1.A patient’s perspective—My son’s wedding
“I suffer from Apocrine (sweat gland) cancer and have been treated with chemotherapy, with no visible change to my condition. My wife and four children, all without permanent jobs, must now rely on farming for their livelihood since I have lost the ability to work. Excruciating pain and poverty have kept me from smiling for so long, but this changed recently when one of my sons got married. Nurses from the hospice, who are like members of my family, attended the wedding with me and brought back my smile.
“Some hospice staff also offered my daughter a temporary job in the hospital. This helped to alleviate our financial burden a bit and took away some of our headache.
“I realize that the line is thin between optimism and pessimism. Miracles may seem impossible, but now I have hope.”
An Apocrine (sweat gland) cancer patient from Xinjiang, China
2.A journalist’s perspective—Lives may be shaken by misfortunes, but dignity shall never be lost
To produce the most impressive stories, journalists need to see in order to believe. Shenzhen-based journalist of Jiankang Daily (literally Health Daily) Mr. Yuan Xin joined a medical team of a hospice for a home visit to get a glimpse of the team’s interaction with terminal cancer patients. He was touched. Despite his more than 20 years as a journalist, he was emotional and the experience stuck with him for days afterward.
“I joined a team from the hospice of Shenzhen People’s Hospital and visited some patients. In the journey, I heard a doctor utter several times: ‘Lives may be shaken by misfortunes but dignity shall never be lost.’ I learned that the mission of a hospice is to ease the agonising pain of the terminally ill, reduce their torment, and allow them to live out their remaining days with dignity.
“The first elderly patient we visited had a high fever. The medical team immediately sent her to the hospital for emergency care. I saw for myself the critical yet uncertain moment when the patient was wavering between life and death. I could feel the close bonding among the patient, her family members, and the medical team.
“Then we were with the family of a 71-year-old woman whose husband and daughter are both cancer patients. ‘I have everything ready and I am not scared,’ said the woman, demonstrating her tough character and optimism, which contrasted with my grief.
“Despite my more than 20 years as a journalist, I was so moved that even a few days after the visit, I could not let the emotions go. I witnessed, I experienced, and I tasted strong love and care, which ultimately bring smiles to the sick, comfort to the bereaved, and peace to the deceased.”
Shenzhen-based journalist of Jiankang Daily Mr. Yuan Xin
3.Hospice staff’s perspective—Keeping the sadness to ourselves
a) Dr. Li Erzhou has been working in the Department of Radiotherapy for over 20 years. He became troubled by the practice of rejecting terminal cancer patients for treatment to make room for those with a hope to recover. Ms. Chen Chuanna, a nurse who works in Chaozhou, felt bad seeing patients receiving chemotherapy forced to terminate treatment halfway because they did not have enough money.
In short, feeling helpless for patients is unbearable for healthcare professionals.
Dr. Li and Ms. Chen joined the hospice programs when Shenzhen People’s Hospital and Chaozhou Central Hospital first rolled out the services last year. They were thrilled to have found a new way out for patients who have been ‘knocked out’ of the system.
“A patient told me that when he paid to get medical treatment, he was treated apathetically. It was hard for him to believe that when he could not even afford to pay for medication at the hospice, there were people out there who cared so much about him. He said that even if he could not recover, he was happy,” recalled Ms. Chen.
The patient later passed away.
“This time, we did not have to give up on the patient. We walked the last journey with him until the end and let him rest in peace,” she said.
b) Dr. Cao Weihua, a physician at the First Affiliated Hospital of the Shantou University Medical College, and Dr. Wang Xia, a physician from the Tumor Hospital of Xinjiang Medical University, were handpicked to develop hospice services at their two respective hospitals.
Dr. Cao was happy to embrace the challenge but did not know where to start.
“I have not received any training in pain alleviation or psychological counseling, but I have a heart to serve. My colleagues were largely unsupportive and advised me to return to clinical practice,’ said Dr. Cao.
Dr. Wang also kept thinking of leaving in the first half year. Finally, it was the two doctors’ patients—the targets of their service—that made them stay.
