Dr Richard Lugg is a committee member for Dying with Dignity WA and also Doctors For Assisted Dying Choice WA. Dr Lugg wrote this paper in response to the Minority Report that was released as part of the 'My Life, My Choice' Final Report from the Joint Select Committee on End of Life Choices. The Minority Report was written by the Hon Nick Goiran, MLC.
Dr Richard Lugg
VAD – The Medical Help of Last Resort
By Dr Richard Lugg
Historical background
The original Hippocratic Oath, written down in the fourth or fifth century BC, contains (in modern English translation) the following passage:
"I will use treatment to help the sick according to my ability and judgement, but never with a view to injury and wrong-doing. Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course.1.
The phrase “injury and wrong-doing” is the key to understanding what follows. The physician is swearing not to use his skills or knowledge to commit murder, or to facilitate the commission of murder by others. With that we can, hopefully, all agree.
After several re-writings over the millennia, this precept emerged in the the World Medical Association’s 1948 Declaration of Geneva (now known as the Physician’s Pledge) in the following form:
I WILL MAINTAIN the utmost respect for human life.
In 2017, the WMA inserted the following undertaking into the Physician’s Pledge,
one line above this precept:
I WILL RESPECT the autonomy and dignity of my patient.2.
The WMA has left unspecified how these two precepts are to be balanced, one against the other, where a terminally ill patient, for good reason (which could well include their dignity), requests a modern physician’s help in the shortening of their life. Clearly, no such dilemma would have confronted the ancient Greek physicians of the fourth or fifth century BC, nor was it contemplated in the original Hippocratic Oath.
The AMA position
The AMA has adopted the Physician’s Pledge, with its 2017 amendments. But in its
2016 Position Statement on Euthanasia and Physician Assisted Suicide, it had already declared:
The AMA believes that doctors should not be involved in interventions that have as their primary intention the ending of a person’s life.3.
The 2016 Position Statement followed extensive consultation of the membership, including a national survey. The opinion of the members who participated in the survey did not always accord with the Position Statement subsequently adopted. As Doctors for Assisted Dying Choice have pointed out.4.
- 73% of respondents agreed that if euthanasia were to become lawful, it should be provided by doctors
- 61% of respondents agreed that if physician assisted suicide were to become lawful, it should be provided by doctors
- 56% of respondents disagreed that allowing doctors to lawfully provide euthanasia would negatively affect the trust patients have in doctors
- 45% of respondents agreed that physician assisted suicide can form a legitimate part of medical care
- 17% of respondents disagreed with or failed to support the then current AMA policy that doctors should not be involved in interventions that have as their primary purpose the ending of a person’s life.
License to Care not Licence to Kill
This is the subtitle of the Goiran Minority Report. 5.. The author returns to the phrase in paragraph 1.107, saying that “assisted suicide is not a step on the continuum of good end‐of‐life practices, as it is radically different as the intent is no longer to care but to kill.”
This sentiment was repeated in a number of submissions to the WA Inquiry into End of Life Choices, including by a physician for whom I have the greatest of respect, Dr Michael Quinlan. In his evidence to the Inquiry on 1 March, Dr Quinlan said:
Physician assisted dying, at face value could be good care of the dying. So could voluntary assisted dying—it could be good care of the dying. But if you strip the euphemisms away, patient (sic) assisted dying in my definition is medical homicide—a direct intention to kill the patient by an act carried out by the doctor. Voluntary assisted dying is voluntary assisted suicide, which is currently illegal. Again, that comes under the category, as far as I am concerned, of aiding and abetting a crime.6.
At the Notre Dame Conversation around End of Life Issues on 19 September, Dr Quinlan directed a question to me, saying that on graduation, doctors get a licence to heal, but now some want them to get a licence to kill. I replied that this comment was offensive to Doctors for Assisted Dying Choice, repeating what I had said in my introductory remarks, 7. that the driving force behind our position was compassion for our patients as they approach the end of life, and a commitment to the relief of their suffering always.
I had made a more elaborate statement to this effect in my evidence to the Inquiry into End of Life Choices on 26 February, when I said to the Joint Select Committee:
Some people have told you that we want the State to sanction the intentional killing of our patients. But their concerns are based on a false premise. None of us are in medicine for the purpose of killing our patients. Our duty is to help our patients—to help them get well when we can, but to relieve their suffering always. When we have terminally ill patients with unbearable suffering, when the effective relief options have narrowed down to just a single option, really, and when they request relief at any cost and are of sound mind, it is that relief and that relief alone that drives us to seek reform of the law that traps our patients in their terminal suffering and stops us from helping them that last, final time. Yes, it is a relief of suffering that drives us, even when such relief can only come at the cost of shortening what little life is left. We are not in the business of killing our patients.8.
