October 3, 2016

bench in focus

With advances in medical research and treatments, we are living longer.  But for some of us, there is a disconnect between life and quality of life.  The following is an extract from an academic paper I prepared in September 2015.  In the paper I considered the first 700 submissions to the Australian state of Victoria’s inquiry into end of life choices.I do not propose to have all the answers, but surely, in 2016, it is time to have a grown up discussion on Euthanasia. I look forward to your feedback.

‘It was once said that the moral test of Government is how that Government treats those who are in the dawn of life the children, those who are in the twilight of life, the elderly and those who are in the shadows of life, the sick, the needy and the handicapped.’ Hubert Humphrey (Bates-Froiland, 2003, p. 178)

‘I swear by Apollo the physician … Nor shall any man’s entreaty prevail upon me to administer poison to anyone; neither will I counsel any man to do so …’ (Copland, 1825)

‘There are some things that are worse than death … I want to choose when to go.’ Lawrie Daniel, multiple sclerosis sufferer (White, 2015)

Current end-of-life social policy has failed in its implementation in Australia.

It has failed

  • medical professionals who are limited in legally permissible options;
  • those in the shadows of life who are prohibited from choosing the time, the place and the method; and
  • those who love and care for them.

This paper describes the current state of legal end-of-life choices in Australia and the recent attempts to change them. As a complex problem, two discrete arguments are (as at September 2015) being considered by the Victorian Parliamentary Review into the End of Life Choices: those arguing for physician-assisted suicide (PAS) and those who argue that PAS is murder; and palliative care is sufficient if funded appropriately.  This paper summarises the debate and uses the submissions to the Parliamentary Review as context for the enduring policy issues.

’Physician-assisted suicide is provision of a lethal prescription by a physician to a patient for the specific purpose of ending the patient’s life’ (Voltz, 2004, p. 373).

If it is accepted that the current implementation has failed, then a new policy must be offered.  If implementation is a process, then it is appropriate that a stepped or considered approach be taken to a new policy.  This paper suggests the Council of Australian Governments agree to seek a true mandate through a referendum or plebiscite.  That if Australians support the principle of physician-assisted suicide, then legislation, policy and procedures be developed through genuine codesign with stakeholders, including those with chronic conditions, their advocates, carers, medical professionals, social workers and religious organisations.

Opponents to PAS cite palliative care as an appropriate end-of-life option however that it requires to be funded at an appropriate level.  This paper agrees and recommends increased funding in order that palliative care providers can meet current benchmarks as minimum standards.

Australians deserve a mature discussion on the role of government in prescribing how citizens can manage their own end-of-life choices, and how to protect the medical and social welfare professionals to support those choices within a legal framework.

Enduring issue

‘A good death is one in which a person dies on his own terms, relatively free from pain, in a supported and dignified setting’. (Repa, 2007) ​​ In 2012, of the 147,098 deaths in Australia, 42,961 related to cancer, 6,582 to diseases of the nervous system (including Parkinsons, and Alzheimers) and 7,211 were dementia related (Australian Bureau of Statistics, 2012).

Unlike other enduring social policy issues with constantly changing regulations, there is little political appetite to legalise PAS, leaving those who desire the autonomy to design ‘how their story ought to end’ with two legal options:

  • Suicide. There are two risks to suicide. Firstly that it may be unsuccessful yet leaving the individual with greater medical issues. Secondly the legal risk to family as accessory to suicide.
  • Refusal of food and water.  Death through starvation and dehydration (voluntary palliated starvation or VPS) is legally permissible. Implementation inconsistencies may or may not provide palliative care including pain relief.

The current ‘top down’ framework is based on a paternalistic, protectionist legislation that views PAS as ‘murder’ and in contravention of human rights and medical profession obligation to do no harm.

The current policy discussion is further complicated with opponents of PAS foreshadowing a ‘slippery slope’ towards reduced government funding of genuine palliative care options, and medical research as it becomes easier and socially acceptable that individuals have a notional ‘use by date’.

If one is to agree with Mosse that implementation is a process, the process towards PAS has commenced (Mosse, 2004). The Northern Territory allowed citizens the legal right to PAS before overriding legislation was passed by the Commonwealth Government (which can legislate on behalf of the territories).  Tasmania and South Australia have come close, but current eyes are on how the Victorian State Government responds to its Parliamentary Review into End of Life Choices.

