On the Front Lines of Hospice Care

“Could I die happy right now? If I only had one month left to live, would I keep doing the work I’m doing now?”

These were the two questions posed by Hsu Li-an as he led a lecture in front of a full house at a class on “Hospice Care and the Aesthetics of Existence” at Kao­hsiung’s ­Hongfa Temple. Asking them, he was met with total silence.

Just as the leaves on the trees go from green to brown to fallen, so too does human life grow, thrive, and ultimately end.

Hsu Li-an, a member of the board of directors of the Taiwan Hospice Organization, explains, “Every day we act like we’re going to live to be 100, forgetting that in reality we could die at any moment. We want everything to be beautiful and perfect and to last forever, but we ignore the fact that fate is a fickle beast.”

To help promote hospice care and healthier attitudes toward life and death, Hsu gives some 200 lectures a year across Taiwan. He has even been invited to speak in Japan and Malaysia.

“Death and disease are things I was well acquainted with even before becoming a doctor. My family and I have crossed paths with death many a time in the past,” says Hsu, a self-described “runt.” As a child he had a frail constitution, once contracting a case of measles that led to pneumonia, for which his parents took him to the best doctors in southern Taiwan.

One year as he was preparing for the Joint College Entrance Exams, his beloved grandfather suffered a stroke. Hsu promised himself he’d take good care of his grandfather after finishing his exams, but his grandfather couldn’t hold out that long. “This was my first experience of having a family member die, and it really made me realize that time waits for no man.”

Hsu Li-an has been involved in palliative care for many years, not only working at Ping­tung ­Hospital, but also serving as CEO of the Kao­hsiung-based Zhangqihua Culture & Art Foundation, which aims to promote death education. As well as staging a picture book competition, the foundation publishes materials such as a set of DVDs on hospice and palliative care.

After completing his military service in 1993, Hsu traveled to Hua­lien to serve as a family doctor at Tzu Chi Hospital. Seeing people die in the emergency room and in the wards, he began to feel powerless to help, even as a doctor.

“A doctor’s duty is to save lives through treatment, but for those who are beyond saving, or for whom treatment is ineffective or even makes things worse, what are we supposed to do?” Then, when Temple University professor Charles Wei-Hsun Fu’s book Dignity of Death and Respect for Life was published in Taiwan, it started a wave of thanatological publications, and Hsu began studying and reading on the subject.

In 1995, he took a month-long training program at National Taiwan University Hospital’s family medicine ward while the hospital was setting up its hospice and palliative care ward. His training done, he returned to Tzu Chi Hospital and began planning for a similar ward there, working on promoting concepts of hospice care, training medical staff and volunteers, and laying down plans for the equipment and facilities required.

In July 1996, Tzu Chi Hospital opened the Heart Lotus Palliative Care Ward, providing end-of-life care for terminal cancer patients and their families throughout their final journey.

When the ward opened, Hsu was just 31 years old. Two years later, he worked with a terminal cancer patient his own age, Ah-Bing, who gave Hsu a shocking sense of having a brush with death.

Ah-Bing came in on his 33rd birthday. With the cancer having started to destroy his arteries, the staff all knew there was a good chance he would die of severe blood loss. As he was only 33, every­one wanted to believe he’d be able to pull through.

“When he started bleeding out, I could see a look of terror in his eyes, and panic among the staff and his family. When I told him to relax, and that I was about to give him a shot that would get rid of the pain and help him sleep, there was a look of understanding in his eyes, as though he was telling me he was ready to accept the hand fate had dealt him.”

“Being there with Ah-Bing as he died felt like I was dying myself,” says Hsu. “It was like my 33 years of life had been nothing, seeing death come for someone my own age.”

Then his own uncle was diagnosed with stomach cancer and admitted to hospital, and Hsu’s role changed from attending physician to family member. Being pulled in both directions, this experience was a huge test for him.

“As a doctor, I can talk honestly and openly with my patients about life, death, illness, and planning for the future, but as a nephew, my aunt wanted me to keep the situation hidden from him. I didn’t decisively tell my uncle his prognosis, even though as a doctor I know I should have. I felt helpless.”

This experience really drove home to him the importance of telling patients the truth about their illness, but also highlighted the difficulty and complexity of the situation. It was what motivated him to enroll in National Dong Hwa University’s graduate program in ethnic relations and cultures in 1999. There, under the supervision of Professor Yee Der-heuy, in 2005 he completed his master’s thesis, in which he analyzed the issues around communicating prognoses to terminal cancer patients.

Hsu jokes that unlike most doctors, working so close to death’s door as he does, he eventually loses pretty much all his patients, but because of the excellent care he provides before that eventuality, both patients and families are grateful nonetheless.

When an elderly man, completely blind and suffering from colon cancer, said to him, “You’ve treated this old man well; I’ll be sure to look after you from the other side,” Hsu smiled, thinking, “I reckon I’ve done the right thing.”

To help promote hospice and palliative care, Hsu decided to put his years of experience at the Heart Lotus Palliative Care Ward into writing, publishing three books that tell tales of his encounters with death in a lively style tinged with black humor.

His youngest patient, Xiao You, taught him a lesson about the fragility of life with her own life, which had less than 600 days left when she came in. She resolutely stuck to the belief that each minute she was alive was a gift, and made sure she looked her best every single day, even insisting on wearing her own clothes rather than a hospital gown.

A Buddhist, Hsu considered his patients like bodhisattvas, like saints here to teach us about life through their own life, illness, suffering, and death. Hsu’s hope in publishing his stories was to overturn the image of the medical system as cold, uncaring, and robotic.

In a book that appeared in 2003, he began touching on more sensitive matters of hospital administration, such as requiring patients to wear hospital gowns and doctors to wear ties, suggesting that these need reconsideration.

Unexpectedly, in March 2004 the hospital said they would not renew his contract, and after 11 years of service at Tzu Chi Hospital, Xu left, taking up a position as chief of the family medicine ward at Hualien Hospital and setting up another hospice and palliative care ward which he oversaw until stepping down in 2006.

After leaving the two hospice wards he’d set up, Hsu was inspired to develop the “Hospice Gardens Community.” “Can we find another way to spur the medical system toward a more humane kind of care?”

Hospice and palliative care brings with it a particular perspective on life, emphasizing respect for the patient’s autonomy and individuality. The concept behind Hospice Gardens Community is one of combining a retirement home with end-of-life care, as well as creating a space to train volunteers and a care location with service modeled on homestays and resorts. In short, it aims to be a milestone in palliative care services.

Having helped thousands in their final journey, Hsu says that the biggest lesson he’s learned is to have respect for life. Being a compassionate person who can’t bear to see people suffer, he is well aware of the need for change in the medical system, but also knows full well how hard such change can be to enact. As a result, he is committed to dedicating his next 30 years to reforming hospice and palliative care.

And that, in short, is Hsu Li-an: a doctor dedicated to fighting for better-quality palliative care for as long as he has breath left in his body.