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The unfairest deal

Why do we drive 35% more than the EU average of our fast increasing elderly into soul-destroying and expensive institutions?

In June 2016, a major report substantiated rumours of multiple serious flaws in elderly care services. The norm, it says, is disorganisation and inconsistency. Social workers state that as many as half of their clients processed for long-term institutional care would not have needed it if suitable home supports had been available.

Although the number of people aged over 85, and those with dementia, has increased, Health Service Executive (HSE) funding of home support services is lower than it was in 2008, though, as Village went to press, more money was being found to address acute hospital pressure, including through homecare support for the elderly.

It is now common practice to place elderly people in acute hospitals and nursing homes rather than in community care though virtually nobody wants this highly emotional uprooting.

Tellingly, service-users availing of the Nursing Home Support Scheme, also ironically known as the Fair Deal Scheme, tend not to be consulted about plans affecting them. The social workers’ report (produced jointly by the Irish Association of Social Workers, Age Action, The Alzheimer Society and UCD’s School of Social Work, titled ‘I’d prefer to stay at home but I don’t have a choice’ Meeting Older People’s Preference for Care: Policy, but what about practice?, [the ‘I’d prefer’ report] estimated that about one in six have zero say in their care; often ‘tokenistic’ anyway when taken into account. Defensive considerations of safety are to the fore, drowning out the older person’s wishes and rights to accept the risk of living more independently. In such cases, social workers often feel forced to stand up for their rights.

Before 2009, eligibility for nursing-home care officially cost the elderly nothing, beyond discretionary state-pension deductions. In 2016, by contrast, the statutory regime extracts 80 per cent of income, 20 per cent of house value and 7.5 per cent annually of the inmate’s assets on admission to either public or private nursing homes. This surrender of personal estate may be exchanged for characterless accommodation and scant attention, not conducive to wellbeing. Budget-hostel conditions for five-star hotel fees.

The Fair Deal Scheme covers approved private, voluntary, and public nursing homes. An applicant medically assessed as requiring longterm care and having disclosed all assets, pays some or all of the fees while the State funds the balance due.

Private nursing homes are not necessarily superior − clinical environments, wheelchairs everywhere, warning signs on fire-doors, uniformed staff in file-laden offices, and ranks of elderly people sprawled in chintzy 1970s chairs.

Small single or double rooms are characterless and utilitarian, with white walls, a floor-shower with plastic white chair, white locker, and an open wardrobe space.

However, it is a bureaucratic contrivance to regard a bed and locker-wardrobe hemmed around by a thin curtain, as suitable long-term for a home. This arrangement is still found in a dozen public residences. Company is essential, but not when so imposed. Only the food trolley and drug round are sacred. Interruptions such as repeat alarms, vacuum cleaners, loud radios and moans burden frail mentalities: no quiet room or safe garden to retreat to.

Visitor and doctor business is typically done at bedsides. Greasy hair, encrusted skin, and plaque-caked teeth tell tales. Everyone here is naked to the world, always on show, denied the security and privacy you and I insist on. Yesterday’s heroes and heroines consigned to anonymous decay, deprived of a little corner to wind down in peace.

Environment matters. Home is a place to feel safe, respected, content and heard. Psychology studies by Langer, Harris et al have clearly established how crucial qualitative, as opposed to quantitative, numbers-based components are to a sense of home. Mobile people in the community can avail of a change of scene, or spend time in nature. Not so for those confined. The building, and the grounds, if there are any, are their whole world.

The trade-off between access to these services and surrender of individuality is egregious. According to the the ‘I’d prefer’ report, sheltered housing, home adaptations, and flexible home-care packages, day and night, would help people to manage. Their scarcity prolongs hospital stays and fuels unsound detention.

Nellie Bly published her harsh experience of institutionalisation in the late 1800s. Foucault, Goffman and other experts have convincingly decried its eroding effects, yet prolonged incarceration is still readily authorised across populations.

Since July 1st 2015, the licensing body for all public and private nursing-homes has begun to refuse registration. As the Health Information and Quality Authority (HIQA), the independent health watch-dog set up in 2007, insists on the implementation of higher standards, up to forty facilities under inspection face the prospect of full or partial closure for not upgrading accommodation, and may be told not to admit new residents until improvements are made.

Since standards were defined in 2009, centres which produced a schedule of planned works, even without commitment, had been treated leniently. But without follow-through, tougher measures of closure pending overhaul may be the answer.