[Update December 2016 - South Australia narrowly defeated legislation for PAS. Victoria is now looking to introduce legislation]

To design an end-of-life choice policy that includes PAS, one must consider the enduring issues of:

  • Palliative care
  • Human rights
  • Public opinion versus parliamentary debate
  • Stakeholder views
  • Risks and opportunities for change

‘If what makes life a good story is happiness or the pursuit of projects, then a long, drawn out ending without either is a bad end of what may have been a good story’ Michael Bayles quoted in his obituary after committing suicide in 1990 aged 49 (Robinson, 1993).

Palliative care:  is it enough?

​​ The World Health Organisation defines palliative care as an approach intended to ‘improve the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’ (Australian Institute of Health and Welfare, 2014, p. 1).

It is an important and valued end-of-life option in Australia.  In 2012, 30,405 patients received palliative care services provided by an estimated 148 specialist palliative physicians (Australian Institute of Health and Welfare, 2014, pp. 63, 67).

Of the first 700 submissions to the Victorian Parliamentary Inquiry into End of Life Choices, 119 cited the value of palliative care and sought greater funding (and quality) (Parliament of Victoria, 2015). 

In its submission, Palliative Care Australia stipulated that ‘dying is a natural part of life, and declining or withdrawing aspects of treatment is acceptable if it aligns with the informed wishes of the patient’. Further, that ‘end of life, that quality care is a basic human right and (be) sufficiently resourced’ (Palliative Care Australia, 2015).

Of the 43,265 palliative care-related prescriptions provided to 22,287 patients in 2012-13, laxatives were the most commonly prescribed (37.3 per cent) followed by analgesics (26.6 per cent). (Australian Institute of Health and Welfare, 2014, p. 53).  Of the 10,295 scripts for pain relief, 60.6 per cent related to paracetamol with 3,746 relating to opioids.  Only 307 of the 2,754 repeat scripts were for opioids. (Australian Institute of Health and Welfare, 2014, p. 57)

A set of national palliative care outcome benchmarks were established in 2009.  The following indicates benchmark scores in 2013:

  • Time to receive palliative care: 66.3% against benchmark of 90%
  • Time patient spent in an unstable phase: 22.4% against benchmark of 90%
  • Change in pain.  There are two key Benchmarks:  90% of phases that started with absent/mild pain remain in absent/mild pain at the end of the phase.  In 2013, only 32.7% of services and 53.6% of patient phases met this benchmark.. 60% of patients have moderate/severe pain reduced to absent/mild pain at phase end. Only 27.0% of services and 49.8% of patient phases met this benchmark. (Australian Institute of Health and Welfare, 2014, p. 78)

This data demonstrates that palliative care is an important and utilised end-of-life choice. It provides a range of valued specialist medical and social welfare services.

However, even against own benchmarks, palliative care is failing its patients. Lack of effective pain relief during end of life care was a frequent comment within submissions to the current Victorian Parliamentary Inquiry.

Human right to die?

International perspectives are provided by the World Health Organisation, European Convention on Human Rights and the International Covenant on Civil and Political Rights.  All oppose the right to physician-assisted suicide: The World Health Organisation recommends that member states ‘ not consider legislation allowing for physician-assisted suicide (PAS) or euthanasia until they have assured for their citizens the availability of services for pain relief and palliative care’ (Voltz, 2004, p. 373). European Convention on Human Rights, Article II ‘no one shall be deprived of his life intentionally’ (Voltz, 2004, p. 373)

The International Covenant on Civil and Political Rights (ICCPR) Article 6.1 ‘every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life’ (United Nations Human Rights, 1976). It is argued that Australia has an established and mature palliative care option; and that prolonged suffering is in contravention of Article 7 ‘no one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment’. (United Nations Human Rights, 1976).

Academics are divided. Werren and Bartels cite autonomy, public opinion and the benefits in legalising a currently less controlled environment. (Werren, 2012) (Bartels, 2010). In reply, Prichard considers pressure that may be applied to vulnerable patients to end their lives prematurely, conflict for the medical and justice systems and the slippery slope to non-voluntary euthanasia (Prichard, 2012).

Australians voice?

ABC Vote Compass surveys voters prior to state and federal elections. Surveys have consistently asked whether ‘Terminally ill patients should be able to legally end their own lives with medical assistance’. Between 72 and 75 per cent of respondents strongly agreed or agreed with the proposition in 2013 (federal), 2014 (Victoria), 2015 (NSW and Queensland)  (Australian Broadcasting Corporation, 2015).

