In places where it’s legal, how many people are ending their lives using euthanasia?

The Victorian Parliament will consider a bill to legalise euthanasia in the second half of 2017. That follows the South Australian Parliament’s decision to knock back a voluntary euthanasia bill late last year, and the issue has also cropped up in the run-up to the March 11 Western Australian election.

With the issue back in the headlines, federal Labor’s justice spokesperson, Clare O’Neil, told Q&A that in countries where the practice is legal, “very, very small” numbers of people use the laws.

Whether or not you agree with O’Neil’s statement depends largely on your interpretation of the subjective term “very, very small”, but there is a growing body of data available on how many people are using euthanasia or assisted dying laws in places such as the Netherlands, Belgium, Luxembourg, Colombia, Canada and some US states.

Assisted dying, assisted suicide and euthanasia

Many people use the terms “assisted dying”, “assisted suicide” and “euthanasia” interchangeably. But, technically, these phrases can have different meanings.

Assisted dying (sometimes also assisted death) is where the patient himself or herself ultimately takes the medication. Euthanasia, by contrast, is usually where the doctor administers the medication to the patient.

Assisted suicide includes people who are not terminally ill, but who are being helped to commit suicide, whereas assisted dying refers to people who are already dying. Some reports do not, however, distinguish between assisted dying and assisted suicide, and I will not distinguish them here.

In some jurisdictions, the word “euthanasia” is used to refer to both assisted dying/suicide (where the patient himself or herself takes the medication) and to euthanasia (where the doctor administers the medication to the patient). So “euthanasia” can sometimes be used as a broad term to cover a range of actions.

Euthanasia and assisted suicide rates around the world

According to a peer-reviewed paper published last year in the respected journal JAMA:

Between 0.3% to 4.6% of all deaths are reported as euthanasia or physician-assisted suicide in jurisdictions where they are legal. The frequency of these deaths increased after legalization … Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices.

The authors of that paper said that 35,598 people died in Oregon in 2015. Of these deaths, 132, or 0.39%, were reported as physician-assisted suicides. The same paper said that in Washington in 2015 there were 166 reported cases of physician-assisted suicide (equating to 0.32% of all deaths in Washington in that year).

Interestingly, the same paper noted that US data show that:

pain is not the main motivation for PAS (physician-assisted suicide)… The dominant motives are loss of autonomy and dignity and being less able to enjoy life’s activities.

The authors said that in officially reported Belgian cases, pain was the reason for euthanasia in about half of cases. Loss of dignity is mentioned as a reason for 61% of cases in the Netherlands and 52% in Belgium.

A 2016 Victorian parliamentary report has quoted from the UK Commission on Assisted Dying, which in turn referenced the work of John Griffiths, Heleen Weyers and Maurice Adams in their book Euthanasia and Law in Europe. The commission said:

There are no official data in Switzerland on the numbers of assisted suicides that take place each year, as the rate of assisted suicide is not collected centrally. Griffiths et al observe that there are approximately 62,000 deaths in Switzerland each year and academic studies suggest that between 0.3% and 0.4% of these are assisted suicides. This figure increases to 0.5% of all deaths if suicide tourism is included (assisted suicides that involve non‑Swiss nationals).

Around 3.7% of deaths in the Netherlands in 2015 were due to euthanasia. The Netherlands’ regional euthanasia review committees reported that there were 5,516 deaths due to euthanasia in 2015. That is out of a total of around 147,000 – 148,000 deaths in the Netherlands that year.

This figure represents an increase of 4% of deaths due to euthanasia compared to 2014.

A 2012 paper published in The Lancet reported on the results of nationwide surveys on euthanasia in the Netherlands in 1995, 2001, 2005 and 2010. The researchers said:

In 2002, the euthanasia act came into effect in the Netherlands, which was followed by a slight decrease in the euthanasia frequency … In 2010, of all deaths in the Netherlands, 2.8% were the result of euthanasia. This rate is higher than the 1.7% in 2005, but comparable with those in 2001 and 1995.

Another Netherlands-based study published in the journal JAMA Internal Medicine reported in 2015 that:

Certainly, not all requests are granted; studies conducted between 1990 and 2011 report rates of granting requests between 32% and 45%.

