Final Version As Lodged
Final Version As Lodged
Final Version As Lodged
Consultation by
CONTENTS PAGE
Page 4
Page 5
Page 6
Page 7
Current Law
Page 9
Other Jurisdictions
Page 11
Page 12
Page 18
Financial Implications
Page 18
Page 19
Questions
Page 20
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FOREWORD
On 1 December 2010, the Bill I sponsored on assisted dying (the End of Life Assistance
(Scotland) Bill) was defeated at Stage 1. However, the volume of correspondence Ive
received and the continuing public interest, stimulated by some high profile statements
in favour of the general principal of the Bill indicates a consistent level of support for
individuals suffering a terminal illness or condition for whom life becomes intolerable, to
have the legal right to request help to end their life before nature decrees.
Advances in palliative care and medical practice mean that most people are likely to
experience the peaceful and dignified end to their life that we all seek. Unfortunately this
is not true in every case and it is their circumstances that my proposed bill is intended to
assist.
For some people, the legal right to seek assistance to end life before nature decrees is
irrelevant. Their faith or credo forbids such action. Although I take a different point of
view I absolutely defend their right to refuse to actively participate in the processes of
assisted suicide. Equally, I defend the right of a person, facing death imminently or for
whom life has become intolerable, as a result of their condition, to seek help to end their
life at a time of their own choosing. The proposed Bill would enable, not compel.
There was a wide-ranging and also very specific consultation on the last Bill. Many of
the moral and philosophical points that emerged during debate are unchanged. I do not
intend to consult further on these general issues, but would prefer to use this
consultation to investigate expert and lay opinion on the specifics of the process now
proposed. But should any person or group feel that their particular interest requires
more consideration, they are invited to submit written responses.
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http://archive.scottish.parliament.uk/s3/committees/endLifeAsstBill/or-10/ela10-0502.htm
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The Policy Memorandum for the End of Life Assistance (Scotland) Bill contained a
range of polling evidence that pointed to enduring public support for a change in the law
regarding assisted suicide3. There has been no evidence produced since the fall of that
Bill to suggest that there has been any diminution in this support.
My office continues to receive letters, emails and phone-calls from across the country
from people recounting personal and family experiences which above all convince me
that I am correct in attempting a change in legislation by introducing another Bill to the
Scottish Parliament.
I also very much welcome the recent report by the Commission on Assisted Dying4
chaired by Lord Falconer. We have the same objective but the details of how we reach
it differ. This is hardly surprising given that considerable debate has been ongoing in
Scotland since my first proposal in 2008.
Current Law
In Scotland, as in other parts of the UK, it is not a criminal offence to commit suicide, but
the law does not permit another person to encourage or assist in an act of suicide.
In England and Wales, it is an offence (subject to a penalty of up to 14 years
imprisonment) to encourage or assist a suicide or attempted suicide (section 2 of the
Suicide Act 1961). Prosecution for such an offence requires the consent of the Director
of Public Prosecutions (DPP). The law relating to the DPPs role has been clarified by
two high-profile cases. In the case of Diane Pretty, who suffered from motor neurone
disease and was unable to end her own life without assistance, the DPP refused to give
an advance undertaking not to prosecute Ms Prettys husband should he assist her in
ending her own life; and the House of Lords upheld this refusal against a challenge on
ECHR grounds.
The other case involved Debbie Purdy, who suffers from multiple sclerosis and wished
her husband to be able to help her travel to Dignitas in Switzerland without fear of
prosecution on his return. The DPP initially refused to issue any guidance on the
approach that would be taken to the prosecution decision, but the House of Lords ruled
that the DPPs refusal contravened ECHR. Accordingly, the DPP issued guidelines
(interim version in 2009, final version 2010) aimed at clarifying the approach to cases of
encouraging or assisting a suicide.5 However, these guidelines do not have the force of
law, prosecution remains at the discretion of the DPP and the guidelines have no direct
bearing in Scottish cases.6
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Where CPR is not in accord with the recorded, sustained wishes of the patient
who has capacity for that decision.
Where CPR is not in accord with a valid applicable advance healthcare directive
(living will). A patient's informed and competently made refusal which relates to
the circumstances which have arisen should be respected.7
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I wholly welcome this acknowledgement that a competent patient can make a positive
decision about their end of life experience in the specific circumstances to which these
guidelines relate. I believe that the principle they establish is very relevant to my current
consultation.
