Support for the End of Life Choice Bill

New Zealand is currently considering David Seymour’s End of Life Choice Bill through the Justice Select Committee process. My submission is below in its entirety.

Support for the Bill
I support the intent of this Bill because it emerges from a compassionate approach to human suffering and moves towards a society where every person has the right to choose to die.

Concerns
However, the way the Bill is currently framed leans heavily towards physical conditions and the involvement of the medical profession in the individual process of dying, thereby taking away the autonomy of a person to choose death when they consider it be right for them.

Given that individual autonomy is enshrined in our western system of democracy and that in Aotearoa New Zealand successive governments have encouraged the notion of self-determination, this Bill, despite its good intent, could be seen as paternalistic, reducing people to an immature or patient state after they have been increasingly expected to take individual responsibility throughout their lives.

Personal and professional approach
My views are personal, although they are informed by theological education, training as an Anglican priest and 15 years as a professional chaplain, the last six of these as Ecumenical Chaplain and then Spiritual Care Coordinator at a District Health Board. I also write regularly about what we mean by spirituality and God in our world that is increasingly secular and beyond the control of religion, whilst being more spiritually and religiously diverse.

I approach this situation from the perspectives of being grounded by the process of intense listening to people in varying stages of existential distress and the academic work around spirituality in healthcare. What I mean by spirituality is encapsulated in this definition:

“Spirituality is a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred. Spirituality is expressed through beliefs, values, traditions, and practices.”Puchalski et al, 2014

Central to that listening work and academic base is the task of meaning-making and the importance of that as a person constructs reflects on or deconstructs their life. In my experience, existential suffering is experienced when meaning and purpose are diminished in some way or another. Not being able to make meaning of the life one lives is one of the reasons people want the right to die, regardless of whether or not they are suffering from a diagnosed medical condition. This may also occur in situations of mental suffering and for people younger than 18.

Compassion recognises that I am more than a condition
Personal autonomy, whilst an ongoing philosophical conversation, generally includes the ability and right to make choices for one’s life, or put another way, having agency over one’s own being. People come at these things from a variety of standpoints, family, whanau, community, religious or philosophical positions but, however they do this, there is some meaning making attached to their process.

How we see a person in this process is, therefore, of ultimate importance. A person is not one dimensional, not only a physical or psychological condition but a whole, interactive collection. This is often referred to as the bio/psycho/social/spiritual approach and in New Zealand has been further illustrated by the Te Whare Tapa Wha model of personhood referring to the four walls of a human house, all of which need to be working for health to occur. Similarly, all of those things need to be included in a person’s decision to end life.

To hold this important process only within the legal and medical framework is to rob it of the spiritual importance it holds within the human condition. Consequently, it is important to ensure that people making the decision to end their lives are accorded the dignity to be treated as integrated, autonomous human beings, rather than medical cases or conditions under the control of the medical profession.

For this reason, I offer a definition of compassion that may be useful to ensure we have a shared understanding of what is meant by compassion, given that, like spirituality, these things can mean different things to different people. Compassion then is:

A virtuous response that seeks to address the suffering and needs of a person through relational understanding and action. Sinclair et al, 2017.

Main Provisions of the Bill
Accordingly, I would alter the Main Provisions of the Bill to read:

The Bill defines a person eligible for assisted dying as someone who:

  • Is aged 18 years or over
  • someone under 18 years who is supported by family and has independent representation throughout the process
  • Has New Zealand citizenship or is a permanent resident
  • Experiences unbearable suffering that cannot be relieved in a manner that he or she considers tolerable
  • Has the ability to understand the nature and consequences of assisted dying.

Process
At present, the process is concerned with medical and legal technicalities and this is too narrow. It keeps anyone wishing to end their life under the power of the medical profession, who effectively become the gatekeepers to any right to die. Whilst the medical profession are important contributors to this process, their role needs to be that of a consultant to the individual making their own decision to end life, not the decision maker. If we are to have a compassionate, person-centred approach to end of life choices then the responsibility must lie with the person who is suffering, not with a professional.

To help with this important process, I suggest a multi-disciplinary team approach, rather than the combination of medical practitioners, specialists in mental health and pharmacists. People involved need to demonstrate significant competence in deep listening and an understanding of humanity including philosophical, spiritual and wisdom traditions that acknowledge the existential nature of humanity that seeks meaning.

The purpose would be to enable compassionate, listening and dialogue to unfold with the suffering person, and anyone else they consider needs to be involved so that all of the issues are traversed in a nurturing and accepting way. In this process, some people will decide not to go ahead. Similarly, some people may decide to wait. Others will be sure they are ready to die. Whatever the decision, it needs to be made by the person, not the professional.

Reporting/Bereavement Support
Bereavement starts before death and continues in its own unique way for each bereaved person after the event. This will be the same around end of life choices. Whilst we need to be concerned about medical and legal reporting requirements, a compassionate community also needs to be concerned with care of the bereaved and to ensure we are handling this properly.

The MidCentral District Health Board Palliative Care Guidelines point out in their underlying principles that most people have resilience around death, however, family, whanau, and friends matter, as does flexibility, good communication, and information. Having a multi-disciplinary team involved in decisions to end life will also provide the opportunity to offer pastoral care to family, whanau, and friends at the time of death, assess whether further assistance will be needed and to ensure that people are followed up. Recording these matters and auditing against them will help ensure a compassionate person and family centred approach, whilst retaining the autonomy of the individual person.

Finally
I want to acknowledge the Select Committee role in hearing submissions on this important matter and to recognise the vulnerability that this brings for you, personally and collectively. It is in that mutually vulnerable human space that compassion most often resonates. Thank you for being prepared to sit there in order to hear our submissions.


I have more writing on euthanasia and the right to die in:

Voluntary Euthanasia: an unfamiliar pilgrimage and
Shared vulnerability: the key to soulful and just end of life choices.

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