Now more than ever, palliative care needs our full support and to be understood. Here are some facts. We will all die and there is enormous fear about that process.
Only 1-2% will die under the new Voluntary Assisted Dying (VAD) Act, therefore, many patients will need palliative care; currently, only about 25% of dying patients will have access to specialist palliative care.
The WA Palliative Care workforce is inadequate, having less than half the Palliative Care Australia recommended number. System-wide changes are needed to train and resource specialist palliative care services so that we can all feel confident that we can live as well as possible and die comfortably when it is our time.
For clinicians, the legalisation of Physician Assisted Suicide and Active Voluntary Euthanasia (PAS/AVE) has caused confusion. End of life care now includes PAS/AVE and everyone is unsure about what palliative care is.
To be clear, the specialty of Palliative Care seeks to improve the lives of patients and their families by deliberate clinical interventions to relieve suffering, optimise quality of life and provide expert care of the dying. We do not engage in activities to deliberately hasten the process of dying.
In many research studies, effective and early specialist palliative care improves holistic quality of life (physical, emotional, social, spiritual) and prolongs survival. Palliative care is certainly not PAS/AVE. At the end of life, patients who receive skilled and compassionate palliative care, die because of the disease, not because of medical intervention.
As clinicians working in palliative care, we are concerned for the vulnerable who can now access VAD much more easily than they can access palliative care. Palliative care clinicians see and hear the stories of “bad deaths” and these stories anger and sadden us because they can be prevented. Vulnerable patients in our hospitals are dying in pain or gasping for breath because they are not receiving the specialised care
they need.
Vulnerable elderly patients who are in the last few months of life repeatedly present to emergency departments for treatments that are essentially futile. Vulnerable patients dying of chronic and incurable illness suffer for months, even years. These patients need better health care to live better, rather than easy access to PAS/AVE.
For decades, clinicians and researchers have been aware of patients who have made comments like, “I can’t go on like this…”, or “Is there something you can give me to help me end this…”. This request for hastened death should be explored with concern and sensitivity.
For the majority, these are desperate pleas for help because they have suffered immense loss of identity, purpose and will. Most patients want to keep living if they can live well. Therefore, for patients with progressive life-limiting illness who are suffering, a validated screening tool like The Surprise Question (would you be surprised if this patient died in the next 12 months?) can be helpful to trigger an outpatient referral to a specialist palliative care clinic at any of the metropolitan tertiary hospitals (contact the switchboard and ask for palliative care).
The Joondalup Health Campus now has a public inpatient unit which opened recently. For country patients, each region has a palliative care nurse co-ordinator. After-hours advice is available for clinicians on ph:1300 558 655.
However, if a patient is seeking VAD with a clear and unambiguous request, provision of the State-Wide Care Navigator Service number (ph: 9431 2755), a First Request Information Pack and completion of a First Request Form (scan the QR codes below) will fulfill the legal obligations of doctors who have not completed the six-hour online training to provide VAD. More information is available online.
Key messages
- Death is inevitable but generates fear in our society
- The new voluntary assisted dying laws have caused confusion
- Increase in palliative care workforce is needed to ensure best end of life care.
Author competing interests – nil
ED: Dr Eng is a palliative care physician and Ms Angus is a palliative care nurse practitioner