The divine nature of giving palliative care
Having been a medical social worker for one year, Wang Dan set a new goal — devoting herself to palliative care and helping develop the role of social work in medical treatment.
“Once a head nurse asked me if I would talk to Uncle Cao, a depressed cancer patient,” Wang recalled.
Cao was divorced, had lost his only child and always wept alone when thinking about his condition.
“When we talked about human kindness and the very Earth he draws sustenance from, I could feel excitement building within myself,” Wang said. “I told him thousands of people die every day, and merely being alive and able to breathe and eat is a great gift.”
Gradually, Cao began to smile.
“I felt like I exported some of my energy into his heart,” Wang said. “It was a brand new experience to transport myself into another person’s world. Maybe he just needed someone to sit on his bed and listen to him. I felt a sense of responsibility then and there.”
In January 2019, after graduating with a master’s degree in social work from East China University of Science and Technology, Wang became a professional social worker at Chengjiaqiao Community Health Center.
The district hospital has offered hospice care since 2012, one of the first 18 hospitals in Shanghai to do so. In the 1980s, it was the first Shanghai hospital to specialize in treating patients suffering from senile dementia.
“We have a history of taking care of the old and infirmed who require more social support in not only medical treatment and subsidy policy but also service programs,” said Ma Zhouli, Party secretary of Chengjiaqiao. “Medical social workers provide a good link between patients and our medical staff. Sometimes they are like translators, decoding medical terms so patients feel a little bit better and understand a lot more.”
Now with around 200 in-patients, the community health center employs three full-time social workers including Wang.
“I mainly care for those diagnosed with advanced cancer deemed to have fewer than three months to live,” said Wang. “Instead of curing diseases like doctors, we focus on pain management.”
For her, to care for the dying is to revere life. The role of a hospice social worker is to advocate for each patient’s end-of-life wishes and help people cope with the emotional aspects of late-stage illnesses.
Hospice social workers also help patients’ families identify additional local services and resources.
“I chat with patients, listen to their stories and try to help them cope with illness and loss, so maybe they’ll feel better in their final days without regrets,” Wang said.
She also recalled a leukemia patient surnamed Zhang whom she worked with last year. The first time she saw him, he was lying in bed with an oxygen hose in his nose. Next to him was a cap embroidered with “PLA Navy Liaoning Ship,” motivating her to ask if she could take “a handsome photo” of him wearing the cap.
To her surprise, Zhang lifted his right hand and gave a solemn military salute.
“I was deeply moved at that moment,” Wang said. “After I took his picture, I asked if he wanted to say something to his children through a video.”
Emotionally motivated, Zhang, who served in the Navy in the 1950s, turned his head toward her and said “I’ve lived for 84 years. This is the first time I’ve felt valuable.”
They later planned to make a photo album together the following week. However, before that could happen Zhang had slipped into a coma and soon thereafter died.
“I’m glad I captured Zhang’s final image for his family,” Wang said. “It’s a big deal in my life. I began to truly appreciate the importance of palliative care.”
Born in 1993 in central China’s Henan Province, Wang was raised by her grandparents. Her father had passed away and her mother remarried and left Wang when she was seven.
“Fortunately, my grandparents love me very much. Besides, many elders in my family treat me well,” she said.
In high school, her uncle, who taught in the department of social work at a university in Shanghai, introduced Wang to hospice care.
“When I found out only two of my 35 classmates considered majoring in social work, I wondered whether I made the right decision,” she said. “Even now, I still have to explain to people how a social worker works with patients and their families. Some of my friends think my job is like an ayi working for neighborhood committees.”
After a year at the community health center, Wang feels the divine nature of maintaining comfort and quality of life.
“If you slow your manner of speaking, you find yourself listening more carefully and communicating better,” she said.
Recently, Wang has been helping patients “cloud meet” with family members via the Internet. During the coronavirus outbreak, family members were not allowed to visit patients.
“There was a time when we received 100 video calls a day,” she said. “You can’t imagine how happy patients were when they saw their children.”
Besides routine palliative care, Wang also teaches life-education classes to patients’ families, helping them learn how to communicate with dying relatives and deal with grief.
In 2019, she attended an international conference in Beijing, “Ageing, End of Life Care and Social Policy,” hoping to learn from the latest research and best practices.
“Hospice care is not only about working with patients and lending families a helping hand, but also spreading the story of life from little-known people who may influence more lives and help people get through life’s challenges,” she said.
The latest official figures show Shanghai had more than 27,000 certified social workers at the beginning of 2019, making it one of the city’s fastest growing occupations.
In addition to medical care, social workers can be involved in more than 20 different areas, such as social rescue, marriage and family, crime prevention and post-disaster services.
Q: You’ve been a palliative care social worker for one year. Can you share the biggest change before and after?
A: Originally, I chose to major in social work more because of my uncle’s suggestion than actually having a passion for it. But now that I’ve graduated and worked in the field for a while, I’ve found that I truly am passionate about social work as it relates to palliative care.
Q: What’s your most lasting memory from the past year?
A: My first speech last summer in front of an audience of 300 people. I was extremely nervous. In fact, I don’t even have the courage to watch a replay of it on video.
As a social worker, I feel a responsibility to relay my experiences to others, and giving speeches is a great avenue for doing that. It’s like an amplifier for a dying person’s voice. Because all of us will eventually die, I hope hearing these stories will cause people to reflect on their lives more.
I must mention TELL, an organization that helps people tell their stories on stage. The founders, Jiang Tao and Tian Cong, both graduated from Shanghai Jiao Tong University and taught me how to tell a story well. They also have a reading club, through which I’ve read 50 books in a year, and I’ve really enjoyed the experience. Reading helps me do my job better.
Q: How well do you understand the meaning of life?
A: Cherish everything in your life. Every day I see dying people suffer with things like catheters and gastric tubes, which makes me thankful I’m still young and healthy. Moreover, I feel like what I do is meaningful, both to me and society. My hope is when my life is close to ending, I’ll look back and have no regrets.
Q: What’s your goal?
A: I want to be a palliative care master and continue to develop my skills in such a way that makes it easier for social workers and volunteers to directly help those in hospice. I also want to do more with life education that brings together young and older people. Elderly people have so much wisdom and life experience that younger people can learn from.