Voluntary euthanasia was again on the agenda this week, with the Senate narrowly defeating a bill that would have allowed the ACT and Northern Territory to legislate on the issue, something that, as the ABC reported, they are currently banned from doing.
But there has been much more about end of life to consider and discuss.
Croakey contributing editor Dr Lesley Russell provides a comprehensive look at those discussions, and much more in her latest big wrap of the fortnight’s news in health.
Lesley Russell writes
Making death literacy and palliative care a part of life
Last week there was a much-needed national and international focus on dying well and palliative care.
August 8 was Dying to Know Day and there was some great information sharing and excellent discussions on mainstream and social media, and also at dinners, centred on improving death literacy. You can go back and look at the twitter conversations led by @GroundSwellAus, @KezNoo and others on @WePublicHealth for the week starting August 6 via Croakey, usingthe hashtags #DeathLiteracy & #D2KDay
It was research by the Caring at End of Life team at Western Sydney University that sparked the term ‘death literacy’ (defined as “the practical know-how needed to plan well for end of life”). Kerrie Noonan, a founding member of the research team, cofounded The GroundSwell Project in 2010 with the goal to develop greater death literacy in the community.
Dying is an integral part of life, but in Australia it is more institutionalised than in most countries. About half of all Australians die in hospital, and only 14 per cent die at home, despite 70 per cent of people saying that home is where they want to die.
Australians die at home at half the rate that people do in New Zealand, the United States, Ireland and France. In part this is due to medical and community attitudes but it is also because there is a shortage of funds and services for formal, home-based care.
As was pointed out so succinctly in a recent article in The Lancet:
“People with financial difficulties tend to have the poorest health and the biggest care needs and, unfortunately, will also be less likely to access palliative care. This issue must not be ignored, for the circle is now clearly complete: Michael Marmot’s social determinants of health reinforce Cicely Saunders’ concept of total pain and Julian Tudor Hart’s inverse care law.”
UK honours work of Dame Cicely Saunders
Palliative care workers and supporters in the UK last week tweeted out 100 key palliative care papers in honour of Dame Cicely Saunders’ birth 100 years ago (follow #cicely100).
Saunders did pioneering work in palliative care in the 1960s and 1970s. She founded the first modern hospice and really pushed to establish the discipline and the culture of palliative care. She introduced effective pain management and insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments.
You can read her obituary in the British Medical Journal here (and yes, she, died in hospice care, in the very hospice she founded).
A 2017 paper shows the success of her approach. In England and Wales, between 2004 and 2014, home and care home deaths increased (from 18 per cent to 23 per cent and from 17 per cent to 21 per cent, respectively) while hospital deaths declined (from 58 per cent to 48 per cent). But to sustain current trends, the authors calculate that end-of-life care provision in care homes and the community will need to double by 2040.
The role of primary care in the provision of palliative care
Primary health care has a major role to play in tackling health inequities. Integrating palliative care in primary health care might help reduce these inequities –something that specialist palliative care teams have been unable to achieve.
A recent blog post from Katherine Silk at the Australian Health and Hospital Association (AHHA) looks at the issues around GPs’ involvement in palliative care.
Most patients with life-limiting conditions have a regular GP with a good knowledge of their medical history and their preferences for care, as well as their physical, psychological and social capacity to deal with their illness and symptoms. Timely introduction of palliative care for these patients is important and GPs are perfectly placed to do this. However, while most GPs feel they have a role to play in caring for patients at the end-of-life, many do not feel confident in doing this.
A series of barriers to the provision of palliative care at home by GPs have been identified. These include concerns around perceived lack of knowledge, especially with complex symptom management and psychosocial issues, lack of information or poor communication between healthcare providers, and inability to provide 24-hour care.
Silk discusses the ELDAC primary care toolkit which has been created to help primary care providers and teams through the provision of palliative care and advance care planning with patients and their families. It’s great to see the ELDAC website highlighted by the Commonwealth Fund this week.
The Nepean Blue Mountains PHN ((NBMPHN) is a leader in this area. Earlier this year they released a report, Caring for People at End-of-Life, which was commissioned to understand the current use of Advance Care Planning and to help identify the future planning needs for end-of-life care services within the region.
A key finding of this report was that end-of-life care discussions are happening in a time of crisis, and that poor death literacy and lack of end-of-life planning means people are dying in hospital, emergency rooms or ambulances, despite their wish to die at home.
NBMPHN is partnering with the Groundswell Project to establish a Compassionate Community in the Blue Mountains, modelled on the work done in Frome, Somerset that I wrote about in a recent edition of The Health Wrap.
Doulas for both entering and leaving the world
“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.” From ABC Radio, Death doulas explain why everyone should have an end-of-life plan.
