Original Wang Yifang reading magazine
editorial comment/note
Diseases, especially malignant diseases, are hard to avoid in everyone’s life. The author advocates that when this happens, we should still be optimistic, and at this moment, the society should be equipped with a channel of "hospice care" to effectively improve the quality of life of patients. This is an appeal for "hospice care", which is a relatively missing part of our national medical system and deserves attention from all sides.
Welfare of disease
Wen | Wang Yifang
(The third issue of Reading in 2024)
When talking about the welfare of diseases, people will naturally bypass the disease itself and point to the miracle of modern medical care or the increasingly perfect insurance system. In fact, without disease and suffering, medical benefits will not be born automatically, and the love and care parallel to medical benefits will be eclipsed. This is clearly a kind of "paper clip effect" welfare. The initial port can be traced back to the independent reflection and collective response of diseases. If we glance into the deep well of philosophy, it is a reflection and awe of patients’ subjectivity.
Hospice Care (Source: stchristophers.org.uk)
It was an American community doctor who first made me understand this bitter philosophy. More than 20 years ago, I visited the United States. On the way, I suffered from a bad cold, fever, cough and sore throat, and I was sore all over. So, I hurried to choose a doctor for treatment. The general practitioner, who was nearly half a century old, enthusiastically accepted me. After some consultation, he didn’t prescribe medicine for me. His belief was that the common cold didn’t need to take medicine, and he humorously told me that "take medicine for seven days, don’t take medicine for a week", just take a full rest and strengthen nursing. He explained the reasons in detail. The common cold symptoms are serious but not dangerous, and it is a self-healing disease, except It also urged the patient to review his lifestyle. More interestingly, he also talked to me about "Aesthetics of cold". Although the course of a cold is not long, the patient’s identity has shaped the image of the sick and weak who are cared for, cared for and loved, won an opportunity to feel sorry for themselves (be kind to themselves), and allowed relatives and friends to fully express their love (care for others). Sure enough, during my week of illness, I was cared for by my colleagues and friends, and my heart was full of love. This also reminds me of the deep association of disease welfare. It seems that the word "welfare" can be divided and analyzed. Happiness is a blessing and a benefit. However, in the concept of China people, happiness and misfortune are interdependent, with mutual interests and full of dialectics.
Perhaps it is too common to talk about a cold, and it is not easy to attract people’s attention. If you change a cold into a tumor and change it into a malignant cancer, will you feel the same? Obviously, the mood will be heavier and more shattered. If readers inadvertently type "aizheng" on the keyboard, there will be "being punished" on the computer screen at the same time as "cancer", which means that cancer equals being punished. In susan sontag’s Metaphor of Disease, cancer is labeled as a modern devil, ranking first in the disease spectrum and death spectrum. Nearly ten million people die of malignant tumors every year in the world. For such a number one malignant disease, people avoid it, sigh, and talk about welfare. Isn’t it deliberate to find a flat? Actually, there are two sides to everything, and so are tumors. First of all, tumor is just a "different fruit" that grows after the loopholes in human immune system appear, just like the "crooked melon and cracked jujube" in nature, which is closely related to the aging process of human beings. However, a few days ago, an academic report by Academician Cheng Shujun made me feel refreshed. The report cited a group of elderly people who were over 80 years old. They were complacent and enjoyed their life, but in the autopsy, they found that 60% of the deceased had "prostate cancer", which they didn’t know before their death. This is the so-called "lazy cancer" phenomenon. Its natural growth cycle is long, even exceeding the natural life span, but it only proliferates slowly without making a mess. Therefore, a familiar oncologist often teases patients with slow progress of prostate cancer: "Congratulations, you have snail cancer." As for cancer, Academician Fan Daiming, who is the chairman of China Anti-Cancer Association, has some strange ideas. In his eyes,Cancer cells are the "revolutionary party" in the body. In the process of aging, weakness, atrophy, degradation, and even exhaustion and decline, cancer cells are changing locally, inspiring a new atmosphere of proliferation, expansion, prosperity and transfer. This is clearly a retrograde force of "rejuvenation". The problem lies in their "crazy" growth and breaking the internal ecology, which leads to physical harm.
