In this latest edition of The Health Wrap, Associate Professor Lesley Russell reports on New Zealand’s new “wellbeing budget”, the latest news in palliative care, and moves to limit women’s access to abortion in the United States.
She also shares some useful insights on leading large scale change in health and social care, and ends on a high note with the Mutitjulu Band.
Lesley Russell writes:
This week New Zealand Prime Minister Jacinda Ardern brought down what she has called her “wellbeing budget”. You can access the budget papers here and statements from government ministers about what is included in the Budget (much of which was announced ahead of time) here. You can compare these commitments to what New Zealanders were hoping to see here.
Ardern outlined what she meant by a wellbeing budget at a Davos Forum in January, speaking about the need to look beyond the nation’s economic strength and GDP growth to “the quality of that economic activity and how it has been shared.”
Ardern further stated: “Nobody wants to live in a country where, despite a strong economy, families are homeless, where our environment is being rapidly degraded, and people with mental health issues do not receive the support they need.”
The Ardern Government’s budget was developed using the Treasury’s Living Standards Framework, which has some 60 indicators. The idea is that a budget is no longer just about crunching the numbers on economic data, but is also about addressing a variety of social indicators in search of long-term solutions and the consideration of intergenerational benefits.
Sigh! If only we could hear such sentiments here on this side of the ditch or see statements such as this on the Australian Treasury website!
As a major example of what that new framework will produce, several days ahead of the budget Ardern announced NZ$320 million to bolster services for victims of domestic and sexual violence.
This is the biggest single investment ever made by a New Zealand government on this issue, aimed at tackling what Ardern called one of the nation’s “most disturbing, most shameful” problems. If Australia was to commit this much on a dollar equivalent and population basis it would amount to some $1.6 billion. Sigh again!
Of course, not everyone agrees with this approach. Economic sceptics have labelled it “just a piece of glossy window dressing on a standard budget”. The Nationals have accused the Ardern Government of dropping their rigorous investment criteria and “valuing contact with neighbours over avoiding diabetes”.
If you are an Ardern fan, you will enjoy this opinion piece she wrote earlier this year for the Financial Times about the economics of kindness or what in the Maori language is called kaitiakitanga or guardianship.
National Palliative Care Week (May 19-26) has just concluded, last month was National Advanced Care Planning Week (April 1-5), and the Australian Institute of Health and Welfare has just released an updated edition of their Palliative Care Services web report which shows rising numbers of palliative care patients are dying in hospitals despite the majority wanting to spend their final days at home, so I thought it would be good to look at some recent issues in this area.
This is a part of healthcare that does not get the attention or the resources it deserves.
It is estimated that of the 160,000 Australians who die every year, as many as 120,000 could benefit from palliative care services, but currently only around 40,000 people do so.
The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (You can read the complete definition here.)
While palliative care can be provided to patients in a variety of settings, a distinction is commonly made between care provided in hospitals (includes hospices or dedicated palliative care wards) and care provided in the community (such as in the patient’s home or in residential aged care facilities).
The National Palliative Care Strategy 2018 was endorsed in February 2019 by all Australian health ministers. This strategy succeeds the 2010 version, which was evaluated in 2016.
The evaluation report is mildly worded, but it is clear the 2010 strategy was lacking in key areas. These include:
- The lack of defined baseline measures, measurable performance indicators, and an accountability framework.
- No effective inter-jurisdictional mechanism for planning and policy development which hindered the development of a nationally consistent approach to service delivery.
- No nationally consistent data set that could provide insight into the provision, quality and effectiveness of palliative care services
- No efficient mechanism for collecting data regarding palliative care service provision in community and primary care settings.
- Significant barriers to access to palliative care services (and specifically services that are culturally appropriate) for numbers of people within the population, particularly for Aboriginal and Torres Strait Islander peoples.
- Insufficient consideration of the needs of people from a range of vulnerable populations, including the homeless, people living with disabilities, new migrants and people from culturally and linguistically diverse (CALD) backgrounds.
- No mechanisms to address workforce shortages, training and capacity issues.
- A need for continued funding for research and information dissemination projects.
It is not at all clear that the 2018 strategy addresses these issues, in whole or in part. The Implementation Plan for the Strategy is yet to be developed.
