Rahzeb Choudhury, Founder, Lifelong Inspiration – simple solutions for complex problems, Amsterdam Area, Netherlands
It stands to reason that when you rate a care or nursing home as outstanding, good or bad, you need to be using the right measures for the rating to be meaningful.
From working with organisations throughout the world, we’ve noticed that there is a great deal of variety in what is deemed to be important. This ranges from organisations that emphasise the clinical and medical right through to organisations that stress using person directed care approaches with wider goals around residents’ quality of life, preference, choice and autonomy.
There is growing recognition that person centred care is the gold standard when it comes to service quality at care or nursing homes.
In most cases, elders living in nursing and sometimes in care homes, are living with dementia. The simple and important idea behind person centred dementia care is an understanding that while cognitive decline is inevitable, emotional and spiritual lives can remain rich and fulfilling right to the end of life.
As you might imagine, when quality of life is the central focus, the culture is such that staff function at a higher level, morale is higher, work is more fulfilling and the sense of creating a true last home for elders is greater.
But, there isn’t a single definition of person centred care. So person centred in one country, locality or organisation is quite different to that in another country, locality or organisation.
Looking at nationally defined quality measures in Australia, Canada, France, Germany, The Netherlands, United Kingdom and the US, you see this variance playing out.
Take the example of the US, where since November 2017 publicly funded Medicaid and Medicare facilities are to provide/strive towards person centred care. Centers for Medicare & Medicaid Services (CMS) define person centred care as “to focus on the resident as the locus of control and support the resident in making their own choices and having control over their daily lives”.
Yet the fifteen plus quality criteria used emphasise clinical and medical performance. This means that a care or nursing home with a five star rating in the US doesn’t have to be particularly person centred in its care approach. To be fair, this is made clear by the CMS, who advise that the five star rating system includes aggregate and individual scores on three areas – independent inspections, staffing and quality measures covering physical and clinical needs. The question that arises: how is service quality in terms of person centred care being measured?
There is a similar clinical focus in Canada. The Continuing Care Reporting System at Canadian Institute for Health Information uses eight indicators derived from something called the Resident Assessment Instrument-Minimum Dataset (RAI-MDS). The three measures cover:
- Physical function, encompassing transfers, walking and wheeling.
- Quality of life, covering incontinence, depression, behaviour symptoms and pain.
- Safety, which includes falls, antipsychotic medication and pressure ulcers.
Contrast this with the UK, where, looking at the Quality Care Commission’s inspection reports for nursing/care homes, you immediately notice a very different set of metrics. The five measures they use are:
- Are the residents protected from abuse and avoidable harm?
- Residents receive care that achieves good outcomes, helps maintain quality of life and is based on the best available evidence.
- Staff involve residents and treat them with compassion, kindness, dignity and respect.
- Services are organised so that they meet the needs of residents.
- Well-led. The leadership, management and governance of the organisation make sure it’s providing high quality care that’s based around your individual needs, that it encourages learning and innovation, and promotes an open and fair culture.
In our view, these criteria translate more intuitively into an understanding of how a home is performing when it comes to ensuring a good quality of life for residents.
There are no set of quality criteria at European Union level. And in fact there are major disparities in approaches. We look at three examples below.
The Netherlands is often held up as one of the countries at the forefront of long term care provision. The Dutch quality register for nursing homes outlines four quality criteria:
- Person centred care. The four themes are compassion, resident uniqueness, autonomy, and care goals.
- Living and wellbeing. The five themes are ensuring purpose, meaningful days, clean and cared for body and clothes, involvement of family and volunteer commitment, and living comfort.
- The four themes are medication safety, pressure ulcer prevention, motivated use of freedom-restricting measures, and prevention of acute hospitalisation.
- Learning and improving quality with quality plans, annual quality reports, a learning network, 5-year reviews and a quality management system.
Similar to the UK, you’ll notice the social care focus, and raising the bar, an explicit mention of person centred care. These new criteria have been in operation since 2017.
