Why there will always be a need for assisted dying laws

The number one misleading argument against Voluntary Assisted Dying laws is that ‘there would be no need if only palliative care were properly resourced’.

Australia's and New Zealand’s palliative care systems are among the best in the world [i]. But claims that they can help relieve all suffering are untrue. Here are six reasons why there will always be a need for assisted dying laws.

1. Palliative Care is excellent but it has limits.

While palliative care is excellent and can accommodate the needs of the majority of dying people, even the best-resourced care cannot relieve the extreme suffering that some people endure.

In Palliative Care Australia’s own words: “While pain and other symptoms can be helped, complete relief of suffering is not always possible, even with optimal palliative care” [ii].

Victoria’s and Western Australia’s parliamentary inquires – two of the most comprehensive investigations into end-of-life care – agreed [iii].

These are not criticisms. They simply reflect the reality of modern medicine, which can keep us alive longer but which still has no cure for diseases like cancer and motor neurone disease.

2. Suffering encompasses more than just pain.

Opponents of VAD laws choose to focus solely on pain at the end of life because analgesics and sedatives can deal with most (but not all) physical pain. However, end-of-life suffering is much more than pain.

Suffering is “an affliction of the person, not the body”, says Dr Eric Cassell, Emeritus Professor of Public Health at Cornell University [iv]. “No matter how good the care … and with even the very best treatment, the suffering of some patients is terrible and unremitting.”

Dr Roger Hunt, an Adelaide specialist in Palliative Medicine for three decades, explains: “Dying people have varied and sometimes intense suffering, including physical, emotional, and existential suffering.

“All surveys of palliative patients, including those in most renowned hospices, show they experience multiple concurrent symptoms. Severe refractory symptoms, including suffocation, pain, nausea and confusion, requiring palliation with deep sedation, have been reported in up to 50% of palliative care patients" [v].

3. Terminal sedation is not for everyone

Palliative care’s response to extreme intractable pain and suffering is deep (or terminal) sedation, a medically controlled (and contested) process in which a patient nearing death is sedated into a coma, commonly without their explicit consent.

It is a last resort – to be administered when other symptom control has failed, usually in the final days before death [vi]. Terminal sedation doesn’t save a person from suffering – it is a response to suffering that is already happening and which can no longer be controlled.

The suffering may have been intense and enduring for days, weeks or months before sedation is employed – a decision that is entirely up to the doctor, according to his or her own personal views.

Many people do not want to end their days in a hospital or hospice drugged into a coma, with their loved ones watching on.

A person has a right not to suffer in this way – or to subject their loved ones to this trauma – if that is their choice.

4. Your doctor, not you, decides how much pain relief you can have.

Under Australian and New Zealand law, decisions about pain relief and terminal sedation – when and how quickly they are administered – are entirely in the hands of the treating doctor and based on what he or she thinks is ‘right’ [vii].

What if your doctor believes it is not moral to give increased doses of medication that may hasten death? Or that suffering has redemptive value? Or that your cancer can be ‘good for you’? All these things have been expressed by palliative care physicians in Australia and elsewhere.

In these cases, as a patient, you have no choice but to accept your doctor's beliefs and die a prolonged and potentially miserable death, no matter how emphatically you ask for the opposite.

5. Your palliative care service may have its own agenda.

Catholic run services form the largest non‐government grouping of health and aged‐care services in Australia and New Zealand [viii]. Protestant Christian groups also provide end-of-life care. Both have very fixed ideas about what death should look like.

According to the Vatican’s Charter for Health Care Workers [ix], published in English in 1995 and updated in 2016, “borne in close union with the sufferings of Jesus, sickness and suffering assume ‘an extraordinary spiritual fruitfulness’.” [para 54]. “For the Christian, pain has a lofty penitential and salvific meaning.” [para 69] “Death, then, must be evangelized: The Gospel must be announced to the dying person.”

These guidelines, reflected in the Code of Ethical Standards for Catholic Health and Aged Care Services in Australia, [x] give the (Catholic) doctor and other health care workers the power to make decisions about the care they give according to religious doctrine, without any real regard for the needs or wishes of the dying person or their family.

6. It's a matter of choice.

Australians and New Zealanders have long believed we should have the right to live our lives as we choose.

For many people, maintaining this right, and autonomy and control, until the end is non-negotiable. At the end of life, no one should dictate to us how much suffering we must endure.

