Death is inevitable. But for many it remains the last taboo. Modern medicine means we can prolong life like never before. Assisted dying legislation currently before Parliament may mean – in special circumstances – we can control death like never before.

Health Central’s Death series will explore the health aspects of death & dying in New Zealand. This is the second of eight in-depth feature and opinion articles.

Faye is dying. She isn’t facing a dramatic or violent death. She isn’t battling any major disease. She has simply reached the end of her life. She is 93 years old.

Faye lives in the same small rest home she moved into three years ago. Her gradual deterioration in health is something her caregivers have noticed. And as her health slides, her care needs increase.

Faye has been moved to a hospital bed with a special ripple mattress. She can’t get out of bed easily anymore. She needs at least two caregivers looking after her, to feed her, shower her, clean her mouth, and change her regularly. She requires a lot of incontinence products now.

Faye’s daughter and son-in-law are by her side a lot in these final days. The rest home looks after them too, making sure they are fed and comfortable, answering their questions, letting them stay overnight if they wish.

This is end-of-life care. And rest homes say the Government isn’t giving them enough money to do it properly.

Population predicament

Faye represents a growing number of New Zealanders dying in aged residential care.

“Residential care has long been the most likely place of death for New Zealand women, but is now also the most likely place of death for those with cancer. It is very close to becoming the most likely place of death for men, across all ages and causes of death,” says Professor Heather McLeod, Honorary Senior Research Fellow at the University of Auckland’s Te Arai Palliative Care and End of Life Research Group.

“As people live longer and in bigger numbers, the demand for palliative care is growing and it’s increasingly being provided in rest homes.”

McLeod points to Ministry of Health Mortality Collection (MORT) data, which classifies the causes of all deaths registered in New Zealand and shows that the proportion of deaths that occur in residential care has increased from 27.6 per cent in 2000 to 36.0 per cent in 2015, while the proportion of deaths in public hospitals has declined sharply. Residential care surpassed private residence as a place of death in 2011 and had almost reached the level of deaths in public hospitals by 2015.

Furthermore, Stats NZ’s national population projections estimate 58,500 deaths in 2068, an increase of 85 per cent from the 31,600 deaths projected this year. The population is projected to increase by only 34 per cent over the same period.

The new normal

Of course, this is not news to aged residential care providers. It hasn’t escaped them that the nature of care delivery has changed. Demographic change is not the only factor here; the increasing frailty of people admitted to rest home care is also playing its part.

Thirty years ago, residents checked themselves into rest homes as they would a motel. Those were the days when rest homes had car parks to accommodate residents’ cars.  Today, the thought of residents behind the wheel is inconceivable.

Increasingly, rest homes are looking after very frail older people as they reach the end of their lives. In alignment with government policies around ageing in place, a rest home referral is generally now given only to people with very high needs. So, the reality is that within a rest home, Faye’s situation and care requirements are now fairly standard practice.

Rest homes are fast becoming de facto hospices.

Recognising the role of rest homes

However, funding for rest homes has not kept pace with the changing demographics and care demands and the sector wants to see palliative care funding reflect the new normal.

New Zealand Aged Care Association (NZACA) chief executive Simon Wallace says district health boards are referring older people with complex health needs to aged residential care, not hospitals.

“I would argue that for that reason we would need more support for that.”

“We’re increasingly dealing with people with much higher acuity. So if we’re taking that load off the public hospital system, we should be recognised for that.

“Aged residential care needs to be recognised as a core part of the health system  – currently we sit outside this, despite providing a valuable service.”

Wallace says all Kiwis should have access to the best possible palliative care, regardless of where it happens.

“Regardless of what setting someone is dying in, they should be entitled to that same level and quality of care. Whether they’re in a hospital, whether they’re in a hospice, whether they’re at home, whether they’re in a rest home – regardless of the setting, they should be entitled to that same level of care.”

Heather McLeod agrees that standards of care need to be consistent, regardless of where it is carried out.

“It is essential to implement and monitor common outcomes measures across all settings of care.”

McLeod says palliative care should be included in aged residential care contracts.

