Sarah hasn’t forgotten that night in a hurry.
She was one of two health care assistants (HCAs) on duty that night in the rest home – with one wing each to cover. Suddenly within the space of two hours, three of the residents died unexpectedly. “We were just running around – it was crazy.”
“I remember one had a frightened face that scared us … must have had a big heart attack.”
It wasn’t the dignified passing away that anybody involved wanted: the dying residents, their stressed-out, stretched carers, or the loved ones getting the unexpected phone call in the night.
Increasingly, more and more New Zealanders are dying in residential aged care. In fact, a research project looking at 16 million deaths across 45 million countries, of which Professor Merryn Gott of the University of Auckland’s school of nursing was a part of, found New Zealand had the highest proportion of older people dying in residential aged care. The average was 18 per cent and New Zealand is around 31 per cent.
With the median age in residential aged care now over 85, and residents increasingly frail and with complex co-morbidities, people aren’t residents for long.
As another recent study co-authored by Gott founded the number of residents dying within six months of admission to residential aged care in New Zealand was high – 20 per cent – and was even higher (36 per cent) for those admitted straight from acute hospital. This led the researchers to dub the residential aged care sector the ‘de facto hospice’ for New Zealand’s elderly.
“I just don’t think that we acknowledge that ‘palliative care’ is a big part of the work done in aged residential care,” says Gott.
By the time most people enter residential aged care, many have a ‘life-limiting illness’ and so fall under the broad definition of palliative care
New Zealand has adopted (see box on page 14).
That trend is also reflected in statistics, quoted by the New Zealand Aged Care Association in 2013, that the average length of stay of the 40,000 elderly in the sector in 2012 was around one year at rest home level and six months at hospital level care.
“As a society, we don’t just perceive residential aged care as fulfilling that (palliative care) role in the same way that we do a hospice and we certainly don’t resource it to the same extent,” says Gott.
This reality prompted the ‘de facto hospice’ researchers, led by geriatric medicine professor Martin Connolly, to call in their recent article in the Australasian Journal of Ageing for training and resources to reflect residential age care’s unofficial palliative care role.
‘De facto’ wrong label
The need to improve palliative care for the aged has also been recognised by Hospice New Zealand in recent years with the development of a specific training programme for the residential aged care sector. Though Anne Morgan, practice advisor for the hospice movement’s national body, is less supportive of calls to label residential aged care facilities as
‘de facto hospices’.
“I don’t like them being called de facto hospices for the very reason that a hospice provides multidisciplinary, holistic care, and it looks after body, mind, and spirit,” says Morgan.
“Most residential aged care facilities … they don’t have the resources for it for a start, and they don’t have the specialist knowledge to provide (hospice level) specialist palliative care.”
She says that doesn’t mean facilities aren’t offering palliative care. “They are doing it – and many of them are doing a very good job.”
But there are a number of impediments, including the need for education, which prompted the development of the Fundamentals of Palliative Care training package.
The nine-module package is delivered for free by hospice educators or similar specialists. It is designed for everybody working in residential aged care, from the HCAs, RNs, and attending GPs to the receptionist, gardener, and cleaning staff because “everybody involved with the care of the elderly is part of their palliative care”.
She says it is also known that the people patients will most often speak to are the cleaners, to whom they will tell their deepest fears while the cleaner tidies their room.
Morgan says the package has had a “huge uptake” since it was first rolled out in 2012 with thousands of modules taught across the country. The only module that is compulsory is the introductory ‘Essence of palliative care’ module, with the other modules – including pain and symptom management, ethical issues, palliative care for people with dementia, and staff caring for their own wellbeing – being optional.
The aim is to educate people working in aged care to provide generalist or primary palliative care. Morgan says most people don’t need specialist palliative care, and if they do, aged care facilities can call on the support of specialist palliative care teams across the country. She says what people in residential aged care all need is good primary palliative care.
Demand and burnout
There is no doubt of the burgeoning need for quality palliative care in the aged care sector.
The Palliative Care Council’s 2011 report looked at potential demand for palliative care by examining death records and estimating the number of deaths that may have benefited from palliative care. Its mid-range estimate, including deaths from cancer, circulatory, and respiratory diseases, was more than half of all annual adult deaths, or up to 19,000 deaths a year by 2026. The council also looked at where people with these mid-range palliative care needs have been dying. Twenty-five per cent of those deaths were happening in residential aged care, 47 per cent in hospitals and 17 per cent in people’s homes.
That same report says, “therefore residential care facilities will require adequate resources and appropriately trained staff, as well as access to specialist support, to deliver high-quality palliative care”.
With the aged care workforce already under pressure, another research project Gott was party to indicates that the extra resources might need to come before training makes a difference.
