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<p>Photo Courtesy of Margaret Rice</p>

Photo Courtesy of Margaret Rice

The author's mother Jeanette Rice (in glasses) in the Land Army.

Live and Let Die

We’re living longer! But our longer lives mean that more of us will develop dementia and other diseases of old age. If there’s always another possible medical miracle, when do we say it’s OK to let nature take its ultimate course?

Is death optional?

My mother's lung cancer, unexpected because she wasn't a smoker, caused her a difficult and painful death after years of mild dementia.

She didn't believe in euthanasia and died recently in a Sydney nursing home, aged 86. In the end her dementia wasn't her biggest problem, as she was no longer aware enough to care about it. Rather it was the so-called co-morbidities which crippled her and left her in chronic pain, giving my mother, Nette, a miserable last five years of life and leaving me doubting the wisdom of the quadruple bypass she'd had 10 years before.

Her death contrasted sharply with that of a family friend who died a few years before Mum had her heart surgery. Nin made a hot chocolate for herself and her student boarder before she went to bed one night, aged 84, and didn't wake up. She died of a massive heart attack that took her so quickly, her doctors said she wouldn't have known what happened.

Mum seemed to have drawn the short straw. Nin seemed to be the lucky one.

<p>Photo Courtesy of Margaret Rice</p>

Photo Courtesy of Margaret Rice

Jeanette Rice with her first child.

In Australia we've pushed death back. Of those Australians who make it to 65, the men can expect to live to 84 and the women to 87. The numbers of those who live beyond these ages are set to increase dramatically as the century progresses, reversing us from a country of young to a country of old people.

But many of these survivors will struggle with a range of the uglier diseases of old age, which will leave either them or their families scratching their heads about what they really gained with all those extra years of living.

Australian Medical Association president Dr Steve Hambleton says most old people would rather have a few extra years of good eyesight and continued agility than too many extra years. Yet we don't yet have a society that encourages elderly people and their families to examine these issues realistically.

"In fact, 'It's OK to opt out,' is not something people hear very often," Dr Hambleton says.

Instead, they're left with the impression that because certain interventions can be done they must have them.

"It's something people need to know, that they have permission to say no," he says.

Heart interventions are the best example of the dilemma. Today many people in their late 60s and 70s are likely to be given percutaneous procedures to clear blockages in their coronary arteries to gain at least an extra 10 years. These are the modern, less invasive equivalent of the coronary artery surgery my mother and her peers were having 10 years ago.

The latest data show that in the period 2009-2010 in Australia, a staggering 23,600 of these percutaneous procedures were performed and a further 5,400 of the more old-fashioned coronary artery grafts.

Percutaneous procedures, along with a 67 per cent drop in the smoking rate since the 1970s, have caused Australia's deaths from cardiac, or heart, disease to drop from 20 per cent in 2000 down to 16 per cent in 2009. You'd think that is a significant and positive achievement for modern medicine. But some don't agree.

The drop in cardiac disease has unmasked other complex and confronting illnesses, most conspicuous amongst them dementia and stroke.

“We do need information about what’s happening to people in nursing homes and what’s happening five, 10, 15, 20 years down the track. I mean, if I was 78 and facing cardiac surgery I would at least like to be afforded the dignity of being given the information.”

Mum's was a typical suburban Sydney nursing home, with 63 residents. It housed a number of elderly residents, over the age of 80, suffering from dementia. They would sit with Mum in the common room, passive and immobile, some gently rocking in their restraining devices while staring vacantly ahead. Apart from this group, there were another 25 in a separate, locked dementia wing.

There were also those patients who were bed-ridden, often because of their vascular disease, such as the 90-year-old woman who lay in a bed just in view of the nurses' station, in a vegetative state, the consequence of a stroke more than eight years before.

The fundamental realities about life for many aged Australians today, according to a number of medical experts and health economists who spoke to The Global Mail, are not always pretty.

The experts say there are not enough medical data provided so that the elderly and their families can assess realistically, and on a case by case basis, the other diseases which may well catch up with them after they've had their "life-saving" cardiac intervention.

