easier, cheaper and quicker – and it is.

The Bill is motivated by fear and pity but as the greatest French novelist Balzac observed,

“pity is death to us – it makes our weakness weaker still.”

Death is seen as a release from pity, for both giver and receiver, but there are far better ways of responding. We must put our energy into providing the best support, be it medical, social, practical or emotional, to disabled people and terminally ill people. We are nowhere near there yet. Helping people to live with dignity and purpose must surely be our priority. Disabled people and terminally ill people do not deserve pity. They deserve so much better. The Bill has become a runaway train, and the more frightening because of that. Please let us pause and find ways to reflect further. The Bill is not the answer.

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The very wording of the Falconer Bill reveals its implications for the vulnerable

About the author: A former OSFL committee member, Greg Jackson is currently studying for an MA in Ethics.

For those of you who have not yet had a chance to read Lord Falconer’s Assisted Dying Bill, here are some of its key phrases.

To begin with ‘assisted dying’: The phrase is a euphemistic attempt to make it seem as if what is here described is a part of the practice of palliative medicine. All it really amounts to is assisted suicide under certain conditions – conditions that we may fear will expand in the future, perhaps without limit.

Much of the Bill’s wording, when looked at closely, gives cause for real concern.

 

a person is terminally ill if that person –

(a) has been diagnosed by a registered medical practitioner as having an inevitably progressive condition which cannot be reversed by treatment (‘a terminal illness’); and

(b) as a consequence of that terminal illness, is reasonably expected to die within six months. 2 (1)

As a previous blogpost explained, this is an unworkably vague criterion. But in any case, why is the cut-off at six months? Why is it only these people that are to be given lawful assistance in ending their own lives? This is surely discriminatory. The law, in effect, is putting these people in a category which is not worth protecting, and therefore is failing to recognise the equal worth of such people. The Assisted Dying Bill, were it to succeed, would be telling people in this category that society has given up on them; that they are no longer valued enough for the law to be concerned with their protection to the extent that it is concerned with others’. At the time when they need hope more than ever, the law is telling them that their case is hopeless.

‘[the [patient’s decision must have] been reached voluntarily…without coercion or duress.’

3 (3) (c)

One may wonder how such a thing could ever be accurately determined. After all, ‘coercion and duress’ can be extremely subtle forces, difficult to detect. We cannot simply rely upon the patient’s word that he or she is not under coercion or duress. Financial and familial pressures can exert a powerful influence on all of us, but perhaps even more so on the sick and the dying, and such pressures can remain virtually impossible to detect. Surely some terminally ill people will end up making this decision against their own will.

 

‘…the attending doctor and the independent doctor must be satisfied that the person making it has been fully informed of the palliative, hospice and other care which is available to that person.’

2 (4)

Here as elsewhere, we see the enormous trust that the Bill places in the medical profession. It relies upon the medical profession policing itself. Who else, after all, is going to determine whether a patient kills themselves in accordance with the criteria set out in the Bill? While we can assume that the majority of medical professionals are upright and conscientious individuals, can we trust that each and every medical professional will fully inform a patient of other options?

Furthermore, the Bill undermines the grounds upon which our ordinary trust in the medical profession is based. People look to doctors for cure and care, and they entrust themselves to them in the confidence that doctors are dedicated to those ends. But if doctors are not dedicated to these ends then a relationship of trust with them is no longer possible.

 

The attending doctor of a person who has made a valid declaration may prescribe medicines for that person to enable that person to end their own life.

4 (1)

The Bill refers to ‘medicine’ used to end one’s life. But this is a clear abuse of the term – ‘medicine’ being, of its nature, directed towards treatment and healing. In this case the lethal drug is not directed towards treatment and healing, but rather towards the death of the patient.

‘the attending doctor and the independent doctor, having separately examined the person and the person’s medical records and each acting independently of the other, must be satisfied that the person…has a clear and settled intention to end their own life which has been reached voluntarily’. 3 (3) (c)

The Bill makes no requirement whatsoever that the person who seeks to end their own life need undergo psychological assessment – which is not a small matter. There is no procedure to assess whether or not the patient is suffering from depression or some other psychological condition that will affect their decision-making capacity. All that is necessary is that two physicians determine that the patient ‘has the capacity to make the decision to end their own life’, and one might legitimately wonder how that might be determined as well. Again, the Bill places an awful lot of trust on the medical profession to police itself in these matters, yet as said, this Bill undermines the very foundations of that trust.