Bartels notes that ‘public support for legalisation could never of itself be sufficient for reform of the law: indeed, public opinion may be misguided or misinformed or may have failed to take into account the fully implications of legislation.’  However, Bartels further states that ‘the law must serve the community and should therefore be responsive to real social needs.’ (Bartels, 2010)

Politically, the Liberal Party of Australia, National Party and Labor Party oppose euthanasia. While professing to allow members of parliament a conscious vote, the Victorian experience in 2006 was that the then Premier rescinded permission and voted as a block to refer the proposed Medical Treatment (Physician Assisted Dying) Bill 2008 (Vic) to a parliamentary committee for review and changes.

Attempts to introduce legislation include:

Commonwealth: Criminal Code Amendment (Suicide Related Materials Offences) Bill 2004; Euthanasia Laws Act 1997 (repealed Northern Territory legislation) Northern Territory:  Rights of the Terminally Ill Act 1995 (repealed by Commonwealth) Tasmania:  Dying with Dignity Bill (2009); Voluntary Assisted Dying Bill 2013 (defeated 12-13 in 2013) Western Australia: Voluntary Euthanasia Bill 1997 South Australia:  Ending Life with Dignity Bill (2013); Previous attempts:  2012, 2011, 2010 (x3), 2008, 2007, 2006, 2005, 2002, 1996, 1995 Victoria:  Medical Treatment (Physician Assisted Dying) Bill 2008 Australian Capital Territory:  Medical Treatment (Amendment) Bill 1995

Based on readings of the parliamentary and news debates surrounding these failed bills, legislative changes have not been pursued due to:

  • lack of appropriate oversight protections (that protect the vulnerable and avoid the slippery slope);
  • eligibility criteria (that empowers the terminally ill, yet protects those suffering from mental illness)
  • residential concerns (that legislation supporting PAS by one jurisdiction may encourage ‘death tourism’)
  • Religious grounds (including potential electoral backlash from the Christian and Jewish lobby groups).

The result is that three of the four major political parties in Australia oppose allowing citizens the autonomy of choice despite repeated and consistent public support. 

Recent Inquiry into End of Life Choices

On 7 May 2015, the Parliament of Victoria, Australia invited submissions to the Inquiry into End of Life Choices.

The Terms of Reference seeks to consider the practices currently utilised by medical community for end of life – including palliative care; the legislative framework; and consider legislative changes (state and federal) that may impact. (Parliament of Victoria, 2015).

This is the most current government attempt to understand views of stakeholders.  Of the 700 initial submissions:

  • 445 supported unconditional euthanasia and 14 supported conditional euthanasia
  • 19 also supported greater palliative options
  • 115 personally wanted the right to choose and 38 have a current medical concern
  • 155 personal recollections of death ‘without dignity’ of a loved one
  • 228 opposed to euthanasia:
  • A total of 92 (including 53 chain emails) expressed concern for the vulnerable; 40 likened euthanasia to murder; and 22 invoked God or religious reasons.

73 submissions citing medical experience were received.

  • 37 in support
  • 8 had watched and/or cared for a loved one to end of life; and
  • 2 have their own terminal illness;
  • 31 oppose euthanasia, none of whom had cared for a loved one
  • 1 has a current medical issue;
  • 23 recommended greater palliative options.

Within stakeholder groups there are opposing views

Medical Profession (care including social workers)

The AIHW estimates 148 palliative care specialists in Australia in 2012 (Australian Institute of Health and Welfare, 2014).

In its submission to the current Victorian Parliamentary Inquiry, Doctors Opposed to Euthanasia agree that end of life care can be improved.  However legalised euthanasia would ‘irreversibly and deleteriously change our society’s approach to ageing, dying, suicide and disability’.  (Doctors Opposed to Euthanasia, 2015).

Even opponents of physician assisted suicide admit to increasing medication that eased symptoms yet bought about death (Turner, 2015). Bartels cites reports where ‘approximately one-third of the respondent doctors reporting that they had at some stage provided such assistance.’ (Bartels, 2010)

Of the 37 submissions in support of PAS by medical professionals, Dr Julia Anaf seeks an alternative to the existing ‘pre-emptive suicide’ and ‘mercy killings’ which she seeks as a tragic consequence of the legal status-quo (Anaf, 2015).

As a registered nurse, Andrea Buckley described her struggles to support each of her parents and her husband through their end of life care and expressed concern at how those without knowledge of the medical system could support their loved ones (Buckley, 2015).

In his submission, Dr Rodney Syme considered changing medicine practices since 1959 and states: ‘although medicine was changing radically, the law affecting doctors’ actions at the end of life remained vague and uncertain – doctors have no special protection, and so their patients have no protection in achieving the care that they might want’. (Syme, 2015)

Patients

Of the submissions in support of PAS, 115 sought it as an option for themselves. While some elderly individuals cited not wanting to experience a ‘bad death’ similar to witnessed amongst their peers. Patients seek alternatives to voluntary palliative starvation and palliative care with safeguards for those deemed vulnerable to abuse.

