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 fifth of eight in-depth feature and opinion articles.

“All New Zealanders live well, stay well, get well” is the theme of the New Zealand Health Strategy. All that is missing is “die well”.

Many people commented on this omission from the strategy, as helping people to have a ‘good death’ is seen as one measure of a quality health system – and access to good palliative care in New Zealand currently can be a postcode lottery.

It’s likely that the odds will get worse, with the need for palliative care jumping by 50 per cent in 20 short years.

At present about one in three people who die each year will have some access to specialist palliative care services – be it a community-run, hospice-based service or a public hospital-based service.

But it is the majority of dying people who get no access to any specialist service that researcher Professor Merryn Gott is most worried about – including the “oldest of the olds” and people dying of conditions other than cancer, such as dementia and chronic illnesses like heart and respiratory failure.

“Those are the people who have the worst end-of-life experiences,” says Gott, the director of the University of Auckland’s Te Arai Palliative Care and End of Life Research Group. “We need new models of care – urgently – for that group”.

As in the last week of life there is no difference in the symptoms or care needs of people dying of cancer, dementia or with organ failure, found aged care nurse practitioner Dr Michal Boyd in her recent research into dying in residential aged care. The difference is in the specialist palliative care support they receive.

“Thirty per cent of people who died of cancer had hospice involvement, where only five per cent of those with dementia had hospice involvement,” says Boyd.

“We have always had palliative care for cancer, but we’re trying to get our heads around palliative care for people with dementia.”

It is a given that our already thinly and unevenly stretched specialist palliative care services cannot offer palliative care to the spiralling numbers of New Zealanders needing end-of-life care. And, of course, not everybody needs specialist help.

But many dying people will require, and want, help to die well – not just in the last weeks or days of life, but in the months or the year or more leading up to their deaths. And in the future a very small minority may request, and be eligible for, legal medically assisted dying.

There are question marks over whether our specialist services have the resources and the time to train and support residential aged care, general practices and district nurses to meet the burgeoning need for generalist palliative and end-of-life care in the community.

Or to support the hospital generalist staff who may find themselves increasingly as end-of-life carers to the “oldest of the old” dying on an ED trolley or in a general medicine ward.

More health professionals will need increased expertise not only in offering pain and symptom relief and physical care needs to the dying person, but also in helping to meet the emotional and spiritual needs of the person and their loved ones.

Health Central finds out more about death trends and the readiness of our health system to meet our future dying needs

Death rate dipped and now on rise

In the latter part of last century, New Zealand’s death rate dipped to an all-time low as antibiotics and improved maternity, heart and other health care saw more Kiwis living to a ripe old age.

Our population grew, but the low death rate meant the number of deaths stayed remarkably stable, with between 1,985 and 2,010 deaths sitting at around an average of 28,000 a year.

But we all have to die sometime and as the baby boomer generation (born 1946-1965) ages, New Zealand’s death rate is expected to swing back up again to levels not seen since the 1940s and 1950s. Twenty years from now, in 2038, the number of deaths is projected to rise by around 50 per cent to 45,000 and by 85 per cent to 58,500 by 2068.

These Stats NZ figures were used by Professor Heather McLeod, a health actuary and former senior analyst in palliative care for the Ministry of Health, to produce a report in 2016 for the Ministry on the projected need for palliative care for New Zealand’s ageing population.

McLeod, currently a consultant and Honorary Senior Research Fellow at the Te Arai Palliative Care and End of Life Research Group, this year revised her projections to reflect the latest death statistics, which are indicating that the peak of baby boomer deaths is going to be earlier, higher and more sustained than initially projected.

The result is an estimated 3,000 deaths a year by 2068 above the projections made in 2016. She says to put this in perspective, the Northern Region’s 11 hospices last year provided care for just over 3,000 deaths (around 2,500 of those by Auckland’s seven hospices).

