About us - Example letters

 

 

These are real letters that have been sent in the past and are representative of the type of content and respectful tone taken by this group.

 

Doctors for Assisted Dying Choice


http://drs4assisteddyingchoice.org                                                                  [email protected]

 
   




   

Submission to the Health, Communities, Disability Services and Domestic and Family Violence Prevention Committee

Parliament of Queensland

Inquiry into aged care, end-of-life and palliative care

                                                                         and voluntary assisted dying


 

 

Doctors for Assisted Dying Choice

 

Doctors for Assisted Dying Choice (http://drs4assisteddyingchoice.org) is a National Organisation of Australian medical practitioners, in current practice or retired, who are committed to attaining a legal choice for rational patients, who for reasons of intolerable suffering with no realistic chance of cure or relief, wish to gently end their lives, at a time of their choosing, in the company of those whom they choose.

 

To achieve our broad aim, we seek to strengthen societal and political recognition of the need for voluntary assisted dying, in Australia.  We do so by providing evidence that the practice of voluntary assisted dying can be ethical, is actively sought by patients in Australia, and is acceptable to Australians.

 

While Doctors for Assisted Dying Choice is a national group, state Convenor Groups develop submissions to assisted dying inquiries for their particular jurisdictions. Submissions have previously been made to ACT, NSW and Victorian government inquiries. During 2019 Convenor Groups from Queensland and Western Australia are making submissions to their respective state inquiries.

 

Queensland Convenor Group / Submission Authors [1]

 

 

Dr Sid Finnigan MBBS, FRANZCO

Professor Malcolm Parker MBBS, M Litt, M Hlth & Med Law, MD

[2]

Dr Heather McNamee MBChB, MRCGP (UK), FRACGP, DFFP

Dr Jenny Brown MBChB, MRCP(UK), FRACP

Dr Peta Higgs MBBS, FRANZCOG, CU

Dr Peter Stephenson MBBS (Lon.)

 

Contact details:

Dr Sid Finnigan

E: S&S Finnigan [email protected]

PO Box 3218 BIrkdale Q 4159

M: 0402 798 440

 

The Queensland Convenor Group of Doctors For Assisted Dying Choice approves this submission to the Inquiry into aged care, end-of-life and palliative care and voluntary assisted dying.

 

 

Scope of submission

 Doctors for Assisted Dying Choice commends the Queensland government for instituting the Inquiry into aged care, end-of-life and palliative care and voluntary assisted dying. The Inquiry will receive a large number of submissions, which will address one, two or all three of the areas that it covers. Because Doctors for Assisted Dying Choice are primarily committed to the legalisation of voluntary assisted dying (VAD) for competent people, with appropriate safeguards, this submission will focus on the issues for consideration relating to VAD.

 

However, we will also include attention to a number of the issues for consideration relating to palliative care, as there are a number of points of intersection between VAD and palliative care. The implementation in Queensland of VAD requires conceptual clarity and justified arguments regarding these points of intersection. 

 

 

Date of Submission

5 April 2019

 

 Introduction

 Doctors for Assisted Dying Choice strongly advocate for VAD as a necessary and an unexceptionable component of the medical duty of care and good medical practice at the end of life. Rather than seeing VAD as a step too far, we see it as integral to the continuity of medical care for certain suffering patients, and entirely consistent with medical ethics and social values. Doctors have a duty to relieve suffering and minimise its duration, as well as to treat and where possible cure diseases, together with a duty to respect patients’ wishes in relation to their lives, including their dying. For certain patients, these duties will only be properly discharged by providing medical assistance to die. Over the course of this Inquiry, the Committee will receive many testimonies exemplifying futile end of life suffering within the Queensland community.

 

 

In relation to this cohort of patients, the following observations are pertinent:

·        

Continuing medical treatment can sometimes be futile and in some cases harmful.

·        

Traditional medical care, including palliative care, cannot relieve all symptoms and suffering endured by some patients.

·        

Requests by patients for VAD can be competent and well grounded, just as certain requests for the removal of life-saving treatment are currently deemed to be.

·        

The absence of lawful VAD has sometimes led to “underground” interventions by doctors and patients. Such unregulated actions in some cases has caused harm.

[3]

·        

There is no social consensus on the “value of suffering”, and no legitimacy in anyone other than the patient making a final determination of whether their suffering is unbearable or not, or whether their suffering serves any purpose or not.

·        

The knowledge that VAD is available can have significant palliative value by effectively allaying anxiety that patients experience in relation to their impending death, by improving the quality of their remaining life, and by preventing suicide.

[4]

 

There is strong evidence that across the Australian population, people desire genuine choice concerning the nature of their death and wish to be able to plan for their death.

 

Queensland has the opportunity, through this Inquiry and by subsequently enacting laws to permit VAD, to extend this choice to a cohort of citizens to whom it has until now been denied.

 

This submission is structured as responses to the issues for consideration relating to VAD (questions 25-38), with cross references where appropriate to the issues for consideration relating to palliative care (in particular questions 18, 20 and 21). In some cases, responses to more than one question are grouped together, due to the conceptual links and overlaps between them. Recommendations are made at the end of the submission to questions 25-38, in the same groupings.

 

Issues for consideration relating to VAD

 

Q25. Should voluntary assisted dying (VAD) be allowed in Queensland? Why/why not?

 

Q26. How should VAD be defined in Queensland? What should the definition include or exclude?

 

Q27. If you are a health practitioner, what are your views on having a scheme in Queensland to allow VAD?

 

Doctors for Assisted Dying Choice strongly urge the enactment of legislation to allow VAD in Queensland. At present there is a gap in the provision of appropriate end-of-life care for Queensland citizens/patients. VAD is necessary in a small but significant cohort of patients, whose suffering cannot be relieved to their satisfaction by conventional medical care including palliative care, who wish to determine how their  remaining time is spent, and who wish to have control over the circumstances and timing of their dying.

 

These desires are strongly represented in a recent survey by the COTA Federation (Councils on the Ageing), which found that

 “The vast majority of survey participants (84%) indicated that they support the introduction of assisted dying in their state or territory, provided the right protections and legislation were in place, while just 16% were opposed”.[5]

 

 There were no demographic differences in these results, including by state/territory. Thus a very high proportion of Queenslanders answered yes to this question:

 “Assisted dying” is the practice whereby a person suffering from a terminal illness or incurable condition has the right to request a lethal drug from a doctor to end their life. Assuming there are sufficient protections and legislation in place, do you support or oppose this for your state/territory?”

 

Statistically similar results were obtained with statewide research conducted in 2018 in Queensland by Reachtel Polling, for the Clem Jones Group and Dying With Dignity Queensland.

[6]

Of 834 Queenslanders polled:

 

 

·        

79% strongly supported or supported VAD with the assistance of medical professionals for terminally ill people with no hope of recovery;

·        

73% agreed that terminally ill people with no hope of recovery should be offered VAD if they believe palliative care does not work for them to relieve their suffering;

·        

80% agreed that they would like VAD to be available if they were terminally ill and considered their suffering intolerable.

Majority support for these responses occurred in all gender, age and political affiliation categories.

 Note that the Inquiry’s Q18 asks “Are palliative care and end-of-life care services meeting the current needs of Queenslanders? Why or why not?” The fact that 73% of Queenslanders agreed that terminally ill people with no hope of recovery should be offered VAD if they believe palliative care does not work for them to relieve their suffering, strongly suggests that Queenslanders consider that palliative care is not a sufficient response to all end-of-life challenges. This does not mean that Queenslanders do not see a need to expand palliative care services. Indeed, regarding Q20 “How will demand for palliative and end-of-life services change in Queensland as the population increases and ages, and what changes to the delivery of these services will be needed to meet future demands?”, Doctors for Assisted Dying Choice strongly supports greater funding and provision of palliative care services, including equal access for patients in rural and remote areas.

 

The strong positive support for allowing VAD in Queensland reflects steadily increasing public support over many decades for VAD in Australia, as well as in other countries. Some of these jurisdictions, now including Victoria, have enacted appropriate legislation.

Public support for VAD is not a sudden flurry of libertarian ideology, but a longstanding, considered public stance that has enjoyed steady but significant growth. Health practitioners including doctors should support the strong public endorsement of legislative change to allow VAD in Queensland (and elsewhere), because medicine and health care are essential public services. Furthermore, VAD is consistent with the fundamental principles of medical and health care ethics, rooted as these are in compassion, the duty to relieve suffering and minimise its duration, and the (albeit qualified) duty to respect patient autonomy.[7]

For an increasing number of doctors, voluntary assisted dying is the epitome of deep-felt care for their patients, and the final respectful and compassionate step in the chain of continuous care. For these doctors, not helping those patients who are eligible under the relevant law for voluntary assisted dying would be to abandon them, and this is clearly inconsistent with professional medical ethics. This position has been endorsed by the future doctors of Australia, as represented by the Australian Medical Students’ Association (AMSA). The AMSA supports the legalisation of VAD, subject to appropriate safeguards, and that doctors (including palliative care specialists) should be actively involved in the design and adoption of any VAD legislation.[8]

 

VAD has been long rejected by certain medical, religious and palliative care practitioners and organisations, on the grounds that killing patients amounts to murder, or that VAD runs counter to the healing/palliating ethos of medicine, or that it will be abused. But these positions have increasingly lost credibility, in the face of various arguments to the contrary, but more importantly public opinion and the experience of practice in jurisdictions where VAD has been allowed.

[9]

 

 

Doctors for Assisted Dying Choice contend that health practitioners including doctors should see their oaths, codes and principles (both personal and professional) as consistent with VAD. Doctors for Assisted Dying Choice see a great opportunity for Queensland to provide leadership by providing a model of end-of-life care in which VAD and palliative care are seen at least as compatible options, if not integral ones as is the case in Belgium.

[10]

[11]

This opportunity is supported by recent findings from research by the Apex Consulting Group for Palliative Care Australia:

[12]

 

An assessment of the palliative care sectors following the introduction of assisted dying for each of the in-scope jurisdictions provided no evidence to suggest that the palliative care sectors were adversely impacted by the introduction of the legislation. If anything, in jurisdictions where assisted dying is available, the palliative care sector has further advanced.

 

Where jurisdictional data is available, there are consistently high levels of patient involvement in palliative care services at the time of the death through assisted dying: 90.9% of Oregonians and 88.0% of patients in Washington State were enrolled in hospice care; and 70.9% of patients in Belgium (compared to 42.5% of those patients who died non-suddenly and who had not sought assisted dying).

 

Given that these findings are published by Palliative Care Australia, Doctors for Assisted Dying Choice urges the Inquiry, in relation to Q21 “How can the delivery of palliative care and end-of-life care services in Queensland be improved?”, to recommend the expansion of palliative care services and the enactment of VAD legislation as not only compatible but mutually reinforcing projects. In this regard, we bring to the committee’s notice the pledge by the Victorian government to spend $62M over five years to improve palliative care state-wide, in conjunction with enacting its VAD legislation. We urge the committee to recommend that the Queensland parliament undertakes a similar conjoint commitment to end-of-life care.

 

Doctors for Assisted Dying Choice also believes that there is a need for VAD in Queensland (in addition to the expansion of palliative care services) due to the following factors:

 

·        

lack of understanding and clarity concerning intentions about the relief of suffering;

·        

the unofficial practice of active assistance in dying and associated lack of uniformity, safeguards and oversight;

·        

the need for choice concerning different options such as terminal sedation and VAD, given that terminal sedation often involves a prolonged process of end-stage dying as against the speed and certainty of VAD, and that most people prefer to die at home, where terminal sedation is a less satisfactory and practical option;

·        

the vulnerability of patients to these deficiencies;

·        

the lack of legal certainty for patients, families and health professionals in relation to end-of-life practice.

 

Enacting a legislative regime in Queensland for VAD with appropriate procedures and safeguards would improve public and professional understanding of the complexities concerning intentions and accountability at the end of life, remove legal uncertainties for patients and health professionals, increase fairness of access to assisted dying, and reduce harms to patients from unofficial practices.

 

Definition of VAD

VAD is the process by which a competent patient requests and receives assistance to die at a time and in circumstances of their choosing, through the provision and/or administration of a substance by a doctor. The purpose and intention of administration of the substance is the ending the patient’s life, in order to relieve suffering that the patient deems to be intolerable. The patient must have been offered and had explained existing options for active medical treatment, and have rejected these. The patient’s request should be voluntary, ie fully informed, enduring but able to be withdrawn, and not made under duress.

 

 

 

Q28. If there is to be a VAD scheme, what features should it have?

 Q29. Are there aspects of VAD schemes in other jurisdictions that should, or should not, form part of any potential VAD scheme for Queensland, and why?

 Doctors for Assisted Dying Choice strongly support the broad themes, safeguards and processes which are embodied in Victoria’s Voluntary Assisted Dying Act 2017 (VADA17).[13] In responses to subsequent questions, we indicate specific positions, but here we state our broad commitments:

 We support the following features of the VADA17:

 ·         the meaning of decision-making capacity (s4).

·        

the broad principles concerning human rights in relation to medical treatment, the value of life, protection of choice and so on (s5).

·        

The broad structure of requests and access to VAD (s6).

·        

The assessment process, broadly speaking (Part 3) but see qualifications in next paragraph regarding s27:1 and s27:2 of the VADA17

·        

Parts 4 - 11 are more procedural and we make no specific comments here apart from generally endorsing the overall processes adopted by Victoria as thorough and providing appropriate safeguards and protections (note that ss75-78 from Part 7 are commented on below in connection with s8 from Part 1 on initiation of VAD discussion by health practitioners).

 

We differ from, or raise questions concerning, the following features of the VADA17:

·        

Initiation of VAD topic by health practitioners (s8 and ss75-78). 

o  

Doctors for Assisted Dying Choice understands Victoria’s restriction of health practitioners initiating VAD discussions with their patients, and making this (as well as the failure by a second practitioner to notify the Australian Health Practitioner Regulation Agency of the first practitioner’s behaviour in this regard), a matter of unprofessional conduct. The restriction is intended to prevent coercion or inadvertent pressure on patients by treating practitioners (almost always doctors).

[1  

o  

How to clinically implement this legal prohibition yet maintain meaningful end-of-life discussions with patients is far from clear.

[15]

Doctors for Assisted Dying Choice considers that this restriction should not be adopted in any VAD law that the Queensland parliament enacts, for the following reasons:

 

§ 

The intention of VAD legislation is to normalise the procedure as acceptable and lawful within the spectrum of end-of-life care, albeit for a relatively small proportion of patients.  

§ 

Rather than threaten the therapeutic relationship, the ability of doctors to initiate discussions would contribute to the continuity of the relationship by providing for informed deliberation by a sub-group of patients, whose personal and medical interests may best be met by VAD, but who are reluctant to initiate discussions, or who may not be aware of the VAD option.

[16]

§ 

The rules and processes regarding eligibility, access and implementation in VADA17, and that Queensland would also include in legislation, are more than sufficient to prohibit and prevent coercion of patients by treating doctors.

§ 

There is no equivalent proscription on the initiation by treating doctors of discussions concerning the withdrawal or withholding of treatment, including life-sustaining treatment, from patients, where the doctor considers that continuing treatment would be futile or harmful.

 

·        

Age eligibility for VAD and expected time of death from the condition (s9)

o  

see answers to relevant questions 31 & 32 below.

