Summary-of-written-evidence-submitted-to-the-Scottish-Parliament-Health-and-Sport-Committee-in-response-to-the-AS-Scot-Bill-2015

Summary of written evidence submitted to the Scottish Parliament Health and Sport Committee in response to the Assisted Suicide (Scotland) Bill Page | Contents Executive summary For Church and Society Committee of the United Reformed Church's Synod of Scotland .5 Dignitas Dignity in Dying Doctors for Assisted Suicide Friends At The End (FATE) Humanist Society Scotland My Life, My Death, My Choice Scottish Disability Equality Forum .7 Scottish Independent Advocacy Alliance Scottish Unitarian Association .8 World Federation of Right to Die Societies Against 10 Alzheimer Scotland 10 Anscombe Bioethics Centre 10 British Medical Association (BMA) 10 CARE for Scotland 11 Care Not Killing 12 Catholic Bishops’ Conference of Scotland 12 Children's Hospice Association 13 Church of Scotland Church and Society Council 13 Crown Terrace Baptist Church 14 Dumfries and Galloway Over 50’s Committee Meeting 14 Dumfries and Galloway Over 50’s Group Meeting 14 Equality and Human Rights Commission 14 Evangelical Alliance 15 The Faith and Order Board of General Synod of the Scottish Episcopal Church .15 Fellowship of Independent Evangelical Churches 16 Free Church of Scotland 16 Group of Palliative Care Physicians 16 Highland Hospice 17 Inclusion Scotland 17 Islamic Medical Association 18 Living and Dying Well 18 Muslim Council of Scotland 18 Page | Public Questions, Religion & Morals Committee of the Free Church of Scotland 19 Reformed Presbyterian Church of Scotland 19 The Royal College of Paediatrics & Child Health (RCPCH) 19 The Royal College of Physicians and Surgeons of Glasgow 20 Scottish Council on Human Bioethics 20 The Scottish Youth Alliance 21 Society for the Protection of Unborn Children 21 St Margaret of Scotland Hospice 22 Strathcarron Hospice 23 Salvation Army Scotland Office 24 Neutral 25 British Association for Counselling and Psychotherapy (BACP) 25 British Psychological Society 25 Community Pharmacy Scotland 26 East Dunbartonshire Social Work Group 26 East Lothian Council 27 Faculty of Advocates 28 General Pharmaceutical Council 29 Law Society of Scotland 29 Lord Advocate (Frank Mulholland) 30 Marie Currie 30 The J Kenyon Mason Institute for Medicine, Life Sciences and Law University of Edinburgh 30 NHS Forth Valley 31 North Ayrshire Council 32 Parkinson’s UK 32 Police Scotland 32 The Royal College of Physicians of Edinburgh 33 The Royal College of Psychiatrists in Scotland 34 Royal Pharmaceutical Society 34 Scottish Association for Mental Health 34 Scottish Ambulance Service 35 Scottish Council of Jewish Communities 35 Scottish Justices Association 36 Scottish Partnership for Palliative Care 36 Stirling Council 37 Together (Scottish Alliance for Children’s Rights) 37 Together for Short Lives 38 Page | Executive summary Reponses In total, 69 groups or organisations are listed as having responded to the consultation Of these, 11 agreed with the general purpose of the Bill, 32 disagreed and 26 organisations adopted a neutral stance or did not comment on the purpose of the Bill Stance of goups and organisations which responded to consultation Across all three categories – those for, against and neutral – there were a wide variety of groups and organisations, including charities, care providers, local authorities, religious groups and campaigning organisations For Against Neutral Key issues mentioned Across all responses there were a number of common observations and suggestions made about the Bill These included:  Concepts such as ‘life-shortening’ need to be defined in the Bill to qualify eligibility and to prevent potential abuse Although it is presumed most individuals will commit suicide by ingesting a lethal barbiturate, there are no restrictions on the method of suicide prescribed by the Bill  Unclear from the Bill how much assistance can be given by the facilitator   14 day window in which people have the opportunity to commit suicide may compel some people to act before they are ready (to avoid repeating the process)  A general view that the vulnerable or mentally ill may feel pressured or be coerced into requesting assisted suicide  Anyone requesting assistance should automatically undergo psychiatric assessment  People aged 16 years old are incapable of acting as a facilitator or making an informed choice to end their life (although no consensus in responses on age limit)  A general belief that palliative care in Scotland is inadequate and may suffer further if assisted suicide is legalised  Concern that legalising assisted suicide will lead to the legalisation of euthanasia Guidance on how medication is stored and how excess or unused substances are safely recovered, either after death or following the expiry of the 14 day period, is not included in the Bill  Assisted suicide could damage the relationship between doctor and patient  A ‘conscience clause’ is needed for professionals wanting to avoid participation  Guidance on facilitator record keeping and the body which will regulate the process is not included in the legislation  Questions about how much training facilitators will receive  Questions as to how far the Bill will conform with existing legislation  Page | For Church and Society Committee of the United Reformed Church's Synod of Scotland About: n/a Submission contact: n/a Key points:  Welcomes the removal of the disability criterion which some found offensive in the last proposal  Trusts that guidelines on lethal dosages and their storage and shelf life will be given  Foresees practical problems arising from facilitators having long periods when their services are not required o Envisage the process working in an urban environment, but believe some thought needs to be given to its application in rural and island communities  Wondered if it was envisaged that a facilitator should receive a fee Dignitas About: Swiss group which helps those with terminal illnesses and severe physical and mental illnesses commit suicide They have helped over 1700 people die in suicide clinics in Zurich Submission