SPEECH TO AUSTRALIAN PALLIATIVE CARE CONFERENCE, MELBOURNE

THURSDAY 3 SEPTEMBER 2015

AMA VICE PRESIDENT DR STEPHEN PARNIS

**Check Against Delivery

I’m very pleased to be here today to speak on behalf of the Australian Medical Association about an important goal – achieving better End of Life Care for Australians.

In the space of only a few generations, we have seen dramatic increases in life expectancy.

Improved nutrition, the separation of our water supplies from our sewers, immunisation programs, improved therapeutics, and health literacy have all played their part.

A by-product of that success in prolonging life has been the increased prevalence of chronic disease, and the change in patterns of death and dying within Australia. Indeed, as a society, it is fair to say that many of us have become relatively quarantined from death.

Attitudes towards death within the medical profession have also changed over time. As doctors, we know a lot about death. When it comes to the fundamentals of diagnosis, treatment options, and disease progression, we understand what is available, and what is realistic.

As those treatment options have improved so much, it is understandable that many aspects of end of life care have been delayed and relegated down the priority list. But this has come at a price.

There is an increased reluctance on the part of so many Australians to contemplate the end of their own lives.

I also suggest that many members of the medical profession may be challenged in accepting the inevitable death of our patients. We may regard it as a shortcoming of our care and expertise, tending to measure success only in terms of saving life.

I cite the work of Professor Ken Hillman and Dr Magnolia Cardona-Morell at the University of New South Wales, who earlier this year suggested ten key barriers to appropriate end of life care. These include denial, over-specialisation, legal uncertainty, and a lack of available alternatives.

Last year’s report by Hal Swerisson and Stephen Duckett of the Grattan Institute, entitled “Dying Well”, also found a reluctance among health professionals to discuss death and dying.

They considered that the ‘hard discussions’ are often delayed or even avoided, leading to treatments that have little benefit, and resulting in patients and their families not being prepared for death.

And so, there is much that should be done to improve End of Life Care in Australia.

The AMA has chosen to focus on the following:

• the need for better access to palliative care across the healthcare spectrum;
• the need to increase the use of advance care planning; and
• the need for cultural and practical change within the medical and other health professions.

Access (resourcing, education, information)

Earlier, I referred to a quarantining of death from our collective consciousness. As part of that process, it has been tempting for many to assume that palliative care occupies only a small niche within our healthcare system. A few dedicated doctors, nurses and allied health professionals who work within a few hospices, to assist those who are within the last few days of their lives.

How necessary it is to refute those clichés, and to demonstrate not just what exists at present, but what could be achieved with optimal resourcing of end of life care.

Enhanced access to the best palliative care should span the entire spectrum of health care, from home, aged care facilities, and other community-based care, through to many hospital settings - and I include emergency departments, intensive care units, and outpatient centres as clear examples.

We do not wish to focus exclusively on the bricks and mortar aspects of palliative care for, in truth, the most precious resource we have is our human capital – and this is where we need to ensure we invest the greatest energy.

I will largely confine my remarks to the medical profession, but note that much of this would also apply to other healthcare professions.

When we consider the vast range of disciplines within medicine, it is clear that involvement in palliative care is a factor in so many. General practice, geriatric medicine, and oncology are clear examples, but so too are surgery, emergency medicine, paediatrics, and respiratory medicine, among others.

I suggest that, in the context of a patient faced with chronic disease from which they will ultimately die, it is a complex, demanding, but very rewarding task for a treating doctor to assimilate the clinical information, formulate management options, and engage in dialogue with their patient and their loved ones on the best course of action.

I am sure that this care can be enhanced via medical education, and continuing professional development.

Medical training can and should place a greater emphasis on palliative care. That in itself will improve access.

We acknowledge the work that is already being done by medical schools and the learned colleges, but we believe that more can be done to enhance the skill sets needed by doctors to confidently and professionally deliver end of life care.

There is no doubt that the best care is delivered by efficient, multidisciplinary healthcare teams.

Access to better end of life care will be improved by better communication, continuity, and coordination of care across the sector. In the hospital sector, we note and welcome the participation of palliative care physicians in multidisciplinary outpatient settings and departmental clinical meetings.

In community settings, much can be done to reduce the silo mentality that does adversely affect our health system. In that regard, the AMA is strongly supportive of programs such as Decision Assist and its work to support evidence-based care in Advance Care Planning and Palliative Care.

The issue of resourcing is one I must highlight. Australia has far too few palliative care specialist doctors and nurses. Palliative Care is too low and late a priority in hospital service provision, and community palliative services almost universally receive inadequate government funding, and are compelled to rely on goodwill and donations to get by on a shoestring.