The project, led by Rosemary Frey, surveyed more than 400 clinical residential aged care staff – the majority HCAs – and found high levels of burnout and stress. The higher the burnout, the research found, the less likely staff were to report being ready to engage in palliative care education.
“We tend to think the solution is very straightforward – that we will just educate people and that will automatically lift the quality of palliative care – but we haven’t really thought about these other factors that restrain staff, particularly HCAs, in their work,” says Gott.
“Education isn’t the full answer. It absolutely isn’t,” agrees Morgan. “It is just one of the parts of the answer.”
“It is a very stressed workforce,” adds Gott. “They (HCAs) are receiving minimum wage, are often also facing challenges as immigrants to the country, and they are just not very highly regarded. There are news stories all the time about how aged residential care is failing people and quality of care is bad, and that must have an impact on staff morale.”
Whereas, says Gott, hospice workers – doing, in many cases, a very similar job to people in the aged care sector but with more support including clinical supervision – are seen as very special people to do the work they do.
“I think residential aged care provides some amazing care against the odds with the staff numbers that they have,” says Morgan.
“We have to recognise that many of the staff working in the facilities are paid very poorly and sadly many of the facilities are run on a business model, not a care model … you just need to look at the turnover of staff.”
In the business of dying
There is not much disagreement from the aged care sector with the notion that residential aged care could be viewed as a ‘de facto’ hospice.
“There’s no doubt that we’re in the business of looking after people as they die – more and more so,” says Gina Langlands, the quality and risk director for healthcare provider BUPA.
This is echoed by aged care nurse managers like Jeannie Sale, a Christchurch clinical manager with more than 25 years experience in the sector and Jean Colbeck and Chris Beckett, the facility manager and clinical manager, respectively, at BUPA’s Beachhaven Hospital.
They all report excellent support from teams at their local hospices – Nurse Maude and North Shore – for both education and advice for their 24-hour RN-staffed hospitals. “We can access the hospice at any time day or night. We just ring them for advice if we have a person we are a bit concerned about,” says Beckett.
They are also increasingly seeing end-of-life care as a major part of their facilities’ role. Not only in caring for elderly hospital residents but also, Sales says, it has become more and more common in the past decade for the aged care sector to find themselves caring for people under 60 with life-limiting illnesses, like people with end-stage COPD.
“The palliative care journey should really begin when they are admitted.”
She says the reality is that not all facilities have the resources to hold conversations with patients and their families on admission about end-of-life care, particularly younger patients, which can result in interventions that aren’t appropriate or necessary.
Advanced Care Planning is seen to be an initiative that could see aged care nurses able to raise and discuss what people wish and help work through end-of-life care expectations that can differ between a 55 or 65-year-old and those of a 95-year-old.
Nurses like Beckett and Sales believe elderly hospital patients with life-limiting co-morbidities want to be comfortable, pain free, and in familiar surroundings at end-of-life, rather than face a stressful end-of-life intervention or deathbed trip to a public hospital.
“At the end of the day, as nurses, we appreciate the trust that people put in us for caring for their dying elderly and people who come to us palliatively,” says Sales. “It is not appropriate for people in aged care hospitals to be sent off to public hospital to die. We do need to have that good plan.”
“Moving towards allowing a natural death is very difficult for some people,” says Colbeck.
Many families can call for antibiotics to fight chest infections in a frail relative rather than to relieve symptoms and to continue feeding with nasogastric tubes when the patient is frail and unconscious.
The trio also hold in common the belief that aged care facilities without nursing expertise should not take on palliative care patients or continue to care for elderly end-of-life patients with complex co-morbidities needing pain pumps and other specialist support.
“I feel very strongly that rest homes shouldn’t be having patients with those needs (i.e. pain pumps) unless there is 24-hour registered nurse coverage,” says Sales.
Beckett and Colbeck agree. “Our RNs are skilled at putting up pain pumps and they can do that night or day anytime.”
The difficulty emerges at rest home-only level care when a night duty HCA has to get the on-call RN out of bed to set up a pain pump for a patient in need. Not all facilities have their own GP on-call 24 hours a day to prescribe pain relief.
“I also really feel we should have mandatory staffing levels in aged care facilities. Here, and most places I’ve worked, we have one staff member for five hospital care patients,” says Sales.
“But a lot of places it is a much higher workload – up to six or seven hospital care residents – and if you’ve got one dying patient in that mix, you can’t give them the proper care.
“If we had mandatory staffing then it (aged care) would always be a safe place for people to be cared for at end-of-life.”
Morgan was due to speak to an all-parliamentary meeting in late May representing aged care palliative care to outline some of the challenges faced by the sector, including staffing levels.
“We are going to be in dire straits if we don’t look at the care of our older persons.”
She agrees that if you want to deliver best practice at end-of-life care with only one care staff member for seven people then “something has to give”.