This right to bodily self-determination is already accepted in law. Legally, the principle of autonomy prevails over the sanctity of life [xi] and a patient can ask for treatment to be withheld or withdrawn even if it hastens death.

Adults with decision-making capacity who face a long, drawn out and distressing death should have the option to end that suffering. As one supporter of Go Gentle Australia said: “I have taken responsibility for myself my whole life. Why not for my death?” [xii]

Assisted dying laws have been passed in two Australian states – Victoria and Western Australia. Around two-thirds of Australians still have no access to choice at the end of life.

Go Gentle Australia believes every terminally ill person, no matter where they live, should have the same rights to access more compassionate end-of-life choices, including Voluntary Assisted Dying.

Join our campaign for a better conversation around end-of-life choices, including VAD laws in every Australian state and territory. 

[i] The Economist “The 2015 Quality of Death Index: Ranking Palliative Care Across the World”. A report by The Economist Intelligence Unit, 2015. https://eiuperspectives.economist.com/sites/default/files/2015%20EIU%20Quality%20of%20Death%20Index%20Oct%2029%20FINAL.pdf

[ii] Palliative Care Australia, “Policy statement on voluntary euthanasia”, Canberra, 2006, p.2. Quoted by: Neil Francis, “AMA uncovered: How its own review exposed its assisted dying policy as indefensible”, Dying for Choice, 27 March, 2017, p.20 –

http://www.dyingforchoice.com/docs/AMAuncoveredFullReport27Mar2017.pdf

[iii] A Sanderson (MLA) and Hon. C J Holt (MLC), “Report 1 - My Life, My Choice: The Report of the Joint Select Committee on End of Life Choices: ‘Chair’s Foreword’”, 40th Parliament, Parliament of Western Australia, August, 2018, – https://apo.org.au/sites/default/files/resource-files/2018/08/apo-nid188761-1227101.pdf

[iv] Cassell, Eric, The Nature of Suffering and the Goals of Medicine, Oxford University Press, 2004, p.xii. Google Books edition, viewed 19 July 2017, <https://books.google.com.au/books/about/The_Nature_of_Suffering_and_the_Goals_of.html?id=BiqTtq5uZZwC&redir_esc=y>

[v] Roger Hunt, ‘Submission 779: Inquiry into End of Life Choices’, 11 August 2015, viewed 19 July 2017, https://www.parliament.vic.gov.au/images/stories/committees/lsic/Submissions/Submission_779_-_Roger_Hunt.pdf>.

[vi] Twycross, R 2019, 'Reflections on palliative sedation', Palliative care, 12, pp. 1-16.

[vii] Sheila A. M., McLean, “Terminal Sedation - Good Medicine?, Good Ethics? Good Law?”, QUT Law Review, Volume 16, Issue 1, 2016, pp. 113-134 – http://www.austlii.edu.au/au/journals/QUTLawRw/2016/7.html

[viii] Joint Select Committee on End of Life Choices, “Inquiry into the need for laws in Western Australia to allow citizens to make informed decisions regarding their own end of life choices”, Transcript of Evidence, Parliament of Western Australia, Perth, 28 February, 2018, p.1 –

http://www.parliament.wa.gov.au/Parliament/commit.nsf/(Evidence+Lookup+by+Com+ID)/1512F5C7DCBAD165482582440029A273/$file/180228+-+TS+-+Catholic+Health+Aust+St+John+of+God+Health+Care++Catholic+Homes+WA+-+FINAL.pdf

[ix] The Pontifical Council for Pastoral Assistance to Health Care Workers, “The Charter for Health Care Workers”, Vatican City, 1995 –

http://www.vatican.va/roman_curia/pontifical_councils/hlthwork/documents/rc_pc_hlthwork_doc_19950101_charter_en.html

[x] Catholic Health and Aged Care Services, “Ethical Standards for Catholic Health and Aged Care”, published by St Vincent’s & Holy Spirit Health, 2008, point vii – https://tinyurl.com/y4v45cbe (cached version) PDF download available here – https://tinyurl.com/y2jyl5t4

[xi] Supreme Court of Western Australia, “Brightwater Care Group (Inc) -v- Rossiter [2009] WASC 229”, 20 August, 2009 – http://www7.austlii.edu.au/cgi-bin/viewdoc/au/cases/wa/WASC/2009/229.html

[xii] Isobel (supporter, ACT) Go Gentle Australia Supporter Survey 2019