A 2015 paper in the New England Journal of Medicine about euthanasia rates in the Flanders region of Belgium (the northern half of the country) noted:

The rate of euthanasia increased significantly between 2007 and 2013, from 1.9% to 4.6% of deaths.

Filling in the bigger picture

It can be hard to put these rates in context, but what is clear is that euthanasia is by no means a leading cause of death in countries where it is legal. For example, Statistics Belgium said that for the year 2012, cardiovascular disease was the most common cause of death (28.8%), and cancer was the second most common cause of death (26%).

And in the Netherlands – where 5,516 of deaths were due to euthanasia in 2015 – more than 12,000 Dutch people died from the effects of dementia in 2014, approximately 10,000 Dutch people died from lung cancer and nearly 9,000 died from a heart attack. In 2013, 30% (about 42,000) of Dutch deaths were from cancer and 27% (about 38,000) of Dutch deaths were from cardiovascular disease.

If this article has raised issues for you or if you’re concerned about someone you know, call Lifeline on 13 11 44.

Andrew McGee, Senior Lecturer, Faculty of Law, Queensland University of Technology

This article was originally published on The Conversation. Read the original article.

The “surprise question” for predicting death in seriously ill patients: a systematic review and meta-analysis [Research]

BACKGROUND:

The surprise question — “Would I be surprised if this patient died in the next 12 months?” — has been used to identify patients at high risk of death who might benefit from palliative care services. Our objective was to systematically review the performance characteristics of the surprise question in predicting death.

METHODS:

We searched multiple electronic databases from inception to 2016 to identify studies that prospectively screened patients with the surprise question and reported on death at 6 to 18 months. We constructed models of hierarchical summary receiver operating characteristics (sROCs) to determine prognostic performance.

RESULTS:

Sixteen studies (17 cohorts, 11 621 patients) met the selection criteria. For the outcome of death at 6 to 18 months, the pooled prognostic characteristics were sensitivity 67.0% (95% confidence interval [CI] 55.7%–76.7%), specificity 80.2% (73.3%–85.6%), positive likelihood ratio 3.4 (95% CI 2.8–4.1), negative likelihood ratio 0.41 (95% CI 0.32–0.54), positive predictive value 37.1% (95% CI 30.2%–44.6%) and negative predictive value 93.1% (95% CI 91.0%–94.8%). The surprise question had worse discrimination in patients with noncancer illness (area under sROC curve 0.77 [95% CI 0.73–0.81]) than in patients with cancer (area under sROC curve 0.83 [95% CI 0.79–0.87; p = 0.02 for difference]). Most studies had a moderate to high risk of bias, often because they had a low or unknown participation rate or had missing data.

INTERPRETATION:

The surprise question performs poorly to modestly as a predictive tool for death, with worse performance in noncancer illness. Further studies are needed to develop accurate tools to identify patients with palliative care needs and to assess the surprise question for this purpose.

[Perspectives] Joan Marston: don’t forget the children

It was in the sun-dappled garden of Bloemfontein Hospice, South Africa, that Joan Marston decided to set up a hospice for children’s palliative care. She was walking with Refilwe, a baby who would die the next day. “I can still see her little eyes looking up at the trees and the light on the leaves”, says Marston, then a hospice nurse. “I remember hearing that she died and spending more time with Thabo.” Thabo, a 3-year-old orphan with HIV, was also visiting Marston for day care. “He had the most brilliant smile and just wanted to be part of everything that was going on.

AMA policy on euthanasia and physician assisted suicide – an update

The issue of euthanasia remains very much to the fore in current media, and attempts to introduce euthanasia laws continue in several states.

In South Australia, a new voluntary euthanasia Bill is currently being considered by Parliament and will be voted on as soon as this month. Pro-euthanasia MPs in Tasmania and Western Australia have indicated they will introduce legislation in the near future. The Victorian Government is due to respond by year’s end to a report on the Inquiry into End of Life Choices in Australia, which recommends the development of a legislative framework for assisted dying.

In the midst of this, the AMA’s review of its own policy on euthanasia and physician assisted suicide continues to progress. The Federal Council held a special policy session on the issue at its meeting in August, where it considered information gained from a very wide-ranging and deliberate process of member consultation, including:

the results of an AMA member survey on euthanasia and physician assisted suicide;
issues raised through this year’s AMA National Conference Q&A session on assisted dying;
member responses to the current AMA policy (undertaken last year through Australian Medicine); and
relevant background information on euthanasia and physician assisted suicide, including national and international legislative initiatives and professional and community attitudes.