It also remains the case that where a patient is under sedation, or unable to
communicate their wishes regarding their treatment, the medical team can effectively
make a clinical decision not to resuscitate, or stop treatments that may prolong life, the
consequence of which is that the patient will die. I take no issue with this. I believe that
this forms part of what I would expect to be proper palliative end of life care for a
patient.
Other Jurisdictions
A very full explanation of the provisions for assisted suicide elsewhere was provided by
the Scottish Parliaments Information Centre (SPICe) during the passage of my previous
Bill and it would be informative for readers to re-read this document.8
Evidence gathered from jurisdictions that allow assisted suicide has led me to conclude
that a template modelled on the systems operated by the State of Oregon and by
organisations operating in Switzerland offer a combination of what I perceive to be best
practice.
A recurring argument against legalising assisted suicide is that it will somehow lead to
the vulnerable and the frail being coerced into ending their lives. Evidence from Oregon
clearly refutes this. Assisted suicide records now stretch back 13 years and the latest
State records from 2010 record that 65 persons died as a result of ingesting medication
prescribed under their Death with Dignity Act (DwDA). The report notes that:
As in previous years most were white (100%), well educated (42.2% had at least
a baccalaureate degree) and had cancer (78.5%) the most frequently
mentioned end-of-life concerns were: loss of autonomy (93.8%) decreasing
ability to participate in activities that made life enjoyable (93.8%) and loss of
dignity (78.5%).9
The DwDA lays out clearly that those who wish to end their lives must do so unaided.
Whilst a doctor is not precluded from being in attendance when this is done, most
choose not to be. In 2010 only 10% of doctors remained present at the end.
Available at:
http://www.scottish.parliament.uk/SPICeResources/Research%20briefings%20and%20fact%20sheets/SB
10-51.pdf
9
Available at:
http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Page
s/ar-index.aspx
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it is simple to understand
it is patient led
it is self-administered.
Both systems operate very well and there is no evidence that I can find of any
malpractice in either jurisdiction. Evidence given by witnesses from Oregon to the End
of Life Assistance (Scotland) Bill Committee strongly supported the notion that there
was no evidence at all of the slippery slope, or that the vulnerable were in any danger
of being coerced into ending their lives. In oral evidence, Professor Linda Ganzini
(Oregon Health and Science University) stated:
it does not appear that illegal assisted suicides still take place. By the way,
any physician found to be involved in such practices would suffer enormous
negative repercussions. Physicians who go outside the law take a huge risk,
given that there is a way of staying within it.11
Another witness from Oregon, Deborah Whiting Jacques of the Oregon Hospice
Association said:
We are not talking about the disenfranchised meek who are requesting to use
the Death with Dignity Act 1997 The family is not pushing them; usually, the
10
Website: http://www.dignitas.ch/index.php?lang=en
Scottish Parliament Official Report, End of Life Assistance (Scotland) Bill Committee, 7 December
2010, col 64: http://archive.scottish.parliament.uk/s3/committees/endLifeAsstBill/or-10/ela10-0402.htm.
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family is holding back. They are happy to take care of them and are saying,
Don't do this. I do not see coercion as an issue.
End of Life Assistance (Scotland) Bill12
I do not intend to continue referencing the previous Bill. There is a very full record of it,
its accompanying documents and the record of the deliberations of the ad hoc
committee set up to scrutinise it. There are some aspects of the previous Bill that I have
retained in this new proposal, for example the requirement for two separate
examinations by a doctor, and the waiting time requirements between requests.
The previous Bill was robust but cumbersome and if passed, I believe that very few if
any people would have been able to negotiate all its hurdles in their quest for a peaceful
death. With the benefit of that experience the new proposal, whilst being equally robust
aims to provide a clearer, more straightforward process.
For example:
12
Scottish Parliament Official Report, End of Life Assistance (Scotland) Bill Committee, 7 December
2010, col 69: http://www.scottish.parliament.uk/parliamentarybusiness/Bills/21272.aspx.
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It will give any person who meets the eligibility requirements the right to request
medication to end their own life.