“A good-looking 24-year old artist had a tumor right on his face. His look was distorted and the wound festered. He was depressed and didn’t want to talk to or see anyone,” said Dr. Wang. “We visited him and lessened his pain with painkillers. We did all we could to cure the tumor and try to cheer him up. The disease might have been incurable, but every time we saw him, he tried hard to put a smile on his face.”
The patient later passed away. Dr. Wang clearly still remembers his smile. She believes hospice care is a vital type of work for patients, and since then, she has not thought of leaving.
The introduction of hospice care, a relatively new concept on the Mainland, is gradually changing the misperception that hospice care offers no sense of satisfaction to medical professionals and that pain alleviation and psychological counseling are less critical than clinical and medical care.
4.A patient’s perspective—A gift for my daughter
“I fell ill when my youngest daughter was only four. Every time I leave for the hospice for treatment, she invariably hugs my legs and cries out. She is scared that I have to be hospitalised and will not come home for a few days.
“I toured Disneyland with my daughter during a family outing which was probably the last, despite having to walk with great difficulties. I wanted our family to be seen as ‘normal,’ with no difference from other ordinary families, so I refused to use a wheelchair. My husband and my son massaged my swollen legs, making my task easier. My daughter was overjoyed that I had toured the park once with her.
“Counselors at the hospice taught me how to talk to my daughter and prepare her psychologically for the worst.
“ ‘Mummy wants you to do good when you grow up. I will watch over you and keep you. If Mummy isn’t around, Dad and brother love you all the same. If you miss me, talk to the dolls and it is like talking to me,’ I said to my daughter.
“I may not be able to share my daughter’s journey as she grows up, but I have left her a precious gift—a real example of rising to challenges in life with bravery and fortitude. ”
A cancer patient from Hong Kong
5.A hospice staff’s perspective—Seeing off a 28-year-old young man
“Twenty-eight years old—it is an age signifying youth, drive, hope, and a beautiful life ahead.
“A 28 years old patient, an only child, stood 6 feet tall. His life changed tremendously after he developed cancer. He lost the ability to take care of himself, and his parents had to give up their business to take care of him.
“His mother told me during a home visit：‘I finally succeeded in persuading my son to undergo chemotherapy, and the next step is just to raise the money. But now his health conditions are so bad that he is no longer fit for treatment,’ she said, weeping with emotion. I listened, comforted her, and offered support.
“My patient revealed a secret to me one day. He said: ‘I didn’t blame my parents for not allowing me to join the police force. Nor did I feel angry when my girlfriend parted with me. And in fact, I feel blessed that my mother is so tolerant of my temper since falling ill. I am planning to take my parents for an in-flight meal flying first-class. My god-sister will help me arrange it,’ he said.
“When my patient rested and recuperated at home, my colleagues and I provided pertinent care. We encouraged him to pick up his hobbies again and cherish the time he had with his parents and friends. We also boosted his parents’ confidence in taking care of him and handled their uneasy emotions.
“His health deteriorated. The idea of having an in-flight meal in first class met with obstacles. But my colleagues managed to help arrange a surprise party to let him extend his final thanks to his parents.
“Bidding a 28-year-old young man farewell brought sadness and difficulty. But it provided an opportunity for reflection. Have we cherished the relationships with our families? Have we provided the same degree of love and care to patients aged 82?”
6.A hospice volunteer’s perspective—Glorious beams despite a setting sun
“At the age of 71, I volunteered at the hospice centre of Queen Elizabeth Hospital. Through hospice service program training, I learned about the needs of patients with terminal illnesses.
“My service targets are terminal cancer patients receiving comprehensive Social Security assistance. I act as a bridge among frontline medical staff, patients, and their family members, ensuring that the patients receive holistic terminal care in addition to medical care. I listen to them and hear them share their feelings.
“I stand by dying patients and accompany their anguished family members until the last moments. I help arrange funeral services with patients’ family members, make home visits, and phone calls afterward until the bereaved can pick themselves up again.
“I feel good being a hospice volunteer. It brings me positive energy. Serving the most desperate in society is the beginning of the last important leg of my life. I am determined to serve the terminally ill and bring light to their final journey.”
A hospice volunteer at Queen Elizabeth Hospital, Hong Kong
