Amid the debate of the WA Voluntary Assisted Dying legislation, palliative care groups found a unique moment to advocate. At a recent conference in Perth it came down to a human right.

The Oceanic Palliative Care Conference in mid-September was held in Perth against a volatile social and political backdrop of the WA Voluntary Assisted Dying (VAD) legislation, which was makings its way through the state Parliament.

While palliative care physicians and organisations have fought hard to separate palliative care and VAD in the debate, it has sparked a greater awareness of palliative care and the need for government to resource it more appropriately.

Without going into the ‘he saids’, ‘she saids’, or making assumptions on why politicians do and say what they do and say, more cash (and critics will argue too little) has been put on the table.

The state budget in May included a $41 million end-of-life choices and palliative care services package. At the time, Palliative Care WA expressed concern as the specific allocation of that money.

As the VAD Bill progressed to the Upper House (we went to Press before the final vote), the government announced a further $17.8 million for palliative care projects based on the recommendations of the Joint Select Committee Report on End of Life Choices.

The breakdown of that funding is:

  • $9 million towards an additional 10 inpatient palliative care beds in the northern metropolitan suburbs;
  • $6.3 million for the expansion of community-based services across both metropolitan and regional Western Australia; and
  • $2.5 million for enhancing rural and regional palliative care services by improving governance.

The Premier and Health Minister issued a joint statement that indicated how some of the money would be spent, with the funding of 61 full-time equivalent (FTE) staff to be phased in across regional WA, apparently tripling staff for palliative care support in regional WA.

“This includes the establishment of new specialist district palliative care teams comprising medical, nursing, allied health and Aboriginal health workers across all regions. As part of the package, $3 million will enable 24-hour support via the WA Country Health Service telehealth hub to ensure staff, patients and families have access to nursing care for patients who wish to die at home,” the statement said.

In progress is a 38-bed residential aged and palliative care facility in Carnarvon, for which $16.6 million has already been allocated.

This table shows what the regions will receive:

$3.6 millionGoldfields4.18.3512.45
$3.5 millionGreat Southern38.4511.45
$4.4 millionKimberley3.59.9513.45
$4 millionMid-West and Gascoyne2.710.8513.55
$4.9 millionPilbara1.6511.8013.45
$2.5 millionSouth-West115.9016.90
$2.7 millionWheatbelt5.36.1511.45

*Final FTE and configuration will be determined as the models of care are established.

In September the Australian Institute of Health and Welfare (AIHW) reported that in 2017-18, WA had the highest rate of subsidised palliative medicine specialist services in Australia with 762.3 per 100,000 population), more than double the national average rate (354.5). WA also accounted for the highest population rate of palliative medicine case conferences (90.5 per 100,000 population), followed by New South Wales (65.5).

So, while there was some local action on palliative care in the political corridors, there was also a lot of global thinking at the Oceanic conference, which presented an Indo-Pacific perspective on issues such as access, ethics and rights.

A feature of the conference was a panel discussion on the subject of ‘Palliative care is a human right!’.

In the preamble, it stated that the World Health Organization (WHO) had explicitly recognised palliative care under the human right to health.

“Worldwide, only about 14% of people who need palliative care receive it, and 80% of the world’s population don’t have access to morphine. The panel will discuss what can be done to improve these statistics and ensure that palliative care is on the agenda for human rights campaigns and that the needs of under-served populations are met.”

The panellists included facilitator, Prof Fran Baum, who is the chair of Public Health and Director of the Southgate Institute of Health, Society and Equity at Flinders University; Dr Frank Brennan, PallCare Law and Palliative Care Physician based at Calvary, St George and Sutherland Hospitals in NSW; Liliana De Lima (USA), Executive Director of the International Association of Hospice & Palliative Care (IAHPC); Maria Osman, The Humanitarian Group, Member of WA’s Ministerial Expert Panel on Voluntary Assisted Dying (VAD); Dr Christian Ntizimira (Rwanda), Masters Candidate at Harvard Medical School, Department of Global Health and Social Medicine, City Manager, Kigali, C/Can 2025 at Union for International Cancer Control (UICC) and the former Executive Secretary of the Rwanda Palliative Care and Hospice Organization (RPCHO); and Dr Barbara Daveson, National Manager, Palliative Care Outcomes Collaboration & Senior Research Fellow Australian Health Services Research Institute, University of Wollongong

Is Palliative Care a human right?

Frank Brennan tackled this first question.

“Often people see human rights in terms of civil and political rights – the right to free assembly, the right not to be tortured, the right to join a trade union. But in addition to those, there are designated and quite specific economic, social and cultural rights. And among those rights is the right to health.”

“As that concept has fleshed out, there are core elements of affordability, acceptability, accessibility and quality of care irrespective of the resources of the signatory countries.”