I find it ironic that in an era of unprecedented scrutiny of the costs of health care, that the cost savings of good palliative care are so underemphasised.

Advance Care Planning

The AMA would like to see Advance Care Planning become a much more routine part of clinical practice, so that patients’ wishes and preferences for their health care are known and met.

This process can be part of a discussion with patients of all ages, within the primary care environment or hospital setting. This process respects the patient’s right to take an active role in their care, in an environment of shared decision-making between the patient and the doctor.

It may involve family members, friends and advisers, and others as required by the patient and the doctor.

While we recognise the increasing public awareness of Advance Care Directives – the more formal, documented and legal aspect of such planning - it is important that the community and health professions recognise that it is only a part of a wider process of ongoing reflection, discussion, and communication of healthcare preferences.

When such plans or directives actually are in place, we are concerned about their limited utility and availability.

I am an emergency physician, and I regularly encounter cases where shortcomings in IT systems, documentation, and even basic communication result in a patient receiving inappropriate care in the wrong setting.

Imagine the scenario of an elderly patient with metastatic malignancy receiving CPR treatment that is both futile and traumatic in an ambulance or emergency department – a scenario that I think is still far too common, and one that we can significantly reduce.

As an example, I note and commend the work done by Barwon Health and the former Barwon Medicare Local in recent years to improve information systems in their region regarding Advance Care Plans.

Beyond availability and utility, we also need to see greater consistency in Advance Care Planning and Directives across Australia.

Across the States and Territories, we see profound differences in the law, which only serves to undermine confidence and utility.

And we also see major differences in legislative or common law protections for doctors who seek to provide ethical and respectful palliative care.

In an era of increasingly defensive medical practice, these protections are necessary to support the avoidance or discontinuance of futile treatment, and ultimately good medical practice.

Cultural Change within the Medical Profession

It is telling that doctors are often quite clear in our own minds what treatment we would, or more likely would not, accept as part of our own end of life care.

While our medical colleagues and other health care professionals who work in palliative care do an exceptional job caring for patients and their family members, the culture of the medical profession as a whole can be heavily focussed on cure rather than care when it comes to patients with life-limiting illnesses.

The AMA wants to see a cultural shift within the medical profession itself, where dying is not regarded as necessarily a failure of care, but where the following measures are used as the parameters for successful care:

• Did our patient have as good a quality of life as possible?
• Were their wishes, values, and goals of care ascertained and respected?
• Were they supported by their healthcare team, whether in hospital or in the community, throughout their treatment, even as they transitioned from curative to palliative measures?
• Were their family members and carers supported as well?

Cultural change in this context requires a range of measures, with particular emphasis on education and awareness.

Doctors like to be in control of any given clinical situation. That control will be enhanced by clinical expertise, a strong ethical framework to underpin decisions, a relationship with their patients that is based on trust and confidence, and sufficient resources to obtain the best possible outcomes.

This is why the AMA advocates for medical education about palliative care to be given greater priority across the board – from the earliest aspects of undergraduate medical student training through to continuing medical education for senior doctors, and across the range of medical specialties.

This education clearly needs to emphasise the aspects of pathology and therapeutics required to confidently understand and treat life-limiting illness.

But there should be a particular focus on the communication skills required to successfully initiate and progress discussions about end of life care and advance care planning. For too many of us, we have simply “learned on the job”, by trial and error. I am convinced that we can do far better.

Awareness is often used as a motherhood term these days but, in the context of End of Life Care, it is indeed essential that we all work to raise the profile of palliative care – as part of ongoing discussions within the health professions, with the wider community, and with those who govern us.

There are still too many myths that need to be countered, such as the notion that palliative care only has its place when death is just a few days away.

In conclusion, I reiterate that the Australian Medical Association recognises that Australia’s Health System – acknowledged as a world leader in many regards – falls short of the mark in the recognition and provision of palliative care services.

The fact that 60-70 per cent of Australians would prefer to die at home, and yet only 14 per cent actually do, is a cause for concern, and a call to action.

I want pay tribute to our colleagues who work in palliative care.

They do an exceptional job in caring for the dying, individualising care to maximise quality of life.

But we cannot leave palliative care to this relatively small group. We need a well-distributed, accessible, and appropriately trained and skilled specialist and primary care workforce.

I close by drawing your attention to the 2014 AMA Position Statement on End of Life Care and Advance Care Planning as a resource to promote a cultural shift in attitudes toward death and dying, while advocating a range of policy positions on issues including palliative care, support services, decision-making capacity, advance care planning, workforce, and clinical settings.

The AMA Position Statement on End of Life Care and Advance Care Planning is at https://ama.com.au/position-statement/end-life-care-and-advance-care-planning-2014

3 September 2015

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