As I reflect on the ongoing complaints at federal and state level about our ailing health system, widespread community concerns and a medical culture which is still often hospital- and doctor- centric, I wonder how we will be able to sort it all out.
In the 20th Century, when average life expectancies were in the 60s and 70s, we died from a range of illnesses, but often from vascular diseases (heart attacks and strokes) and cancers. With our increasing longevity, the 20th Century diseases are being replaced by the neurodegenerative diseases of the 21st Century. These include Parkinson’s, motor neurone disease, the dementias (Alzheimer’s being the most common one in Australia) and many more less well known. They involve physical and very often cognitive elements, marked by increasing frailty and dependence. Impairment of mobility, balance and all the senses (hearing, vision, taste, smell and touch) are common features. They are all progressive.
In what ways is this world of neurodegeneration different?
Our hospitals are no longer full of acutely unwell younger people, as they were even during the period of my training. Many hospitalised patients now are older people who have had a fall, become delirious with a trivial infection, become confused after some “relatively” minor event, or are just not coping. The old rules simply no longer work.
First, our patients very often lack adequate cognition to give us a good history so that an appropriate diagnosis might be made, or lose their cognition over time. This means that a collaboration with family or care-givers is required to provide satisfactory management.
Second, the notion of confidentiality and privacy must be reconsidered. Those patients with failing cognition are vulnerable to their own lack of understanding, judgement and decision-making, abuse by others, bureaucracies, and a community health system which is still the poor cousin of hospital care. Families and care-givers frequently complain that doctors will not hear their concerns, and feel demeaned or angry when their stories are not heard or believed.
Third, neurodegeneration is not “curable”. There might be exacerbations of ongoing problems, or superimposed illnesses (often due to falls or infections) which can be treated. But in the main, these conditions are palliative. That means that there should be an early diagnosis, a plan generated, and families and care-givers as well as health professionals all party to it. Care-givers must know what’s ahead. It is essential that there is recognition of the palliative focus, and that each of these conditions is relentlessly progressive. Just how much do we put a frail elderly person through so that the same thing can occur within days or weeks of hospital discharge? How often do we ask our patients (and their families or care-givers) what they want? It’s OK to die. We will all do it, and we have no control over that. But we do, or should, have control over the manner of our death.
Fourth, admitting to hospital these frail elderly people is often bad medicine and it’s bad for the health system. The effect will be to “decondition” the patient so that an admission of a week with the presenting problem my well require a month or longer in rehabilitation in an effort to restore to function.
Solutions to the myriad problems of our ailing health system are complex. But talk of more beds and more doctors in hospitals misses the point. We need to understand our patients, and their needs and preferences. We need to stop pouring our precious health dollars into the seemingly bottomless pit of our hospital system and concentrate on prevention of these precipitants of admission, and to re-direct the resources into the community. Dementia alone is threatening to cripple the health system. Carers are carrying a huge and increasing burden with little recognition or meaningful support. When things go wrong, the fall-back position seems to be to admit to hospital, a choice which just happens to be the worst for everyone. Having a proper, well-resourced and comprehensive system of community care for those with dementia, backed by well-informed health professionals, supporting families and carers, is essential.
Reading Death Rules: how death shapes life on Earth and what it means to us by Queensland Palliative Care physician Dr Will Cairns (Vivid Publishing, 2015), and Being Mortal: Medicine and What Matters in the End (2014) by American writer and surgeon, Dr Atul Gawande should be mandatory for health bureaucrats and clinicians.
As we learn to appreciate the impact of neurodegeneration, we should constantly reflect on this question: what are we really trying to achieve? It’s all about people, and about how to give each of us the best time possible. It is not now about prolonging life at all costs.
Improving care for those with neurodegenerative conditions and supporting their carers, will also serendipitously aid the health care system. It might be more expensive in the short term. And certainly there will be considerable system reconfiguration, with substantial emphasis on education for both health professionals at all levels, and the community. The biggest challenge, though, might be the required culture change.
Advertisement: a good start for education on dementia might be to enrol in our Understanding Dementia MOOC (Massive Open On-Line Course) which can be found at www.utas.au/wicking/wca/mooc
Jane Tolman
(Associate Professor in Aged Care at the Wicking Dementia Centre at the University of Tasmania, previously Director of Aged Care in the Tasmanian health system)
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