Weekend Long Read: Terminally Ill Patients Need More Than Medicine
He asks about death like asking how you’d like your cup of tea. “Let’s imagine death for a moment. At what age would you like to die?” Dr. Lu Guijun asked me with a smile. “In which season? Who do you hope will attend your funeral?”
I said I’d rather die in my 80s.
“Autumn would be the best, when it’s not too hot and not too cold. In the south, the trees are still green,” I said. “By that time, most of my friends may have passed away as well. But I hope that at the end of my life, my cousins and one of my best friends can come to see me.”
The conversation makes it clear that most people, although unable to predict the time of their death, have expectations for their last moments and the funeral. Having spent much of his time at the bedside of dying patients, Dr. Lu knows it better than many.
Dr. Lu specializes in pain management. In 2019, he established the department of pain treatment at Beijing Tsinghua Changgung Hospital. They provide palliative and hospice care to terminal tumor patients, accompanying them through the last moments of their life.
Shortage of hospice care
In early February of this year, singer Zhao Yingjun was admitted into Dr. Lu’s ward. Prior to admission, a doctor had visited Zhao’s home and found that he was having difficulty in breathing. The doctor asked him, “Do you feel as if every gasp of air is your last?” Upon hearing that question, Zhao looked up at the doctor, tears gently falling, and said, “You understand me.”
Zhao was greatly relieved to receive hospice care, as he no longer felt any pain. He requested sleeping pills to ease himself to sleep. But the doctor was worried about the effect of taking the pills, that Zhao might not wake up again. But Zhao responded, completely at ease: That’s exactly what he wanted. Zhao was given the sedative and fell asleep. After waking up, he made one last joke to the doctor: “It seems the dose wasn’t high enough.” Soon he fell asleep again, this time never to wake up. Zhao spent the last 48 hours of his life in this ward.
But not everyone is able to access the care that Zhao did.
“I saw a statistic that in 2019, China’s total mortality was 9.98 million, but only 0.3% of those people received hospice care. So, obviously, there’s a huge coverage gap,” Dr. Lu said, acknowledging that a large number of patients are unable to reach him despite being in need of hospice care. For example, those who have no family or friends around to help them also usually fail to help themselves, let alone find access to professional hospice care.
“Beijing is such a big city, and it’s not like a dying person can just walk out of the door. There’s no way for them to find me.” But elsewhere, the situation may be even worse. “Every year I go to places like Dehong in (the southwestern province of) Yunnan or Yushu in (the northwestern province of) Qinghai, where I see so many ill people living in terrible conditions.”
Dr. Lu believes that policy support is indispensable to resolving the acute shortage of hospice care. Market-oriented methods are not effective in expanding hospice care coverage. In the current medical care system, incomes of hospitals and doctors are linked to specific treatment plans. “But if a patient has already reached the stage of hospice care, they don’t need surgeries or other big-ticket treatment items. So the hospital cannot gain much profit from that patient’s hospitalization.”
Dr. Lu wrote some of his experiences in Witness to Life and Love (见证生命，见证爱), a book which explores issues most of us tend to avoid: pain, hospice care and death education.
Everyone will die. “Death from cancer may be a kind of blessing. With heart or cerebrovascular disease, you never know when it might kill you. You may be gone in an instant, without any chance to prepare,” Dr. Lu told me.
“Such patients may suffer less pain, but many of their wishes are left unfulfilled, so it is harder for them to find peace, which in turn can cause more grief to the family. But with a cancer diagnosis, there’s half a year to prepare for death, when families can accompany them properly and they can fulfill final wishes.”
Death is a taboo topic in many societies and China is no exception. Most Chinese people receive no education on life and death. It is difficult for them to face their own mortality or that of their loved ones.
However, some questions need to be answered. “What does it mean to be ‘near death’? Should we always tell our elders the truth about their physical condition? How can we be there for a relative whose countdown has already begun? How can we face the death of a partner?”
Whether a person can die with dignity depends on their doctors, family members and even society, including the general public. Compassionate care providers understand and respect individual differences. For example, although pain levels can be graded scientifically, the experience itself varies from one individual to another.
“Bearing one’s pain is traditionally regarded as a virtue. Some people don’t even understand why women take painkillers for painful menstruation, or hope for a painless delivery,” Dr. Lu said. “These people have obviously never experienced the pain of childbirth. They tell a woman giving birth to just endure it because it is a process that so many women have to go through.”
