Submission to the Justice Select Committee on the End of Life Choice Bill

Did you make your submission supporting David Seymour's End of Life Choice Bill before submissions closed on Tuesday -- supporting your right to voluntary euthanasia?

Jonathan Darby did. and here it is:

Submission to the Justice Select Committee on the End of Life Choice Bill

Jonathan Darby

The End of Life Choice Bill presents the New Zealand Parliament with the valuable opportunity to afford New Zealanders the right to choose for themselves the time of their death when facing an incurable illness with a prognosis of less than 6 months to live and to have the assistance of a trained medical professional

In principle, this submission is in support of the Bill.  The time is overdue for people to have this right, a right that has been denied to many over the years.  In the 21^st century we shouldn’t be saying to individuals who are facing death and who would wish to take the option afforded by this Bill ‘sorry you must keep on living and we will do our best to keep you comfortable.’  As a civilised society in the 21^st century this does not seem to me to be an acceptable response to an individual who wants to maintain control over their lives.  This Bill does not impose compulsion on anyone; it simply gives someone the ultimate choice over his or her own life.

There are a number of issues that this submission will address, these include Personal autonomy, the sanctity of life and the medical principle of do no harm.  The submission will conclude with some suggested amendments.

Personal autonomy

It has been said that the principle of respecting the autonomous choices of individuals “runs as deep as any principle.”[1]  The origins of this term go back to Greek terminology meaning “self rule.”  This is what we are dealing with in this Bill.  The ability for someone to have self-rule over their lives and the right to decide for themselves when they wish to end their suffering.  This submission argues that as long as the criteria for an autonomous decision are met, that is, they understand:

·      What it is that they are requesting,

·      The consequences of their decision,

·      They are able to communicate that decision and finally

·      The decision is free of coercion or undue influence,

then the individual’s choice must be respected. 

The medical profession has made significant moves away from the paternalistic view of the-doctor-knows best to a model where patients are actively involved in their care.  Indeed this has been put into practice through the Health and Disability Code of Consumer Rights.  It is illogical to afford these rights to patients right up until the very end of their life and then deny them those same rights when it comes to determining for themselves when they wish to end their suffering.

Sanctity of Life

One of the prevalent objections, most notably found in religious communities, is that life is sacred and only God can decide when a person’s time of earth is complete.  We live in a secular society and it is submitted that although we can and should respect the views of religious communities, the views expressed should not carry more weight than any other views.  It is interesting to note that the prevailing view of religious communities against Physician Assisted Suicide is not universally held amongst all religious communities.  Indeed a senior Bishop in the Church of England has come out in support of assisted dying.  He comments that part of honouring the sanctity of life “is respecting people’s integrity to make decisions about themselves.”[2]  He goes on to say that by not allowing those who would seek assisted dying the opportunity of doing so, Parliament is showing those individuals “another form of disrespect.”[3]  This submission agrees entirely with the sentiments expressed by the Bishop.

Do no harm

The concept that a doctor should ‘do no harm’ is often cited in opposition to measures such as those suggested in this Bill.  However, it is submitted that the harm that is referred to in opposition is the physical harm of bringing about the death of an individual.  It fails to consider the other types of harm that might be caused by not allowing an individual the opportunity to end their suffering at the time of their choosing.  These forms of harm include psychological and emotional harm, which could be argued to be far more serious and difficult to endure than physical harm.  If the status quo were to remain, people who have made the decision for themselves that their condition and prognosis is such that they do not wish to prolong their suffering, are not only forced to endure the physical deterioration, but also the emotional and psychological distress which can often accompany it.

The role of the clinician is central to this debate and the question seems to be, what are the boundaries of acceptable modern medical practice?  It is clear that where a doctor has the ways and means to cure their patients or at the very least make their patients condition considerably better, then they should ensure that this happens with the cooperation and support of the patient.  However, it is suggested that this is a very narrow way of looking at the role of the doctor. The modern physicians role is much more holistic and takes into account the patients life as a whole, including their psychological and emotional health.

What this Bill is not

It’s important to address what this Bill is not.  Firstly, it is not about patients being killed by their doctors or as some have put it “a licence to kill.”  These are emotive responses that do not stand up to scrutiny.  The Bill’s title is “End of Life Choice Bill”, the operative word there is ‘choice’.  It must be the patients choice to seek assisted dying, it isn’t and must never become the role of the doctor to suggest death as a course of action and it must never be that the death of a patient is the first option considered.  As suggested in other parts of this submission, death via the means suggested in this Bill should only occur after all other options have been considered and discounted by the patient.