The trouble is, little is understood about the right to say "no" to intervention, and it becomes confused with a discussion about euthanasia, which is something else again: the right to deliberately intervene to cut life short.

And it is still difficult to predict who will languish after cardiac interventions. Personalised genetic mapping to predict the major diseases that could emerge after heart surgery might solve this problem, but such mapping is only just being developed - and when it becomes available, for many years to come only a tiny minority will be able to afford it.

West Australian cardiologist and general physician David Playford believes we need more geriatricians working with cardiologists to help make better judgments about elderly candidates for cardiac interventions.

<p>Photo Courtesy of Margaret Rice</p>

Photo Courtesy of Margaret Rice

Jeanette Rice on the day of her engagement.

Health economist professor Stephen Leeder, director of the Menzies Centre for Health Policy at Sydney University, believes it's not appropriate for cardiac surgeons to be expected to carry the full burden of ensuring individuals are informed about these complex issues.

"But it certainly is somebody's job, and the information is of incredible importance to the consumer," Leeder says.

"At the moment the data is not there, at least in Australia, because we don't have linked-up medical records that would enable us to ask a perfectly simple question, which is: out of 300 males aged 78 who've had this procedure over the past four or five years, what's the outcome? We don't have that information at our fingertips, which is just absurd," he says.

He hopes this will change when new, federal government-funded, personally controlled, electronic records become commonplace; at that point large volumes of information about large populations can be anonymously collected for exactly this type of decision-making. Such a records system is being trialled now at a range of hospitals throughout Australia.

In the past, civil libertarians have been concerned over the privacy of such records because massive amounts of sensitive information about individuals, including psychiatric details, can be passed quickly from one health professional to another using them. But Leeder says concerns about this are being resolved.

"We do need information about what's happening to people in nursing homes and what's happening five, 10, 15, 20 years down the track. I mean, if I was 78 and facing cardiac surgery I would at least like to be afforded the dignity of being given the information and having it on the table so I can make the call," he says.

It is possible to do, he says. Large health maintenance organisations (HMOs) in North America do it very well, he notes, citing Kaiser Permanente as an example. "It's a health maintenance organisation with about six million enrolees, which is fully computerised. And the consumer, the patient, can gain access to information about large numbers of patients at a time," Leeder says.

“The medical profession does not seem to want to give leadership on developing guidelines that might help families and patients at the end of life.”

"For example, if people are going to consider having bypass surgery, they can look at the experience of 500 people which is pooled and see what the average life expectancy is and whether, for example, 15 per cent of those who've had the operation will be dead within a year."

Dr Hambleton agrees there is not enough data being collected for older Australian consumers to make effective decisions. "Australians should be asking, Is every procedure possible a good decision, in terms of ultimate outcome?" he says. "When does natural dying start and when does medical intervention start? We have to really think about these things and it's a really difficult decision for the whole of society."

Australians need to write more of what are called advance health-care directives, he suggests. These need to give clear instructions; they become more important as people age, he says. These directives are a form of living will, recognised by health-care professionals. They can be written before an elderly person enters hospital.

Managed by area-health services, these directives allow people to request, for example, that no treatment be started which might obstruct natural dying, or that no surgical operation be performed unless for palliative purposes. But the current approach is fragmented, with different forms and approaches in each state.

When evaluating a medical procedure's worth, the question of cost can come into play, even if only to consider using price as a mechanism to lock people out of expensive surgery. It would be easy, although politically risky, for governments to reduce the rebates for percutaneous surgery as a way of inhibiting its use. It's a strategy which would impact heavily on the elderly, yet a strategy some academics in America have promoted.

The idea makes Public Health Association of Australiachief executive Michael Moore bristle. He warns it's not viable to use price to curb this surgery in Australia. "The association's position would be ensuring interventions to improve cardiovascular health are available right across the community, not just for privileged groups," Moore says. "Australia is based on equity and a fair go."