 

·        

Specialist assessment of capacity to consent and disease status

o  

We accept that in some cases, capacity to consent to VAD will need to be assessed by a health professional with special skills such as a psychiatrist (s27:1), and that in some cases, a specialist in a particular disease will need to assess a patient’s eligibility (s27:2). Nevertheless, Doctors for Assisted Dying Choice stresses that the following caveats should be observed in relation to these requirements.

 

§ 

Psychiatric consultation should be strictly limited to uncertainty concerning mental capacity, consistent with the longstanding recognition that legally, capacity is a procedural matter, independent of the content of the patient’s decision. Secondly, in the vast majority of cases, mental capacity will be assessable by the co-ordinating and consulting medical practitioners (terms used under the VADA17).

 

§ 

Consultation by disease specialists should also be limited to cases of uncertainty on the part of the co-ordinating and consulting medical practitioners. Of course, Queensland is a vast state in contrast to Victoria, and provisions must be made for appropriate access by patients to both co-ordinating and consulting medical practitioners, and specialists where required, which does not disadvantage patients in rural and remote areas. Queensland is well advanced in the area of e-consulting; existing services should be enlisted in the delivery of timely access. 

 

Further responses to Q28 & Q29 are included under the more specific Q30 - Q38 below.

 

Q30. Who should be eligible to access VAD and who should be excluded?

 

Q31. Should the scheme be limited to those aged 18 and over? If so, why? If not, why not?

 

Q32. Under what circumstances should a person be eligible to access VAD? Could it be for example, but not limited to, the diagnosis of a terminal illness, pain and suffering that a person considers unbearable or another reason?

 

 Doctors for Assisted Dying Choice supports a number of the eligibility criteria included in Victoria’s VADA17 as protecting patients and the integrity of the scheme, and preventing assisted dying “tourism”, but with some qualifications as follows:

 Eligibility for voluntary assisted dying in Queensland should require that the person -

·        

is an Australian citizen or permanent resident;

·        

is ordinarily resident in Queensland, and at the time of making a first request, have been ordinarily resident in Queensland for at least 12 months;

o  

To achieve fairness and reasonable flexibility, we would urge the committee to recommend a qualifying clause to the 12-month requirement along these lines: “… with allowance for compassionate relaxation in the event of terminal disease being diagnosed after onset of residency”.

·        

has decision-making capacity in relation to voluntary assisted dying;

o  

see note above regarding the assessment of capacity

·        

has been diagnosed with a disease, illness or medical condition that is incurable, advanced, progressive, will cause natural death that is reasonably foreseeable and predictable, and is causing physical, psychological or existential suffering to the person that cannot be relieved in a manner that the person considers tolerable.

o  

See discussions below regarding these modifications of the specified times until death and the exclusion of mental illness, as contained in VADA17.

·        

has made a request for voluntary assisted dying that is voluntary and enduring

Doctors for Assisted Dying Choice differs from or raises questions concerning the VADA17 eligibility criteria, as follows:

·        

age 18 threshold

o  

Doctors for Assisted Dying Choice supports the general restriction of VAD to competent, legal adults, ie those over the age of 18. 

o  

However, we also recognise that young people under 18 can also be afflicted with incurable conditions that will lead to death, that they can have decision-making capacity, and that some other jurisdictions allow assisted dying for such people.

o  

We therefore urge the committee to recommend that there be allowance for compassionate, special case exemptions to the 18 year rule for terminal conditions, as long as the young person has decision-making capacity and that the young person’s parent(s) or guardian(s) also consent to VAD.

 

o  

In the event that there is a dispute between the young person and parent and guardian, we support the right of young people to have their VAD request judged in the relevant court.

 

·        

expected time of death as a result of disease/condition

o  

VADA17 requires that the disease/condition must be expected to cause death within 6 months, or 12 months for neurodegenerative diseases (eg motor neurone disease, Parkinson’s disease). 

o  

Doctors for Assisted Dying Choice argues that these limits are too restrictive. Predicting survival time is a notoriously uncertain medical skill, and there is evidence that accuracy rates are low.

[17]

As death approaches, prognosis becomes easier and more accurate. However this implies that people who cannot reasonably be predicted to die within 6 months but who nevertheless are suffering intolerably are excluded from assistance. Specific time to death clauses may also invite unreasonable legal challenges to the validity of approved requests. We consider that these grounds may underpin the unfair treatment of a sub-group of patients.

o  

We recommend that in relation to expected time of death, VAD legislation in Queensland should require that the timing/prognosis of death of otherwise eligible patients should be defined as “reasonably foreseeable and predictable” – or words to that effect – for them to quality for assistance.    

 

·        

exclusion of mental illness

o  

Doctors for Assisted Dying Choice understands that mental illness is a controversial justification for VAD, and that VADA17 excluded patients from eligibility for VAD “only because the person is diagnosed with a mental illness” (and also patients “only because the person has a disability”), in part to protect people seen as vulnerable and to help ensure passage of the legislation.

o  

Nevertheless, Doctors for Assisted Dying Choice points out that justice as fairness would require the inclusion in VAD eligibility of certain patients with “only” psychiatric conditions, given that while the nature of their suffering is different from a person with, say, terminal cancer, the continuing intolerability of their suffering is in no less doubt.

[18]

o  

It is well accepted that the existence of mental illness or disability does not imply that the patient lacks decision-making capacity; indeed many patients with even severe mental illnesses retain capacity.

o  

One reason sometimes advanced to justify excluding patients with mental illness from VAD is that one can never be certain that a mentally ill patient will never get better, or at least go into remission. However, probability of outcome is far more commonly and justifiably the standard against which medical prognosis is measured, and patients with recalcitrant depression who retain decision-making capacity can be discriminated against if excluded from access to VAD under cover of ostensible protection from vulnerability.

[19]

o  

Doctors for Assisted Dying Choice recommends that Queensland has the opportunity to extend the benefits of VAD to its citizens in an equitable way, as long as patients with mental illness or disability

[20]

who conform to all eligibility criteria are treated similarly. The committee should recommend that mental illness and disability be included in the disease/condition eligibility criteria, but subject to specialist consultation regarding diagnosis, resistance to treatment, and the existence of unremitting and unacceptable suffering until natural death. Should the committee not make this recommendation, it should recommend that the issue remain the subject of further exploration and consideration by relevant bodies.

[21]

        

 

·        

People with dementia and lacking contemporaneous decision-making capacity

o  

As noted in the committee’s Issues Paper, some jurisdictions such as the Netherlands allow for euthanasia even in the absence of contemporaneous capacity, under the terms of a valid advance health directive, completed when the person had capacity and expressed the desire to be assisted to die under particular future circumstances, primarily the advent of advanced dementia.

 

o  

Many other jurisdictions do not make this provision, but there will be increasing public pressure brought to bear on governments for its introduction. Dementia is now the second most frequent cause of death in Australia, and the leading cause of death for women.

[22]

 

o  

In response to overwhelming public opinion and the looming escalation in the incidence of dementia in Queensland, Doctors for Assisted Dying Choice urges the committee to pay special attention to this issue, and its implications. These would include the necessity to modify any proposed restrictive time limits on foreseeable time to death and the need to provide for specially crafted advance health directives to facilitate VAD for patients with dementia. Queensland was an early Australian leader in developing advance health directives of high quality, and they are an integral aspect of advance care planning. Although not taken up at a high rate in absolute terms, Queensland also leads in the relative uptake of advance health directives across Australia. Options the committee should consider are the recommendation that the matter of facilitating VAD for people with dementia could be given attention by the Queensland Law Reform Commission, or be the subject of a separate Queensland parliamentary inquiry, if they are not incorporated in the initial VAD legislation that we hope the parliament enacts.

 

o  

Doctors for Assisted Dying Choice agrees in principle that an enlightened and equitable policy would facilitate the provision of “Advance health directive VAD” for patients with dementia, but at the same time recognises that robust procedures and safeguards would be required to regulate it.

 

 

 Q33. What features should be included in a process to allow a person to legally access VAD?

Doctors for Assisted Dying Choice endorses the approach and the structure of the VADA17 regarding requests for access to voluntary assisted dying, the assessment and documentation relating to requests, protections from liability for those who participate (or do not if they so choose), and review mechanisms (in Victoria the VCAT and the Voluntary Assisted Dying Review Board). These provisions are contained in Parts 3-9 of the Act.

Doctors for Assisted Dying Choice also endorses the central roles of doctors in the assessment, documentation and implementation aspects of the process of delivering VAD to eligible patients. These tasks must necessarily be carried out by doctors due to their existing expertise in assessment of decision-making capacity, diagnosis of diseases, prognosticating in relation to serious and/or terminal disease, counselling of patients and provision and/or administration of relevant drugs. But these important medical tasks are underpinned by the core principles informing this submission:

·        

Medicine and health care serve the public who strongly desire the availability of VAD.

·        

VAD is consistent with the principles of medical ethics.

·        

Doctors’ participation in VAD reflects deep and continuous care for patients.

The existence and activity of Doctors for Assisted Dying Choice reflects the increasing acceptance amongst doctors that VAD should and will become an integral part of good end-of-life care in Queensland and the other states and territories.

 

 34. What safeguards would be required to protect vulnerable people from being coerced into accessing such a scheme, and why?

The VADA17 has been described as the most conservative assisted dying regime in the world, due to the impeccable processes of professional, community and political engagement that led to its enactment, its rigorous drafting including its many safeguards, and the training and communication activities that are occurring in relation to implementation

Doctors for Assisted Dying Choice endorses the Victorian Act’s numerous safeguards, with the exceptions or caveats that we have supported in this submission.

We urge the committee to recommend a similar regime of safeguards to that in Victoria (subject to those modifications), including

·        

Application of eligibility criteria;

·        

Qualifications of participating medical practitioners;

·        

Two independent medical assessments of requests for VAD, together with appropriate documentation, structured along the lines adopted in Victoria;

·        

A rigorous authorisation procedure in response to requests for VAD;

·        

A rigorous process governing the prescribing, dispensing and disposing of VAD substances;

·        

Transparent, efficient and rigorous review mechanisms, which in the case of Queensland would reside with an equivalent body to Victoria’s VAD Review Board, and with QCAT;

·        

Protections from legal liability of participants;

·        

The various documentation and reporting obligations related to all stages of the VAD process.

In addition to these safeguards that are contained in the VADA17, Doctors for Assisted Dying Choice strongly recommends that a rigorous training course for doctors who would be involved in VAD in Queensland be established and completed by participants prior to implementation of legislation. Victoria has required the establishment of such training, and there will therefore be a good model available for Queensland to utilise in its particular settings.

While Doctors for Assisted Dying Choice has emphasised that doctors are central to any legislative regime due to their existing skills and attributes, new regimes such as Victoria’s VAD scheme and the scheme that we support for introduction in Queensland clearly require familiarity of its central providers with the legal, administrative, medical and pharmaceutical aspects of a new arrangement.

[23]

 Doctors for Assisted Dying Choice also strongly urges the committee to recommend a comprehensive public education campaign which would support the introduction of a new VAD regime in Queensland. A change of government interfered with the planned public education campaign that would have properly supported the introduction to Queensland of advance health directives and related instruments in the 1990s. This was likely to have impeded the appreciation and rate of uptake of the new arrangements. Consideration should therefore be given by the committee for recommending that the requirement for a planned public education campaign for VAD should be included in legislation, to avoid this risk.

 

35. Should people be provided access to counselling services if they are considering VAD? If so, should such counselling be compulsory? Why?

Doctors for Assisted Dying Choice considers that the best counselling for patients in relation to VAD will be that which occurs within the therapeutic relationship with their regular doctor. This will already exist for most patients, and in many cases the regular doctor would take on the role of the first assessing doctor. (Note that we have argued that the proscription of doctors initiating discussions about VAD not be included in a Queensland scheme).

However, not all requests for VAD would be made in this typical context. Consideration should be given for the establishment of counselling services within existing structures, for example as a new service within Queensland Health.

That said, Doctors for Assisted Dying Choice does not consider that counselling should be compulsory for people considering VAD, at least in the sense of special arrangements conducted beyond the doctor-patient relationship.

While not responsible for counselling per se, Victoria has established a system of liaison officers who will be responsible for helping participants – patients, doctors, pharmacists and so on – to make links with others in the system. Given that Queensland is nearly 8 times the size of Victoria, with considerable decentralisation of population and services, and given the ageing of the population, counselling and liaison services would need special planning and appropriate fun

 

 

36. How could a VAD scheme be designed to minimise the suffering and distress of a person and their loved ones?

Doctors for Assisted Dying Choice considers that the kind of scheme enacted in Victoria with its rigorous processes and safeguards, and supported in this submission albeit with various caveats and variations, will minimise patient suffering and distress. The main way of serving this purpose of course is the central aim and core process of any such legislation - to allow people who are suffering intolerably to have that suffering relieved, including via VAD where that is appropriate. This relief is shared by relatives and friends of the people involved, as their desires are met.

Subsidiary but crucial means of minimising suffering and distress of patients and their families and friends include

·        

Maximising information sharing and knowledge concerning patients’ and other participants’ rights within the VAD scheme;

·        

Minimising delays and waiting periods for patients who request and qualify for VAD (this should be mandated by legislation but also achieved through efficiency of delivery and associated processes);

·        

Maximising transparency of the requirements and processes for all participants under the scheme;

·        

Optimising the special knowledge, skills and attitudes of professional participants such as doctors, pharmacists, hospital and other administrators via appropriate training and preparation for the scheme;

·        

Ensuring appropriate follow-up for families and others after VAD occurs.

 

 37. Should medical practitioners be allowed to hold a conscientious objection against VAD? If so, why? If not, why not?

 

38. If practitioners hold a conscientious objection to VAD, should they be legally required to refer a patient to a practitioner that they know does not hold a conscientious objection or to a service provider that offer such a service? If so, why? If not, why not? 

Despite increasingly strong public and professional support for VAD over recent decades, some people continue in good faith to object to its legalisation, including some doctors and other health professionals. They see professional integrity and conscience as crucial values within medicine and health care.

[24]

However, Doctors for Assisted Dying Choice argues that under any VAD scheme, equal access must be assured for all eligible patients, and that it is unprofessional to impede a patient’s access to a lawful health service. Some commentators argue that in order for this to occur, referring a patient elsewhere in these circumstances ought to be a legal requirement.

[25]

 

The Medical Board of Australia in its Code of Conduct for Doctors in Australia is non-prescriptive regarding referrals to colleagues.

[26]

However, the Australian Medical Association’s Code of Ethics states that doctors should “Obtain the opinion of an appropriate colleague acceptable to the patient if diagnosis or treatment is difficult or in response to a reasonable request by the patient”.

[27]

While not intended to govern VAD specifically, it should be noted that this guideline is compatible with a referral requirement in relation to VAD.

 

Queensland has a decentralised population, in some cases occupying very remote geographical locations that are relatively poorly provided with health services. While it might be argued that in urban areas, access to VAD does not require the proscription of conscientious objection to referral, Doctors for Assisted Dying Choice recommends that Queensland would be best served by including the requirement that objecting doctors refer requesting patients to non-objecting ones, in order to assure access to VAD for all eligible patients. The requirement would also have the effect of ensuring that institutions such as nursing homes, hospices and hospitals whose caring ethos precludes VAD, do not evade via commission or omission their responsibility to facilitate their patients’ access to lawful health services.

