The Legal and Social Issues Committee of the Victorian Government tabled its final report on the End of Life Choices Inquiry in Parliament on June 9th. The 440 page report conveys the complexity of the issues under consideration.
The committee was tasked with
- assessing the practices currently being utilised within the medical community to assist a person to exercise their preferences for the way they want to manage their end of life, including the role of palliative care;
- reviewing the current framework of legislation, proposed legislation and other relevant reports and materials in other Australian states and territories and overseas jurisdictions; and
- considering what type of legislative change may be required, including an examination of any federal laws that may impact such legislation.
The key findings of the Report are:
- As a society, we are hesitant to talk about death, which is considered a taboo subject. This inhibits planning for end of life care, and may result in a person’s end of life wishes not being followed.
- Although most people in Victoria wish to die at home, in reality most of them will die in hospital.
- Demand for palliative care is steadily increasing, and is expected to continue to do so. At the same time, palliative care patients’ diseases and needs have increased in complexity. As such, Victoria’s palliative care sector is overburdened and needs better support from government.
- Despite Victoria having good palliative care services available, those who could benefit the most often receive care too late.
- Carers and the volunteer workforce are integral to Victoria’s palliative care system.
- Although the advance care planning process has proven benefits, there are low awareness and implementation rates for advance care plans in Victoria and Australia.
- Existing end of life care legislation is confusing in many ways, and causes uncertainty, particularly for health practitioners.
- The legal framework for advance care planning spans several Acts and some legal issues may rely on common law rulings. Substitute decision making provisions are confusing and poorly understood by doctors. In addition, the law does not provide certainty that a person’s wishes detailed in an advance care plan will be carried out when they lose capacity.
- Prohibition of assisted dying is causing some people great pain and suffering. It is also leading some to end their lives prematurely and in distressing ways.
- Instances of assisted dying are rare, even in jurisdictions where it is legal. Assistance in dying is, in the vast majority of cases, provided to people in what would otherwise be the final weeks of their lives.
- Government support and funding of palliative care has not declined when assisted dying frameworks have been introduced.
- Courts invariably impose lenient penalties without jail time on people who assist a loved one to end their life. This is true in Australia and in similar overseas jurisdictions.
- Everyone’s end of life care needs differ. It is important that Victoria has a system in place to cater for the needs of individuals, whilst ensuring that there are safeguards in place to protect vulnerable people.
Overview – Core Values for End of Life Care
The report outlines a set of 12 core values for end of life care. These include: the value of every human life, open discussion about death and dying, the right to make informed choices, person-centred end of life care, alleviation of pain and suffering, addressing the needs of families and carers, palliative care is an invaluable and life-enhancing part of end of life care, high quality end of life care should be available in all settings, non-discrimination in access to care, support and protection of vulnerable people, coherent and transparent law, and law should be followed and enforced.
The Committee has defined a set of shared core values for end of life care. These provide an understanding of the beliefs that underpin the Committee’s approach to this subject.
These are intended to assist in providing the reader with an understanding of areas of broad agreement that provided guidance for our discussions and for the drafting of this Report. These values are based on what the Committee has learned throughout the Inquiry process.
Every human life has value
Every individual person has inherent value.
Open discussion about death and dying should be encouraged and promoted
Death is an inevitable and natural part of life. It is human nature to fear death, however by acknowledging our own mortality through open discussions with health practitioners and family we can plan for our death.
People should be able to make informed choices about the end of their life
An adult with capacity has the right to self-determination. This is a fundamental democratic principle which should be respected. Information on end of life choices must be clear and accessible.
End of life care should be person-centred
The focus of medical treatment has shifted in recent times from a ‘doctor knows best’ mentality to patient-centred care. End of life care should be no different.
End of life care should address the needs of families and carers
The end of a person’s life is a very stressful time for their families and carers, and can take a toll on their physical and mental health. End of life care services should extend to and provide assistance to families and carers during this difficult time.
Pain and suffering should be alleviated for those who are unwell
Not all treatment is beneficial for those at the end of life. Treatment provided to a 20-year-old may not be appropriate for an 80-year-old. The goal of end of life care should be to minimise a person’s pain and suffering.
Palliative care is an invaluable, life-enhancing part of end of life care
Palliative care provides much needed pain relief for people during the end of their life, and provides comfort to their loved ones and carers. Palliative care often prolongs life.
High quality end of life care should be available to all people in all settings
People should be able to plan for death in their preferred setting.
Each person should be entitled to core rights in end of life care
All forms of discrimination in end of life care should be ended as far as possible, whether based on geographical location, physical condition, ethnicity or wealth.
Vulnerable people should be supported and protected
End of life care should focus on relieving pain and suffering. Safeguards need to be in place to ensure that vulnerable people are not pressured or coerced into making decisions that they do not want to.
The law should be coherent and transparent
Health practitioners and patients should be fully aware of their legal rights and responsibilities in end of life care.
The law should be followed and enforced
The purpose of end of life legislation should be to provide for end of life choices for patients and protection for doctors. Breaches of laws should be penalised appropriately.
49 recommendations are presented in the report, which covers three main sections:
1. Towards a community based approach to palliative care
2. Improving advance care planning
3. Legalising assisted dying.