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Sponsor’s Report on the End of Life Choice Bill

David Seymour

MP for Epsom and Leader of the ACT Party

12 December 2018

Sponsor’s Report on the End of Life Choice Bill David Seymour MP for Epsom and Leader

1.0 EXECUTIVE SUMMARY

In this Sponsor’s Report I make a series of recommendations for how the Bill might be improved. I have taken this step because I have been intimately involved in the debate around this topic in general and my Bill in particular for over three years now and believe I can add a useful perspective.

The Report sets out minor and substantive issues raised by submitters and members of the public during the Select Committee process and in consultation, analyses extensive overseas evidence from jurisdictions with assisted dying laws and proposes a range of technical and substantive amendments to the Bill.

In summary, my findings are that there is high public support for legislative change in New Zealand, there is no risk of coercion of the vulnerable, and that the provision of palliative care is complementary to the provision of assisted dying.

However, due to concerns on these matters, my suggestion is that the Committee should amend the Bill to provide for:

a binding referendum on the commencement of the Bill at the General Election

amending the eligibility criteria to limit eligibility to terminal illness

for avoidance of doubt, stating that access to assisted dying for people cannot be by reason of mental health conditions and disabilities only

incorporating the Access to Palliative Care Bill sponsored by Maggie Barry MP.

The report also suggests amendments to clarify the role and protection of pharmacists, nurses, and medical practitioners, the purpose of the SCENZ Group, the register, and the issues of advanced directives, insurance, and suggests providing for the issuing of delay certificates for a person who is eligible for assisted dying but wishes to change the timing of administration.

TABLE OF CONTENTS

1.0

EXECUTIVE SUMMARY

2

2.0

INTRODUCTION

5

3.0

OVERARCHING CONCERNS

7

3.1

PUBLIC SUPPORT

7

3.2

SUICIDE CONTAGION

8

3.3

TRUST

9

3.4

SLIPPERY SLOPE AND INVOLUNTARY EUTHANASIA

10

3.5

COSTS OF HEALTH CARE

11

3.6

DEATH CERTIFICATES

12

3.7

CONSCIENTIOUS OBJECTION OF MEDICAL PRACTITIONERS

13

3.8

CONSCIENTIOUS OBJECTION OF ORGANISATIONS

14

4.0

PROCESS AND ADMINISTRATIVE CONCERNS

16

4.1

COMMUNICATING WITH THE PATIENT AT INTERVALS VS MANDATORY COOLING-OFF

16

PERIODS

4.2 UN CONVENTION ON RIGHTS OF PERSONS WITH DISABILITIES

17

4.3 REFUSAL OF TREATMENT IN TERMINAL CONDITIONS

17

4.4 DEFINITION OF MEDICATION

18

4.5 PSYCHOLOGIST AND PSYCHIATRIST SUPPORT

19

4.6 RISK OF THE MEDICATION

19

4.7 TRAINING, STANDARDS, AND CODES FOR MEDICAL PRACTITIONERS

20

4.8 ADVERSE REACTIONS

21

4.9 CONFIDENTIALITY AND PRIVACY OF MEDICAL PRACTITIONERS

22

4.10 LOCATION OF ASSISTED DYING

22

4.11 INDEPENDENCE OF MEDICAL PRACTITIONERS

23

4.12 ACCESSIBLE INFORMATION ON ASSISTED DYING

23

4.13 THE PURPOSE OF THE REVIEW COMMITTEE

24

4.14 SPECIALIST PRACTITIONER ADVICE

24

5.0

AMENDMENTS TO ELIGIBILITY CRITERIA AND TIMING

26

5.1

GRIEVOUS AND IRREMEDIABLE MEDICAL CONDITION

26

5.2

PROGNOSIS OF 6 MONTHS

27

5.3

DELAYING THE ASSISTED DYING PROCEDURE

29

6.0

AMENDMENTS TO CLARIFY PROTECTIONS

31

6.1

MENTAL HEALTH CONDITIONS

31

6.2

VULNERABLE PERSONS

32

6.3

ENDURING POWERS OF ATTORNEY AND ADVANCED CARE PLANS

34

6.4

COERCION AS GROUNDS FOR REFUSAL

35

6.5

COMPETENCE, COGNITIVE FUNCTION TESTS, AND INTELLECTUAL DISABILITIES

36

6.6

PALLIATIVE CARE

39

6.7

AGE LIMIT

39

6.8

7.0

TALKING WITH THE FAMILY

PROCESS AND ADMINISTRATIVE AMENDMENTS

40

42

7.1 DEFINITION OF ASSISTED DYING AND ADMINISTRATION OF MEDICATION

42

7.2 DEFINITION OF MENTAL DISABILITY

42

7.3 CONSCIENTIOUS OBJECTION AND PROTECTION OF HEALTH PRACTITIONERS AND PHARMACISTS 43

7.4 PROFESSIONAL OBJECTION AND EXPERIENCE

44

7.5 TIMING OF CONSCIENTIOUS OBJECTION

45

7.6 ROLE OF NURSES AND SUGGESTION OF ASSISTED DYING

46

7.7 NURSE PRACTITIONERS

48

7.8 IMMUNITY OF MEDICAL PRACTITIONERS, HEALTH PRACTITIONERS, AND PHARMACISTS

48

7.9 TIKANGA AND TE AO M ĀORI

52

7.10 SCENZ GROUP AND REVIEW COMMITTEE MEMBERSHIP

53

7.11 INSURANCE

54

7.12 THE PURPOSE OF THE REGISTER

55

7.13 CREMATION FORMS

56

8.0

OTHER AMENDMENTS

58

8.1

ACCESS TO PALLIATIVE CARE

58

8.2

REFERENDUM

59

9.0

CLAUSE BY CLAUSE ANALYSIS

61

10.0 SUBMISSIONS CONSIDERED

69

2.0 INTRODUCTION

The clear international trend since the 1990s has been for Parliaments to recognise that, in certain well-defined circumstances, an individual’s choice about the end of their life is entitled to respect. In 1997, Oregon became the first jurisdiction in the world to legalise assisted dying. Now over 120 million people live in a country or jurisdiction with assisted dying laws, including Belgium, the Netherlands, Luxembourg, Switzerland, Canada, the US states of Oregon, Washington, Montana, Vermont, California, District of Colombia, Colorado, and Hawaii and, closer to home, the Australian state of Victoria. While opponents point out that many jurisdictions have rejected assisted dying laws, it is also true that no jurisdiction with experience of these laws has gone back.

Our Parliament had debated assisted dying twice before the End of Life Choice Bill was introduced to Parliament in 2017. Both Bills failed to gain Parliamentary support, but the direction of travel was made clear. The first time was in 1995, when Michael Laws’ Death with Dignity Bill was defeated 61/29 at first reading. The second time was in 2003, when Peter Brown’s Death with Dignity Bill was defeated 60/58 at first reading. However, national support for legislative change continues to grow and the End of Life Choice Bill passed its first reading 76/44 on 13 December 2017.

Evidence and developments have established that there are serious problems with the current state of the law in New Zealand that will be ongoing without legislative change. The 2015 High Court case of Seales v. Attorney-General demonstrated that some people are ending their lives earlier than if assisted dying were legally available to them, and that palliative care cannot alleviate all suffering in all cases. Additionally, further evidence from overseas demonstrates that it is possible to create assisted dying laws with properly designed and administered safeguards capable of protecting vulnerable people from abuse and error and that there is no evidence of a slippery slope occurring in any jurisdiction with assisted dying laws. Common eligibility criteria and safeguards have developed across comparable jurisdictions, specifically Australia, Canada and states of the United States. The End of Life Choice Bill reflects the stringent standard established in these regimes.

I put forward the End of Life Choice Bill because in my view it is democratically, morally, and legally and the right thing to do. New Zealanders frequently express overwhelming support for legalisation in scientific polls of public opinion.

I believe that they are reflecting their real-life experiences. They are acknowledging the cruel

choice many New Zealanders face of violent, amateur suicide or suffering to the bitter end. For this reason, I believe it is morally right for adults who are competent, informed, and terminally ill to have the option of assisted dying to relieve suffering.

Finally, the Courts, in Seales v. Attorney General, have said only Parliament can make change on this subject. The End of Life Choice Bill will give choice and allow people to end their lives in peace and dignity, surrounded by loved ones.

The Bill is now before the Justice Select Committee who have received over 35,000 submissions and heard from thousands of submitters across New Zealand who wished to be heard orally. The eight members of the Justice Select Committee must now consider the

evidence that has been presented to them and report back to Parliament on 27 March 2019 with their findings and recommendations.

The number of submissions received on the End of Life Choice Bill is the largest in recent Parliamentary history and as the Bill’s sponsor I have supported two extensions to allow the Committee to consider the evidence. A further extension has meant that the Bill will have been considered for 15 months, I understand this is a record for our parliament. I have read submissions from all national organisations who submitted on the Bill and listened to public submissions where possible.

Over the last 12 months I have also heard from and spoken with thousands of members of the public at 27 End of Life Choice Bill public meetings from Kerikeri to Gore and everywhere in between, and have consulted with representatives of the disability community, and pharmacy, medical, and nursing organisations.

This report is a culmination of extensive research of the overseas evidence that examines the Bill against recommendations and suggested changes raised in the submission process. It outlines my proposals to the Justice Select Committee and seeks to put forward the best possible version of the End of Life Choice Bill that will receive support from the greatest number of members of parliament to ensure a safe passage through second reading.

3.0

OVERARCHING CONCERNS

3.1 PUBLIC SUPPORT

A

number of submitters have claimed that the public do not support legalising assisted dying

in

New Zealand, given that the Health Select Committee 2017 found that close to 80 per cent

of

submitters were opposed to a change in legislation that would allow for assisted dying. Other

submitters interpreted the polls to be favourable towards assisted dying but claim that the

questions asked of respondents are vague or misleading and therefore not to be trusted.

It is important that members of the public are able to express their views on issues before

Parliament, however, public submissions are not the best way to gauge support for or

opposition to these issues. During the debate on civil unions 13 per cent of submissions were

in favour while 83 per cent were in opposition, however, a Herald Digipoll of 750 people at

the time showed New Zealanders supported civil unions 56 per cent to 39 per cent. 1

Similarly, close to 80 per cent of submissions on Maryan Street’s petition for the House of Representatives to investigate the public attitudes towards legislating for medically assisted dying were opposed to the idea, yet the Health Select Committee Report found that “several recent polls of New Zealanders have shown high levels of support for euthanasia.” 2

The report listed a 2015 Curia Market Research poll which asked “What is your view on whether voluntary euthanasia should be legal – strongly oppose, somewhat oppose, somewhat favour, strongly favour?” The poll found 66 per cent of respondents supported legalising euthanasia, 20 per cent were opposed, 10 per cent were neutral and 2 per cent were unsure. A Reid Research poll which asked, “Should law be changed to allow ‘assisted dying’ or euthanasia?” was also mentioned and it found 71 per cent of respondents said yes, 24 per cent said no, and 5 per cent were undecided. 3 Similarly, a July 2015 Colmar Brunton poll asked, “Should a patient be able to request a doctor’s assistance to end their life?” 75 per cent of respondents said yes, 21 per cent said no, and 5 per cent were unsure. 4

These polls are consistent with historical polls. For the last 20 years surveys and polls have been conducted across New Zealand asking whether doctors should be allowed to assist a patient to die, at that patient’s request, where their condition is terminal or incurable and/or they are in pain. Researchers from Otago University reviewed this existing research containing the views of 36,304 people and concluded that across all surveys, on average, 68.3 per cent of New Zealanders support euthanasia, 14.9 per cent are opposed to legislation, and 15.7 per cent are neutral or unsure. 5 Lead author Research Fellow Jessica Young said, “It seems that a majority of the public are open to the possibility of legislative change.” 6

1 “Civil Union Bill: What the readers say”, The New Zealand Herald, (online ed, Auckland, 4 October 2004).

2 Health Select Committee, Report on the Petition 2014/18 of Hon Maryan Street and 8,974 others, August 2017, at 15.

3 Ibid.

4 Ibid.

5 Young J., Egan R., Walker S., Graham-DeMello A. & Jackson C. “The euthanasia debate: synthesising the evidence on New Zealander’s attitudes, Kōtuitui” (2018) New Zealand Journal of Social Sciences Online at 4

6 Jessica Young “Most Kiwis support some form of euthanasia or assisted dying, Otago review reveals,” (1 November 2018) Otago University <www.otago.ac.nz>

3.2 SUICIDE CONTAGION

According to a number of submissions, legalising any form of euthanasia or assisted suicide would be a threat to public health and lead to a contagion effect where the suicide of one person would influence the suicide of another and increase suicide rates in a country where suicide rates are already high. It has been suggested that legalising assisted dying would also send a signal to young people with depression that suicide is okay.

The Select Committee Inquiry into the Petition of Hon Maryan Street and others chaired by Simon O’Connor MP sought advice regarding whether suicide rates are higher in jurisdictions where assisted dying is legal. The Select Committee report stated the following: “The Ministry of Health told us that there does not appear [to] be any connection between assisted dying or euthanasia and rates of suicide. We heard that because causes of suicide are complex, increases in suicide rates are unlikely to be caused by one single factor, so certainty in this area is very difficult.” 7

The evidence, therefore, does not support the submitter’s concerns about a contagion effect. Suicide causes are multifactorial.

However, according to other evidence there is a very real possibility that legalising assisted dying would decrease the number of people with terminal illnesses ending their lives through suicide. The prohibition of lawful assisted dying in New Zealand has meant many New Zealanders commit suicide out of the fear of knowing their condition will deteriorate and may become unbearably painful and choose to end their lives early while they are still physically able to do so.

The High Court Judgement of Collins J in Seales v Attorney General drew upon evidence provided by Dr Weaver and Dr Munro who conducted research into suicides in New Zealand between 1900 and 2000. The research suggests between 3 to 8 per cent of suicides in the last century were committed by people who were rational, competent, and suffering a terminal illness. Collins J also heard from a range of clinical experts who provided evidence that people may attempt to take their lives before they lose the ability to do so rather than waiting for further debilitation. 8

The Australian data corroborates this finding. The Coroners Court of Victoria’s submission to the Victorian Parliament Legal and Social Issues Committee Inquiry into End of Life Choices said 8.6 per cent of suicides in Victoria are committed by people with terminal illnesses, chronic incurable diseases and pain that cannot be relieved. 9

Drawing upon coronial records in Western Australia the Joint Select Committee on End of Life Choices this year also estimated that “Approximately 10 per cent of suicides in Western Australia in any given year are carried out by individuals suffering from a terminal or debilitating chronic illness.” 10

7 Report on the Petition 2014/18 of Hon Maryan Street and 8,974 others at 44. 8 Attorney-General v Lecretia Seales [2015] NZHC 1239 at [51-53] 9 Coroners Court of Victoria, “Submission to the Legal and Social Issues Committee Inquiry into End of Life Choices” at 4. 10 Joint Select Committee on End of Life Choices, Parliament of Western Australia, Report 1 My Life, My Choice, August 2018, at 144.

Given extensive evidence of premature death in these circumstances, the Court in Carter held that the prohibition on assisted dying was a breach of the right to life. Collins J in Seales v Attorney General also held that Lecretia's right to life was engaged because she was at risk of premature death under the current law. 11

During End of Life Choice Public Meetings around the country many New Zealanders have recounted harrowing stories of being the first on the scene to a suicide prompted by terminal illness or degenerative disease, and others have openly admitting that they will commit suicide because of their fear of the progression of their illness and subsequent limited options.

Legalising assisted dying would give hope and comfort to people with terminal illnesses knowing that there are options to suffering at the end of life. There is no evidence to suggest rational acts of assisted dying would lead to a contagion of irrational suicides.

The Report of the Joint Select Committee on End of Life Choices in Western Australia found “It is possible to distinguish temporary suicidal ideation from an enduring, considered and rational decision to end one’s life in the face of unbearable suffering. Given this distinction, there is no inconsistency in ongoing suicide prevention campaigns and a decision to legislate for the introduction of a targeted assisted dying framework.” 12

Therefore, it is clear that there is a difference between a young person suffering with depression who faces years of life but irrationally wants to end their life early and a person suffering at the end of life facing a potentially horrific and painful death.

Indeed, there is some anecdotal evidence that a culture of openness surrounding death may help reduce irrational suicide. Legalising assisted dying would not send a message to young people that suicide is ok, instead, allowing New Zealanders to talk openly about death may make it easier for medical practitioners and family to spot depression in a young person who asks for assisted dying but is otherwise healthy, and to offer them support.

3.3 TRUST

Submitters raised concern that this Bill would result in a significant negative shift in an individual’s trust in the support of professional, social and family networks, especially the doctor-patient relationship.

Although this issue has not been studied or polled in New Zealand, the debate is simply too important for us to ignore empirical data from overseas.

