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 I?ve 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.
HOW THE CONSULTATION PROCESS WORKS:
This consultation is being launched in connection with a draft proposal which I have lodged as the first stage in the process of introducing a Member?s Bill. The process is governed by Chapter 9, Rule 9.14, of the Parliament?s Standing Orders and can be found on the Parliament?s website.
A minimum 12 week consultation period is required, following which responses will be analysed. Thereafter, a final proposal is lodged in the Parliament along with a summary of the consultation responses. Subject to securing the required level of support for the proposal from other MSPs and political parties, and the Scottish Government not indicating that it intends to legislate in the area in question, I will then have the right to introduce a Bill which will follow the legislative process: generally, scrutiny at Stages 1 and 2 by a Parliamentary Committee and at Stage 3 by the whole Parliament.
At this stage, therefore, there is as yet not a Bill, only a draft proposal for the legislation.
The role of this consultation in the development of my Bill is to provide a range of views on the subject matter of the Bill, highlighting potential problems with the proposals, identifying equalities issues, suggesting improvements, raising any financial implications which may not previously have been obvious and, in general, to assist in ensuring that the resulting legislation is fit for purpose. The consultation process for my Bill is being supported by the Scottish Parliament?s Non-Executive Bills Unit (NEBU) and will therefore comply with the Unit?s good practice criteria. The Non-Executive Bill?s Unit will also analyse and provide an impartial summary of the response received.
AIM OF THE PROPOSED BILL
BACKGROUND
It was suggested by some commentators that the defeat of the previous Bill in December 2010 was evidence that there was not general support for the introduction of some form of legislation to allow certain categories of people the right to obtain assistance in ending their lives, at a time of their choosing, if they found their lives had become intolerable.
However, from the correspondence and comments that I have received, I believe that most people are convinced of the need for such legislation and for this reason I have decided to look again at introducing a Bill into the Scottish Parliament. Those with faith based objections and some groups representing disabled people were deeply opposed to any move towards legalisation of assisted suicide. However, during and after the discussions on the last Bill, I met many individuals at odds with their church?s position, and people who disagreed with what was being said on their behalf by campaigning groups.
I accept that protection needs to be afforded to those who might be perceived to be vulnerable to coercion or pressure that causes them to feel that they have become a burden to others. I have tried to improve this part of the process (i.e. the criteria that must be satisfied before a person can request assisted suicide). I have also introduced the idea of a registration process. Quite simply, this will mean that any person can be absolutely sure that they will not require to involve themselves with this new Bill. My new Bill will also be limited to assisted suicide only and will not permit voluntary euthanasia.
Around the world there is growing pressure for change in the laws governing assisted suicide. People are living longer and being kept alive longer, which is a testament to advances in medicine and palliative care. However, this has led to those with terminal illnesses or other conditions sometimes being forced to endure lives that they believe have become intolerable.
Autonomy of choice is the central tenet of my proposal. I believe that each of us has the same right to exercise choice and take responsibility for the manner of our death as we do with all other actions during our lifetime. I accept that such a decision is subjective but I remain of the opinion that only the person concerned, assuming they have full capacity, has the right to decide whether their life has become intolerable. The Committee looking at my previous Bill held a very useful session exploring these issues in some detail.
Comments on
Scottish Parliament Proposed Assisted Suicide (Scotland) Bill - Consultation by Margo MacDonald MSP
Introductory comments
The Royal College of Physicians of Edinburgh (RCPE) is a very “broad church” and includes within its Fellows and Members doctors from a diverse range of medical disciplines, including palliative care. The College has responded previously to related consultations and has participated in public and professional engagement activities (including “hot topic” events) to stimulate informed debate on this very complex and challenging subject. College views have also been influenced by the informed perspective of our lay advisers.
At this time the College takes no organisational stance on the merits of legislating for assisted suicide, recognising that Fellows and Members will have their very personal perspectives and that it will be for the Scottish Parliament to determine the fate of this proposed Bill, informed by public opinion and the views of those who will have a role in implementation.
Doctors have a professional responsibility to protect the interests and respect the wishes of their patients; it is in this spirit that the College identifies issues requiring greater clarity and identifies expected practical difficulties enacting the current proposals, as we understand them. The following comments are provided in response to the individual consultation 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.
As outlined above, the College takes no organisational stance on the general aims of the proposed Bill.
Q2. What do you see as the main practical advantages of the legislation proposed? What (if any) would be the disadvantages?
The College would like to comment on the following issues from the point of view of their practical implementation:
Registration with a medical practice in Scotland: this proposal seems restrictive as it does not allow for registration with a medical practice in the UK for patients who have moved from England, Wales or Northern Ireland to be looked after by family or friends living in Scotland.
Additionally, there is no indication of the time-frame that a patient would need to be registered at a medical practice in Scotland before seeking assisted suicide, which would need to be clarified in order to prevent “end of life tourism”.
Lethal medication: If the legislation is brought forward, it should be specified what the lethal prescription will be; what side effects the patient is likely to experience and how rapidly it is likely to cause death. Additionally, there will need to be guidance provided on what action to take if a lethal prescription is issued but not used by the patient at the appointed time: Can the prescription be retained or does it need to be returned immediately to the issuing pharmacist? What arrangements would be in place to ensure the safety of the patient and others if this is, for example, out of hours or over a bank holiday weekend?