 

‘The Secretary of State may issue one or more codes of practice’.
8 (1)

And ‘the Secretary of State may specify in regulations’ what experience a doctor needs (3 (7)); ‘The Secretary of State may by regulations specify’ how the ‘medicines’ are to be administered (4 (7)); ‘the Secretary of State shall consult such persons as the Secretary of State thinks appropriate’ (8 (2)). A lot of the Bill’s implications are left to unknown circumstances.

 

Much has been made of the safeguards in the Bill, yet in addition to the issues that we have noted, legislation that permits assisted dying can never have adequate safeguards because the essence of such legislation is to make respect for the lives of the dying dependent upon the strength of their will to survive. The Bill represents society losing hope. And it detracts our efforts away from palliative care, a holistic solution which recognises the true value of the sick and the dying.

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You can still email peers and ask them to oppose this dangerous Bill.

Why doctors oppose Falconer: a medic explains

The author is a medical student currently at Oxford University.

The major organisations representing UK medical professionals have raised their voices in resounding opposition to Lord Falconer’s assisted dying bill. But why? Do they not care about suffering patients? While their position may continue to strike Lord Falconer’s supporters as odd, it turns out that, given their specialized knowledge about care at the end of life, they have very good reasons for opposing the bill.

The medical profession has always understood itself as a healing profession – and intentionally facilitating someone’s death is strikingly contrary to that goal. As put by the Royal College of Physicians: ‘Assisting suicide has been clearly and expressly outside our duty of care since Hippocrates and must remain so for the integrity of these professions and the public good’. The RCP is pointing out that assisted suicide is not medicine and if a physician is asked to participate in assisting a patient’s death, the request must be denied.

Treating assisted dying as ‘just another medical procedure’ threatens the integrity of the profession, insofar as the profession aims at health. Hippocrates included an explicit prohibition on the provision of deadly drugs for precisely this reason. If an explicit commitment to healing patients is lost, medicine is at risk of losing its way as a profession. It is the unwavering commitment to the health of her patients that gives the doctor a privileged position in society and the trust of her patients.

Consider also that the modern hospice/palliative care movement began in the late 60s – less than 50 years ago. Since that time palliative care has become much more widely available, physicians have refined it as an art, and they know that it will continue to improve. In a recent conversation, a palliative care physician told me that in his experience patients who express an interest in dying ‘if things get bad’ are afraid more than anything else. Once he explains that he will not be shy in using medications – pain relievers and others – to alleviate their symptoms, their fear subsides and they stop enquiring about being helped to die.

Medical professionals are resolved to continue to improve palliative care as an art so that the fears that often drive patients to ask about assisted dying can be better quelled with the promise of effective palliation. It is crucial that, while physicians realize that even with the best palliative care some may still be resolved to pursue suicide, ‘helping their patients to die’ is off the table, as it is out of the scope of their profession. Instead, their focus is on getting better at relieving pain and other symptoms and caring for their patients attentively at the end of life.

Moreover, while the bill attempts to build in protections for the vulnerable – based on prognosis, depression screens, etc. – doctors know better than anyone that these simply are not effective enough to provide reliable protection. Whatever the rationale for identifying having 6 or fewer months to live as the point at which a patient may choose assisted suicide, doctors know that providing a prognosis is more like predicting what Germany’s goal total will be over the course of the World Cup than it is like calculating how long it will take for a drug to be cleared from circulation. There are too many variables for it to be reliably precise.

A number of studies have reinforced this – and the further away one gets from the end of life the less accurate predictions tend to be. Whether or not the expected time remaining should be treated as important, physicians approach their estimates with humility and realize that it is shaky at best to base policy on them.