‘I was full of youth and health when I was conscripted into the army and sent to where I could easily have died. But the government willing to send me to my death when life was important refuses to let me kill myself when I want no more of life’ (Wilce, 2015)

Raymond Godbold, a 59 R.N Division 1 nurse with 34 years experience with palliative patients was diagnosed with malignant, disseminated Gastro-Oesophageal cancer Stage 4 in May 2012.  ‘It is my experience that I will have a very difficult and unpleasant death under the current palliative care guidelines and pathways.  I have been attendant at many deaths and I myself do not want to spend days in bed being totally dependent receiving Morphine and Midazolam keeping me sedated whilst my body wastes away with my family in attendance.’ (Godbold, 2015)

Patient Family

Each of the 155 personal recounts from carers and loved ones sought alternatives to palliative care.  Some recounted the lonely suicides of loved ones, others recounted the painful death of their loved ones who had begged for a quickened death.

Geoffrey Hookey’s 86 year old wife took a legal dose of pentobarbitone in November 2014, alone in her bed, leaving behind notes absolving anyone from involvement. Despite this, the widow and his children remain subject to a police investigation.  His submission concluded ‘Our parliament should enact responsible legislation to ensure that those rational persons who have made a reasoned end of life choice, can do so in humane and loving circumstances.’ (Hookey, 2015)

These submissions do not seek to invoke PAS as a first solution.  Rather to have a choice. As Elizabeth Short recounts ‘Peter had the means and the knowledge to end his own life. That information enabled him to put the fear around the dying process aside. It allowed him to fully enjoy the months left to him – working, holidaying and sharing this precious time with family and friends. At the end he chose not to take that option, which I understand is common among terminally ill people who have the ability to do so. He instead allowed his dying to unfold in the secure and caring hospice environment.’ (Short, 2015)

Risks and Opportunities for Change

In the absence of an existing governance structure, or the opportunity to bring all stakeholders together for risk workshops, the ‘top five’ risk statements are drawn from concerns raised by PAS opponents and intended as discussion starters during the proposed codesign of principles and legislation.

In addition to the better practice approach of considering risk controls and treatment measures; it is recommended that stakeholders consider two additional elements which are sampled in the first risk statement: Proximity of risk – When would the risk be likely to occur, if it was to occur? 

Early warning indicator of risk – What is the earliest warning that the risk may materialise.  This provides the governance with measures to track. Risk 1:             That restrictive euthanasia policies such as PAS will lead to risk of abuse and non-voluntary euthanasia PAS may lead to a ‘slippery slope’ with human life de-valued; vulnerable individuals pressured into euthanasia; or decisions taken by family for profit or gain.  Note there are already concerns regarding elder abuse and abuse of disabled and disadvantaged.  This risk considers the delta between current legislation and PAS.  There is an opportunity in drafting legislation to address existing abuse concerns. Proximity of risk:  From drafting legislation and ongoing. Early warning indicator of risk:  Feedback from stakeholder groups; qualitative research involving observation and interviews with terminally ill patients and those with life-threatening illnesses. Controls:  Existing legislation for murder, attempted murder. Treatments:     Legislation drafting to ensure PAS is strictly regulated and only available in strictly defined circumstances, including independent assessment; capacity to consent; medical condition, prognosis and options pursued. Appropriately funded palliative care and respite care options. Legislate that procuring a signed request for voluntary euthanasia through deception or improper influence an indictable offence.

Risk 2:             That public perception and confidence in the medical profession will be decreased due to conflict between ‘do no harm’ and PAS. Potential Treatment:    Legislation drafting ensures the right of patients to PAS, but also ensures the right of medical profession (including nurses, social workers and advocacy workers) to refuse PAS on moral or ethical grounds.  That procedures be co-designed with all stakeholders that upholds the integrity of the medical profession.

Risk 3:             That medical and/or social work specialists deny PAS to a patient who seeks PAS on moral or ethical grounds. Controls:         Patients are currently able to seek second opinions and change providers. Potential Treatment:    That through legislation, policy or process, patients are advised at the earliest possible opportunity where their medical providers will not provide PAS.

Risk 4:             Political risk of supporting PAS. Treatment:       That public support be validated by referendum/plebiscite.  That a Consultative Board be established with eminent stakeholders to provide advice to Government. That political parties provide bi-partisan support for enacting legislation.