All four of my grandparents died at home, surrounded by family. That’s increasingly unusual now, and one of the consequences is that many of us rarely face death and dying and need resources and help to cope when we must.
Don’t forget the role of family and carers
There’s interesting research from Australia that looks at the relationships between informal caring networks (family, friends and neighbours) and formal service providers (doctors and nurses, government and not-for-profit agencies).
It finds that while formal network members believe that combinations of formal and informal caring networks are essential to support people at the end-of-life and their primary carers, they do little to establish, support or maintain the informal networks, even when there is goodwill and scope for them to do so.
The Compassionate Community approach is clearly one way to address these issues.
Palliative care funding
In May this year (just ahead of the federal budget) Stephen Duckett published an article about the Cinderella status of palliative care and the failures in policy and funding. In it he refers to both a 2014 report from the Grattan Institute, Dying Well, and his more recent paper in BMC Palliative Care on aligning policy objectives and payment design in palliative care.
Duckett makes the case that, if palliative care is to become a universally accessible service, new approaches to funding need to be adopted that take account of the unique nature of policy objectives for palliative care. He has called for an activity-based, uncapped funding model.
The Productivity Commission report Introducing Competition and Informed User Choice into Human Services, called for a substantial increase in government funding for palliative care services in both the community and aged-care facilities.
The 2017 Budget provided $8.3 million over three years to enable Primary Health Networks to recruit a facilitator to identify local palliative care services and build links with local GPs.
The 2018 Budget provided $32.8 million over the four years 2018-19 to 2021-22 to provide early access to specialist palliative care support in aged care facilities. The aim is to reduce the need for unnecessary hospitalisations at the end-of-life. Given the current concerns about the unwillingness of GPs to visit patients in residential aged care, it is far from clear how easy it will be to provide the necessary trained workforce to implement this provision.
Palliative care resources
- AIHW: Palliative care services
- Compassionate Communities Hub research papers (Australia) https://www.comcomhub.com/research/
- CareSearch palliative care knowledge network (Australia) https://www.caresearch.com.au/Caresearch/Default.aspx
- Death over Dinner http://deathoverdinner.org.au/#about
- Lobster for Josina – Fabulous food for our final days
Homelessness is a women’s issue
This past week, 6-12 August, was Homelessness Week.
More than 100,000 Australians (42 per cent of them women) are classified as homeless on any given night. It might surprise you to know that the person most likely to walk into a homelessness service is a woman aged 24-34, most likely with one or more children. Homelessness Australia has the shocking statistics here.
Several recent articles have focused on the gendered aspects of homelessness we don’t often hear about – such as the vulnerability to violence that homeless women (many of whom have fled domestic violence) are exposed to.
In an article for The Conversation based on her recent book, Juliet Watson looks at how the poverty, social exclusion and physical danger that accompany homelessness requires them to manage their circumstances with very few resources. For some, this means exchanging sex for somewhere to stay. Watson highlights the common assumption by many (specifically those who would exploit them) that homelessness made women willing and available to transact sex for accommodation.
The fastest growing demographic of people experiencing homelessness is single women aged over the age of 55. There’s a large cohort of older women who don’t have significant superannuation, may not yet have access to the Aged Pension, and don’t have housing security who are perilously close to being homeless. Experts say there is a “tsunami” of middle-aged women facing housing stress and homelessness that Australia’s governments “should have seen coming”.
Some 34 per cent of single women over 60 lived in permanent income poverty, compared to 27 per cent of single older men and 24 per cent of couples. Research shows that a “complex mix of circumstances” act to discriminate against women, including the casualisation of the workforce, the superannuation system, and family violence. By age 65, women retire with about a third of the superannuation that men accrue, and government benefits account for 60 per cent of their income
Where are the actions to address these issues? Where are the voices to make the case for eliminating homelessness? Ironically, Homelessness Australia which coordinates Homelessness Week, was defunded by the Commonwealth Government in 2015 and now operates on community donations.
The dental divide – and the decay of public dental services
It was refreshing that the recent Grattan Institute report Mapping primary care in Australia saw oral health and access to dental care as an integral part of primary care.
As the report makes clear, individuals or their private health insurer pay for the bulk of dental care. In 2015-16, total dental costs were $9.9 billion, of which individuals paid $5.7 billion (58 percent) and PHI paid $1.8 billion (18 percent).
Dental care is a major contributor to growing out-of-pocket costs. As a result, about one in five Australians do not get the recommended level of oral health care. Worse, people on low incomes who can’t afford to pay often wait for years to get access to public dental services.
The Commonwealth and the states jointly fund public dental services for people on low incomes (through a National Partnership Agreement with the States and Territories) and for children (through the Child Dental Benefits Schedule). About 36 per cent of the population is eligible for public dental services, but there is capacity to provide services to only about one-fifth of this group.
