Healing the Heart Must Begin Early
Two days ago, the wife of a 38-year-old patient with mid-to-late-stage lung cancer came to Beijing to see me; before she could speak, tears were already running down her face. The PET-CT report showed that the lung tumor had metastasized to multiple lymph node sites throughout the body, with suspected bone metastasis. The primary lung lesion was not actually especially large, but there were very many metastatic lesions. Every doctor she had seen had told her the prognosis for her husband was poor.
Faced with such a patient, the medical system can only follow the routine process. Busy doctors have no time to care about the joys and sorrows of patients and their families, nor does anyone care about the family's financial circumstances; they simply keep writing new test orders, and the family's money pours out.
The wife had known of me for some time; she believed I could guide her in making the best choice, which is why she came specially to see me. I asked how many children they had; she told me two, one in kindergarten and one in primary school. I asked about the elderly in their family; she told me her parents-in-law had been in a car accident not long before, and although they had barely escaped with their lives, they were severely disabled.
Her future life was actually not hard to imagine: she would very likely lose her husband before long, have to raise two children alone, and care for two disabled elderly parents. Their income was limited, while cancer treatment is a bottomless pit; any amount of money might be spent. If they threw themselves into treatment regardless of cost, they would surely lose everything, even fall deeply into debt. Once the patient dies, the children's upbringing will be a major problem.
As I reviewed the patient's various examination reports, I kept thinking: how to comfort the wife, and how to give this unfortunate family the best advice and, without wounding their dignity, reduce or waive my fees.
I could feel the grief in her heart, and could imagine the bewilderment, anxiety, pain, and guilt she would feel in making each decision; I could also feel the struggle within her as she paid the hefty examination and treatment fees at the hospital. Because I have been through all of it myself. Her pain, helplessness, and grief were written on her face; in the days ahead she will endure still more torment. If her husband dies, she and her children will face a long period of rather hard living.
Because the pathology report had not yet come out, I could not say how this patient should be treated. But by the time the disease has progressed to this stage, there are not many options: chemotherapy, radiotherapy, targeted therapy, immunotherapy, and TCM treatment. Whether to do targeted therapy depends on the genetic testing report. If medical therapy can downstage the disease, there may still be a chance of surgery.
Most of these treatments are expensive with limited efficacy; as everyone knows, the prognosis for mid-to-late-stage lung cancer is very poor. Behind every patient is a family, even an extended family. At this moment, all the relatives who know his condition may already be contacting doctors on all sides, asking what to do next, and each doctor will give a different opinion.
I explained to the patient's wife in detail the meaning of the imaging reports, blood counts, tumor markers, pathology report, and genetic testing report, and the role each plays in formulating a treatment plan. I also told her the common types of lung cancer, which types require genetic testing to determine whether targeted drugs are available, and which types get little benefit from genetic testing—all of which can be judged once the pathology results are out. At the same time, I told her that if a doctor recommends immunological agents such as PD-1 or PD-L1, how she should search Chinese and English literature (the wife's English is very good) and judge from the literature whether to accept PD-1 or PD-L1 treatment.
She would be the final decision-maker among the various medical options. I told her how, in the decision-making process, to learn like doctors to seek evidence-based medical evidence and make choices with her own reason, rather than being driven by emotion or hijacked by outside pressure and information that is hard to distinguish as true or false. Deciding this way reduces misjudgments and also reduces later guilt.
Many patients' families, including my own, after making medical decisions, feel self-blame and guilt, especially when the patient's disease progresses. A medical doctor who specialized in targeted drugs once told me, after a family member developed cancer: as long as the outcome is bad, whatever regimen we chose, we families of cancer patients will all feel guilty, as if our misjudgment caused the poor outcome. In fact, treating cancer rarely has a perfect plan; guilt is simply the normal emotional reaction of families.
I also told the patient's wife that if she is thinking of her children and elderly, it is not wrong to forgo some expensive treatments with weak evidence-based support (such as imported immunotherapy drugs); she should not put too much psychological pressure on herself. I recommended to her the book Zhuangzi Xian Dai Ban (A Modern Version of Zhuangzi) by Mr. Liu Shahe, and told her about Zhuangzi's inner journey when his own spouse died; I also recommended several other books. These books are well suited to people who have suffered life's setbacks; I hope she will not break down in the long road of life ahead.
This year marks my twelfth year formally in the medical profession; my life's course changed dramatically because of my mother's death from cancer. I shared with her my own inner journey in adapting to this change, telling her how I got through the last years of my mother's life and her final moments, and how I made my choices.
The conversation lasted over three hours. By its end, the wife understood the relevant knowledge of lung cancer and the pros and cons of the various treatment options. I charged only a symbolic fraction, less than one-sixth of the fee; charging nothing would have made the family too uneasy, and they would not dare come to me again when they needed help next time—I encounter this situation often.
Since I began clinical practice under my master, I have seen too many bewildered patients and families. For patients and families who have just heard the bad news, I now do my best to help them sort out their thinking, calm their emotions, and guide them to use every available body of research data to make choices. I also anticipate the psychological difficulties they will face, give them advance warning, and guide them to better cope with future pain and confusion. That is why a first meeting with a patient and family sometimes takes so long.
Sometimes, by spending a little more time helping a patient's family sort through things and calm their emotions, what is saved is not just the patient but the whole family. Some people compare cancer to a death sentence; in my view, cancer is crueler than a death sentence. A death sentence may still earn a suspended reprieve; those who cannot get a reprieve at least have a set execution date. Cancer torments people more than a death sentence: it makes the whole family suffer long in the anguish of fearing death, while a faint sliver of curative hope often strips the family's wealth bare.
Cancer even leaves families unable to recover long after the patient's death; grief, self-blame, and regret intertwine, leaving them often weeping. If the practical hardships of life also torment the family at this time, that family's suffering will not end quickly.
I have been through all of this myself. I do not believe my words can completely remove the psychological pain of other families—the emotional reaction when one is actually in the midst of it comes from biological instinct and is hard to avoid. But I know that some of my guidance to families can more or less ease their inner pain, and the books I recommend can accompany these families, who have suffered life's setbacks, through many long nights ahead.
Although people's joys and sorrows do not truly communicate, in certain special situations those who have been through the same thing do share much resonance. There are always words that let us know we are not alone. We draw a little warmth and light from those words; when we walk on in coldness and darkness, that warmth and light from strangers keeps our hearts from hurting quite so much.
I have met many people sunk in spiritual pain they cannot extricate themselves from, and I always feel sorry for them. I think that if, before these people's long spiritual torment, someone could have given them some guidance and told them how to cope with life's hardships, perhaps they would not have fallen so low. Healing the heart, too, must be done early; once the emotions have reached an extreme, it is hard to turn back.
I often feel I am a particularly lucky person. When I was in high school, my teachers opened my horizons and let me read all kinds of spiritual and philosophical works. These books I read have nourished me at different stages of my life, enabling me to quickly find release no matter what setbacks I encounter. I once greatly admired Su Dongpo, thinking his equanimity rare in the world; now I can look him in the eye as an equal, because what he could do, I can do too, and so it no longer seems so extraordinary.
To have a teacher who opens the windows of the soul in one's youth and forges a soul not easily destroyed—truly a stroke of luck. Blessed people are always willing to share a little of their blessing with others; so now, too, I am glad to light a lamp for others as they slide toward the abyss of pain, so that they need not suffer endlessly in the dark.