杏吧原创

Illness simulators boost medical empathy

From heart failure to schizophrenia, illness can be best understood by experiencing the symptoms first-hand
The University of Illinois virtual house, showing vision lost through macular degeneration
The University of Illinois virtual house, showing vision lost through macular degeneration
(Image: VR in Medicine Lab/Univ or Illinois/VR Lab UMEA Univ)

HANK is walking through the park, and it鈥檚 a struggle. His chest is tightening, his breath is short, and his legs feel like lead. He can feel his heart pounding. Maybe Hank should have listened to his wife, who wishes he would tell his doctor just how bad things have become.

Hank is typical of many thousands of patients with undiagnosed heart failure. Now doctors and nurses are experiencing his world 鈥 for a few minutes, at least 鈥 through a device called the Heart FX Pod. Sitting in a booth with a projection of a city park in front of them, they 鈥渨alk鈥 using pedals like those on a gym machine, listening to snippets of Hank鈥檚 story. Then, as the pedals鈥 resistance increases, a pneumatic vest tightens, making breathing difficult, and the chair thumps to mimic a straining heart.

It鈥檚 a distinctly uncomfortable experience. 鈥淭he proverbial walk in the park was not a walk in the park,鈥 says Edward McMillan, a cardiologist who climbed into the Heart FX Pod when it visited Charlotte, North Carolina, on 23 March. Hundreds more doctors and nurses will have the chance to experience Hank鈥檚 symptoms over the coming months, as the drug company AstraZeneca takes five of the pods on a year-long tour of 63 US cities.

Heart failure, which can occur for a variety of reasons including diseased valves or untreated high blood pressure, simply means that the organ has become too weak to push enough blood round the body. A staggering number of people with heart failure are only diagnosed for the first time when they end up in the emergency room, says Joanne Curley, AstraZeneca鈥檚 cardiovascular product manager. Like the fictional Hank, many patients underplay their symptoms when talking to their doctors. Others are misdiagnosed with respiratory problems. As well as encouraging earlier diagnosis by family doctors, Curley hopes the Heart FX Pod will help heart specialists to be more understanding of their patients鈥 needs. 鈥淐ardiologists often feel like they know everything,鈥 she says. 鈥淏ut what can happen is they stop seeing their patients as people.鈥

鈥淐ardiologists often feel like they know it all, but they may stop seeing patients as people鈥

The Heart FX Pod is just one of several similar projects. Some schemes use sophisticated virtual reality (VR) simulations, others are more low-tech. What unites them is the goal of providing a better awareness of what patients are going through. 鈥淭he key word is empathy,鈥 says David Zeltzer, who in the 1990s helped design a pioneering art installation that inspired some of the today鈥檚 projects (see 鈥淟ife imitates art鈥 at the bottom of this article).

Judging from McMillan鈥檚 reaction, the Heart FX Pod seems to be doing its job. McMillan was frustrated that many patients visiting his clinic at Mid Carolina Cardiology in Charlotte would spurn his advice to exercise more. 鈥淣ow I understand,鈥 he said after stepping out of the pod. 鈥淢y perception has been altered. What we think of as mild heart failure is disabling.鈥

Other projects are employing even more sophisticated technologies to get their message across. Researchers at the University of Illinois at Chicago, for instance, are using a VR simulation to mimic the effects of macular degeneration, glaucoma and diabetic retinopathy, all of which cause blindness. Having donned virtual reality goggles, volunteers must find their way around a house with the limited vision typical of each condition to guide them. The prototype, developed with funding from drug company Allergan, already includes a cat that squeals if you step on it. 鈥淲e want to add a glass falling off a table, and doors that are difficult to open,鈥 says Mary Rasmussen of the university鈥檚 Virtual Reality in Medicine Lab.

Visual distortions can also plague patients who have suffered a stroke, which is the focus of a VR simulation developed by G枚sta Bucht, a specialist in geriatric medicine at Ume氓 University in Sweden and his team. Again, volunteers must travel through a house with impaired vision, including blurring when they move their head and loss of input from one side of their field of view. They sit in a wheelchair, set up to simulate weakness down one side of the body. 鈥淲e have electric motors to give resistance, so one of the wheels feels heavier than the other,鈥 Bucht explains.