This Bill is not an attack on palliative care.  Palliative care provides a valuable service to the community and helps many people to achieve a peaceful and dignified end.  However, it needs to be recognised that it is not for everyone and can lead a death in circumstances that are less than dignified, despite the best efforts of the clinicians involved.  This Bill provides an option for those who have either discounted palliative care or have been down the palliative care treatment path and have decided that for them, the current treatment is not providing them with the quality end of life that they desire.

It is concerning to see some of the language that those who oppose this Bill have used.  For example it has been suggested, "Legalising euthanasia goes against the core values of the medical profession and will radically change the doctor-patient relationship, ultimately undermining good clinical and palliative care. It will devalue the lives of the elderly and people living with disabilities, and increase the risk of abuse among the most vulnerable New Zealanders,”[4] This submission argues that in passing this Bill, rather than devaluing human life it is doing the opposite. It is valuing the rights of the individual to decide for themselves when their lives no longer have quality. 

With the right safeguards and training, the lives of the elderly and the disabled are no more in danger than they are now.  This Bill does not allow for others to decide when an elderly person or someone with a disability should end their life and it is critical that this remains the case.  The choice whether to make use of the provisions of this Bill should and must remain with the individual concerned, not caregivers or anyone else involved in their care.

Areas of Concerns

Not withstanding the writer’s support of the Bill in principle, there are some concerns that need to be addressed.

Firstly the broad nature of the terms set out in clause 4 (c) (ii) is of concern.  It currently states that an individual can seek assistance to die if they are suffering from “a grievous and irremediable medical condition,” and is experiencing “unbearable suffering that cannot be relieved in a manner that he or she considers tolerable.” The difficulty with this terminology is that the criteria could fit any number of conditions, many of which could be at the very least ameliorated with the right support and advice.  Consideration should be given to tightening the criteria so it only applies to conditions that will deteriorate over time or at the very least, make the tasks of daily living an intolerable burden.

The second concern relates to the medical opinions that must be sought under the Bill, and the lack of a requirement for a specific opinion from a mental health professional.  This is of particular concern because General Practitioners cannot be expected to have the expertise to fully ensure that a person seeking assisted death has considered all the factors relevant to the decision, even if that General Practitioner has been the patient’s doctor for many years.

The lack of such a requirement is even more puzzling because in many other areas, for example the use of assisted reproductive technologies to enable people to have children who would otherwise not have that opportunity, there is a requirement for the parties to receive counselling to ensure that that they fully appreciate the magnitude of the decisions and the consequences that flow from them. It seems unusual and remiss that such a requirement is not in place for when someone is making arguably the biggest decision of all, to end their life.  It is recommended that consideration be given to strengthening the safeguard requirements to require psychological input so that we can have confidence that people seeking this assistance have been made fully aware of the nature and consequences of these actions by a trained mental health professional and that the decision has been reached free of coercion or any other undue influence.

The final area of concern is the narrow window of time during which someone may take advantage of this Bill.  The Bill as drafted only allows for individuals to access assistance to die within six months of their expected death.  It is submitted that this window of time is too short and may have the unintended consequence of ruling out people who have become so debilitated that they are not able to communicate their wishes satisfactorily.  It might be that they could well be in a state that could have been avoided if they were able to take the option of assisted death at an earlier time.  It is suggested that if that window was widened to 12 months, this gives people the opportunity to make the decision at a time when they may feel the most able to do so.

Conclusion

In summary, this submission is in support of the Bill.  It has been said “Human dignity is innate to every person.”[5]  It most certainly is, and this Bill gives individuals the autonomous choice to decide for themselves when they wish to end their suffering with dignity.  I suggest amendments with regard to the criteria to access physician assisted death, the medical assessments, and the time frame in which physician assisted death can be obtained.  This is a Bill whose time has come.  It is time we give individuals the respect and dignity they deserve in their final days. 

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[1] Beauchamp T, Childress J, Principles of Biomedical Ethics, 2009, Oxford University Press, p 99

[2] http://www.telegraph.co.uk/news/religion/10964640/Bishop-uphold-sanctity-of-life-by-allowing-assisted-dying.html

[3] Ibid

[4] http://www.nathaniel.org.nz/component/content/article/16-bioethical-issues/bioethics-at-the-end-of-life/337-launch-of-care-alliance-a-coalition-to-oppose-euthanasia-and-assisted-suicide

[5] http://carealliance.org.nz/in-reply-to-supporters-of-the-end-of-life-choice-bill/