What counts – intention or outcome?
The AMA Position Statement includes the following:
- Euthanasia is the act of deliberately ending the life of a patient for the purpose of ending intolerable pain and/or suffering. Physician assisted suicide is where the assistance of the doctor is intentionally directed at enabling an individual to end his or her own life.
- All dying patients have the right to receive relief from pain and suffering, even where this may shorten their life.
- If a doctor acts in accordance with good medical practice, the following forms of management at the end of life do not constitute euthanasia or physician assisted suicide:
…
the administration of treatment or other action intended to relieve symptoms which may have a secondary consequence of hastening death.
Put another way, the AMA is saying that treatment with the intention of relieving pain and suffering is acceptable if it results in death, so long as that death, whether foreseeable or even likely, is not a guaranteed outcome of the treatment. But such treatment is not acceptable if it results in death as a guaranteed outcome. The intention may well be the same; it is the variation in outcome that makes the difference.
It is no wonder that Doctors for Assisted Dying Choice find little reason to object to the AMA’s opposition to “interventions that have as their primary intention the ending of a person’s life.” That has never been our primary intention – as I told Dr Quinlan, what drives us is a commitment to the relief of suffering, always. That is something we hope we share with all doctors.
When Nick Goiran with his rhetorical flourish says of assisted suicide “the intent is no longer to care but to kill,” he reveals how little he really understands about doctors.
The AMA’s injunction against “interventions that have as their primary intention the ending of a person’s life” actually remains faithful to the original Hippocratic ideal: doctors should not act with a view to injury or wrong-doing against their patients, including poisoning their patients. 9. What’s not to agree about that?
Who has the higher moral ground?
Doctors for Assisted Dying Choice have never claimed the higher moral ground in this debate. But perhaps Stephen Hawking said it for us in his famous utterance: “To keep someone alive against their wishes is the ultimate indignity.” 10.
There is something that just doesn’t seem to sit comfortably about a doctor who is managing a terminally ill patient with grievous and irremediable suffering, and who has nothing more to offer after all standard curative and palliative options have been exhausted, should that doctor choose to leave the patient to their suffering and distress until such time as what life is left in their disease-wracked body has run its natural course.
No wonder doctors faced with such a situation may turn to terminal sedation (TS), even when the patient is no longer capable of giving informed consent. The attempt is frequently made to maintain a distinction between TS and VAD, based on a supposed difference in intention, but as the Joint Select Committee in its report My Life, My Choice observed (page 133):
The fine line between intention to relieve suffering and intention to end life is so fine as to be apparent only in the mind of the physician. 11.
And as Marshall Perron has aptly observed:
Terminal sedation is, in fact, slow euthanasia, once commenced, the death of the patient is certain and intended. 12.
In his Medical Forum article,11. Dr Peter Beahan gives four reasons why TS is a less satisfactory option that VAD:
- With TS, timing is prolonged and uncertain. The patient may linger in a semi-comatose state, dehydrated and deteriorating. With VAD, the process is quick and certain. The patient makes a personal decision while dignity and purpose are intact. This is both a rational and a mentally healthy choice.
- With TS, documentation is cryptic and statistical information difficult to collect. There is no regulatory framework. With VAD, documentation is clear, frank and open to scrutiny.
- With TS, death can be a trial for all concerned, and remembered with guilt and horror. With VAD, death is remembered with reverence and thankfulness – a fitting end that rounds off a special life.
- With TS, the decision is made by the physician. With VAD, the decision is made by the patient.
Again, we see that the distinction between TS and VAD is more a matter of variation in outcomes than of intention. A suitable VAD law would see a dramatic reduction in the need to contemplate TS as a patient management option.
Does VAD negatively affect the trust patients have in their doctors?
The Minority Report quotes the American College of Physicians at paragraph 2.161 as stating that the practice of assisted suicide:
is problematic given the nature of the patient‐physician relationship, affects trust in the relationship as well as in the profession, and fundamentally alters the medical profession’s role in society …
As mentioned earlier (page 1) a majority of doctors who responded to the 2016 AMA national survey disagreed that allowing doctors to lawfully provide euthanasia would negatively affect the trust patients have in doctors.