Will New Zealand’s palliative care services be ready to cope with the upsurge in demand in the next decade or so? McLeod says that is a complex question to answer. Part of the answer may be New Zealand’s willingness to take on the Australian approach of regarding palliative care as ‘everybody’s business’, not just a specialist service. “We have not embraced palliative care like that here in New Zealand yet.”

To some extent we have also been a ‘death-denying society’ that has focused on living well and avoiding talking about what dying well means.

In a search through New Zealand’s health policy documents a few years ago, McLeod says she was astounded to find how very few references there were to death and dying.

She says the first sign of changing policy attitudes to death was the Ministry of Health’s 2016 Healthy Ageing Strategy vision, which includes older people not only living well and ageing well but also having a “respectful end of life”. Then there is the Advance Care Planning initiative, which encourages people to have ‘conversations that count’ about their expectations of what care they want or don’t want at the end of their lives.

Talking about dying well  

The discussion about dying well has also stepped up in recent years alongside the debates of the pros and cons of legalising assisted dying – prompted firstly by Maryan Street’s petition and currently David Seymour’s End of Life Choice Bill, which is at the stage of hearing Select Committee submissions.

People are starting to talk more openly about their expectations of dignity and choice in death and of their experiences – good and bad – of palliative care.

Whether New Zealand goes ahead with some form of legalised medically assisted dying or not, the expectations and demand for palliative care will be high. International experience indicates that referrals for palliative care tend to go up, not down, in jurisdictions with legally assisted dying.

And a government report in Canada – where medically assisted dying was legalised in mid-2016 – says medically assisted deaths comprised less than one per cent of all Canadian deaths in the first half of 2017. This was consistent with the statistics of other jurisdictions with some form of legalised euthanasia, where assisted deaths make up between 0.3 per cent and 4.6 per cent of all deaths.

Policy and funding have yet to catch up with the projected increased demand for palliative care.

In a World Health Organization (WHO) review released in 2014, New Zealand ranked among countries such as Chile, China, Tanzania, the Netherlands and Denmark for our provision and integration of palliative care services into our mainstream health system and policies.

Interestingly, many of the countries in which forms of assisted dying are now legalised (either nationwide or in some states) – such as Belgium, Canada, Switzerland, the US (Oregon) and Australia (Victoria) – were ranked by WHO as having the best provision of all types of palliative care.

The Ministry commissioned McLeod’s 2016 report and last year completed and published the Review of Adult Palliative Care Services in New Zealand and the resulting Palliative Care Action Plan.

The review found that current barriers to well-coordinated palliative care services across the country included the uneven distribution of palliative medicine and palliative nursing specialists, inconsistent referral criteria, funding disparities and the need to build palliative care capability among general practice teams and aged residential care staff.

The last targeted new funding for palliative care was announced in 2015, when the Government allocated $13 million a year for four years for hospices to expand their palliative care support services to people dying at home or in residential aged care, plus $10.1 million over two years for hospices to recruit more nurse specialists, educators and other roles.

Last year’s Health Select Committee report – following the hearing of 21,000 submissions on the Maryan Street medically assisted dying petition – suggested that the Government should investigate the way that palliative care was funded and how to “promptly” reduce the inequities in palliative care across the country.

Op shops and cake stalls

Nobody expects maternity services to be funded by op shops, cake stalls and corporate sponsors.

But its community origins means that the country’s hospices – collectively the largest provider of specialist palliative care services – are on average reliant on fundraising for about 40 per cent of their running costs.

Mary Schumacher is the chief executive of Hospice New Zealand, which represents the national network of 34 hospice services. Some are large, with both inpatient hospice services and community services, and about a third are small, with community services only.

She says Hospice New Zealand is concerned about uneven access to services across the country and is working very closely with the Minister and the Ministry and having “positive discussions” about how to fund palliative care to meet current demand, unmet needs and future projected demand.

“The approach around funding hospices has been a little bit ad hoc,” she says, referring to the diverse contract arrangements with DHBs, which leave hospices with little ability to plan ahead with funding certainty or meet growing needs in areas like dementia and chronic conditions.