A 2015 poll of 5018 people in the United Kingdom by research company Populus outlined an assisted dying model and asked if this proposal becoming law would increase or decrease the person’s trust in doctors. 13 per cent said it would significantly increase trust in doctors, 25 per cent said it would somewhat increase trust in doctors, 50 per cent said it would make no difference, 8 per cent said it would somewhat reduce trust in doctors, and 4 per cent said it

11 Attorney-General v Lecretia Seales [2015] NZHC 1239 at [166]

12 Report 1 My Life, My Choice, at 179

would significantly reduce trust in doctors. 13 At least three times as many respondents believed that trust would be increased in the doctor-patient relationship than decreased.

The Select Committee inquiry into the Petition of Hon Maryan Street and others sought advice from the Ministry of Health about the effect assisted dying would have on public confidence

in doctors. The subsequent report into the inquiry stated,

“The International Social Survey Programme collected data between 2011 and 2013. It found that public trust in doctors was the highest in Switzerland […] In the Netherlands, the figure was 78 percent, while in Belgium it was 74 percent. In the United Kingdom and France, where assisted dying is not permitted, the figures were 76 percent and 75 percent respectively. 14

Switzerland is widely known to have the most liberal assisted dying laws in the world and yet the highest public trust in doctors. The trial judge in Carter v Canada also concluded that “any changes in the physician-patient relationship following legalization “could prove to be neutral or for the good.” 15 The evidence therefore suggests that submitters’ fears are not realised. Countries which have assisted dying legislation have similar or higher public trust in doctors than countries that are yet to legalise.

Evidence also provided in Seales v Attorney-General demonstrated that, in Oregon, assisted dying had had a positive rather than negative impact on physician- patient relationships and had also increased the uptake of palliative care. 16

3.4 SLIPPERY SLOPE AND INVOLUNTARY EUTHANASIA

A number of submitters believe the Bill, when passed, will be extended to include other forms

of treatable illness, depression, loneliness, the handicapped or babies born with severe deformities, and ultimately involuntary assisted dying. Some submitters believed enacting assisted dying would increase the risk of involuntary euthanasia of people with cognitive impairment, dementia, or reduced capacity.

These fears about the future liberalisation of eligibility criteria are based on genuine concern from New Zealanders. However, I believe that these fears are misguided and that New Zealand’s legislative process, in line with safeguards in the Bill, prevent them from being realised.

13 “Dignity in Dying Poll, Online Fieldwork: 11 th -19 th March 2015.” (2015) Populus <www.populus.co.uk>

14 Report on the Petition 2014/18 of Hon Maryan Street and 8,974 others, at 35.

15 Carter v Canada (Attorney General), 2015 SCC 5, [2015] at [26] 16 In Seales v AG, doctors practising in Oregon, New Mexico and Montana gave evidence that the availability of assisted dying had not reduced their focus on treating the patient's suffering and the quality of their relationship with terminally ill patients. See also the Quebec Select Committee on Dying with Dignity, Dying with Dignity Report (March 2012) at [68] which concluded that "in countries where it is permitted, euthanasia has helped move the medical culture and the decision-making process towards a more balanced doctor- patient relationship".

The Joint Select Committee on End of Life Choices in Western Australia addressed this in their report on assisted dying:

"The published evidence does not support claims that legalisation of assisted dying results in an inevitable move toward the erosion of safeguards and an increase of non-voluntary euthanasia. Indeed, the evidence supports the opposite conclusion – introducing a legal framework for assisted dying reduced the incidence of unlawful activity, including non- voluntary euthanasia." 17

At many public meetings across the country and during the Select Committee process, the Netherlands and Belgium have been referred to as examples of jurisdictions where assisted dying laws have liberalised beyond their original scope, however, evidence has also been presented which counters those claims. The Joint Select Committee on End of Life Choices in Western Australia cautioned against using the example of European jurisdictions in an attempt to cast doubt on legislative change. They pointed out that the Oregon experience, where the law has not changed or expanded since it was introduced in 1997, “demonstrates the invalidity of any attempt to apply a universal slippery slope argument.” 18

It is also worth noting significant differences between laws in English speaking and continental jurisdictions. The wording of the Dutch legislation does not state that a person must be terminal or in an advanced state of decline, only that they must be “suffering hopelessly and unbearably.” This suffering encompasses physical and psychological issues and therefore is able to be interpreted much more broadly than eligibility criteria in the End of Life Choice Bill. The final report of Victoria’s Legal and Social Issues Committee Inquiry into End of Life Choices backs up this evidence by stating quite simply that “the slippery slope has not eventuated in permissive jurisdictions. 19

The trial judge in Carter v Canada came to the same conclusion after reviewing international evidence. In the ruling it is noted that she “rejected the argument that adoption of a regulatory regime would initiate a descent down a slippery slope into homicide.” 20

3.5 COSTS OF HEALTH CARE

Submitters raised that the cost of health care is expensive and that this Bill could become a cost-effective way to treat the terminally ill or a way to reduce funds for aged care in times of budget constraints. It was mentioned that in Canada it has been estimated that euthanasia and assisted suicide will reduce annual health care spending by between $32.7 million and $138.8 million. These figures are considered the “elephant in the room” and “the cold, fiscal reality,” of introducing an assisted dying regime in New Zealand. No evidence exists that the legalisation of assisted dying would reduce health care expenditure to any significant level and suggestions otherwise are based on the false assumption that the majority of health care expenditure is spent on people in their last weeks of life.

17 Report 1 My Life, My Choice, page 174.

18 Report 1 My Life, My Choice, page 173.

19 Parliament of Victoria Legal and Social Issues Committee, Final Report: Inquiry into end of life choices, June 2016, at 312.

20 Carter v Canada at [120]

Ezekiel J. Emaneul and Margaret P. Battin, a bioethicist and medical ethicist respectively, analysed the potential cost savings of assisted dying in the United Stated health care system and estimated that legalisation would save the country approximately $627 million. At first that seems like a large figure, however, their study goes on to state that “This amount is less than 0.07 percent of total U.S. health care expenditures,” and also states that this may be a “considerable overestimate of savings.” 21

Emanuel also investigated the likely impact of assisted dying on health expenditure in Canada and was referenced in a later study. This study included the figures mentioned by the submitter but found that “even if the potential savings are overestimated and costs underestimated, the implementation of medical assistance in dying will likely remain at least cost neutral. 22 The savings of between $32.7 and $138.8 million is only approximately 0.05 percent of the total 2017 Canadian health care budget of $242 billion.

3.6 DEATH CERTIFICATES

Submitters raised concern that Section 28 with respect to amendments to the Births, Deaths, Marriages, and Relationships Registration (Prescribed Information) Regulations 1995 asked physicians to be dishonest when completing a death certificate by not allowing the physician to reference “assisted dying.”

It was also suggested that this clause would work against the correct collection of statistics making it difficult to monitor trends in end of life care. These claims are untrue and appear to ignore key details in the Bill.

Section 28 (2) amends the Births, Deaths, Marriages, and Relationships Registration (Prescribed Information) Regulations 1995 by replacing subclause 7(1)(a)(xiii), “the cause or causes of the person’s death, and (if more than 1, in respect of each) the interval between onset and death” with five new subclauses. One of these subclauses (xiiib) states very clearly that “in respect of a person who dies as a result of the provision of assisted dying under the End of Life Choice Act 2017, the fact that the person died as a result of the provision of assisted dying under the End of Life Choice Act 2017,” must be written on the death certificate.

Section 28 (2) requires that two sets of information be recorded on the death certificate; the fact the person died as a result of assisted dying, as mentioned above, and the underlying medical condition which made them eligible for assisted dying.

This amendment to the Births, Deaths, Marriages, and Relationships Registration (Prescribed Information) Regulations 1995 ensures there is complete clarity as to the circumstances surrounding death and therefore do not work against the correct collections of statistics.

21 Emanuel E.J., and Battin M.P. “What Are the Potential Cost Savings from Legalizing Physician-Assisted Suicide?” (1998) The New England Journal of Medicine, at 168.

22 Trachtenberg A.J., and Manns B. “Cost analysis of medical assistance in dying in Canada” 2017, Canadian Medical Association Journal, 183(3): E101.

3.7 CONSCIENTIOUS OBJECTION OF MEDICAL PRACTITIONERS

Although a medical practitioner may refuse a request for assisted dying on the grounds of conscientious objection, the medical practitioner is required under Section 7 (2)(b) to tell the person that “the person may ask the SCENZ Group for the name and contact details of a replacement medical practitioner.” There is concern that this provision overrides the professional autonomy of the practitioner and forces them to collude in the process.

One submitter stated the following: “By instructing the medical practitioner to tell the person that they may seek details for another practitioner, they are being forced to facilitate physician assisted suicide by referral.” Submitters suggested a possible alternative could be for a medical practitioner to simply note the SCENZ details on his or her medical practice website or to have pamphlets available in the waiting room leaving it up to the patient to self-refer to SCENZ.

It is misleading to suggest that the Bill is forcing medical practitioners to facilitate assisted dying. The Bill only requires the medical practitioner to tell the person that they may ask the SCENZ Group for the name and contact details of a replacement medical practitioner. This does not force the medical practitioner to contact another medical practitioner or clinic, or talk to the SCENZ Group, or assist in examining the person, or even guarantee that the person will have an assisted death. It simply allows a person to know which organisation they can contact to request a consultation.

This is in line with good medical practice as stated in the Medical Council of New Zealand’s Good Medical Practice guide:

“If you feel your beliefs might affect the advice or treatment you provide, you must explain this to patients and tell them about their right to see another doctor. You must be satisfied that the patient has sufficient information to enable them to exercise that right.” 23

I believe stating the words “SCENZ Group” provides the minimum amount of information necessary to ensure access to services without unnecessary delays. A referral to SCENZ does not mean that the person will have access to an assisted death, only that a medical practitioner without a conscientious objection will be able to consider the person’s case.

The Attorney-General’s Section 7 Report on the Bill notes that although the medical practitioner is being compelled to assist the person to do something the medical practitioner does not agree with by telling the person about SCENZ, there is no issue with Section 13 of the Bill of Rights Act. The Attorney-General states, “I consider that the requirement to identify another medical practitioner is necessary to meet the objective of the Bill and is the most minimal impairment of the right [to freedom of conscience] possible.” He goes on to say, “I think the Bill appears to be consistent with the right to freedom of conscience affirmed in s 13 of the Bill of Rights Act.” 24

Therefore, I do not believe there is reason to change the mechanism by which patients learn

23 “Good Medical Practice”, December 2016, Medical Council of New Zealand <www.mcnz.org.nz>

24 Attorney-General, “Section 7 Report on the End of Life Choice Bill” at [64].

about SCENZ. It is not, as claimed, a burdensome task, but only requires brief, passive, and indirect involvement from the attending practitioner.

The approach written strikes an appropriate balance by ensuring that people requesting assisted dying have an alternative means of seeking medical care and also ensures medical practitioners are not directly involved in the referral process.

However, if it would alleviate concerns that medical practitioners will be forced into participating in the assisted dying process, I believe an alternative approach such as the one suggested above could be used as an alternative. However, it should be clear that this requirement is in no way as onerous as portrayed.

3.8 CONSCIENTIOUS OBJECTION OF ORGANISATIONS

Some submitters have raised concern that the Bill does not allow for organisations such as hospices to conscientiously object to involvement in assisted dying and ask for an amendment to extend the provision of conscientious objection to an organisation in its entirety.

Freedom of expression is an important principle to uphold and the Bill allows any medical practitioner the ability to conscientiously object, however, the Bill does not extend this provision to organisations as our public health care system should seek to provide equitable access to end of life care, including assisted dying.

New Zealand’s public health care system is divided into 20 District Health Boards which operate as separate organisations responsible for ensuring the provision of health and disability services to populations within a defined geographical area. Allowing an organisation to conscientiously object could give rise to a situation where publicly funded organisations, such as hospices, restrict and limit access to assisted dying as part of end of life care within an entire geographical area covered by a DHB and would force potentially very ill individuals to travel long distances for appropriate levels of health care.

Additionally, overseas evidence suggests that the majority of people who have had an assisted death did so while under the provision of hospice care, which is expected given that people who are eligible for an assisted death are in advanced stages of a terminal illness or have grievous and irremediable medical conditions. In Oregon, 90.9 per cent of people who died under the Death with Dignity Act in 2017 were enrolled in hospice care. 25 It would be unthinkable that a patient enrolled in hospice care would be denied access to assisted dying due to the fact that the organisation they are enrolled in objects to involvement in assisted dying in a public health care system.

The American Academy of Hospice and Palliative Medicine which represents over 5,000 medical and healthcare professionals specialising in hospice and palliative medicine states the following in their position statement on Physician Assisted Dying, “Physicians practicing in jurisdictions in which PAD [physician assisted dying] is legally permitted should never be obligated to participate in PAD if they hold moral or professional objections, nor should they

25 Oregon Health Authority Public Health Division, “Oregon Death with Dignity Act 2017 Data Summary,” 2018, at 6.

be prohibited from participating within parameters defined by relevant statutes and terms of employment.” 26

I do not believe that an organisation which receives government funding to provide health care to New Zealanders should be able to unjustly interfere in a doctor-patient relationship or bar a medical practitioner in its employment from providing the best level of medical care or treatment deemed appropriate to their patient, including assisted dying.

The Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying in Ontario stated in their final report that, “Health institutions, including regional health authorities and institutional providers (e.g., hospitals, hospices and long-term care facilities) are critical enablers of effective and equitable access to physician-assisted dying. Non-faith- based institutions should have an obligation to provide physician-assisted dying […]” 27

If a hospice does not wish to provide assisted dying in its facilities, it is possible that hospices could provide assisted dying in homes rather than inpatient units.

26 American Academy of Hospice and Palliative Medicine “Statement of Physician-Assisted Dying” June 24,

2016.

27 Ontario Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying, Final Report, 30 November

2015, at 3.

4.0

PROCESS AND ADMINISTRATIVE CONCERNS

4.1 COMMUNICATING WITH THE PATIENT AT INTERVALS VS MANDATORY

COOLING OFF PERIODS

A submitter suggested that subsection 8(2)(b) “The attending medical practitioner must talk with the person about his or her wish at intervals determined by the progress of his or her terminal illness or medical condition” was too onerous of a responsibility on medical practitioners while determining the eligibility and clear decision-making capability of the patient. Other submitters advocated for a mandatory cooling-off period to ensure the patient’s request was made with a sound mind.

I believe the clause written as stated above allows a medical practitioner to assess whether the

patient is making their wish known with a sound mind by talking with the patient in a series of assessments. The flexibility of the time frame works better than a mandatory cooling-off period. It is an acknowledgement that patients may make their request known to a medical practitioner at varying stages of illness and progression and a mandatory wait time may exclude those with only days or weeks to live. This clause enables the medical practitioner to use their discretion, which I do not think is too onerous of a task, to ensure that the patient makes their wish known to the medical practitioner not only when making the first request but throughout the process.

The Californian experience shows that a cooling down period comes with a cost. California’s End of Life Option Act (EOLOA) took effect on June 9, 2016 and contains a 15-day minimum cooling off period between the first and second oral requests. Research into the EOLOA in Kaiser Permanente, Southern California found 55 per cent of patients who initiated an inquiry into requesting assisted dying medication from their physician from June 9, 2016, through to June 30, 2017, had “an activities of daily living impairment and were on palliative care of hospice at the time of their inquiry,” and 74% had cancer. 28

During this period a total of 379 patients initiated an inquiry into requesting assisted dying medication but 71 (19 per cent) of these patients died before completing the initial EOLOA inquiry process. Of the 176 patients who took their request beyond an initial inquiry 39 (22 per cent) died before the medicine was dispensed.

I expect a similar proportion of patients requesting assisted dying in New Zealand will be in

the final stages of a terminal illness receiving specialist medical and hospice care, as is the case in California.

The Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying in Ontario also concluded the following in their findings:

While a mandated waiting/reflection period has been established in some jurisdictions, such as in the U.S. states that offer physician-assisted dying, we

28 Nguyen H.Q, Gelman, E.J, Bush T.A. “Characterizing Kaiser Permanente Southern California’s Experience With the California End of Life Option Act in the First Year of Implementation,” (2018) 178(3) JAMA Internal Medicine at E4.

believe that such an approach would impose an arbitrary barrier to access that would negatively impact both patient decision-making and physician judgement. Furthermore, a specific time period serves as a poor proxy for detecting decisions that are either not fully informed, not voluntary or made when a patient is not capable of fully appreciating the consequences of the decision being made.” 29

A mandatory cooling-off period would not make the Bill safer than it already is but would

instead exclude a large proportion of terminally ill patients from assessing the Bill that would

otherwise been have eligible at the later stages of their illness.

However, if a mandatory cooling off period is to be imposed, I would suggest providing an exception in cases where a person’s death is deemed imminent and/or the person could lose capacity, as is seen in Canada.

4.2 UN CONVENTION ON RIGHTS OF PERSONS WITH DISABILITIES

A submitter stated it would be difficult to envisage how the provisions of the Bill could be

accessed by those with dementia, cognitive impairments or similar disabilities which would allegedly make the Bill highly likely to contravene the UN Convention on Rights of Persons with Disabilities. The submitter pointed this out in the hope that the Bill’s eligibility would be expanded.