“If you give your time to the dying, what happens to the living?”
To Morgan, best practice palliative care is about affirming life until we die, which means putting quality of life into each of those days. This means not only good symptom management, including pain management, but also seizing the moment and skipping a shower to take a patient out for one last visit to the garden on a sunny day.
Nobody seems to be arguing for funding of hospice-level specialist palliative care for residential aged care – and hospices point out that they are heavily reliant on fundraising and donations to top up state funding to be able deliver to the specialist care that they do to their communities.
There is an argument that if New Zealanders want their mothers, uncles, granddads, and great-aunts living in rest homes to get consistent, quality primary palliative care, more than education is needed.
Of course, death will never always come neatly at a convenient time, with family gathered at the bedside, a favourite nurse or caregiver hovering nearby, and a pain pump easing any suffering.
But with more resources, more staff, and more dedicated training, residential aged care may be more often able to give the dignified and comfortable death we all want, without stress and without compromising the care of the living.
The New Zealand definition of palliative care is:
Care for people of all ages with a life-limiting illness which aims to:
- Optimise an individual’s quality of life until death by addressing the person’s physical, psychosocial, spiritual and cultural needs.
- Support the individual’s family, whanau, and other caregivers where needed, through the illness and after death.
Generalist palliative care is palliative care provided for those affected by life-limiting illness as an integral part of standard clinical practice by any healthcare professional who is not part of a specialist palliative care team.
Specialist palliative care is palliative care provided by those who have undergone specific training and/or accreditation in palliative care/medicine, working in the context of an expert interdisciplinary team of palliative care health professionals.
Current inequalities include access for Māori, Pacific peoples, isolated communities, children, the very old, those with non-malignant disease, as well as those with special needs: asylum seekers/refugees, people in prison, and those with mental illness.
From: NZ Palliative Care: A Working definition 2007
Dementia and palliative care
One of the chronic conditions associated with old age is dementia. It is recognised now that dying with dementia, like dying of other chronic illnesses, can be equally as bad as cancer, says Anne Morgan.
“Dementia is one of our biggest issues with the ageing population … it’s going to be just enormous, really, and without good quality palliative, their deaths can be quite traumatic,” says the hospice New Zealand practice advisor.
Dr Kay de Vries, head of Victoria University’s postgraduate school of nursing, research focus has been palliative care, particularly dementia, with her doctoral research in the UK indicating increasing numbers of people with dementia being referred to hospices in the past decade, from virtually none in the past.
“It’s been recognised in the literature for a long time now that this group does definitely need palliative care input … they have very similar physical symptoms and difficulties to people who are dying from anything else, like cancer,” says de Vries.
“Sometimes those symptoms go on for much longer as well … so having people with expertise in palliative care being involved with their care at end of life is pretty essential I think.”
She has written a chapter on end-of-life care for The ABC of Dementia, a book published this year in the UK, in which points out that in many cases professionals and families do not view dementia as a terminal illness and have little knowledge or understanding of the possible causes of death.
“However, people with dementia who are dying have significant health care needs and there are particular challenges and ethical dilemmas that both families and caregivers encounter.”
It is encouraged that initiation of discussions about death and dying should take place at an early stage when the person with dementia can participate meaningfully.
As aged care facilities are where the majority of people with advanced dementia live and die, de Vries believe such facilities need a combination of people with palliative care skills and specialist dementia care skills.
Anne Morgan, herself an experienced oncology and palliative care nurse, made the decision to take her own mother with advanced dementia out of residential aged care because her mother was declining. She was not eating, her only communication was distressed sounds, and they thought she was dying.
“But in actual fact when I tended to her needs, she came to and started eating and engaging with the family again.”
She ended up living for not just a few weeks but 20 more months, and the family had some special time together, but also some major struggles to get support services into the family home.
Despite those struggles, Morgan didn’t consider putting her mother back into care as she wasn’t seeing recognition of the need for palliative care for people with dementia. Neither did her GP regard advanced dementia as a reason for referral for specialist palliative care for her mother in her last dying weeks.
“There’s still an ignorance or lack of recognition of dementia as a life-limiting disease.”
Research: Nurses active ‘proxy’ role in palliative care prescribing
A New Zealand and Australian research team’s work looks to confirm that community nurses play an active role in palliative care prescribing, though not prescribers themselves.
Dr Kay de Vries and other members of the research team made a conference presentation earlier this year on some initial findings from their survey of nurses working in community palliative care on both sides of the Tasman.
The initial analysis indicates that, while only a handful had prescribing qualifications, most had 25-plus years nursing experience. And the vast majority of the palliative and district nurses discuss prescribing frequently with their palliative care patients, particularly when the patient is deteriorating, and more than 85% recommend prescriptions – typically pain relief – to the prescribing physician.