HIQA’s latest report, published in April 2016, acknowledges compliance in most centres, but notes that much remains to be done in the areas of governance, risk management, fire precautions, staffing levels, and above all, premises quality. The HSE’s website conveys assurances that a full range of residential and community care for older people is readily available for all, without mentioning gaps and challenges.

The last major Departmental report on the elderly, ‘The Years Ahead’, published in 1988, is now 28 years old. Another beautiful noble document, rarely read anymore, it made recommendations about the proper organisation of community care for the elderly.

The 1994 general strategy, ‘Shaping a Healthier Future’, set the ambitious target that no less than 90 per cent of over 75’s would live at home. With few new nursing home beds coming on stream, many have no choice. If home support packages aren’t forthcoming, sick older people may wait in acute hospital beds, leading to consequent bottlenecks in A & E wards and elsewhere.

Low dependent ‘social cases’ end up living in expensive nursing residences. The ‘I’d prefer’ report confirms that absence of community care means growing waiting lists for home care packages, and unnecessary occupation of hospitals and nursing homes by those refused. The deficit-based approach, withholding assistance if primary caregivers are family members, drives many to breaking point, as does trying to navigate the opaque interface of the system.

In 2013, a National Positive Ageing Strategy drew much on WHO and UN thinking and aimed to fulfill a 2007 Governmental commitment to ‘better recognise the position of older people in Irish society’. It identified four goals: participation, security, ongoing research, such as Trinity College’s Irish Longitudinal Study on Ageing (TILDA), to feed into appropriate policy, and under health, the usual references to living at home independently and with dignity for as long as possible. It focused primarily on the active aged. There was also the sensiblesounding 2008, ‘Strategy To Prevent Falls and Fractures’.

A 2014 survey by BDO auditors indicated that almost 8,000 new nursing home beds (the equivalent of about 100 new nursing homes) must be established to meet predicted demand by 2021. Fair Deal users currently occupy nearly 90 per cent of nursing home beds, at an annual Exchequer cost of nearly one billion euro. Portions of this figure, puzzlingly huge given mandated cost recovery, may be redistributed to pay for separate though related services, such as community supports. The wisdom of such transfers, not only from an accounting perspective, is questionable, especially given ever-increasing demand for beds.

DKM Economic Consultants reiterated the supply gap and the need to cater for expanding demand, in their report published at the end of 2015, commissioned by the Department of Health, and carried out in cooperation with AECOM, RDJ Solicitors and Rose McHugh. Significant variations in prices of care make no sense. Since the most prohibitive factor identified is the current price-setting procedures of the Fair Deal Scheme, restructuring of this model was recommended. Also, detached rural homes should be maintained and funded.

Entitled, ‘Potential Measures to Encourage The Provision Of Nursing Home and Community Nursing Unit Facilities In Ireland’, DKM’s analysis somewhat foreseeably recommended private investment and a public private partnership approach to make over public sites. However, PSI (Public Services International) and other monitors have been pointing out for half a century that relying on the profit-motivated sector to sustain social services soon becomes expensive, exclusionary and inefficient, in comparison with steady state funding and a long-term commitment to prioritise quality and value for people in need, without bias. Echoing the status quo, community and home care options were neglected in an evaluation that appears mainly directed at the nursing home industry.

HIQA’s continual brief is to ensure that minimum standards are met, and that existing substandard accommodation is phased out, regardless of the associated cost of €500 million, calculated in 2015. The eleven public nursing homes have been singled out, notwithstanding their reputation for superlative care. A Review of the Nursing Home Subvention Scheme, which preceded the Fair Deal Scheme, was commissioned from NUIG professor, Eamon O’ Shea, in 2002, and illustrated the merits and drawbacks of both the public and private residential care sectors, and their different concerns about values, such as the profit motive versus vocation. With HIQA now responsible for setting standards and carrying out inspections across the board, in state-run, voluntary and private homes, and the Fair Deal Scheme applying in each, imputed opposing motives become less relevant.

Article 45 of the somewhat antiquated Irish Constitution calls for a just formation of the social order. Section 4 mentions, amongst others, the elderly:

41° The State pledges itself to safeguard with especial care the economic interests of the weaker sections of the community, and, where necessary, to contribute to the support of the infirm, the widow, the orphan, and the aged.