“But a woman who has given birth will never tell another woman in labor to just ‘bear the pain.’ If you don’t have a clear understanding of the pain, you are not qualified to question it.” The same logic applies to an understanding of death, he said.
The cover of “Witness to Life and Love” by Dr. Lu Guijun
More than a fight
It was many years ago when Dr. Lu overheard a conversation. Some doctors and nurses on the night shift were complaining about a terminally ill patient who might hold out until the early hours of the morning, rather than dying earlier that night.
For Dr. Lu, their indifference was not simply the result of work exhaustion or the familiarity with death that abounds in any hospice ward. Their attitude also had to do with a hospital culture that had been slowly building over the years.
In China, doctors are traditionally glorified for struggling against death, Dr. Lu explained. “That is where their profession gives them a sense of honor — when they can treat intractable diseases and bring critically ill patients back to health. But when they find that they don’t know how to save a patient, that all they can do is watch that person move closer and closer to death, they become depressed, with no idea what to do.”
“Medical education in China teaches them to save people’s lives, but it doesn’t teach them how to attend to someone beyond saving.”
In Heillose Medizin, or Disappointing Treatments, German medical journalist Jörg Blech argues that while modern medicine has enormous benefits, a patient’s poor understanding of disease and insufficient doctor-patient communication often lead to unnecessary treatments.
This phenomenon is both more common and more complex for patients suffering from advanced-stage cancer or tumor. Although such patients know death is inescapable, they still elect to receive treatments out of a fear of death. After months of suffering and mounting medical bills, most patients die during treatment.
Dr. Lu believes this phenomenon of overtreatment is partially proposed by patients and partially imposed by doctors. If patients have sufficient financial support to receive treatment without dragging down their family members, their wishes deserve to be respected.
But, Dr. Lu asserts, doctors should never impose overtreatment on patients. “This is a moral issue,” he said. “Doctors encouraging treatment for terminal cases may be doing so for their own benefit, for the challenge of fighting death or in the hope of creating a miracle.”
“But these are all selfish motivations. Doctors should not take their patients’ medical treatment as a test of their academic competence,” he said.
Every year, about 5,000 patients visit Dr. Lu’s department of pain treatment. Their symptoms range from growing pains in case of children to gynecological agonies. One out of three suffer from terminal cancer. He asks many of them which is more important: length of life or quality of life? Most opt for the latter.
To allay their panic, Dr. Lu likes to tell new hospice patients in advance what they will experience leading up to death. Dying people first tend to lose their sense of taste, no longer craving their favorite food. Then they experience fever, diarrhea and other symptoms that cause further dehydration and reduced metabolism. Next, due to oxygen deficiency in the blood flow, they begin to feel drowsy. As periods of wakefulness grow shorter and shorter, most eventually pass away in their sleep.
During this process, doctors do not surgically intervene. They do nothing to either hasten or delay death. They merely relieve the physical pain. Apart from physiological changes, the dying also develop greater needs for psychological and emotional support. Naturally, they have many concerns about what will happen after they leave. Some patients, due to their emotions or the topic itself, find it too difficult to tell the people closest to them what they really want to say. In such cases, medical staff — strangers who are familiar to the penitents — are perhaps in the best position to listen to them or help them fulfill their final wishes.
Although hospitals within the current medical system can help patients in a physical sense, they find it hard to offer them better compassionate care. Filling that gap often requires extraordinary efforts. “Terminal patients are very tired,” Dr. Lu said. Patients often fall asleep immediately upon greeting him. He must then wait before they awaken to utter a couple more sentences, before falling asleep again. “Sometimes it takes me an entire hour to exchange just 10 sentences with a patient.”
“When there’s hope for saving a patient, doctors generally do a good job. They won’t make any basic mistakes. But once a patient seems lost, say, showing a straight line on the ECG (electrocardiogram), doctors may give up immediately,” Dr. Lu said.
Dr. Lu believes he has identified a gap that badly needs bridging in China’s medical education: death. “Otherwise,” he said, “the only thing we’ll feel before our long sleep is a cold medical environment.”
Dr. Lu Guijun
The Farewell is a film by Chinese-American director Lulu Wang. It tells the story of a Chinese family that decides not to tell the grandmother about her terminal diagnosis, but her granddaughter believes her grandmother has the right to know. When a relative is diagnosed with an incurable disease, most Chinese people are split over whether to tell the harsh truth or a white lie.
