Never Too Late!

As an oncologist who has treated cancer patients for nearly twenty years, I can say that the part of treatment I find most difficult is "managing the dying process". I must also say that, beyond the medical treatment we give, what challenges me is managing a relationship between patient and family that becomes detached from reality, a kind of fiction. We feel helpless when faced with irrational family expectations we cannot meet, concealment of the dying process from the patient, and the family's constant efforts to convey the feeling that the patient will recover. Across our country, I see this process operating similarly, with communication between physician, patient and family becoming almost chaotic.

Looking back over the past 20 years, in our country, patient-physician communication has changed positively. Before the two-thousands, telling a cancer patient that they had cancer was almost impossible, whereas today families often regard discussing cancer with the patient as normal. I think major advances in modern cancer treatments have contributed to this change. Before the two-thousands, two out of every three cancer patients died; today, with advanced diagnosis and treatment, this has become one in three. Despite these positive developments, unavoidable cancer-related deaths will remain one of medicine's most important problems.

In our country, the dying process in cancer patients is not discussed, is ignored, and is managed according to traditional, family-centered expectations. We must say frankly that patients themselves and their expectations are overlooked and, above all, ethical boundaries are severely worn down. We need to understand that the dying process in cancer can be managed better, allowing patients and families to say goodbye in a dignified way. I also think it is time to accept that knowing one is dying and having the opportunity to express final words and wishes is a universal right.

I think it was 6 years ago. During a routine ward round, my English patient Suzi, hospitalized with breast cancer, called me over and asked me to sit beside her. I had treated Suzi for more than four years with metastatic (stage four) cancer. She lived alone in a coastal town near Antalya. She had exhausted all treatment options, and disease progression had limited her physical functioning. She took my hand, looked at me lovingly and said, "I know you have done everything you can for me, and I am grateful to you as my doctor. Now I will ask one final thing. You must be brave and tell me how much time I have left. My dog is waiting at home; I need to find a safe family for it. I want to write my final message and wishes to my friends in Australia, say my final words to my family, give my possessions to dear friends and people who helped me, and plan my funeral." Suzi already knew her time was short, but confirmation from her doctor mattered to her. Perhaps it was the beginning of acceptance…

In the remainder of this article, we would like to share a translation of "Never Too Late", published in November 2018 in one of oncology's most respected journals, the Journal of Clinical Oncology, a piece that may make us say, "our problems are similar too".

Never Too Late

In traditional Chinese culture, birth has great importance, while death inspires great fear. Some attitudes even belittle or disparage death. Death is a taboo topic in China. Some people believe talking about death accelerates it or even causes it. People in China rarely visit cemeteries because they fear attracting bad luck. Families experiencing a death are temporarily excluded. In Chinese, four the word, death has the same pronunciation as the word for it. Therefore, the number 4 is avoided in apartment floors, telephone numbers and license plates (also known as tetraphobia ). Similar death taboos and attitudes occur in Asian countries such as Japan, Malaysia, South Korea and Singapore. This positioning of death creates a major problem, particularly for cancer patients nearing the end of life. Patients and families lack communication and do not discuss the expected death. My experience as an oncology nurse has shown me that loving communication between patients and families greatly improves terminal care.

When I First Saw Her, She Wore a Blue Gown. She Was Alone and Asleep.

Her clinical history read: "46-year-old woman, breast cancer for more than a year. Right breast mastectomy performed, with cirrhosis and acute liver failure."

Her doctor whispered that her current condition no longer permitted systemic chemotherapy . As I approached the bed, she opened her eyes. Although she looked very tired, I could see she was trying to speak and express herself.

• "Hello."
• "Hello, I am your nurse. How are you feeling today?"

After talking for a while, I learned she was an accountant and her husband ran a small business. They had no children. Her husband was at the hospital all day, caring for her. Her father had died, and her mother was over 90 and cared for by her older brother. Following Chinese cultural convention, the mother had not been told of her daughter's advanced illness. When I asked the patient whether she had any problems, she said she worried about her husband. She also worried about her mother.

Later, I returned to the room. Her husband stood beside the bed. I saw a sturdily built, sad middle-aged man wearing a white T-shirt and dark gray jeans. He was very stressed mentally and physically. I invited him outside to talk.