It will set out a straightforward process for a qualifying person to follow, involving
initial registration followed by two formal requests.
It will decriminalise the actions of those who assist a qualifying person to end
their own life within the parameters set by the Bill.
Q1. Do you support the general aim of the proposed Bill (as outlined above)?
Please indicate yes/no/undecided and explain the reasons for your response.
Q2. What do you see as the main practical advantages of the legislation
proposed? What (if any) would be the disadvantages?
Eligibility Criteria
After consideration of all the arguments made in relation to the criteria in my previous
BiIl, I now propose the following eligibility requirements which, I believe, are simpler and
clearer namely that a qualifying person must:
be capable (i.e. have the mental capacity to make an informed decision using
the definition established by the Adults with Incapacity (Scotland) Act 2001)
be aged 16 or over
I have considered carefully the arguments advanced during discussion of the previous
Bill about a minimum age of 16, but continue to believe it is the appropriate age at which
to allow a person to make an informed decision of this sort. I no longer propose to
extend eligibility to people who are permanently physically incapacitated to such an
extent as not to be able to live independently if their condition is not terminal.
Q3. Do you consider that these suggested eligibility requirements are
appropriate? If not, please explain which criterion or criteria you would like to
see altered, in what ways, and why.
Process
My aim has always been to allow for a process which, while providing appropriate
safeguards, is proportionate and not unduly cumbersome. As with the previous Bill, I
continue to believe that a two-step formal request process should form the main
element of the process to be followed. However, I also now propose an initial step
involving pre-registration. This has been added to address an argument that is made
time and again, namely that any move to legislate for assisted suicide will place a
burden of fear on the vulnerable, elderly and disabled.
The existing law should already be sufficient to penalise anyone who put inappropriate
pressure on a vulnerable person to end their own life. However, I would be prepared to
consider including in my Bill a new offence provision if a case can be made that this
would provide an additional safeguard.
I do not believe that vulnerable people would be put at greater risk by the legalisation of
assisted suicide; however, I recognise that the perception of that risk may cause some
people fear or anxiety and this is something I would clearly wish to avoid.
Pre-registration
Pre-registration would consist of signing a simple declaration to the effect that the
person regards assisted suicide as an option he/she may or would wish to pursue. The
declaration would also state that the person is signing it freely without having been put
under any inappropriate pressure to do so; and is aware that it doesnt commit them to
taking any further steps towards an assisted suicide and that it can be rescinded at any
time.
A copy of the signed declaration would be given to the persons general practitioner and
recorded in their notes, a duplicate of which would be retained by the person.
The Declaration Document
There will be a standardised document, made widely available which a person can
complete at any time. The wording of this declaration can be clarified at a later stage,
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however if it is standardised, there will be no ambiguity in the minds of either the person
completing the document, or the doctor receiving it, as to its intention or validity.
This declaration will state:
the person is giving advance notice that they may, at some future point, make an
application for an assisted suicide under the terms of the relevant legislation
is making the declaration voluntarily
understands the nature of the declaration
is not acting under any undue influence in making the declaration.
In addition this declaration will be signed by two witnesses confirming that to the best of
their knowledge and belief the requesting person:
With a properly completed declaration at this preliminary stage, a person who is already
ill with a qualifying condition may approach their doctor to make a first formal request, or
more likely, may simply lodge this document in anticipation of a possible first formal
request at a future date. I liken this to an insurance policy, allowing people to carry on
living, with the comfort of knowing that if things do get bad for them, then they have
already made a clear legal declaration of their intentions.
My view is that whether the pre-registration declaration is lodged by a person who is fit
and well, or by an ill person, it should be actively managed by the person who lodges it.
I am happy to consult on this point, but believe that after a period of time, a person
would be required to re-confirm its validity. This could be done simply with the addition
of a note to that effect on their medical file.
I see two benefits arising from this. Firstly, it can serve as an enduring record of a
persons wish in the matter and secondly, if a person has had such a request on their
medical files for a period of time, the doctor would be able to take this into consideration
when looking at all the circumstances of a request for an assisted suicide, and this may
make it easier for them to reach a decision in any individual case.
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Finally, without any such declaration on their medical files, those who fear the
introduction of this legislation will be secure in the knowledge that without any registered
declaration, they need have nothing to do with it.