contact: Ludwig A Minelli and Silvan Luley Key points:  Dignitas feels that having to find two different registered medical practitioners, each acknowledging the request, would be a unnecessarily strict condition  Believes that a proposed 14 day waiting period is too long and may result in extended suffering for the patient Believes that the formal request(s) period should be used to explore and suggest alternatives such as changes in medical routine, counselling, hospice and respite care, etc., without the person having the obligation to consider these alternatives Notes that the term “suicide tourism” is often (mis)used Considers people from abroad coming to Dignitas not as suicide tourists but “self-determination tourists”  Recommends a dosage of 15 - 20 grams of Sodium Pentobarbital  Believes it is necessary to define more closely what role the police will have  Page | Dignity in Dying About: Dignity in Dying campaigns for terminally ill, mentally competent adults to have the option of an assisted death subject to strict upfront safeguards Submission contact: n/a Key points:  Welcomes increased restriction to disqualify people with a permanent disability (who are not also terminally ill) to have an assisted death but believes it should be further restricted to those with a terminal illness and not those with life-shortening conditions Welcomes clarification that the process must be a “deliberate act” rather than euthanasia, the removal of the upper time limit of 28 days between the first and second formal request and the clarification on the extent of "Savings" (Section 24)  Believes pre-registration before first request is unnecessary  Believes the time limit between second request and drug consumption should be removed   Expresses a preference for drugs to be administered by healthcare professional known to the patient  Concerned that the requirement that the person considers their quality of life to be “unacceptable” is open to subjective interpretation  Believes eligibility should be restricted to 18+, rather than 16+  Believes that a conscience clause should be added in Doctors for Assisted Suicide About: DAS are a group of practicing and retired doctors in Scotland from multiple disciplines who support the Assisted Suicide (Scotland) Bill which is currently being considered by the Scottish Parliament Submission contact: n/a Key points: Notes that requests from teenagers where assisted suicide is available are very rare  Believe that more clarity is required about what the facilitator is and is not allowed to   Believes the Bill should include a statement that, if there is any doubt about capacity, the opinion of a consultant psychiatrist should be sought Friends At The End (FATE) About: Friends at the End is a members' democratic society, dedicated to promoting knowledge about end-of-life choices and dignified death Submission contact: n/a Page | Key points: Notes that the difference that is drawn between the terms "illness" and "condition" is confusing Making it clear that a diagnosis per se would not allow an individual to proceed to Stages and is laudable, but the use of the terms is not helpful  Notes that a liquid barbiturate is likely to be the preferred agent   Believes that it would be useful to keep and publish a statistical account of the process Amongst other items, this could include a record of the numbers of individuals obtaining a prescription and the numbers who ultimately consumed the drug Facilitators could be responsible for gathering this information Humanist Society Scotland About: Humanist Society Scotland (HSS) is part of a UK, European and wider international movement of people and organisations Submission contact: n/a Key points: Believes that terms like ‘life-shortening’, which may have arisen from disagreements amongst doctors advising those who were drafting the Bill, are confusing While the aim in the Memorandum " to capture those diagnoses which involve an on-going deterioration in the person's ability to live a normal life " is laudable, this section of the Bill should be reworded  Important to keep and publish a statistical account of the process  My Life, My Death, My Choice About: My Life, My Death, My Choice is an independent campaign supported by the Humanist Society Scotland, Friends At The End (FATE) and the Scottish Secular Society Submission contact: n/a Key points: Notes that the Bill for assisted suicide, not euthanasia  Believes that the Bill will complement existing palliative care, not undermine it  States that the Bill is improvement on predecessor  Scottish Disability Equality Forum About: Scottish Disability Equality Forum (SDEF) works for social inclusion in Scotland through the removal of barriers to equality and the promotion of independent living for people affected by disability Page | Submission contact: Key points:  SDEF, alongside their members, agree with the general principal to make the Assisted Suicide (Scotland) Bill legally allowable  Members feel that those with physical disabilities, where quality of life is affected, should also be included in the Bill  Believes the police should have a clearly defined role, however should not be directly involved with the procedure  Notes that the majority of their members feel that a mental health assessment could be undertaken, where an assessment would give the opportunity to prove capacity  Notes that in remote areas only one GP or pharmacist may be available, which may prove problematic if they are unwilling to participate  Believes that 16 years old is too young to be a facilitator and may impact the individual if involved Membership felt that the age limit for facilitators should be over 25 years old Scottish Independent Advocacy Alliance About: The Scottish Independent Advocacy Alliance (SIAA) promotes, supports and defends the principles and practice of Independent Advocacy across Scotland Submission contact: n/a Key points: Believe that anyone considering assisted suicide should be referred to independent advocacy  Believe that all professionals who may be involved in assisted suicide should have a duty to inform