It is a disorienting experience, says Britt Ehrlin, a geriatric nurse who has been through the Stroke Simulator twice. The second time, she was being interviewed by a radio reporter, and became so agitated that she had to stop. 鈥淚t has made a big difference to my understanding of how patients react and feel,鈥 she says.

Fantasy game

VR simulations rely on highly skilled programmers and expensive equipment. While the cost is coming down, some researchers think cheaper technologies offer better means of reaching the masses. At the University of Queensland in Brisbane, Australia, Peter Yellowlees developed a VR simulation of schizophrenia (New 杏吧原创, 29 July 2002, p 18). However, since moving to the University of California at Davis, he has turned to the online multi-player fantasy game Second Life, in which people adopt characters called avatars. 鈥淚t鈥檚 more accessible,鈥 he says.

Compared to the Ume氓 and Chicago projects, the experience is less vivid, but Yellowlees鈥檚 Second Life simulation gives insights into the hallucinations that torment people who have schizophrenia. Inside a hospital ward, voices urge you to kill yourself, a floor suddenly becomes a chasm with stepping stones, and the wording on a poster morphs to call you 鈥渟hitface鈥. More than three-quarters of visitors who completed a survey said it improved their understanding of the auditory hallucinations experienced by people with schizophrenia, while 69 per cent gained a better understanding of the disease鈥檚 visual disturbances.

Other projects eschew high-technology altogether. The Virtual Dementia Tour Kit, developed by Second Wind Dreams, a US charity that aims to improve perceptions of the elderly, consists of some distorting goggles and a tape playing confusing sounds. It may sound primitive, but volunteers who try to follow instructions start behaving like people with dementia, muttering to themselves and doing things like putting a towel around their shoulders when they are unable to find a sweater. They know they have got the wrong item, but somehow doing something makes them feel calmer, says P. K. Beville, Second Wind Dreams鈥 founder. The kit helps carers understand behaviours that they find frustrating, but which help people cope with dementia, she says. 鈥淭he tearful director of a nursing home said she had a lot of apologies to make.鈥

While the anecdotal evidence is compelling, the real test of all the simulation projects will be whether they produce lasting improvements in patient care. So far, this has not been investigated systematically. But companies like AstraZeneca and Allergan, which stand to benefit from improved drug sales if the projects succeed, should be able to measure that aspect of their impact 鈥 even if they choose to keep the results private.

鈥淥ur clients hold that data very close,鈥 says Rick Grande of the RJO Group, a specialist marketing firm that worked with AstraZeneca to develop the Heart FX Pod, and has produced similar simulations for other drug firms. 鈥淏ut we do know that this has quite an effect on sales and awareness.鈥

Life imitates art

The brain damage Rita Addison suffered in a car accident in 1992 left her with distorted vision, hearing and balance, and shattered her career as a nature photographer and psychotherapist. Yet outwardly, she seemed perfectly healthy. 鈥淚 was walking around without any visible band-aids,鈥 says Addison, who says that her inability to explain the severity of her symptoms left her in a state of 鈥渁bject desperation鈥.

So she decided to design an art exhibit that would allow others to experience her distorted perceptual world. She teamed up with David Zeltzer, a VR pioneer at the Massachusetts Institute of Technology, and Marcus Thiebaux of the University of Illinois at Chicago 鈥 home of the CAVE, a virtual environment in which 3D images are projected onto the walls and floor of a small room.

By 1994, Addison had completed her CAVE installation called Detour: Brain Deconstruction Ahead. Detour鈥榮 mix of distorted images and clanking sounds made an immediate impression. Addison was in hot demand on the lecture circuit, and later helped researchers at Ume氓 University in Sweden launch their stroke simulation project. She says that by presenting her work as art she was able to reach out to medical professionals who might otherwise have ignored a lay person.