Q4. What is your general view on the merits of pre-registration (as described
above)? Do you have any comments on what pre-registration should consist of,
and on whether it should be valid for a set period of time?
The first formal request
With a valid registration a person may approach a doctor and make a first formal
request for an assisted suicide. (If the persons own doctor has a faith-based or
ethical objection to assisted suicide, they would not be obliged to consider it, but
would be required to refer the person to another doctor). The request would be
in writing, and be signed and dated by the requesting person. The doctor would
be required to check whether the various qualifying conditions had been met, and
then refer the request to a second doctor for assessment and verification. If
satisfied, each doctor would complete a declaration to that effect and attach it to
the request, and sign and date it.
The qualifying person would be required to wait for a minimum of 14 days before
making a second formal request.
During the waiting period, alternatives may be explored and offered to the person
for example, changes in medical routine, counselling, hospice and respite care.
However, the person would be under no obligation to consider any or all of these
options.
At any time from the 14th day to the 28th day after the first formal request, the
person could make a second formal request. Like the first request, this would
have to be in writing and be signed and dated, and would require written
confirmation from two medical professionals that all the qualifying conditions
continue to apply.
As part of the second formal request, a qualifying person could be asked to sign
a form that they consent to the filming of their death as part of the process of
safeguards.
If a second formal request is not made within 28 days, the process would be reset and it would be necessary to begin the process afresh by making a further
first formal request. There is no limit to the number of times that a person may do
this.
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The requirement of the previous Bill that each formal request be witnessed by
two other people not connected with the process has been removed. On
reflection I do not think that this step adds anything to the process and questions
the integrity of the medical professionals involved.
Q5. Do you have any comment on the process proposed for the first and second
formal requests (for example in terms of timings and safeguards)?
Provision of medication
If a valid second request is made, then it would be expected that the persons
doctor would write a prescription for lethal medication, for dispensing by a
pharmacist. (This will not be a requirement of the Bill, and could depend on UKwide professional bodies amending relevant guidelines)
I have always stressed that patient autonomy and competency is at the heart of
my proposal. I am aware that as the end of life approaches, some people may
lose full capacity. Therefore, as a particular requirement of this proposal, an
assisted suicide would only be lawful if carried out within 28 days of the second
formal request. If this time-limit is not met, the person will be required to return to
the start of the formal process and make a first formal request to their doctor.
Q6. Do you think a time-limit of 28 days (or some other period) is an appropriate
safeguard against any deterioration of capacity?
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Whilst the process of the first and second request is being followed, the
qualifying person would be provided with a list of licensed facilitators whom they
could contact. The role of the facilitator would be to:
o collect the medication from the dispensing pharmacist and convey it to the
person (and return to the pharmacist any medication not used within a
specified period)
o stay with the person throughout the remainder of the process and assist
them in any way necessary to enable the person to take the medication
correctly but will be forbidden to administer the medication
o with the appropriate consent, film the process for the legal record
o fill in the necessary final paperwork and report the persons death to the
police.
It would be up to the person whether anyone other than the licensed facilitator
(such as a relative, or the persons doctor) was also informally present at the time
of death.
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Q7. Do you agree that the presence of a disinterested, trained facilitator should
be required at the time the medication is taken? Do you have any comments on
the system outlined for training and licensing facilitators?
Q8. What sort of documentation and evidence is likely to be required?
particular, how important is it that the process is filmed?
In
The Prescription
There is no evidence from either Oregon or Switzerland that a lethal prescription has
been wrongly used or taken by anyone other than for whom it was intended. However, it
is the case that there will be in circulation prescriptions for lethal doses of medication. I
believe that having the licensed facilitator collect the medication and convey it to the
qualifying person provides an adequate record of the process. I would also envisage
facilitators being trained in the importance of returning any unused medication to a
pharmacist.
Financial implications of the Bill
There will be some costs to the Scottish Government in producing literature and
guidance both for the public and for medical professionals. I do not expect that the
training of facilitators will be carried out by the Scottish Government; this task will be
undertaken by organisations who may apply to be recognised as providing such
courses.