That a population will grow older and need extra assistance is self-evident, so planning accordingly to ensure rights are protected has obvious merit.

The 2015 Report of the Working Group on Congregated Settings, focusing on the 3,500 people with intellectual disabilities (as opposed to the elderly) in seventy-two institutions, identified similar issues to those in nursing homes. Normalised invasion of privacy, changing of incontinent residents in communal areas, monotony, and superficial interaction with staff, visitors, and co-residents, were amongst depredations recorded. Tasks and order predominate. Employees complained of an inability to act in a dignified and empathetic way towards clients contained in regimental systems that contravene national policy and UN conventions.

One nurse interviewed, based in the same nursing home for thirty years while rearing her own family, said that staff shortages hugely impact care quality. For example, aided by just one carer, she has to wake, wash, dress and feed thirty-two elderly residents every morning, allowing for minimal one-to-one interaction. The instructions are to get them all up before the other staff come on duty at 8am. Tired people forced from their rest only to face sorrow and boredom. The ubiquitous complaint of staff-members is that paper work has overtaken patient care as the most important duty.

Some suspect that business calculations precede needs assessment in admission decisions, and, in line with observations recently made by social workers, residents are sometimes ‘cherry-picked’, so that more heavily dependent applicants, some with advanced dementia symptoms, are turned away.

As to HIQA visits, the same nurse explained that as most are announced, improvements are made beforehand. Inspectors seemed sometimes to hold inconsistent standards about reasonable conditions, but as they are present only for a few hours, they cannot get a complete picture of what happens throughout the day and night.

Patients regularly visited by relatives or others who will speak up for them, do get a better standard of care. Given the life or death consequences, the rest could benefit from some alternative advocacy. Having discovered too many incidents of rudeness, roughness and other unacceptable behaviours down through the years, people like this nurse would favourably view any introduction of a disciplinary process with the powers to re-assign or dismiss offenders, for every nursing home. What relatives really want for their loved ones is to be cherished in a setting that makes them feel comfortable and at home, protected but with their civil rights and freedoms genuinely honoured.

A 2002 Working Group on Elder Abuse defined elder mistreatment as, “a single or repeated act or lack of appropriate action occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person or violates their human and civil rights”. Abuse can be physical, sexual, psychological, financial, discriminatory or simply derive from neglect. Over-exposure to group settings makes discriminatory and neglectful behaviour highly probable; indeed, almost inevitable.

Better
Better

New faces appear daily to carry out intimate chores. Key-worker inconsistency driven by high staff turnover exacerbates anxiety and confusion, causing discontinuity. Staff are often drawn to residents who can still converse lucidly. The worse the condition, the less attention is paid. The most popular and humane carers are always run off their feet, in a job that can be demanding, physically and emotionally: Trojan souls whose civil and conscientious mindsets, even in the face of difficult behaviour, are unsurpassed. They deserve to know that society applauds their compassionate work. On the other hand, a good career can never justify dereliction of duty and of common courtesy to feeble charges.

Socialisation, or contact with chosen others, has been extensively studied and found to be pivotal for mental health. It promotes integrity and a sense of self. The expansion of Geropsychology, which focuses on the psychology of ageing and develops appropriate clinical services, is timely. Addressing late-life problems linked to retirement, grieving, declining health, and so on, which tend to be overlooked, can result in reduced anxiety, readier access to services, greater activity, restored positive routines and other benefits that matter greatly for individual thriving and improved relationships. This reality-based approach treats the elderly as adults rather than babying them into submission.

Instead, stringent mental exams are conducted on heavily-medicated minds lacking connection with the outside world, short of resources to prepare and check for such tests, and often confused by inaccurate calendars and clocks. Syringes deliver lethargy and adverse reactions, and are wielded when an extra pillow would do. It’s one strike and you’re out, where setbacks are concerned. Miss one attendance and you’ll be relegated for good. The attitude that care is being delivered under sufferance, out of pure charity, can still be witnessed, despite the fact that clients’ fees contribute to staff salaries.

One daughter was appalled when her elderly mother, in A & E after a fall, not only got nothing to eat during her day-long wait for examination, but was told to urinate in a nappy there and then affixed. Another woman whose 88 year-old father became ill, lamented that the medical establishment still addresses the age rather than the person.