In February this year, Palliative Care Australia released their own strategy document Palliative Care 2030: working towards the future of quality palliative care for all.
This calls for palliative care to become a National Health Priority. It also calls for a greater emphasis on workforce and training needs, for telehealth models to help rural and remote areas have access to palliative services, for a review of MBS items for palliative care specialists, and for increased research funding to strengthen the evidence base.
There is a growing need to assess what is available and to better integrate services across palliative care, disability care and the NDIS, and aged care settings.
Hopefully the issue of palliative care will be addressed as part of the recommendations from the current Royal Commission into Aged Care Quality and Safety. Regrettably the new Aged Care Quality Standards don’t even mention palliative care.
If you are interested in these issues, the End of Life Directions for Aged Care (ELDAC) website is a useful resource.
The intersection of palliative care and assisted dying is something that will come to the fore as Victoria implements its Voluntary Assisted Dying program, beginning in June.
A report commissioned by Palliative Care Australia and released last October found that in overseas jurisdictions where assisted dying legislation has been enacted, the palliative care sector has actually benefitted from increased attention.
The report states that “implementation of legislation [for voluntary assisted dying] may drive a stronger focus on upholding patient choice and autonomy, and there may be opportunities to introduce system improvements in palliative care, either as a direct or indirect consequence of the planned implementation of assisted dying”. There is a separate report that looks at learnings from assisted dying in Canada and the United States.
An issue worth noting here is that of the ability of palliative care patients (and their doctors) to access pain medications. The increased restrictions on opioid prescribing mean it is increasingly difficult for many palliative care patients (especially those in the community) to have sustained access to needed pain relief, and in some cases their doctors have been investigated for inappropriate prescribing.
A position statement on this issue was released by 13 peak health organisations on 9 May. Pain management at the end of life is included in the second edition of Pain in Residential Aged Care Facilities: Management strategies, which has just been released. However, this can only happen effectively is there is a stock of medicines and the people to administer them available 24/7 – a situation which rarely is the case.
Finally, even as these topics of palliative care and assisted dying are getting more attention, a recent survey shows that most Australians are not planning for their end-of-life care preferences.
While 79 percent think that this is important, only 25 percent have talked with family and only six percent have talked with a doctor about this. A 2015 paper in The Medical Journal of Australia outlined the mix of services that could better meet end-of-life care needs for little additional cost and made the case that preferences for end-of-life care should be fully articulated.
For further information on this topic, see Section 6:18 of the AIHW report on Australia’s Health 2016 and Chapters 3-4 of the Productivity Commission Inquiry Introducing competition and informed user choice into human services.
Growing attacks on women’s reproductive rights in the United States
One of the keys to President Donald Trump’s election in 2016 was his promise to conservative white evangelical voters that he would give them a more conservative US Supreme Court (SCOTUS) that would deliver rulings more in keeping with their beliefs on a raft of subjects from religious freedoms to abortion.
He has delivered on that commitment by appointing two conservative judges, Neil Gorsuch and Brett Kavanaugh, to the nine-member SCOTUS, giving conservatives a crucial 5-4 majority.
This has energised evangelical voters (who do not seem at all concerned about Trump’s moral character) and especially the anti-abortion movement.
Across the board, the Trump Administration has taken steps that impact adversely on women’s health.
Moreover, these attacks are not limited to the US but also extend globally to organisations that receive US aid (much of which has now been rescinded).
Over recent months a number of “red” (majority Republican) states have enacted anti-abortion legislation, which is specifically aimed at getting a case in front of SCOTUS and delivering the “holy grail” of abortion foes: an overthrow of the landmark 1973 Roe v Wade ruling which guarantees a woman’s right to end her pregnancy.
The Trump Administration has provided an environment that is seen by the anti-abortion movement as a once-in-a-generation chance to overturn a ruling it has always detested but that has long been accepted by most Americans as a fundamental right.
Most egregiously and most recently, the (female) governor of Alabama signed into law a bill that makes abortion a crime at any stage of pregnancy, with no exceptions for rape or incest. Any doctor in Alabama who performs an abortion will be liable for up to 99 years in prison.
Some eight other states, including Georgia, Kentucky, Mississippi and Ohio, have also outlawed abortion after a doctor can detect an embryonic heartbeat (ie around six weeks, before most women know they are pregnant).
