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Change is a coming – to palliative care

Change is a coming - to palliative care - Photo by Tim Doerfler - Unsplash
Photo by Tim Doerfler – Unsplash

Here’s Good Grief’s bullet point review of Volume 1 Summary and Recommendations, of Australia’s Royal Commission into Aged Care Quality and Safety.

It’s a report we want to help you keep an eye on.

The Commission’s report, delivered last February, is a fantastic opportunity for everyone – including lay people, to do a reset.

From now on facilities themselves, governments, and other stakeholders, will work to implement the Royal Commission’s recommendations. There’ll be a temptation to shy away from some, because they’re too hard or too expensive. So those will need attention.

But as Good Grief! visits and talks with nursing home staff, which we’ve been doing a bit of lately – we see the full range of places: those with large investors behind them and the much smaller operators. We are struck by the warmth, common sense and commitment to the care of their residents, no matter what the size, of most of the places we visit.

We want to support you as our culture makes changes and improves the way death is approached in old age.

We know you’re busy, so we’ll step off today with a speed read, condensing down to a manageable read, the Commission’s discussion of palliative care in its Final Report: Care, Dignity and Respect, Volume 1 Summary and Recommendations.

Early in this document the commission states there is a common purpose to the new aged care we need:

“to ensure that older people have an entitlement to high quality aged care and support and that they must receive it. Such care and support must be safe and timely and must assist older people to live an active, self-determined and meaningful life in a safe and caring environment that allows for dignified living in old age.

But it then points out: “we do not have an ideal market economy for the provision of aged care in Australia.”

So the way the market in aged care is conducted has to improve. Problems aren’t going to be solved just by good people working in the sector trying to do better. It’s about appropriate financing, both by investors and governments.

The commission identifies five problems, really the status quo which Australians currently accept, which have implications for many aspects of aged care, including palliative care:

For the elderly living in the community:

  1. Too many older people are not getting the Home Care Package they need at the time and level they need it. The capping of the number of packages means that many people cannot access a package even when they are approved for one.

(The Conversation defines a home care package as “a fixed amount of money allocated by the federal government to an older person to provide services which will enable them to continue to live independently. The amount of money provided depends on the person’s needs, as assessed by an independent assessment agency.”)

  • The amount funded for Home Care Packages is insufficient to meet the care
    needs of many.

For those in residential aged care:

  • Staffing levels are too low.
  • The current system is largely failing those Australians who are identified by the current legislation itself as having ‘special needs’. (And) people living in regional, rural and remote areas.
  • The aged care system is not well integrated with the health care system.

Those broad-based problems need fixing. We see investment in these as the platform on which better delivery of palliative care can be built.

The Commission goes on to say:

“People receiving aged care should have the same access to health services, such as medical services, hospital services, specialist palliative care services and subacute rehabilitation services, as other people in Australia. This does not seem to be the case.”

“Too few people receive evidence-based end-of-life and palliative care, and instead experience unnecessary pain or indignity in their final days. Older people with mental health issues are often heavily medicated, but do not receive access to preventative care and other treatments.”

In response to these particular problems, the Commission says the new Aged Care Quality Standards Commission (which began in January 2020) “should be tasked with the immediate review of the Aged Care Quality Standards to raise the bar.”

“We further recommend that the Australian and State and Territory Governments establish a new National Cabinet Reform Committee on Ageing and Older Australians. This Committee will have a key role in the implementation of those critical elements of our reforms that will require the cooperation of the States and Territories.

“While aged care is an Australian Government responsibility, essential elements of the care for older Australians, such as housing, allied health and hospital care and palliative care, are delivered by State and Territory Governments.

All levels of government need to be involved.

“All levels of government need to be working together if we are to rise to this national challenge.”

Palliative care is among those practices it recommends need major improvement:

The Commission says more needs to be spent on quality, not just workforce.

“Most of the money spent in aged care is spent on the workforce. More needs to be spent to deliver better quality and safe aged care.

“We found to our surprise that most health and aged care education pays insufficient attention to age-related conditions and the complexities of associated health and personal care requirements. This is despite the fact that a high proportion of older people receive both health and aged care services.

“We make recommendations to improve education courses and training arrangements, including through mandatory units in areas such as dementia and palliative care.”

Having acknowledged the divide between aged care and health services, the Commission acknowledges work of area state health networks that could be further utilised by the aged care sector.

“Proactive local health networks in the States and Territories have developed multidisciplinary hospital outreach teams of medical specialists and other health practitioners who visit residential care services to deliver more complex health care, including palliative care.

“They are successful, but there are nowhere near enough of them.

“We recommend that the National Health Care Reform Agreement be amended so that all people receiving residential care or personal care at home have access to these invaluable services, and that the range of specialist services is extended to enable the full range of conditions to be covered.”

The Commission noted that palliative care was among one of the common areas of substandard complex care. The others related to dementia and mental health.

“Residential aged care is often a person’s final place of residence before they die. Palliative and end-of-life care, like dementia care, should be considered core business for aged care providers.”

Change is a coming - to palliative care. Photo by Bret Kavanaugh - Unsplash
Photo by Bret Kavanaugh – Unsplash

The Commission cited palliative care as one of four areas that needs immediate attention. (The others were food and nutrition, dementia care, the use of restrictive practices.)

It notes: “Dementia care extends across a continuum from diagnosis through to palliative care, and includes prevention, primary care and hospital care.”