At its August meeting, Federal Council recognised the diversity of member views on euthanasia and physician assisted suicide and agreed that there was a need to consult further with State and Territory AMA offices on whether the AMA’s current policy opposing doctor involvement in euthanasia and/or physician assisted suicide should be amended.

There were, however, several issues highlighted at the meeting over which there was no dispute:

access to adequate palliative care and end of life care remains inadequate throughout the country;
regardless of the final policy position, there must be appropriate funding of palliative care and greater clarity regarding legislative protections for doctors providing good end of life care for their patients; and
irrespective of whether or not euthanasia and/or physician assisted suicide become legal in Australia, it is imperative that the medical profession articulates the message that end of life care is a central responsibility of doctors, and that we will always care for patients and the broader community.

The members of Federal Council are acutely aware that this issue is sensitive and controversial, and that any decision will have potential political ramifications and consequences for health care. It is an issue on which some members have very strong views, many of which have been expressed as heart-felt and compelling arguments during the current consultation process.

However, because this is a debate about something that is very much at the core of what it is to be a doctor – that is, whether doctors should be involved in actions with a specific intention to end life – there are times when those with opposing views maybe forget the need to genuinely listen to each other. This is unfortunate when it occurs, because what has become very clear during the consultation process is that all members, whatever their views, have shown a deep dedication to the care of their patients and the welfare of the community as a whole.

So, the Federal Council’s mission is to be respectful of the views of all members, and to be understanding of the passion of those with opposing views, while seeking to find a position which is sensible and justifiable, but also reflects the unbreakable responsibility of doctors to always care for their patients.

Federal Council will continue its deliberations on a euthanasia and physician assisted suicide policy position at its upcoming meeting in November. We will keep members informed of the progress of this issue.

Hospitals could pay for mistakes

Public hospitals would be charged for mistakes that seriously harm or kill patients and penalised for avoidable readmissions under reforms being developed at the behest of Health Minister Sussan Ley.

Ms Ley has directed the Independent Hospital Pricing Authority (IHPA) to model how funding and pricing could be used to cut the cost to the Commonwealth of so-called sentinel events such as operating on the wrong body part, incompatible blood transfusions, deadly medication errors, sending a baby home with the wrong parents or patient suicide.

The Authority has also been asked to look at ways to penalise hospitals that exceed a predetermined rate for avoidable readmissions.

The move coincides with the release of draft Productivity Commission proposals to publicise treatment outcomes for individual hospitals and doctors as part of measures to boost competition and contestability in the provision of health care.

In a consultation paper released on 30 September, IHPA said that incorporating safety and quality measures into pricing and funding models signalled the value Government attached to high quality care.

“Financial incentives can encourage a strengthened focus on identifying and reviewing ways in which the safety and quality of public hospital care can be improved. This can ensure that pricing and funding approaches are aligned with other strategies to improve safety and quality,” the Authority said.

It said activity-based funding was often criticised for emphasising the volume of services rather than their quality or appropriateness, and increasing attention on sentinel events and avoidable readmissions could counter this.

Ms Ley has asked IHPA to present its options to the COAG Health Council by 30 November.

This would mean they could be incorporated into a new funding model for sentinel events and preventable hospital-acquired conditions that has been foreshadowed to come into effect from 1 July next year.

But hospital funding remains a huge political football between the Federal and State levels of government.

Although a pledge by Prime Minister Malcolm Turnbull of an additional $2.9 billion in Commonwealth funding to 2020 helped mute public hospital services as an issue during the Federal election, long-term funding arrangements remain unresolved and are a point of tension between the two levels of government.

It makes a challenging setting for preliminary Productivity Commission (PC) proposals to increase information disclosure by hospitals and doctors and greater contestability between human services, including public hospitals.

While Australian public hospitals performed well by international standards, “there is scope to improve”, the PC said, including by matching domestic best practice and publicly disclosing more information.

“Public patients are often given little or no choice over who treats them or where. Overseas experience indicates that, when hospital patients are able to plan services in advance and access useful information to compare providers (doctors and hospitals), user choice can lead to improved service quality and efficiency,” the PC said.

