by Amal Awad
He believes people assume too much about human resilience. ‘I think the thing that a lot of people misunderstand is when you are disabled you can still have quite a good life. If you’ve talked to older people and you say, “Would you rather be disabled or dead?” the majority say, “I’d rather be dead; I don’t want to be disabled. I don’t want to have someone have to wipe my bottom in the toilet.” If you talk to a disabled old person and say, “Would you rather stay as you are or die?” the majority of them said, “Oh, I’d rather stay as I am.”’
However, he makes a significant point about personal choice. ‘Now it gets to a stage where … The burden individually is such that they say to me, “I’m ready to go. I’ve had a good life but I’m ready to go.” And they often die unexpectedly because I think the psyche and the soma are connected.’
‘I believe this, too,’ I tell him.
‘Yeah, yeah, I see it, I see it. Once or twice a year someone tells me on a ward round, “I’m ready to go, doctor, I’ve had enough.” And the next ward round they’re not there. It’s quite interesting.’
‘We’re all about fixing the problem’
Dr Adam Rehak is a doctor and anaesthetist in Sydney. In addition, he teaches in a simulation centre, which involves instructing on crisis management. He estimates that ninety per cent of his patients are over the age of fifty. ‘They need more surgery than anyone else. But certainly in the environment I’m in, which is surgery, we’re all about fixing the immediate problem. This, in fact, reflects the broader medical paradigm, where we’ve learned to identify ill-health and then fix the problem, we’ve learned to keep people alive, we’ve learned to reverse pain, suffering, whatever else. And most of us really don’t deal well when we’re presented with a patient where you can’t fix the problem or you can’t reverse the suffering, or you can’t make things better.’
It’s particularly hard in surgery and anesthesia, where there’s a factory-line procession of patients to deal with, even though most are really in need of better continuity of care. ‘That’s why I have nothing but the utmost respect for people who go into geriatrics and palliative care, and those areas which are so necessary with our ageing population. They don’t just deal in fixing the problem, they deal with getting to know who the person is and doing what’s best for them. Which is not really what we do in acute medicine: it is, as I’ve said, more about seeing a problem and fixing it. And the fact that there’s a person attached to that problem is neither here nor there.’
With older patients, chronically ill patients, and those with terminal issues, it’s not the conditions that doctors need to deal with, says Dr Rehak. ‘It’s about what management plans are going to give them the best quality of life. And really, is that just about fixing a condition?
‘How are we doing on the job? It’s such a complex issue. I mean, on one very basic level we’re doing a terrible job at it, because what is the single biggest cause of suffering for many of our ageing population? It is lifestyle diseases such as obesity, diabetes, smoking-related disorders and problems relating to immobility, which people have acquired throughout a life where not enough has been done to prevent them.’
Dr Rehak poses a hypothetical: if we were to take away 50 per cent of the funding that goes into solving acute problems in the hospital, accepting that it would lead to many deaths in the next two years, but with all the money going into primary health care, in turn that would lead to a massive improvement in death and suffering in twenty years’ time. ‘In retrospect it would end up looking like the best-value diversion of funds ever, but no four-year-term politician is ever going to be able to say that, nor are they ever going to say, “Okay, we’ll keep paying for all the acute care, and we’re going to double, or triple, or quadruple primary health-care costs, because we know in the long term it will lead to massive savings in health expenditure and an improvement in health outcomes.” No politician will take that initial hit for the long-term gain. They’re unelectable if they do that.’
We’re locked in. There are hugely escalating healthcare costs, related in part to growing older, and growing older more unhealthily. ‘A proportion of the population are very unhealthy and previously would never have survived this long. So in terms of prevention and maintaining health, we’re doing very badly. Are we doing any better in caring for those people who are already unhealthy, unwell and suffering? I suspect not, because their numbers are growing so quickly that there’s just not the money, or the appeal, to get the necessary doctors involved in palliative care, geriatrics, chronic pain management and other such areas.’
Meanwhile, Dr Naganathan says that it’s true that it’s costly to treat older people, but technology, and newer, expensive drugs also contribute to the high cost of the health system, and these are usually spent on younger people.
‘There is no evidence that an eighty-year-old now is unhealthier than an eighty-year-old from times past. In fact, as a group they are probably healthier. The issue is that since there are more older people, if a proportion are unhealthy it can have an impact on the health system.’
Even adopting the necessary public health measures won’t stop the costs. ‘That is, the same things happen to people at a later age. You can’t have it both ways. A good public health system means that people live longer and therefore we have the luxury of a lot of older people in our hospital,’ says Dr Naganathan. ‘Many poor countries would like to be in that position.’
Dr Rehak says, ‘It’s not just doctors. It’s nurses, and more than that it’s infrastructure. And if you look at the systems that have made a difference in chronic pain or in back pain, or in any of these complex, chronic processes, it’s never just the way a doctor works that makes it better. It’s when a doctor and a number of other services, including psychologists and occupational therapists, work together to develop complex solutions for complex patients. Then you start to see differences.’