It is highly unlikely that this Bill contravenes the Convention on the Rights of Persons with

Disabilities as the Bill adopts a model of assessing capacity which underpins New Zealand medical law. To the extent it could be said to be out of step with the Convention, the same criticism must be laid at the feet of the Protection of Personal and Property Rights Act 1988

and the Mental Health (Compulsory Assessment and Treatment) Act 1992.

The reason it doesn’t contravene the Convention is that Article 12 requires countries to move towards a supported decision-making framework and does not require the abolition of all tests

of mental competency. Article 12 and Article 5 are about equal access to legal rights. The Bill

does not create legal rights which would be unequally distributed but rather it presents a narrow

and constricted exception to an otherwise criminal offence.

The Attorney-General’s section 7 report on the Bill of Rights did not identify even prima-facie limitation on the right to be free from discrimination on the basis of disability.

4.3 REFUSAL OF TREATMENT IN TERMINAL CONDITIONS

Submitters were concerned that people who have a condition such as ischemic heart disease or diabetes, which are treatable conditions, could become terminal within six months if the person refused, rejected, or did not adhere to treatment if they deemed it intolerable.

29 Ontario Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying Final Report, at 40.

Some submitters claimed that Section 4 (c)(i) “suffers from a terminal illness that is likely to end his or her life within 6 months” is therefore deemed too broad in scope as there is no requirement that the person requesting assisted dying must be undergoing treatment for their condition before requesting assisted dying.

A submitter queried, “What if treatments exists but the patient refuses them in favour of

requesting euthanasia?” while another concluded that it may be appropriate to consider trials

of treatments for a defined period on a patient to assess the reversibility of a patient’s disease

before allowing the patient to access assisted dying.

Under the New Zealand Bill of Rights Act 1990, any person has the right to refuse to undergo any medical treatment. Any person, whether having undergone medical treatment or having refused to receive medical treatment, should be able to access assisted dying through this Bill if they meet other eligibility criteria.

While it is understandable that some family members or medical staff, when coming to terms with a patient’s request for assisted dying, may wish that the patient undergoes treatment or a new trial to extend life, it is ultimately the choice of the patient.

No person will, or should be, forced to participate in medical trials to prove the irreversibility

of their terminal illness or forced to undergo medical treatment in order to appease doctors or

family members in the last months of their life.

This is not a requirement in any other jurisdiction with assisted dying laws. The New Zealand

Bill of Rights Act 1990 protects the rights of patients who may find themselves on the receiving end of such advice. I do not believe any amendment to the Bill is required to ensure the right

of any person who has in the past refused treatment for their condition or illness to qualify for

assisted dying and completely reject the suggestion of forced treatment or medical trials.

4.4 DEFINITION OF MEDICATION

It has been claimed that the definition of assisted dying in Section 3 as “means the

administration by a medical practitioner of a lethal dose of medication to a person to relieve his or her suffering by hastening death” could be interpreted as inconsistent with the Medicines Act 1981 as the Act defines a medication as administered “for a therapeutic purpose.” 30

Submissions which have attempted to be helpful by suggesting a change in the definition to “lethal drug” or “substance” in order not to contradict the Medicines Act have overlooked that Section 4 (a) of that Act defines a therapeutic purpose as “preventing, diagnosing, monitoring, alleviating, treating, curing, or compensating for, a disease, ailment, defect, or injury.”

In this regard a terminal illness or grievous and irremediable medical condition can be

classified as a ‘disease’. A disease is broadly defined in s 2 of the Medicines Act as including “any injury, ailment, deformity, disorder, or adverse condition, whether of body or mind.” The

30 Medicines Act 1981, s3(1)(a)(i)

administration of medicine to hasten death would be included in the s 4(a) definition of therapeutic purpose as ‘alleviating’ suffering from the ‘disease’.

Therefore, there is no need to amend the Bill as no inconsistency arises in this instance.

4.5 PSYCHOLOGIST AND PSYCHIATRIST SUPPORT

A submitter suggested that patients be offered help from psychiatrists and psychologists in

regard to coming to terms with end of life choices. I also believe this should be the case, however, this care should be optional and not mandatory for persons who have requested assisted dying.

It may be that a person wishes to talk through their options following their request and does not have a strong network of friends and family to discuss matters with or wishes to speak to someone impartial.

Submitters have misread the Bill as this issue is already provided for in the Bill. Section 8(e) states that the attending medical practitioner must “encourage the person to talk about his or her wish with others such as family, friends, and counsellors.” The Bill also states in Section 8 (g) that the medical practitioner must “ensure that the person has had the opportunity to talk about his or her wish with those whom he or she chooses.”

I do not believe this section needs amending to allow for explicit mention of the use of a

psychiatrist or psychologist to come to terms with death or reflect upon their decision. The list

of individuals the medical practitioner must encourage the person to talk to is not exhaustive

and medical practitioners using their discretion may encourage a psychologist or psychiatrist

depending on the person’s individual circumstances.

4.6 RISK OF THE MEDICATION

A submitter raised that the person requesting assisted dying must know the potential risks

involved with taking the medication in order to make a fully informed choice about the

medication to be prescribed.

It should absolutely be the case that any person requesting assisted dying should be made aware

of the risks involved with taking a lethal dose of medication, as medical practitioners have a

duty of care requiring them to provide appropriate information to patients.

The Bill requires a medical practitioner to give the person information about the irreversible nature of assisted dying and the anticipated impacts of assisted dying and tell the person about

multiple methods for administration of a lethal dose of medication. These are all important points to raise with the patient to ensure that the person understands the nature and consequence

of assisted dying, as is needed in order for the medical practitioner to form an opinion on

whether the patient is competent and eligible, as well as to provide choice to cater to every

individual case and circumstance.

The Bill, however, does not list the risks associated with each medication as this is already expected by medical practitioners as stated in the Medical Council of New Zealand’s Good Medical Practice standards which are set under Section 118(i) of the Health Practitioners Competence Assurance Act 2003. The standards state that medical practitioners should not provide treatment unless, “the patient has received all the information that a reasonable patient,

in that patient’s circumstances, would expect to receive about their condition and treatment

options, including the expected risks, side effects […]” 31

The Medical Council’s statement titled ‘Information, Choice of Treatment and Informed Consent, which was written to inform medical practitioners of the standards of practice expected for them to meet their legal obligations and is used as a standard by which a medical practitioner’s conduct is measured, states that a medical practitioner’s obligation under Right 6 of the Code of Health and Disability Services Consumers’ Rights states that patients are entitled to “an explanation of the options available, including an assessment of the expected risks, side effects, benefits, and costs of each option.” 32

While I can understand the submitter’s concern that risks associated with medication are not mentioned in the Bill, patients will receive the appropriate standard of care expected from medical practitioners, which includes being informed about any potential risks or side effects

of the medication chosen. No amendment is needed to the Bill to ensure good medical practice.

4.7 TRAINING, STANDARDS AND CODES FOR MEDICAL PRACTITIONERS

A submitter raised concern that there is no reference to guidance, support, or training for

medical practitioners and asks that the Bill specifies training will be made available to those

involved in the assisted dying process.

Training for medical and health practitioners, or any other individual involved in the assisted dying process, is not referred to in the Bill as this would be overly prescriptive and is not the purpose of primary legislation.

The Contraception, Sterilisation and Abortion Act 1977 makes no reference to training, support, or guidance for medical and health practitioners for the procedures and processes outlined within that Act. The Act does, however, allow for standards to be created.

The first national standards of care for women requesting abortions was subsequently developed in 2009 to produce optimal clinical outcomes and has been updated since guidelines became outdated. It is within these standards that training is referenced, as the abortion procedure requires specialised medical and surgical knowledge.

The submitter is mistaken in thinking that the Bill does not refer to guidance or support. The SCENZ Group set up under Section 19 will prepare standards of care, advise on the required medical and legal procedures, and provide practical assistance if requested in relation to the

31 “Good Medical Practice” at 32.

32 “Information choice of treatment and informed consent” Medical Council of New Zealand, at [7] <www.mcnz.org.nz>

administration of medication. It is up to the SCENZ Group to determine whether training is referenced in standards of care, but it does not have a place in primary legislation.

A submitter has raised that before the End of Life Choice Bill is enacted that clinical guidelines

should be developed, and another asks how they can work with SCENZ to be sure they do not contravene other professional obligations.

Medical professional bodies undertake to develop their own codes of conduct while health professionals have obligations as registered health professionals under the Health Practitioners Competence Assurance Act 2003. It is of note that medical professional bodies in jurisdictions where assisted dying has been introduced have engaged in the process and developed appropriate guidance and standards for health professionals. 33

The SCENZ Group will be able to advise professional bodies on medical and legal procedures, with the assistance of the ministry of health, while they update their codes of practice, and as stated above, will be able to provide standards of care for professionals to ensure professionals are aware of their obligations and how best to care for patients during the assisted dying process.

4.8 ADVERSE REACTIONS

It

has been raised that the Bill does not cover what to do if the patient has an adverse reaction

to

the medication. It has been asked whether the patient should be given secondary assisted

dying medication, or whether the medical practitioner should not intervene in the process.

Primary legislation should be used to outline the overarching principles and procedures of the Bill. This legislation should provide a framework that is then used to guide and develop standards of care and guidelines for the medical practitioners to act lawfully.

In

the case that a person may have an adverse reaction to the medication or the time until death

is

prolonged, jurisdictions have developed protocols to deal with these situations. In the

Netherlands, intravenous backup is discussed prior to the medication being taken and a time to

intervene is mutually agreed upon by both the medical practitioner and patient. This has become a provision in most provinces in Canada, however, it is not written into primary legislation. 34

The Collège des médecins du Québec has developed a guideline for doctors which contains a step-by-step guide, including the types of drugs to use, dosage, injection site and what to do in the event of complications. This guideline was developed in collaboration with the Order of Pharmacists of Quebec and the Order of Nurses of Quebec to work as a model for all assisted dying procedures.

33 For example, medical associations in Victoria have fully engaged in the development of the law as demonstrated in the Parliamentary Committee and Ministry Advisory Panel report. Medical associations in countries where assisted dying is legal have developed guidance and codes of practice for their members. See for example policy guidance from the College of Physicians and Surgeons of Ontario, https://www.cpso.on.ca/Policies-Publications/Policy/Medical-Assistance-in-Dying 34 Harty C, Chaput AJ, Buna D, Trouton K, & Naik VN, “The Oral MAiD Option in Canada Part 1: Medication Protocols, Canadian Association of MAiD Assessors & Providers” 2018 at [16-21]

The SCENZ Group will prepare these standards of care and advise on the required medical and legal procedures in the instance of an adverse reaction.

Therefore, although the Bill does not outline details on what procedures the medical practitioner must undertake, adverse reactions and subsequent actions to be taken by medical practitioners will be covered in guidelines developed by SCENZ and professional bodies.

4.9 CONFIDENTIALITY AND PRIVACY OF MEDICAL PRACTITIONERS

Multiple submitters have asked that the privacy and confidentiality of medical practitioners who elect to perform or provide assisted dying is ensured and maintained.

I agree that medical practitioners who opt to participate in assisted dying under the End of Life Choice Act should have their privacy maintained and believe that the names of medical practitioners which are kept by the SCENZ Group should remain confidential and not be published on any public reports or on a public platform maintained by the SCENZ Group. However, I do not believe the Bill needs to be amended to reflect this position.

The SCENZ Group must make and maintain a list of names and contact details of medical practitioners who are willing to act and the SCENZ Group will determine the best way to go about setting up the list. Because the list of medical practitioners is only to be used by SCENZ for the purpose of selecting a replacement medical practitioner or independent medical practitioner, there is no reason for this information to be published publicly and the information will therefore be maintained on a private database.

The registrar must also consult with the Privacy Commissioner before establishing the register which records prescribed forms, review committee reports and reports to the minister, and consult at regular intervals while maintaining the register, which is already provided for in the Bill.

There is, of course, nothing legislation can do to stop members of the public discovering which medical practitioners have performed an assisted death through hearing individual accounts of family members or friends connected to an assisted death. Therefore, it cannot reasonably be expected that medical practitioners will remain totally anonymous, as individuals, at their discretion, disclose their medical treatment to other people in their community or family.

4.10 LOCATION OF ASSISTED DYING

A submitter has raised that the Bill does not provide information on the location of the assisted dying process and act. They ask that the range of facilities where assisted dying is able to occur should be made explicit.

I see no need to create a list of locations where assisted dying can be administered. The Victorian legislation which allows for a person to take the medication at any time they see fit

does not provide for a list of locations or facilities where the death can take place and neither does the Oregon legislation.

In Oregon, the vast majority (90.2%) of patients died at home in 2017. 35 Given that the End of

Life Choice Bill requires a medical practitioner to supervise the administration of a lethal medication and the overseas evidence shows that the vast majority die in their own homes,

where they are comfortable, it is most likely all deaths will occur at home or in a hospice or hospital setting rather than in public settings. Therefore, it is unclear what exhaustively listing locations and facilities would seek to achieve. An amendment of this nature would only serve

to make the Bill overly prescriptive.

4.11 INDEPENDENCE OF MEDICAL PRACTITIONERS

A concern was raised that the independent medical practitioner appointed by SCENZ could be

from the same practice as the attending medical practitioner. I believe this concern is not so much about the place of work of the medical practitioners as it is about ensuring that medical practitioners are truly independent and not in a position to collude.

New Zealand is a small country where it is highly likely that medical practitioners working in the same field will know each other professionally or socially. The concern about colluding medical practitioners is a valid concern, however, it will be unable to occur due to the involvement of the Support and Consultation on End of Life in New Zealand Group (SCENZ)

in selecting independent medical practitioners. Removing the ability for the attending medical

practitioner to select the independent practitioner makes the Bill safer.

Section 19 (2) (b) states that SCENZ needs “to provide a name and contact details from the list, when this Act requires the use of a replacement medical practitioner or independent medical practitioner, in such a way as to ensure that the attending medical practitioner does not choose the replacement medical practitioner or independent practitioner.”

This goes above and beyond the process outlined in Victoria’s legislation which does not involve an independent group selecting the independent medical practitioner.

Whether SCENZ selects the independent medical practitioner based on their place of work, or any other characteristics or data, will be up to SCENZ and should not be prescribed in primary legislation. Flexibility will allow the group to select the second practitioner in a way that works best for every individual case.

4.12 ACCESSIBLE INFORMATION ON ASSISTED DYING

It has been raised that resources should be developed that can be used to assist in providing the

information required under legislation to people wishing to access assisted dying as they must

be able to find information on the process in readily available formats.

35 Oregon Death with Dignity Act 2017 Data Summary at 6.

Section 9 of the Legislation Act 2012 deals with the availability of electronic versions of legislation and ensures that electronic versions of legislation are able to be accessed or downloaded from the internet free of charge. It is important that any person in New Zealand is able to locate the End of Life Choice Act to understand the processes involved in assisted dying.

The legislation is highly likely to be distilled into an easily understandable format on the Ministry of Health’s website, given the Ministry of Health will service the SCENZ Group. However, in the low chance this does not occur, many organisations will produce their own materials to be easily accessed as there will be a wide public interest in understanding the information surrounding assisted dying.

For example, abortion.org.nz is a website sponsored by Istar Ltd and is one of many websites which provides high quality information on abortion access in New Zealand.

Groups and organisations which support assisted dying or allow assisted dying procedures to occur within their facilities will also provide accessible information.

Therefore, this is not needed to be specified in the End of Life Choice Bill.

4.13 THE PURPOSE OF THE REVIEW COMMITTEE

It has been suggested that the Review Committee appointed under Section 20 to consider

reports sent to it by the Registrar should have a specified purpose under the Act. Another submitter raised that it is unclear whether the review committee is comprised of permanent

members or if the members are invited to join based on issues presented to the review committee in specific cases.

The purpose of the Review Committee is clearly set out in the Bill under Section 21(2) which lists the functions of the committee. The Committee must consider reports sent to it by the registrar; report to the registrar about its satisfaction or otherwise with the cases; and recommend actions that the registrar may take to follow up cases. The review committee does not have the authority to act outside of the scope of advising the registrar.

It is also clear that the review committee has a role to receive information as specific cases of

assisted deaths occur and therefore the committee would be in continuous existence, however, I believe that the term of appointment of the committee should be left up to the minister’s discretion rather than stated in legislation.

4.14 SPECIALIST PRACTITIONER ADVICE

A submitter has recommended that medical practitioners are able to call on specialist advice

while acting as the attending or independent medical practitioner under this Bill. It has also

been suggested by many submitters that not all medical practitioners will have in depth

knowledge of all diseases and conditions and they should be able to, at their discretion, refer to a specialist medical practitioner with an understanding of the disease or condition.

The Bill, while implied, does not explicitly state that the medical practitioner may undertake usual medical standards of care such as referring a patient for tests and assessments when determining the patient’s prognosis. This is not needed to be stated as any medical practitioner under their statutory obligations found in the Code of Health and Disability Services Consumers’ Rights will be ensuring that their diagnosis is at an appropriate standard.

I suspect that most patients will have already been diagnosed with a condition and are under

specialist care by the time they will ask a medical practitioner for assisted dying. The study from Kaiser Permanante, California found 74% of patients who initiated the End of Life Option Act process had cancer and were receiving care primarily from specialists in the previous 12 months. 36 Therefore, a referral to a specialist medical practitioner was not needed.