Making it contractual
In France there is a reliance on the contracts between local and regional authorities and care providers to define the required quality. It is assumed that these contracts (contrat pluriannuel d’objectifs et de moyens) cover quality assurance adequately.
Less emphasis is given to oversight through inspections. Since 2015 nursing homes are required to maintain a dashboard to demonstrate control. The dashboard includes 337 indicators. The system is recognised as overly complex and does not systematically place a focus on person centred approaches.
Balancing contracts, self-reporting and inspections
Since 1994 Germany has operated a system of compulsory long term care insurance alongside regular health insurance. For many years there was a reliance quality contracts, similar to France now, in that (self)reporting used to focus on healthcare management, as a posed to social care. In 2009 the Care Transparency Agreement came into affect, introducing publicly available online scorecards with 64 indicators.
To supplement self-reporting, annual inspections began in 2011. Independent research has shown that quality improved for the indicators measured. The vast majority of which still related to healthcare management, rather than service, with little by way of information on quality of life indicators.
The latest version of the measurement system came into affect in October 2019, shifting the focus away from structural/management criteria towards the care outcomes. Self-reporting criteria are now:
- Maintenance and promotion of independence. The three topics measured are preserved mobility, preserved independence in every-day routine activities, and preserved independence in the design of every-day life.
- Protection against health damage and stress. The three topics measured are emergence of pressure ulcers, severe consequences of falls, and unplanned weight loss.
- Support of specific needs. The four topics measured are execution of an intake, use of safety belts, use of bedside panels, and timeliness of pain assessment.
The external inspections now also look more to resident experience than previously.
It’s a continuous process
All Australian government subsidised providers must meet the Aged Care Quality Standards. The latest version from July 2019 covers eight areas: Consumer dignity and choice, Ongoing assessment and planning with consumers, Personal care and clinical care, Services and supports for daily living, Organisation’s service environment, Feedback and Complaints, Human resources, and finally Organisational governance.
The Australian quality indication system for the public , which is still in an early stage of development, has three measures: Pressure Injuries, Use of Physical Restraint and Unplanned Weight Loss. These aim “to help services to understand and improve the care and services they provide” (direct quote, May 2020). The link between the person centred aspects of the standards and the quality indicators are not yet obvious.
Not invented here
Undoubtedly, people will argue that caveats apply. Quality requirements are often be defined by regional legislation, the culture of individual organisations, and whether a home follows a particular model of care. Yet, it seems strange that in 2020 there are such glaring differences between rich countries.
The information needed to compare systems is not hard to come by. All the research needed to draft this article is based on publicly available information. And surely an essential service should not be a postcode lottery, where by definition the good fortune of living in one area affords you a better quality of care than in a neighbouring area.
If we already know that person centred care is the benchmark to aim for, why would quality in any organisation or model of care seek anything else? Why set the bar for national quality criteria so low or with a lack of focus such that professionals in an essential sector cannot objectively argue for the required investment? Why aren’t healthcare legislators looking at and learning more from each other?
Glaring gaps and hopes for the future
While long term care organisations throughout the world are dealing with added pressure of Covid-19, so many wonderful people that we have worked with over the years are faced with making tremendously difficult decisions in how to deliver care. Despite best efforts, we notice unequal capabilities in dealing with the situation, staff engagement and resilience at some organisations at a very different level than at others, and the same for the ability to engage family and community.
Providing quality long term care is much more than the clinical, such as having protective equipment (PPE), important as that is also. None of what constitutes person centred care is rocket science, in fact far from it. It’s mostly about creating the right culture and resourcing in such a way that people in care organisations can treat elders as they would want to be treated. About creating a familial environment, rich with fulfilling experiences.
As a breath of fresh air, just before publishing this article, we received a guideline, put together by a ‘Pop-up Coalition’ of sixty-industry organisations from around the world, on preserving family presence during these challenging times.
Perhaps there can be few positives are to come out of Covid-19 and the increased societal focus on long term care. We would love for there to be more sharing and learning between industry organisations, coupled with a push toward better, more transparent quality criteria so that there can no longer be justification for under funding the sector and under investing in staff.
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