A call for coordination. ‘There’s also a big disconnect between delivery of family healthcare in the community and the care delivered in the ivory towers of large tertiary-level care hospitals where much of the acute care is delivered. There’s not enough coordination and communication between the people who are supposed to be healthcare coordinators, the GPs, and all the other services.’
‘That’s come up elsewhere,’ I tell Dr Rehak. A lot of medical professionals I’ve spoken to have said they want greater cooperation and communication. Dr Naganathan is one of them. He believes the problem that needs to be challenged now is ‘too much medicine’. He says that he’s had patients for whom, in order to coordinate care, he’s had to cc eight specialists in correspondence. ‘Sometimes I’ll even say on the bottom of that letter, “I don’t think there’s any value in me being the ninth specialist seeing this patient.”’
The renal nurse I spoke to, Candace, worries that people get hooked into the hospital system. ‘We wait until people get sick, and they’re treated … [Then] it’s really hard to get out.’
She has undertaken studies in primary healthcare based on preventative care, and based on expanding the health-care provided in the community, to avoid people coming to hospital. ‘I think that’s probably the biggest problem with our healthcare system – is that there’s not enough focus on prevention,’ she says.
But there have been improvements: blanket guidelines about a healthy weight and exercising, around lifestyle choices –to stave off Type-2 diabetes risk factors and the like. Heart disease kills more women than breast cancer, a nugget of information I recall from my time as a health writer in the pharmacy industry.
Elderly people ‘cruise along until they get sick, and that’s just the way it’s always been,’ says Candace. ‘So I think the cultural [lifestyle] thing is quite hard to change.’
‘You’ve got to be a special person to do geriatrics’
Sophie* is a registered nurse in her late thirties and she’s currently doing the rounds in the geriatric ward of a Sydney hospital. It’s a leap from her
previous job in an office, dealing with numbers. A visit to her mother in hospital years ago left her in awe of nurses’ work. It looked relatively exciting, and following some soul searching and ‘find your purpose’ inner work, Sophie was led to the profession.
‘When I did the quiz, my strengths were communication, harmony, intellect, empathy.’ Several motivational quotes later (‘Just do it’, ‘Life is too short’, etc.), Sophie shifted her career trajectory. Recently she was assigned to a geriatric ward, one of two rotations all new graduates have to undertake when they’re fresh out of university.
‘My first one was a busy surgical ward. And now I’m in a sub-acute … meaning they’re not dying. They’ve got the all-clear from surgery, but they still need a little bit of support, and mine is sub-acute rehabilitation [specifically geriatric].’
This involves working with physiotherapists to improve patients’ mobility. ‘So, getting them ready to get back into society, because that’s what they want at the end of the day. They want them to be able to go back to the lives they had before, say, the fall they had. And a majority of our patients have had a fall on concrete. You know, they’ve been lying there; no one’s seen them and … yeah, it’s quite sad.’
Sophie admits that she wasn’t keen on geriatrics because of her experience as a student. ‘I knew it was tough work,’ she explains. ‘Tough work in the sense that a lot of them aren’t really communicating as much as someone who’s, say, in their forties or fifties. They’re often quite miserable, which is fair enough … they’ve just broken their hip and they’ve been stuck in a hospital.
‘When you’re in the surgical ward and dealing with forty- or fifty-year-old women, they get it … you ask them a question and get a simple answer. I think you’ve got to be a special person to do geriatrics.’
Geriatric patients require more care, and they’re slow, even in how they speak. There’s an added challenge if the patient is overweight. It’s also laborious, Sophie says. ‘Too laborious … these people have zero strength and I am expected – of course, with the assistance of someone else – to help [them] mobilise.’
She points out that geriatric patients are treated like babies. ‘They’re in nappies. They have zero control over their bowels. And these people, they contributed so much to society and now they’re just so dependent on that care.’
I ask her about the reported predisposition of some medical professionals to talk down to elderly patients. In Dear Life, a Quarterly Essay by Karen Hitchcock, she observes that speaking of patients in limited ways – usually ‘cute’ or ‘difficult’ – is not appropriate.
‘I hear that all the time and it annoys me as well,’ says Sophie. ‘I think it’s really condescending.’ During her studies, they were advised not to use the terms ‘darling’ or ‘love’. They were told to use the patients’ names. ‘Once you get talking to them, they were engineers back in their day, they were mayors. They really contributed so much to society and now, you’re right, we do hear them being referred to as “cute”.’
‘Do you feel that sometimes that’s all they want, to share their experiences? Or just to speak to someone?’
‘Most definitely they do. Unfortunately, though, nurses are so busy that we can’t. We cannot spend any time with them. In the public health system, there are a lot of four-bedded rooms and these four-bedded rooms, as much as you’d think, oh, I want my own private room, for the elderly, my personal opinion is [the four-bedded rooms are] great because [the elderly] see these other patients, they see the family of other patients.’