 

 

Recommendations

 

Q25. Should voluntary assisted dying (VAD) be allowed in Queensland? Why/why not?

 

VAD should be legalised in Queensland, to form an integral component of end-of-life care. Palliative care benefits from the introduction of VAD, and Queensland should lead the development of VAD and palliative care as complementary approaches.

 

Q26. How should VAD be defined in Queensland? What should the definition include or exclude?

 

VAD is the process by which a competent patient requests and receives assistance to die at a time and in circumstances of their choosing, through the provision and/or administration of a substance by a doctor. The purpose and intention of administration of the substance is the ending the patient’s life, in order to relieve suffering that the patient deems to be intolerable. The patient must have been offered and had explained existing options for active medical treatment, and have rejected these. The patient’s request should be voluntary, ie fully informed, enduring but able to be withdrawn, and not made under duress.

 

Q27. If you are a health practitioner, what are your views on having a scheme in Queensland to allow VAD?

 

VAD is consistent with the core principles of professional medical and health care ethics, and in appropriate cases is a final compassionate step in the continuity of care. Doctors and other health practitioners should be centrally involved in the development and implementation of VAD in Queensland.

 

Q28. If there is to be a VAD scheme, what features should it have?

Q29. Are there aspects of VAD schemes in other jurisdictions that should, or should not, form part of any potential VAD scheme for Queensland, and why?

 

Queensland should model VAD legislation on the broad structure and processes of Victoria’s Voluntary Assisted Dying Act 2017, with the following exceptions (see also responses to Q30-Q38):

·        

No restriction on initiating discussions about VAD in appropriate circumstances should be imposed on treating health practitioners.

·        

Specialist referral for assessment of decision-making capacity and disease status should not be routine, but restricted to cases where coordinating and consulting doctors are genuinely uncertain regarding capacity or diagnosis.

 

 

Q30. Who should be eligible to access VAD and who should be excluded?

Q31. Should the scheme be limited to those aged 18 and over? If so, why? If not, why not?

Q32. Under what circumstances should a person be eligible to access VAD? Could it be for example, but not limited to, the diagnosis of a terminal illness, pain and suffering that a person considers unbearable or another reason?

 

Queensland should legislate for VAD with the following eligibility criteria:

The person

·        

is an Australian citizen or permanent resident, ordinarily resident in Queensland for at least 12 months at the time of request, with relaxation in the event of a terminal disease being diagnosed after onset of residency;

·        

has decision-making capacity in relation to voluntary assisted dying;

·        

has been diagnosed with a disease, illness or medical condition that is incurable, advanced, progressive, will cause natural death that is reasonably foreseeable and predictable, and is causing physical, psychological or existential suffering to the person that cannot be relieved in a manner that the person considers tolerable;

·        

is 18 years old, or in cases of terminal conditions under 18 has decision-making capacity and where the request/consent to VAD is supported by the young person’s parent(s) or guardian(s).

 

The committee should recommend the inclusion of dementia as an eligibility criterion in VAD legislation. If this does not occur, the committee should recommend that this issue be further investigated by relevant bodies.

 

Q33. What features should be included in a process to allow a person to legally access VAD?

 

VAD legislation in Queensland should follow the model adopted in Victoria in relation to requests for voluntary assisted dying and associated assessment and documentation, protections from liability for participants, and review processes.

 

Review should be managed by an equivalent body to Victoria’s Voluntary Assisted Dying Review Board and by QCAT.

 

Doctors should be central participants in assessment, documentation and delivery of VAD, due to their comprehensive expertise.

 

 34. What safeguards would be required to protect vulnerable people from being coerced into accessing such a scheme, and why?

 

Queensland should legislate for VAD in Queensland to include similar safeguards to those in Victoria, as qualified in this submission:

 

·        

Application of eligibility criteria

·        

Qualification requirements of participating medical practitioners

·        

Two independent medical assessments of requests for VAD

·        

Rigorous procedure to authorise VAD requests

·        

Rigorous governance of prescribing, dispensing and disposing of VAD substances

·        

Transparent review mechanisms

·        

Protections from liability of participants

·        

Documentation and reporting at all stages

 

Additional provisions should include

·        

Rigorous training for doctors to be completed prior to implementation of legislation, including familiarity with legal, administrative, medical and pharmaceutical aspects

·        

Comprehensive public education campaign to support the introduction of VAD in Queensland

·        

Inclusion of these additional requirements in legislation.

 

35. Should people be provided access to counselling services if they are considering VAD? If so, should such counselling be compulsory? Why?

 

Counselling should occur primarily within the therapeutic relationship with the patient’s regular doctor.

 

The establishment of specific VAD counselling services should be considered as a new service within Queensland Health. A system of liaison officers similar to Victoria’s system should be established. Both services require appropriate planning and funding.

 

Counselling beyond the doctor-patient relationship should not be compulsory for people considering VAD.

 

36. How could a VAD scheme be designed to minimise the suffering and distress of a person and their loved ones?

 

Minimising suffering and distress will be primarily achieved by the introduction of VAD legislation in Queensland.

 

It will further require

 

·        

Maximising information sharing about patients’ and other participants’ rights under the scheme and within other processes that intersect with the scheme

·        

Minimising delays for patients who request VAD

·        

Ensuring transparency of the requirements and processes for all participants

·        

Optimising the special knowledge, skills and attitudes of professional participants via appropriate training

·        

Ensuring appropriate follow-up for families and others after VAD occurs

 

 

37. Should medical practitioners be allowed to hold a conscientious objection against VAD? If so, why? If not, why not?

38. If practitioners hold a conscientious objection to VAD, should they be legally required to refer a patient to a practitioner that they know does not hold a conscientious objection or to a service provider that offer such a service? If so, why? If not, why not?

 

Equal access must be assured for all eligible patients; it is unprofessional to impede a patient’s access to a lawful health service.

 

A VAD scheme in Queensland should include the requirement that objecting doctors and health care institutions refer requesting patients to others willing to participate.

 

Appendix 1

 

Author details

 

Sid Finnigan is a recently retired Ophthalmic Surgeon with subspecialty interest in Ocular Oncology, having previously spent four years in Queensland Country Hospital Service followed by ten years in General Practice prior to specialist ophthalmic training.

 

Malcolm Parker is Emeritus Professor of Medical Ethics at the UQ and Adjunct Professor at the Australian Centre for Health Law Research at QUT. He was in general medical practice for over thirty years. He has published widely in medical education, philosophy of medicine, medical ethics and law and bioethics, including end-of-life ethics and law.

 

Heather McNamee is a GP in regional Queensland with special interests in reproductive health, adolescent and HIV medicine and telehealth. She has prior experience in paediatrics including paediatric oncology.

 

Jenny Brown is a specialist physician in internal medicine with over 30 years’ experience. She set up the palliative care service at Mater Health Services Brisbane, where she was Director of Medicine and Chief of Medical Staff. Dr Brown was previously Clinical Associate Professor of Medicine at UQ, training many medical students and junior staff, and was an examiner for the Royal Australasian College of Physicians. 

 

Peta Higgs is a Subspecialist Urogynaecologist in private and public practice on the Sunshine Coast.  She is the immediate past Chair of the Urogynaecology Subcommittee for RANZCOG and an examiner in Urogynaecology.

 

Peter Stephenson has been a family doctor since 1977 in the Moreton Bay Region, Queensland.


 

[1]

See Appendix 1 for further details

[2]

The views expressed in this submission do not reflect the views or position of the University of Queensland.

[3]

See for example R Magnusson. Angels of Death: Exploring the Euthanasia Underground. 2002. Melbourne. Melbourne University Press.

[4]

R Syme. Time To Die. 2016. Melbourne. Melbourne University Press. 16-29.

[5]

Newgate Research. State of the (Older) Nation 2018. A nationally representative survey prepared for the COTA Federation (Councils on the Ageing). December 2018. p73. https://www.cota.org.au/wp-content/uploads/2018/12/COTA-State-of-the-Older-Nation-Report-2018-FINAL-Online.pdf. Accessed 20 March 2019.

[6]

ReachTEL research 29 August 2018. Commissioned by the Clem Jones Group. Communication from Clem Jones Group 20 March 2019.

[7]

For example, the World Medical Association in its Declaration of Geneva, states as part of its Physician’s Pledge “I will respect the autonomy and dignity of my patient”. https://www.wma.net/policies-post/wma-declaration-of-geneva/. Accessed 20 March 2019.

[8]

Australian Medical Students’ Association. Policy Document. Voluntary Assisted Dying. https://www.amsa.org.au/sites/amsa.org.au/files/Voluntary%20Assisted%20Dying%20%282018%29.pdf. Accessed 20 March 2019. 

[9]

L Ganzini et al. Physicians' Experiences with the Oregon Death with Dignity Act. (2000). N Engl J Med 342: 557-563.

[10]

S Dierickx, L Deliens, J Cohen, and K Chambaere. Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: A population-based mortality follow-back study. (2018). Palliative Medicine 32(1): 114–122.

[11]

Bernheim J, Raus K. Euthanasia embedded in palliative care. Responses to essentialistic criticisms of the Belgian model of integral end-of-life care” (2017). Journal of Medical Ethics 43: 489-494.

[12]

Palliative Care Australia. Experience internationally of the legalisation of assisted dying on the palliative care sector. Final Report. 28 October 2018. p5. https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2018/12/Experience-internationally-of-the-legalisation-of-assisted-dying-on-the-palliative-care-sector-APEX-FINAL.pdf. Accessed 21 March 2019.

 

[14]

Ministerial Advisory Panel on Voluntary Assisted Dying. Final Report. p15. file:///C:/Users/mfmparke/Downloads/ministerial-advisory-panel-on-voluntary-assisted-dying-final-report-pdf.pdf. Accessed 21 March 2019.

[15]

B White, L Willmott & E Close. Victoria’s voluntary assisted dying law: clinical implementation as the next challenge. (2019) Med J Australia 210 (5): 207-209.

[16]

C Johnston and J Cameron. Discussing Voluntary Assisted Dying. (2018) J Law & Med 26: 454-463.

[17]

Hølmebakk T. Clinical prediction of survival by surgeons for patients with incurable abdominal malignancy. (2011) Eur J Surg Oncol 37(7): 571-5.

 

[18]

M. Parker. Defending the indefensible: psychiatry, assisted suicide and human freedom. (2013) International Journal of Law and Psychiatry 36: 485-497.

[19]

U Schuklenk. Certainty is not a morally defensible threshold to determine eligibility for assisted dying. (2019) Bioethics 33: 219-220.

[20]

Australian Human Rights Commission. Euthanasia, human rights and the law. pp 32-35. https://www.humanrights.gov.au/our-work/age-discrimination/publications/euthanasia-human-rights-and-law. Accessed 24 March 2019.

[21]

C Schaffer, A Cook and D Connolly. A Conceptual Framework for Thinking About Physician-Assisted Death for Persons with a Mental Disorder. (2016) Psychology, Public Policy and Law 22(2): 141-157.

[22]

Dementia Australia. Dementia Statistics. Key Facts and Statistics: Updated September 2018. https://www.dementia.org.au/statistics. Accessed 26 March 2019.

[23]

See for example Health Victoria. Voluntary Assisted Dying training for medical practitioners. https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/voluntary-assisted-dying/health-practitioners/vad-training-for-medical-practitioners. Accessed 4 April 2019.

[24]

Cowley C. A Defence of Conscientious Objection in Medicine: A Reply to Schuklenk and Savulescu.

(2016) Bioethics 30: 358-364.

 

[25]

U Schuklenk. Conscientious Objection in Medicine. (2015) Bioethics 29(5) pp ii-iii.

[26]

Medical Board of Australia. Good Medical Practice. A Code of Conduct for Doctors in Australia. March 2014. file:///C:/Users/mfmparke/Downloads/Medical-Board---Code-of-conduct%20(5).PDF. Accessed 26 March 2019.

 

[27] Australian Medical Association. Code of Ethics. Revised 2016. https://ama.com.au/system/tdf/documents/AMA%20Code%20of%20Ethics%202004.%20Editorially%20Revised%202006.%20Revised%202016.pdf?file=1&type=node&id=46014. Accessed 26 March 2019.............................................................................................................................................................................................................

 

Doctors for Assisted Dying Choice

 

 

[email protected]                                            http://drs4assisteddyingchoice.org/


17 September 2018

 

Title Firstname Surname MP/MLC

Job title

Address Postcode

 

Dear ………

Doctors for Assisted dying Choice is a National group of medical practitioners who believe that rational adults with intolerable suffering and no realistic chance of cure or relief,should have the right to legal assisted dying at a time of their choosing and in the company of those whom they choose. We believe it is regrettable that a State that has, in the past, been at the forefront of progressive social legislative change, has now fallen behind other States and Territories, in this area.

South Australia has been a pioneer in legislate attempts to introduce well safeguarded assisted dying legislation to allow relief for a person with unbearable and intolerable suffering, which cannot be relieved by any other means.  Since 1995, fifteen bills  have been introduced into the South Australian Parliament. 

In May 2015 the Victorian Government undertook an Inquiry into End of Life Choices which resulted in a Report which was tabled on 9th June 2016.  The Report covered many aspects of end of life, including a recommendation that the Victorian Parliament should enact a Voluntary Assisted Dying Bill.  A government sponsored  Bill was created and debated extensively, in both Houses of the Victorian Parliament.  It was passed on 29 November 2017and became the Voluntary Assisted Dying Act 2017.  An Implementation Committee is now underway.  The Act will be implemented in June 2019.

 In 2017 the West Australian Parliament established a Joint Select Committee of the Legislative Assembly and Legislative Council to inquire and report on the need for laws in Western Australia to allow citizens to make informed decisions regarding their own end of life choices,

 

The Report was tabled on 23 August 2018.  It made wide recommendations on end of life and  concluded “… that the current lawful options available to people experiencing grievous and irremediable suffering at end of life are inadequate, and can be exceptionally difficult for the dying person and for their family and friends” (Chair’s Foreword).  It further stated “Unnecessary suffering at end of life, and broad community agreement regarding individual autonomy, form the basis for the Committee’s recommendation that the Western Australian Government draft and introduce a Bill for Voluntary Assisted Dying” (Chair’s Foreword).  There is considerable support within Parliament for this to be processed.

 

On 30 November 2017, the Australian Capital Territory Legislative Assembly established aSelect Committee on End of Life Choices in the ACT, to review and report on end of life choices in the ACT.  The Committee’s Terms of Reference included “current practices utilised in the medical community to assist a person to exercise their preference in managing the end of their life, including palliative care” and “ACT community views on the desirability of voluntary assisted dying being legislated in the ACT”.

The Committee has received submissions and conducted extensive Interviews

In Queensland on 2 September this year, at a Labor Party Conference in Brisbane, the Premier Annastacia Palaszczuk announced that she has ordered an Inquiry into End of Life Care. The Parliamentary Health Committee will lead the examination.  Aged care, palliative care and voluntary euthanasia will be considered.

With this decision Queensland has moved from being the only State not to have considered an assisted dying bill to be one of the progressive States actively responding to the views of its citizens.

 These activities throughout Australia lead to the question - Must the residents of South Australia continue be denied the opportunity to express to their Parliamentary representatives, their opinions on the role of assisted dying, or can they be treated with the equality of other States and the ACT?

 We ask that an inquiry into end of life choices for South Australians be expedited so that South Australians may receive the courtesy extended elsewhere, in Australia.

