It’s one thing to be a commentator on health policy issues; it’s quite another to experience them first-hand, as a patient or carer. In February this year, my husband Bruce was helicoptered down from the Rocky Mountains ski fields to an intensive-care unit in a Denver hospital, in septic shock as a result of a major infection in his leg. He, and I, spent the next twenty-four days in hospital. I had read much about the physical, mental and emotional impact of extended hospital stays: now I had an opportunity to observe up close the problems patients face and the efforts of staff to alleviate them.
We were in a very new, not-for-profit facility whose overall organisation and practices were exemplary. Every room, including those in the intensive-care wards, had a window, the decor was pleasant and low-key, and visitors were encouraged. Along with the scary diagnoses and the high technology came caring and sensitive nursing care.
But it was also a frenetic, noisy and alien environment, with IV pumps pinging, codes called at all hours, a continual stream of clinical staff, hourly nursing checks, the regular delivery of a huge number of medications, and housekeeping. And there was some unexplainable craziness – Bruce and the other patients nearby were routinely woken to be weighed at 3am (until we protested).
It was shocking to see how quickly even a fit patient could become deconditioned. Aside from the problem of staying mobile with a severely damaged lower leg and all the monitoring gadgets attached to him, Bruce lost his appetite. The hospital food was adequate but not great and his taste buds were affected by his medications. Even when I scrounged around Denver for a pastrami sandwich or we brought in pizza for the Oscars, it was hard to tempt him. He lost a lot of weight and muscle tone.
In other words, the medical miracles that today’s hospitals can deliver for patients with life-threatening conditions can come at a huge price. We know all about the financial costs of high-quality healthcare, but the long-term, often life-altering, physical, cognitive and other mental impairments for patients who survive an acute episode are less commonly considered.
Around 150,000 adults and children are admitted to intensive-care units in Australia every year, and many more patients have significant hospital stays. Their physical and mental functions can deteriorate significantly during their stay, especially if they’re elderly, but even if they’re otherwise healthy children. Previously fit young adults hospitalised after a road accident can find their rehabilitation hindered by a loss of physical condition and, later, by flashbacks to their time in intensive care. Middle-aged men may struggle to focus on their home lives and work for months after open-heart surgery. And many families have been shocked at the rapid onset of dementia and aggressive behaviour in an elderly relative hospitalised for something as simple as a urinary tract infection.
These impairments are more likely the longer a patient is in hospital, and they are most commonly associated with intensive-care episodes, especially for patients who undergo mechanical ventilation. They are under-recognised and under-diagnosed, leaving patients, their families and even their doctors struggling. All the evidence shows that a successful recovery means focusing on more than the illness or injury itself.
Not surprisingly, immobilisation can have significant effects on nearly every organ system in the body. This is particularly true in intensive care, where patients are confined to beds by deep sedation, breathing tubes and life-sustaining equipment. For every day in intensive care, muscle strength is estimated to fall by an extraordinary 3 to 11 per cent, an effect that can persist for months or even years. For an older patient, this can be the difference between dependence and independence; for younger patients, it can dramatically slow the rehabilitation process.
Hospitals certainly try to keep patients mobile, even if they’re in intensive care and are only able to sit up at the edge of the bed. But these actions rely on busy nursing staff and allied health professionals having time to help. One study estimated that the average elderly hospital patient walks for only forty-three minutes a day. Visiting family can often help, but professional help is needed to manage patients’ intravenous lines, drains and equipment, and to prevent falls.
Some of the deconditioning that patients face is a result of poor nourishment. Hospital food is improving, but many patients are unable to feed themselves, have difficulty swallowing, and – like Bruce – find that their senses, including taste, are impaired by medications. Patients need referral services and follow-up for these problems as well as for the condition that first brought them to hospital. Malnutrition can affect recovery and wound healing; reduced stamina and coordination increase the risk of falls and make it harder to resume normal daily activities.
Among the most common complications of hospitalisation – and one that too often goes unnoticed and untreated – is hospital-acquired delirium (sometimes called ICU psychosis). This alarming condition, marked by disrupted consciousness, attention and cognition, typically begins abruptly and can last anywhere from a couple of days to several months. Some patients have hallucinations, some become aggressive, others are sleepy and lethargic. Contributing factors include surgery, infection, isolation, dehydration, poor nutrition, and medications such as painkillers, sedatives and sleeping pills, but the underlying physiological cause is a mystery.
A recent study from the United States estimated that 20 per cent of patients aged sixty-five and above will develop hospital-acquired delirium; this rate rises to 60 per cent for certain major surgeries and to 80 per cent for those treated in intensive care. Some studies have found more than four in every five intensive-care patients, regardless of age, developing the condition, and a quarter of all these patients will suffer symptoms of post-traumatic stress disorder when they are discharged – a rate comparable to that for combat veterans and rape victims. Interestingly, the prevalence and incidence of delirium in Australian hospitals appear to be lower than in the United States, but this may reflect a lower detection rate.
In a busy ward, the mental status of an older and/or sicker patient can be hard to assess, especially if dementia is already present. It is estimated that about 40 per cent of delirium cases are preventable. In the first instance, it is important to identify those patients most likely to experience this problem. Hospitals can reduce the risk by minimising noise and stress, not waking patients unnecessarily, providing windows, clocks and familiar items from home, and making sure patients have access to their hearing aids and glasses. Early psychological intervention is also important.
Otherwise, hospital-acquired delirium will continue to be costly for the healthcare system and for patients. It can lead to longer hospital stays, readmittance shortly after discharge, and a failure by patients to follow medical advice and make follow-up medical appointments. Older people may be wrongly diagnosed with dementia and lose their independence.
Australia has made considerable progress in making hospitalisation less toxic, but there is more to be done, and the focus needs to extend beyond the elderly. In July 2016, the Australian Commission on Safety and Quality in Health Care launched a Delirium Clinical Care Standard and accompanying resources to provide guidance to consumers, clinicians and health services about how to give appropriate care to people at risk of, or with, delirium. The federal Department of Health provides a useful Delirium Care Pathways document, but this, too, focuses on older people in residential and community care and has not been updated since 2010.
The National Health and Hospitals Reform Commission has made some recommendations that could help this effort. It proposed increased investment in and expansion of sub-acute services, and more efficient and effective transfers of patients’ care to these and other, non-hospital settings. In some cases this might mean initiatives such as hospital-in-the-home to keep patients out of hospital completely.
It’s important, though, that these initiatives don’t become “quicker and sicker” discharging of patients or substitute alternatives to hospital care solely on the basis of cost. They should be patient-centred and driven by patient outcomes. They will require new resources (the cost of which will be at least partially offset by savings over the medium to long term), improved links with community-based health and social services, and a change in culture among governments, bureaucrats, clinicians and patients.
To date, the drive for improvements in hospital quality and safety has been focused primarily on medical errors and issues like hospital-acquired infections; it has, until very recently, ignored the harm that is intrinsically linked to the delivery of high-technology care in settings that are often far from patient-friendly. Hospital-acquired delirium is a problem born of success – research and clinical practice must now work to ensure that “ICU survivors” can enjoy the life that medical miracles have provided them.
In many ways, we were fortunate during our stay in Denver, not least because we had access to the tools we needed to avoid what we came to refer to as “hospital brain”: the digital gadgets that kept us in touch with family and friends, provided entertainment other than the TV, and even allowed us to work. They brought the world to that room – including the world of research about the effects of hospitalisation.
With excellent support mechanisms inside and outside the hospital, we were the beneficiaries of a series of medical miracles, with none of the downsides that too many people in similar situations have suffered. We mark ourselves among the very lucky. •