It said that any reforms to boost user choice would have to be supported by “user-oriented information”, and suggested the English model in which increased choice is offered at the point where GPs refer patients to a specialist.

The Commission said experience in England had shown that patients given a choice of hospital and consultant-led team sought out better performing providers, and hospitals in locations where competition was most intense recorded the biggest improvements in service quality.

In order to exercise their choice, patients had access to web-based information enabling them to compare providers according to waiting times and mortality rates, and could use an online booking service.

“Greater competition, contestability and informed user choice could improve outcomes in many human services,” the PC said. “Well-designed reform, underpinned by strong government stewardship, could improve the quality of services, increase access…and help people have a greater say over the services they use and who provides them.”

Treasurer Scott Morrison said he had ordered the review to improve the efficiency and cost effectiveness of human services.

But Opposition leader Bill Shorten, reprising Labor’s scare campaign during the Federal election on the privatisation of Medicare, said he feared it would be used to justify the wholesale handover of human services to the private sector.

“We’ve all seen this move before,” Mr Shorten said. “When Malcolm Turnbull and the Liberal Party start talking about changing human services it means that poor people get it in the neck.”

The Commission said that not all human services were amenable to increased competition, contestability and choice, but identified public hospitals and palliative care services among six priority areas targeted for reform.

The enormous variety of Australia’s public hospitals, including big differences in the populations they serve, workforce arrangements and characteristics and the complexity of their links to the rest of the health system, militate against like-for-like competition – something the Commission admitted.

If such issues or political considerations made fostering direct competition unfeasible, the Commission instead suggested exerting pressure for improved performance by making the position of senior hospital managers more precarious.

“There have been difficulties in the past commissioning non-government providers, and lessons from these attempts should not be forgotten,” it said. “As a result, it may be more feasible to implement contestability as a more transparent mechanism to replace an underperforming public hospital’s management team (or board of the local health network) rather than switch to a non-government provider.”

The PC’s preliminary report is open for submissions until 27 October, and the Commission is due to deliver its final report by October 2017.

Adrian Rollins

Govt adviser calls for public hospitals to be ‘contestable’

Mortality rates and treatment outcomes for individual hospitals and medical practitioners could be made publicly available and patients given a choice of hospital and specialist under Productivity Commission proposals to improve the quality and accessibility of health services.

In the preliminary findings of a review initiated by Treasurer Scott Morrison into options for increased competition and consumer choice in the $300 billion human services sector, the Commission has proposed increased information disclosure by hospitals and practitioners and greater contestability between services.

Mr Morrison said he had ordered the review to improve the efficiency and cost effectiveness of human services.

“We’ve all seen this move before,” Mr Shorten said. “When Malcolm Turnbull and the Liberal Party start talking about changing human services it means that poor people get it in the neck.”

The Commission said State and Territory governments could also take a more contestable approach to commissioning services when renegotiating service agreements with local health networks.

On palliative care, the PC lamented that a dearth of comprehensive, publicly available national data hampered accountability and helped drive big differences in the quality and range of services available.

It said there was little evidence that low quality providers were being held to account.

The PC acknowledged that the “emotionally taxing and psychologically distressing” environment in which a person was approaching the end of their life militated against making choices about palliative care.

“Taboos about discussing death can prevent this from happening,” the Commission said. “Patients often rely on medical professionals to initiate conversations about palliative care, many of whom are inadequately trained about, and intimidated by, holding such conversations.”

Notwithstanding such challenges, the PC argued that introducing greater competition, contestability and user choice in palliative care would improve outcomes and reduce current substantial variation in the quality of, and access to, services in different areas of the country.

To achieve this, though, “would require careful design to ensure that the interests of patients and their families are well served. Special measures for consumer protection may be needed”.

Indeed, even where reform ushered in greater competition and contestability, the PC said the unique nature of human services meant the Government would need to maintain strong oversight.

“Government stewardship is critical,” the agency said. “This includes ensuring human services meet standards of quality, suitability and accessibility, giving people the support they need to make choices, ensuring the appropriate consumer safeguards are in place, and encouraging and adopting ongoing improvements to service provision.”