Yours sincerely

 

South Australian State Convenor Group

Associate Professor Arnold Gillespie MB BS BSc FRCOG FRANZCOG

Dr Rosemary Jones MB, ChB, FRCOG, FRANZCOG

Dr Carolyn Lawlor-Smith BM BS, FRACGP

Emeritus Professor John Willoughby MBBS, PhD, FRACP


 

Submission to

 The Select Committee on End of Life Choices in the ACT

ACT Legislative Assembly

Inquiry on End of Life Choices in the ACT

 

February 2018

...................................................................................................................................................................................................................................



Doctors for Assisted Dying Choice

 

http://drs4assisteddyingchoice.org                                                                    [email protected]

 

Submission to The Select Committee on End of Life Choices in the ACT

ACT Legislative Assembly

Inquiry on End of Life Choices in the ACT

 

Preamble

Doctors for Assisted Dying Choice (http://drs4assisteddyingchoice.org) is a National Organisation of Australian medical practitioners, in current practice or retired, who are committed to attaining a legal choice for rational adults, who for reasons of intolerable suffering with no realistic chance of cure or relief, wish to gently end their lives, at a time of their choosing, in the company of those whom they choose.

 To achieve our broad aim, we seek to strengthen societal and political recognition of the need for voluntary assisted dying, in Australia.  We do so by providing evidence that the practice of voluntary assisted dying can be ethical, is actively sought by patients in Australia and is acceptable to Australians.

 

Term of Reference 1

Current practices utilised in the medical community to assist a person to exercise their preference in managing the end of their life, includingpalliative care.       

 The process of life and death

 While it is inevitable that all persons will die, in Australia the age at death has progressively increased in the past century. The median age at death is 78.5 years for males and 84.8 years for females; sixty-six per cent of deaths registered in Australia in 2014 occurred in people aged 75 or over.[1] 

There is now more time for chronic illnesses to occur. 

 The patters of illness leading up to death vary. Typical patterns are illustrated in Figure 1.[2]

 

Typical patterns before death.

 

                                

 

 

 

 

 

 

 

The graphic was not transferred

from the original document

                                         

 

Trajectory A

Short period of

evident decline

Mostly cancer

 

 

 

Trajectory B

Long-term limitation

with intermittent

serious episodes

Mostly heart & lung failure

 

 

 

 

Trajectory C

Prolonged decline

Mostly frailty and dementia

 

Figure 1.  Patterns of illness leading to death. (2)

 People with cancer typically experience the pattern shown in Trajectory A.  A relatively short onset with a rapid decline towards death.  In others, a slower progress of life is punctuated by intermittent illnesses preceding death.  People who are frail or have dementia have a long period of poor health before death.

 

The end of life - general preferences 

A few in the community may believe that there is value in suffering before death; the majority however, although they may not fear death, as it is inevitable, do fear pain and suffering; however, what most people eventually find intolerable is existential suffering.  Evidence from Oregon, which has had voluntary assisted dying for almost twenty years, clearly shows that it is existential suffering, such as not being able to engage in activities that make life enjoyable, losing autonomy and loss of dignity, that are the predominant sufferings from which relief by assisted dying is requested.  Inadequate pain control or concerns about it, is a fear for only 25 %.[3]

 A good death

 A 2014 Report by the Grattan Institute,[4] quoting Richard Smith, the then Editor of the British Medical Journal, defined the characteristics of a Good Death:[5]

To know when death is coming and to understand what can be expected

To be able to retain control of what happens

To be afforded dignity and privacy

To have control over pain relief and other symptom control

To have choice and control over where death occurs (at home or elsewhere)

To have access to information and expertise of whatever kind is necessary

To have access to any spiritual or emotional support required

To have access to hospice care in any location including home, not only in hospital

To have control over who is present and who shares the end

To be able to issue advance directives that ensure wishes are respected

To have time to say goodbye and control over other aspects of timing

To be able to leave when it is time to go and not to have life prolonged pointlessly

 Do the practices utilised in the medical community assist a person to exercise their preferences in managing the end of their life and achieve a good death?

 The above characteristics of a good death provide a basis to consider the current practices utilised in the medical community to assist a person to exercise their preferences in managing the end of their life.

 The characteristics of a good death  

Although listed separately above it is convenient for discussion to consider some characteristics separately and to group others as they are interrelated and not mutually exclusive.

To know when death is coming and to understand what can be expected

To have access to information and expertise of whatever kind is necessary

Even though the expected time of death may be known, it is by no means certain that people may understand what to expect or to receive information and expertise to facilitate understanding.  During the slow process downhill, as in Trajectory B, patients do not usually initiate discussion about end of life care.  Indeed, there is a reticence in the community in general, to discuss death and dying.  Euphemisms such as “passing away” and “shuffling off” are used.  Similarly, it would be unusual in medical practice for discussion of end of life and care to be incorporated in management at this stage.  Early initiation of such discussion by the medical community may be seen as threatening and as abandoning the patient. Management is directed towards dealing with the intermittent, acute illnesses and control of symptoms associated with progressive disorders related to age.  Emphasis is on management of the conditions with assistance to achieve an independent existence and maintain living, within the limitations determined by the illness; death is not usually considered.

An acute event (Trajectory A), such as a cancer diagnosis, may bring forward the necessity to discuss death but even then, both the patient and the medical practitioner may focus more on hopes for the next medical breakthrough, rather than on the limits of health care when death is near.

The consequence of these attitudes is that most people get detailed information about end-of-life services only when they experience the process as a patient or a relative or friend of a dying patient.  It is only then that thoughts about death come to the forefront.[6]

When, after extensive attempts to cure the illness or counter its effects have failed, discussion becomes inevitable.  Management is then likely to involve palliative care.  Often it would have been desirable to involve palliative care earlier in the progress of the illness but palliative care is usually seen as an end of life process; its involvement requires acceptance by patient, doctor and relatives that the end of life is near.

 To be able to retain control of what happens

To be afforded dignity and privacy

 Death is an increasingly institutionalised and medicalised experience.[7] Admission to hospital usually means a loss of control of what happens.  Hospital routines may take precedence over personal preferences.  Attention to personal needs, even by compassionate hospital staff, may decrease personal dignity and privacy.

 To have control over pain relief and other symptom control

These desired characteristics may not always be achieved.  A multi-disciplinary approach of palliative care physicians, palliative care nurses, the medical community and carers, may be required but even then, control of the many symptoms that may occur near the end of life is not always achievable. 

The Final Report of End of Life Choices, Legal and Social Issues Committee, Parliament of Victoria highlighted many of the problems, in that State.  Although not specific to the ACT, it is reasonable to assume that a similar situation exists it the ACT.  The reader is referred to Chapters 2 and 3 in the Final Report for details.[8]

Some quotes from the Report will highlight the situation:

 “The evidence that the Committee heard on palliative care generally dealt with our ageing population which is resulting in an increased demand on palliative care…”

 “…increased demand in recent times, caused by an ageing population and changing disease profiles, has put a strain on the system”

 "Community palliative care services currently lack the capacity to sufficiently and effectively care for patients in their place of choice

“Palliative care provision is fragmented between services and at times poorly integrated with the rest of the health system”

Further compelling evidence is provided by two books, The Damage Done[9], from Go Gentle Australia and Dying Badly – New Zealand Stories,[10] from End-of-Life Choices Society of New Zealand.  Each provides testimonies of relatives of people who died after prolonged periods of suffering and wretchedness, which could not be satisfactorily relieved.

To have choice and control over where death occurs (at home or elsewhere)

Death is an increasingly institutionalised and medicalised experience.[11]

Most people (70%) would prefer to die at home. Few favor a hospital death (19%), with lower preference rates for hospice (10%) and nursing home (<1%).[12]  In practice these preferences are not achieved.  In Australia, only 30% of people 65 and over die at home and many are eventually hospitalised; in comparable countries including New Zealand, the United States, Ireland and France the numbers dying at home are about double the Australian rate.[13]  This occurs because people become progressively dependent; their carers, who are family and friends, cannot cope and there is no formal home care help available.

In Oregon, which has had assisted dying for nearly twenty years, most (90.1%) patients die at home.[14]

Despite widespread assumptions about the cost of end-of-life care, in Australia only about $5 billion a year is spent on the last year of life for older people in a health budget of $100 billion. But only about $100 million is spent on helping people to die at home. A change in focus will not save much, but will help more people to die well.[15] 

 To have control over who is present and who shares the end

With the high percentage of deaths in Australia occurring in hospitals it is not always possible to have control over whom is preset and who shares the end.  The time of death may be preceded by a prolonged period of days or weeks, which may preclude the continued presence of those chosen or desired. 

Assisted dying however, provides the opportunity to reliably decide on the time of death. It can be planned and accomplished quickly, in the presence of loved ones, after all goodbyes have been said.

At the present time, in the ACT this option of out-front, legal assisted dying cannot be undertaken.  What can happen is that the covert process of the administration of heavy doses of drugs is undertaken on the stated intention of relieving suffering. 

The numbers of times this is used in the ACT is unknown; it is not reported and not recorded.  The availability to a patient is determined by the willingness of the doctor to provide it and the situation in which the patient is living.

 To be able to issue advance directives that ensure wishes are respected

 Legislation of advance care planning is well established in the ACT.  Details are available on the ACT Health website.[16] Three ways of recording decisions are provided, with access to the appropriate forms.  Persons may choose (quote):

An Enduring Power of Attorney.

This is a legal document that gives trusted decision maker/s, the legal authority to act for a person, and to make legally binding decisions on their behalf.

 An Advance Care Statement

This focusses on a person’s wishes and choices for healthcare into the future. It provides the chosen decision maker/s and doctors with information for treatment if a person is no longer able to make decisions.

 An Advance Care Plan (ACP) Statement of Choices.

This allows a person to legally record their future healthcare decisions, including refusal of medical treatment generally, or to withhold or withdraw treatment of a particular kind.

The problem with advance care planning in the ACT, as in all Australia, is not availability but the inaction of persons in discussing these options and the indolence in failing to complete one or more forms. 

A greater effort by ACT Government is needed to publicise these options. 

Encouraging doctors to discuss these options is also required.  In a busy medical practice, the process of filling out the Form is time consuming, with little financial incentive.

 To be able to leave when it is time to go and not to have life prolonged pointlessly

 There are many factors which contribute to an individual deciding when it is time to die.  Although this should be a personal choice, other factors may impinge.  Pressure can come from medical practitioners who cannot discuss that it is time to accept death.  They may delay the inevitable by introducing possible new treatments and overemphasise the outcomes.[17]  Pressure can also come from family who are reluctant to accept death and wish everything possible to be done. This is especially if dying has not been discussed with them beforehand.

Usually it is the fact that total quality of life has gone and suffering cannot be controlled that result in the person’s decision that it is time.   Existential suffering, such as not being able to engage in activities that make life enjoyable, losing autonomy and loss of dignity, are the predominant sufferings from which relief by assisted dying is requested.[18] 

 

The end of life restrictions in the ACT

1. Palliative care

Palliative care restrictions

Palliative care can play a major role in care in life.  Its place is not restricted to end of life care although this is a place where it is often a major part.  Specialist palliative care in Australia ranks amongst the better, in the world.  Palliative care physicians are skilled in the management of existential suffering and in relief of pain, however, even with the best palliative care available, in the ACT there remains a small number of patients whose suffering cannot be relieved (read infra)on.

 The Position Statements of two leading medical organisations in Australia agree that palliative care fails to relieve all suffering in some individuals.

 The Australian and New Zealand Society of Palliative Medicine (ANZSPM) Position Statement on Euthanasia and Assisted Suicide, Statement 8, affirms that:

Despite the best that Palliative Care can offer to support patients in their suffering, appropriate specialist Palliative Care to remedy physical, psychological and spiritual difficulties may not relieve all suffering at all times.[19]

 

The Australian Medical Association (AMA) Position Statement on Euthanasia and Physician Assisted Suicide 2016, Statement 1.3 indicates that:

For most patients at the end of life, pain and other causes of suffering can be alleviated through the provision of good quality end of life care, including palliative care that focusses on symptom relief, the prevention of suffering and improvement of quality of life. There are some instances where it is difficult to achieve satisfactory relief of suffering.[20]

  2. Effect of deficiency inspecialist palliative careon managing end of life preferences  

 Two leading medical organisations agree that palliative care cannot relieve suffering in all individuals.  It must therefore be concluded that the current practice of palliative care in the ACT fails to relieve suffering in some patients.

 3.   Oppositionto assisted dying by some medical organisations in inhibitingend of life preferences in the ACT

The ANZSPM states that:

The Palliative Medicine discipline does not include the practice of euthanasia or assisted suicide.[21]

It believes that:

Treatment that is appropriately titrated to relieve symptoms and has a secondary and unintended consequence of hastening death, is not euthanasia.[22]

and

Palliative sedation for the management of refractory symptoms is not euthanasia.[23] 

 

The AMA Position Statement on Euthanasia and Physician Assisted Suicide 2016 indicates:

Statement 3.1

The AMA believes that doctors should not be involved in interventions that have as their primary intention the ending of a person’s life.[24]

and

Statement 1.4

All dying patients have the right to receive relief from pain and suffering, even where this may shorten their life.[25]

 Neither of these organisations, after acknowledging that suffering cannot always be relieved for some persons, provides guidance on how the intractable suffering of those persons should be managed.

 

 4. Support shown for assisted dyingby other medical organisations indicates thatend of life preferencescould be achieved in the ACT

 Royal Australian College of General Practitioners (RACPG)

Although specialised palliative care is invaluable in providing end of life care, most every day care is provided by General Practitioners.

The RACGP recently issued a media release welcoming the passage of the Victorian assisted bill, in the Lower house.[26]

 The President said:

 “The voluntary assisted dying bill is about meeting the needs of terminally ill patients with incurable medical conditions who do not find answers in palliative care.”

 “Those patients are dying and we should allow them to die with dignity and respect.”

 “The RACGP is satisfied that appropriate safeguards for patients, relatives, and medical and health practitioners have been put in place in the legislation.”

 “The RACGP is also satisfied that the principle of conscious objection has been upheld, which means that medical practitioners have a choice of not participating in the voluntary assisted dying process.”

Australian Nursing and Midwifery Federation (ANMF)

Nurses, above all health care professionals, are paramount in providing end of life care.  They are at the bedside of people who are dying.  Patients share their cares and concern with them; they in turn combine compassion with professional care; they are there at the time of death.

The Australian Nursing and Midwifery Federation expressed its support for assisted dying in a recent media release, following the passage of Victorian assisted dying bill, in the Lower House (quote): [27]

 "The ANMF, in collaboration with the ANMF Victorian Branch, have long campaigned for laws which ensure that people suffering from terminal and incurable illnesses, are provided with the power and protection to have choices about the timing and manner of their death”.

 “Today, we are heartened that Victorian politicians have listened.”

 2. Effect of opposition of medical organisationson managing end of life care in the ACT.     

Planners of health care delivery and politicians turn to medical organisations for advice in delivery of health care.  Both the ANZSPM and AMA are not representative of the general medical community and their conservative views on assisted dying are not shared by all medical practitioners.

70 % of doctors are not members of the AMA.

Recent media releases (above) clearly confirm that opposition to assisted dying as a choice in end of life care is not supported by major sections of the medical community who are closely involved with delivery of end of life care.