She was told several times that his condition, though treatable, would not be tended as ill health was only to be expected at his age. After he disintegrated during a hospital experience which rendered him confused and incontinent, she ended up begging for extra pads for him. Even though she offered to pay for more, she was refused: the daily quota of three, regardless of accidents, had already been used. This allowance was recently raised to four a day.

Another distressing moment was trying to deal with the dehydration her father had developed when he came home after a week in respite. Too unsteady to drink from cups handed out, he could not consume sufficient liquid. Nobody needs HIQA to see this is wrong.

On the back of of a complaint about overmedication of a nursing home resident, a 2015 HSE report confirmed excessive administration of toxic drug-cocktails, especially strength-depleting benzodiazepines. Most psychoactive drugs the elderly receive are not licensed for them because with age, heartattack risk doubles and stroke-risk trebles. While only 1 per cent of older people in the community take anti-psychotic drugs, the corresponding rate for those in care homes rises to a shocking 20 per cent.

The hazards of a liberal medicines regime are very real. Doses are commonly too large and given too often and without daily limit, ignoring the evidence that person-centered care is more effective.

Extraordinarily, studies link two-thirds of nursing-home deaths to prescribed medicine. Inappropriate pills routinely used to treat transient symptoms and drug side-effects causing agitation become fixtures, while increasing costs. Recent UK actions to reduce such iatrogenic practices have proved more successful than merely measuring usage.

The pacifist writer and nurse, Vera Brittain, noted that regulations can stifle real care. Florence Nightingale, after Hippocrates, had it right: first do no harm. To assume that doctors know their business and identify the sickest patients for residential care would be wrong, agreed Alone, the advocacy association for vulnerable older people.

Launching its ‘Home First’ Campaign in June 2015, Alone claimed that in Ireland, over one third of long-term nursing-home residents have low to medium dependency needs, and could be cared for at home with adequate support. Cutting funding for home-help and housing adaptation grants yields only short-sighted, short-term savings.

Alone calls for alternative care models, alongside high-quality residential care for those who are genuinely heavily-dependent. The concept of ageing at home in the community is recommended everywhere, but the right organisational structures, investment, and commitment are vital for delivering widespread homecare services, ultimately much more cheaply. The mindset of local leadership is also very influential, creating geographical anomalies, as revealed by the ‘I’d prefer’ report, which also noted a worrying lack of transparency about service entitlements, and success-proof divergences between hours of support recommended at assessment versus how many are approved.

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The only option offered to most of those with diminishing independence is full-time nursing care. Sadly, formal admission often exacerbates the crippling features of old age. In Ireland the average stay is 1.6 years longer than that in England. Repeating troubling historic trends, Ireland places 35 per cent more of its senior population than the EU average in institutional care. Only 6 per cent of them consume 57 per cent of the elderly services budget.

In 2015, Home and Community Care Ireland, representing private home-care providers, criticised the short-term solution of opening more substandard beds and demanding more money from residents, instead of funding more homecare packages. Age Action concurred.

An extensive sheltered housing program designed on a continuum of independent living would go a long way to addressing the needs of people getting older. Individual units adapted for weaker bodies, fit for dignified human inhabitation. Too many pens for the herds exist already. Guaranteeing an adequate income to older people, such as the recently-proposed universal pension, would empower them to remain at home, where appropriate.

Since the number of Irish people over 65 is going up by an estimated 10 per cent annually, to reach 1.4 million in 2041, and one person in four will be over 65 by only 2045, the status quo isn’t even economically sustainable. The Central Statistics Office added that the percentage of older people will make up about 22 per cent of the whole population in 2041 compared to 11 percent in 2011. Review after review claim that designing services to satisfy users, be they elderly, mentally ill or other, pays on economic and health grounds.

It is a widely recognised fundament of a civilised society that it addresses the needs of its people from cradle to grave. And the elderly, coming to services at their most frail and vulnerable, are long overdue a response that minimises the trauma of transition, and respects their humanity. Currently, they are not getting the care they need. Families and doctors do not always know best either. More than enough reports have been released establishing the right thing to do for elderly people.

The ‘I’d prefer’ report calls for reforms to include active recognition of the rights, autonomy and dignity of older people, agreement on one, fair, national standard for needs assessment, and an annual specified budget for equitable community care.

The new Minister needs to co-ordinate relevant agencies to produce a fit-for-purpose strategy, and consult those directly affected. Increaced funding will help and implementing the ‘I’d prefer’ report would a good start.

By Caroline Hurley