I believe the processes regarding diagnosis and prognosis set out in the Bill are robust and amending to include an option for referral to someone with more in-depth knowledge on a particular condition would not serve to improve the Bill or make it safer.

Neither the assisted dying legislation in Canada or Oregon allow for a medical practitioner to refer the case on to a specialist medical practitioner to check eligibility as to the illness, disease or medical condition. However, both legislations require a second medical practitioner to act as a check on the first.

In order to become eligible for assisted dying under this Bill, two independent medical practitioners must conclude after examining the patient that the patient meets the eligibility criteria. The majority of these patients will already be receiving specialist care and have received either a terminal diagnosis or diagnosis of a grievous and irremediable medical condition.

If a medical practitioner is unable to ascertain a diagnosis or conclude that the patient’s condition has declined and is declining, or the patient’s death would be foreseeable in 6 months or less, then the patient is unlikely to be someone eligible for assisted dying and would not be

a person that this Bill serves to help.

36 “Characterizing Kaiser Permanente Southern California’s Experience With the California End of Life Option Act in the First Year of Implementation,” at E4.

5.0

AMENDMENTS TO ELIGIBILITY CRITERIA AND TIMING

5.1 GRIEVOUS AND IRREMEDIABLE MEDICAL CONDITION AND ADVANCED

STATE

Some submitters believe common conditions such as rheumatoid arthritis, depression, colour- blindness, bi-polar disorder, autism, anorexia, and insulin dependent diabetes would be captured under Section 4 (c)(ii) “a grievous and irremediable medical condition,” as any of these conditions could be considered to make life unbearable, and this clause should be removed in entirety. Others believe “grievous and irremediable” is too subjective and broad and could include anyone with a permanent disability.

It is true that the term “grievous and irremediable medical condition” is not defined in Section 3 of this Bill. However, this term does not capture the conditions stated above. This term was taken from the decision of the Supreme Court of British Colombia in Carter v. Canada. The Parliamentary Special Joint Committee found that the term “grievous and irremediable” did not need to be further defined stating “we believe that these terms are sufficiently well understood to operate without further statutory definition.” 37 The decision was subsequently made that the Canadian Parliament would enact assisted dying legislation which defined the term “grievous and irremediable medical condition” within that legislation.

Section 241.2(2) of the Canadian Criminal Code states the following:

Grievous and Irremediable Medical Condition

(2) A person has a grievous and irremediable medical condition only if they meet all

of the following criteria:

(a)

they have a serious and incurable illness, disease or disability;

(b)

they are in an advanced state of irreversible decline in capability;

(c)

that illness, disease or disability or that state of decline causes them enduring

physical or psychological suffering that is intolerable to them and that cannot be

relieved under conditions that they consider acceptable; and

(d) their natural death has become reasonably foreseeable, taking in to account all of

their medical circumstances, without a prognosis necessarily having been made as to

the specific length of time that they have remaining.

While not specifically defined in this Bill, the Bill deals with most aspects of the definition given in the Canadian legislation. 241.2(2)(b) is similar to Section 4(d) of this Bill with regard to an advanced state of decline in capability. 241.2(2)(c) is similar to Section 4(e) with regard to unbearable suffering that cannot be relieved in a manner considered tolerable. 241.2(2)(a) is similar to Section 4(c)(ii) of this Bill as a medical condition would be regarded as a serious and

37 Parliament of Canada, Report of the Special Joint Committee on Physician-Assisted Dying, February 2016, at

incurable illness, disease or disability and defining it as grievous and irremediable means it is both serious and incurable.

The only part of the Canadian definition that is different to the Bill is to do with the timeframe. 241.2(2)(d) states that death must be reasonably foreseeable, however, there is no similar clause in this Bill for grievous and irremediable medical conditions.

Due to the number of submissions from disability, medical, and legal organisations and individuals regarding the definition of “grievous and irremediable”, I suggest amending this section of the Bill.

It may be possible that including a time frame in Section 4 requiring natural death being reasonably foreseeable such as in Canada’s definition could be a sound amendment to bring it in line with that legislation.

However, I have accepted that the issue of assisted dying for people without terminal illnesses is more morally complex than for terminal illness only and therefore I suggest removing this clause from the End of Life Choice Bill. The rest of the Bill remains unaffected by the removal of this clause as section 4(c) is an either/or option.

However, I also suggest amending section 4(c)(i) such that somebody with a terminal neurodegenerative disease can access the Bill if their prognosis gives them 12 months or less to live.

I recommend removing s4(c)(ii) “a grievous and irremediable medical condition” and amending section 4(c)(i) to state “a terminal illness that is likely to end the person’s life within 6 months (or a disease, illness, or medical condition that is neurodegenerative and likely to end his or her life within 12 months).

5.2 PROGNOSIS OF 6 MONTHS

It has been claimed that predicting when someone is near the end of life can be difficult and specialists often get prognoses wrong. Submitters suggest this potential for inaccuracy would make enforcing legislation difficult. Other submitters expressed the wish to remove the 6- month prognosis criteria as they believed it is too narrow and discriminates against New Zealanders who are suffering severely but are not expected to die within 6 months.

Having a 6-month prognosis as a qualifying factor insures that a person eligible for assisted dying is somebody who in the view of two doctors’ professional opinions have an illness of a severity that is likely to end their life within 6 months. Once having become a person qualified to receive assisted dying the decisions then remain with the person. The current prohibition on assisted dying means that nobody has any choice. This Bill will allow people to decide for themselves. Those who hope to beat their prognosis or wait for new treatments to be developed will still have the choice, but the Bill will not require other people to suffer.

Jurisdictions in the United States where assisted dying is lawful require that death is likely within 6 months, due to administrative requirements associated with hospice care. The Victorian legislation states that to be eligible for an assisted death the person’s condition would be “expected to cause death within weeks or months, not exceeding 6 months or twelve months if it is a neurodegenerative disease, illness or medical condition in Section 9 (1)(d)(iii).”

The Victorian Parliamentary Committee recommended that assisted dying should be available to people at the end of their life (final weeks and month) without a time limit. It stated that:

“The Committee trusts the judgement of doctors, specialists and health practitioners in determining whether a patient is at the end of life, according to the nature of their condition and its likely trajectory,” 38 believing it is preferable for doctors to make an assessment rather than allocating a time limit. The Ministerial Advisory Panel subsequently noted that as Victoria had no timeframe imposed for access to hospice and palliative care services that “A timeframe should not be incorporated into legislation based on factors that are not relevant to the Victorian healthcare context.” 39 However, the Panel considered further clarification was preferable and recommended 12 months as the appropriate time as it took account of the clinical trajectory of neurodegenerative diseases. Ultimately Parliament settled on two timeframes, 6 months and 12 months, to reflect end of life clinical trajectory for advanced cancers and advanced progressive diseases respectively.

Canada made the decision to not require a prognosis of death but rather only requires that “the patient’s natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to specific length of time that they have remaining. 40

New Zealand does not have the same 6-month prognosis criteria for access to palliative care, so it is up to the Committee to decide whether a timeframe of 6 months, or longer, or no timeframe altogether is best suited to New Zealand.

While I sympathise with those who wish the Bill’s criteria to be expanded, I would recommend keeping the timeframe at “likely to end his or her life within 6 months” for a terminal illness as it broadly reflects terminology used in other jurisdictions and limits access to assisted dying to those whose illnesses have progressed to an advanced stage where death is foreseeable, providing assurance that people regarded as vulnerable to abuse, such as persons with disabilities or the elderly, would be safeguarded. But I also suggest providing some comfort to those suffering from a terminal neurodegenerative disease that is unlikely to end their life in 6 months and recommend amending this clause to be in line with the clinical trajectories of advances progressive diseases, as is the case in Victoria.

38 Parliament of Victoria Legal and Social Issues Committee, Inquiry into End of Life Choices, Final Report at

224.

39 Parliament of Victoria, Ministerial Advisory Panel on Voluntary Assisted Dying Final Report, 31 July 2017, at

72.

40 Bill C-14, s 241.2(e)

I recommend an amendment of s 4(c)(i) to include the following wording: “suffers from a terminal illness that is likely to end his or her life with 6 months (or a disease, illness, or medical condition that is neurodegenerative and likely to end his or her life within 12 months).”

5.3 DELAYING THE ASSISTED DYING PROCEDURE

It has been raised that a person who qualifies for and sets a date and time with their attending medical practitioner for the administration of medication must be able to reschedule for a later date if they have a change of mind on the day, so that the person does not feel forced to see through the process of assisted dying at the time chosen, if they’d prefer to go through with it at a later point, or not at all.

It is widely accepted that holding a prescription for medication for assisted dying can provide comfort to those with terminal and grievous and irremediable medical conditions. Not everyone who is provided with a prescription will end up having an assisted death but having the option to take the medication when their condition becomes too unbearable can provide relief. In Oregon in 2016, 204 patients were written prescriptions under the Death with Dignity Act and 36 of these patients (17.6 per cent) did not take the medication and died from other causes. 41

The External Panel of Options for a Legislative Response to Carter v. Canada heard from Professor Isabelle Marcoux that “there is a risk that individuals may feel some degree of social pressure to proceed with voluntary euthanasia if, for example, the procedure is scheduled to happen at a specific date and time, knowing that the administering physician has other scheduled engagements, or even that loved ones are present and are expecting that the procedure will happen. 42

Under this Bill, once a person has been told that they are eligible for assisted dying the medical practitioner will discuss with the person the likely timing of the assisted death and make provisional arrangements to be available to administer the medication at that time. However, it is then up to the person to tell the attending medical practitioner that they wish to exercise this option. When the person makes this decision and has talked through the methods of administration, the medical practitioner writes a prescription for the person at least 48 hours before the chosen time of administration. This process is robust. The patient has total control over whether to go ahead with the provisions set out in the Bill.

I can understand the concern that needing to set a time and date early in the piece may pressure the patient to see through a procedure that they may prefer to do at a later point in time, or not at all, and agree that greater flexibility to allow patient autonomy right up until the point of taking the lethal medication should be provided for. However, there must be a balance between setting a time and date and being able to postpone the administration of the medication

41 Oregon Health Authority Public Health Division, “Oregon Death with Dignity Act 2016 Data Summary,” 2017, at 56.

42 Government of Canada, External Panel of Options for a Legislative Response to Carter v. Canada:

Consultations on Physician-Assisted Dying Summary of Results and Key Findings, 2015, at 49

indefinitely as submitters have queried the matter of eligible persons losing competence before taking the lethal medication, and a long delay could bring the future competence of the person into question.

I believe the right balance between ensuring competence and autonomy can be struck by amending the Bill so that a person who has chosen to receive the medication can amend the time for administration of the medication before the procedure up to a point of three months, and if the person has a change of mind at the time of the procedure, allowing the person to be able to exercise the option of receiving assisted dying at a later time within these three months.

Therefore, I recommend adding a new clause to section 14(2) stating that the medical practitioner must give the person a prescribed form allowing the person to amend the time and date of administration for up to a period of three months. I also recommend adding a clause to section 15(3) stating that if a person chooses not to receive the medication, that the medical practitioner must “ask the person if the person would wish to exercise the option of assisted dying at another time.”

I recommend the addition of s14(2)(e) to s14 state that the medical practitioner must “provide the person with a prescribed from allowing the person to amend the time and date of administration for up to a period of three months,” and the addition of s15(3)(e) to s15 requiring the medical practitioner to “ask the person if the person would wish to exercise the option of assisted dying at another time.”

6.0

AMENDMENTS TO CLARIFY PROTECTIONS

6.1 MENTAL HEALTH CONDITIONS

It has been raised that the Bill does not explicitly exclude persons with mental disorders or intellectual disabilities from accessing the Bill and it has been suggested that the Bill could be amended to explicitly state that having a mental disorder alone is not cause for accessing the Bill.

Although Section 4(f) adequately deals with the issue of intellectual disability, the Bill does not explicitly mention exclusion from accessing assisted dying on the grounds of mental illness, as seen in Victoria.

The Victorian Voluntary Assisted Dying Act 2017 explicitly states that “a person is not eligible for access to voluntary assisted dying only because the person is diagnosed with a mental illness, within the meaning of the Mental Health Act 2014.” 43

Submitters have asked that a referral must be made to a psychologist/psychiatrist if there is any concern that the person is suffering from a mental illness, and others would like this to be a compulsory assessment before eligibility is confirmed.

The joint submission from People with Disabilities WA and the Australian Federation of Disability Organisations in Western Australia stated that “people with psychiatric disability (mainly depression) constituted 20% of referrals to the Netherlands assisted dying process, but none progressed. Likewise, in Oregon, none of the 292 people who have accessed assisted dying did so due to mental illness.” 44

The Report of the Joint Select Committee on End of Life Choices in Western Australia found that compulsory referral for specialist psychiatric assessments would delay the assisted dying process considerably and came to the view that these assessments should not be routinely undertaken. The report also stated that “individuals making life and death medical decisions – such as the decision to refuse medical treatment – are currently not required to undergo a psychiatric examination,” 45 and recommended a preference for the Oregon model.

The Oregon legislation does not exclude people with mental illnesses from obtaining lethal prescriptions but does state that “No medication to end a patient’s life in a humane and dignified manner shall be prescribed until the person performing the counselling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgement.” 46 This is not a compulsory assessment and is similar to the specialist referral provided for in the End of Life Choice Bill in Section 10(2)(c) which allows for the medical practitioner to refer the person to a specialist to determine competency.

43 Voluntary Assisted Dying Act Vic s9(2)

44 Submission No. 679 from People with Disabilities WA and the Australian Federation of Disability Organisations, The Joint Select Committee on End of Life Choices Western Australia, 15 November 2017 at 11.

45 Report 1 My Life, My Choice, at 216

46 Oregon Public Health Division, above n 7.

agree that the presumption of capacity is important, and I reject the notion that all persons should be subject to compulsory psychiatric assessments in order to be eligible for assisted dying.

I

The Victorian legislation states in Section 18(1) that “If the co-ordinating medical practitioner

is unable to determine whether the person has decision-making capacity in relation to voluntary

assisted dying as required by the eligibility criteria, for example, due to a past or current mental

illness of the person, the co-ordinating medical practitioner must refer the person to a registered health practitioners who has appropriate skills and training, such as a psychiatrist in the case of mental illness.” This is also a requirement for the consulting medical practitioner in Section

27.

I believe the Bill deals with mental health conditions adequately, however, adding a clause that

excludes access to the Bill on mental health grounds alone, as well as referring a person to a specialist if the medical practitioner is unsure whether a past or current mental illness is causing impaired judgement would bring comfort to many people by knowing there are extra safeguards in place.

Therefore, I recommend adding a clause to Section 4 that explicitly states that mental illness is not cause alone for accessing assisted dying through this Bill.

I also recommend adopting the Victorian model and amending Section 10(2)(c) to state, “the

person would be a person who is eligible for assisted dying if the person’s competence, including due to a past or current mental illness, were established in section 12.” Similarly, I recommend amending Section 11(3)(iii) to state, “the person would be a person who is eligible for assisted dying if the person’s competence, including due to a past or current mental illness, were established as described in section 12.”

I recommend the addition of s4(g) to s4 stating that “a person is not eligible for access to assisted dying only because the person is diagnosed with a mental illness.” I also recommend an amendment to s10(2)(c) to state “the person would be a person who is eligible for assisted dying if the person’s competence, including due to a past or current mental illness, were established in section 12,” and an amendment to s11(3)(iii) to state that “the person would be a person who is eligible for assisted dying if the person’s competence, including due to a past or current mental illness, were established in section 12.”

6.2 VULNERABLE PERSONS

Submitters were concerned that if the End of Life Choice Bill was passed into law, there would be an increase in the number of premature deaths of the elderly and people with disabilities. There is also a concern from submitters that disabled people may pursue physician-assisted dying because their quality of life is affected by a lack of resources and training of medical practitioners, and a number of submitters have asked for people with disabilities to be expressly

disqualified from accessing the Bill. Other disabled persons asked to be granted the same rights as other individuals.

Submitters also suggested that the elderly and people with disabilities are believed to be at risk of assisted dying coercion as a result of their own internalised feelings of loss of self-worth and being a burden. One submitter also asked to clarify whether a member of their church with Down Syndrome would be eligible to access assisted dying through the Bill.

The eligibility criteria in the Bill is narrow and will not put those with a disability or the elderly at risk. The Attorney-General came to this conclusion in his Section 7 report on the Bill. The joint submission from People with Disabilities WA and the Australian Federation of Disability Organisations in Western Australia also concluded that “There is no evidence to suggest, from either Oregon or the Netherlands data, that people with disabilities are at heightened risk of assisted dying.” 47

While it could be possible for a person with Down Syndrome to be viewed as presenting with

a grievous medical condition, they are not in a state of decline and therefore ineligible. This is the case for all persons presenting with a permanent disability. A disability is not cause for accessing the Bill, unless the person with a disability also has a terminal or other medical condition that would make them eligible. The same can be said for the elderly. Age alone will not qualify a person for assisted dying.

