By Kwon Joon Young (momumuhappy789@korea.ac.kr), Kim Sun Oh (sunoh93@korea.ac.kr), and Lee Seung Hyun (helloseunghyun@korea.ac.kr)

Cancer, known medically as a malignant neoplasm, involves unregulated cell growth, causing tumors growing inside a patient’s body. It is the fourth leading cause of death, accounting for 12.64 percent of all deaths worldwide. In Korea, however, it is notoriously ranked number one, killing at least 70,000 annually out of a population of 50 million people. Because of cancer’s nature, cancer patients are under great physical and psychological pressure, and their desperate agony of pain is transferred to their families and even to the medical staffs that take care of them, becoming nothing to sneeze at any longer in this country.

▲ A cancer cell. Provided by stage4cancerforum.com.

Sensation
“My wife suddenly asked me what is special about January 14, and she was shocked when I said without hesitation that it was Lee Dam’s 100th day celebration.” This is the last posting on Lim Yun Taek’s Twitter account on January 4, one week before he died. Lim, who had been trying to have his stomach cancer cured, was suddenly hospitalized on January 8 because his condition had deteriorated drastically. During his hospitalization, he carefully planned the celebration event for his daughter Lee Dam, even though he was under a tremendous amount of pain from his disease.

▲ Photographed by Choi Ji Won

In Korea, the number of patients who die from cancer has been steadily increasing, and the average age at which they are first diagnosed has been steadily decreasing. Out of 100,000 people, the number of patients succumbing to cancer went up by about 100 percent from 1984 to 2011, from 72.4 to 142.8. Among the many factors suspected of contributing to this increase, four of them are considered to have had the greatest effect upon Koreans; bad dietary habits, smoking, excessive drinking, and stress.

▲ Photographed by Choi Ji Won

Among these, the great shift in dietary habits is also considered as one of main culprits. With smoking, in particular, the change of dietary habits appears to have resulted in a lot of problems. According to the Ministry of Health and Welfare (MW), stomach and lung cancer have been at the top of the list in both the amount of cancer patients and the casualty percentage. This analysis seems to match the fact that patients get cancer at a younger age than before because nowadays it is the youth who mainly enjoy a carnivorous diet while avoiding vegetables, excessively drink alcohol and caffeine, and smoke cigarettes, the latter being the major cause of lung cancer.

▲ Dr. Chong Mi KyongPhotographed by Choi Ji Won

A Different End
Among numerous cancer patients, those who are most physically and psychologically affected by the diseases are the terminal patients. Indeed, they are continuously tortured by the reality that there is no treatment for their condition and that their lives might come to an end in any second. Therefore, until the last breath, a vast majority of them have no choice but to live under enormous amount of pressure. However, with society putting a much greater emphasis on quality of life, the so-called “well-being,” the treatment plans for those patients have changed accordingly.

Not even that long ago, terminal cancer patients were prone to receive treatment, the purpose of which was to expand the patient’s life as long as possible, and to fight the cancer until their last breath. Such a type of treatment included administering strong anticancer drugs to patients during anticancer therapy, and this caused a lot of patients to suffer until the last moment in vain. However, the concept of “well-dying,” which is derived from that of “well-being,” has become a bigger decision-making factor. Instead of excruciating chemo and radiation treatments, many terminal patients now seek less intense pain control regimens such as music and art treatments. Many different types of medical facilities offer these kinds of treatments, hospices being a representative one.

▲ Photographed by Choi Ji Won

▲ Photographed by Kang Hyun Ji

These types of care are possible because hospices have a “patient-oriented” atmosphere. In other words, in hospices, how the patients feel plays a much bigger role in deciding treatment plans than in other medical institutions. Unless in the case of absolute necessity, the medical staffs in hospices will not execute medical procedures if the patients are not up to it, because the objective of hospices is to make the last part of the patient’s life the way he or she wants it to be, and an enjoyable way.