Susan sontag and Henri Cartier-Bresson were filmed in 1972 (Source: Beijing News)
Metaphor of Disease, by susan sontag, translated by Cheng Wei, Shanghai Translation Publishing House, 2020 (Source: dangdang.com).
Unfortunately, the balance technology of connivance-controlling the growth of cancer cells has not yet come out, and more patients are tortured by crazy and barbaric growth of cancer cells and die young. This is the harsh cancer world. If so, it is obviously inappropriate for me to explore the welfare of diseases under the cruel aesthetic situation. But it’s not that no one dares to think and say. Susan sontag, who has suffered from cancer twice, is such a brave man who dares to face up to the suffering of cancer. She tells the world that it is the existence of cancer that reveals people’s "dual nationality", that is, they are citizens of the health kingdom and the disease kingdom, rather than absolutely healthy people or patients. Everyone is so-called "healthy with illness". Even if they do not suffer from such a malignant disease as cancer, they may be patients with one disease or another but not diagnosed, or linger in "disease" Don’t fantasize that after a serious illness, you should rely on high consumption and high technology mastered by a famous doctor to save yourself from danger, but you should always maintain a good lifestyle, avoid all kinds of risk factors, intervene in time when you are sick at the end of the disease, and refuse the evil disease from the "Xiao Qiang".
However, with the development of modern medicine, it seems that human beings have no magic to resist all sufferings, including cancer that makes the body and mind tremble. The dice of suffering in God’s hands will eventually be thrown out. The arrival of evil diseases is the fate of life, and someone needs to bear it. With the advent of the age of longevity, the probability of suffering from cancer and other malignant diseases is still rising, even young people are not spared, and they need to be psychologically prepared to meet the malignant diseases. The talented boy who died young wrote proudly, especially in dealing with cancer: "God is going to send a golden tumor to a person, and to whom?" He is afraid that timid people can’t support it, and he is afraid that strong people will bear it flatly, so he will give it to an optimistic person, and those who are optimistic and have no aftertaste will just give it to me. I am beyond everything! " In the face of human suffering, we really need a superman who chews pain like this and then transcends it. Nevertheless, modern medicine should also design a spiritual soothing journey of "arrival of love" and "redemption of suffering" for cancer and other malignant diseases besides coming back to life, so that they can "step on thorns, feel no pain, have tears to shed, and are not sad" (Bing Xin: Send a Letter to a Little Reader), which can be regarded as an ultimate pursuit for cancer patients in pain. It is a set of "holistic pain" for cancer patients, highlighting the value of care and creating a dignified and quality survival and life plan. This scheme, once known as palliative care, began in 1967, marked by the British nurse Sanders.Dame Cicely Saunders established a hospice ward in St Christopher’s Hospital in south London, which started the modern hospice movement. Julia M. Addington-Hall, Saunders’ successor and the current director of the hospice care unit of St. Christopher’s Hospital, co-authored with Irene Higginson, and Li Xiaomei, Zhu Ping, Li Fan and Liu Duanluan led 46 elite colleagues in the hospice care industry in China to jointly translate (to adapt to the multidisciplinary and interdisciplinary characteristics of the book) the book palliative care for non-cancer patients. It describes the difficult course of hospice care concept and action advocated by Saunders from initial germination to worldwide popularity, and also describes the difficult butterfly change of hospice palliative care from exclusive service for cancer patients to universal benefit for all chronic patients (such as heart, lung, liver and kidney failure, severe blood diseases, gradual freezing and other neurodegenerative diseases, AIDS, serious and rare diseases of children and adolescents). After reading this book, people will deeply feel that the opening, construction and perfection of modern hospice and palliative medical system are the greatest medical benefits born of cancer and chronic diseases.
British nurse Saunders who established the hospice ward (Source: stchristophers.org.uk)
Palliative care for non-cancer patients, by Julia and Irene, translated by Li Xiaomei and Zhu Ping, Science Press, 2023 (Source: dangdang.com).