Risk 5:             That palliative care funding be reduced or restricted due to PAS as an end-of-life option. Treatment:       An improved palliative care funding package be attached to PAS. Proposal - An Improved Approach to End of Life Care in Australia:  ​​   Collectively, this package will provide greater certainty of funding and quality of palliative care services as primary provision of care to the terminally ill.  It provides an approach to validate views of Australians towards physician-assisted suicide through a referendum/plebiscite and brings stakeholders together to design a principles-based approach to PAS prior to inviting public discussion. 

Pending outcome of the referendum/plebiscite, the public will be invited to discuss the high-level principles which will then inform legislation, policies and procedures. That Australians be asked via referendum/plebiscite whether Government should or should not pursue physician-assisted suicide as a legal end-of-life option

That in preparation of the referendum/plebiscite, a Consultative Board reporting to the Council of Australian Governments be established to facilitate the referendum and principled-based discussion.  That the Board include representatives of Government; medical and palliative care professions; advocacy groups representing cancer, degenerative and neurological diseases, and mental health; advocacy groups and individuals with pro-PAS views and those representing seniors, carers and the aged.  That the terms of reference charge the Board to consider and agree high level principles that would inform legislation if physician-assisted suicide is endorsed by the Australian public. (That is, if PAS were to be legalised, what would it look like.) Such principles could include What appropriate oversights protections are required to protect the vulnerable (including the elderly and those suffering mental illness); Eligibility criteria (including independent medical assessments; the extent to which palliative and other options must be first pursued; and residential); Empowers and protects the individual to withdraw a request to PAS;

Medical protocols for PAS (including approved end-of-line implementation procedure and medications; handover between palliative care services and PAS, protection for medical and associated service providers who decline to provide PAS based on religious, ethical or moral grounds); and Insurance protocols that differentiate between PAS and suicide; and do not reduce financial support for palliative care. Appropriate governance, evaluation and review mechanisms for PAS.

That the Board consider lessons learned from international experience of PAS; submissions and findings from domestic Parliamentary Reviews and existed draft legislation.

That in the event of public endorsement of PAS, that the Consultative Board use the draft principles to facilitate a principled based discussions, using social media, public hearings, public debate and written submissions. That such discussions take no less than 12 months and no more than 18 months. 

That the outcome of such discussions inform legislation to be presented to COAG for review and endorsement within 6 months and commended to (federal and state) Parliament in the next possible sitting. Implementation procedures developed by medical and associated professions, aligned with principles and emerging legislation. Establish governance and evaluation mechanisms with transparent reporting (at a local level to State and Territory parliaments; by patient cohort through advocacy groups; and at a national level). This includes provision of de-identified raw data to academics for longitudinal studies.

That irrespective of initiating a referendum/plebescite, all Australian Governments, through COAG:

  • Adopt the palliative care benchmarks as minimum standard in all publically funded medical facilities;
  • In consultation with health care providers and stakeholders, agree a funding incentive model and implementation schedule that encourages and supports private and public medical facilities meet the minimum standard;
  • In order to support palliative care resourcing in an aging society, and in consultation with health care providers and stakeholders: develop a 5, 10 and 15 year rolling demand forecast for specialist palliative care professional services (medical and social workers); and work with education facilities to offer Commonwealth funded places in order to develop capability to meet expected demand.
  • That Government fund an annual communication campaign ensuring patients, potential patients and their families are aware of palliative care options.

Summary

‘the first value held in common (between palliative care and euthanasia) is a focus on the importance of reducing human suffering’ (Mauron, 2006)

Literature review indicates concern that introduction of PAS could be to the detriment of palliative care.  By linking additional funding, support and commitment to palliative care services to a discussion and referendum/plebiscite on PAS, it is intended to demonstrate (or nudge) that end-of-life choices can include both palliative care as a first option and PAS as the option of last resort.

Despite public opinion, there is decided lack of political appetite to legalise ‘murder’.  Recommending a referendum or plebiscite and reporting to COAG will minimise the political cost to any one politician or party. 

Recommending a phased discussion period allows sufficient time for all stakeholders to inform the argument, ensure legislation, protocols and procedures are tested in an open and transparent manner.  Commencing with high level principles, and then testing them through public debate, iterations and refinements reduces the risks identified from eventuating.  Likewise, drawing on international lessons and existing draft legislation and bills enables the proposed Board to take a best of breed approach.

Finally, it must be remembered that the intent is to provide autonomy and empower people to make decisions on how their story will end.  It is not to force that choice on others, including the medical profession or associated services. 

‘I must for my dignity and for the beautiful family around me have the choice of a ‘good death’ as the term of euthanasia suggests’ (Constantine, 2015)

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