• "Yes, the doctor told me she does not have much time left" he began.
• "Does she know how serious her condition is? Have you told her?" I asked.
• "No, I could not tell her" he replied.

I realized then that neither the patient nor her family was prepared for the expected death. In China, families of cancer patients had replaced medical staff in communicating information. Cancer patients in China rarely went to hospital alone.

• "I know this is difficult for you." I continued.
• "Yes, lately I cannot sleep. It is very stressful. I do not know whether not telling her is right." he said, his eyes filling with tears.
• "You worry that when you look back on this time, you will have regrets, do you not?" I asked.
• "Yes, I make all the decisions. At my age, I no longer say I love you, but at home at night I feel very empty." he said, suddenly sobbing and unable to say more.

After a brief silence,

• "We should all hope that she has no regrets or worries and lives her remaining time in peace".

Her husband nodded and

• "I hope so too" he said, becoming silent again.
• "Have you thought about her feelings? If she does not know her current situation, she may not be able to share the things she wishes to say. Perhaps she is fighting her fears alone." I said.

I saw him become thoughtful again.

• "I know this is not easy for you. We can discuss less frightening ways to explain the situation, or we can tell her for you." I suggested.
• "You are right. I should tell her." he murmured. We then discussed her medical condition, concerns, wishes, and treatment-related and other matters. He promised to talk with her that evening.

But he did not keep his promise. He was still not ready to give this terrible news to the wife he loved so much. As expected, her condition worsened. She suffered a cerebral hemorrhage (brain bleeding), leaving her numb and unable to speak. Time was running out.

The next morning, the patient went into a coma. The doctor explained her condition to her husband. I stood beside him as he murmured to himself,

• "Now she is in a coma. It is too late."
• "No, it is not too late. Perhaps she can hear you." I replied. "Some research suggests that hearing is the last thing to be lost." I encouraged him.
• "Really? Now I know what to do" he said, and did it. He sat beside her, held her hands and began whispering in her ear.

It seemed that she heard him and understood his words. The man began to cry. He picked up the phone, played her favorite music and continued talking to her.

Through the glass window, I watched her heart rate slowing on the monitor. Holding her husband's hand and listening to his kind words, she died peacefully. I went inside and hugged him for a long time. He told me he had said everything in his heart to her. He said he had told her not to worry about her mother or him.

I could see tears falling. At that moment, I thought of my grandmother. 10 years earlier, in the early years of my nursing career, my grandmother had died from esophageal cancer . My family, aunts and other relatives had concealed her illness until its final stage. They had led her to believe it was benign. I will never forget her helplessness and fear as she died. She had been forced to die without exercising her will or saying goodbye. Because we could not communicate emotionally in her most difficult time, we did not know what she was thinking. This experience led me to advocate that patients' families should approach death more openly.

We All Fear Death

However, how to face death and discuss it with those closest to us is unfortunately a cultural taboo in Chinese society. I often wonder why people in China fear death so much. Perhaps it is because the afterlife is portrayed as terrifying and described as governed by demons. Heaven is described as being only for saints and inaccessible to ordinary people . If death is portrayed as frightening and terrible, fear is natural. Ancient and modern Chinese rulers have in fact expended great effort searching for immortality, influencing Chinese attitudes toward death. By avoiding discussing death with patients, we prevent them from exercising their right to choose treatment and express how they want to live their final days. We also unnecessarily burden caregivers who repeatedly take elaborate steps to conceal diagnoses. We cause patients' families grief and regret. They mourn not only the patient's loss, but also the loss of intimacy with the patient , because emotionally connecting conversations never took place.

Avoidance of Death Is Not Unique to China

It has also affected first-generation immigrants from China, Japan, Korea, the Philippines and other Asian countries. It has further affected increasing numbers of doctors, nurses and technicians treating them in the West. How can we help Western doctors persuade Asian families to discuss death? I offer 3 solutions: Understanding, communication and education. While understanding the culture of death taboos, insisting on open communication among families, patients, doctors and other medical professionals may improve end-of-life care quality. Educating medical professionals in Western countries about Asian death taboos is the first step toward open communication. Communication can provide better end-of-life care.