As things stand, current aged residential care funding does not recognise the additional care, equipment and family support provided by rest homes when delivering end-of-life care.

Dr Brian Ensor, the clinical advisor to Hospice New Zealand, says the funding support for people dying in aged residential care is “really urgent”. He agrees the aged residential care sector does not get the support it needs; meanwhile, hospice services are morphing more into acute symptom management rather than a “place to go to die”. Most people receiving hospice services do not die in a hospice, says Ensor. This includes people discharged from hospice care to aged residential care with follow-up support.

Mary Schumacher, chief executive of Hospice New Zealand, is also concerned about unmet palliative care needs and projected growth. She says Hospice New Zealand is talking with the Ministry and Minister of Health and working with the aged residential care sector and primary health care sectors to try and help address this.

Government response

The Government argues that it is prioritising palliative care.

Clare Perry, group manager integrated service design, Ministry of Health, says the Ministry recognises that providing good end-of-life and palliative care can represent some of the most challenging, and yet rewarding, experiences in health care.

“People receiving this care, their families and whānau, along with health professionals, all want to achieve outcomes that are graceful, dignified and clinically appropriate,” she says.

“We also acknowledge the work of aged residential care providers in providing these outcomes for thousands of New Zealanders.”

Budget 2015 provided funding of $76.1 million for hospice service delivery, which included $24.1 million over four years to support the delivery of new palliative care services and innovation in aged residential care, primary care and community settings.

“I think those have been relatively successful,” says Wallace of the hospice/rest home collaborative programmes, “but they have been limited in the penetration they can get around the country.”

In recent years the NZACA has argued that residential aged care providers should receive a distinct palliative care supplement. Wallace points to reforms in the UK, the US and Australia that have all shown that a supplement paid for palliative care benefits the whole health system by ensuring that high-quality palliative care can be provided in residential care and community settings, thereby reducing costs for hospitals.

Yet calls for a palliative care supplement for providers went unanswered by the Government. Wallace says palliative care funding is not on the table for this year’s annual provider-DHB contract negotiations either.

However, the Ministry of Health has confirmed that it will be considered within the aged residential care sector’s Funding Model Review, which will look at alternative funding models for aged residential care. The review, led by EY under the guidance of a cross-sector steering group, has been underway for approximately three months.

“It will examine the existing funding model, consider its strengths and weaknesses, then develop and prioritise future funding model options.  A final report with recommendations will be delivered in December 2018,” says the Ministry’s Clare Perry.

“The review will work extensively with aged residential care providers, older people, the aged care workforce, consumer bodies, clinicians and government. Interested parties will get the opportunity to have their say on the current funding model and their aspirations for the future model.”

Over 2015 and 2016, the Ministry’s Review of Adult Palliative Care Services in New Zealand found that most people’s palliative care needs can, and should, be met through good primary palliative care in primary care settings – home, hospice, aged residential care – and hospital settings.

An action plan was subsequently developed in 2017 with the oversight of the Palliative Care Advisory Panel. The plan, which takes a holistic, person-centred approach, outlines how to tackle the five priority areas identified in the review, including improving the quality of palliative care in all settings and increasing the emphasis on primary palliative care.

The release of the Te Ara Whakapiri guidance and toolkit documents last year has helped to equip providers with the necessary approaches and tools. However, what is still missing, essentially, is the money.

The action plan, while undoubtedly a good compass for palliative care, is a little light in detail, especially around reviewing current funding mechanisms. And the funding model review still feels a long way from delivering any certainty on this issue.

One size does not fit all

Perhaps one reason funding is proving problematic is because there is some confusion over what constitutes palliative care in rest home settings.

The 2012 Resource and Capability Framework for Integrated Adult Palliative Care Services in New Zealand recognised the confusion around palliative care services and the lack of understanding around the contribution of the allied health workforce.

In answer, the Ministry of Health released its New Zealand Palliative Care Glossary, which defines end-of-life care as the care guided by a person’s needs and goals, and “is the responsibility of all who work within the health sector”.