Even more importantly, doctors realize that they cannot reliably do what the bill asks them to do – screen out depressed patients. Depression comes with an impaired sense of judgment and often feelings of despair. Those who are depressed are ‘not themselves’ and thus, when they have suicidal ideation, it is our duty to protect them from themselves – not to facilitate self-harm. The legislation tries to combat this danger through screening, but screening for depression is not at all like measuring cholesterol, blood pressure, or blood sugar. The screening tests are based on patient responses and while somewhat reliable in patients who do not have an agenda, a depressed person set on gaining assistance in committing suicide could easily dupe the test. It would only require fairly basic knowledge about depression. Physicians – psychiatrists in particular – are aware of this and realize that even the best screening methods we have are unable to correct for this. As such, doctors are very much justified in pointing out that, even if it tries, the bill cannot reliably protect those with mental illness – thus making the legislation unsafe.

As we have seen, physicians have very good reasons for opposing Lord Falconer’s assisted dying bill. They recognize their profession to be one of healing and are unwilling to undermine its integrity by permitting the medicalization of suicide and codifying it in law. Their objections are also based on a strange mix of confidence and humility – confidence in their ability to improve palliative care and humility in recognizing their own limitations. Physicians realize that they are being looked to not only to irrevocably alter their profession, but also to ensure safeguards that they simply cannot provide.

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Keep Britain safe for the elderly and ill. Here’s how to write to the House of Lords.

5 things to know about the Falconer Bill

Lord Falconer’s Bill will come before the House of Lords for its second reading on the 18th July. Here are 5 things to know about the Bill:

(1) The Bill was put together by an independent Commission. The Commission on Assisted Dying was set up in 2010, chaired by Lord Falconer, and funded by Sir Terry Pratchett and Bernard Lewis. It aimed to investigate the “circumstances under which it should be possible for people to be assisted to die” and to “recommend what system, if any, should exist to allow people to be assisted to die”.

(2) The Commission itself has not been free from criticism. It was set up in response to two independent Parliamentary Select Committees, who examined the issue and concluded that no change in the current law was necessary. Around 40 leading medical, ethical and disability rights organisations boycotted the Commission’s call for evidence submissions due to a perceived bias in the way the Commission was set up and how it intended to conduct its research. The British Medical Association passed a motion in June 2011 disputing the Commission’s claim to impartiality and independence.

(3) The Bill in its current form aims to change the existing law so that terminally ill adults are provided “at their request with specified assistance to end their own life.” This is only possible where the person fulfills certain conditions: they must have a “clear and settled intention” to end their own life; they must be over 18 and have resided for more than one year in the UK; their illness must be confirmed as ‘terminal’ by a registered medical practitioner because it cannot be “reversed by treatment” and as a consequence of that illness the person is “reasonably expected to die within six months.”

(4) There are many arguments against the Bill. The Bill is clear in expressing the criteria required to be eligible for assisted suicide, but fails to provide guidelines on how to assess whether any of these criteria have been met. This poses a serious threat to the safety of vulnerable members of society. Evidence can be found in Oregon, where assisted suicide has been legal since 1998, of the dangers of not ensuring that psychiatric assessments are used to rule out judgment impairing mental conditions. A 2008 British Medical Journal paper concluded that Oregon’s law failed to protect mentally ill patients since cases of clinical depression had passed undiagnosed.

Another problem with the criteria in the Bill is that patients are required to have a terminal prognosis of six months or less. However a terminal prognosis is extremely unreliable, and the Royal College of GPs have said when estimates are being made for people living a matter of months, the “scope for error can extend into years.” The Bill would also have a very negative effect on clinical practice, since it would directly undermine patients’ right to life and medical care. Baroness Campbell wrote last year that the existing law rests on “the principle that we do not involve ourselves in directly bringing about the deaths of other people”. She argued that the Falconer Bill tries to replace that clear principle “with an arbitrary and permeable one.”

One of the greatest problems with this Bill is the false assumption that the value of life diminishes closer to death. The value of life never diminishes, and so the challenge is for us to offer support and love to the terminally ill so that they may have true ‘dignity in dying’, rather than try to provide a false dignity through control over the time and manner of death.

(5) The Bill will come before the House of Lords on the 18th July for the second time, the first of which was at the start of June. The second reading is the first opportunity for the members of the Lords to debate the main principles and purposes of the Bill. After that it goes through a couple of different stages where amendments can be made before a third and final reading in the Lords. All this takes place before the Bill can reach the House of Commons, Royal Assent and be passed. Now is therefore the time to write to Peers to make sure all the arguments for the case to keep the current law are heard, and to express your concerns and hesitations with the Bill.

(J.C.)