people about independent advocacy and the support it can provide  Scottish Unitarian Association About: The Unitarian congregations in Scotland are each affiliated to the Scottish Unitarian Association Submission contact: Rob Whiteman Key points:  Believes that any individual who faces an intolerable existence because of a debilitating and/or incurable physical condition should have the right to seek support for the termination of their life in a painless and dignified manner Page | World Federation of Right to Die Societies About: Submission contact: Rob Jonquière, MD, Communications Director Key points:  Believes the 3-step procedure is clear nut that the description of this process in the text of the Bill needs intelligent and close reading to understand fully  Would prefer to have the unbearable and hopeless suffering (through whatever reason, physically or emotionally) as the main criterion  Believes that either 18+ (adult) or no age limit (instead someone capable to assess his/her situation and make sound and well considered decisions; cf Belgium) would be preferable  Notes that a precise description of the role of medical practitioners and pharmacists is missing from the Bill  Believes that the method of suicide should be described Page | Against Alzheimer Scotland About: Alzheimer Scotland is Scotland’s leading dementia voluntary organisation It has a membership of 6000, including carers, people with dementia, professionals, professional bodies and a range of voluntary and private agencies Submission contact: Jim Pearson, Deputy Director of Policy Key points:  Oppose “at this time” because provision of high quality palliative care is inconsistent and often poor for people with dementia - people with dementia may not have a balanced view of their options  Concerned about unintended impact of proposals endorsing discrimination and adversely affecting investment in dementia care services Anscombe Bioethics Centre About: The Anscombe Centre, established in 1977, engages with the moral questions arising in clinical practice and biomedical research Its ethical position and views are based on Catholicism Submission contact: n/a Key points:  Believes that bill entrenches view that the lives of those who are terminally ill or have a lifeshortening illness can sometimes have no value, or even perhaps a negative value  Concerned that whilst current bill is for assisted suicide, not euthanasia, there is a logical progression from one to the other o Concerned become a ‘quick fix’ for disposing of the more ‘difficult’ patients  Believes that it is not helpful to others who are now, or may be in the future, suicidal themselves for society to endorse any person’s choice to die  Concerned certifying doctor may be unknown to the patient and chosen simply as one of a minority of doctors prepared to be involved in certifying requests for assisted suicide British Medical Association (BMA) About: The British Medical Association (BMA) is an independent trade union and voluntary professional association representing over 153,000 doctors and medical students working in all branches of medicine across the UK Submission contact: Dr Brian Keighley, Chairman of BMA Scotland Page | 10  Notes that it is unclear as to where the assisted suicide would take place and whether there would be a requirement for facilitators to attend patient’s own homes or whether there would be some form of licensed premises Salvation Army Scotland Office About: The Salvation Army is a worldwide Christian church and registered charity Submission contact: n/a Key points:  Concerned that it is no longer a requirement that someone seeking assistance has a consultation with a psychiatrist  Notes that a claim by the doctor that he/she acted in 'good faith' and believed that the requirements of the law were satisfied, is virtually impossible to disprove  Believes that the safeguards included in this Bill focus only on the individual who may wish to end their life, but not, for example, their family  Notes that no consideration given for palliative care  Notes that as there is no clear definition of ‘life shortening’ or ‘terminally ill’ set out in the Bill, there is ambiguity as to what is actually being legislated for and therefore who would qualify for assisted suicide  Believes that it is entirely inappropriate that assisted suicide should be offered to a sixteen year old - It is not possible that a final and definitive judgement regarding the intolerability of their life might be made by a person who has not yet achieved maturity  Notes that sections 234 and 235 of Mental Health (Care and Treatment) (Scotland) Act 2003 specifies that surgical treatment for a patient with a ‘mental disorder’ that is intended to ‘destroy brain tissue’ requires the approval of a designated medical practitioner who is not the patient’s responsible medical officer and two other persons (not being medical practitioners) appointed by the commission for the purposes of this subsection The proposed Bill does not offer the same safeguards  Notes that although complications could occur, such as muscle spasms, extreme gasping and vomiting, the presence of a doctor at the suicide is not required Page | 24 Neutral British Association for Counselling and Psychotherapy (BACP) About: BACP is the leading and largest body for counselling and psychotherapy in Scotland with over 1,700 practitioner members and over 40,000 UK-wide, making it the largest counselling body in Europe Submission contact: n/a Key points:  BACP believes that those considering assisted dying, and their family, should have access to independent, person-centred counselling, including as of the mental health assessment process, delivered through local GP surgeries by a professional adhering to a code of ethics British Psychological Society About: The British Psychological Society, incorporated by Royal Charter, is the learned and professional body for psychologists in the United Kingdom We are a registered charity with a total membership of just over 50,000 Submission contact: Dr Elaine McWilliams, CPsychol, Division of Clinical Psychology and Chair of the End of Life Care Working Party Key points:  Concerned about undue influence on the patient from others close to them or influential with them, especially in vulnerable groups Notes research which indicates that those choosing Assisted Suicide were not from vulnerable or disadvantaged groups but from higher socioeconomic groups (Ganzini & Back, 2003)  Believes that the decision process is suitable and provides appropriate safeguards   Questions availability of the expertise required in highly emotional complex cases – how is this provided and quality assured?  