Hospice provides a dignified end to life
The approach, which emphasizes patient comfort and quality of care, is gaining traction in China. Zhao Yimeng reports.
After spending 15 days at her mother’s bedside in a hospice care ward at Beijing Haidian Hospital, He Zhu urged the medical workers to continue using drips and injections to relieve the pain the senior was enduring from bile duct cancer.
In August, her mother, Bai Ling, was prescribed antispasmodic drugs, which blocked excessive muscle spasms and mitigated her suffering during her last days. The drugs helped keep the 67-year-old terminally ill patient in a semicomatose state.
Having been told that Bai would die within a week, He swapped places at the bedside with her father and headed home to get some rest. She didn’t expect her mother to die less than 24 hours later.
When the 40-year-old returned to the hospital the following day, Bai had stopped using the drugs and her blood pressure was falling constantly. A few hours later, He’s mother died with family members standing around her.
“I was quite calm at that moment because I had done everything I could and I regretted nothing. Saying goodbye was just the last step,” He said.
Her mother made the decision to end her days in hospice care, which focuses on alleviating pain and attending to the patient’s emotional and spiritual needs as death approaches, prioritizing comfort and quality of care rather than treatment to prolong life.
“My mother stipulated three things: she rejected excessive treatment; she was not prepared to enter the intensive care unit; and she refused to be put on a ventilator,” He said.
Qin Yuan, director of the hospice care department, approved Bai’s admission after hearing about her stipulations. “She was exactly the kind of patient we want,” she said.
The department is wary of receiving patients who are unable to accept their prognosis and are determined to fight to the last breath, because they can’t grasp the concept of hospice care and are not suited to the department’s services.
There are only seven beds in the department’s three wards, so Qin carefully oversees the admission of every patient. She has to be satisfied that every newcomer has freely chosen this approach to end-of-life care and has not been subjected to family pressure.
Qin told He that not every family is able to reach a consensus on the patient’s final treatment. It is not unusual for some family members to disagree with the patient’s wish to end their days in the hospice, or sometimes the family is keen but the patient is unwilling.
Positive attitude
In fact, Bai’s calm and relaxed approach to impending death won the admiration of the department’s medical professionals and social workers. One commented, “Only when you love life can you see death so thoroughly and so clearly.”
Even He was surprised by her mother’s positive attitude toward the illness and death. Fearing that Bai would be distraught at the cancer diagnosis, she hid the truth from her mother for a whole year, telling her that the tumor was benign rather than malignant in an attempt to help her relax during the long months of treatment.
“However, when I got a report about the full spread of the cancer cells around her body, I thought it was time to be honest with her, as things could be better arranged in advance if she knew the facts, and she was entitled to know them,” He said.
“I was crushed and I cried because I couldn’t imagine how huge the blow would be for her, but mom didn’t shed a single tear; instead, she comforted me and helped me accept the situation.”
She was ignorant of hospice care when she started looking for a “final place” for Bai in May because the concept is not well-known in China, although it is a staple of Western medicine.
At the end of July, Bai was admitted to the Haidian hospice care department, which He had read about online. It was the perfect destination as it fulfilled the wishes of both mother and daughter. “When people approach death, physical pain is only part of the suffering. I witnessed the various pains my mom endured in her last days. For instance, she couldn’t lie down because the pleural fluid in her lungs wouldn’t drain away, which would cause an abnormal buildup of fluid in the abdomen,” He said, adding that the process was torture for both Bai and her family members.
She said her mother agreed to use the antispasmodic drugs so she would feel more comfortable in her final days. “I remember she embraced me and said ‘Mom loves you’ three times when her mind was clear during an interval in the injection (process),” she said.
During Bai’s 15 days in the department, medics, social workers and a volunteer group cooperated to ensure her stay was as comfortable and pain-free as possible.
In such situations, nurses dispense medication to control pain, auxiliary workers provide professional services including massage and music therapy, while psychologists sometimes offer counseling to both patients and relatives.
Volunteers undertake a variety of roles including sitting and chatting with patients, accommodating their end-of-life needs such as having their hair done so they feel good, and helping them and their family members adjust to the circumstances.
A vital role
Zhang Wei, the leader of the volunteer group, was one of the three founders of the hospice care project.
She said the volunteers’ work is simple but vital because they sit with the patients and help them through the process of expressing thanks, apologies and love, and saying goodbye to their loved ones.
“When people know they are dying, they shed all their roles, social and professional. When people can no longer shoulder the roles of say, a boss or a homemaker, they express their deepest thoughts and feelings,” she said.
To aid the process, the volunteer group has introduced an activity called “The Time Album”, in which the patient uses photos and other objects to remember important events and people, and recall memories from different phases of their life.
“Some people may think they are worthless to society because they are severely ill and will die with nothing. We endeavor to help them regain their self-esteem,” Zhang said.
The volunteers have witnessed cozy family reunions as well as touching scenes of reconciliation between patients and their loved ones.
“Most people experience regrets in life. During hospice care, we try to help patients make up for such feelings, such as fixing long-broken relationships between couples or siblings. Sometimes, they need a motive to speak out, to say ‘thanks’ or ‘sorry’, and we support them to heal the scars so they can bid farewell to the world in peace,” Zhang said, adding that the process can be mutually beneficial.
“Those lying in bed use stories from their past to inspire us and show us how to live good lives.”