Who could possibly be against assisted suicide? Well, all of these people…

It is hard to doubt the good intentions of Lord Falconer, whose assisted suicide bill is being debated in the Lords on 18 July, two weeks from today. It is even harder not to be moved by the personal accounts of people who want to die, and their carers. But there is another side to this – one which has received less media coverage, but has convinced many of us that the Falconer Bill is extremely dangerous to public safety. When all is said and done, the Bill proposes to add ‘death’ to the services offered by the NHS and other health providers. And it creates a category of ‘lives not worth living’, which seems likely to expand over time. Baroness Warnock – as distinguished and respectable a supporter of assisted suicide as you will find – has said:

‘If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service… I think that’s the way the future will go, putting it rather brutally, you’d be licensing people to put others down.’

No wonder that a striking number of people and organisations, of many different kinds, have come out against assisted suicide.

Firstly, doctors. The British Medical Association’s crystal-clear policy, held consistently since 2006, is that assisted suicide threatens lives, weakens the ethos of the whole profession, and neglects the care which can be offered to patients in distress. The Royal College of Physicians is ‘firmly opposed’ to assisted suicide, arguing that ‘our duty of care is to work with patients to mitigate and overcome their clinical difficulties and suffering. It is clear to us that this does not include being, in any way, part of their suicide.’ The World Medical Association calls assisted suicide ‘unethical’; The Royal College of GPs reaffirmed its opposition in February.

The psychiatrist Baroness Sheila Hollins has argued that safeguards for a ‘clear and settled intention’ are practically impossible to implement. She adds: ‘Fear about dying calls for better palliative care services, a field in which Britain is already a world leader, and for a public that is better informed about the realities, rather than the scare stories, about death and dying.’

Secondly, people with disabilities. A recent statement signed by the respective leaders of Disability Rights UK and Scope warns: ‘We are deeply concerned that a change in the law will lead to disabled people – and other vulnerable people, including the elderly – feeling pressure to end their lives.’ The great Paralympian Baroness Tanni Grey-Thompson, another signatory to the statement, comments that reading the Falconer Bill sends ‘a chill down the spine’. As Baroness Jane Campbell and Richard Hawkes of Scope have both noted , Belgium’s child euthanasia laws are themselves a warning about the slippery slope.

Thirdly, parliamentarians. The Scottish Parliament voted against assisted suicide in 2010. The House of Lords rejected similar legislation to the Falconer Bill in 2009 and 2006.

Lord Winston, speaking in 2006, pointed out: ‘We cannot predict how people may feel about the future and to take that view is ultimately the most presumptuous thing that we can do.’

David Cameron is opposed: ‘My worry has always been about whether people will be unfairly pressurised.’ Nick Clegg, whose mother is Dutch, is also against changing the law: he remarks that the euthanasia laws in the Netherlands have ‘created a permissive culture, where people start going beyond the letter of the law.’

Fourthly, faith communities. The fullest statement came in a 2005 letter signed by the national leaders of the Buddhist, Sikh, Hindu, Anglican, Catholic, Evangelical, Muslim, Jewish and Greek Orthodox communities. Assisted suicide, they wrote, would ‘radically change the social air we all breathe by severely undermining respect for life’. And this is not only a conservative concern: the prominent liberal Anglican Giles Fraser has written movingly in his Guardian column against a new law.

Fifthly, legal experts. An exhaustive report by Lord Carlile, Baroness Butler-Sloss and Lord Brennan has concluded that changing the law is unsafe. In the words of Butler-Sloss, ‘The law is there to protect us all. We tinker with it at our peril.’

Finally – and this should count very heavily – there are all the voices of the terminally ill and the vulnerable, and their families and carers. Just read some of the comments on this petition against the Falconer Bill:

‘As a disabled person, the thought of starting on that slippery slope towards a right to die, rather than a right to live, is terrifying.’

‘This is literally a matter of life and death – changing this law could well lead to people like me being euthanized because someone else has decided I am terminally ill, and I’m so brow beaten that I agree with them to stop being a “burden”.’

‘I have just reached eighty, and can feel the pressure that I would be more use to some, if dead!’

If we won’t listen to the voices of the experts, we must at least listen to those who are frightened of coming under pressure to end their own lives.

Go here to write to members of the Lords about the bill.

(D.H.)