Provision of medication: this is a key point for doctors in this document and for the process of assisted suicide. Page 16 states that:
“If a valid second request is made, then it would be expected that the person’s doctor would write a prescription for lethal medication, for dispensing by a pharmacist.”
The ongoing consequences of this action for the family and the ‘person’s doctor’ have perhaps not been fully recognised in these proposals. If the doctor is the general practitioner it is likely that he or she will continue to look after the family, neighbours and friends of the person who has committed suicide. It is possible that relationships will remain on good terms but the possibility that the professional relationship between that community and the doctor will be detrimentally affected is a prospect that needs to be considered.
Medical involvement: although “direct physician assistance” has been removed from the proposals, doctors would still be required to judge if a patient was an appropriate candidate for assisted suicide. It is not clear if there would be a requirement for an existing relationship between the doctor and patient, and therefore greater knowledge of individual circumstances.
On page 11 there is a suggestion that there is no reason why medical doctors should not train as licensed facilitators to assist suicide. This has the same issues as the wider reaching problems associated with ‘Provision of medication’.
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.
Definition of a terminal illness or terminal condition: this is a vague statement that is open to interpretation. Life is terminal in nature: everyone dies. How will it be agreed upon that a patient has a terminal condition or illness, and who will be responsible for deciding that the patient fulfils this criterion? Neurological conditions in particular can frequently have an uncertain prognosis and estimating the life expectancy of a patient is not an exact science.
Definition of intolerable: the term “intolerable” is not defined in the proposals and again is open to interpretation. Is it possible for a doctor to objectively judge whether a patient’s life is intolerable? The House of Lords Select Committee on Lord Joffe’s Assisted Dying for the Terminally Ill Bill in 2005 suggested that terms “unrelievable” or “intractable” suffering or distress were used, rather than ‘unbearable” as a criterion, which like “intolerable” is ill-defined.
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 principle of pre-registration is a useful addition to the proposals on assisted suicide. This would help in providing evidence of a person’s general view about assisted dying, though it may not be possible to fully remove the potential for coercion from any proposals on assisted suicide or end of life assistance.
Pre-registration should be regularly reviewed on the patient’s records to ensure the pre-registration document still reflects the patient’s wishes. Individuals may change their opinion and attitudes as they adjust and adapt to disabilities and reset their views on quality of life. This change may be influenced by contact with palliative care services.
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)?
The College feels that a doctor simply checking qualifying conditions and eligibility would not be adequate for the first formal request. The doctor involved should have been trained to ensure that they have adequate understanding of the prognosis for the large variety of conditions likely to be presented and the range of palliative care available. The second doctor should have undergone similar training.
The fourteen-day interval between requests seems to strike a balance between the need for an efficient process, and the need to decrease the potential for rash decisions.
Q6. Do you think a time-limit of 28 days (or some other period) is an appropriate safeguard against any deterioration of capacity?
There is some concern that having a time limit at all may result in coercion - for example, someone who has qualified but has second thoughts may feel pressured to go ahead with assisted suicide as the deadline approaches. If there is any concern about capacity then a requirement for a capacity assessment could be introduced within 24 hours of the assisted death.
It should also be noted that it is not uncommon for capacity to alter much more quickly than 28 days, particular in patients with advanced disease processes. Sometimes the deterioration of capacity is temporary if it is related to medication, metabolic abnormalities or infection.
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?
The regulation of both the licensed facilitators and the organisations providing their training needs to be more robust than currently described in the proposed Bill.
What would be the procedure if, despite the best intentions of the licensed facilitator and the patient, the lethal medication was wrongly administered? At what stage should the trained facilitator be expected to intervene if the medication was clearly failing and when after “death” – which they cannot certify - should they be expected to seek medical help to certify death – will the police and/or Procurator Fiscal have a role as it will be an unnatural death? There is an issue as to how the licensed facilitator will confirm death, as unless they are medically qualified they cannot certify death.
Q8. What sort of documentation and evidence is likely to be required? In particular, how important is it that the process is filmed?
There is no mention in the proposals of the processes for pronouncing life extinct or for certification of death. These are important details that need to be addressed.
There is no mention of who would own the rights of the film of an assisted suicide, who would be responsible for its storage and how this would fit with data protection legislation. This all needs clarification.
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?
There would be financial implications on the NHS from this proposed Bill, for example, GP and consultant time for those involved in this process. This would include time for training; performing assessments; discussions with patients; audit and record keeping. Other financial implications include: training of facilitators, payment of facilitators, and others who act as assessors in stage one and two.
There is no mention on what financial protection would be in place for dependents or minors where the person seeking assisted suicide is their parent or guardian. Insurance policies and pensions are usually void in cases of suicide, and this issue should be taken into account and examined further.
There may be financial implications from indemnity issues for all health professionals and the licensed facilitators connected with assisted suicide, which would also need to be addressed.
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?
Some adults who meet the eligibility requirements and wish to have an assisted suicide could be prevented from doing so if the method of assisted suicide is limited to swallowing a lethal prescription. There are circumstances in which patients with cancer or neurological conditions are unable to swallow medication, for example, oesophageal cancer or external compression of the oesophagus by enlarged nodes. Other patients may not be able to raise their arm to their mouth in order to consume the lethal medication. This will need to be taken into consideration so not to discriminate against these groups of people.
In addition, there may be geographical inequalities as those patients who may wish to request an assisted suicide in small and isolated remote and rural communities may have difficulty finding a medical professional who does not object on ethical or faith based grounds to the principle of assisted suicide.