Despite these figures, there is no doubt that the Statements by some organisations and the seizing on them by opponents, is inhibiting the progression to legalisation of assisted dying in the ACT, resulting in unnecessary suffering by ACT citizens.

 3. Methods of terminal care approved by medical organisations - effect on end of life preferences.     

 As indicated above, the ANZSPM believes that:

Palliative sedation for the management of refractory symptoms is not euthanasia

The AMA states:

All dying patients have the right to receive relief from pain and suffering, even where this may shorten their life.[28]

 Thus, both organisations agree that in the presence of unrelievable suffering sufficient medication should be given, even if this ultimately contributes to the patient’s death. 

One treatment used is named palliative sedation or terminal sedation.

  Palliative sedation/Terminal sedation 

In this treatment a patient’s symptoms are controlled by administration of ever increasing doses of sedative and anxiety relieving drugs, till the death of the patient.  This may take days, with the patient in a comatose or semi-comatose state, often watched by distressed relatives.  Food and fluid are not given.  In most cases additional intravenous hydration is not added.

The essence of this management is the opinion is that the drugs are given with the intention of controlling symptoms and not given to cause the death of the patient; nor is this the intention of the treating doctor. The patient’s death is an unintended side effect of the treatment.  Administration of drugs to deliberately cause death, is a criminal offence.  The criminality or not of palliative sedation rests with the intention of the doctor - an intention that cannot be known by the observer and perhaps sometimes by the doctor.

This procedure is labelled by some as slow euthanasia.

Some see hypocrisy in defining as legal the prolonged administration of drugs, till a slow death by sedation and dehydration occurs but as illegal the controlled administration of drugs, to consenting adults, to achieve a desired assisted death, at the time of the patient’s choosing, in the company of loved ones.

4. Effect of legality and uncertaintyof palliative sedation on managing end of life preferences by medical personnel

  1. Palliative sedation commits patients in the ACT, with unrelievable suffering in the terminal phase of illness, to a prolonged death process, in a coma, watched by loved ones; a process which could occur expeditiously at a time of the patient’s choice if assisted dying was available in ACT.
  2. The frequency of the procedure in the ACT is undocumented.  There is no accountability and no uniformity in availability in the ACT.
  3. The uncertainty about the terms defining the legality and intent of the procedure causes many doctors to avoid it or to use minimal drug administration.  Inevitably, in the absence of legalised protection for the medical practitioner undertaking the procedure, some patients in the ACT receive inadequate symptom relief.

5. Place of death and end of life preferences

In Oregon between 1998 and 2016, 93.4% of people, who were assisted to die, died at their home or at the home of family or friend.[29]  [30]

In Australia although 70% of people want to die at home, only 14% do.[31]

Most ACT citizens die in institutions even though most would prefer to die at home.  Lack of legal assisted dying prevents ACT citizens from achieving their preferred place of dying.

 

Term of Reference 2

ACT community views on the desirability of voluntary assisted dying being legislated the ACT

There is ample evidence from surveys in Australia for the past twenty years that Australians want the availability of the choice of legal assisted dying.  The surveys have not been specifically for the ACT but there is no reason to doubt that the wishes of ACT citizens would differ from those of other Australians.

 The Scanlon Survey

The Scanlon Foundation is based in the Faculty of Arts, Monash University, Victoria.  The Scanlon Foundation Surveys, rely on probability-based methods for surveying the population and are more accurate than online panels.  The Surveys use statistically based techniques which allow the surveyed population to be a statistically similarity structure to the total population.  The Scanlon Foundation Survey 2016, Mapping Social Cohesion[32], asked the question:

 “Do you support or oppose legislation for medically approved euthanasia for people suffering terminal illness?”

The following results were obtained:

Strongly support or support                        79.9 %

Oppose or strongly oppose                          12.9 %

Neither support or oppose                             3.2 %

Refused or don’t know                                     3.9 %

 The conclusion is obvious:

 80 % of adult Australians support the establishment of legal voluntary euthanasia.

 The Essential Poll. Australia - August 2017

This nationwide poll was conducted by Essential Research from 10 to 14 August 2017.[33] 

1,000 respondents were asked: 

 “If someone with a terminal illness who is experiencing unrelievable suffering asks to die, should a doctor be allowed to assist them to die?”

 The conclusion again is obvious:

73 % of Australians support voluntary assisted dying.

In the age group 55+, the support was 81 %

 Other surveys

 There are many other surveys: they show a progressive increase in the support for legalised voluntary assisted dying.  The trend is demonstrated in surveys by Roy Morgan surveys over the past 50 years, which asked the question:[34]

“If a hopelessly ill patient with no chance of recovering asks for a lethal dose, should a doctor be allowed to give a lethal dose, or not?”

Again, support for assisted dying was high.

 

Nov
1946

May
1955

Oct
1962

Nov
1978

Sep
1983

Apr
1986

Apr
1987

Apr
1989

 

%

%

%

%

%

%

%

%

Give lethal dose

n/a

n/a

47

67

67

66

75

71

Not give lethal dose

n/a

n/a

39

22

21

21

18

20

Undecided

n/a

n/a

14

11

12

13

7

9

TOTAL

100

100

100

100

100

100

100

100

 

 

Jul
1990

Jul
1991

Mar
1992

May
1993

May
1994

Jun
1995

May
1996

Nov
2017

 

%

%

%

%

%

%

%

%

Give lethal dose

77

73

76

78

78

78

74

85

Not give lethal dose

17

20

18

15

13

14

18

15

Undecided

6

7

6

7

9

8

8

-

TOTAL

100

100

100

100

100

100

100

100

Table 1. The support for assisted dying for a hopelessly ill person has been high from the late seventies to a level similar to that shown in the recent Scanlon Survey.

 

Terms of Reference 3

Risks to individuals and the community associated with voluntary assisted dying and whether and how these can be managed

 Opponents to assisted fabricate scare tactics to bring doubt to considerations of the facts associated with properly formulated assisted dying legislation.

 Some of the unsupported claims made by opponents:

  • Palliative care relieves all suffering so assisted dying not required
  • Legalising assisted dying undermines development of palliative care
  • Legalising assisted dying will lead to a “slippery slope” of unrestricted killing
  • Assisted dying degrades the doctor – patient relationship
  • Assisted dying is killing and is unethical

 here is ample. research based evidence that voluntary assisted dying can be practiced in a community without bringing risks to the community.

The Oregon Death with Dignity Act

The Act became law on October 27, 1997.  It has remained, unchanged since then.

The Act allows, under strictly prescribed circumstance, terminally-ill Oregonians to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose.

A requirement of the Act is that Oregon Health collects and publishes annual statistics relating to the application of the Law.  Nineteen years of annual reports are available from Oregon Health.[35]               The 2016 Report provides a summary of the application of the Act from 1998 to 2016.[36]  Examination of the Report does not show that there are risks to individuals and the community associated with voluntary assisted dying and dispels the non-evidence-based claims of the risks associated with assisted dying, made by opponents.

Statement made by opponents of Assisted dying

Experience in Oregon negates the following claims of opponents of assisted dying.

Slippery slope                                                              

 There is none.

In 2016, in Oregon, 133 people died as a result of ingesting the prescribed medication.  This represents 0.372% of all deaths in that year.  Not the catastrophic, inevitable slide into an increase in death rates, predicted by those opposing assisted dying.

 Assisted dying will target the old and infirm

 Not supported by evidence.

From 1998 to 2016, 1127 people died under the conditions imposed by the Death with Dignity Act.

30.3% of these were in the age group 65 – 74; this is not an old aged group.

If the groups below (55 – 64) and above (75 – 84) are added to this (65 – 74) group, 75.9 % were clustered around the mean age of 71: only 15% were above the age of 85.  There was no concentration of deaths in the elderly.

Assisted dying will disproportionally affect the disadvantaged

Not supported by evidence.

The cumulative totals show that 96.5% of those who accessed assisted dying were white and 72.0% had some college, university or higher education. 90.2% were enrolled in hospice care, 98.6% had private or Government assisted medical insurance.  These are not characteristics usually associated with disadvantage.

Criteria for assisted dying will progressively be relaxed  

Not supported by evidence. The indication for assisted dying was malignant disease in 77.4% of deaths by assisted dying, in 1998 to 2016.  Amyotrophic lateral sclerosis was present in 7.9 %.  The criteria of the Act have not changed since its inception.

 Other evidence

1. Dr Roger Hunt, BM, BS, GDPH, FAChPM, MD is a palliative medicine specialist, working in the discipline for three decades.  He is a life member of the Palliative Care Council of South Australia. 

He has an MD awarded by published work.

Dr Hunt was a member of the Victorian Parliament Ministerial Advisory Panel on Voluntary Assisted Dying,[37] whose recommendations were adopted in formulating the Victorian Voluntary Assisted Law 2017.  Dr Hunt systematically refutes these claims made by opponents of assisted dying.[38]

 2.  A comprehensive, evidence-based report, by DWD NSW provides compelling factual proof of the fallacy of the claims, made by opponents,[39] as does a report from Dying with Dignity.[40]

Other States and laws

The safety and functionality of the Oregon law has been accepted by other States in the USA.

Laws based on the Oregon Act, have now been introduced into California, Colorado, Vermont, Washington and the District of Columbia.  There are now 52.5 million (1 in 6) Americans with access to medically assisted dying and nine other States are considering similar legislation.[41]

Risks to the ACT community

The evidence clearly shows that legal assisted dying is being undertaken safely in other jurisdictions.    It follows that an appropriately worded law, with accepted safeguards, could be instituted in the ACT without posing risks to individuals or the ACT community.  Such a law could address the perceived risks, to ensure acceptance by the ACT community.

 

Term of Reference 4

The applicability of voluntary assisted dying schemes operating in other jurisdictions to the ACT, particularly the Victorian scheme

 Characteristics of the Oregon Death with Dignity Act which make it applicablew to the ACT

Consideration of the nineteen years of the Oregon Health Report[42] provides evidence for the applicability of a similar law in the ACT.  Just as in Oregon, the numbers of people using the law would be very few; the old, infirm and disadvantaged would not be targeted and relaxation of the criteria could happen only by the passage of legislation in the ACT Parliament.

The Victorian Voluntary Assisted Dying Act 2017

The Victorian Voluntary Assisted Dying Act was Assented to on 5 December 2017. [43]  

The Act is based on the Oregon Assisted Dying Act. In general, the Victorian Act regulations would be applicable as the basis for an Act in the ACT.  It is very restrictive does however and imposes conditions which are not in the Oregon Act.  Of particular interest to the medical community these are:

  • Clause 8 states:

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

Restricting medical practitioners from initiating discussion on assisted dying compromises the doctor - patient relationship of provision of information in the care of the patient.  This restriction of information on all options available in care, in discussions between medical practitioner and patient, does not occur in any other area of medicine.

There is no logical reason for this Clause.

  • Death certificates

The instructions issued by Oregon’s Public Health Division and Health Authority on how to fill out death certificates do not mention physician-assisted suicide at all. Testimony presented at trial in Carter v. Canada (Attorney General) indicated that it is “common, if not invariable” for physicians in Oregon “to record the underlying illness as the cause of death” for those who died under the Act.[44]

The Death Certificates for those assessing assisted dying in Vermont, Washington State, Quebec and Belgium contain no reference to assisted dying.[45]

Death Certificates under the Victorian Voluntary Assisted Dying Act will record the underlying illness as the cause of death but will also record the manner of death as voluntary assisted dying.[46] 

Statistics on number of deaths are recorded by other means.  We see no reason for Victoria to record this on a death certificate, in inconsistency with all other situations where legalised assisted dying exists.

 

Term of Reference 5

The impact of Federal legislation on the ACT determining its own policy on voluntary assisted dying and the process for achieving change 

Existing Federal legislation inhibits the ACT from determining its own voluntary assisted dying policy.  The medical consequence of this situation is a continuation of unrelieved suffering by some residents of the ACT.

 

Term of Reference 6

Any other relevant matter

As the name of our group, Doctors for Assisted Dying Choice indicates, we believe that rational adults, who for reasons of intolerable suffering with no realistic chance of cure or relief, wish to gently end their lives, should have the right to access legal assisted dying, at a time and place of their choosing, in the company of friends and loved ones of their choice.

 

 

Associate Professor Arnold Gillespie MB BS BSc FRCOG FRANZCOG

 

With input from

Dr Alida Lancee MBBS FRACGP

Dr Ian Catto MBBS, FRACGP

Adjunct Professor Richard Lugg FAFPHM

and

 Names of agreeing members attached here in the Submission


                                        

[1] Australian Institute of Health and Welfare. February 2017, Deaths.

https://www.aihw.gov.au/reports/life-expectancy-death/deaths-in-australia/contents/age-at-death

[2]  Lynne, J and Adamson, D 2003,’Living well at the end of life’, Rand Health, White paper. Adapted from https://www.rand.org/content/dam/rand/pubs/white_papers/2005/WP137.pdf

[4] Swerissen. H & Duckett, S 2014, Grattan Institute. ‘Dying well’, page 8.

https://grattan.edu.au/report/dying-well/

[5] Smith, R 2000, ‘A Good Death’, British Medical Journal. 2000 Jan 15; 320(7228): 129–130.

[6] Swerissen, H and Duckett, S 2014, Grattan Institute, op. cit. page 11

[7] Swerissen, H and Duckett, S 2014, Grattan Institute, op. cit. page8

 [9] Go Gentle Australia, The Damage Done.

http://www.gogentleaustralia.org.au/the_damage_done

[10] Dying Badly – New Zealand Stories, End-of-Life Choices Society of New Zealand.

https://www.smashwords.com/books/view/760513

[11] Swerissen, H and Duckett, S 2014, Grattan Institute, op. cit. page 8.

[12] Foreman, L M et al (2006), ‘Factors predictive of preferred place of death in the general population of South Australia’, Palliative Medicine, 20(4), p 447-453.

http://journals.sagepub.com/doi/abs/10.1191/0269216306pm1149oa

[13] Swerissen, H and Duckett, S 2014, Grattan Institute, op. cit. page 6.

[14] Oregon Death with Dignity Act, summary 2016. Op. cit. Page 4.

[15] Swerissen, H and Duckett, S 2014, Grattan Institute, op. cit. page 2

[17] Kellehear, A. 2007: A social history of dying, Cambridge University Press

https://www.cambridge.org/core/books/social-history-of-dying/557FA3B9285436ADBA5C858900B83661

[18] Oregon Death with Dignity Act, op. cit. 2016

[19] . ANZSPM-Position-Statement-Euthanasia-and-Assisted-Suicide, 2016, Statement 8, page4  http://palliativecarewa.asn.au/site/wp-content/uploads/2014/03/ANZSPM-Position-Statement-on-Euthanasia-and-Assisted-Suicide.pdf

 

[21]  ANZSPM-Position-Statement-on-Euthanasia-and-Assisted-Suicide, 2016, Op. cit. Statement 1, page 3

[22]  ANZSPM-Position-Statement-on-Euthanasia-and-Assisted-Suicide, 2016, Op. cit. Statement 4, page 3

[23]  ANZSPM-Position-Statement-on-Euthanasia-and-Assisted-Suicide, 2016, Op. cit. Statement 5, page 3[23]

[24]  .AMA Position Statement Euthanasia and Physician Assisted Suicide 2016. Op. cit. Statement 3.1, page 2

[25]  .AMA Position Statement Euthanasia and Physician Assisted Suicide 2016. Op. cit. Statement 1.4, page 1

[26] Royal Australian College of General Practitioners, Media release, 20 October, 2017.

https://www.racgp.org.au/yourracgp/news/media-releases/racgp-welcomes-moves-to-allow-terminally-ill-victorian-patients-to-die-with-dignity-and-respect-(1)/

 [27] Australian Nursing and Midwifery Federation, Media release.29 November 2017.