He said that broke down to three key points:

  • No discrimination in access to health.
  • Essential medications must be provided.
  • There needed to be a national policy on pain and palliative care.

So, every signatory has a duty to achieve these things.

What action needs to be taken to improve access to palliative care?

Barbara said it was essential to have national end-of-life care policies or palliative care policies.

“And we need to ensure that government officials involved in making those policies look at research, knowledge exchange, enhancing and mobilising workforces, sustained and adequate government funding and also a national platform for outcomes such as Palliative Care Outcomes Collaboration (PCOC).”

“We know, that the income of a country is a good indicator for palliative care availability and also quality. There are vast differences internationally between the low-and-middle income countries compared with high-income countries. Pain relief and palliative care services is an absolute immediate priority for those countries. It’s the basic minimum.”

“High-income countries which represent 15% of the global population constitute 94% of the global opioid consumption. We know that the majority of children, 98% of them internationally, 15 years or younger, are dying in low-and-middle income countries with serious health-related suffering. It’s an immediate priority.”

“We know from PCOC that palliative care needs to be integrated into primary care and social care to address inequitable distribution. PCOC Australia is moving into primary care and residential aged care and working with service partners to look at sustainable, innovative models to drive improved outcomes for patients, residents and their families.”

“We know from our data that the palliative care provision that does occur is disproportionately allocated in high socioeconomic status areas compared with low ones. The trends show that palliative care service activity occurs more in the major cities than elsewhere. And we know that Aboriginal and Torres Strait Islander people are generally underrepresented in our palliative care service data.”

“We need to move to an outcomes-focused agenda because if palliative care is a human right then it is really about achieving the highest attainable standard of care for people. We’ve got an opportunity now as a sector to raise the bar and embrace an outcomes agenda, moving beyond just a discussion about palliative care availability, which is still extremely important.”

Access for CALD communities

Maria Osman addressed this issue from a human rights perspective.

“Australia is one of the most culturally diverse countries in the world. We have over 300 ancestries, 300 languages, diverse faiths and diverse religions.

“Australia does not have a Human Rights Act. Some states do – Queensland and Victoria – but nationally there is no framework in which we can drop down those policies and procedures that we need to implement.”

“That makes it an enormous challenge if you are a service provider attempting to meet the nation’s need and an enormous challenge for the service users and their families.”

“Leadership is essential as is engagement. The presentation from the Mary Potter Hospice in New Zealand offered the perfect explanation of culturally competent care. And I’d love to transpose that here, because often what happens is that policies and facilities are developed and then there’s an afterthought about those who are left out – the vulnerable groups in our community.”

“There’s a saying from the disability sector, ‘nothing about us, without us’. We need to ensure we have that diversity around the table when decisions are being made about palliative care and take on board the concept of substantive equality.”
Maria called for role models for ethno-specific services because they were all complex communities, so funding for grassroots, community-based groups was essential for these diverse populations. She also called for action on institutionalised racism.

“I’m of Somali heritage and I have lived in Australia for 35 years and institutional racism is on the increase. We need to look at how we deliver care to patients from those diverse communities so they feel safe and comfortable in those environments.”

The Rwanda Story

Christian shared how his country set about re-establishing a health care system after years of war.

“To build the health system, we first needed to build the nation. It was imperative for the government to offer leadership, the people had to show resilience and there had to be justice, reconciliation and forgiveness.”

“Those elements are fundamental. So, when approaching the rebuild of the health system, the health minister said that every policy and initiative had to be completely integrated and palliative care was no exception. He told me that there was to be no parallel system.”

“So, from the beginning we worked with all partners and colleagues.”

“Secondly, we needed to invest in people. We don’t have mining, we have coffee and tourism, so a lot of investment has gone into people integrated throughout. So home-based care practitioners and community health workers in palliative care was one of the keys.”

International Association of Hospice & Palliative Care

Liliana de Lima in her role as executive director of the IAHPC said that access to affordable medicines was one of the core issues for the association.

“Our research focuses on access to medicines and the use of opioids and their availability and pricing throughout the world. This is an enormous issue for many countries. Another focus is education and advocating for palliative care to be adopted into undergraduate health curricula, as well as the creation of specialty programs in countries where there are none. And finally, information dissemination.”

“Through IAHPC advocacy palliative care has been included in the Convention of the Rights of Older Persons. It is the only legally binding document right now in the world that mentions palliative care specifically. Currently it’s regional, it only covers the Americas but we hope the Human Rights Council will eventually adopt it.”

“But all these documents and all these beautiful resolutions and conventions are nothing if they don’t benefit the patient. And how do we translate that?

Everyone sitting here plays a role. We need everybody on different stages, and with different skills, capabilities and connections to work together. But unless these efforts reach the patient level, we’re not doing anything. It’s just going to be a piece of paper.”

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