Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill has the same aims as Lord Falconer’s Assisted Dying for Terminally Ill Adults Bill, which it supersedes and which I wrote about in August. But Leadbeater’s bill has been extensively redrafted — no doubt with government help — and introduces enhanced safeguards.
My aim in writing this piece is to explain how the new bill would work and to assess whether it meets the concerns first raised by a former president of the High Court family division. I will leave others to deal with the ethical issues, the “slippery slope” argument and the bill’s compatibility with the human rights convention.
What the bill says
Leadbeater’s bill is, for the most part, drafted in clear, simple language. There are also explanatory notes, which include background material, policy developments and an assessment of the human rights position.
In this summary of the bill’s main provisions, I have adopted the drafter’s use of “their” as a synonym for “his or her”.
Assisted dying
Clause 1 of the bill acts as an introduction and table of contents. It says that a terminally ill person who meets a number of conditions may, on request, be provided with assistance to end their own life.
The main conditions are set out in detail later in the bill. As summarised in clause 1, they restrict assisted dying assistance to a person who
is terminally ill;
has the capacity to make a decision to end their own life;
is aged 18 or over;
has been ordinarily resident in England and Wales for 12 months;
is registered as a patient with a general medical practice in England or Wales;
has a clear, settled and informed wish to end their own life; and
has made the decision that they wish to end their own life voluntarily
and has not been coerced or pressured by any other person into making it
Terminal illness
Clause 2 says a person is terminally ill if
the person has an inevitably progressive illness, disease or medical condition that cannot be reversed by treatment; and
the person's death in consequence of that illness, disease or medical condition can reasonably be expected within six months.
The clause makes it clear that a person is not terminally ill only because that person has a mental disorder or a disability.
Initial discussions
Clause 4 introduces the stages that a person must go through before being provided with assistance to end their own life.
It’s envisaged that the terminally ill person will have a preliminary discussion with their general practitioner, though this is not compulsory.
The doctor may choose to raise the issue of assisted dying with the patient but does not have to.
The patient may raise the issue but, again, the doctor is not required to discuss it with the patient. In that case, the doctor must refer the patient to another doctor.
If a doctor does have the discussion with a patient, the doctor must explain
the person’s diagnosis and prognosis;
any treatment available and the likely effect of it;
any available palliative, hospice or other care, including symptom management and psychological support.
First declaration
Clause 5 sets out the first in a number of steps that must be taken — and safeguards that must be met — before a person can be provided with assistance to end their own life,
It introduces the concept of a coordinating doctor. The coordinating doctor is a registered medical practitioner who
has a specified level of training and experience;
has agreed to carry out the functions of a coordinating doctor;
is not a relative of the person seeking assistance;
does not believe they will benefit from the person’s death.
Under this clause, a person who wishes to be provided with assistance to end their own life must make a written declaration. The first declaration, as it’s called, must be witnessed by the coordinating doctor and a second witness. In it, the person seeking assistance must declare that, if eligible, they wish to be provided with assistance to end their own life.
First assessment
Clause 7 says the coordinating doctor must carry out an assessment as soon as reasonably practicable after a first declaration is made by a person.
In the first assessment, as it’s called, the coordinating doctor must assess whether the person is terminally ill — as defined in clause 2 — and meets the requirements in clause 1.
If satisfied that the requirements are met, the coordinating doctor must
sign a statement to that effect, specifying the person’s advanced and progressive illness, disease or medical condition;
give a copy to the person; and
refer the person to an independent doctor.
Second assessment
Clause 8 defines an independent doctor as someone who meets the same requirements as the coordinating doctor and also
has not provided treatment or care for the person being assessed in relation to that person’s terminal illness;
is not a partner or colleague of the coordinating doctor; and
did not witness the first declaration.
The independent doctor must carry out a second assessment. This cannot take place until seven days after the coordinating doctor’s statement has been signed — a lapse of time known as the first period for reflection.
If the independent doctor is satisfied that the person who made the first declaration
is terminally ill;
has capacity to make the decision to end their own life;
was aged 18 years or over at the time the first declaration was made;
has a clear, settled and informed wish to end their own life; and
made the first declaration voluntarily and has not been coerced or pressured by any other person into making it
then the independent doctor must sign a statement and provide copies to the coordinating doctor and the person who was assessed.
The assessing doctor
Clause 9 requires both the coordinating doctor who carries out the first assessment and the independent doctor who carries out the second assessment — referred to collectively as the assessing doctor — to comply with further requirements.