[28]  AMA Position Statement Euthanasia and Physician Assisted Suicide 2016. Op. cit. Statement 1.4, page 1

[30]  Tolle, SW & Teno, JM 2017, 'Lessons from Oregon in embracing complexity in end-of-life care', New England Journal of Medicine, 376(11), pp. 1078-1082.

http://www.ohsu.edu/xd/education/schools/school-of-medicine/departments/clinical-departments/family-medicine/about/upload/17031616.pdf

[31]  Swerissen, H & Duckett, S 2014, ‘Dying well’, Grattan Institute.

 https://grattan.edu.au/report/dying-well

[38]  Hunt Roger 2015, ‘For Euthanasia: Murder versus mercy’, Australian Medical Students Journal,

December 2015.  http://www.amsj.org/archives/4470

[41] Kliff, S 2015, 1 in 6 Americans now live in a state where physician-assisted suicide is legal.

 https://www.vox.com/2015/10/7/9470537/assisted-suicide-where-legal

[42] Oregon Death with Dignity Act.  Data Summary 2016. op. cit.

[44] Downie, J & Oliver, K 2015, CMAJ December 14, 2015 cmaj.151130; DOI:

https://doi.org/10.1503/cmaj.151130

Appendix 2.  http://www.cmaj.ca/content/suppl/2015/12/14/cmaj.151130.DC1

[45] Jocelyn Downie, J & Oliver, K. op. cit.

[46] Media Release, 29 November 1917.  Hon Daniel Andrewhttps://www.premier.vic.gov.au/wp-content/uploads/2017/11/171129-Victoria-First-State-To-Pass-Voluntary-Assisted-Dying-Laws.pdf

...................................................................................................................................................................................................................................

 


 

 

.


 


Doctors for Assisted Dying Choice

 

10 July 2017

 

The Hon. Trevor Khan MLC

Deputy President and Chair of Committees
Member, NSW Parliamentary Working Group on Assisted Dying

 

Dear Mr Khan

 Thank you for your letter of the 18th May 2017 inviting Doctors for Assisted Dying Choice to participate in public consultations on the Draft Voluntary Assisted Dying Bill 2017 (NSW).                   Our membership includes a wide spectrum of specialist and general medical practitioners and it is likely that many of our members would be fulfilling the role of primary medical practitioner or secondary medical practitioner, as a medical practitioner registered under the Health Practitioner Regulation National Law in a specialty in the medical profession that is relevant to the diagnosis or treatment of the terminal illness from which the patient is suffering, as specified in the Draft.

 We make the following comments and recommendations on medical matters in the Draft Bill:

  Clause 4 (a)

Raising the age limit at which a person may apply for assisted dying to 25, as proposed in the Draft Bill is not supported by medical science or current practice.   In NSW, as in other jurisdictions, patients are able to consent or refuse all treatments from the age or 18 and in many cases, younger. This consent includes permission for major operations, such as cardiac and renal transplant surgery. Persons aged 18 may also decline all medical care, if judged to be competent.

 According to the NSW Minors (Property and Contracts) Act 1970 No 60

Part 2 Capacity at eighteen years

(9) 1  “… a person aged eighteen years or upwards on the commencement of this Act or who attains the age of eighteen years after the commencement of this Act:

(c)  is of full age and adult

This definition of adulthood and ability to give consent is the definition adopted by doctors when providing medical treatment.  Prescribing an authorised substance as described in the Bill, is a medical treatment.  In certain cases in NSW, there are provisions for a review of the clinical situation by a panel of experts and the family as well as the patient.

 While 9 (1)(b)  “except so far as the context otherwise requires, for the purposes of:

(i)  any Act, whether passed before or after the commencement of this Act”

allows the modification of this decision, there is no compelling medical reason why this should apply in this Act.

 Recommendation 4 (a): The age limit at which a request for assistance to voluntarily end life can be made to the primary medical  practitioner should be 18 years but there be a provision for a Board of Review for younger cases, if applied for.

 

Clause 4 (b)

For the purposes of the Act there may be justification in stating that the person has a terminal medical condition.  There is no compelling medical reason to add a time frame to the expected time of death to define a terminal illness.  A terminal illness is one which will result in death.  A practical point is that accurate prediction of the time of death is not always possible.

 Recommendation 4 (b): The 12 month time limit be removed and more emphasis be given to existential suffering as a trigger for the Application.

 Clause 4 (d)

Patient suffering is at the core of the issue. The current wording could be interpreted as the patient needing to be experiencing both pain and suffering or experiencing physical incapacity. For clarity of interpretation by the medical practitioners involved this sub-clause “...experiencing severe pain, suffering or physical incapacity to an extent unacceptable to the patient” should be modified.

 Recommendation 4(d): Clause 4(d) Should be modified to “...experiencing severe pain or suffering or physical incapacity to an extent unacceptable to the patient”.

 Clause 6

This is an essential clause.  Medical Practitioners have the right to choose not to provide or directly participate in treatments to which they have a conscientious objection, as set out in the Medical Board of Australia’s Good Medical Practice: A Code of Conduct for Doctors in Australia (section 2.4.6).  However, section 2.4.7 of the same publication makes it clear that doctors must not allow their “moral or religious views to deny patients access to medical care ... ”

 Recommendation 6: The Bill should include a reference to this Code, making it clear that a primary medical practitioner may refuse to provide or to participate in assistance in dying, but must not deny or impede a patient’s access to such assistance.

 Clause 9

 Recommendation 9: This is an essential clause consistent with general medical provision of treatment.

 

 Clause 10

Recommendation 10: An essential clause ensuring that only tested substances will be prescribed which are known to achieve the desired outcome.

We note that no specific medication has been mentioned in the Act. Worldwide, Nembutal (pentobarbitone) is considered best practice for this purpose.  We suggest that consideration be given to naming this medication and detailing the procurement process for the purpose of this Act.

 

 Clause 11 and Clause 12

Recommendations 11 & 12: These clauses are necessary to ensure that medical opinion is not clouded by potential gain by the providers of medical treatment.

 

 Clause 14

While the intent of this clause is obvious it engenders unintended outcomes.

Securing an appointment with a Specialist, even in the city, may take weeks, particularly as there may be a limited number of Specialists who choose to be involved in assisted dying. The imposition of a further prolongation of the time during which the patient must endure “severe pain, suffering or physical incapacity to an extent unacceptable to the patient” is cruel. 

In rural Australia, access to Specialists in situ is markedly restricted.  Access may be restricted as indicated above but an additional imposition could be that a lengthy journey by a seriously ill patient to the city may be necessary; again a cruel and an unnecessary imposition.

 Recommendations 14Clause 14 (3) (a) be amended to where it is possible the secondary medical practitioner is registered under the Health Practitioner Regulation National Law in a specialty in the medical profession that is relevant to the diagnosis or treatment of the terminal illness from which the patient is suffering.

After being examined by the Primary Medical Practitioner, the implementation of the condition relating to specialist qualifications should not cause delay in the determination of a patient’s ability to be assessed for the purpose of determining the person’s eligibility for assistance in dying.

 Clause 15

Provides clear guidelines for the provision of information by the Primary Medical Practitioner and is to be supported

Recommendation 15:  Clause 15 should be accepted.

 Clause 16

16 (1) The essential attainment of a consultation with a psychiatrist or psychologist implies that all persons making a request for assisted dying are mentally unstable, are not of sound mind and their decision-making capacity is adversely affected.  There is no medical evidence supporting these assumptions.

 One of our experts, a Professor of Clinical Liaison Psychiatry, makes several points with regard to this:

16 (2)

 (a) “Sound mind” is an archaic term, although we do understand that it is still used in legal terminology.  “Competence” is a more appropriate medical term.

 (b) There is no reason to think that psychologists are skilled in making determinations about decision making capacity (DMC). Psychiatrists are medically trained and understand the effects of medical illness on mental capacity.  Australian psychiatrists complete 6 months training in consultation-liaison psychiatry where they learn about the interface of psychiatry and medicine and about capacity testing.

 The psychiatrist should not be asked to determine if DMC has been “adversely affected”, but whether or not the person has DMC, specifically with respect to the decision to ask for assistance to end his or her life.

 (c) There is no reason to believe that psychologists or psychiatrists have any expertise in determining whether the "assistance has been made freely” or “voluntarily” or in fact “after due consideration”, though the last will form some part of the capacity assessment.

 Recommendations 16: That the primary and the second medical practitioner be allowed to follow current practice and call for competence assessment only if there is a clinical suspicion.

Psychologists not be engaged for this purpose.

“Soundness of mind” should be replaced by “competence”; the correct medical term.  Competence be in relation to this decision alone.

Social Workers be engaged on the team if required.

 Clause 17

 Recommendation 17: 17 (a) (ii) Should be slightly reworded to “the illness is causing the patient severe pain OR suffering or physical incapacity to an extent unacceptable to the patient.

Sub-clause 17 (a) (v).  While this sub-clause may be desirable, the decision is the decision of the patient who is suffering, not the spouse, partner or family of the patient.

Recommendation17: 17 (a) (v) The primary medical practitioner should ask the patient if he has considered the possible implications of the patient’s assisted death for the spouse or de facto partner or family, but this should not be a requirement.

 

 Clause 18 (2)

There is no medical necessity to delay the signing of the Certificate for a minimum period of 7 days.  No other agreement between a patient and a medical practitioner for the provision of medical treatment requires a minimum delay period between a verbal request for treatment and a signed request for treatment.

 Recommendation 18 (2): Remove the 7 day requirement.

 Clause 19

 The provision of an interpreter is an important factor.  In relation to the credentialing of the interpreter, the Bill should specify that this person is not only officially certified by the State in the relevant language or Auslan but that they hold no relation or interest to the patient.

 Recommendation 19:  That the Bill include further tightening of the requirement of an interpreter to be independent of the patient and family.

 Clause 21

There is no medical justification for a close relative to be able to make an Application to the Supreme Court to question the decision of an adult person to give permission for a medical treatment for that person.    The Certificate is signed after application by the patient and approval by three registered medical practitioners.  It is an infringement of the patient’s right to determine his or her own medical treatment and an insult to the integrity of the medical practitioners.

 Recommendation 21: Delete Clause 21.

 Clause 24 (1)

Is essential not to infringe the beliefs or integrity of a medical practitioner

Recommendation 24   (1): Accept as consistent with desirable medical practice.

 Clause 24 (2)

Is consistent with current medical procedure when care of a patient is transferred to another practitioner.

Recommendation 24 (2): Accept as consistent with desirable medical practice.

 

 Clause 25

Is essential for the protection of a protected person, who is acting in good faith, under the conditions of the Act.

Recommendation 25: Accept Clause 2.

 Clause 27

Is sound and would add weight to ensure the provisions of Clause 25 prevail if contested.

Recommendation 27: Accept Clause 27.

 Clause 29

This Clause provides legal guidelines for the provision of a Death Certificate by the Primary Medical Practitioner, under the conditions of the Act.

Recommendation 29: Accept Clause 29.

 

Oversight

 We note that the Draft Bill does not contain any reference to mechanisms of oversight or review of the functioning of the assisted dying legislation.  We believe that this a deficiency.

 The Victorian Legislative Council Legal and Social Issues Committee Inquiry into end of life choices recommended the establishment of an Assisted Dying Review Board, (Para8.9.1). 

The recommendations are summarised in the paragraph headed Oversight, page 21, Ministerial Advisory Panel, Voluntary Assisted Dying Bill Discussion Paper.

 The composition of the Board is suggested.  The function of the Board will be to ensure that doctors are complying with requirements of the assisted dying act, by retrospectively reviewing the actions of medical practitioners in each instance of voluntary assisted dying.  The Board will not be involved in the approval or rejection of requests from patients to access assisted dying: that will remain the role of the primary doctor and independent secondary doctor in each case. 

For the purposes of transparency and accountability, the Board should produce reports to Parliament, which are available to members of the community.

 

We believe these recommendations could provide a framework for similar proposals to be developed in the NSW Assisted Dying Bill.  We endorse these recommendations from a general and medical perspective.

 Recommendations:

That

  • an Assisted Dying Review Board be established within the framework of the NSW Voluntary Assisted Dying Bill.
  • the Board reports to Parliament on the functioning of the Bill
  • the Board produces an annual summary of activities under the conditions of the Bill
  • the summary is available to members of the community.

 

In conclusion:

 We hope that our comments on medical aspects of the Draft Voluntary Assisted Dying Bill 2017 (NSW) are useful in assisting in determining the content of the Bill.  It is obvious from the name of our organization that the members are doctors who support the concept of choice in assisted dying.  In most cases this support results from member’s experiences in their practice in dealing with dying patients in unrelievable distress.

 

Yours sincerely

 Dr David Leaf B Med FRACGP FACRRM ([email protected]),

Professor Rufus Clarke MA MD PhD MPH FRACS FAFPHM ([email protected])

for NSW State Convenor Group

 and

 Names of agreeing members here

 

 


 

 

 

 

 Letter to members Tasmanian Assembly 

 

 

 

Doctors for Assisted Dying Choice

 

 

17th May 2017

 

 

Title MP name MP

Member for Electorate

 Address

 

Dear Salutation Surname

 Doctors for Assisted Dying Choice is a group of medical practitioners from all States and Territories in Australia. We believe that rational adults who are suffering from a medical condition, with no realistic chance of cure or relief from intolerable symptoms, should have the legal option of seeking medical assistance to end their lives, under carefully prescribed conditions, at a time of their choosing.

 We consider that the Tasmanian Voluntary Assisted Dying Bill 2016, to be debated on May 24th, encompasses much wisdom and experience, distilled from previous legislative processes overseas and fine-tuned with more recent Australian legislative endeavours.  As such it incorporates more clarity of intent, more safeguards and more compassionate understanding than all previous Bills in Australia.

Our submission focuses on the role, involvement and responsibilities of doctors, in ensuring that assisted dying is available only to those who satisfy the rigid criteria of the Act, while protecting the infirm and vulnerable from abuse.  We have identified these tasks in the applicable Sections below.

 

 S 4 Clearly indicates that there is no extension of the circumstances in which a person’s life may be ended by a doctor or any other person, except as permitted by the conditions of the Act.

 S 8 Defines the restrictive condition and only situation in which a doctor can assist in the death of a person – the person must be an Eligible Person, as defined by the criteria of the Act.

 S 9 Details the exact conditions that have to be satisfied before the person’s primary medical practitioner can define the person as an Eligible Person and prevents slippery slope scenarios developing due to the specificity of the criteria to be an Eligible Person.

 S 10 Further prevents any slippery slope by requiring the person’s primary medical practitioner to determine that the person is competent and making the request voluntarily.