“High quality palliative care is essential to ensuring that an older person can live their life as fully and as comfortably as possible as they approach death.”

“A number of our recommendations will contribute to ensuring high quality palliative care becomes core business for aged care services. These include a right to fair, equitable and non-discriminatory access to palliative and end-of-life care, improved access to specialist palliative care services and requirements for regular staff training.

“Urgent consideration should also be given to how palliative care is reflected in the Aged Care Quality Standards.”

“We recommend that the Australian Commission on Safety and Quality in Health Care should be renamed the ‘Australian Commission on Safety and Quality in Health and Aged Care’, and its role expanded to include formulating standards, guidelines and indicators relating to aged care safety and quality.

“The Commission should undertake periodic reviews of the Aged Care Quality Standards.

“It should also urgently review and, if it considers appropriate, amend the Standards in the areas of nutrition, dementia care, palliative care and other clinical care priorities, and provider governance. Further, the Commission should progressively review standards for staffing, diversity, aged care plans, quality of life and wellbeing.”

The Commission talks about developing a category of care at home, that can be monitored by such bodies.

“The care at home category should support older people living at home.”

This should provide personalised budgets which allow for a coordinated and integrated range of care and supports for individuals.

“These could include palliative and end-of-life care… There should be a lead provider, chosen by the older person, who would be responsible for ensuring that services are delivered and for adjusting the care to meet the older person’s changing needs.”

Earlier in this volume of the report, the commissioners talked of a system governor “to provide leadership and oversight and shape the system.” 

“We recommend that the System Governor should implement a residential care category that provides high quality and safe care based on assessed needs.”

“It should allow for personalised care and an integrated range of supports across these domains: care management; social supports; personal, clinical, enabling and therapeutic care and support; and palliative and end-of-life care.”

“We recommend that the Australian and State and Territory Governments should introduce multidisciplinary outreach services accessible to all people receiving residential care or personal care at home, based on clinical need.”

This includes for palliative care specialists.

“The fragmentation and passing of responsibilities between the aged care and health care systems should be dealt with by the Australian and State and Territory Governments by amending the National Health Reform Agreement to include an explicit statement of the respective roles and responsibilities of aged care providers and State and Territory health care providers to deliver health care to people receiving aged care.

“The Agreement should also make it clear that State and Territory health services, such as hospital services, specialist palliative care services and subacute rehabilitation services, are to be available to people receiving aged care on the same basis as they are available to other people.”

The Commission recommends the Certificate III should be reviewed and that – among others – palliative care should be included as core competencies.

It noted that residential aged care staff tend to be under-skilled and under-educated in palliative care, and there is a lack of suitably qualified staff to manage palliative care adequately.

“The Australian Government should implement as a condition of approval of aged care providers that all workers who are involved in direct contact with people seeking or receiving services in the aged care system undertake regular training about dementia care and palliative care.”

It says, in relation to the care at home service category, the Australian Department of Health is currently developing a model for assessment. Palliative care should be included in this.

It says there should be an immediate funding increase for education and training.

“We recommend that the Australian Government should urgently establish a scheme to improve the quality of the current aged care workforce. The scheme should reimburse providers of home support, home care and residential aged care for the cost of education and training of the direct care workforce employed.”

The recommendations that specifically relate to palliative care include:

  • Recommendation 2- People receiving end-of-life care: the right to fair, equitable and non-discriminatory access to palliative and end-of-life care
  • Recommendation 19 – Urgent review of the Aged Care Quality Standards:high quality palliative care in residential aged care, including staff capacity (number, skill and type), processes and clinical governance, for recognising deterioration and dying.
  • Recommendation 35 – Care at home category: The System Governor should be in a position to commence payment of subsidies for service provision within a new care at home category by 1 July 2024. Palliative and end-of-life care to be included in this.
  • Recommendation 37 – Residential care category: From 1 July 2024, the System Governor should implement a category within the new aged care program for residential care that provides integrated and high quality and safe care based on assessed needs, which allows for personalised care, regular engagement, and a coordinated and integrated range of supports, including in palliative and end-of-life care.
  • Recommendation 58 – Access to specialists and other health practitioners through Multidisciplinary Outreach Services: to be implemented by 1January 2022 and to include access to a core group of relevant specialists, including palliative care specialists.
  • Recommendation 70 – Improved access to State and Territory health services by people receiving aged care: to provide access by people receiving aged care to State and Territory Government funded health services, including palliative care services, on the basis of the same eligibility criteria that apply to residents of the relevant State and Territory more generally.
  • Recommendation 80 – Dementia and palliative care training for workers: By 1 July 2022, the Australian Government should implement as a condition of approval of aged care providers, that all workers engaged by providers who are involved in direct contact with people seeking or receiving services in the aged care system undertake regular training about dementia care and palliative care.
  • Recommendation 81 – Ongoing professional development of the aged care workforce: From 1 July 2021, the Australian Government and the States and Territories, through the Skills National Cabinet Reform Committee, should fast-track the development by the Australian Industry and Skills Committee of accredited, nationally recognised the aged care workforce. The courses should be designed to improve opportunities for learning and professional development.

Further reading:

About the Royal Commission, go to:

Royal Commission into Aged Care Quality and Safety

To download the Final Report: Care, Dignity and Respect, Volume 1 Summary and Recommendations go to:

https://agedcare.royalcommission.gov.au/publications/final-report

More about the The Aged Care Quality and Safety Commissioner can be found at:https://www.agedcarequality.gov.au/about-us

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