The Minority Report provides no evidence to support the proposition that removing legal barriers preventing doctors from responding to competent and persistent requests from their terminally ill patients for assistance to shorten what little life they have left, would somehow adversely affect the trust patients have in their doctors, or fundamentally alter the medical profession’s role in society.
Such a position is incredibly medico-centric. Patients are far more likely to regard the removal of such legal barriers as strengthening the patient’s role in the doctor-patient relationship. Doctors sometimes forget that VAD laws are fundamentally about empowering patients, rather than doctors.
As Doctors for Assisted Dying Choice have pointed out, 13. the above proposition is not supported by evidence from other jurisdictions. They add: “There is evidence that the provision of VAD increases trust and encourages open communications about the terminally ill patient’s fears and wishes.
VAD can be transformative for the doctors who provide it, as well as the patients who are enabled to receive it. Ontario family physician Tony Reid has challenged physicians who have reservations about it to hear the stories of patients, suspecting that most would choose it (“MAID” in Canada) for themselves in the same circumstances. 14.
Dr Reid recounts the profoundly moving experience of his first case of providing MAID to a dying patient, an experience that has been repeated with each subsequent case, even though it is “a medical intervention that runs counter to our normal practice.” It is the stories that patients tell that solidify his conviction “that this care is appropriate and compassionate … In every case, when I hear the story, I understand the request for MAID and would likely choose it myself if I were in the same situation.
“I have been struck by the determination and courage of those requesting MAID, right up to the moment of their death. These patients have made up their minds and faced their choices unwaveringly. Many describe the relief they feel knowing that they have control over the end of their lives and that they will not fear the unknown or a possible struggle when dying. Much of the anxiety of a terminal diagnosis has been relieved for them and their family members.”
He describes the relief of family members “to see how peacefully their loved one dies and feel a sense of release from their own suffering as they witness that person’s decline. Of course they are sad, and hugs go all around. But they tell us that their loved one died on his or her own terms and they view this outcome as positive. Follow-up telephone calls to families several days after each medically assisted death have all been very positive, with no regrets expressed by the family.”
Dr Reid considers MAID “to be an extension of palliative care. And personally, as a family physician, I have found providing MAID to be astonishingly rewarding, as it combines so many of the skills and art that make family medicine so fulfilling.” He says it has “profoundly altered the approach to death and dying in Canada,” an alteration that is irrefutably for the better.
Conclusion
VAD laws do not provide doctors with a licence to kill. Rather, they:
- extend to terminally ill patients with grievous and irremediable suffering the same control over medical interventions relating to their death that they already have over medical interventions in life (subject to safeguards to protect vulnerable patients from undue influence or coercion), and
- unshackle their doctors from the legal restraints preventing them from responding appropriately to their terminally ill patients’ requests for medical assistance in dying (subject to safeguards to prevent medical error or abuse).
To paraphrase Andrew Denton, 15. terminally ill patient do not request VAD because they want to die; they request it because they are dying – in dreadful and unconscionable ways. VAD laws are needed to address a lamentable gap in the options available to such patients.
Dr Richard Lugg
4 November 2018
[1] The Loeb translation <https://www.loebclassics.com/view/hippocrates_cos-oath/1923/pb_LCL147.299.xml;jsessionid=CEC5573EE6AE602378CFE1DD0E9E5729>.
[2] WMA Declaration of Geneva, 2017 <https://www.wma.net/policies-post/wma-declaration-of-geneva/>.
[3] Australian Medical Association. Position Statement on Euthanasia and Physician Assisted Suicide, 2016, 3.1.
[4] Doctors for Assisted Dying Choice. Supplementary Submission to the WA Inquiry into End of Life Choices, 28 May 2018, pp. 1-3.
[5] Parliament of WA. My Life, My Choice, 2018. Minority Report, p.287 et seq.
[6] Professor Michael Quinlan. Transcript of evidence to WA Inquiry into End of Life Choices, 1 March 2018, p.10.
[7] See Appendix to this document.
[8] Dr Richard Lugg, Dr Peter Grattan Beahan, Dr Roger Paterson. Transcript of evidence to WA Inquiry into End of Life Choices, 28 February 2018, pp. 1-2.
[9] Dr Harold Shipman (died 13 January 2004), Britain’s notorious serial medical murderer, should have observed this injunction.
[10] The Guardian, 3 June 2015 <https://www.theguardian.com/science/2015/jun/03/stephen-hawking-i-would-consider-assisted-suicide>.
[11] Dr Peter Beahan, ‘The Case for Voluntary Assisted Dying’, Medical Forum, June 2018, p. 23.