 S 11 Eligible Medical Condition.  Does not refer to the vague and open-ended term terminal illness, but precisely outlines the medical circumstances in which the Act may be applied.  These circumstances are quite clear and restrictive.  The doctor and the person, in joint consultation, decide if there is an Eligible Medical Condition.

 he doctor must determine that:

 

  •  the person has the advanced stages of a serious, incurable, irreversible medical condition, and
  • there is no reasonably available medical treatment or palliative care that would relieve the person’s suffering in a manner that is acceptable to the person.

 

The person must decide that:

  • the medical condition is causing persistent, intolerable suffering and
  • there is no treatment that would relieve the suffering that is acceptable.

 This Section emphasises the seriousness of the medical condition and that no reasonably available medical or palliative care options are available; voluntary assisted dying is complementary to these options, not competitive.

 It is anticipated few persons will avail themselves of the assisted dying opportunity

 S 14 This section further clarifies the role of the primary medical practitioner, with extensive checks and balances involved (discussions with eligible person, medical record reviews, second opinion with counsellor, feedback to the eligible person etc).

 S 18 and S 19 Further emphasise the collaborative and interactive roles of the primary and secondary medical practitioners, both of whom must be convinced that the request is an Eligible Request and the medical condition is an Eligible Medical Condition. These sections emphasise the objectivity of the medical opinions by ensuring the independence of the primary medical practitioner and the secondary medical practitioner.

 The actions to be implemented if the opinions of the primary and secondary medical practitioner differ are also detailed.

 S 22 Defines the partnership functions between the Eligible Person and the primary medical Practitioner and details again the stringent criteria that must be satisfied before the final declaration that the person is an Eligible Person. 

These include determining that the patient’s request is an Eligible Request, as define by the Act, discussing with the person whether there are any relevant treatment options available that may adequately improve the person’s medical condition or relieve the person’s suffering.

 The primary medical practitioner must also offer the Eligible Person an opportunity to rescind any assisted dying request.

 S 23 Lists more conditions and safeguards that must be present before the primary medical practitioner may issue an assisted dying prescription.  To ensure thsafety of the prescribed medication, the primary medical practitioner must personally deliver the prescription to the pharmacy, must collect the medication and must retain possession of the prescribed medication until the prescribed medication is to be administered.

 S 24 Indicates that the medication may be self-administered or administered by the primary medical practitioner, only.  If self administration is chosen, the medical practitioner must remain in the near vicinity of the person, while the medication is being ingested.

 S 25 Prescribes the duties of the medical practitioner to ensure safe collection of any unused medication.

 

 We have closely reviewed and analysed the Tasmanian Voluntary Assisted Dying Bill 2016.  We believe it offers the Tasmanian community a further, considered direction when planning end of life choices.  As such, we see it complementing the existing medical and palliative care models. We urge you to enable a legislative pathway for this Bill to be enacted.

 

Yours sincerely

 

 Dr Scott Bell, Member Tasmanian Convenor Group, Doctors for Assisted Dying Choice

Bell Scott Dr ([email protected])  0419 527 354

 and

 Members’ names and qualifications go here in 2 columns.

 

 

 


 


 

 

Voluntary Assisted Dying discussion paper

Voluntary Assisted Dying Bill 2016

Victorian Parliament

 

 

 Doctors for Assisted Dying Choice

drs4assisteddyingchoice.org

30th March 2017

 

Professor Brian Owler

Chairman

Ministerial Advisory Panel

Victorian Assisted Dying Bill Discussion Paper

 

Dear Professor Owler

Re: Submission to Advisory Panel

Doctors for Voluntary Assisted Dying Choice 

Please find below the Submission to the Ministerial Advisory Panel from Doctors for Assisted Dying Choice in response to the Key Issues posed by the Panel.

 

The Person

  •  The Medical Treatment Planning and Decisions Act 2016 is sufficient. There is no need for further legislation concerning decision making capacity, in this context. The patient’s General Practitioner is generally the ideal professional to assess decision making capacity as they will know the patient over time and usually prior to the diagnosis of the illness.
  • A psychiatric assessment will only be required where one or both of the assessing doctors have concerns or doubts regarding the patient’s decision making capacity or if the request seems inappropriate, given the nature and stage of their illness. To avoid prolonged delays to patients who are badly suffering it will be necessary to ensure there is a mechanism to obtain a prompt psychiatric assessment.   

It would be rare for any other Specialist assessment to be necessary or appropriate.

 

Access and Eligibility

  • Greater specificity is not required to define end of life.  The time to end of life varies greatly and depends on the condition of the person, the illness and its variable rate of progress.
  • The definition of a serious and incurable medical condition should be determined by the patient and the doctor.  The patient can assess whether the condition is serious to that patient and the doctor can assess whether it is incurable, using current understanding of the disease.

The Parliamentary Committee further recommended that an eligible person must be

“...suffering from a serious and incurable condition which is causing enduring and unbearable suffering that cannot be relieved in a manner the patient deems tolerable”.

The obligation to satisfy these two requirements is unreasonably restrictive and discriminatory and not consistent with the statement that

“...the Committee believes that the needs of the patient must be squarely at the centre of an effective framework. Ensuring that the rights of patients are respected depends on the expertise and judgment of those working within the framework, particularly doctors.”

It is generally accepted by doctors, on whom the Committee charges the responsibility for “Ensuring that the rights of patients are respected that predictions of time till death are inaccurate. 

Even if this were not so, both suffering from a “serious and incurable condition” or experiencing “an enduring and unbearable suffering“ can and do occur without the patient being at the end of life.

Patients with Parkinson’s Disease, multiple sclerosis, amyotrophic lateral sclerosis and some congenital diseases are suffering from a “serious and incurable condition” but may not be “at the end of life”.  Forcing them to wait till they are near death before relief can be obtained, under the law, is cruelly condemning them to suffering that many would choose not to prolong unnecessarily, when a gentle death, at the time of their choosing and consistent with the Committee’s belief that “...the needs of the patient must be squarely at the centre of an effective framework” would be preferable.

Conversely patients may be suffering from “enduring and unbearable suffering that cannot be relieved in a manner the patient deems tolerable” without being at the end of life.  Examples are patients with respiratory failure requiring continuous oxygen dependence, chronic renal failure necessitating frequent dialysis, Locked in Syndrome or incapacitating stroke requiring  total dependency care.  Forcing ongoing continuation of life of a patient experiencing enduring and unbearable suffering that cannot be relieved in a manner the patient deems tolerable, is not consistent with the recommendation that “...the needs of the patient must be squarely at the centre of an effective framework”.

A qualifying term, such as “in the foreseeable future” would be preferable and consistent with the Committee’s belief that “...the needs of the patient must be squarely at the centre of an effective framework”.  Certainly there is no justification for choosing an arbitrary time, such as the last 6 months of life, as in American legislation.  This time limit is based on insurance requirements for eligibility for hospice and palliative care. No such requirements exist in Australian health care. 

  • Mental illness alone should not qualify under this legislation.

 

Making a request

  • Adequate safeguards would be achieved if two independent doctors with no conflict of interest make independent and thorough assessments after being provided with adequate background information about the patient’s condition.  Both doctors must be satisfied that the request is voluntary, appropriate and without coercion. 

The patient should be assessed without family or carers present so the possibility of influence or coercion can be explored.

  • Specification of a defined time period that must pass between the first and final request may prolong the time during which the patient is suffering. The requirements are
    •  to make an appointment with the first doctor
    •  be examined by that doctor; the doctor who then has to make a comprehensive report
    • the report has to be sent to the second doctor
    • the patient must make an appointment with the second doctor
    • the second doctor must make a report and refer the report to the first doctor
    • the patient must make another appointment with the first doctor who must then ensure that all requirements have been satisfied and must review all aspects of the patient’s request.

The distress caused by this prolonged period of required bureaucracy must be endured by a patient with enduring and unbearable suffering. Prolonging the suffering even more, by a prescribed period, is not justifiable.

  • There is no reason for any new offences to be legislated.

 

Properly informed

  • The legislation should include prescribed information that the medical practitioner must provide to a person requesting voluntary assisted dying. The list provided by the Parliamentary Committee is sufficient. In the case of Voluntary Assisted Dying it is better to err on the side of being prescriptive with the information provided in a language and format that the patient is comfortable with.

            The patient must understand the diagnosis, what treatment (both therapeutic and palliative) are     still available, the likely course of the illness, the manner of death if Voluntary Assisted Dying is     not employed and the likely manner of death if Voluntary Assisted Dying is undertaken (including       what will occur in the very unlikely event that the lethal drug does not work).

            Part of the information about Voluntary Assisted Dying will be conditions that the patient must    agree to includes:

  • that as few people as possible should be aware that the medication is stored  in their home
  • no mention of having the medication should be made via emails or to non-essential people
  • that the medication will be returned promptly to the pharmacist if they decide not to use it.
  • Online resources to support the assessing doctors should be easily available.

 

Confirming a request

  • The opinion of a doctor who is a Specialist in the illness from which the patient is suffering is not necessary and, in many country areas of Australia would be impossible to obtain. However, the assessing doctors must be experienced (minimum of 5 years’ experience, RACGP or equivalent) and participating in a CME program.      

            Ideally, Additional training will be required before providing VAD support.                                  

            The training would cover the

  • essential steps of assessment and counselling of a patient requesting VAD support
  • essential steps of assessment and counselling of a patient requesting VAD support
  • reporting and documentation requirements
  •  resources for information to be discussed with the patient.
  • Referring to a Palliative Care Specialist should be optional, not prescribed by legislation.

 

Conscientious objection

  • Conscientious objection is a moral decision of the Health Practitioner.  It operates in the community now, in everyday practice.  In general it is well handled.  No change is required.        In particular no legislation should be introduced to deny the Practitioner’s ethical freedom.
  • Health Practitioners should not be required to make a specific referral to another doctor to provide Voluntary Assisted Dying but it would be expected that they will provide appropriate medical background information on request.
  • Health Practitioners who have conscientious objections should be required to declare their objection if assisted dying is requested.

 

Administering the lethal dose of medication

  • The patient has undergone rigorous assessment before reaching the time of administration of the drug and has decided that that is what is wanted.  The patient has been made aware that the request may be withdrawn at any time; this includes prior to administration by the doctor who has played a major role in the assessment process.

Before the doctor administers the drug, both assessing doctors have agreed that the patient cannot self-administer the medication and that the patient will need assistance. In this case, as indicated by the Parliamentary Committee, “...a doctor should be able to assist the person to die by administering the drug”.

No additional safeguards are necessary.

  • The administration should occur at a time and place that respects the patient’s wishes but is also acceptable to the doctor.

 

Attendance

  • Any Health Practitioner whom the patient chooses should be allowed to be present at the time of self-administration but the Health Practitioner should not be obliged to attend.

 

Lethal dose of medication not effective

  • If the patient does not die after the ingestion of the drug, counselling should be repeated, after recovery, to assess the patient’s intent.  Should the patient request further VAD, it should be administered, in a higher dose, with the doctor present.

The obligation of a Health Practitioner is to respect the patient’s decision for assisted dying.  No treatment should be instigated nor an ambulance called.

  • A document should be provided by the prescribing doctor with instructions to complete immediately before ingesting the medication.  This document will state that
    • I am taking this medication voluntarily and without any other person encouraging or influencing me.
    • I understand this medication will bring about my death quickly and peacefully
    • No ambulance is to be called and no resuscitation efforts are to be made

 After a person has died

  • The doctor writing the death certificate must ascertain whether the medication was used and, if not, arrange its prompt return to the pharmacy.
  • The cause of death must be certified as the primary illness.
  • The death should be a reportable death only if the doctor has concerns about the death.

 

Oversight

  • A stand-alone independent Assisted Dying Review Board should be established with oversight and reporting powers but no investigatory powers.
  • The Assisted Dying Review Board should be provided with de-identified data as soon as a written request for voluntary assisted dying is obtained, showing
    • The diagnosis and age of the patient.
    • The details of the Primary and Secondary doctors, including confirmation that they have completed the Voluntary Assisted Dying training.
    • Confirmation that the prescribed list of information has been discussed and provided to the patient.
    • When the medication is prescribed and dispensed.
    • If and when the medication is used and the outcome.
    • Confirmation that the medication is returned to the pharmacy if it was not used.
  • The reporting should be real time via a website portal or phone.
  • The website should also contain documents and information to be provided to the patient and links to resources for information about the patient’s illness and palliative treatments.
  • Another agency should be involved only when a breach of procedure or safeguards has occurred.
  • The oversight body should not have investigatory powers. If investigation is needed, this should be done by the appropriate investigative agency.
  • Either of the assessing doctors should be able to consult with a member of the board at any stage during the process if they have any questions or concerns about the assessment or process of voluntary assisted dying.

 

Additional safeguards

  • The parliamentary committee's framework provides sufficient protection to vulnerable people.
  • No additional safeguards are necessary.

 

Liability and Insurance

  • Health practitioners who act in accordance with the new legislation in good faith and without negligence should be immune from any legal liability.
  • Insurance companies should act with the cause of death as recorded on the death certificate – not as suicide. They should not have access to information from the Assisted Dying Review Board.

 

Conclusion

  • We are not aware of any further issues related to the Parliamentary Committee's recommended framework that require the Ministerial Advisory Panel's consideration?

 

Yours sincerely

 

Dr Doug Gaze and Victorian Convenors Group

And

 Names of members here

 

 


 

 

Doctors for Assisted Dying Choice

 

 

 24A Renown Av

 Tranmere SA 5073

 

  08 8431 9134

 

 24 July 2015  

  

 Lilian Topic

 Secretary

 Legal & Social Issues Committee Parliament House

 Spring Street, Melbourne VIC  3002

 

 Dear Ms Topic

Re: Submission – Inquiry into End of Life Choices

In Australia the ability of a person to exercise a preference in end of life choices is constrained by factors not freely or easily controlled by that person, such as location of the person’s domicile, type of illness, medical practitioner attitude, legal inconsistencies  and religious pressure.

 

Location

Location plays a major role in limiting access to specialist palliative care for the optimal management of end of life care.  Palliative care services and practitioners are concentrated in major cities and less well represented in distant townships and country areas.  The provision of on-line consultation allows some alleviation of this divide but is not a completely satisfactory alternative to that provided by face-to-face, experienced carers.  Choice of institutional care options is likely to be similarly reduced.

 

Restrictions on provision of terminal medical care 

It is acknowledged that even with optimal palliative care availability, 5-10 % of patients continue to experience inadequate relief of their suffering.  Current medical practice fails these people.  This is the group who will receive relief of their suffering only by death; but it is this group whose achievement of the desired relief is somewhat of a lottery and dependent on the medical practice of their care givers.

 The Palliative Care Council makes the statement that voluntary euthanasia and assisted death are not part of palliative care.  This claim is rational; if voluntary euthanasia or assisted death were practiced openly as part of palliative care, palliative care givers would be acting illegally.

 The appropriate use of drugs for symptom control is an established and effective part of palliative care.  When large doses of sedatives are used in the presence of refractory symptoms, the practice becomes terminal sedation: the end point is death of the patient.  The essential difference between the administration of drugs to achieve euthanasia or to undertake terminal sedation is the intent of the doctor responsible for the procedure.  Even when requested by the patient, intending to end a life by terminal sedation is illegal: administering drugs sufficient to control symptoms, which may result in the death of the patient, is not illegal.  The end point of each procedure is the same: the legality or not is based on the intent of the medical practitioner which can be known only to each practitioner at the time.

