At huge personal cost, neurosurgeon Xiang Jiuda has set up one of the mainland's first specialized facilities to care for people in a persistent vegetative state, Wang Qian reports.
Xiang Jiuda (center), founder of the PVS Care Center in Beijing's Miyun district, poses for a group photo with medical staff at the facility. (PHOTO PROVIDED TO CHINA DAILY)
In the past five years, Xiang Jiuda quit his job as a neurosurgeon at a public hospital, sold one house, mortgaged another, and set up and began operating a special care center. It provides palliative treatment for patients in a persistent vegetative state.
There are currently 32 patients under Xiang's care, who are tended to by a team of 20 nurses at the PVS Care Center in Beijing's suburban Miyun district. It is reported to be one of the mainland's first specialized nursing homes for people in a persistent vegetative state.
According to the American Academy of Neurology, a vegetative state is defined as "a state of complete ignorance of oneself and one's environment, but one where the sleep-wake cycle, the autonomic functions of hypothalamus and brain stem are completely or partially preserved".
The 50-year-old Beijing man says: "These patients have almost no hope of recovery, and they are rejected by most hospitals because of limited medical resources and rejected by nursing homes because of the high demand for daily care."
He adds that home care is usually the only option, which is a challenge for nursing staff, because it requires continuous medical intervention and extensive care.
In China, it is estimated that about 500,000 patients are in a persistent vegetative state, and this number is still rising. For Xiang, who has been a neurosurgeon for more than 20 years, there are thousands of heartbroken families behind these numbers.
After a year of market research, Xiang's nursing center was established on March 8, 2015, aimed at improving the quality of life of patients with anomalous pulmonary venous drainage and reducing the burden of care on affected families.
His startup funds－1.7 million yuan (US$242,739)－came from the house he sold, which was used on rent, hiring nurses and purchasing medical equipment.
Unlike other nursing homes, the center is more like a hospital, with medical facilities such as monitors and nursing beds in an intensive care unit.
Xiang says: "Usually, most vegetative patients at home die within three to four months, but under the medical care of hospitals, they can live for nearly two years on average." One 86-year-old patient has stayed at Xiang's center for more than four years.
Charging 7,500 yuan to 10,000 yuan per month, a patient will receive 24-hour monitoring and procedures, such as suction, tracheostomy care, turning, bathing and toilet care, which are carried out by trained nurses. Comparatively, an ICU at hospital will cost around 3,000 yuan per day.
"Caring for a PVS patient means comforting the family. The patient is still a living person," Xiang says, adding that the center is home for these patients, which allows their relatives to return to a normal life.
For Xiang, the center is his career, not business, he says.
For most families with a PVS relative, as the old saying goes, where there is life, there is hope. For them, Xiang's center provides the latter.
Xiang talks to visitors about the facility. (PHOTO PROVIDED TO CHINA DAILY)
Difficult start
When the center opened in 2015, there was only one patient, Zhang Xiaocong (pseudonym), who was introduced to Xiang by a friend and fellow doctor. Xiang didn't know that he would end up caring for just a single patient for more than a year.
During the period, Xiang and seven nurses took shifts to take care of Zhang, who was also the mother of a daughter and a son. After suffering a brain injury in a car accident in her 30s, she had lain in a PVS for two-and-a-half years before entering the center.
In medical terms, a vegetative state is declared permanent when trauma lasts for more than one year or a non-traumatic cause lasts more than three months.
Xiang still has fresh memories of the first meeting with Zhang and her husband.
"A cook before the accident, her husband looked quite thin. He told me that he had not had a hot meal or a good sleep during the two-and-a-half years he spent by Zhang's side in hospital," Xiang remembers.
The husband prepared a meal for the medics and himself that day at the center and enjoyed his first decent meal since the accident.
Installing a 24-hour camera to stay connected, he left the center and restarted his life, finding a job in South China.
Within three months, Zhang's situation had worsened. She vomited anything fed by a tube through her nose. While consulting with an experienced gastroenterologist through live video chat, Xiang followed the doctor's instructions to feed the patient less food, but more frequently. Zhang's condition finally stabilized.
She survived for more than two years at the center before eventually succumbing to a pulmonary embolism.
Zhang's case made Xiang realize how hard a career he had chosen.
"I'm a neurosurgeon, rather than a general practitioner, but in the center, I am the only doctor available to deal with various emergencies," Xiang says, adding that it took him at least two years to explore and regulate the procedure for the routine of comfort and care that is carried out by the nurses.
"In the first year, I spent more than 700,000 yuan in the center, while only getting more than 100,000 yuan from the only patient," Xiang says, adding that he didn't expect to make money from the business.
In 2016, the center welcomed its second patient. In 2017, six patients entered. In 2018, 13 patients received supportive care. To date, 44 patients who have been cared for at the center have passed away.
To meet the increasing demand from patients across the country, Xiang invested another 3 million yuan, which came from the mortgage on his house, to move the center to its larger, current premises in Miyun, more than 70 kilometers from downtown Beijing.
Spending a further 2 million yuan on a reconstruction, the 500-square-meter bungalow was divided into three areas and each can accommodate 11 patients with six nurses in charge. In order to keep things under budget, Xiang also acts as the center's cook, cleaner and handyman. He still says the center struggles to make ends meet, despite the demand for its services.
With 32 patients already laying silently at the center, an increasing number of people have contacted Xiang about their PVS relatives after reading his stories online. Another 10 patients are waiting for beds and Xiang is planning to make space for another patient area, which can accommodate these patients. However, his plan to hire six more nurses is on hold due to the novel coronavirus outbreak.
Nurses take care of patients at the center. (PHOTO PROVIDED TO CHINA DAILY)
Tough situation
Due to a very low number of exclusive facilities for such patients, there has long been a lack of research into people with disorders of consciousness (such as those in a vegetative state or minimally conscious state), financial aid and the public awareness about the group.
Citing the different levels of care－including acute care hospitals, subacute rehabilitation hospitals and nursing homes－that are available to DOC patients in the United States, He Jianghong, a neurosurgeon at the PLA Army General Hospital in Beijing, told news portal Sixth Tone that patients in China are forgotten once they leave the intensive care unit, even if an operation for trauma or disease leaves them with DOC.
According to Xiang, the current medical insurance system doesn't include specific instructions on vegetative patients.
Facing psychological stress, families with vegetative patients have to handle the heavy economic burden of treatment and care.
According to a survey conducted by He, over half of the relatives who took on the burden of care experienced mental stress and nearly 90 percent were frequently sleep-deprived.
He estimates that, for a patient in a PVS, medical bills will range from 500,000 yuan to 1 million yuan in the first year of treatment in a hospital, with average annual maintenance costs later up to 200,000 yuan.
In February, the Beijing Civil Affairs Bureau issued a notice that classifies people in a PVS as severely disabled and are eligible for 600 yuan as nursing aid per month.
Although recovery among the vegetative patients is rare, He's team has been devoted to treatment and rehabilitation of DOC patients.
In 2011, his team started deep brain stimulation surgery in China. It is an invasive technique that requires the surgical implantation of a stimulator. On average the team can treat about 50 such patients a year, according to He.
In 2018, the Chinese Society of Consciousness and Disorders of Consciousness was founded to promote a multidisciplinary approach to DOC studies.
Contact the writer at wangqian@chinadaily.com.cn