She is also aware of some really “sad and concerning” cases where people have died without access to good palliative care and says the hospice movement – which is openly opposed to legalising assisted dying or euthanasia – doesn’t believe New Zealand is ready to have a conversation about legalising assisted dying.

“Our view is that we don’t want to talk about euthanasia until everybody in New Zealand gets really good access to quality end-of-life care and palliative care, and we know for sure that everybody’s needs are being met.”

Last year’s Palliative Care Action Plan acknowledged that while many people “die well” in New Zealand, there were inequities and “not everyone can access high-quality, culturally responsive care when and where they need it” with Māori and rural people in particular having “variable” experiences. It also acknowledged that the plan had to work within “current fiscal constraints”.

Even obvious candidates for specialist palliative support – like people dying with motor neurone disease – cannot always get the support they need. The Motor Neurone Disease Association of New Zealand in its recent submission on the End of Life Choice Bill not only called for ‘genuine choice’ in end-of-life care for clients – including the choice to use or not use assisted dying – but also advocated for an increase in funding and improved access to palliative care. Including funding to increase specialist palliative care services to rural areas, inpatient services in small towns and increased respite beds in hospices (not private hospitals).

To date no modelling has been done on how many inpatient hospice beds or palliative care specialist and generalist health professionals are needed to meet the projected rise in palliative care needs over the next 20 years – a 51 per cent growth in deaths needing hospice services care, a 37.5 per cent increase in palliative care needs in public hospitals and the staggering 84.2 per cent increase in palliative care needs in residential aged care.

Last year about one in three people who died (amounting to around10,030) were supported by hospices, with less than a quarter of those dying in an inpatient hospice bed (23.7 per cent), just over a quarter in residential aged care (25.9 per cent), a third at home (33.9 per cent) and 13 per cent in public hospitals. Most of the people (70 per cent) supported by hospice had a cancer diagnosis.

Wayne Naylor, director of nursing at Hospice Waikato and a former senior analyst for the now-disbanded Palliative Care Council of New Zealand, said hospices were looking at how they manage their community nursing services sustainably into the future, and in particular meet the needs of both aged and rural care.

“Already, in the five years I’ve been at Hospice Waikato,” he says, “our referral numbers have doubled from about 600 a year to 1,200 a year now…”

Big issues for hospices are not only meeting the growing demand – including for Waikato nurses travelling to patients from the tip of the Coromandel Peninsula in the north to Taumarunui in the south – but also the continuous grind of fundraising, with some receiving even less than 60 per cent of their funds from the Government.

“We don’t have a consistent and sustainable funding model for hospice palliative care in New Zealand at the moment,” says Naylor.

Dying in rest homes, home and hospital

Another sector feeling under major funding and resource pressure by the increasing death rate is residential aged care.

The most major noticeable trend, since deaths started trending upwards in 2010, has been residential aged care emerging as the most likely place for Kiwis to die (33 per cent in 2013 compared to 32.7 per cent in hospital). (For more in-depth coverage of this issue, see the related Death Series article: Are rest homes becoming de facto hospices?)

Michal Boyd questions the fairness of elderly dying people being shuffled from home to hospital to hospice to hospital before being transferred to residential aged care to die.

“We [aged care] have a 1:30 nurse-to-patient ratio and they’ve just come from a hospital with a 1:6 ratio or a hospice that’s 1:3 – how is that fair?”

High numbers of people will also continue to die in their own homes or family or friends’ homes.

Some deaths will go smoothly, but Merryn Gott says her group’s research shows that many family carers struggle with navigating disjointed and complex health and social care services to get care for their dying family members.

A couple of carers also talked about feeling unsupported and traumatised at having to be the ones to relieve their family members’ pain by giving morphine injections. Some carers feel guilty for struggling to care for the dying person at home, while others are grateful to have the opportunity. Some receive specialist palliative care support and others do not.

“Through our research we have been really shocked at how little health and social care that some people receive at the end of their lives,” says Gott.

