On a daily basis Palliative Care Victoria receives distressed calls from people seeking help for a person who is dying and suffering needlessly.
A few days ago we received a heart-rending call from the neighbour of a couple in their 80’s seeking help. A man was dying in distress from advanced lung disease and his wife was struggling to care for him without support. He wanted to die at home. Their doctor had not referred them to palliative care and this call was made within days of his death.
A desperate grand-daughter called us late on a Friday because her grandfather was dying in a large hospital in uncontrolled pain. They were concerned this would continue and he would die in pain while waiting for the small, over-stretched palliative care team to respond.
Last week we received a distressed call from a person about their father who has Motor Neurone disease and lives in an aged care facility. His pain had not been controlled for two weeks. Poor pain management of people who are dying is a common theme in the calls we receive.
These are just some examples. In hospitals, aged care facilities, and homes across Victoria people are dying difficult deaths without receiving palliative care and the support their carers need. Many want to die at home, but most die in hospital. Those missing out include people of all backgrounds and ages, people living in rural areas and people with a range of chronic incurable diseases such as dementia.
Inadequate training of health professionals in caring for the dying person creates a reliance on a small specialist palliative care workforce that cannot meet the current need.
The fact that too many Victorians are dying bad deaths is not news. A number of these difficult deaths have been the impetus for calls to legalise euthanasia.
Public attention has focused on the quest for euthanasia without giving adequate attention to the solution that 99% of Victorians want – timely access to high quality palliative care.
The reality is that many Victorians benefit from improved quality of life and die with dignity and in comfort with the support of palliative care. But we need to make this readily available to everyone. Many people don’t know about palliative care, many are not referred, and gaps in services mean many miss out. Regrettably, although research shows that palliative care makes a positive difference in the months leading up to death, for many it is available only in the last days or weeks of life.
The Victorian Auditor General highlighted the need to improve palliative care in his April 2015 report. The End of Life Choices Inquiry Report in June 2016 included 29 recommendations to improve palliative care.
Victoria’s new End of life and palliative care framework released in August 2016 states that all Victorians are entitled to high-quality end of life care that relieves pain, distress and suffering and supports family and friends.
Much of the focus of the Victorian Government’s response to the recommendations of the End of Life Choices Inquiry is on its decision to introduce legislation that would legalise a physician-assisted death for terminally ill people who meet specific criteria. This will be welcomed by those who seek this.
However, the vast majority of Victorians do not want to die by a lethal dose of drugs. They want the right to choose and receive high quality palliative care.
Systemic failure requires urgent & comprehensive action
People dying in suffering should be given the same priority as a person experiencing a heart attack or other life-threatening event. Systemic failures to provide safe neonatal care or to meet ambulance emergency response times are addressed by Governments as urgent priorities.
Similarly, systemic failures in caring for dying people deserve to be addressed by the Victorian Government with as much urgency and priority. Euthanasia may become a choice but it is not the solution.
The solution requires substantial increases in funding to improve access to high quality palliative care and end of life care across Victoria. It requires urgent and full implementation of Victoria’s new policy framework as a priority along with the transparency of funding and service provision recommended by the End of Life Choices Inquiry.
Regrettably, increases in palliative care funding have declined in the last two years in spite of the recommendations noted above. Funding for palliative care in Victoria is around 1% of expenditure on public hospitals. To implement the recommendations of the Auditor General and the End of Life Choices Inquiry palliative care services need at least $50 million in additional funding each year, as well as substantial capital funding. The good news is that evidence shows that palliative care improves quality of life and results in better use of health resources. It is a win-win situation.
Without concerted and comprehensive action to address the systemic failures in how we care for people who are dying across Victoria there can be no genuine choice – we could only hang our heads in shame and mourn the loss of a truly compassionate society.