Notes research from Oregon that shows the introduction of Assisted Suicide appeared to improve palliative care in that state overall (Breitbart, 2003) because it raised the profile around good end of life care  States that the bill addresses some of the limitations with the previous bill, particularly suicide v euthanasia and those with severe physical disabilities and the value of their lives Page | 25  The Society has concerns that qualification criteria it may exclude some people of which the bill intended to include, including people whose mental health has suffered as a result of medication or treatment  The Society recommends that assessment of mental capacity would be better viewed as a process undergone with professionals rather than a ‘one off’ meeting where consideration of assisted suicide is taking place  Notes the definition of mental disorder used in the Bill (from section 328 of the Mental Health (Care and Treatment) (Scotland) Act 2003) does not include acquired brain injury BPS believe that the Bill should recognize that the capacity of those who have suffered such injury may be impaired and require a more complex assessment (McMillian, 1996)  Believes that safeguards need to be put in place to prevent individuals collecting medication then passing this on to someone else  Notes that as the Bill addresses ‘progressive’ illness it would be helpful to have some consideration of how to address the practicalities for those who are likely to lose cognitive functioning in the future but would wish to avail themselves of this help when they had reached a certain level of deterioration in their condition Community Pharmacy Scotland About: Represents 1234 of Scotland’s community pharmacies Submission contact: n/a Key points:  Questioned how the Scottish Government propose to pay for this service (medicine and training) - Provided by NHS or borne by participants?  Questioned how verification request by patients in rural or island communities will be validated by two doctors  Believe that pharmacists asked to dispense medication for the use in assisted suicide are clearly provided with proof that the prescriber intends the supply of medicine for that use Believes that clarification required on when the 14 day limit would begin – issuing or dispensing of prescription?  Believes that Facilitators would require training  East Dunbartonshire Social Work Group About: Body representing social work services at East Dunbartonshire Council Submission contact: n/a Key points:  Believes that as there is disagreement within the medical community over the terminology used in the Bill, the Bill must define terms such as “life shortening” Page | 26  Believes three stage declaration is appropriate, but is unclear as to whether a medical professional finding that the person in question is not suitable for assisted suicide would end the process, or whether the matter would be referred to another medical practitioner for review  Believes clarification needed for guardians exercising decision-making on behalf of others who may not have capacity  Believes local authorities would need to ensure much clearer assessments are carried out in terms of assessing capacity  Asks for clarification on “deliberate act” clause and role of facilitator  Notes that the drug must be self-administered, thus excluding the physically disabled from the scope of the Bill and undermining the spirit of the Bill East Lothian Council About: Summary of views of those employed by East Lothian Council Submission contact: David Small, Director of Health and Social Care, East Lothian Council Key points:  Concerns that there might be a move away from the therapeutic aspects of palliative care as a result of the Bill  Believes that the Bill may contradict the Scottish Social Services Council Code of practice for Social Service Workers and Employers, British Association of Social Work Code of ethics for Scotland work and ECHR  Notes that some people consulted by East Lothian Council objected to disqualification of the physically disabled  Omitting the maximum time scales at each stage is generally supported by East Lothian Council, as is the introduction of a ‘preliminary declaration’ Notes that in making the process more streamline some safeguards have been lost (i.e Facilitator no longer required to be a medical practitioner)  Believes that 16 years old is too young for a patient or to act as a ‘facilitator’  Notes that further guidance required on type of drug and process of assisted suicide   Notes that people who have provided treatment or care for the person committing suicide are disqualified from engaging in the process Would this disqualification extend to extramedical areas, for example social workers?  Believes that an assessment of capacity, completed by a multi-disciplinary team and led by a consultant skilled in this area, should be standard at each request for assistance  Believes that a counselling session and discussion should be mandatory at the point of the 1st request being made and evidence which demonstrates that the person has considered other end of life and palliative care options should be recorded  Believes that the two endorsements by medical practitioners (one by a ‘specialist medical practitioner’) should be completed within a certain time limit – days is proposed Page | 27  Believes further detail of the suicide process is needed – how, who and when the ‘means’ would be obtained, where it would be stored before the act of suicide takes place and who is responsible for ensuring that this is done safely?  