A good end, a good farewell, and a good living

June 23rd, 2020 in International News

Palliative care reflections in the COVID-19 pandemic

Authors: Xuying Li, Yongyi Chen, Boyong Shen, Xianghua Xu
Institutions: Hunan Cancer Hospital

In the late spring, flowers are like brocade, the sun is shining. During the vigorous spring which is full of warm, the cold has passed away! Nothing can stand in the way of spring! But this winter and spring transition in 2020 is destined to be forever engraved in the hearts of all people, becoming an untouchable pain.

The novel coronavirus raged all over the world in hard times. From February 11 to March 22 this year, I had led totally 16 medical health care professionals in the Hunan Medical Team supporting Huanggang City in Hubei Province in China. We were mainly responsible for the treatment of COVID-19 patients. Most of the team members were assigned to the intensive care units. Patients in these areas were in severe and critical condition. Some of them even had no chance to have a farewell with their loved ones before dying. What’s more, in order to avoid transmission of infection, they were immediately put into the body bag for cremation. Their family members couldn’t see them for a last glance. What a pain which cannot be healed for a long time. I often think, as one of the palliative care workers, what can I do for my patients facing inadequate preparation and limited conditions? How to help the terminally ill patients say apologies, gratitude, love, and goodbye to the people they care? How to achieve a good end, a good farewell, and a good living that palliative care advocate?

There was an old lady lived in the ICU, who developed respiratory failure combined COVID-19 and heart failure. She had experienced three rescues and was pulled back from the brink of death each time. Occasionally she woke up, opened her eyes, looked at me, and stared outside the window. I understood that for her, the unfamiliar surroundings, no family’s company, medical staff wearing layers of protective equipment made her afraid and lonely. Considering she was unable to speak on a ventilator, I asked her to express her needs with winks. When I asked her if she wanted a video with her family, she closed her eyes deeply. Then I took the department’s dedicated mobile phone, videoed on her daughter. I told the daughter that her mother’s waking time was less and less, I hoped she could seize the opportunity to talk with her mother and express apologies, gratitude, and love to her. Daughter cried out gently: “Mom, due to the isolation requirement, please forgive me that I can’t do filial piety at your bedside, I will take good care of my brother and maintain a good family order. Your lifetime is toil and did not enjoy a few days of happiness. I feel so regrettable that I often make you angry inside. Please do cooperate with the treatment. We will wait for you forever.” The patient closed her eyes with tears slipped across her face soundlessly.

Two days later, the patient’s heart rate and blood pressure dropped with the blood oxygen couldn’t be measured. She lost her consciousness and was in a coma. The doctor telephoned her daughter once again, told her that it might be hard to save back this time. The daughter said that her mother believed in Buddhism, hope the health care workers could find the bodhisattva’s red rope which was kept in her mom’s duffel bag. She hoped this red rope could be accompanied by her mother until the last moment. I found the red rope and wrapped in the wrist of the patient. The video was linked to the daughter and other family members, her daughter began to cry at the moment. As a nurse expertise at palliative care, I knew it was time for the family members say goodbye to the patient. I reminded the daughter that her mother could still hear what happened although not able to express. Her mother would be fearful and worried if they kept crying. The daughter understood what I meant, and let all the family members said a few words to the patient through video. Finally, the patient passed away in everyone’s memory peacefully. The daughter requested that according to the local custom, she wanted her mother grabbed some money in hand at the last moment, which will be decent. We wiped the body of the patient with water and disinfectant twice, combed her hair, changed new clothes for her. We found 10 RMB in the belongings of the dead and put it into her hand. After the death of nursing, we connected the daughter again. Her daughter tears were streaming down her face and she thanked us through the video when she saw her mother’s tidy hair, serene countenance, clean clothes, as well as the money holding in the hands. She extended her gratitude for all we had done for her mother in this particular period. A brief funeral was arranged. Paramedics bowed collectively to the patient three times with her favourite Buddhist music downloaded online. I burst into tears when the undertaker’s workers transferred her to the funeral home. I said in my heart silently, “There is no pain on the road to life grandma.”

The implementation of palliative care is never a single kind of thought, nor should be only one mode, but should be based on human nature combined with the actual situation, adjusting measures to local conditions and varying from person to person. In Chinese traditional culture, it is a taboo to talk about death. The sudden epidemic of COVID-19 doesn’t give any psychological preparation to a lot of patients and their family. Numbers of patients had to cease their happy life abruptly and passed away without dying words for their loved ones. For infection control considerations, their family members couldn’t company the patients, which will be the lifelong regret and guilt for the deceased’s families.

Under the global pandemic of COVID-19, the work of palliative care has the work of hospice care has changed. Online communications could be utilized for the family meetings, group consultations, the family visits to reduce regrets between the patients and family members. We could adopt online psychosocial interventions not only to comfort the isolation of emotion but also let the families participate in the patients’ treatment, understand and fulfil the patients’ last wishes. In this process, the medical staff has become the ties between the network platform, patients, and families. Although there are many alternatives for an in-person meet, medical staff is still the biggest source of support for patients and their families. When everyone is scared of COVID-19, in addition to trying our best to rescue patients, all health care workers should do our best to let the deceased rest in peace and reassure the living. In the midst of life and death, it is the shining light of humanity of palliative cares that giving life a warm ferry!