The two doctors must
examine the person and their medical records and make such other enquiries as the assessing doctor considers appropriate;
explain to and discuss with the person being assessed
the person’s diagnosis and prognosis
any treatment available and the likely effect of it
any available palliative, hospice or other care, including symptom management and psychological support
the nature of the substance that might be provided to assist the person to end their own life, including how it will bring about death;
discuss with the person their wishes in the event of complications arising in connection with the self-administration of an approved substance;
inform the person
of the further steps that must be taken before assistance can
be provided to the person to end their own life
that the person may decide at any time not to take any of those steps and of how to cancel the first declaration and any of those further steps;
advise the person to inform a registered medical practitioner from the person’s GP practice that the person is requesting assistance to end their own life;
as appropriate, advise the person to consider discussing the request with their next of kin and others they are close to.
To inform their assessment, the two doctors
must, if they have doubt as to whether the person being assessed is terminally ill, refer the person for assessment by a registered medical
practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question
may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a psychiatrist or another specialist
and must take account of any opinion provided by that specialist. It is not necessary to refer a person to a psychiatrist if it is clear to the assessing doctor that the person does not have the necessary capacity.
Second opinion
Clause 10 provides that if the independent doctor is not satisfied that the person meets the requirements for assistance, the coordinating doctor may refer the person to one other independent doctor. That doctor would also have to comply with the provisions set out above. There can be no third opinion.
Court declaration
Clause 12 deals with the judicial process.
If a person has made a first declaration and the necessary statements have been made by the coordinating doctor and the independent doctor, the person may ask the High Court to make a declaration.
Before making the declaration, the High Court must be satisfied that the requirements mentioned above have been met.
The High Court
may hear from and question, in person, the person who made the application for the declaration;
must hear from and may question, in person, the coordinating doctor or the independent doctor or both;
may hear from and question any other person; and
may call for a report on the person seeking the declaration.
A person may appear “in person” on a live video link or a live audio link. The High Court can decide what procedures to follow in these cases.
If the High Court refuses to make a declaration, the person seeking it may appeal to the Court of Appeal. If the High Court agrees to make a declaration, nobody can appeal against it.
Second declaration
Clause 13 provides for a second period of reflection. This is normally 14 days from the court’s declaration. If the coordinating doctor believes that the person will die within a month, the second period of reflection is 48 hours.
Once that period has passed, the person seeking assistance must make a second declaration confirming that they wish the assistance to be provided.
The coordinating doctor must make a further statement confirming that the requirements have been met.
Cancellation
Clause 14 allows a person who has made a first declaration or a second declaration to cancel it with immediate effect by giving notice to the coordinating doctor or to a doctor at the practice where they are registered.
Assistance
Clause 18 deals with the provision of an approved substance. This is the drug or other substance with which the person may end their own life.
The approved substance must be provided directly and in person by the coordinating doctor to that person.
The coordinating doctor may
prepare that substance for self-administration by that person,
prepare a medical device which will enable that person to self-administer the substance, and
assist that person to ingest or otherwise self-administer the substance
but the decision to self-administer the approved substance and the final act of doing so must be taken by the person to whom the substance has been provided. The coordinating doctor must not administer an approved substance to another person with the intention of causing that person’s death.
The coordinating doctor must remain with the person — though not necessarily in the same room — until
the person has self-administered the approved substance and the person has died — or the procedure has failed; or
the person has decided not to self-administer the approved substance, in which case it must be removed immediately by the coordinating doctor.
Substitute doctor
Clause 19 allows the coordinating doctor to appoint another doctor to provide the approved substance and carry out the functions just mentioned.
Final statement
Under clause 21, where a person has been provided with assistance to end their own life in accordance with the legislation and has died as a result, the coordinating doctor must complete a final statement recording the details. This will be kept with the person’s medical records.
No obligation
Clause 23 says no medical practitioner or health professional is under a duty to provide assistance under the legislation.
Suicide Act
Clause 24 amends the Suicide Act 1961 by providing an exemption to the offence of encouraging or assisting suicide for those who comply with the new legislation or can prove that they took all reasonable steps to do so.
Coercion
Clause 26 says that a person who, by dishonesty, coercion or pressure, induces another person to make a first or second declaration, or not to cancel such a declaration, or to self-administer an approved substance, commits an offence punishable with up to 14 years’ imprisonment.
Falsification
Cause 27 creates new criminal offences relating to documentation. An offence committed with the intention of causing the death of another person is punishable with life imprisonment. The maximum in other cases is five years.
Monitoring
The remainder of the bill deals with regulations for dealing with approved substances; inquests and death certificates; codes of practice; guidance from chief medical officers; monitoring; and reviewing the legislation after five years.