Questioned whether the 1st request would be automatically cancelled if the 2nd endorsed request is cancelled in writing  Believes that the police should be informed of the intentions at the point of endorsement of the 2nd request Faculty of Advocates About: The Faculty of Advocates is the independent bar in Scotland Submission contact: n/a Key points:  Concerned about ill-defined requirement for ‘life shortening disease’ and questions whether diabetes, for example, might fall into this category  Notes that the General Medical Council and the General Pharmaceutical Council would be required to amend their regulations before their members could participate in the activities outlined in the Bill  Concerned that facilitators have an ill-defined remit and could have no medical qualifications and be as young as 16 years old  Considers that restricting assistance to patients registered with a medical practice in Scotland is a practicable ways of limiting edibility but questions whether this should be supported by a requirement that the registration should be for a minimum period prior ro the preliminary declaration  Considers that it is important that the definition of “capacity” in the Bill is consistent with both the Adults with Incapacity Act 2000 and the Mental Health (Care and Treatment) (Scotland) Act 2003 (asp 13) 1(6) (asp 4), and that conflict between statutory regimes is avoided  Notes that there may be good policy reasons for seeking to exclude from the ambit of the Bill those suffering from a mental disorder, but Faculty would be concerned such a general exclusion might be seen as discriminatory  Believes that as currently drafted, the section on savings is not clear by what standard carelessness is to be judged  Concerned as to the identification of its members as potential proxy signatories for the purposes of Section 16 of the Bill The Faculty is unclear whether involvement of its members as proxies is seen as being in the performance of a professional function or not, and would have to consider carefully with professional indemnity insurers who provide cover for advocates whether members could, or should, be permitted to perform the function envisaged  Notes that the Bill does not contain a conscience clause or sanctions or penalties for contravention of its provisions Page | 28  Notes that the Bill lacks detail about the requirements of record keeping by the various parties involved, and the inspection of those records (which would ordinarily be confidential to the patient) to prevent abuse General Pharmaceutical Council About: The General Pharmaceutical Council (GPhC) is the regulator for pharmacists, pharmacy technicians and pharmacies in Great Britain Submission contact: Lynsey Cleland, Director for Scotland, General Pharmaceutical Council Key points:  Supports the inclusion of a conscience clause Law Society of Scotland About: The Law Society of Scotland (the Society) aims to lead and support a the Scottish legal profession Submission contact: Key points:  Believes the Bill may be in direct contrast, and possibly incompatible, with Article of the European Convention on Human Rights  Believes that solicitors should not undertake a proxy function in the assisted suicide process (forces solicitors to make a judgement about capacity)  Believes that the level of permissible assistance needs to be defined and that the suicide process should be outlined in a single section for clarity  Notes that the Bill does not outline what will happen to medicine not taken by the patient, either as excess or because the patient does not go through with the process, or how said medicine is kept prior to consumption  Notes the review process in the event of disagreement between those assessing capacity is not outlined  Notes that the 16 year old age limit is compliant with Age of Legal Capacity (Scotland) Act 1991  Suggests that a standard cancellation schedule should be included and notes that the cancellation process does not enjoy the same safeguards, for example it is not witnessed, as the requests Suggests the Bill should exclude persons who are subject to compulsory treatment under the Mental Health (Care and Treatment) (Scotland) Act 2003 (the 2003 Act) or the Criminal Procedure (Scotland) Act 1995 from making a request for assistance  Believes that a blanket exclusion of the mentally ill might constitute discrimination   Believes that the 14 day period may put pressure on some to take the medicine to avoid having to re-start the process Page | 29  Notes that clarification of who would license facilitators needed  Believes the Bill should include a conscience clause and should outline standardised prescriptions for use in suicide  Believes there should be a central registry, which operates in a manner similar to the Office of Public Guardian, that may provide a more secure and centralised location for documents relating to the suicide process Lord Advocate (Frank Mulholland) About: The Lord Advocate is the chief legal officer in Scotland Submission contact: Frank Mulholland Key points:  Technical response only - outlines existing law Marie Currie About: Marie Curie is the leading charity providing care to people with any terminal illness in their own homes or in one of its nine hospices, including Edinburgh and Glasgow Submission contact: Richard Meade, Head of Policy and Public Affairs, Scotland Key points:  Strongly endorses the right of the competent patient to refuse consent to any medical treatment and commends the developing use of Advance Decisions (or their equivalent) to refuse treatment  Strongly commends the continued development and growth of end-of-life care services in hospices, hospitals and the community  Not seeking a change in the law to permit euthanasia or physician assisted suicide  Believes wider debate about end-of-life care is overlooked The J Kenyon Mason Institute for Medicine, Life Sciences and Law University of Edinburgh About: Located within Edinburgh University’s School of Law, the Mason Institute aims to investigate the interface between medicine, life sciences and the law in relation to