Taiwan’s Walking (or Lying) Dead
How’s your Mom?
Dying Taiwanese patients kept alive artificially accounts for half the world’s total
In 2016 an astonishing 1,701 terminally ill Taiwanese were kept alive by machines that took over their heart and lung functions –half the world’s total according to National Health Insurance data compiled by a local doctor, Chen Hsui-tan of National Yang-Ming University Hospital’s.
In addition, the number of Taiwanese patients kept on ventilator machines to support breathing is remarkably high, with 16,902 such patients in 2016, outnumbering US patients on ventilators by 5.8 times although the island’s overall population is a fraction of that of the US.
With the cost for one Taiwanese patient on ventilation averaging NT$700,000 (US$23,000), the government is spending NT$11.3 billion, or 2 percent of the entire National Health Insurance scheme’s annual budget, for the treatment alone.
Contrary to expectations, the brunt of the heart-lung practice, which is quite painful and uncomfortable, is borne by end-of-life patients with dementia (PwDs), as opposed to cancer patients. Dementia patients have a higher incidence of enteral tube insertion and feeding, endotracheal intubation and tracheostomy, mechanical ventilation, hemodialysis and cardiopulmonary resuscitation.
“Dementia patients in their last year of life in Taiwan underwent aggressive interventions significantly more frequently than did their counterparts in Western countries,” said Dr. Chen Ping-jen, director of the Palliative Care Center and Department of Geriatrics and Gerontology of Chi Mei Medical Center in Tainan.
“Emergency treatment mainly took place in the last month of the patients’ lives, meaning that they suffered tremendously in the weeks leading up to their deaths.”
According to Dr. Chen’s latest study, the discrepancy between Taiwan and Western countries might be explained by a combination of culture, religion, administrative financial incentives and the doctor-family-patient relationship.
Chinese culture, which is predominantly Confucian, is the main social context in Taiwan, meaning most of the elderly refrain from discussing death-related topics, which makes reasonable end-of-life care planning difficult.
Dr. Chen also found that a majority of medical professionals and patients rely more on families’ preferences and physician authority than on patient wishes. Physician authority reliance may be fueled by a surge of medical dispute cases over the past two decades, causing medical professionals to practice defensive medicine by doing additional and aggressive life-prolonging interventions even for patients with poor prognoses.
“In addition, Chinese family caregivers are usually reluctant to prevent aggressive interventions because it is a Chinese cultural belief that dying relatives become ‘hungry ghosts’ if they are not supplied with artificial nutrition until they die, and because the general public has an insufficient understanding of life-sustaining treatments,” Dr. Chen said.
Financial aspects, too,clearly deserve blame for the fact that so many Taiwanese end up with a mass of tubes attached to them.In Taiwan, the cost of the heart-lung machines, called extracorporeal membrane oxygenation (ECMO) machines, is reimbursed by the National Health Insurance (NHI) scheme, which covers virtually the entire population.
The use of ECMO increased markedly in Taiwan between 2000 and 2010 and particularly after 2002, when the NHI began reimbursing the costs of ECMO.
There was a large jump in ECMO use in 2006 and another in 2009, the former after several very high profile cases involving successful ECMO treatment that were widely reported in the media, the latter after NHI waived the 10 percent patient co-payment for a range of ECMO indications.
“Indeed, [in 2006] ECMO became so widely publicized in Taiwan that patients and their families asked for ‘Dr. ECMO’s’ help for the treatment of critical conditions, regardless of the clinical indication,” saidDr. Hsu Chiao-Po Hsu, a doctor at Taipei Veteran General Hospital, in another study. “And there was an increase in ECMO supply by hospitals and doctors during this time period. Previously, ECMO devices and operating teams were only available at large-scale medical centers,but with the increased media exposure and growing demand from patients, many regional hospitals began offering ECMO.”
Unfortunately, Hsu said, when the heart-lung machines extend life without any real hope of recovery, patients who may have been suitable organ donors may be less suitable or completely unsuitable after usage.
As to why dementia sufferers are more likely than cancer suffers to be tortured by life support machines, Dr. Chen points out that dementia is not normally considered a progressively terminal illness by the general population or medical professionals in many Asian countries.
Also, the “dying trajectories” of cancer and dementia are different.
“While the gradual deterioration of people with dementia for a longer time is recognized, the trajectory might be cut short by death after an unexpected acute illness like pneumonia,” Dr. Chen said. “It is challenging to accurately estimate life expectancy in advanced dementia and provide timely palliative care based on a paradigm of survival prediction.”
Marc Moskowitz, a professor at the University of South Carolina’s Department of Anthropology with a strong Taiwan research focus, believes that children may decide to keep their dying parents on life support so long because it is relatively cheap in addition to the pressures of needing to appear like a filial son or daughter.
“The more I think about it the more I think it is just not wanting people to see them as bad children,” Moskowitz said. “In that sense the parent in question becomes a kind of sacrifice on the alter of filial piety – one of Taiwan’s many religious-cultural paradoxes.”