She thinks new models of community palliative care provision are needed and – with the reality that most palliative care is provided by nurses – an option her nursing school-based research group is looking at is optimising and supporting community nursing roles, particularly district nurses, to make the best use of their skills.

Dr Sinéad Donnelly, a public-hospital based palliative care specialist, says ideally there should be a palliative care team of doctors and nurses in every New Zealand hospital because a third of people die in acute hospitals “so they shouldn’t be deprived of the expertise of a palliative care team when they are dying”.

Currently there is a team in all major hospitals who can support their colleagues in surgery and medical wards with expertise not only in pain relief but also in social, emotional and spiritual support.

Donnelly says it is not just up to the palliative specialist teams to provide end-of-life care: “It is really up to every healthcare professional – the generalist nurse, hospital doctor and GP to have some experience and skill in caring for people who are dying.”

She believes that every GP as part their training should go through a minimum of three months attached to a palliative care unit because they will be looking after dying people.

“GPs are very keen to care for people who are dying and most GPs I know love that part of their work, but they have a duty to make sure they have the skills and knowledge to use medication, to effectively sit with people and listen to their anguish, and to know how to get extra help if required.”

The coming “tsunami” of dying needs in primary care

Does the primary health care sector feel ready to step up its role in palliative care?

Dr Tim Malloy, president of the Royal New Zealand College of General Practitioners, says he has long been advocating for ensuring primary healthcare has a fit-for-purpose workforce to meet the tsunami of need associated with our ageing and growing population.

“The burden of disease – of which palliative care is a significant component – is simply going to escalate.”

He says the long lead-in time to train and develop the generalist and specialist expertise needed means action is needed “right now”.

“The reality is that this health need will not be met by a small group of palliative care specialists around the country – it will need to be met by the whole health workforce and specifically the generalist workforce in terms of general practitioners, practice nurses, rural nurses and all of the other primary care practitioners working together supported by our palliative care specialist colleagues.

“We have to either start taking it seriously or live with the consequences as the tsunami arrives.”

Dr Jan White, chair of the New Zealand Medical Association’s GP Council, agrees that if general practices are increasingly to become primary providers of palliative care, then more GPs, more nurses, more training and more funding will be needed. “You can’t do palliative care in a 15-minute consultation.”

Naylor says that unfortunately palliative care is still not a big part of any undergraduate health professional training – so doctors and nurses can enter the workforce with very little knowledge.

Of the primary care generalist nursing workforce, he says, probably the most skilled in offering end-of-life care in the home are district nurses, but they too need support from specialist palliative care nurses in the community for patients with complex needs.

Naylor says that, historically, practice nurses have had little involvement in end-of-life care, although hospices are trying to encourage more to become skilled in this area, but the GPs they work with may not manage end-of-life care for many patients a year. For some, it may be as few as 10 and for others 20 or more, which can create a challenge for GPs and nurses to build and maintain their palliative care skills.

Government response to ‘dying well’ needs

Health Minister Dr David Clark says he is well aware that the demographics mean that “demand for palliative care services is increasing and will continue to do so over coming decades”. And he has “enormous regard” for the work done by people in the palliative care sector to provide comfort and support to dying New Zealanders and their loved ones.

“I know there are questions about equity of access to palliative care services, as in many parts of our health system.” He expects that the recently announced Health and Disability System Review work, which has been tasked to look at who is missing out on services, will feed into the work already being conducted by the Ministry of Health into how to prepare for the projected increase in palliative care demand – including examining workforce and funding issues.

Clare Perry, the Ministry of Health’s Group Manager Integrated Service Design, says the Ministry has sought more information on the “overlaps and gaps” in services on national and regional levels, including differences in access for people by diagnosis, ethnicity and deprivation. It has commissioned a further research project by Heather McLeod, due in October 2018, to help inform planning across all relevant settings and ensure people receive the right care in the right settings at the right time.

Hopefully, the result will be more Kiwis having the opportunity to live well, stay well, get well and die well.

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