The Ministerial Advisory Panel in Victoria considered the impact a law change would have on people with disabilities and concluded that “disability does not satisfy the eligibility criteria for access to voluntary assisted dying, nor does disability exclude a person from eligibility to access voluntary assisted dying.” All people should have the same rights and protections under the law.

The trial judge in Carter v. Canada found that “a properly administered regulatory regime is capable of protecting the vulnerable from abuse or error.” 48 She pointed to expert evidence from Oregon and the Netherlands which showed that the “predicted abuse and disproportionate impact on vulnerable populations has not materialised.” 49

The Victorian Voluntary Assisted Dying Act 2017 explicitly states that, “a person is not eligible for access to voluntary assisted dying only because the person has a disability, within the meaning of section 3(1) of the Disability Act 2006.” 50 Washington State’s Death with Dignity Act is similar in stating in s70.245.020 (2) that “A person does not qualify under this chapter solely because of age or disability.” The Oregon model also has a clause explicitly stating access to assisted dying is not available by reason only of a disability.

Due to the concern surrounding the premature death of disabled persons, I recommend adding

a clause similar to the Victorian clause to Section 4 that explicitly states that, “a person is not eligible for access to assisted dying only because the person has a disability.”

47 Submission No. 679 from People with Disabilities WA and the Australian Federation of Disability Organisations at 11.

48 Carter v Canada at [3]

49 Carter v Canada at [25] 50 Voluntary Assisted Dying Act Vic s9(3)

Submitters who cited evidence from Washington and Oregon concerned that a large number of those who accessed assisted dying reported feeling like a burden misrepresent the reporting statistics filled out by patients. In the 2017 Oregon Death with Dying Act Data Summary, the three most frequent reported end of life concerns were “decreasing ability to participate in activities that made life enjoyable (88.1%), loss of autonomy (87.4%), and loss of dignity (67.1%).” 51 The statistics are similar in Washington. The three most frequently reported concerns were losing autonomy (90%), being less able to engage in activities making life enjoyable (87%), and loss of dignity (73%), while concern about being a burden on family, friends, and caregivers was only reported 56% of the time. 52 These forms allow people to tick all the boxes that apply and are therefore accumulate statistics.

The Ministerial Advisory Panel on Voluntary Assisted Dying also noted that a range of stakeholders raised concern about elder abuse and people feeling like a burden but concluded that the assisted dying process requiring two medical practitioners to reach the same conclusion, explore the patient’s concerns, discuss alternative treatment and support available would work as safeguards to ensure decisions are voluntary. 53

However, due to the concern regarding the elderly feeling like a burden and premature elderly death, I recommend including a clause which explicitly states that, “a person is not eligible for access to assisted dying only because of age.”

I recommend the addition of s4(h) to s4 to state that, “a person is not eligible for access to assisted dying only because the person has a disability.” I also recommend the addition of s4(i) to s4 stating that “a person is not eligible for access to assisted dying only because of age.”

6.3 ENDURING POWERS OF ATTORNEY AND ADVANCED CARE PLANS

It has been claimed that the Bill as drafted does not make it clear whether, or under what circumstances, an Enduring Power of Attorney or advanced care plan can be used to enable a person to access assisted dying when the person has lost mental decision-making capability and competency.

Other submitters, have correctly noted that there is no provision in the Bill for a personal care and welfare attorney to have any input on behalf of the person, however, are still concerned that without being explicitly stated, the role of the Advanced Directive is unclear.

Section 4(f) of the Bill was drafted in order to ensure the person making their request is mentally capable of understanding the nature and consequences of assisted dying. The intention is that assisted dying should only be available to people who are mentally capable of understanding the nature and consequences of assisted dying at the time of the request. There

51 Oregon Death with Dignity 2017 Data Summary at 6

52 Washington State 2017 Death with Dignity Act Report, Washington State Department of Health, March 2018, at 8

53 Ministerial Advisory Panel on Voluntary Assisted Dying: Final Report at 89

are many organisations and individuals who say this provision makes the Bill too narrow in scope, however, it remains the intention of this Bill that only the person in question can ask for an assisted death, and no person on their behalf. This provision rules out persons with dementia and Alzheimer’s, and other serious cognitive impairments.

The Attorney-General’s section 7 report on the Death with Dignity Bill 2003 found that provisions for advanced directives were inconsistent with the right not to be deprived of life in section 8 of the Bill of Rights Act. The Attorney-General found that the advanced directive process “does not provide the same degree of protection [as a request for contemporary assistance in dying] to ensure that a person who previously made an advance directive has understood the nature of the document he or she signed and the consequences of his or her decision.” 54

If a person writes a living will years before losing mental competency, there is no way to be

certain that the person did not change their mind in the subsequent years when they have lost mental competency. It is for this reason that the Bill has been drafted without provision for Enduring Powers of Attorney and advanced care plans as there needs to be mechanisms to check competence.

I suggest putting this argument to rest by adding a new clause which states explicitly that no contracts, wills, advanced care directives or any other agreements can be used to access assisted dying under the End of Life Choice Act, as is seen in Washington State’s Death with Dignity Act Section 70.245.160 and the Oregon Death with Dignity Act Section 127.870 3.12.

I recommend that the Bill states that, “No provisions in a contract, will, advanced care directive or other agreement, whether written or oral, to the extent the provision would affect whether a person may make or rescind a request for medication to end his or her life in a humane and dignified manner under the End of Life Choice Act 2017, shall be valid.”

6.4 COERCION AS GROUNDS FOR REFUSAL

A number of submitters raised that although the medical practitioner must do his or her best to

ensure that the person requesting assisted dying expresses his or her wish free from pressure from any other person under Section 8 of the Bill, this is not expressly stated as being grounds for a negative decision if the person meets all other eligibility criteria. They suggested that if

the person makes the request under pressure which is detected it should be grounds for ineligibility.

While it is implied in the Bill, I believe that there is merit in amending Section 10 to explicitly include the need for the attending medical practitioner to reach the decision that the person requesting assisted dying is unlikely to have been coerced when reaching their opinion.

54 Attorney-General, Section 7 Report on the Death with Dignity Bill 2003, at 3.

Although the attending medical practitioner is required to do his or her best to ensure that the person expresses his or her wish free from pressure from any other person as part of Section 8 and record the actions taken to comply with this requirement, Section 10 only allows the medical practitioner to reach one of three options: the person is eligible, the person is not eligible, and the person would be eligible if their competence were established.

Section 20 of the Victorian legislation states that the co-ordinating medical practitioner must

be

satisfied that the person is acting voluntarily and without coercion when assessing the person

as

eligible for access to voluntary assisted dying. 55

I recommend amending Section 10 to state that that medical practitioner’s opinion on eligibility

is subject to the medical practitioner being satisfied that the person is acting voluntarily as this

will bring clarity to any situation where a person would qualify but the medical practitioner believes the person does not request assisted dying voluntarily.

A medical fellowship did submit that detecting coercion is not part of medical training and it

would be difficult to detect coercion in the complex situation of a person expressing their wish

to die. However, the trial judge in Carter v. Canada found that after reviewing the evidence

tendered by medical practitioners and experts in patient assessment that “physicians were capable of reliably assessing patient competence, including in the context of life-and-death

decisions […] She found that it was possible to detect coercion, undue influence, and ambivalence as part of this assessment process.” 56

Therefore, I recommend the following amendment:

10 First opinion reached

(1)

This section applies after section 9 is complied with.

(2)

The attending medical practitioner must reach the opinion that –

(a)

subject to (d), the person is a person who is eligible for assisted dying; or

(b)

the person is not a person who is eligible for assisted dying; or

(c)

the person would be a person who is eligible for assisted dying if the person’s competence were established as described in section 12.

(d)

The medical practitioner is satisfied that the person expresses his or her wish

free from pressure from any other person.

6.5

COMPETENCE,

COGNITIVE

FUNCTION

TESTS,

AND

INTELLECTUAL

DISABILITY

A few submitters have expressed a wish that the Bill should expressly state the common law

assumption of competence and only require a third opinion when there are clear signs of incompetence. Another has stated that the wording of the Bill could be read as implying people with intellectual disabilities would be excluded because of their ability to understand the nature and consequences of assisted dying and others have called for the Bill to provide a more

55 Victorian Voluntary Assisted Dying Act 2017 Vic s20

56 Carter v Canada at [27]

descriptive definition of how competence is established in the Bill. One submitter suggested competence should be established using an objective, repeatable and widely used measure of cognitive function, such as the Montreal Cognitive Assessment.

The Bill contains robust safeguards for competency in its eligibility criteria. Section 4(f) states that a person who is eligible for assisted dying means a person who has the ability to understand the nature of assisted dying and the consequences for him or her of assisted dying, recognising that any choice exercised under this Bill must be done so competently.

In New Zealand, medical practitioners regularly assess competence by relying on the Code of Health and Disability Services Consumers’ Rights which is a regulation under the Health and Disability Commissioner Act. Right 7(2) stipulates that “every consumer must be presumed competent to make an informed choice and give informed consent, unless there are reasonable grounds for believing that the consumer is not competent. 57

Medical practitioners are under a statutory obligation to follow this code, so I see no reason to expressly state the assumption of competence within the Bill.

With regard to intellectual disability, the submitter is correct that the wording of the Bill would exclude people with intellectual disabilities, provided that the intellectual disability inhibited the person from understanding the nature and consequences of assisted dying. The Bill requires two medical practitioners to presume competence, if either believe the person does not have capacity they are able to refer to a specialist opinion from the SCENZ Group. It is imperative, and a key policy intent of this Bill, that the person makes an informed choice.

Having read the Montreal Cognitive Assessment, there are limitations to this test which include requiring a person to draw a cube, repeat sentences, and list words in under a minute. This test overlooks persons with speech and physical disabilities and I would caution against stipulating any particular tests in the Bill to establish competence as it would be overly prescriptive.

This Bill already goes into more detail than is usually the case in medical legislation in New Zealand and exceeds the typical approach to competency and consent, however, the Substance Addiction (Compulsory Assessment and Treatment) Act 2017 sets out a comprehensive list of attributes that a person must fail to demonstrate to be considered mentally incompetent to make an informed decision.

9 Capacity to make informed decisions

For the purposes of section 7(b), a person’s capacity to make informed decisions about treatment for a severe substance addiction is severely impaired if the person is unable to—

(a)

understand the information relevant to the decisions; or

(b)

retain that information; or

(c)

use or weigh that information as part of the process of making the decisions; or

57 Health and Disability Commissioner (Code of Health and Disability Services Consumer’ Rights) Regulation 1996, Right 7(2)

(d)

communicate the decisions.

This list of attributes is very similar to the Victorian assisted dying regime for competence, which is prescriptive and replicates the test for competency found in their Medical Treatment Planning and Decisions Act 2016:

4

Meaning of decision-making capacity

(1)

A person has decision-making capacity in relation to voluntary assisted dying if the person is able to—

(a)

understand the information relevant to the decision relating to access to voluntary

assisted dying and the effect of the decision; and

(b)

retain that information to the extent necessary to make the decision; and

(c)

use or weigh that information as part of the process of making the decision; and

(d)

communicate the decision and the person's views and needs as to the decision in

some way, including by speech, gestures or other means. 58

These legislations require a person to be able to reason and use judgement to weigh up a decision and link mental competence with the concept of informed consent. The issue of informed consent is met in the Code, however, Section 241.2(1)(b) and (e) of the Canadian Criminal Code requires a person to be capable of decision-making with respect to their health and be able to give informed consent. This approach is consistent with Oregon, Washington, and Quebec.

While the Bill is robust in competency requirements, I believe there is merit in providing clarity around the definition of competence and bringing it in line with overseas assisted dying legislation.

I recommend the committee adopt the changes set out below:

4A Capacity to make informed decision

(1)

For the purposes of section (4)(f)(i) and (ii), a person has the ability to understand the nature of assisted dying and the consequences for him or her of assisted dying if the person is able to –

(a)

Understand the information relevant to the decision relating to assisted dying;

(b)

Retain that information to the extent necessary to make the decision;

58 Victoria Assisted Dying Act 2017, s4(1)

(c)

Use or weigh that information as part of the process of making the decision;

(d)

Communicate the decision in some way, including by speech, gestures, or other means.

6.6 PALLIATIVE CARE

Some submitters claim the Bill needs to be specific about making sure patients are fully informed about other medical channels available, including palliative care.

I believe submitters who wish the Bill to be specific about other end of life options have missed the section of the Bill which makes sure that all patients who ask for an assisted death are fully informed about their options and told about palliative care. Section 8(2)(c) of the Bill alleviates this concern by stating, “the attending medical practitioner must ensure that the person understands his or her other options for end of life care.” I believe a medical practitioner would assume the clause would include a discussion about palliative care, and therefore this does not need to be expressly stated in the Bill.

However, to alleviate concern that patients are not advised about their other end of life care options, I suggest amending section 8(2)(c) to specifically state that the attending medical practitioner must “ensure that the person understands his or her other options for end of life care, including palliative care.”

I recommend amending s8(2)(c) to state that the attending medical practitioner must “ensure that the person understands his or her other options for end of life care, including palliative care.”

6.7 AGE LIMIT

In most jurisdictions where assisted dying is legal, other than the Netherlands and Belgium, there is an age limit of 18 years as a criterion for eligibility, and this age limit is also a condition in this Bill.

However, concern has been raised that while the Bill does not provide for under 18-year olds to access the Bill a court will override and widen the Bill. Other submitters have expressed the wish for the age limit to be removed entirely, lowered to 16, or raised.

The Attorney-General’s section 7 report on this Bill found that the age limit of 18 years appears to be inconsistent with section 19(1) of the Bill of Rights Act 1990 and cannot be justified under section 5 of the Act. Section 19(1) affirms the right to freedom from discrimination on

the basis of age commencing at 16 years. The Attorney-General’s report found that “16 and 17-year olds are disadvantaged vis-à-vis those aged 18 and over because they are ineligible for assisted dying.” 59

Parliament has chosen 16 as the starting point for discrimination on the basis of age and this is reflected in legislation dealing with medical procedures. Parliament has deemed 16-year olds mentally competent to make decisions relating to treatment. Under section 36 of the Care of Children Act 2004, and other common law, any person aged between 16 and 18 is able to consent to medical treatment as their consent to medical treatment “has the same effect as if the child were of full age […]” 60

However, as is the process for other laws, it is for the Attorney-General to point out inconsistencies between proposed law and the Bill of Rights Act and for Parliament to legislate as Parliament sees fit. Parliament and the Select Committee are not bound to recommend changes based on the Attorney-General’s report.

I support the age limit staying at 18 as a reflection of the gravity of the decision of assisted dying. However, to alleviate concern that the age limit will allow or disallow persons access to assisted dying I suggest including a clause along the lines of the Oregon and Washington models which state that assisted dying is not available solely because of age. The legislation in Oregon reads as follows: “No person shall qualify under the provision of ORS 127.800 (Definitions) to 127.897 (Form of request) solely because of age or disability.” 61

In New Zealand it is not possible to change age limits through the courts. If this were possible

people would head to court to change the age limit for drivers licenses and the sale of alcohol. However, only Parliament can make these changes.

I recommend the addition of s4(i) in s4 to state that “a person is not eligible for access to assisted dying only because of age.”

6.8 TALKING WITH THE FAMILY

A submitter suggested the wording in Section 8(2)(h)(ii) is too ambiguous as it is not clear that

the person does not have to pass on details of family members to a medical practitioner if they

do not wish, while other submitters suggested it should be a mandatory requirement for the medical practitioner to talk with family members of the patient.

Section 14 of the Bill of Rights Act states that everyone is entitled to freedom of expression, including the freedom to seek, receive, and impart information and opinions of any kind and

in any form. The Attorney-General’s Section 7 Report states that this right has been interpreted

as “including the right not to be compelled to say certain things or to provide certain

59 Section 7 Report on the End of Life Choice Bill at 24.

60 Care of Children Act 2004, s36

61 Oregon Dying with Dignity Act s127.805

information.” 62 As the Bill is currently drafted, it appears to the Attorney-General as consistent with the right to freedom of expression. The Bill strikes the correct balance between allowing patient confidentiality and ensuring the patient knows they can talk with family if they wish. Compelling a person to discuss their medical consultations with family or disclose the names of their family members to medical practitioners would breach this right.

Section 8(2)(f) states that the medical practitioner must “ensure that the person knows that he or she is not obliged to talk to anyone,” which includes family members, and Section 8(2)(h)(ii) states that the medical practitioner must do his or her best to ensure no coercion by “talking with members of the person’s family approved by the person.”

However, I do agree with the submitter. It is not immediately clear in Section 8(h) that the person is not obliged to pass on family information to the medical practitioner for investigation and I recommend amending Section 8(2)(h)(ii) to read “talking with members of the person’s family, if the person has approved any for this purpose.”

I recommend an amendment to s8(2)(h)(ii) stating “talking with members of the person’s family, if the person has approved any for this purpose.”