technical, social and ethicolegal issues Submission contact(s): Cameron Kennedy, Leslie Stevens, Professor Graeme Laurie, Professor J Kenyon Mason, Nayha Sethi, Dr Shawn Harmon, Dr Gill Haddow, Dr Cate Heeney Key points: Page | 30 Held a symposium, co-hosted with Ampersand Advocates, in April 2014 on the principles, practicalities, palliative care, and policing aspects of the proposed Assisted Suicide Bill  Believes clearer definitions of ‘capacity’ and ‘assistance’ required   Important to establish robust criteria as to which illnesses or conditions qualify individuals to avail themselves of the provisions of the proposed Bill  Believes greater guidance need on how liability would be affected by a procedural error  Notes that the details of the legislation should not be added in with ancillary instruments  Concern that (a) the tight timescale involved, and (b) the requirement to return drugs if not used within a specified timeframe, might conspire to coerce individuals to commit suicide before they are ready to so  Believes that any age restrictions should be constantly reviewed, including the option for extending assisted suicide to under 16s  Believes that a conscience clause should be added in, although notes that directorial power over medical services is reserved to Westminster  Notes that a regulatory body would need to be established, which should be covered in the Bill  Believes that a three year sunset clause for legislation would be appropriate NHS Forth Valley About: A subsidiary of NHS Scotland providing healthcare services in the Clackmannanshire, Falkirk and Stirling area Submission contact: Jane Grant, Chief Executive Key points:  Predicts that many staff would have profound moral objections to the process  Notes that the Board has major concern for any possible impact on the practice and provision of palliative care and on the protection of vulnerable people  Notes that no guidance provided for healthcare professionals on standard of diligence  Notes that professional involved in the process need not need know anything about their patient’s medical history  Concerned the timescales envisaged mean it would be possible to complete the process within only 24 days, and that cooling-off periods and deadlines may compel people to act  Notes the terms “terminal or life-shortening illness”, “advanced stage”, “progressive condition” and “Life Unacceptable” are ill-defined and subjective  Believes that the role of clinical professionals called to intervene in such a circumstance (e.g unsuccessful attempts) needs to be clarified  Believes that robust reporting would be needed to provide monitoring scrutiny, audit regulation and research Page | 31 North Ayrshire Council About: Summary of view from employees of North Ayrshire Council Submission contact: n/a Key points:  Concerned requirement for registration with a Scottish doctor, rather than residency, may encourage suicide tourism  Concerned that the requirement for psychiatric assessment to establish capacity has been reduced and recommends that an assessment of capacity is routinely carried out by a s22 (Mental Health (Care and Treatment) (Scotland) Act 2003) approved medical practitioner  Notes that the original Bill was more prescriptive in relation to the location in which the act of suicide should take place and that the relaxation of this criteria is an improvement  Believes the substitution of practitioners for facilitators could open process up to abuse  Notes that a definition of ‘good faith’ and other terms is missing  Notes clarification on death certificate and who would regulate process needed Parkinson’s UK About: For more than 40 years Parkinson’s UK has been working to find a cure and improve life for everyone affected by Parkinson's Submission contact: n/a Key points:  Believes that the 14 day timeframe may put undue pressure on the requesting person to act to end their life  Concerns that the new criteria of “terminal”, “life shortening”, “progressive”, “illness” and “condition” are subjective and open to interpretation by individual practitioners  Agrees with the Bill’s specification that communication difficulties should not be considered to indicate a lack of capacity, where human or mechanical aids can be used to overcome difficulties - would like to see a duty to involve a speech therapist where people have significant communication difficulties  Legislation should specify that assessment of capacity should be made by a clinical neuropsychologist, in line with recommendations made in guidance accompanying the Adults with Incapacity (Scotland) Act Police Scotland About: Scotland’s police service Submission contact: Iain Livingstone, Deputy Chief Constable Page | 32 Key points:  Police Scotland not believe provisions for recording, monitoring and accountability not fully addressed in the current draft  Believe further detail is required on method of suicide  Believes that consideration needs to be given to Life Insurance and insurance companies The Royal College of Physicians of Edinburgh About: The RCPE is an independent standard-setting body and professional membership organisation Our aim is to improve and maintain the quality of patient care Submission contact: n/a Key points:  Believes that the Bill must include a conscience clause  Concerned legislation may be subject to legal challenge by severely disabled people who are unable to commit suicide, even with assistance  Concerned legalisation may encourage others who would be eligible to contemplate suicide  Believes that assessment of capacity and training in psychiatric conditions would be required for any doctors signing first and second statements  Questioned whether there would be any linkage between expressed wishes at stage and a DNACPR decision if admitted to hospital  Concerned that qualification based on patient defined intolerance could lead to confrontation between doctors and patients or their family – currently no review process outlined  Generally uneasy about the prospect of 16 year old facilitators and concerned they may be unduly influenced by older facilitators  Notes that is unclear whether