If a doctor could tell you when you were going to die, would you want to know?
If you were going to die in the near future, would you want to know so you could make plans for the end? Nicholas Jones reports
If a few simple questions could reveal you likely have less than a year to live, would you answer? Yes or no, a doctor working in a busy emergency department would probably appreciate the insight into a patient’s probable lifespan.
Knowing could avoid unnecessary and sometimes harmful treatment, and alert other services — like a GP or home care provider — to make sure they’re looked after.
Waikato DHB is interested enough to have developed a way to identify those not long for this world, as part of a special “last 1000 days” programme.
Anonymised medical and home support records of thousands of the recently deceased were combed over, and a handful of telltale signs found.
That formed the basis of a sort of flow chart of death, officially called a “decision support tool” and designed for ED doctors.
At the top of the chart is the first question — is the patient over 65 (55 if Ma¯ori or Pasifika) and been assessed for age-related disability support (such as getting help around the home) in the previous three years?
Yes, and arrows lead to further queries: Does the patient need physical assistance or supervision for personal hygiene, locomotion (moving from place to place) and dressing their lower body?
If the answer is “Yes” to all three, the eye is drawn to a box that bluntly states: “81 per cent dead within 12 months”.
“No” to all and the odds are almost even — 45 per cent dead within the year.
This version of the flow chart was presented to the DHB’s hospitals’ advisory committee last year.
Dr Sarah Fowler, medical director for Waikato DHB medical services, says the work is still in development, and might never be approved for use. A bigger challenge is planning what happens after screening, she says.
WHAT NEXT? A palliative care service? Or do they go through a geriatric service, or a GP? . . . it’s not as easy as putting in a tool. Because if you put in a tool you need an outcome. And if you need an outcome you need the staff to do that outcome.”
Despite the complexities, Fowler can see how a “quick and easy” screening tool could be useful to ED staff. It wouldn’t direct treatment but “guide conversations” with patients and families about options.
Some might be opted against if a person was likely to die within a few years, she said. The benefit of a heart valve replacement in keeping someone alive doesn’t kick in until about 18 months later, for example. Injections for osteoporosis take the same timeframe to work.
“The way health is going, I think it is very sensible that we work in partnership with patients who are likely not to be alive at three years, best guess . . . and then say, ‘What would you want for those last 1000 days?”’ Fowler says.
“You should never use age alone [as an indicator]. You need to use tools that are much better than that. And this is one of them.”
A recent report by the Ministry of Health found New Zealanders were living longer in poor health, as life expectancy outstripped what is known as health expectancy (how many years we live in good health).
On average, New Zealanders are living about a decade in poor health: from 1996 to 2016, average years for women rose from 10.9 to 11.6 years, and for men from 8.8 to 9.8 years.
Fowler has seen big changes while working for more than 20 years as a geriatrician.
“People used to die after their first or second heart attack, or their first cancer or first stroke.
“Now, people survive a number of illnesses before they get to their terminal illness. I’ve treated someone in their 90s who has had two cancers, three heart attacks, four surgical interventions, a couple of strokes. You’re like, ‘Whoa.”’
Heroic treatments aren’t everyone’s cup of tea, she says, particularly if they’ve lost a spouse, siblings and friends.
“We see people in their 80s and 90s, and often their children will be going, ‘Oh, give Mum one last heart valve.’
“I had a lady say, ‘I’m 82 and I’ve had three hips already. Don’t give me a fourth — give it to the 65-year-old I saw in clinic last week.”
THE NUMBER of Kiwi superannuitants will boom from 730,000 to about 1.3 million in the next 20 years, an increase that threatens to overwhelm the public health system.
Successive Governments have tried to shift treatment away from hospitals and closer to where people live, such as medical centres and home-based and virtual care.
People in the final 250 days of life are four to five times more likely to end up in ED, and if admitted spend twice as long in hospital.
A big push to reduce that burden is through something called an advance care plan (ACP) — essentially a personal roadmap setting down the sort and amount of medical care we want to get when we are incapable of making the decision for ourselves.
New Plymouth retiree Jennie Moore, 80, put hers in place about two years ago.
Her nursing career made her realise the importance of having a say. Completing the plan took “months of thinking”.
“It’s easy to decide whether you want to be buried or cremated. Everything else is much less clear — there are all sorts of ifs and buts.”
She sought the fine line between getting worthwhile treatment, but not anything that would probably keep her alive but with a poor quality of life.
“There’s this huge perception in the public that if you get to the hospital they’ll fix you up and you’ll be fine. It’s so unrealistic. And everybody knows it, but we stick to that interpretation and call it hope.
“But that’s not hope, it’s ridiculousness.” Her ACP instructions are clear — no interventions that “interrupt or change the natural process of dying”.