In the initial hospice ward, there were mainly patients with advanced cancer, who suffered from physical and mental pain, shivering in the eyes of death and crying to the sky. The focus of palliative care is no longer to exterminate cancer cells, but to dispel physical and mental pain, gain insight into the end-of-life counseling of death, and improve the dignity and quality of life. People often say that the highest state of life is "come crying (be born) and go laughing (die)", but it is not easy to really be on the cliff of life and death without shaking your feet. In the late stage of cancer, it is a narrow road to meet death. just visiting, who heard the footsteps of death approaching, must pierce the window paper as soon as possible, so that patients and their relatives can accept the unexpected encounter of death. Montaigne, a French writer who was tortured to death by lithiasis, once said heroically: It is better to stop and invite death to drink a cup of bitter wine than to be chased by death.
Ten years ago, the authoritative website of British Medical Journal published a wonderful article entitled "Death from cancer is the best death". The author is Richard Smith, the former editor-in-chief of the journal. Compared with the mentality of ordinary people talking about cancer discoloration (in essence, talking about death discoloration), his views are shocking. Because compared with sudden death without saying goodbye, cancer death may be more elegant, and it is a death benefit exclusively for cancer patients. From diagnosis to death, there is at least three months, and most people have a buffer period of more than one year. It is a prepared death, and there is enough time to arrange their last time, wave goodbye to my relatives, say goodbye in heaven and reflect on life. Leave your last words to your family and friends, and maybe you will have time to go to your favorite place, read some favorite poems, listen to your favorite music, and make all the preparations for the last moment. In Smith’s view, romantic death is love, morphine (powerful analgesic) and good wine, instead of forcing ambitious oncologists to waste a lot of money trying to cure cancer, which will make cancer death worse. The most terrible death is the kind of life that depends on modern medical technology, the kind of endless lingering. In the name of Hippocrates, doctors created one of the most exquisite and elegant tortures for human beings: the delay of slow illness and slow death.
Richard smith, former editor-in-chief of British Medical Journal.
Hospice palliative care, also known as hospice care, is a shift of attention, concern, care and clinical work focus between doctors and relatives, from coping with diseases to coping with pain, including symptomatic solutions to physical pain: pain relief, cough relief, antiemesis, itching relief, spasmolysis and asthma relief, nursing of fever, swelling reduction, skin bedsore and oral ulcer, improvement of weak nutrition, and community situation and emergency situation. The list of work is detailed in the book, which is not only of guiding value to occupational medical care, but also of guiding significance to the family members (that is, non-professional caregivers) who are taking care of at home. It also introduces the life care of the whole person’s pain and the spiritual comfort method of parting. At this time, although life cannot be healed, life can be respected, inquired and cared for, giving new meaning to life. The transfer of hospice care purpose brings about the change and adjustment of ideas. The object of intervention is not just a simple body, but a whole person; Intervention means are not just medicine, injections and surgery, but stories and narratives, music and drama, life review and reconstruction of life meaning. Clinical thinking is no longer confined to the intervention of biotechnology, but extends to life care, individual dignity and quality of life. What is worth cherishing is the discussion of ethical topics in hospice care, especially the problem of fairness and justice in the allocation of medical resources, and the detailed discussion of social, cultural and psychological projection of various symptoms in hospice care and cross-cultural care, which not only broadens the field of vision, but also closely follows the practice, and the content is not empty or informal.