“Some patients weren’t told of their real condition, and thought they could live another year. But they passed away unexpectedly, their last wish remaining unfulfilled,” Dr. Lu said.
Dr. Lu recalled a case where a man, kept in the dark about his condition per his relatives’ decision, was unable to satisfy his dying wish — to reunite with his first love. Indeed, it wasn’t even until his family was going through the belongings he’d left behind that they came to know about his wish.
“That’s the regret of a lifetime. So what I often tell my patients’ children is, although they can make some decisions for their parents, they should also be aware that the person their mom or dad wants to see most at the end of their life might not be them, might not even have anything to do with them. The wishes of the patient and the relatives can be quite different.”
In his book, Dr. Lu documents the last moments of many people: One wanted to drink an iced latte before dying. Another died listening to Peking opera. A middle-aged man on his deathbed decided to tell his mother that, thanks to her care and company, he could pass away without any regrets.
“Patients have a desire to communicate. They’ll often ask their doctors, ‘I only have a few days now, right?’ But their doctors always evade the question, telling them not to think that way, that they’ll try a new medicine today, call in a new specialist tomorrow.” But according to Dr. Lu, people whose lives are coming to an end have more questions and a greater desire to express themselves. They want to understand the process of death. They want to depart with dignity and in company, rather than in pain and alone.
Of course, there are exceptions. Some time ago, Dr. Lu admitted an ethnic Korean patient who liked to play Go, known as “weiqi” in Chinese, and hoped that someone would play with him there in his final days. But according to his family, he wasn’t very willing to talk to people. “He had always been reticent, and that’s how he wanted to be at the end, too. He wouldn’t suddenly change his personality and seek attention just because he was dying. He was interested in playing weiqi, but he would never choose us as his opponents. So we did as he wished, leaving him alone to depart quietly. In hospice care, our principle is not to impose our idea of what’s good on our patients.”
Dr. Lu thinks it is easier to provide hospice care for the very old and very young — the elderly have lived a full life, while children have not yet formed their own views about life. When confronted with dying children, Dr. Lu uses playful language to explain death, telling them that their favorite fairy tale characters will also become angels and fly to the sky. It’s the middle-aged who have a lot of worries: unfinished careers, as well as children and parents who need to be taken care of.
In addition to comforting the patients, hospice care also takes on another crucial role — placating the grieving relatives. “Without early intervention, the sorrow of losing a loved one will stay with a person for a lifetime.” For example, to parents who are about to lose a child, he will advise them to listen more to their child and see what the child wants. “There was a child who wanted to have an Ultraman. So his mother bought him an Ultraman toy, and his father dressed in an Ultraman outfit for him. They no longer worried only about their son’s shots and medicine, and instead focused on spending quality time with him. In the future, they can take solace in the knowledge that their son was happy (on his deathbed),” Dr. Lu recalled.
On the day a child is likely to die, Dr. Lu will advise the parents to say everything they want to say to their child. “Many of them will say, ‘Mom loves you baby, but there’s nothing more I can do. I did my best.’” The words of farewell should be uttered face to face. “Love needs to be expressed.”
Dr. Lu does not suggest intentionally erasing all traces of a loved one’s existence after they have passed away to try to forget them and start a new life. “It’s impossible for us to forget our loved ones completely. Grief will stay with us. We have to slowly crush it, break it down and digest it. We can think of it like this — even though they’re not in this world anymore, they’re still in our hearts. It’s just like they’ve gone off on a long journey.”
It is a common practice for doctors and nurses to bow to the deceased as a gesture of farewell. Dr. Lu, however, does not allow his team members to say things like “there’s no pain in heaven.”
How, then, do they pay their respects? Dr. Lu stood up, smiled at me, and walked to the door of the office. “What would you say to me if I were about to leave?” “I guess I’d say, ‘see you next time!’”
“Exactly! Suppose we’re good friends, and you suddenly have to leave, that’s exactly how I’d say goodbye. So, we might tell a patient: You’ve had a hard time lately. You should really rest now. But I’ll continue to think about your concerns. We’ve talked a lot about a lot of issues, and sometime later, we’ll continue that conversation.”
Zhao Jingyi is a freelance writer.
This article was originally published in Vista Story (Vista看天下) on May 28.
Contact editor Michael Bellart (firstname.lastname@example.org)
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