In the event of something like a major stroke she doesn’t want an ambulance called, lest she end up in hospital and die there after “a propped-up life”.
Moore says her four children didn’t find it easy to read the document, but accept her wishes.
She sees the ACP has a guide to help people — health workers but mostly family — make tough decisions, if and when they come.
“Funeral celebrants will tell you they
frequently don’t spend much time arranging the funeral, but rather mediating between family members — they all know exactly what their mother wanted, but it’s always different.
”[Knowing] would ease the grief. It puts decisions in an easier, better place. I’m grateful I’ve written it.”
Waikato DHB funds GPs to start advance care plans with patients.
“It’s awful to make life or death decisions in ED for older people,” said Matthew Parsons, Professor in Gerontology across Waikato DHB and the University of Waikato, and a leader of the “last 1000 days” work.
“We want to enable older people and their families to make decisions quietly, in a sufficient amount of time, and with a health professional who knows them best.”
Parsons said services would need to move out of hospitals — places where people like Moore don’t want to end up — for ACP to reach its potential.
Waikato has started hiring more managers to work with a person and their family to arrange better home care, delivered multiple times a day if necessary, and by carers with better training. That significantly cuts time spent in hospital, recent research has found.
There are other bright spots. Canterbury DHB has ensured all five South Island DHBs have an electronic system to record ACPs, and since June last year increased the number of plans on its own system by 1600 to nearly 4000.
That has helped reduce the number of over-75s dying in hospital from a third in 2011 to 26 per cent last year.
Other DHBs aren’t as far along, says Leigh Manson, who works at the Health Quality & Safety Commission and heads efforts to help change that.
It’s not known how many Kiwis have a plan in place, and a more uniform storage and retrieval system is wanted within five years. Advance care planning is also taking off in North America, Europe and Asia, and overseas research shows those with a plan generally opt for less heavy-duty treatments.
“The drive is never to reduce treatment,” Manson says.
“[But] people don’t necessarily want to be lying in hospital having aggressive treatment when their days are numbered.”
HOW DO you tell somebody they’re likely nearing death? Often even doctors put that in the “too hard” basket.
Mia Carroll, a professional teaching fellow at the University of Auckland’s nursing school, teaches postgraduate students how to break the news to people with long-term conditions.
“You are trying to say, ‘This is my understanding of where things are at, and we hope it’s not the case, but we are concerned this is as well as it gets. And if that’s true, what are your priorities?”’ she said.
“Hopefully it’s done with huge empathy and compassion. It’s confronting people with death . . . but most people of my era — I’m 65 — would insist on having this information.
“I know it sounds odd, but a lot of people living with life-limiting, long-term conditions don’t know they are dying.
“And that’s because our professions are hesitant to tell them . . . some of my colleagues are not so brave as to have the conversations.”
Carroll also helps members of the public to complete advance care plans. She’s filed her own, and talked to her 32-year-old daughter about doing one.
“I have seen the pain of families agonising about whether they are doing the right thing by the people they love . . . they try to scramble and think, ‘Well, he would have wanted this’.
“But if we have never had the conversations, we simply don’t know.”
In her experience those conversations often start with a broad statement like, “I don’t want to be a vegetable”. A skilled health worker could tease out what that would mean in different situations, and the rough likelihood of success of different treatments.
The ACP form advises people to complete as much as they want, and change it at any time (if euthanasia legislation passes then Carroll, a supporter, may update hers).
Tick-box options are listed under “When I am dying, the following are important to me”, including “Take out tubes and lines that aren’t adding to my comfort”.
Under “Other”, Carroll has written: “Don’t force food or drink, manage pain and fear . . . Don’t let me drown, have had respiratory arrest and do not want to drown”.
That plea goes back 50 years, when as a teenager recovering from surgery she nearly died after a breathing tube blocked.
“It’s still very vivid. It was terrifying. I ended up being resuscitated. The impact of that has meant I do have a bigger fear of not being able to get my breath or drowning than other people might.”
The ACP document advises people to detail specific treatment preferences with the help of a doctor or nurse.
Carroll’s response is informed by both her professional experience, and having nursed dying family members, including her father.
“I would not want ventilation/intubation/ artificial feeding if dying or living with terminal illness or have some catastrophic clinical event such as massive stroke, dissecting aneurysm, or dementia/severe cognitive impairment,” she has written.
“I would only want drugs that maximise my comfort and ability to participate meaningfully with my whanau . . . not to prolong my life.”
Other requests aren’t medical. Carroll wants to die at home, and if that can’t happen “make home where I am”.
“Get me out if possible,” she’s asked. “Let me see the night stars.”
There’s this huge perception in the public that if you get to the hospital they’ll fix you up and you’ll be fine. It’s so unrealistic. And everybody knows it, but we stick to that interpretation and call it hope. But that’s not hope, it’s ridiculousness.
Jennie Moore