What’s new?
There have been a number of changes since Falconer’s bill was published in July. Some are matters of drafting: death is caused by an “approved substance” rather than “medicines”.
Others relate to timing: there was no “first period of reflection” in Falconer’s bill and the period between the consent of the High Court and self-administration of the medicine would have been 14 days — or six days if death was expected within a month.
The main practical difference is in the requirements that must be satisfied by the two doctors. Under Falconer’s bill, the perfusion seeking assistance could have approached any “suitably qualified registered medical practitioner”. The new bill makes it clearer that a coordinating doctor will be someone who specialises in providing assistance of this sort.
The main legal difference is that there are now detailed requirements that must be satisfied before the High Court can make a declaration.
Munby’s concerns
If this legislation is passed by parliament, it will be the job of a future president of the High Court family division to make arrangements for declarations to be granted under what is now clause 12.
Serving judges do not normally comment publicly on controversial issues, though they may provide advice while legislation is being drafted to ensure that it meets its objectives.
Sir James Munby was the most senior family judge in England and Wales from 2013 to 2018. He has already commented in detail on Falconer’s bill and I published his assessment at the beginning of this month.
Some of his criticisms have been addressed by Leadbeater’s bill but many still stand. A declaration could still be made by a “deputy district judge of the principal registry of the family division” — although rules of court could specify that these should be issued only by a serving High Court judge or an appeal judge.
Leadbeater’s bill does not say whether the High Court hearing would take place in public or in private. Nor does it specify whether the person seeking assistance could apply for anonymity. Would the court publish reasons in each case or merely the declaration? Would the two doctors be anonymised?
In deciding whether the law’s requirements have been met, the High Court may hear from the person applying for a declaration and any other person. That must include someone who can give evidence that the requirements have not been met — a relative or friend who believes there has been coercion, for example.
But how is that person to know that the case is coming to court, especially if a case is heard at short notice? Will cases be listed by name? How will the court know that other witnesses should be called?
The person needing assistance will require legal representation if the courts are to function efficiently. Legal advice will certainly be needed on an appeal. Presumably the Court of Appeal will need to appoint a “friend of the court” to put the counter-arguments. Will there be public funding for those seeking assistance?
Munby said last month that we faced “an impossible choice: between an open and transparent process that may deter those for whom the scheme is designed and a secret process destructive of the integrity of the scheme and corrosive of the judicial function”.
Update 1030: He has now written a detailed critique of Leadbeater’s bill which you can read here.
Thank you for this informed view on the assisted dying billl. My personal view is completely opposed to this bill. As a Roman Catholic I found it incredibly hard to sign the hospital document requesting the relevant medical personnel to switch off the machines that were keeping my father in a permanent coma/vegetative state. This situation I see as being different as there was no possibility of my father ever regaining conscienceness but this bill seems to be seeking to terminate a viable life. There are alternative palliatives that could be used.
Kim Leadbeater has, I think, made a huge tactical error in aiming for a bill which, in her own words, provides "the strictest safeguards anywhere in the world".
Those who are morally opposed to assisted dying will never be satisfied (and they are entitled not to be, if their objections are grounded in a moral belief). But, by seeking to address the arguments that opponents have raised, the drafters have created more sticks with which to beat the bill.
The requirement for self-administration of the approved substance will devastate those whose illness has rendered them incapable of doing so (recall the case of Dianne Pretty, back in 2002, who suffered from motor neurone disease). The requirement for the person to be terminally ill will do nothing for those whose suffering is permanent and without any element which will cause death (recall the case of Tony Nicklinson, in 2014, who had “locked-in syndrome”).
Those restrictions in the bill will inevitably lead to calls for a widening, thereby fuelling the “slippery slope” arguments mounted by opponents. The restrictions may even result in withdrawal of support from those who want a better bill first time around in case there is no second chance in their lifetime.
Perhaps the drafter’s biggest mistake is the requirement for judicial involvement. The UK courts have been designed around an adversarial system and yet this bill introduces a process which has an applicant but no obvious opponent and is, therefore, an easy target for lawyers to pick holes in. Where there is no opponent to challenge the application, the process will inevitably attract criticism as being a rubber stamp and, where an opponent does exist, “How”, as Joshua says above, “is that person to know that the case is coming to court?”
If Parliament is against assisted dying, we must accept that until (if ever) Parliament changes its collective mind. But, if there is a majority in favour, Parliament needs a bill which unashamedly sets out a workable mechanism that it can vote into law.
[Additional thoughts here: https://simoncarne.substack.com/p/assisted-thinking-about-assisted-dying]