It is recognized that a few medical practitioners do agree with a patient’s rational request to end suffering by administering drugs in sufficient concentration to control symptoms by the ending of the patient’s life.  This practice requires both subterfuge and personal courage on behalf of the practitioner: it persists in the face of its illegality because it has ethical impetus, a feature to which current laws are blind. 

 Type of illness

A person’s ability to achieve assistance in obtaining relief of intolerable suffering may depend on his or her type of illness.  The consensual withdrawal or removal of life sustaining treatment from a patient is legal, even if this action results in the patient’s death. The consensual administration of drugs to a patient not dependent on life support, is illegal.  The inconsistency of the legal illogicality is obvious and discriminatory.

 Continued Religious Influence

Within the community there exists a small, vocal and strong opposition to assisted death and voluntary euthanasia on the basis that human life is sacred and divinely given.  In general these groups are well supported by various religious bodies, which allow them to exert political influence disproportionate to their numbers and to maintain the limitations on assisted death as a choice at the end of life: a choice which is favoured by more than 75% of the Australian community in general. A similar number of people professing a religion see voluntary euthanasia as consistent with their faith.   Australia has become a secular society, but a society in which the freedom to practice personal and religious beliefs is retained and respected.  The maintenance of law based on the beliefs of a selected, but disproportionally influential few, significantly reduces choice in end of life care for the majority and is implicitly undemocratic.

 

Increase in end of life choices

Currently many Australians die in unsatisfactory circumstances and with unrelieved suffering.  We have outlined areas which limit the provision of optimal choice of care at the end of life.  Some are location dependent and difficult to solve but the salient restriction which can be addressed and which is desired by most of the Australian community, is the removal of the undemocratic legislation prohibiting voluntary euthanasia and assisted death as a choice in end of life care.  The essential element in any liberalisation of the law is that of personal choice.

  Yours sincerely

 

Associate Professor Arnold Gillespie

and 97 members

 

 


 

 

3 May 2014

 

The Editor 

Sydney Morning Herald

 

 Frustrated at the failure of parliamentarians of all States to enact legislation to allow voluntary euthanasia in defined circumstances, Dr Rodney Syme has courageously elected to make public his role in the death of Steve Guest, in 2005 (SMH 28 April 2014).  Dr Syme has taken this brave course to force police action, which is likely to result in judicial activity, in the hope that a Court decision might facilitate parliamentary action.  The undersigned members of Doctors for Assisted Dying Choice applaud the action of Dr Syme and strongly advocate the modification of the law in all States to permit voluntary euthanasia and physician assisted dying in legally defined circumstances.

 

 We also challenge the ill-informed view that all doctors are opposed to voluntary euthanasia. Currently it is illegal for a doctor to even sit with a terminally ill person with intolerable symptoms who has decided to terminate his or her life.  We believe that assisting people with intolerable symptoms, who have made an informed decision to die, is the ultimate compassionate, palliative care action. 

 

Sincerely

Doctors for Assisted Dying Choice

 

 

 ---------------------------------------------------------------------------------------------------------------------------------------------------------------------

 

2 May 2014

 

The Editor, The Age

Dear Sir/Madam,

 

The undersigned doctors write in support of Dr Rodney Syme who has admitted his part in the death of Steve Guest in 2005.  Steve Guest died by his own hand, using a drug supplied by Dr Syme.  The Police decided that no action was required but now are likely to investigate, given further information supplied by Dr Syme.  Given the failure of legislatures to enact permissive legislation, Dr Syme has concluded that a favourable judicial conclusion may influence the Parliament to take action.

 We write also to contradict the ill-informed belief that doctors are opposed to liberalisation of the law.   We strongly support the modification of the law to permit voluntary euthanasia and physician assisted dying in legally defined circumstances.  We favour a legal framework in which decisions to end life are entirely patient-centred and not reliant on the views of a doctor.  We are appalled that currently it is illegal for doctors to even sit with a terminally-ill person with intolerable symptoms, who has decided to take his or her own life.  End-of-life assistance in whatever form should be a final, compassionate act of palliative care and should be legal. 

Yours sincerely

 Doctors for Assisted Dying Choice

 

 


 

 

Letters to South Australian parliamentarians

 

 Doctors for Assisted Dying Choice

 

 

25 October 2013

 

Hon «FirstName» «LastName» MLC

Parliament House

Adelaide SA 5000

 

  

Dear «Title» «LastName»

 

As a national medical group we aim to provide our elected representatives with updates of worldwide developments in end-of-life thinking. Accordingly, from time to time we will send you quotations from respected medical journals, with the references, so that the full articles may be obtained.

 

Quote No. 6:

  

“There is evidence of advancement of palliative care in countries with legalised euthanasia, also after the legalisation of euthanasia and/or assisted suicide. The idea that legalisation of euthanasia and/or assisted suicide might obstruct or halt palliative care development thus seems unwarranted and is only expressed in commentaries rather than demonstrated by empirical evidence.”

 

Legalisation of assisted dying does not harm palliative care, study concludes.

 

Dyer C. British Medical Journal 2011; 343: d6779  

Commenting on: Palliative Care Development in Countries with a Euthanasia Law. Report for the European Association for Palliative Care; October 4, 2011. 

 http://www.commissiononassisteddying.co.uk/wp-content/uploads/2011/10/EAPC-Briefing-Paper-Palliative-Care-in-Countries-with-a-Euthanasia-Law.pdf

 

We, the South Australian members of Doctors for Assisted Dying Choice, continue to urge you to respect the views of the majority of your electorate in support of the Ending Life with Dignity Bill 2013.

 

Yours sincerely,

(Signed by South Australian Members)

 

 

Doctors for Assisted Dying Choice 

 

 

17 October2013

 

 

Hon «FirstName» «LastName» MLC

Parliament House

Adelaide SA 5000

 

 

 

Dear «Title» «LastName»

As a national medical group we aim to provide our elected representatives with updates of worldwide developments in end-of-life thinking. Accordingly, from time to time we will send you quotations, with the references, so that the full articles may be obtained.

 

Quote No. 5:

 

“Making someone die in a way that others approve, but he believes a horrifying contradiction of his life, is a devastating, odious form of tyranny.”

 

 

Ronald Dworkin, QC

 

Emeritus Professor, University College London

Previously – Chair of Jurisprudence, Oxford University. Fellow of University College Oxford.

Professor of Jurisprudence, University College, London. Professor of Law, New York University.

 

 

Dworkin died of leukaemia in London on February 14, 2013 at age 81.

 

Faculty of Law News (Oxford) http://www.law.ox.ac.uk/newsitem=537

 

Orbituary The Guardian 14 February 2013. http://www.theguardian.com/law/2013/feb/14/ronald-dworkin

 

Obituary NY Times 15 February 2013. http://www.nytimes.com/2013/02/15/us/ronald-dworkin-legal-philosopher-dies-at-81.html?_r=0

  

 

We, the South Australian members of Doctors for Assisted Dying Choice, continue to urge you to respect the views of the majority of your electorate in support of the Ending Life with Dignity Bill 2013.

 

 

Yours sincerely,

(Signed by South Australian Members)

 

 

Doctors for Assisted Dying Choice

 

1 October 2013

 

 Dear…appropriate addressee

 

 

As a national medical group we aim to provide our elected representatives with updates of worldwide developments in end-of-life thinking. Accordingly, from time to time we will send you quotations from respected medical journals, with the references, so that the full articles may be obtained.

 

Quote No. 4:

 

 

“Despite the huge progress made in palliative medicine in terms of symptom control, many are intractable (refractory symptoms), either because the treatment is ineffective or because the treatment itself is intolerable”

 

 

 

Palliative Sedation in End-of-Life Care and Survival: A Systematic Review

 

M Maltoni, E Scarpi, M Rosati, S Derni, L Fabbri, F Martini, D Amadori, and O Nanni.

 

Journal of Clinical Oncology, 2012; 30:1378-83.

 

 

We, the South Australian members of Doctors for Assisted Dying Choice, continue to urge you to respect the views of the majority of your electorate in support of the Ending Life with Dignity Bill 2013.

 

Yours sincerely,

 

(Signed by South Australian Members)

 

 

 

Doctors for Assisted Dying Choice

 

29 September 2013

 

Dear...appropriate addressee

 

As a national medical group we aim to provide our elected representatives with updates of worldwide developments in end-of-life thinking. Accordingly, from time to time we will send you quotations from respected medical journals, with the references, so that the full articles may be obtained.

 

Quote No. 3:

 

"... our Death with Dignity program has been well accepted by patients and clinicians….

…..[it] allows patients with cancer who wish to consider this option to do so within the context of their ongoing care and accommodates variation in clinicians' willingness to participate”

 

Implementing a Death with Dignity program at a comprehensive cancer center.

Loggers ET, Starks H, Shannon-Dudley M, Back AL, Appelbaum FR, Stewart FM.

N Engl J Med. 2013; 368(15):1417-24. doi: 10.1056/NEJMsa1213398.

 

We, the South Australian members of Doctors for Assisted Dying Choice, continue to urge you to respect the views of the majority of your electorate in support of the Ending Life with Dignity Bill 2013.

 

Yours sincerely,

(Signed by South Australian Members)

 

 

Doctors for Assisted Dying Choice

 

 

 

16 September 2013

 

  

Dear...appropriate addressee

 

As a national medical group we aim to provide our elected representatives with updates of worldwide developments in end-of-life thinking. Accordingly, from time to time we will send you quotations from respected medical journals, with the references, so that the full articles may be obtained.

 

Quote No. 2:

 

“That there is a moral right, grounded in autonomy, for competent and informed individuals who have decided after careful consideration of the relevant facts, that their continuing life is not worth living, to non-interference with requests for assistance with suicide or voluntary euthanasia.”

 

Quotation from: Section 8, Conclusions. End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making 

Bioethics. 2011 November; 25(Suppl 1): 1–4.doi: 10.1111/j.1467-8519.2011.01939.x

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265521/

 

We, the South Australian members of Doctors for Assisted Dying Choice, continue to urge you to respect the views of the majority of your electorate in support of the Ending Life with Dignity Bill 2013.

 

 

 

Yours sincerely,

(Signed by South Australian Members)

 

 

 

Doctors for Assisted Dying Choice

 

 

 

9 September 2013

 

Dear...appropriate addressee

 

As a national medical group we aim to provide our elected representatives with updates of worldwide developments in end-of-life thinking. Accordingly, from time to time we will send you quotations from respected medical journals, with the references, so that the full articles may be obtained.

 

Quote No. 1:

 

“The consistency of international views indicates a mandate for legislative and medical systems worldwide to listen and understand this.”

 

Quotation from: Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.  

Hendry M, Pasterfield D, Lewis R, Carter B, Hodgson D, Wilkinson C. Palliat Med. 2013;27:13-26. doi: 10.1177/0269216312463623

 

We, the South Australian members of Doctors for Assisted Dying Choice, continue to urge you to respect the views of the majority of your electorate in support of the Ending Life with Dignity Bill 2013.

 

 

Yours sincerely,

(Signed by South Australian Members)

 


 

11th August 2010

Dear [Politician Name],

Re: Recent findings in Voluntary Euthanasia

This letter addresses a frequent concern that legislators express in regard to VE, known as the "slippery slope". This is the idea that an act to legalise VE which in itself may not be ethically repugnant or illegal on a small scale, will lead to an unacceptable increase in the use of VE and even the ending of a person's life against their wish.

We draw your attention to information we have taken from the website of the Department of Human Services, Government of Oregon reporting the experience of legalised VE in Oregon, USA.

Last year there were 19.3 physician-assisted deaths per 10,000 total deaths (0.19%). This is the rate after 12 years of legalized physician-assisted suicide, and represents a total of 59 deaths out of 30,000 deaths in 2009. As in previous years, more individuals were legally prescribed lethal drugs than actually took them (see figure in appendix).

Thus, the incidence of VE remains very low, the overall increase is slight, consistent with gradual acceptance by a society that physician-assisted dying legislation is compassionate, and the un-used prescriptions point to patients not being pressured, or forced, to take that option.

This is an excellent example of evidence refuting the idea of a 'slippery slope' of run-away euthanasia. We are happy to respond to any questions you may have.

Yours sincerely

John Willoughby—for the group

 

Appendix: The Oregon voluntary euthanasia experience from 1998 to 2009.

 

The Oregon voluntary euthanasia experience from 1998 to 2009

 


Letter to Editor of the Adelaide Advertiser

10th September 2011

With the introduction of the legislation proposed by Hon Ms Steph Key and The Hon Dr Duncan McFetridge we are at a critical point in our society's approach to end-of-life matters. The effect of the proposed legislation will be that un-relievably distressed adults may request medical assistance that would shorten their lives. At present, a doctor acting on such a request could be charged with murder: this proposed Bill seeks to provide medical carers with a defence against such a criminal charge.

The two of us are members of a national group of 127 doctors and specialists. We write on their behalf to both support and to criticize the Bill. We support it for the diminished threat of compassionate medical carers being charged when they respond to a request for assistance at the end of life. We criticize the Bill because patients who make a decision to have assistance to end their life, deserve to have their decision supported by law and we still seek to achieve this. We cannot conceive a rational basis for opposing such assistance and we are perplexed by minority groups who do oppose it.

In the meantime, the Key/McFetridge Bill has our support. Medical carers regularly deal with difficult life and death decisions in which the patient's opinion is pre-eminent. The Key/McFetridge Bill will, for the first time in SA, enable effective open communication at what is a very sad time for all involved and provide one more option for suffering individuals.

With best wishes

Dr Rosemary A Jones         Emeritus Professor John Willoughby

Writers for members of Doctors for Assisted Dying Choice

 

Letter to SA Parliamentarian, Dr Bob Such

Dr Bob Such

Member for Fisher

Parliament House

Adelaide SA 5000

Dear Dr Such

We are doctors from all Australian states who have recently joined forces in the cause to legalise voluntary euthanasia.  Our website can be found at drs4assisteddyingchoice.org

We strongly support your stance on this cause, which we all recognise is supported by the most powerful of ethical arguments.  We do feel, however, that aspects of your Bill will preclude several groups of patients whose medical indications for requesting an assisted death are equally as strong ethically as patients who are the focus of your Bill. 

While those with advanced cancer, who are in pain and in the terminal phase of terminal illness, would benefit from the passage of your Bill, individuals who are suffering unbearably from permanent deprivation of their vital functions deserve the right to request a peaceful end-of-life; these functions would include the capacities of secure breathing, eating, drinking, and self-care.   You, yourself, have indicated in the SA Parliament that the provisions of your Bill will be utilised no more than rarely. We have the view that the exclusion of unbearably distressed individuals who have fixed, non-fatal or slowly destructive illnesses, will be seen to be arbitrary compared to the compassionate options your Bill will provide for those with end-stage cancer.

We will, of-course, provide a supportive medical campaign for your currently proposed Bill, as exclusionary as it is.  However, we would make the strongest of public efforts to achieve reform that gives choice to patients on the basis of even-handedness in the face of equivalent medical need.

As representatives of Doctors for VE Choice, Drs Rosemary Jones, Arnold Gillespie and John Willoughby would appreciate the opportunity to meet with you to discuss these matters.  Would you kindly advise us if you are receptive to discussion, and if so, suggest a time for meeting?

Yours sincerely

[This was signed by over forty doctors from Doctors for Assisted Dying Choice]

 

 


 

Join up in just two minutes here...