62 Attorney-General, Section 7 Report on the End of Life Choice Bill at [66]

7.0

PROCESS AND ADMINSTRATIVE AMENDMENTS

7.1 DEFINITION OF ASSISTED DYING AND ADMINISTRATION OF

MEDICATION

Multiple submitters raised that Section 15 (3) of the Bill, which deals with the administration

of the medication, allows for a person to trigger to administration of the medication as well as

the medical practitioner. There are four methods of administration listed: ingestion, triggered by the person; intravenous delivery, triggered by the person; ingestion through a tube; injection.

However, the interpretation of assisted dying as drafted in Part 1 of the Bill only allows for administration by a medical practitioner. Assisted dying is currently to be interpreted within

the Bill as “means the administration by a medical practitioner of a lethal dose of medication

to a person to relieve his or her suffering by hastening death.”

I suggest that this inconsistency can be easily dealt with by amending the interpretation of assisted dying to include the term ‘self-administration.’

It has also been raised that as Section 15(3)(a)(i) and (ii) explicitly state that ingestion and

intravenous delivery of the medication are triggered by the person that Section 15(3)(a)(iii), “ingestion through a tube,” should also contain the wording “triggered by the person.” The reasoning behind this suggestion is that pentobarbital dissolved in plain tap water can also be

a process triggered by a person as well as a medical practitioner.

I see no reason why a person should not be able to trigger their ingestion of the medicine via a tube if that is their wish and recommend that the clause is amended to reflect both the possibilities of ingestion triggered by the person or the medical practitioner.

Because of this change Section 16(4)(a) must be amended to incorporate Section 15(3)(a)(iii)

as the method would now describe self-administration.

I recommend amending the interpretation of assisted dying in s3 to state that “assisted dying means the self-administration or administration by a medical practitioner to a person to relieve his or her suffering by hastening death. I also recommend amending s15(3)(a)(iii) to state “ingestion through a tube; triggered by the person or medical practitioner,” and s16(4)(a) and (b) to state “(a) providing it to the person, for the methods described in section 15(3)(a)(i) and (ii) and (iii); (b) or providing it for the methods described in section 15(3)(a)(iii) and (iv).

7.2 DEFINITION OF MENTAL DISABILITY

A submitter noted that the words “mental disability” in Clause 9(4)(d)(iv) “The second part of

the form may be signed and dated by a person other than the person to whom it relates if the

person who signs and dates the part is not a person with a mental disability,” is an ambiguous term without a clear definition and is an outdated term offensive to many groups.

It is suggested that the term “mental disability” is amended to “intellectual disability.” Mental disability is not a term defined in the Bill, used in any other clause in the Bill, or in other legislation in New Zealand.

I recommend amending s 9(4)(d)(iv) to replace “mental disability” with “intellectual disability or mental disorder.”

7.3 CONSCIENTIOUS OBJECTION AND PROTECTION OF HEALTH PRACTITIONERS AND PHARMACISTS

It has been suggested by a large number of submitters that the Bill be worded in such a way as to protect the rights of health practitioners to conscientiously object and not be involved in the assisted dying process.

These submissions have overlooked Section 6(1) of the Bill which deals with this issue and states, “This Act does not require a person to do anything to which the person has a conscientious objection.” This takes into account all persons that are involved in the process, including specialists, health practitioners, pharmacists and other members of a medical team.

However, I appreciate that this is not where the issue of conscientious objection ends. I also understand that a number of health practitioners undertake work asked of them by doctors, including the administration of high doses of morphine that they understand kill their patients, and seek clarification that they will not be obliged to administer a lethal dose of medication under this Bill on behalf of a medical practitioner, or face discrimination.

Section 6(2) allows health practitioners to object to these acts despite any legal obligations to their employer, however, I believe it would provide comfort to many, including pharmacists and nurses, to expand Section 6 to be more specific, and further in line with Section 7 of the Victorian legislation which lists actions that health practitioners have the right to refuse, such as “to supply, prescribe or administer a voluntary assisted dying substance,” 63

I recommend amending s 6(1) to state, “This Act does not require a person to do anything to which the person has a conscientious objection, including supplying, prescribing, or administering an assisted dying medication.”

63 Victorian Voluntary Assisted Dying Act 2017 Vic, s7.

I

also suggest that the Bill should provide employment protection for medical practitioners and

health practitioners who refuse to act on grounds of conscience to provide protection from any

discrimination.

Therefore, I recommend adding a new clause in section 6 of this Bill making it explicit that if an employee has a conscientious objection no employer should be able to discriminate, as is provided for in Section 46 of the Contraception, Sterilisation, and Abortion Act 1977. 64

I recommend the following addition to s6:

6(3) It shall be unlawful for any employer -

(a)

to deny to any employee or prospective employee any employment, accommodation, goods, service, right, title, privilege, or benefit merely because that employee or prospective employee objects on grounds of conscience to do any act referred to in subsection (1); or

(b)

to make the provision or grant to any employee or prospective employee of any employment, accommodation, goods, service, right title, privilege, or benefit conditional upon that other person doing or agreeing to do anything referred to in that subsection.

(4)

Every person who suffers any loss by reason of any act or omission rendered unlawful by subsection (3) shall be entitled to recover damages from the person responsible for the act or omission.

7.4 PROFESSIONAL OBJECTION AND EXPERIENCE

The Bill allows for medical practitioners who have a conscientious objection to decline do so any act connected to assisted dying, however, submitters have asked that these protections be extended to medical practitioners who consider themselves professionally unqualified to provide assisted dying.

A medical practitioner is defined as a health practitioner who is registered with the Medical Council of New Zealand as a practitioner of the profession of medicine or is deemed to be so registered and holds a current practising certificate. A range of submitters have expressed that this definition would include practitioners from a wide range of fields and experience levels including plastic surgery, dermatology and ophthalmology, and junior doctors, who may feel professionally unqualified to give an opinion on certain cases.

While I understand the concern that a junior doctor or plastic surgeon may have in confirming

a diagnosis, I do not believe the Bill requires a clause providing medical practitioners the ability able to opt out of assisted dying due to being unable to give a professional opinion.

64 Contraception, Sterilisation and Abortion Act 1977, s46.

Firstly, the types of people requesting assisted dying are unlikely to be making their wishes known to a medical practitioner that is not already a specialist in a disease or illness with which the person presents. The vast number of assisted deaths in Oregon in 2017 were of people enrolled in hospice care (90.9 per cent). 76.9 per cent were diagnosed with cancer and 14 per cent with a neurological disease. 65 In Kaiser Permanante, California, 74 per cent of people requesting an assisted death were diagnosed with cancer and received care primarily from specialists in the previous 12 months. 66

Secondly, the end of life choice process requires a second independent medical practitioner to act as a check on the first medical practitioner. Although it is unlikely a person would approach

a medical practitioner without knowledge in the disease or illness which would make the person eligible for assisted dying, I do believe to alleviate the concern regarding junior medical practitioners the Bill could require one of the medical practitioners to have five years’ experience.

The Victorian Voluntary Assisted Dying Act deals with this issue in a similar manner and addresses the issue of professional qualification by specifying that at least one of either the co- ordinating or consulting medical practitioners must have practised for at least five years after completing a fellowship with a specialist medical college or vocational registration in s10(2).

I believe that if a provision along these lines were to be included in the Bill, it would alleviate concern regarding professional experience in the End of Life Choice process.

Therefore, I recommend amending the definition of independent medical practitioner to means

a medical practitioner with five years’ experience who is independent of an attending medical practitioner and the person.

I recommend amending the definition of independent medical practitioner in s3 to state “means a medical practitioner with five years’ experience who is independent of an attending medical practitioner and the person.”

7.5 TIMING OF CONSCIENTIOUS OBJECTION

Submitters have asked to clarify at what stage the medical practitioner must voice their conscientious objection and whether it is possible for a medical practitioner to change their mind and voice conscientious objection at any stage of the process.

Section 6 of the Bill deals with conscientious objection and allows for any individual to voice

a conscientious objection to any act. Section 7 sets out what a medical practitioner must do if a patient approaches them wishing for assisted dying and the medical practitioner has a conscientious objection.

65 Oregon Death with Dignity Act 2017 Data Summary, Page 9.

66 “Characterizing Kaiser Permanente Southern California’s Experience With the California End of Life Option Act in the First Year of Implementation” at E4.

I believe the Bill is quite clear that at the very first instance a patient voices their wish for assisted dying the medical practitioner must voice their objection, if any. It is in the patient’s best interest that any disclosure is made as early as possible to provide continuity of care. The Ministerial Advisory Panel on Voluntary Assisted Dying in Victoria came to the conclusion that “ideally the medical practitioner would recognise the person’s circumstances and conscientiously object when a first request is received.” 67

The Bill does not go into detail regarding what happens if a medical practitioner changes their mind regarding their conscientious objection at any point with a patient. I do not believe that this is needed to be set out expressly in the Bill. Guidelines regarding conscientious objection

in Canada and Victoria are found in the relevant medical association guidelines rather than in

legislation ensuring that procedures for disclosure are in line with their professional standards.

It is in a patient’s best interest that the timing of conscientious objection is referred to in non-

legislative guidelines and regulations rather than in legislation to provide for flexibility around individual cases, however, it is imperative that a requirement to state conscientious objection remains in the Bill to ensure that in most instances the patient has continuity of care during the assisted dying process.

For this reason, I recommend amending Section 7(1) to state ‘if’ rather than ‘when’. This change would ensure that conscientious objection is required to be stated at the first instance but also allows the medical practitioner to conscientiously object during the process and for the appropriate medical association to determine the best guidelines in these instances.

I recommend amending s7(1) to state “This section applies if – .“

7.6 ROLE OF NURSES AND SUGGESTION OF ASSISTED DYING

A submitter raises the point that there is nothing explicit in the Bill to prevent doctors and other

health practitioners from suggesting assisted dying to their patients as an option to consider when discussing end of life care.

Due to a number of submitters expressing their concern around potential forms of coercion, I am of the opinion that the Bill should be amended to restrict the discussion of assisted dying as an option in end of life choice discussions until a patient asks for information themselves from their medical and health practitioners.

An amendment of this nature would make the process of medical practitioners determining any possibility that the person has been coerced into requesting an assisted death more robust.

Additionally, it has been suggested that nurses spend more time interacting with patients in end of life care than medical practitioners and may be who the person asks for information about

67 Ministerial Advisory Panel on Voluntary Assisted Dying: Final Report, at 107.

assisted dying. It should be made explicit that persons can ask their health practitioners for information on assisted dying before requesting an assisted death from their medical practitioner.

The Ministerial Advisory Panel on Voluntary Assisted Dying in Victoria stated in their final report that “Health practitioners have considerable influence over the decisions and treatment options their patients may consider.” 68 The Panel recommended that health practitioners should not be able to initiate a conversation about assisted dying but could provide information, or explain where it could be found, if the patient requested it.

The Victorian Assisted Dying legislation states the following:

8 Voluntary assisted dying must not be initiated by registered health practitioner

(1)

A registered health practitioner who provides health services or professional care services to a person must not, in the course of providing those services to the person –

(a)

Initiate discussion with that person that is in substance about voluntary assisted dying; or

(b)

In substance, suggest voluntary assisted dying to that person.

(2)

Nothing in subsection (1) prevents a registered health practitioner providing information about voluntary assisted dying to a person at that person’s request.

(3)

A contravention of subsection (1) is to be regarded as unprofessional conduct within the meaning and for the purposes of the Health Practitioner Regulation National Law.

I recommend an amendment in line with the Victorian legislation:

6A Assisted Dying must not be initiated by registered health practitioner

(1)

A registered health practitioner who provides health services or professional care services to a person must not, in the course of providing those services to the person –

(a)

Initiate discussion with that person that is in substance about voluntary assisted dying; or

(b)

In substance, suggest voluntary assisted dying to that person.

(2)

Nothing in subsection (1) prevents a registered health practitioner providing information about voluntary assisted dying to a person at that person’s request.

(3)

A contravention of subsection (1) is to be regarded as a breach of professional conduct.

68 Ministerial Advisory Panel on Voluntary Assisted Dying: Final Report, at 92.

7.7

NURSE PRACTITIONERS

It has been stated that not all patients, especially those in rural areas, will have a medical practitioner as their primary clinician, however the Bill does not refer to the role that nurse practitioners play in the community and their function in providing assisted dying.

There are around 300 nurse practitioners in New Zealand who have the legal authority to practice beyond the level of a registered nurse and are more likely to work in rural areas and in underserved communities where their assistance may be required to fulfil requests under the End of Life Choice Act.

I do not believe that a nurse practitioner should be involved in the process of determining eligibility, however, as a nurse practitioner has the ability to issue death certificates and

prescribe medication, I suggest that these nurses should be able to assist a medical practitioner in the administration of the lethal medication and other requirements listed in sections 15 to

18.

The Provincial-Territorial Expert Advisory Group from Ontario’s final report stated that the Group “feels strongly that other health professionals – notably nurse practitioners, registered nurses and pharmacists – will need to be involved in the process of physician-assisted dying. Given increasing emphasis on interprofessional team practice as a standard of care in some settings, consideration of other health professionals will be necessary to ensure equal access and high quality of care.” 69

In instances where the attending medical practitioner has confirmed eligibility and handed the person a form allowing the person to choose a date and time of their choice, the medical practitioner should therefore be able to refer the patient to a nurse practitioner who may administer assisted dying on their behalf.

I recommend the addition of s15(7) to s15 to state that “the medical practitioner may appoint a nurse practitioner to act on his or her behalf to fulfil the requirements of the End of Life Choice Act in sections 15 to 18.”

7.8 IMMUNITY OF MEDICAL PRACTITIONERS, HEALTH PRACTITIONERS

AND PHARMACISTS

Sections 25 and 26 of the Bill provide protection and immunity to any person who acts in good faith and without negligence in providing or intending to provide assisted dying by carving out exceptions to the Crimes Act 1961 to allow the act of assisted dying to occur.

Many submitters and members of the public have asked to clarify the immunity provisions in the Bill and whether these provisions would allow a person involved in the assisted dying

69 Ontario Provincial-Territorial Expert Advisory Group of Physician-Assisted Dying, at 3.

process to be prosecuted for an act of killing without consent, or even with consent. Others have asked whether health practitioners, pharmacists and specialists are also provided immunity for acting in good faith and without negligence.

It is not my intention that no complaint can be made to the Health and Disability Commissioner, when any person believes that a medical practitioner has been negligent in providing assisted dying, or for the medical practitioner to be prosecuted for negligence. The intention of the Bill is to give people with a terminal illness or grievous and irremediable medical condition the option of requesting assisted dying, and the intention of these sections is to provide protection to those persons delivering the assistance, including health practitioners and pharmacists.

The approach of providing immunity within the Bill is different to the approach that was taken in the Contraception, Sterilisation and Abortion Act 1977 which changed the Crimes Act by decriminalising conduct in line with the Act. Having referred to the findings of Collins J in Seales v Attorney-General, I suggest a preferable approach to provide immunity would be to remove section 25 and 26 and replace with amendments to the relevant sections of the Crimes Act. Doing so would eliminate any confusion and place the exculpatory provision in Part 3 of the Crimes Act which deals with matters of justification or excuse.

In the judgement of Collins J, it was found that three sections of the Crimes Act prevented Lecretia Seales’ medical practitioner acting on Lecretia’s wish to have an assisted death. They are Section 63, 41, and 179 found at [83]-[99], [120-140], and [127-150] in the judgement respectively. I will address each of these sections separately below.

7.8.1 SECTION 63 CONSENT TO DEATH

No one has a right to consent to the infliction of death upon himself or herself; and, if any person is killed, the fact that he or she gave any such consent shall not affect the criminal responsibility of any person who is a party to the killing.

This section deals with two issues: no one has the right to consent to death; and no one has protection who acts upon another person’s consent to the infliction of death. The End of Life Choice Bill seeks to establish both a right for a person to seek an assisted death and protection from criminal and civil liability if a person provides an assisted death in good faith and without negligence under the provisions of the End of Life Choice Act. With this in mind, I recommend amending section 63.

I recommend amending s63 of the Crimes Act 1961 to state:

63 Consent to death

(1) Subject to subsections (2) and (3), no one has a right to consent to the infliction of death upon himself or herself; and, if any person is killed, the fact that he or she gave any such consent shall not affect the criminal responsibility of any person who is a party to the killing.

(2) Nothing in subsection 1 prevents a person from making a request for assisted dying pursuant to the provisions of the End of Life Choice Act, nor from consenting to the infliction of death upon himself or herself pursuant to the provisions of the End of Life Choice Act.

(3) No one who is a party to the killing of a person who has consented to the infliction of death upon himself or herself pursuant to the provisions of the End of Life Choice Act shall be guilty of any offence or liable in any civil proceeding by reason only of his or her participation in good faith and without negligence in the procedures contained in that Act.

This change would mean that a person who participates in good faith and without negligence will not be exposed to criminal or civil jeopardy, including health practitioners, specialists, and pharmacists. However, if they have not acted in good faith or have been negligent, they will be unable to take advantage of s63(3), and can be liable in civil and criminal proceedings. This also means the consent of the person who has died by assisted dying will not affect the criminal responsibility of the person who is a party to the killing even if they have been participating or purporting to participate in the procedures contained in the End of Life Choice Act.

