STATEMENT BY DEIDRE CARTER, MP

PRIVATE MEMBER’S BILL: DRAFT NATIONAL HEALTH AMENDMENT BILL

THE LEGAL RECOGNITION AND ENFORCEMENT OF ADVANCE DIRECTIVES

Dying is a natural and inevitable part of life.

Unless we die an unnatural death, we will go through a natural dying process.

For some, it will be peaceful and dignified; for others it will be filled with pain, distress and suffering.

We do not know which it will be.

Coupled hereto advances made in medical science and especially in the application of medical technology have resulted in patients living longer.

For some patients this signifies a welcome prolongation of meaningful life, but for others the result is a poor quality of life which inevitably raises the question whether treatment is a benefit or a burden.

Worldwide, increased importance is being attached to patient autonomy.

Recent events in our own Country have put this question in the spotlight:

· In August 2014 Parliamentarian Mario Oriani-Ambrosini, terminally ill, in the last stages of lung cancer hastened his imminent death by shooting himself.

· Our revered Madiba lingered for months hooked up to machines after doctors declared him to be in “permanent vegetative state”.

· In July 2014 Archbishop Emeritus Desmond Tutu declared himself to be in favour of assisted dying should he ever find himself terminally ill and/or in a situation of intractable, unbearable suffering.

Advance HealthCare Directives

The need has therefore arisen to consider the protection of a mentally competent patient’s right to refuse medical treatment.

Furthermore, any competent person may foresee the possibility of becoming incompetent when they enter the terminal phase of the dying process, and may wish to control their healthcare decision- making as they are able to do when they are competent.

Advance health care directives are designed to enable competent persons to express their preferences and give instructions about such possible future situations – through a Living Will or a Durable Power of Attorney for Healthcare

The Objective of this Private Member’s Bill, the National Health Amendment Bill, is to ensure the ‘legalization’ – the recognition and enforcement of Advance Healthcare Directives – within the National Health Act.

This is not rocket science and neither is it that radical.

As matters stand:

Chapter Two of the National Health Act provides for the ‘Rights and Duties of Users and Health Care Personnel;
Section 6 of the Act provides for the right of a user to refuse health services; and
Section 7 provides that a health service may not be provided to a user without the user’s informed consent.

(Note: An extract from Chapter Two of the National Health Act is attached)

Centenary of the Birth of Mandela

It was under Madiba’s tenure as President of the Republic of South Africa that the South African Law Reform Commission was appointed to look into issues pertaining to End of Life Decisions/ Dying with Dignity.

In 1999, the Commission, chaired by the late Justice Mahomed published its findings and recommendations.

Amongst the recommendations made by the Law Commission was the ‘legalisation’ of Advance Directives – the Commission even drafted a Bill – the End of Life Decisions Bill.

It is unfortunate that this important document and its recommendations were not perused by Government’s Executive or by Parliament (the legislature).

It thus seems appropriate, as we mark the centenary of the birth of the founding President of our Constitutional Democracy, Nelson Mandela, to re-initiate the ideals related to End of life Decisions (and Dying with Dignity) that were initiated during Nelson Mandela’s Presidency but never finalized.

(NOTE: Potions of the SALC report including the then draft End of Life Decisions Bill is included)

A Constitutional Imperative

In terms of our Constitutional Democracy the state has the obligation to respect, protect and promote its citizens’ fundamental human rights as enshrined in our Bill of Rights.

We believe that the recognition of Advance Directives gives effect to the following provisions of our Bill of Rights:

The Right to Dignity– the right of patients to have their dignity respected and protected);
The Right to Life– in respect of which death is an undeniable and ultimate part; and
Freedom and Security of the Person– not be treated in a cruel, inhuman or degrading and to ensure bodily and psychological integrity and security and controlling of one’s own body (Section 12(2) and 12(2)(b) of the Bill of Rights)

The Bill – The National Health Amendment Bill

The National Health Act, 2003 in its current format does, to an extent, contain provisions regarding advance health care directives in that in one provision of the Act, a “living will” is inferred and in another, provision is made for the appointment of a substitute healthcare decision-maker.

However, it is argued that these provisions, while a step in the right direction, are inadequate for a number of reasons.

These reasons, inter alia, include:

That a “living will” is not expressly recognised;
That the purpose, scope and format of these advance health care directives are not explicitly set out;
That it is not clear whether they may, in certain circumstances be overridden by family or medical practitioners; and
Whether persons acting upon the directives (such as Doctors) are immune from civil and criminal prosecutions.

The National Health Amendment Bill, 2018, will therefore provide for the legal recognition, legal certainty and legal enforceability regarding advance health care directives such as the Living Will and the Durable Power of Attorney for Healthcare.

(Note: The notice of intention to introduce the Bill which includes an explanatory summary of the Bill as published in the Government Gazette is attached)

Public Participation/Representation

Interested parties and institutions are invited to submit written representations on the proposed content of the Draft Bill to the Speaker of the National Assembly.

Representations must be submitted by 22 AUGUST 2018

Representations can be delivered to the Speaker, New Assembly Building, Parliament Street, Cape Town; mailed to the Speaker, P O Box 15, Cape Town 8000 or e-mailed to speaker@parliament.gov.za and copied to dcarter@parliament.gov.za

Minster of Health

In preparing the Bill, the views and comments of the Minister of Health were sought.

Of particular concern was the Minister’s assertion in his written reply that:

“withholding and withdrawing life-sustaining treatment is a decision taken by the treating doctor and must only be based on his or her clinical evaluation and not on anybody’s request“.

The Minister’s reply is misguided, wrong and therefore unacceptable as public policy for the following reasons:

It contradicts the National Health Act 2003;
It fails to respect rights in the Bill of Rights;
It disrespects basic ethical principles, such as self-determination, respect and dignity;
It contradicts the judgment of a full bench of the Supreme Court of Appeal (SCA) of 6 December 2016;
It disregards the recommendations of the South African Law (Reform) Commission’s final report of 1999;

The Minister’s answer (if it represents official public policy) is not only wrong in law and ethics, but could cause great harm.

I have written to the Minister seeking a meeting with him to discuss his reply and the Bill.

The Draft Bill in course of preparation, on the contrary, is in line with 1-5 above.

(Note: A copy of the questions put to the minister and his reply is attached. Also attached is our letter seeking a meeting with him)

Dignity SA

The Congress of the People supports the work and advocacy of Dignity SA and this Bill represents a joint initiative between Dignity SA and COPE.

On a personal level, I wish to dedicate this Bill to Lee Last of Dignity SA – a ‘Joan of Arc’ in the struggle to ensure the right to die with dignity

Furthermore, COPE welcomes the fact that Dignity SA will be hosting the World Federation of Right to Die Societies Biennial Conference (2018) from 6 -9 September in Cape Town and call upon the media to cover this important international event.

Part of a Larger Debate

Without wishing to conflate matters – this Bill is restricted to the matter of Advance Directives – I hope that this Bill will open the debate around other issues affecting the right to die with dignity – including the matter of active euthanasia

Non-Partisan – The Progressive Realisation of our Human Rights

Finally, let me state that I view this Bill as being non-partisan and hope that it will not be viewed and contested party-politically.

I view it a part of the process of fully realising the content of our Bill of Rights, especially those pertaining to the Right to Dignity, Life, and Freedom and Security of the Person.

If anything, Government (the Executive and Parliament) should be supportive of this initiative.

COMMENT TO GOVERNMENT ON THIS BILL