Other priority areas of human services nominated by the Commission for increased competition and contestability included public dental services, social housing, services in remote Indigenous communities and grant-based family and community services.

Among those areas assessed for reform but not identified as a priority by the PC at this stage were general practice, primary health networks (PHNs), mental health services, community health services and child and family health services.

The preliminary report is open for submissions until 27 October, and the Commission is due to deliver its final report by October 2017.

Adrian Rollins

[Perspectives] Health-care provider as witness

As he was approaching his own death, Stuart Farber, a palliative care physician, reflected on personhood and what he referred to as his thread:

AMA in Action

Picture: AMA President Dr Michael Gannon with Sir Michael Marmot, President of the World Medical Association

AMA President Dr Michael Gannon has been clocking plenty of air miles this month travelling around the country and internationally representing the AMA in meetings with politicians, regulators, Federal Government officials, advisers and other health advocates – even squeezing in some karaoke at the Confederation of Medical Associations in Asia and Oceanic in Thailand.

Dr Gannon met with the Medical Board of Australia and the Australian Health Practitioner Regulation Authority as part of a quarterly meeting. He flew to Sydney and spoke with Ramsay Health Care CEO Danny Sims and, while in town, caught up with Professor Bruce Robinson to discuss the MBS Review Interim Report.

In Melbourne, Dr Gannon caught up with Greens Leader Senator Richard Di Natale, before flying to Canberra to meet with Independent Hospital Pricing Authority CEO James Downie, CEO of Palliative Care Australia Liz Callaghan, and Chief Medical Officer and the inaugural Surgeon General of the Australian Border Force Dr John Brayley.

Dr Gannon finished the month spending a few days in Thailand with other Asia and Oceanic Medical Associations to talk about issues and directions in global health policy.

Kirsty Waterford

[Correspondence] Palliative care and access to medicines for healthy ageing

We read with interest the World report on ageing and health (May 21, p 2145)by John Beard and colleagues.1 We commend WHO for undertaking such a comprehensive and much needed report. We express concern, however, that the Health Policy paper, with a detailed section on multimorbidity and geriatric frailty, makes no mention of palliative care for older people as an essential element of a life-course approach. Any life-course approach and healthy ageing strategies must include palliative care to maximise wellbeing, particularly for older people suffering from the multiple conditions enumerated in the paper.

Medicinal cannabis can now be prescribed by NSW GPs

New regulation means that from 1st August 2016, NSW doctors can seek approval to write up scripts of medicinal cannabis for patients who need it.

Previously, patients could only legally access cannabis-based medicines through clinical trials. However thanks to changes under the Poisons and Therapeutic Goods Amendment (Designated Non-ARTG Products) Regulation 2016 (under the Poisons and Therapeutic Goods Act 1966), the drugs can now be prescribed for patients who have exhausted their standard treatment options.

“People who are seriously ill should be able to access these medicines if they are the most appropriate next step in their treatment,” NSW Premier Mike Baird said on Sunday.

How do doctors get approval to prescribe?

In order to prescribe the drugs, doctors will need to get approval from both the Commonwealth Therapeutic Goods Administration and NSW Health.

According to NSW Health, in making their decision, the Commonwealth “will consider the prescriber’s expertise, the suitability of the product to treat the patient’s condition, and the quality of the product.”

A committee of medical experts from NSW Health will review the prescriber’s application, and will consider “whether the unregistered cannabis-based product is being appropriately prescribed for the patient’s condition.”

What can be prescribed?

Some cannabis-based products have already been assessed for quality, safety and efficacy by the medicines regulator. These include:

Nabiximols (Sativex®) – registered in Australia with the Therapeutic Goods Administration for managing spasticity associated with multiple sclerosis.
Dronabinol – registered by the US Food and Drug Administration for anorexia in patients with AIDS and chemotherapyinduced nausea and vomiting, where standard treatment has failed.
Nabilone – registered by the US Food and Drug Administration for chemotherapyinduced nausea and vomiting.

Although applications aren’t limited to the above products, the products applied for must be legally produced and manufactured to appropriate quality standards. There must also be evidence that supports use for that product for the patient.

How do doctors apply?

For more information and to apply for authority to prescribe and supply cannabis products, visit NSW Health’s Pharmaceutical page. More information can also be found at their Cannabis and cannabis products information site.

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