Institute of Health Economics and Technology Assessment director Dr Paul Gross says the question of when to medically intervene in elderly people's lives, and when not to, should be discussed a lot more in Australia. "We also need to ask what the medical profession is doing about clearing up uncertainty around the effectiveness of certain surgeries. This problem would be solved by building better information on the evidence-based guidelines developed by clinicians themselves through their Royal Colleges," Gross says.

<p>Photo Courtesy of Margaret Rice</p>

Photo Courtesy of Margaret Rice

Jeanette worked as a midwife.

"The medical profession does not seem to want to give leadership on developing guidelines that might help families and patients at the end of life, and the reasons are simple," he says. Some people will want heroic interventions and surgeries. There always will be some people who respond to cures that most other people wouldn't. Even these small success rates undermine guidelines, Gross says.

Hence we have 97-year-old patients who are having bypass surgery "with case mortality rates of between two and three per cent, which is amazing," he says. "If you let the economic perspective decide what happens to individuals, we are a society without a soul.

"But resources are limited, and ultimately somebody has to make the decision about whether I live or die, so I want the best possible information in place for my family, for me and for my doctors," he says. "We need to educate families about dying and death."

Alzheimer's Australia is squaring up to lobby for funds for dementia research as the problem gets bigger this century. Alzheimer's Australia's chief executive Glenn Rees predicts a dramatic increase in dementia numbers in the next 10 years and he believes broader issues about quality of life in extreme old age need to be addressed by government.

"We're being successful in giving people longer lives," Rees says. "And because there are more people living longer, dementia is becoming more visible as a serious health issue. In the next 10 years the numbers of people with dementia will increase by 50 per cent, to about 350,000, or over. So there's a big explosion in numbers. By 2020, 75,000 baby boomers will have dementia, so it's today's issue as well as tomorrow's problem."

"For the last 50 years health policy has focussed on saving lives and gaining extra years of life," he says. "But the issue now is how to ensure those extra years of life are quality years."

In a nursing home across town from my mother's, 95-year-old Betty talked about these issues. She said she is ready to die.

I asked her if she suddenly developed a heart condition that could be treated with surgery, would she take it?

"Not if it gave me another 10 years," she said.

Then she paused for a moment.

"But if there was a choice between that and dying tomorrow, I'd take life," she said.

14 comments on this story
by John

Bit of a worry, this item. The general thrust is that old people (like me) should be told of the chances of getting some other debilitating condition if I have "that heart operation I need and which will allow me to live another 10 years". Her worry is that by having the heart operation I might be exposing myself to dementia or a stroke or whatever, and so would have been better off if I had refused the heart operation and allowed it to kill me.
I'm okay about that info being available as long as they also tell people that having a stroke is not necessarily the end of life and that many people who have had strokes, or whatever, resulting in disability go on to lead great lives, most likely with support from personal care workers.

February 15, 2012 @ 4:18pm
by Fran

Yes, we need to be better informed. Yes, we need to make valued judgments about our health and our future. Would I extend my life if an operation or treatment could keep me alive another 10 years? No! I'm 67, had a full life and I'm satisfied. Each of us has our own agenda for wanting to live or welcoming death. The information needs to be there for the actuation of our decisions to be decidedly right ones.

February 15, 2012 @ 8:30pm
by Julie

Interesting that John and I read the same article, and yet got totally different main messages from it. Similar to the way in which two elderly people can have heart surgery, and get totally different life prognoses from it.

i valued this article. It hooks in so well to where I am at this moment. This week I put my 66 year old brother into a locked dementia 'facility'. He had a stroke with absolutely no physical paralysis, but which destroyed the left half of is brain, leaving profoundly mentally impaired. He cannot read. He cannot write.He cannot watch television. He cannot remember to take his medication. He cannot remember to feed himself. He was in another facility but 'absconded'. However, when I asked him what he wanted me to do if/when he was a vegetable lying on a bed, he said that he was a Catholic. It is up to me to translate this, as he is not able to flesh it out.