Undoubtedly, cancer is only one of many chronic diseases. Human beings have entered the era of chronic diseases because of their super longevity. Its basic feature is that medicine and medical treatment are experiencing unprecedented incompetence, powerlessness, ineffectiveness and helplessness. First of all, more and more chronic diseases are treated, and the war model of diagnosis and treatment fails. The pathogenic factors (enemies) are not limited to external bacteria and viruses, but more are internal life stalls, immune out of control, dysfunction, psychological disorder, loss of value, weightlessness of soul, and life out of focus-frustration. It is necessary to get out of the trenches and put down fighting thinking; Secondly, the course of chronic diseases is getting longer and longer, and the alternative model of diagnosis and treatment (technical survival) encounters the dilemma of high cost, low quality of life, maintenance of physical function and mental decline; Third, the disease is becoming more and more difficult, and the medical performance is declining (ineffective medical treatment is obvious): quick cure and quick recovery to slow cure and slow recovery, and then to no cure and no recovery, from quick death (sudden death) to slow death (relying on a complicated life support system to survive), and then to neither death nor life (unconscious, dignified and quality-free survival); Fourthly, the body-mind-society-spirit representation of the disease is becoming more and more stereoscopic, and the role of the doctor is changing silently, from the rescuer to the companion, comforter and witness, bidding farewell to the obsession of never giving up, moving towards the acceptance and openness of death, ending the dependence and moving towards a good death (a good death); Fifth, psychological, social and spiritual weights are getting heavier and heavier, and medical intervention is turning, from drugs and scalpels to language, picture books (life and death narration) and music (looking back at youth and looking forward to heaven) to realize psychological comfort (consciousness) and spiritual comfort (liberation); Sixth,The purpose of medicine is changing quietly, from safety and well-being to tranquility, serenity and settlement, concluding the legacy of love, turning cold death into warm love arrival, and realizing both life and death in farewell, love, apology, thanks and love.
Hospice care at St. Christopher’s Hospital (Source: stchristophers.org.uk)
Hospice care at St. Christopher’s Hospital (Source: stchristophers.org.uk)
Regarding the evolution of the concept of hospice care in the era of chronic diseases, there are some basic principles worth spreading and letting the world know and agree. First of all, the irreversible process of life failure and death can only be alleviated by any medical intervention, but it can’t be cured. There is a huge gap between it and the reversible disease, the psychological expectation that it can regain vitality and reach rehabilitation through intervention. The pathological features of aging and the end of life are the degeneration of organs, tissues and cells, rather than alienation and disproportionation, which are mainly manifested in functional degeneration, behavioral withdrawal and intellectual degeneration, leading to disorder, disability, amnesia, loss of emotion and will, loss of personality and dignity. Modern medicine prides itself on the failure of the war model of etiology control and the substitute model of functional improvement, and the palliative, tranquil and palliative medical model appears. Secondly, there is a huge gap between physical pain and the core of human pain. Pain is not pain, and pain relief is not soothing. The primary intervention of hospice care is full analgesia (symptomatic treatment). Its advanced intervention is caring: attention, concern, concern and empathy, which is the psychological decompression of the concentration of talking and listening. You say it, I am listening carefully, and I have had this pain experience … Advocating a dialogue between doctors and patients on pain experience. Thirdly, healing is not dignity, and the primary goal of hospice care is to pursue etiological improvement, while the advanced goal is to safeguard the life dignity of patients and help patients and their families rediscover the meaning of life. Fourthly, in the end-stage palliative care, the dual-track paradigm of technology and humanities and the simple paradigm of technical intervention are judged. Here, treatment is no longer killing and repairing.It is caring and caring, and its primary vision is to focus on disinfection and repair. Etiology, pathogenesis and symptomatic treatment can eliminate the cause and restore disability, but they cannot cope with dementia, frustration, disqualification and disrespect. The advanced vision of treatment is to focus on the improvement of the whole person’s situation and quality of life, and to implement the whole person’s care and care. Fifth, there are many cognitive biases in the end-stage physical and mental intervention. Psychological intervention is not spiritual comfort, the former is the relief of psychological symptoms and the dilution of negative psychological motivation, and the latter is spiritual comfort and the ultimate care. Sixth, there are also cognitive misunderstandings in the process and meaning of death. Physical death is not the whole person’s death (which can’t cover sociological death), and mortuary is not the end of life journey. The early task of death counseling is to face the warning and interpretation of death crisis, and the later task is to recognize the meaning of death, maintain tension between refusing death and accepting death, controlling death and excessive intervention, and help patients and their families to be open-minded about life and death and conclude a legacy of love. Finally, communication between doctors and patients in palliative care is not doctor-patient communication. Communication training only increases the affinity of communication between doctors and patients and nurses through language improvement, while communication training expands the depth and abundance of communication between doctors and patients and nurses through empathy training, integrates into patients’ life and life experience, and improves the quality of life.