A recent article pointed out examples showing that many of the people (mostly men) who have legislated these bills seemingly don’t know enough about how women’s bodies work to pass a high school health class.
Interestingly, the US abortion rate has fallen dramatically over the past decade. A new report from the Centers for Disease Control and Prevention shows that the national abortion rate declined 26 percent between 2006 and 2015, hitting the lowest level that the government has on record.
This has been attributed to a decline in teen pregnancies and better use of contraception by young adults. But getting an abortion is increasingly difficult in many parts of the United States; for example, Mississippi has only one abortion clinic and it appears the last clinic in Missouri is about to close .
To date, none of the draconian restrictions in these new bills has gone into effect, either because of delays built into the legislation itself or legal challenges. Public health experts are concerned about the public health crisis that looms if and when they do.
This is because the states with the most restrictions on access to abortions are also those with the highest rates of maternal and infant mortality. There is not a direct connection, but abortion access is a proxy for access to healthcare and education and correlates with poverty.
The defunding of Planned Parenthood clinics will hit poor women hardest in terms of access not just to abortion but to a range of essential healthcare services.
However, despite the steady erosion of abortion rights in conservative Republican states, national support for the Roe v Wade ruling is strong.
An NBC/Wall Street Journal poll last year found 71 percent of Americans did not believe Roe v Wade should be overturned, including 52 percent of Republicans. It was the highest level of support since that poll began in 2005.
These issues will continue to play out ahead of the inevitable SCOTUS challenge and the 2020 presidential campaign.
What is needed for large scale change in health?
Amid the pontificating and debate about the political value or otherwise of offering major policies as part of an election campaign, perhaps it is useful to consider what is needed to make such reforms happen.
In this light I found Leading Large Scale Change: a practical guide an insightful read. This paper (with linked in videos) was produced in April 2018 for the UK National Health Service by the NHS Sustainable Improvement and Horizons Teams. It is an update of a 2011 publication and is described as a guide to leading Large Scale Change (LSC) through complex health and social care environments.
LSC is defined as change that is:
- Widely spread across geographical boundaries, multiple organisations or multiple groups.
- Deeply challenging to current models of care and ways of thinking and as such is uncomfortable for many.
- Requiring coordinated change in multiple systems.
Whatever you think about the success or otherwise of the endless changes imposed on and undertaken by the NHS, this paper – which looks at how to describe and talk about LSC; creating the conditions for LSC; and tools and approaches for implementing LSC – has some key information for Australia’s efforts in this regard.
Some of the points that interested or intrigued me:
- What can people driving LSC learn from social movements like women’s suffrage, US civil rights and environmental campaigns? It talks about three kinds of activists – lone wolves, mobilisers and organisers. They all have a role to play.
- The paper speaks strongly to creating a climate for change where everyone can contribute, and puts an emphasis on participation, co-production and diversity.
- How to manage complex dilemmas where there is no one best solution, or there are multiple “right” answers, some of which are polar opposites?
- There are sections on how to take the small steps to getting started towards LSC and how to make change spread. It discusses the “Plan, Do, Study, Act” model for improvement and how to manage the inevitable discrepancies between ideal methodologies and plans and the realities of less-than-perfect implementation.
- The paper outlines the various measures that are needed to assess implementation of LSC: measuring for accountability, for research, for performance diagnosis, and for improvement.
- Importantly, it highlights that a continuum of commitment is needed to achieve LSC.
This week’s good news story
It’s not quite a health story, but I think you will agree this is a good news story worth celebrating.
I’m a fan of the ABC TV program The Recording Studio. As far as I’m concerned, this is one of the best uses for my taxes ever, and alone provides justification for the continued funding and support of the ABC.
Recently one of the guests was the Mutitjulu Band from the Northern Territory. This is serious musical talent! They play a deadly Indigenous version of reggae.
The Mutitjulu Band came together as a result of the Grow the Music organisation, which works with First Nations musicians – a really fabulous initiative.
Croakey thanks and acknowledges Dr Lesley Russell for providing this column as a probono service to our readers. You can follow her on Twitter at @LRussellWolpe.
Previous editions of The Health Wrap can be read here.