Palliative care is defined as care for people with a life-limiting or life-threatening condition and specialist palliative care as provided by those who have undergone specific training, working in the context of an expert interdisciplinary team.

Care Association New Zealand’s Victoria Brown gets frustrated when people talk about palliative care and end-of-life care as the same thing. She breaks it down into three main categories within a rest home setting.

The first is respite care, provided for people from the community who need extra care during their final weeks or days.

The second is palliative care, characterised by those residents who face a dramatic and unpleasant death, often due to a sudden illness, like cancer. In these cases, a doctor will prescribe specialist palliative care services, and hospice nurses will oversee the care delivered at the rest home.

“In these cases, all the medication and care is provided by the hospice nurses on a daily basis. Our costs don’t change that much,” says Brown.

However, Wallace says specialist palliative care services that are available in a hospital or hospice are not always readily accessible to residential care facilities.

“A smaller provider would have very limited access, depending on where they are. If they don’t have an arrangement with their hospice they would have limited access to [specialist] palliative care.”

In any case it is the third category that largely concerns rest homes, and largely goes unrecognised by funding mechanisms.

This is the category that the aforementioned Faye  and most other people who die in rest homes fall into: end-of-life care. There are no major medical events, or upheavals required; they have simply reached the end of their lives. Brown says in these cases, there usually isn’t anything additional required from any other agency; however, the facility has to do a lot of extra work and bear the extra costs involved.

Why rest homes need extra funding to deliver end-of-life care

As in Faye’s example, someone in their final weeks or days is typically confined to their bed and requires the support of at least two caregivers to help feed, clean and change them. In addition to increased wage costs due to the intensive care required, special equipment and products are generally needed. Yet these are not funded.

Brown says at her facility she has hospital beds, hi-low beds, and excellent pressure mattresses, as well as equipment to prop residents up and support their limbs. And this has all been paid for out of her own pocket.

Then there are incontinence products, which are used heavily at this stage of life: special soaps to help keep residents’ skin moisturised, and products to clean their mouths.

And on top of that there are extra doctors’ visits and ensuring  the families are supported and looked after.

“These are things that should be funded or provided,” says Brown.

Wallace agrees.

“We’re not paid anything for it. There’s no extra resourcing or funding,” he says.

“What it comes down to, for the most part, is aged residential care is not set up like a hospice and does not have those services that include the support needed for the families.”

Brown says facilities feel that end-of-life care is part of their role – an important part. They don’t want to see it passed to someone else, they just want to see it recognised, she says.

“People say ‘those people should be in hospital’ but I disagree, because at that stage of their lives, you know what the outcome is going to be. Why would you just send them off to a completely foreign place?”

Brown goes as far as saying that a move to hospital can often be detrimental to a resident’s health and traumatic for the family. She believes that, in many circumstances, it is best for the resident to stay put and receive care from familiar people in familiar surroundings.

“It’s also a cheaper option than flinging them into a hospital.”

Ensuring capability

Victoria Brown is critical of the argument that end-of-life care always requires 24-hour nursing care.

“There’s a massive misunderstanding of what actually happens on a day-to-day basis. The day-to-day hands-on stuff is not done by RNs, it’s done by caregivers. Nobody understands this anymore. Caregivers are very highly skilled. Caregivers are the backbone of the rest home.”

Mary Schumacher, chief executive of Hospice New Zealand, says with the projected growth in deaths – and many of those to happen in rest homes – it is important that staff are supported and confident in providing that care.

“Aged residential care [providers] are experts in caring for older adults – it’s bringing that expertise together with palliative care expertise.”

In fact, the industry is providing more support than ever for caregivers to upskill in this area. With the support of Hospice New Zealand, industry training organisation Careerforce is now offering a learning support and assessment package for people supporting a person with palliative and end-of-life care needs.

The aged residential care sector is clearly up for the challenge of providing end-of-life care – after all, it is a challenge they have been tackling already for some time. But as our ageing population continues to soar, and people admitted to residential care present as increasingly infirm, it won’t be long before rest homes call time on what is fast becoming an exercise of goodwill and a labour of love.

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