the patient will retain an endorsed copy of the preliminary declaration when approaching a doctor for a first statement and whether that doctor must then check with his/her GP records Notes that it is also unclear whether the doctor asked for the second statement needs sight of the original copy of the first statement before signing the second statement and thus enabling the patient to access a licensed facilitator  Believes greater clarity needed on the method of suicide   Questioned whether the training of facilitators would equip them to react to an unsuccessful attempt  Questioned what the expectations of the facilitator would be if a person changed their mind part way through the process of suicide  States that it is unclear to whom the trained facilitator must return unused medication after 14 days and any sanctions that may be applied for non-compliance  Notes that there must be effective quality assurance arrangements for the licensing body for facilitators Page | 33 The Royal College of Psychiatrists in Scotland About: With around 1195 Members, Fellows, Affiliates and Pre-Membership Trainees, the Royal College of Psychiatrists in Scotland is the professional medical body responsible for supporting psychiatrists throughout their careers, from training through to retirement, and in setting and raising standards of psychiatry in Scotland Submission contact: n/a Key points:  Notes that psychiatrists would not expect to be routinely asked to be involved in determining whether people are able to make the decision about assisted suicides Although does recognise that in complex cases psychiatrists may be asked for a judgement on someone’s capacity and decision making in relation to ending their life Royal Pharmaceutical Society About: The RPS is the professional body for individual pharmacists across Great Britain Submission contact: Professor John Cromarty, Chair, Scottish Pharmacy Board Key points:  Believes that a national multidisciplinary professional advisory panel, to include pharmacists, should be provided for in statute to develop national protocols if the legislation is passed  Notes that the process outlined in the Bill loosely follows their own policy position and they support a prior registration in principle Would prefer an “opt in” for pharmacists rather than an “opt out” using the conscience clause  Notes that the role of pharmacists is not clearly outlined in the Bill  Believes that Pharmacists will require access to all the relevant patient records to be assured of the clinical appropriateness of the request, and to be included in the planning process to ensure safe and timely dispensing of any prescriptions and as well as assurance that all legal requirements have been fulfilled  Believes greater clarity is required about the process regarding the death certificate   Notes that doctors and nurses involved in treatment are mentioned as being precluded from being facilitators, witnesses or proxies Believes that this is too prescriptive and should be extended to other health professionals who have had a professional relationship with the person concerned Scottish Association for Mental Health About: the Scottish Association for Mental Health (SAMH) is Scotland's leading mental health charity Submission contact: Carolyn Roberts, Head of Policy and Campaigns Page | 34 Key points: Believes a definition of ‘life-shortening’ is required and notes that people suffering from mental health problems typically live shorter lives  Believes that the method of suicide needs to be clarified   Disappointed to see that the Bill does not make provision for people to be offered psychological support at any stage Scottish Ambulance Service About: Scotland’s ambulance service Submission contact: n/a Key points:  Believes that legislation would have no operational impact on the ambulance service  Would like to be consulted should the legislation be progressed Scottish Council of Jewish Communities About: The Scottish Council of Jewish Communities (SCoJeC) is the representative body of all the Jewish communities in Scotland and its aims are to advance public understanding about the Jewish religion, culture and community Submission contact: n/a Key points:  Notes that Jewish religious law is unequivocally opposed to both euthanasia and suicide  Believes that adequate pain relief, supplied with the sole intention of relieving pain and distress, is permitted by Jewish religious law, even if there is the possibility that the patient's life may be shortened in consequence  Notes that many members of the Liberal and Reform Jewish communities would welcome a change in Scottish law to legalise assisted suicide  States that the current Bill does not, in the view of the Council, provide improved security for individuals suffering from terminal or life-limiting illnesses or conditions  Does not believe that the proposed procedure can be relied on to ensure that an individual does not feel under pressure to request an assisted suicide, for example that they would be a financial burden to their family or to the NHS  Concerned that the Bill only requires the involvement of two medical practitioners, neither of whom is required to have known or provided care to the individual for any significant length of time  Notes that the time limit between the second request and its implementation might put additional pressure on an individual to proceed with an assisted suicide before the 14 days are up Page | 35  Concerned 16 year olds may be susceptible to pressure or undue influence and believe people of this age should not be facilitators  Concerned process may facilitate suicide tourism  Believes that a conscience clause should be included Scottish Justices Association About: The Scottish Justices Association was formed in May 2007 and has over 400 members who are Justices of the Peace In Scotland Submission contact: n/a Key points:  Notes that many Justices may have objections, so important to ensure that they would not be obliged to act in this capacity (conscience clause)  Notes that there is no objection to the principle of Justices acting as proxy signatories