No wonder there are long waits for public dental services. In 2015-16 the ‘best’ average waiting time was 87 days in Western Australia, and the worst was 916 days in Tasmania. See A discussion of public dental waiting times information in Australia 2013-14 to 2016-17 from the Australian Institute of Health and Welfare, January 2018.
The situation is predicted to get much worse: Victoria calculates that it will need to double the number of patients that the public system sees from 400,000 to at least 800,000 over the next five years.
The Abbott/Turnbull has shown little interest in improving public dental services (did you hear anything from them in support of National Dental Week last week?) and private health insurance, even for those able to afford it, provides only limited, capped assistance with dental costs.
You might be interested to read what the Australian Dental Association has to say about the value of private health insurance. They accuse private health insurers of “ripping off patients” and have renewed calls for the federal government to give consumers another option.
Both the government and private health insurers might be more generous with their dental benefits if they saw the savings in medical costs and reduced emergency department visits and hospitalisations that result when people with certain conditions, such as heart disease, stroke, or pregnancy, have their gum disease treated.
The Australia’s Adult Oral Health Tracker issued in March 2018 by the Australian Dental Association and the Australian Health Policy Collaboration shows how poor Australian oral health outcomes are. Only half of all Australians brush their teeth twice a day, 90 per cent of adults have some form of tooth decay, one-third of 5-year olds have decay in their baby teeth, and one quarter of teens had not had a dental check-up in the past year. See this ABC News report.
There’s much that can be done (that must be done) to address this. I think that a Medicare-style program is a step too far and too expensive, and have pragmatically offered a set of smaller options that could be implemented to put the mouth back into healthcare and close the dental/medical divide.
Mental health and exercise
A recent large scale, long term study published in The Lancet Psychiatry looked at the association between physical exercise and mental health.
This study is important because although exercise is known to be associated with reduced risk of all-cause mortality, cardiovascular disease, stroke, and diabetes, its association with mental health remains unclear.
I’ve touched on this topic before when I wrote about the benefits of “forest bathing” and spending time outdoors in green spaces.
The findings did clarify the issues – but also left a lot of questions to be answered. Physical exercise was found to be significantly and meaningfully associated with an improved self-reported mental health burden, but more exercise was not always better and the type of exercise may be important.
Here’s a summary:
- People who exercised reported about 40 per cent better mental health than people who didn’t exercise, even after controlling for factors like physical health, obesity and socio-economic status. This is a large difference.
- People who exercised for about 45 minutes a day reported better mental health than people who exercised for less than 30 minutes or more than 60 minutes.
- People who exercise three to five times a week reported better mental health than those who exercised less or more.
- People doing team sports or cycling reported much better mental health than those doing other sports and activities. But even just walking or doing household chores is better than doing nothing.
The authors suggest that personally tailored recommendations for specific types, durations, and frequencies of exercise might be the most effective way to reduce the mental health burden.
They also point out that there are strong indications the relationship between exercise and mental health goes both ways – for example inactivity could be a symptom of and contributor to poor mental health and being active could be a sign of or contribute to resilience. The authors note that their study cannot confirm cause and effect.
In case you missed it: an important series on drug reforms
Last week John Menadue’s blog Pearls and Irritations ran an extended series of articles on needed illicit drug reforms. These are well worth a read (even if you find yourself in disagreement with the writers), if only to highlight lost opportunities and the pressing need for political leadership in this area.
My colleague Jennifer Doggett did a nice summary of these articles for Croakey, which you can read here.
- Marion McConnell: The long road to drug law reform
- Geoff Gallop: The politics of drug decriminalisation
- Alex Wodak: Drug policy: prohibition and punishment is just not effective
- Bill Bush: High drug incarceration – harms manifest and benefits hard to perceive
- Mick Palmer: The blind eye of history: from policing alcohol prohibition to policing drug prohibition
- Ian Webster: Drug policy and justice
- Michael Hart: Drug policy – and addiction to failure
- Ralph Seccombe: Production of illicit drugs – the balloon effect
- Helen Tyrrell: Grasping the nettle: prisons, drug use and the law
- Keith Hamburger: Punishment alone is not the answer
- Gino Vumbaca: At last, a government sanctioned pill testing program
- Tony Trimingham: Don’t punish drug users. Help them instead
- Peter Baume: Drug policy – none so blind
- Chris Puplick: The evidence for drug policy reform is clear
- Alex Wodak: Portugal’s successful drug law reform in 2001
ICYMI: Reading and resources recommended by the Croakey team
AIHW: Patients’ out-of-pocket spending on Medicare services, 2016–17: https://www.aihw.gov.au/reports/primary-health-care/mhc-patient-out-pocket-spending-medicare-2016-17/contents/summary