In the hospice care unit, doctors and nurses have to deal with all kinds of complicated difficulties at the end of their lives. Traditional medicines, needles and scalpels are of course important, but they also need the devotion of humanity and the nourishment of humanity, including companionship, witness, comfort and settlement. Among them, companionship and witness are the advanced circumstances of care. Doctors and nurses are not only present, but also their personality charm brings hope and human light to patients and experiences "being with angels" (tasting divinity). Medical care witnesses the existence of a weak life and the suffering of a vicious disease. "I know that you are suffering, I can touch and feel your suffering, and I can pay attention to and understand how difficult it is for you now." It is not difficult to imagine that patients and elders are often trapped in emotional loneliness, language loneliness and meaning loneliness because of the sharp contraction of social relations, and feel that they will become "lonely souls and wild ghosts", and they will live without belief support. At this time, they need more determined eyes, loving language and body language to secretly deliver life energy (empowerment). Comfort in palliative care is often a miraculous force, just like the spring breeze blowing the body and mind, which is carried out at four levels: first, physical comfort, such as hugging and touching the forehead, managing the living situation, trimming the margins (haircut, shaving, bathing, changing underwear), recovering life confidence and identity and dignity; The second is language comfort: intimate words, private words, life course review and dignity therapy; Third, psychological comfort, dissolve the psychological knot, and call back distant family ties; Fourth, spiritual comfort, life education, suffering, death counseling, dignity and belief therapy, and reconciliation with nature and the world after death. Undoubtedly,Care at the end of life is a systematic project that constantly updates its connotation, and needs multiple coordination and support. First, it is the four-all cognition of peaceful care, that is, to establish the thinking of caring for the whole family, community, general practitioner, team and whole process; Secondly, it is the support of blood and affection to overcome the companionship fatigue of "no dutiful son before a long hospital bed"; Third, the social and emotional support beyond consanguinity (empathy and empathy), to maximize the mobilization of social workers and volunteers to participate in hospice care; Fourth, the professional value support of hospice care team, such as constructing continuous professional behavior driven by virtue and bioethics, overcoming empathic exhaustion and job burnout; Fifth, caring financial support, overcoming the utilitarian thinking of curative effect. At present, patients and their families generally have the psychology of giving up without hope of healing, unwilling to spend money to improve their dignity and quality of life, and long-term care consumes limited health insurance and medical resources, which is difficult to guarantee continuously; Sixth, social care financing: internationally, there is a dichotomy, that is, medical insurance and long-term care insurance are operated separately, and the resources for etiological treatment are gradually transferred to caring resources for hospice care.
Hospice care in China (source: baidu. com)
Hospice care in China (source: baidu. com)
In all fairness, China’s hospice care is still in a difficult climbing stage, with technical and resource bottlenecks easily broken and concept and system bottlenecks hard to get rid of. Nowadays, not only patients with terminal cancer have not fully entered the hospice palliative medical channel, but also dare not expect non-cancer patients to enjoy the welfare of hospice care. However, the frame and road map of hospice and palliative care carefully described by Julia and Irene are very detailed, and the road signs and objectives are very clear, which undoubtedly adds confidence and strength to our future journey of hospice and palliative care. I think that as long as the whole society really pays attention to death as the "terminal welfare" of life, there will be showers of wealth and wisdom coming simultaneously, which will moisten the hospice and ease the medical cause and make it a towering tree.
Let’s hope that this day will come soon.
(palliative care for non-cancer patients, by Julia and Irene, translated by Li Xiaomei and Zhu Ping, presided by Li Fan and Liu Duanmao, Science Press, 2023).
Original title: The New Issue of Reading | Wang Yifang: Welfare of Diseases
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