However, 'being Catholic', to me, means that he wants the sanctity of human life to be respected. It does not mean that HIS life has to be preserved at all costs. That every intervention is to be grasped. There is a time when respect is shown by letting nature take its course. A natural death can be more respectful than a medically-extended life.

February 16, 2012 @ 8:00am
by Tom

Fantastic article, very thought provoking. This is definitely a discussion that we as a society need to have. More information can only help inform decisions and as long as these decision are left to the patients and their family then really we cant go wrong.

February 16, 2012 @ 11:44am
by Judith

Let's be mature about this and acknowledge that we don't get out of life! One can only hope whatever the exit visa is - it's a swift one. Medical professionals must ask people if they want to 'go on' or if they would prefer to be made comfortable. Palliative care should be discussed by everyone. Thank you for a good discussion.

February 16, 2012 @ 12:20pm
by Evan

Last year my father died at the excellent age of 93 years and 8 months. It was not his age that "did him in" at the end but a completely unexpected syndrome for which there is no treatment available other than one that works for younger people. My father and his family were told that he would not survive the treatment and as a result our Dad said just palliative treatment, nothing else.

As he lay dying he was pleased to have his family with him, had no fear whatsoever, and was cracking jokes to make us feel better. Not long before the end he told us how proud he was of us all, to look after our mother, and not to be sad for him because he'd had "...a good innings and I am satisfied with it."

My father had a long mortality and a short morbidity, something that I hope one day to achieve myself and it is, I am certain, the best way to see the end one's life. There is nothing whatsoever to fear.

February 16, 2012 @ 12:39pm
by Natalie

The dilemma remains of how to make individual decisions from a generalised pool of information. 3 months before she died, I had my 87 y/o mother admitted to a top private Sydney hospital in order to try to better manage her pain from terminal cancer. She was discharged two days later with the words "there's nothing wrong with her". Only late stage dementia and terminal cancer! The modern teaching hospital is a specialist arena and has little or no understanding of dementias, still less is equipped to house patients with the condition.

At almost exactly the same time, my 85 y/o mother in law had open heart surgery. The surgeon did everything except refuse to offer it, because ethics required him to do so. He advised against it in the strongest possible terms. She elected to have the surgery. So far this has cost the taxpayer somewhere in the region of half a million dollars.

As a society, we must begin to accept that having a choice is not necessarily a good thing.

February 16, 2012 @ 12:44pm
by Geoff

Good article. We need to talk about this an emergency physician I'm confronted with people dying all the time and I need to make the decision whether it's appropriate or not...fortunately (but oh so slowly) people are starting to talk about their expectations and how doctors like myself should respond to what could be their final illness. I feel that I have a responsibility, both morally and (sorry to be brutal) financially, to not offer futile care and to have the courage and wisdom to diagnose dying. With the support of patients, their families and broader society I'd like to think I'm getting there.

February 16, 2012 @ 1:10pm
by Scott

Just as an understanding of basic hygiene prolonged the life of our ancestors only to expose them to heart disease, cancers and dementia, those maladies too will one day be overcome (and likely expose something that ails the 140yr old human body).

We just need to learn to manage death (and pain and grieving) as well as we postpone it.

February 17, 2012 @ 11:02am
by susan

My elderly father's increasingly horrendous experience of living with escalating dementia and Parkinson's, meant that when he simply stopped eating and drinking, took to bed, then within 24 hours died from pneumonia, it was a kindly thing indeed.

He experience wonderful care in an excellent nursing home for two years. That could not ameliorate his situation, nor how his increasing violence and instability affected other residents and the staff. Sadly, his explicit advanced directive wishes could not be brought into play because his body was relatively healthy throughout. I wonder if his decades long support of euthanasia represented some unconscious insight into his likely future.

We need many conversations about the quality of life and the quality of death, about how equally precious and deserving of respect these are. So many individuals, and their families, are shamed as they seek information on choosing a natural death rather than endless surgical or pharmaceutical interventions. A gentle death, when we are ready, is to my mind a basic human right.