However, there will be a cost in monitoring the courses and the quality of the facilitators
who go through this training. I do not expect that Scottish Government to hold any
central database of trained facilitators but will be expected to direct any queries about
suitably qualified individuals to whichever organisations have them.
Q9. What is your assessment of the likely financial implications of the proposed
Bill to your organisation? Do you consider that any other financial implications
could arise?
Equalities Issues
An initial Equalities Impact Assessment has been undertaken and has informed some of
the thinking and questions posed in this consultation. For example, the impact on age
as a qualifying criterion and the removal of eligibility of those people who live with a
non-progressive disability.
Q10. Is the proposed Bill likely to have any substantial positive or negative
implications for equality? If it is likely to have a substantial negative implication,
how might this be minimised or avoided?
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QUESTIONS
Q1. Do you support the general aim of the proposed Bill (as outlined above)?
Please indicate yes/no/undecided and explain the reasons for your response.
Q2. What do you see as the main practical advantages of the legislation
proposed? What (if any) would be the disadvantages?
Q3. Do you consider that these suggested eligibility requirements are
appropriate? If not, please explain which criterion or criteria you would like to
see altered, in what ways, and why.
Q4. What is your general view on the merits of pre-registration (as described
above)? Do you have any comments on what pre-registration should consist of,
and on whether it should be valid for a set period of time?
Q5. Do you have any comment on the process proposed for the first and second
formal requests (for example in terms of timings and safeguards)?
Q6. Do you think a time-limit of 28 days (or some other period) is an appropriate
safeguard against any deterioration of capacity?
Q7. Do you agree that the presence of a disinterested, trained facilitator should
be required at the time the medication is taken? Do you have any comments on
the system outlined for training and licensing facilitators?
Q8. What sort of documentation and evidence is likely to be required?
particular, how important is it that the process is filmed?
In
Q9. What is your assessment of the likely financial implications of the proposed
Bill to your organisation? Do you consider that any other financial implications
could arise?
Q10. Is the proposed Bill likely to have any substantial positive or negative
implications for equality? If it is likely to have a substantial negative implication,
how might this be minimised or avoided?
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subsequent Bill may have access to the full text of your response even if it has not been
published in full.
There are a few situations where not all responses will be published. This may be for
practical reasons: for example, where the number of submissions we receive does not
make this possible or where a large number of submissions are in very similar terms. In
the latter case, only a list of the names of people and one response who have submitted
such responses would normally be published.
In addition, there may be a few situations where I may not choose to publish your
evidence or have to edit it before publication for legal reasons. This will include any
submission which contains defamatory statements or material. If I think your response
potentially contains such material, usually, this will be returned to you with an invitation
to substantiate the comments or remove them. In these circumstances, if the response
is returned to me and it still contains material which I consider may be defamatory, it
may not be considered and it may have to be destroyed.
Data Protection Act 1998
As an MSP, I must comply with the requirements of the Data Protection Act 1998 which
places certain obligations on me when I process personal data. Normally I will publish
all the information you provide (including your name) in line with Parliamentary practice
unless you indicate otherwise. However, I will not publish your signature or personal
contact information (including, for example, your home telephone number and home
address details, or any other information which could identify you and be defined as
personal data).
I may also edit any information which I think could identify any third parties unless that
person has provided consent for me to publish it. If you specifically wish me to publish
information involving third parties you must obtain their consent first and this should be
included in writing with your submission.
If you consider that your response may raise any other issues concerning the Data
Protection Act and wish to discuss this further, please contact me before you submit
your response.
Further information about the Data Protection Act can be found at: www.ico.gov.uk.
Freedom of Information (Scotland) Act 2002
As indicated above, once your response is received by NEBU or is placed in the
Scottish Parliament Information Centre (SPICe) or is made available to committees, it
is considered to be held by the Parliament and is subject to the requirements of the
Freedom of Information (Scotland) Act 2002 (FOI(S)A). So if the information you send
me is requested by third parties the Parliament is obliged to consider the request and
provide the information unless the information falls within one of the exemptions set out
in the Act, even if I have agreed to treat all or part of the information in confidence and
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to publish it anonymously. I cannot therefore guarantee that any other information you
send me will not be made public should it be requested under FOI.
Further information about FOI can be found at: www.itspublicknowledge.info.
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