[12] Marshall Perron. Submission to WA Inquiry into End of Life Choices, p.4.
[13] Op cit., page 2.
(14) Reid, A. Reflections from a provider of medical assistance in dying. Can Fam Physician, 2018;64:639-40 <www.cfp.ca/content/64/9/639?rss=1>.
(15) Andrew Denton. Transcript of evidence to WA Inquiry into End of Life Choices, 13 April 2018, p.13.
APPENDIX
SPEECH AT NOTRE DAME’S CONVERSATION AROUND END OF LIFE ISSUES
I am pleased to have this opportunity to talk to you tonight about a topic that’s very dear to my heart. I’d like to start by talking a bit about Doctors for Assisted Dying Choice, and then have a look at what legislation for assisted dying choice might mean for the ordinary people of Western Australia. Finally I’d like to come to the Parliamentary Report My Life, My Choice, and take a brief look at where it might be taking us from here.
As you may know, Dr Joanna Flynn retired at the end of last month from the Medical Board of Australia, of which she was the inaugural Chair. In her online valedictory address, she told her medical colleagues that patients want us to care, to be compassionate, and kind. When I read this, it reminded me of one of my own colleagues in Doctors for Assisted Dying Choice, who told us upon joining our group that we were amongst the most caring and compassionate doctors he had ever met. We share with all doctors the belief that it is our duty to heal wherever possible, but to relieve suffering – always.
For us, the driving force behind our position is compassion for our patients as they approach the end of life, and a commitment to the relief of their suffering always. But it is more than that – it springs also from a determination to put the autonomy of our patients before the views of individual doctors, to put our patients in the driving seat of their own care as they approach the end of life.
Most people agree that the days of “doctor knows best” are definitely over, and this is never more true than when all attempts at curative treatment have become futile, and patient management has shifted from a healing approach to palliation, as doctor and patient prepare for the patient’s demise.
That is why around the world, wherever assisted dying laws have been enacted, the decision on when the patient’s suffering has become intolerable has been placed in the hands of the patient. Only patients know when their suffering has become unbearable, when the dying process has become an unspeakable torture, when the only humane option left to them is to ask for the dying process to be foreshortened.
When the law of the land does not provide a legal option for the foreshortening of the dying process, at the express and documented request of a patient approaching the end of life, for the relief of grievous and irremediable suffering, then clearly, there is a gap in the available options for patient care, and that constitutes an area of unmet need. The size of this gap is disputed, but what is no longer in any real dispute is that it exists. To believe otherwise is quite fanciful.
Whatever the true size of this gap is, it’s clear that most of us in this room are never going to experience grievous and irremediable suffering as we approach the end of our lives. Most of us are never going to need any reform of the law that would be necessary to address this area on unmet need. I’ve met people who have no interest in pursuing law reform in this area because they just don’t believe that they would ever have need of it.
They may well be right, but fortunately, they’re not representative of the generous nature of the Australian people. Ordinary Australian people, or at least more than four out of five of them, are as generous in spirit, as they are prudent in outlook. They want the law to help, and not hinder, those of their number who have the misfortune to experience grave and irremediable suffering as they approach the end of life, and while they may never expect to be in that position themselves, they have the foresight to want a legal regime that will work for them should the unthinkable ever come to pass. They want their own insurance law for the end of life.
How well have these ordinary people of our State been served by the Parliamentary Report My Life, My Choice, brought down last month by the Joint Select Committee on End of Life Choices? By our reckoning, pretty well. The Committee examined advance health care planning, the status of palliative care throughout WA, and the possible introduction of a State law to permit voluntary assisted dying, or VAD as it’s commonly known.
We broadly support all of their findings and recommendations in each of these areas, although, as our name suggests, we do have a special interest in the introduction of a VAD law in WA. Here, they have produced a comprehensive yet cautious framework for change, in the hope that the State Government will get on with the job of preparing a Bill for submission to a conscience debate during the life of the present Parliament.
What is the next step? The Government is due to advise Parliament on its response to the Report by Tuesday 27 November. The principal recommendation it must address regarding VAD is whether to set up the expert panel proposed in the Report to consult with key stakeholders in developing the Bill. It is anticipated that the panel should include health and legal professionals and health consumers.
How long this panel will have to complete its work is not clear, but timelines somewhere between three and six months have been suggested. So it will certainly have its work cut out!
Mr Chairman, I think I’ll leave it there. No doubt a lot more detail regarding a possible VAD Bill will come up during question time.
Dr Richard Lugg
19 September 2018