February 17, 2012 @ 1:28pm
by Lee

The fear of dying vs the fear of a lawsuit. My husband has an incurable degenerative brain disorder, Huntington's Disease. If something happened and there was a question about life-saving medical intervention for him, I sincerely hope the treating doctor would have the chutzpah to recognise that there would be little value, moral or financial, in that intervention.

February 18, 2012 @ 6:12pm
Show previous 11 comments
by KD

Just wanted to leave a little love note for TGM... so thrilled with the arrival of a truly apolitical, independent outlet looking at all the right stuff!

My father (small business owner, farmer, white 'Rhodesian' immigrant, ex-military) and I (his homo-lovin', environmentally-concerned, inner-city dwelling Gen-Y daughter) are two of your biggest fans. We bond over emails about the latest excellent articles, covering topics from ethanol to power bills to Mike Seccombe's stuff pointing out the reality of the Australian economy. How's that for reaching and connecting with a diverse audience!?

Keep it up - you are being greatly appreciated, far and wide.

February 20, 2012 @ 12:18pm
by accidie

Julie, Catholic bioethics allows for the choice of no intervention - known in the trade as letting nature take its course. It also allows for the 'doctrine of double effect' where a terminally ill person can be given medication which it is known will have the effect of shortening life, if the treatment relieves suffering. It's very common for terminal cancer patients to be 'double-effected to death'. Catholic dogma in this area can be wonderfully flexible, as I learned too late - after my mother had pointless, AWFUL interventions for pancreatic cancer.
That spurred me on to do a PhD on the subject. To my surprise, I came around to thinking that my whole-hearted support of legalised voluntary euthanasia was mistaken.
Not because I think life is sacrosanct, or precious no matter what the quality, but because any legislation it's possible to craft for VE requires informed consent and a high level of scrutiny. The scrutiny will make doctors understandably nervous about doing the right thing by patients in a state in which they can't consent.
Patients who CAN consent can have coded conversations with their doctor. It happens a lot.
I wish you well in an appalling situation, and hope this has helped a tiny bit. Even Catholics are allowed to refuse treatment. The Pope says so.

March 10, 2012 @ 9:20pm
by laura

I wonder if we should instead have a different focus? Instead of succumbing to the inevitability of diseases of old age should we be researching how to treat and prevent them.

Also chronic pain is not necessarily a part of a chronic illness. Palliative care has made great advances over the past two decades. The trouble for people is gaining access to this incredible service.

I guess my main worry is that the author argues that a large percentage of people who have cardiac intervention go on to die long slow undignified deaths. But not all. Would you really choose to avoid live saving surgery on an 85% chance it would prevent your or your mother from this outcome? How would it weigh on you if you had chosen not to have it and they died six months later in all but good health from a preventable event? I worry that I would always be wondering if there was not another ten good years that had been lost.

Yes a heart attack is a fast way to die. But long illnesses allow people to come to terms with their lives. It may be hard for families but my work I cancer medicine has shown me that with good palliative care a good death can come from a long illness. A death that allows the person and their families to process much of the coming grief together and make peace with their passing.

We need more and better aged care facilities. We need better care plans for those with dementia. We need a cultural shift towards respect and investment in the elderly.

Yes we would rather have a few extra good years than many poor ones but we cant predict good or bad years to come. And potentially medical research can lead to better ageing if we make it a social priority. If we consider it inevitable and inconvenient then the research will never happen.

“Natural dying” is an interesting term. I assume like the god of the gaps this is when the edge of medical innovation and treatment is breached. Once more technologies are developed this line is pushed further back. therefore 'natural dying' is based on ability to access medical care.

No not every procedure is good. If someone is already sick and infirm then risky surgery is probably not advantageous. Especially considering the increasing likely hood of complications such as delirium. But this is not the same as denying an otherwise healthy person access to a procedure because statistically their cohort does not respond to it.

Pricing lock out is an abhorrent way of determining who gets access to health care. Health like housing, are a natural human right not a commodity. The idea of following american policy in health care chills me.

October 13, 2012 @ 8:10am
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