However, states that the role required by s16 is very different from that of simply witnessing signatures under oath, administering statutory declarations, certifying copies, and similar essentially notarial functions  Concerned that nothing in the Bill indicates how a Justice of the Peace (or other proxy), might safely conclude that the prospective suicide is fully mentally capable of understanding the effects of the declaration - the person seeking assistance is very likely to be unknown to the Justice  SJA considers that the Bill should require that the medical statement of capacity to understand, should be produced prior to the declaration being signed and the medical evidence should be shown to the proxy so as to satisfy him- or herself that the prospective suicide understands the effect of a signature, thus avoiding any liability whether criminal or civil Scottish Partnership for Palliative Care About: SPPC is the umbrella body representing the major organisations involved in palliative care in Scotland Submission contact: n/a Key points:  Believes the Bill should provide guidance to healthcare professionals on the standards of diligence required when assessing eligibility Notes that the Bill does not require the assessing practitioner to have any prior knowledge of the requesting person or their social and family circumstance or any particular skills/expertise/knowledge beyond those universally required of all medical practitioners  Notes that total process could be completed in only 24 days and considers this too short  Page | 36  Believes cooling off periods, deadlines and revocation arrangements may pressure some into acting prematurely  Notes that the Bill does not articulate (phrasing of 9(2)(c)) a requirement that alternatives to assisted suicide are adequately explored  Notes that the Bill should be clear whether patients requesting assistance have a right of appeal should they be deemed ineligible  Believes that the terms “terminal or life-shortening illness” and “progressive condition” are insufficiently precise to form part of clear eligibility criteria  Notes that Bill is not clear as to who will prescribe/dispense any lethal medication or about the role of non-medical prescribers Stirling Council About: Summary of opinions of those working for Stirling Council Submission contact: n/a Key points:  Concerned assistance with suicide would potentially be open to people who have recently received a diagnosis or prognosis and considers that people who are upset, in shock and have not yet been given and allowed to digest information around their condition are not in the best position to make a decision – request for assisted suicide may be a "knee jerk reaction"  Believes the Bill should be amended to require provision of information around care and treatment  Believes that a two week "cooling off" period is too short and suggested that the process is prolonged to allow for assessment and provision of information  Suggest that for people who are not immediately at end of life there should be a longer "cooling off" period  Believes an assessment of the social circumstances and life history of someone requesting assistance would contextualise their decision and help to protect the person from undue influence  Believes 16 years old is too young to decide to die and that the age restriction should be increased to at least 18 years old, possibly 25 years old  Suggests the Bill make clear and unambiguous links to adult support and protection legislation to avoid legislative confusion or conflict  Believes that a conscience clause is required Together (Scottish Alliance for Children’s Rights) About: Together (Scottish Alliance for Children’s Rights) is an alliance of children's charities that works to improve the awareness, understanding and implementation of the UN Convention on the Rights of the Child (UNCRC) in Scotland Together (Scottish Alliance for Children’s Rights) is an Page | 37 alliance of children's charities that works to improve the awareness, understanding and implementation of the UN Convention on the Rights of the Child (UNCRC) in Scotland Submission contact: n/a Key points:  Believes that for children of all ages who have the capacity to express an informed view on her or his treatment and health care, their view must be respected and given due weight in decisions regarding how they ought to be treated Together for Short Lives About: Together for Short Lives is the leading UK charity for all children and young people with lifethreatening and life-limiting conditions and all those who support, love and care for them Submission contact: n/a Key points:  Believes the proposed Bill still does not provide adequate safeguards for young people  States that, for neurodevelopmental reasons, young people up to the age of about 25 not yet fully associate their own death with permanent erasure from existence  Notes terms such as ‘life shortening’ and ‘prospect of improvement’ are not defined in the Bill  Notes that capacity is not always the same as autonomy - Compared with older adults, young people are relatively disempowered as they lack influence in society, are often poor or financially dependent on others, and are isolated  Suggest that if this Bill were to become law, there should be a graduated test for capacity that reflects the graduated developmental understanding of death over early adulthood  Notes that it is not clear what authority the Bill gives to parents of young people who lack capacity Believes that if this Bill were enacted, it would be important to ensure that all practitioners involved in facilitating suicide among young people had appropriate competences in young people specifically  Notes that there is no suicide method outlined   Notes there is no explicit legal protection for practitioners who would find themselves morally unable to provide support for suicide  Believes the risk of abuse of assisted suicide legislation could be reduced by a much clearer emphasis on the need for all those with a life-limiting condition to have access to first rate palliative care appropriate to their age Page | 38