7.8.2 SECTION 179 AIDING AND ABETTING SUICIDE

1. Every one is liable to imprisonment for a term not exceeding 14 years who—

(a) incites, counsels, or procures any person to commit suicide, if that person commits or

attempts to commit suicide in consequence thereof; or

(b)

aids or abets any person in the commission of suicide.

(2)

A person commits an offence who incites, counsels, or procures another person to

commit suicide, even if that other person does not commit or attempt to commit suicide in

consequence of that conduct.

(3) A person who commits an offence against subsection (2) is liable on conviction to

imprisonment for a term not exceeding 3 years.

This section means that it is an offense to incite, counsel, or procure any person to commit suicide, or to aid or abet any person in the commission of suicide.

I recommend amending s179 of the Crimes Act 1961 to state:

179 Aiding and abetting suicide

(1) Subject to subsection (4), every one is liable to imprisonment for a term

not exceeding 14 years who—

(a) incites, counsels, or procures any person to commit suicide, if that person

commits or attempts to commit suicide in consequence thereof; or

(b)

aids or abets any person in the commission of suicide.

(2)

Subject to subsection (4), a person commits an offence who incites,

counsels, or procures another person to commit suicide, even if that other person does not commit or attempt to commit suicide in consequence of that conduct.

(3)A person who commits an offence against subsection (2) is liable on conviction to imprisonment for a term not exceeding 3 years.

(4) No one shall be guilty of any offence under this section by reason only of

informing a person about the availability of, or enabling or assisting a person to request, assisted dying pursuant to the End of Life Choice Act nor by reason only of his or her participation in good faith and without negligence in the procedures contained in the End of Life Choice Act.

All this amendment seeks to achieve is to allow people to be informed about assisted death under the End of Life Choice Act. The protection in s 179(4) would allow medical and health practitioners and family and friends to discuss and assist a person to access an assisted death. It would remain a crime to coerce or encourage a person to have an assisted death. This provision works alongside a provision recommended in 7.6 which prohibits a health or medical practitioner from discussing assisted dying until the subject is raised by the person. These provisions work to protect a person from coercion but allow a discussion around assisted death to occur.

7.8.3 SECTION 41 PREVENTION OF SUICIDE OR CERTAIN OFFENCES

Every one is justified in using such force as may be reasonably necessary in order to prevent the commission of suicide, or the commission of an offence which would be likely to cause immediate and serious injury to the person or property of any one, or in order to prevent any act being done which he or she believes, on reasonable grounds, would, if committed, amount to suicide or to any such offence.

I recommend amending this section so that no person is able to prevent an assisted death from occurring, e.g., people picketing outside clinics and barring doors, relatives stopping a procedure from taking place, or detaining a person.

I suggest the following amendment:

41 Prevention of suicide or certain offences

(1) Every one is justified in using such force as may be reasonably necessary in order to prevent the commission of suicide, or the commission of an offence which would be likely to cause immediate and serious injury to the person or property of any one, or in order to prevent any act being done which he or she believes, on reasonable grounds, would, if committed, amount to suicide or to any such offence.

(2) No one is justified in using force to prevent a person from being killed or from killing himself or herself pursuant to the procedures contained in the End of Life Choice Act.

If all of these changes are made then clauses 25 and 26 should be removed from the Bill.

7.9 TIKANGA AND TE AO MĀORI

There are concerns that the Bill does not take into account the cultural, spiritual, or tikanga concerns of Māori and Pasifika peoples. However, Māori and Pasifika are not homogenous groups, with those in favour and those opposed to assisted dying.

A

poll conducted by Curia Research in May 2018 showed most Māori were strongly in favour

of

choice. The poll asked the following question: “Some people believe that the law should be

changed to allow doctors to assist in ending the life of a person with an incurable illness, if the

patient requests it. What is your view on whether voluntary euthanasia should be legal – strongly oppose, somewhat oppose, somewhat favour, strongly favour?” 47 per cent of Maori were strongly in favour, 27 per cent were somewhat in favour, 4 per cent were neutral, 4 per cent were somewhat opposed, 13 per cent were strongly opposed, and 4 per cent were unsure. 70

National Party MP Nuk Korako stood in Parliament at the first reading of this Bill and said, “Euthanasia is foreign to Māori and has no place in our society,” 71 however, at a public meeting hosted in Rangitata in August this year on the End of Life Choice Bill, Te Hurinui Renata Karaka-Clarke stood and spoke of his Te Ao Māori view saying,

“Tikanga changes. Tikanga evolves. When I was a child, cremations were rare, now they’re common place in Te Ao Māori. When I was a child, all of the possessions of the deceased were buried with them, now they’re handed on to other people. Those cultural values have changed over time, so too has my perspective on the choice of life or death.” 72

70 Euthanasia Poll, Curia Market Research, 20 June 2018.

71 13 December 2017, 726 NZPD

72 Te Hurinui Renata Karaka-Clarke, “End of Life Choice Bill Public Meeting” (Ashburton, 27 August 2018).

There are cultural and spiritual practices to be undertaken in Maori and Pasifika communities before someone passes and when they are close to death. It is essential that the needs of New Zealand’s ethnic communities are met. I do not believe they need to be set in primary legislation, but appropriate guidelines should be developed to ensure awareness and appropriate standards of care.

For this reason, I recommend amending clause 19(1) “The Director-General must establish the SCENZ Group by appointing to it the number of medical practitioners that the Director- General considers appropriate,” to include a number of Māori and Pasifika representatives that the Director-General considers appropriate.

Clause 19(2)(g)(i) states, “The function of the SCENZ Group are in relation to the administration of medication under section 16 to prepare standards of care.” The inclusion of Maori and Pasifika representatives would ensure medical practitioners are aware of cultural practices that may occur during the administration of medication guaranteeing they are able to meet appropriate standards of care.

I recommend amending s19(1) to state “The Director-General must establish the SCENZ Group by appointing to it the number of medical practitioners, health practitioners, specialists, Mā ori and Pasifika representatives, disabled persons organisations, anaesthetists, and pharmacists, and other persons that the Director- General considers appropriate.

7.10 SCENZ GROUP AND REVIEW COMMITTEE MEMBERSHIP

A number of submitters and members of the public have asked that the membership of the SCENZ Group and the Review Committee is expanded to be more inclusive of other practitioners and professionals that work alongside medical practitioners, including pharmacists, psychologists, nurse practitioners, health practitioners, anaesthetists, disabled persons organisations and iwi representatives.

Section 19 (1) states that the Director-General must establish the SCENZ Group by appointing to it the number of medical practitioners that the Director-General considers appropriate. Medical practitioners are defined in the Bill as health practitioners registered with the Medical Council of New Zealand.

The need for medical practitioners to be involved is to advise on the required medical and legal procedures in relation to the administration of medication, prepare standards of care, and to assist in making and maintaining a list of medical practitioners who are willing to act for the purpose of assisted dying.

However, the SCENZ Group also makes and maintains lists of health practitioners, specialists, and pharmacists who are willing to act for the purposes of this Act. These professionals are registered with the Pharmacy Council, the Psychologists Board and the Nursing Council respectively, not the Medical Council.

I

see no reason why pharmacists, physiologists and health practitioners should be excluded

from the SCENZ Group when there is a need for these lists to be maintained and advice to be given in regard to preparing standards of care for professionals acting under the End of Life Choice Act.

I also believe the Director-General should be able to appoint a disabled persons representative

and Māori and Pasifika representatives to help prepare standards of care. This would ensure medical practitioners and health practitioners are aware of cultural and spiritual practices that may occur during the administration of medication and will be able to meet appropriate

standards of care for all individuals.

Therefore, I recommend amending Section 19(1) to state the following: “The Director-General must establish the SCENZ Group by appointing to it the number of medical practitioners, health practitioners, specialists, Māori and Pasifika representatives, disabled persons organisations, anaesthetists, and pharmacists, and other persons that the Director General considers appropriate.

Similarly, the End of Life Review Committee should be open to all health practitioners not just medical practitioners, as nurse practitioners or health practitioners may assist the medical practitioner in the administration process and their actions will understandably be under scrutiny too. I would recommend amending s 20 (1)(c) to state “another medical practitioner

or health practitioner.”

I recommend amending s19(1) to state “The Director-General must establish the SCENZ Group by appointing to it the number of medical practitioners, health practitioners, specialists, Mā ori and Pasifika representatives, disabled persons organisations, anaesthetists, and pharmacists, and other persons that the Director- General considers appropriate. I also recommend amending s20(1)(c) to state “another medical practitioner or health practitioner.”

7.11 INSURANCE

A submitter raised that the Bill does not point to the validity of life insurance policies in the

event of an assisted death.

While no specific section of the Bill refers to insurance, section 25 which states “a person who dies as a result of the provisions of assisted dying is taken for all purposes to have died as if assisted dying had not been provided,” covers what should occur in the case of health, life, or accident insurance when a person has requested an assisted death.

A person who is found eligible for assisted dying would have an illness or condition that would

have led to death in the foreseeable future. Section 25 allows for people who wish to have an assisted death, and qualify under very narrow circumstances, the ability to have an assisted death and for it not to negatively affect insurance payments and other annuities.

The Ministerial Advisory Panel of Voluntary Assisted Dying in Victoria recommended that “accessing voluntary assisted dying should not affect insurance payments or other annuities. The person has not made a decision to end their life prematurely, they have made a decision about the manner of their death and they should not be punished for this.” 73

If assisted dying had not taken place the person’s condition would inevitably lead to death and therefore they should be treated as though they died from that condition for the purposes of insurance and annuities.

Jurisdictions within the United States with assisted dying laws such as Oregon, Washington, California, and Vermont all treat the issue of insurance in this manner.

Although I believe Section 25 covers the issue of insurance, I have encountered scepticism of the insurance industry from a number of members of the public at meetings across the country and believe adding a section explicitly stating the validity of insurance policies would bring comfort to many wishing to request an assisted death.

I suggest an amendment along the lines of the Oregon Death with Dignity Act s. 127.875.

I recommend the addition of a new section titled ‘Insurance,’ stating the following:

“The sale, procurement, or issuance of any life, health, or accident insurance or annuity policy or the rate charged for any policy shall not be conditioned upon or affected by the making or rescinding of a request, by a person, for medication to end his or her life in a humane and dignified manner under the End of Life Choice Act. Neither shall a qualified patient’s act of ingesting medication to end his or her life in a humane and dignified manner have an effect upon a life, health, or accident insurance or annuity policy.”

7.12 THE PURPOSE OF THE REGISTER

It has been suggested that in order to provide transparency and as a matter of good practice and public interest that the registrar’s information be made public. A submitter has also suggested that it should be made apparent how the information kept by the registrar will be used and by whom.

I believe statistical information relating to assisted dying should be made public and the Bill addresses this by requiring the registrar to report to the minister annually on a range of statistical matters under Section 21. It will be at the minister’s discretion whether this information is made public and therefore does not need to be legislated for in the Bill.

73 Ministerial Advisory Panel on Voluntary Assisted Dying Final Report at 150.

The register will record the prescribed forms held by the registrar; the review committee’s reports to the registrar; and the registrar’s reports to the minister. This information will not be shared with other agencies for any purpose outside of administering the assisted dying process, except for the purposes of a prosecution. This is private health information that should not be made public and where it is made public for statistical reasons, the information should be anonymised.

The Privacy Commissioner will be consulted, as required in Section 21(3), before the register is established and at regular intervals to ensure all privacy principles are met and upheld.

To clarify explicitly how the register maintained by the registrar will be used, I recommend the addition of s21(7) to Section 21 stating,

(7) The register and information held by the registrar must remain private except for the purposes of:

(a)

the prosecution of an offence; or

(b)

the review committee; or

(c)

anonymised reporting by the registrar to the minister.

7.13 CREMATION FORMS

Concerns were raised that clause 25 “a person who dies as a result of the provision of assisted dying is taken for all purposes to have died as if assisted dying had not been provided,” would be out of step with cremation forms as these forms require a description of the ‘mode of death.’ It is common practice among physicians that both death certificates and cremation forms are filled out at the same time.

The draft legislation of this Bill amends the Births, Deaths, Marriages, and Relationships Registration (Prescribed Information) Regulation 1995 to allow for cause of death to show both the underlying condition which made the person eligible for assisted dying as well as the fact that the person died as a result of assisted dying.

Cremation forms, in the same way, refer to cause of death or ‘mode of death.’ 74 The cremation forms, however, are not based on or subsequent to death certificates and amendment will be needed to ensure consistency between the Cremation Regulations 1973 and Births, Deaths, Marriages, and Relationships Registration (Prescribed Information) Regulations 1995.

74 Births, Deaths, Marriages, and Relationships Registration (Prescribed Information) Regulation 1995, Schedule 1, Form B.

I recommend a new section is added to the Bill in the same manner as the proposed amendment in respect of death certificates:

Amendment to Cremation Regulations 1973

(1) This section amends the Cremation Regulations 1973.

(2) Replace regulation schedule 1 form B 9 with:

9(a) immediate cause – the disease, injury, or complication which causes death, subject to subparagraph (a)(i):

(a)(i) in respect of a person who dies as a result of the provision of assisted dying under the End of Life Choice Act 2017, the fact that the person died as a result of the provision of assisted dying under the End of Life Choice Act 2017.

9(b) morbid conditions (if any) giving rise to the immediate cause (place the conditions in chronological order beginning with the most recent), subject to subparagraph (b)(i):

(b)(i) in respect of a person who died as a result of the provision of assisted dying under the End of Life Choice Act 2017, the cause or causes of death as if assisted dying had not been provided.

(3) Replace regulation schedule 1 form B 10 with:

What was the mode of death, subject to subparagraphs 10(a) What was its duration, subject to subparagraph 10 (b)?

10 (a) in respect of a person who died as a result of the provisions of assisted

dying under the End of Life Choice Act 2017, the fact that the person died as a result of the provision of assisted dying under the End of Life Choice Act 2017.

10 (b) in respect of a person who died as a result of the provision of assisted dying

under the End of Life Choice Act 2017, the interval between onset of the cause of

death and death by assisted dying, in respect of each cause of death.

8.0

OTHER AMENDMENTS

8.1 ACCESS TO PALLIATIVE CARE

Submitters have raised issue with the amount of funding palliative care receives from the Government and are concerned that legalising assisted dying could lead to a restriction of resources for palliative care. It has been stated that more funding in this area would alleviate a lot of perceived discomfort about the Bill.

Palliative care plays a vital role in alleviating suffering and providing relief for many New Zealanders at the end of their lives. Assisted dying should not and will not replace the need for high quality palliative care provision and it should continue to be an option given to patients in medical care, alongside the option of assisted dying.

While palliative care works to alleviate suffering for many, the best palliative care cannot provide relief in all cases. The Ministerial Advisory Panel Report in Victoria noted that palliative care and assisted dying were often portrayed as opposing means to alleviate suffering and made the following statement on how the two could work together:

“The panel is of the view that the delivery of person-centred care must recognise a person’s decisions about their end-of-life care. For some people this may include voluntary assisted dying. Person-centred care will rely on palliative care services continuing to provide palliative care to people based on clinical needs, not on what they believe or a choice they may make about the timing and manner of their death.” 75

It is not the case that jurisdictions which have legalised assisted dying have reduced funding for palliative care. Instead, a 2015 study into the Belgian and Benelux experience found the opposite. Assisted dying was legalised in Belgium in 2002 and government expenditure for palliative care increased by 108% between 2002 and 2011 while total healthcare expenditure increased by only 2.34 per cent between 2003 and 2010. 76 The study also found that between 2005 and 2012 Luxembourg and the Netherlands increased the number of palliative care beds available to 47.40 and 17.28 per million respectively, higher than the number of palliative care beds available in the United Kingdom, Ireland or Sweden, all jurisdictions without assisted dying laws. 77

The trial judge in Carter v Canada also rejected the argument that “legalization of physician- assisted dying would impede the development of palliative care in the country…” 78 Therefore, it is clear that palliative care and assisted dying can be complementary.

On 20 March 2018, Maggie Barry MP, deputy chair of the Justice Committee, lodged the Access to Palliative Care Bill. The purpose of that Bill is to ensure that every New Zealander has a right to access professional, high standard specialist palliative care and appropriate support services wherever they live across the country by amending the New Zealand Public

75 Ministerial Advisory Panel on Voluntary Assisted Dying Final Report at 39-40.

76 Chambaere K, Bernheim JL. “Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience.” (2015) 41 Journal of Medical Ethics, at 657 - 658

77 Ibid at 658

78 Carter v Canada at [26]

Health and Disability Act 2000 and the Health and Disability Services Act 2001. The proposed amendments would place specific obligations on DBHs to provide appropriate palliative care to those that need it and would require DHBs to include information in their annual reports regarding their compliance with these obligations, and to develop strategies for the provision of these services. The Bill also requires that the Minister of Health ensures services standards for palliative care are in force at all times.

I have listened to the concerns regarding palliative care in New Zealand and I believe there is merit in Maggie Barry’s proposal. However, it is up to chance whether or not her Bill is ever debated in Parliament.

Therefore, I recommend that the Committee put in place the option for an amendment to the End of Life Choice Bill to include the Access to Palliative Care Bill as an SOP for the House to vote on. I understand that the Committee of the Whole House has the power to do this.