Sophie cites the example of patients who are relegated to a single room because they might be infectious. Such patients will call out in distress, desperate for some attention, some company. Sophie finds it difficult not to be able to support these patients. It was partly what led her into the profession, after all. ‘Some of these stories are bloody amazing, what they’ve been through. Someone just the other day was telling me about how she went through that whole Royal Commission and the whole sexual abuse scandal back in the day. And she just wanted to talk to someone.’
But time is the issue. ‘In the acute hospital setting … [the ratio is] supposed to be four patients to one nurse. But, in the sub-acute aged care of the nursing homes, there’s no quotas as far as I’m aware. So you’ve got one nurse to twenty patients, forty patients – I’m not sure – and that’s where the problems start to occur. Things such as neglect, elder abuse, all of that sort of stuff.’
A major issue for some older patients is that if they don’t have visitors to assist them, they won’t eat properly. Sophie says that although the hospital ratios aren’t too bad, meals will often go cold before a nurse can reach the patient to feed them. And hospital protocol doesn’t allow them to warm food up in a microwave because of the risk of bacteria and germs. ‘When there’s family, we are so grateful. Some people have family who stay the whole day; they’ll shower them for us, and we’re just so happy that they’re there. Then you have other members of families screaming at you, “Why didn’t you feed them before the food went cold?”’
Feeding a patient is part of the job if a patient is marked as someone who requires ‘full care’. ‘That’s the term we use, full care. And it’s just a matter of getting to it. We definitely have to help them set up, open the packages. Because a lot of the packages, they’re just too weak to do it. So we know which ones. We’d never just leave them there.’
Sophie feels patients are generally treated well, partly because there are laws in place to ensure they are. ‘If you get a pressure area sore, which is an avoidable sore – so somebody’s sacrum, because they’ve been sitting in bed too long – there’s a $100,000 fine. I don’t know if that’s the exact figure. So it’s taken seriously, so that’s one good thing.’
Family and friends paying a visit delivers another benefit for the elderly. ‘Their faces just light up because they’re bored. And I think, if anything, I mean obviously these people are really sick, they’re not mobile. But the biggest problem is they’re so bored in this hospital. They’re not interested in TV. Usually their eyesight’s too bad so they can’t read anymore. So they’re just sitting there, and it’s especially things like … someone brings in a little baby into the hospital. Their faces, oh my god. They just light up.’
On the other side is the patient who has given up. ‘And I get it, I get why they don’t care. There’s a man at the moment, he’s got some sort of emphysema and he’s in pain. He’s wheezing the whole time. He can’t catch his breath. He keeps saying, “I just want to die.” And I don’t blame him. Like, he’s in pain, there’s nothing really more they can do.’
‘Is he being artificially kept alive?’
‘No, he’s not that bad yet … They haven’t referred to him as palliative. He’s just on his way out. He’s not going to get any better. There’s nothing you can do for him.’
‘What do you do when a patient keeps saying that? What are you meant to say? What are you allowed to say? Have you been trained in what to say?’ I ask.
‘Yeah. The way we’re trained is that you don’t have to say much at all. You just have to listen, and I’m a big believer in that. Most of these people want to talk and they want to hear – often just holding someone’s hand, which unfortunately we don’t have a lot of time to do. They like that touch.’
Such moments usually occur when it’s just the patient at the hospital. ‘I wouldn’t probably touch their hand when their family is around, just because they’ve already got that support. It’s always welcome. These are these European old men, who would’ve come from the school of hard knocks.’
They need the gesture of kindness.
‘If I put my hand on their hand they will not let go. Who knows what they’re imagining? Maybe in their head they think I’m their wife, but even if they do, for that couple of minutes or seconds I’ve given a bit of happiness.
‘You can feel their calm. You can feel their body and they’re calm.’ And, adds Sop
hie, ‘Some of them are scared. Some of them have accepted and they’re like, “I want to die” … Some of them you can just tell that the family is wanting them to die.’
‘The families are waiting for them to die?’
‘Yeah, because they are so grumpy and they’re burdens on them. Not burdens – that’s the wrong word. But you can just tell. They’re fed up.’
‘They’re over it.’
‘Yeah.’
Friday
Every Friday my father attends the obligatory midday prayer at the mosque. This leaves me and Mum with forty-five minutes alone, and we might sit on a bench in a tiny park, or we’ll go for a walk. Sometimes it’s a short drive to find coffee or a drink. We talk. This is usually a time for sharing, or unloading, depending on the mood of the day. I would say it’s mutual. We both have a lot to say. I’m just there, trying to be present though. To really be there.
An opportunity to reflect, it’s also increasingly a time for passing on wisdom rather than grief. One Friday I ask my mother what she expected of Australia, as a young woman, newly married.
‘It was exciting,’ she says. ‘All this land, and sheep and people.’
Always the sheep. Or kangaroos.
My parents knew each other through family connections but were largely strangers to each other. Piecing together their recollections, a handsome young man in his twenties, recently arrived from Australia via Palestine, was in search of a wife. My mother, younger by nine years, beautiful and hopeful, accepted the request for her hand in marriage.
‘My father asked me and I was silent,’ Mum explains. ‘This meant I accepted him.’