8.2 REFERENDUM

It has become apparent to me that a large number of New Zealanders wish the Bill to be voted on in a referendum. In July, I attended a public meeting on the End of Life Choice Bill hosted by National MP Alistair Scott in Carterton. The question of whether a referendum should be held on this issue was put to those in attendance and the overwhelming majority of people in the hall raised their hands in agreement that the Bill should be put before the public in the form of a referendum.

This support has been reflected elsewhere in Parliament amongst MPs, in the public and in debate on the issue. New Zealand First MP Tracey Martin spoke strongly in favour of a referendum in her speech to the First Reading to the Bill, saying that it was ‘wrong for temporarily empowered MPs’ to make such a legislative change. What has become clear to me is that there is substantial support in the public and in parliament for this Bill to be confirmed by referendum. I recommend that the Select Committee equip the Committee of the Whole house with a Supplementary Order Paper giving effect to a referendum for its consideration.

I recommend that the Select Committee puts in place the option for an amendment to the End of Life Choice Bill to include an SOP that would provide that the Bill, having passed third reading, receives Royal Assent upon receiving majority support in a referendum held in conjunction with a General Election.

BLANK

9.0 CLAUSE BY CLAUSE ANALYSIS

Section

Amendment

 

Reference

s3

Amendment – assisted dying means the self-administration or administration by a health or medical practitioner to a person to relieve his or her suffering by hastening death.

See 7.1

s3

Amendment - means a medical practitioner with five years’ experience who is independent of an attending medical practitioner and the person.

See 7.4

s4(c)(i)

Amendment – A terminal illness that is likely to end the person’s life within 6 months (or a disease, illness, or medical condition that is neurodegenerative and likely to end his or her life within 12 months.)”

See 5.1, 5.2

s4(c)(ii)

Remove – a grievous and irremediable medical condition

 

See 5.1

s4(g)

Addition – A person is not eligible for access to assisted dying only because the person is diagnosed with a mental illness.

See 6.1

s4(h)

Addition – A person is not eligible for access to assisted dying only because the person has a disability.

See 6.2

s4(i)

Addition – A person is not eligible for access to assisted dying only because of age.

See 6.2, 6.7

s4A

Addition - 4A Capacity to make informed decision

 

See 6.5

(1)

For the purposes of section (4)(f)(i) and (ii), a person has the ability to

understand the nature of assisted dying and the consequences for him or her of

assisted dying if the person is able to –

 

(a)

Understand the information relevant to the decision relating to assisted dying;

(b)

Retain that information to the extent necessary to make the decision;

(c)

Use or weigh that information as part of the process of making the decision;

(d)

Communicate the decision in some way, including by speech, gestures, or other means.

s6(1)

Amendment - This Act does not require a person to do anything to which the person has a conscientious objection, including supplying, prescribing, or administering an assisted dying medication.

See 7.3

s6(3) and (4)

Addition – 3 It shall be unlawful for any employer

See 7.3

(a)

to deny to any employee or prospective employee any employment, accommodation, goods, service, right, title, privilege, or benefit merely because that employee or prospective employee objects on grounds of conscience to do any act referred to in subsection (1); or

(b)

to make the provision or grant to any employee or prospective employee of any employment, accommodation, goods, service, right title, privilege, or benefit conditional upon that other person doing or agreeing to do anything referred to in that subsection.

(4)

Every person who suffers any loss by reason of any act or omission rendered unlawful by subsection (3) shall be entitled to recover damages from the person responsible for the act or omission.

s6A

Addition – 6A Assisted Dying must not be initiated by registered health

See 7.6

 

practitioner

 

(1)

A registered health practitioner who provides health services or professional care services to a person must not, in the course of providing those services to the person –

(a)

Initiate discussion with that person that is in substance about voluntary assisted dying; or

(b)

In substance, suggest voluntary assisted dying to that person.

(2)

Nothing in subsection (1) prevents a registered health practitioner providing information about voluntary assisted dying to a person at that person’s request.

(3)

A contravention of subsection (1) is to be regarded as a breach of professional conduct.

s7(1)

Amendment – This section applies if -

See 7.5

s8(2)(c)

Amendment - ensure that the person understands his or her other options for end of life care, including palliative care.

See 6.6

s8(2)(h)(ii)

Amendment – Talking with members of the person’s family, if the person has approved any for this purpose.

See 6.8

s9(4)(d)(iv)

Amendment – A person with an intellectual disability, or a mental disorder.

See 7.2

s10(2)(c) and (d)

Amendment -

See 6.1, 6.4

 

(1)

This section applies after section 9 is complied with.

(2)

The attending medical practitioner must reach the opinion that –

(a)

subject to (d), the person is a person who is eligible for assisted dying; or

(b)

the person is not a person who is eligible for assisted dying; or

(c)

The person would be a person who is eligible for assisted dying if the

person’s competence, including due to a past or current mental illness, were established in section 12.

(d)

The medical practitioner is satisfied that the person expresses his or her

wish free from pressure from any other person.

s11(3)(iii)

Amendment – The person would be a person who is eligible for assisted dying if the person’s competence, including due to a past or current mental illness, were established in section 12.

See 6.1

s14(2)(e)

Addition – provide the person with a prescribed form allowing the person to amend the time and date of administration for up to a period of three months

See 5.3

s15(3)(a)(iii)

Amendment – Ingestion through a tube; triggered by the person or medical practitioner

See 7.1

s15(3)(e)

Addition - ask the person if the person would wish to exercise the option of assisted dying at another time

See 5.3

s15(7)

Addition - the medical practitioner may appoint a nurse practitioner to act on his or

See 7.7

her behalf to fulfil the requirements of the End of Life Choice Act in Sections 15 to

18.

s16(4)(a) and (b)

Amendment – If the person chooses to receive the medication, the attending medical practitioner must administer it by –

See 7.1

(a)

(providing it to the person, for the methods described in section 15(3)(a)(i)

 

and (ii) and (iii);

 
 

(b)

or providing it, for the methods described in section 15(3)(a)(iii) and (iv).

s19(1)

Amendment - The Director- General must establish the SCENZ Group by appointing to it the number of medical practitioners, health practitioners, specialists, Mā ori and Pasifika representatives, disabled persons organisations, anaesthetists, and pharmacists, and other persons that the Director-General considers appropriate

See 7.9, 7.10

s20(1)(c)

Amendment - Another medical practitioner or health practitioner.

 

See 7.10

s21(7)

Addition – (7) The register and information held by the registrar must remain private except for the purposes of:

See 7.12

 

(a)

the prosecution of an offence; or

(b)

the review committee; or

(c)

anonymised reporting by the registrar to the minister.

s25

See 7.8

 

Remove – A person who dies as a result of the provision of assisted dying is taken for all purposes to have dies as if assisted dying had not been provided.

 

s26

Addition - Amendments to Crimes Act 1961 (1) This section amends the Crimes Act 1961.

 

See 7.8

(2) Replace section 63 with:

63 Consent to death

(1)

Subject to subsections (2) and (3), no one has a right to consent to the infliction of death upon himself or herself; and, if any person is killed, the fact that he or she gave any such consent shall not affect the criminal

responsibility of any person who is a party to the killing.

(2) Nothing in subsection 1 prevents a person from making a request for assisted dying pursuant to the provisions of the End of Life Choice Act, nor from consenting to the infliction of death upon himself or herself pursuant to the provisions of the End of Life Choice Act.

(3) No one who is a party to the killing of a person who has consented to the infliction of death upon himself or herself pursuant to the provisions of the End of Life Choice Act shall be guilty of any offence or liable in any civil proceeding by reason only of his or her participation in good faith and without negligence in the procedures contained in that Act.

(3) Replace section 179 with:

179 Aiding and abetting suicide (1) Subject to subsection (4), every one is liable to imprisonment for a term not exceeding 14 years who—

(a)

incites, counsels, or procures any person to commit suicide, if that

person commits or attempts to commit suicide in consequence thereof; or

(b)

aids or abets any person in the commission of suicide.

(2) Subject to subsection (4), a person commits an offence who incites, counsels, or procures another person to commit suicide, even if that other person does not commit or attempt to commit suicide in consequence of that conduct.

(3) A person who commits an offence against subsection (2) is liable on conviction to imprisonment for a term not exceeding 3 years.

 

(4) No one shall be guilty of any offence under this section by reason only of informing a person about the availability of, or enabling or assisting a person to request, assisted dying pursuant to the End of Life Choice Act nor by reason only of his or her participation in good faith and without negligence in the procedures contained in the End of Life Choice Act.

 

(4) Replace section 41 with:

 

41 Prevention of suicide or certain offences (1) Every one is justified in using such force as may be reasonably necessary in order to prevent the commission of suicide, or the commission of an offence which would be likely to cause immediate and serious injury to the person or property of any one, or in order to prevent any act being done which he or she believes, on reasonable grounds, would, if committed, amount to suicide or to any such offence.

(2) No one is justified in using force to prevent a person from being killed or from killing himself or herself pursuant to the procedures contained in the End of Life Choice Act.

 

s26

Remove - A person is immune from liability in civil and criminal proceedings for

 

See 7.8

   
 

acts or omissions in good faith and without negligence in providing or intending to provide assisted dying.

s29

Addition – Effect on living wills. No provisions in a contract, will, advanced care directive or other agreement, whether written or oral, to the extent the provision would affect whether a person may make or rescind a request for medication to end his or her life in a humane and dignified manner under the End of Life Choice Act 2017, shall be valid.

See 6.3

s30

Addition – Amendment to Cremation Regulations 1973 (1) This section amends the Cremation Regulations 1973.

See 7.13

(2) Replace regulation schedule 1 form B 9 with:

9(a) immediate cause – the disease, injury, or complication which causes death, subject to subparagraph (a)(i):

(a)(i) in respect of a person who dies as a result of the provision of assisted dying under the End of Life Choice Act 2017, the fact that the person died as a result of the provision of assisted dying under the End of Life Choice Act 2017.

9(b) morbid conditions (if any) giving rise to the immediate cause (place the conditions in chronological order beginning with the most recent), subject to subparagraph (b)(i):

(b)(i) in respect of a person who died as a result of the provision of assisted dying under the End of Life Choice Act 2017, the cause or causes of death as if assisted dying had not been provided.

(3) Replace regulation schedule 1 form B 10 with:

What was the mode of death, subject to subparagraphs 10(a) What was its duration, subject to subparagraph 10 (b)?

10

(a) in respect of a person who died as a result of the provisions of assisted dying

under the End of Life Choice Act 2017, the fact that the person died as a result of

the provision of assisted dying under the End of Life Choice Act 2017.

10

(b) in respect of a person who died as a result of the provision of assisted dying

under the End of Life Choice Act 2017, the interval between onset of the cause of

death and death by assisted dying, in respect of each cause of death.

s32

Addition – Insurance The sale, procurement, or issuance of any life, health, or accident insurance or annuity policy or the rate charged for any policy shall not be conditioned upon or affected by the making or rescinding of a request, by a person, for medication to end his or her life in a humane and dignified manner under the End of Life Choice Act. Neither shall a qualified patient’s act of ingesting medication to end his or her life in a humane and dignified manner have an effect upon a life, health, or accident insurance or annuity policy.”

7.11

10.0 SUBMISSIONS CONSIDERED

24-7 YouthWork Trust Alzheimers New Zealand Anglican Bishops of Dunedin, Christchurch, Te Waipounamu, Nelson, Wellington, Waiapu, Waikato and Taranaki, and Auckland Anglican Care Canterbury/Westland Anglican Church of Aotearoa New Zealand Anglican Dioceses of Christchurch and Dunedin Anglican Living (a division of the Social Council of the Diocese of Christchurch) Aotearoa New Zealand Association of Social Workers (Wellington Branch) Australian and New Zealand College of Anaesthetists Australian and New Zealand Society for Geriatric Medicine Australian and New Zealand Society of Palliative Medicine Inc. Autistic Advocacy Network NZ Avonhead Baptist Church Baptist Churches of New Zealand Care Alliance Charitable Trust Cancer Nurses College Caritas Aotearoa New Zealand Catholic Women’s League of Aotearoa New Zealand Christian Alliance Christian Medical Fellowship of New Zealand Church of The Nazarene College of Nurses Aotearoa (NZ) Inc Conservative Party of New Zealand Cranford Hospice Trust Cromwell and Upper Clutha Parish Dignitas Disability Faith Community Disabled Persons Assembly Disability Rights Commissioner – Human Rights Commissioner DLA Piper Elevate Christian Disability Trust End of Life Choice Society Euthanasia-Free NZ Every Life Research Unit Faith Bible Church Family First Gordon Copeland MP Grace Presbyterian Church of New Zealand Hibicus Hospice HOPE: Preventing Euthanasia & Assisted Suicide Submission Hospice North Shore Hospice New Zealand Hospice Southland Hospital Palliative Care New Zealand Hospital Palliative Care Team Auckland City Hospital Humanist Society of New Zealand (Inc) IHC New Zealand Inc

Intercessors for New Zealand InterChurch Bioethics Council Justice & Peace Commission: Catholic Diocese of Auckland Lamb of God Christian Community Little Sisters of the Poor Living and Dying Well Lutheran Church of New Zealand Maxim Institute Mercy Healthcare Auckland Limited National Council of Women of New Zealand ND Folaha Society of development Inc New Life Churches International New Zealand Association of Rationalists and Humanists New Zealand Catholic Bishops Conference New Zealand Christian Network New Zealand Council for Civil Liberties New Zealand Health Professionals Alliance Inc New Zealand Law Society New Zealand Medical Association New Zealand Nurses Organisation New Zealand Psychologists Board Not Dead Yet Aotearoa Office of the Privacy Commissioner Pacific Child, Youth and Family Integrated Care Trust Palliative Care Nurses Pastoral Council of the Parish of St Francis of Assisi Parish, Ohariu, Wellington Pax Christi Aotearoa-New Zealand Perpetual Guardian Peter Brown MP Pharmacy Guild of New Zealand Presbyterian Women Aotearoa NZ ProLife Foundation Pylat Council Remote New Zealand Mission Project Royal Australasian College of Physicians Right to Life Speak Up Kō rerotia Society of St Vincent De Paul St Anthony’s Parish St Christopher’s Anglican Church St Columban’s Mission Society St John of God Hauora Trust St Paul’s Presbyterian Church South West Baptist Church TalkLink Trust Te Hui Amorangi ki te Upoko o te Ika The Centre for Science & Citizenship Trust The Lucy Foundation The Motor Neurone Disease Association of New Zealand The Nathaniel Centre

The Pharmaceutical Society of New Zealand The Royal Australian and New Zealand College of Psychiatrists The Royal Australasian College of Physicians The Selwyn Foundation Thinking Matters NZ Foundation Skylight Trust The Salvation Army New Zealand, Fiji and Tonga Territory Third Age Health The Royal New Zealand College of General Practitioners Voice for Life Inc Waipuna Hospice Incorporated Whole Lotta Life Foundation Women’s Forum Australia Working Together Group Youth For Life Matt Vickers Ceredwyn Jones Berend de Boer David Stewart Mullan Xiomara Aragon Ian Lange-Smith Bob Clark Catherine Gillies Alex Rae Andrew Butler Adele Rae Clive Ellis Carol Greene Cherry Thelmo-Fernandez Cate Mawby Darrell Rapata Clare Daubney Claire McLean Daniela Clark-Rourke Christopher Shepard Clare-Ann Fransen Catherine Gormley Catherine Lipski Caro Davidson Collette Blockley Carol Sutton Cary Milkop Colleen Gorman Cheryll Palmer Cathy Morris Cecilia Thomas Chang Liu Dr Eileen McManus Christopher Barry Dr Joanna Wang

Chris Beale Charlotte Reinders Carolyn Rossiter Charles Cloete Conrad Ebbitt Desmond Cotter Denis Kelly Danielle Schrieber Chris Redwood Dr Hein Pretorius Daniel Than Christine Shue Dr Brent Boon Dr Jessica Crampton Dianne Boon D Kean Christine M Canty David Spratt Denise Gardner Denise Arnold Daniel Voogt David Klinkhamer Cara Fonseca-Ensor Dr Vicki Jones Daisy Alpay Cinnamon Puna Dr Heidi Perkins Catharine George David Millar Dr Bronwyn Armstrong Clive Auckram Cedric Pillay Dr Jane Smith Claire Millichamp David Allan Christina Bushby Christopher Hay Clare Campbell Catherine Sinton Caleb McDonnell Cheree Ormond Cherie Wildon Clare Grant Carol Brits Christine Walker Carmel Frew Chloe Wood Christine Salmon Conrad Smith Carol Hudson

Charlie Higgison Chris Leonard Carol Bailey Catherine Rogers Dr A Heath Christine McDonald David Edgar Dr Kim Rollo Dr Dean Dawson David Holmes Colin Rennie David Klein Dr Bridget Williams Christie Neilson Cheryl Jones Deborah Minehan Corinna Chong Dominic Orr Dr Brendon Aish Diane Hunt Derek Cahill Colette Lonergan Derek de Jong Charl Scheepers David Bilton Derek Young Doreen Hobbs Peter Cowley