▲ Photographed by Choi Ji Won

As the number of reported cases of patients suffering from side effects caused by anticancer therapy that has been generally high thus far, many cancer patients are searching for alternative treatment plans. In compliance with this phenomenon, even early or mid-stage cancer patients sometimes consider a hospice as their plan. Chong, however, does not recommend a hospice in lieu hospitalization to early or mid-stage cancer patients. “We do not offer the cure or fundamental treatments for cancer,” Chong mentioned. Simply put, if the condition of a cancer patient is still curable, they should get the necessary treatments that can only be offered by general or university hospitals.

A case in which a mid-stage cancer patient asked to be hospitalized Jeon Jin Sang has happened in the past. Even though in this case the patient needed chemo and radiation because there still existed the possibility that his condition might have gotten better, he seemed to have already given up on other possible treatments. Chong believes that patients should not abandon any hope for life, but she understands his reasons of doing so. “Cancer gives astonishingly more psychological, physical, and financial pressure to the patient than do other diseases because cancer has a higher casualty rate, the pain is more excruciating than that of an infant delivery process, and the treatments are astronomically expensive.” Chong explained.

Cancer, Not Only Do the Patients Suffer
Cancer has become an illness that includes all the hallmarks of a chronic condition, which requires long-term care and support in biomedical, psychological, behavioral, and social areas. Nevertheless, cancer patients are not the only ones who suffer from diverse problems and require such support. Families of cancer patients are also influenced by the life-threatening disease of their loved ones. They undergo significant changes, often experiencing emotional distress, which includes fear of losing their loved ones, depression, physical problems, sudden changes in roles, and financial burden.

Families of cancer patients greatly suffer from emotional distress. Similar to the cancer patients themselves, the families often go through Elisabeth Kübler-Ross’s five stages of emotional changes: denial, anger, bargaining, depression, and acceptance. The first reaction to learning of serious illness like cancer or death of loved ones is to deny the reality. Families say to themselves that their doctors misdiagnosed it and tend to escape from reality. Refusing to accept is a natural reaction to rationalize overwhelming emotions. When they can no longer deny it, families enter the state of rage. Anger is aimed at doctors, other family members, friends, or even strangers. They rationally know that these people are not actually to be blamed, but they emotionally resent them for causing pain, while at the same time feeling guilty for their fury. After the stage of rage, families of patients make a deal with God or a higher power. Going through the stage of bargaining, families then fall into depression. Fear of losing loved ones dominates, and it triggers intense sadness. The final stage is acceptance. Families eventually come to accept the inevitable reality after four dramatic stages. They quietly realize that they must live out their lives with their loved one to its fullest extent. The stages do not necessarily occur in this order; however, what is important is that both patients and families need support and care to handle such overwhelming emotions.

Among various emotional problems family members face, depression is one of the most evident symptoms. According to the National Cancer Center (NCC), 82.2 percent of family caregivers showed symptoms of depression, while 38.1 percent displayed symptoms of anxiety. Also, 17.7 percent responded that they had urges to commit suicide at least once, while 2.8 percent actually tried to commit suicide. Depressed family caregivers who have to quit their jobs and take care of their ill-loved ones often lose social contact or relationships with other people, exposed to suicidal danger two or three times higher than other people.
Fortunately, however, there are also many cases in which family caregivers who undergo the five stages achieve an internal growth. Cancer patients and their families, compared with ordinary people in a similar age group or of a similar intellectual level, truly appreciate their lives and are satisfied with what they currently have. Many studies have also proven that the bond among cancer patients and families grows even tighter and their religious beliefs stronger.

▲ Photographed by Choi Ji Won

Lee also experienced the five stages and changes in her family relationship. When she first learned that her father was diagnosed with colorectal cancer, she could not feel anything. “I had a vague sense that there would be hard times ahead of us, but I was not sure how it would bring about a change that would affect my entire life,” said Lee. She was not able to fully understand what her father’s illness would lead to. As she witnessed her father in great agony while he underwent treatments, she was, at last, trapped in the growing fear of losing her father.

Lee, who was brought up in the Christian faith, depended heavily on the religion so as to maintain courage and hope amid adversity. Despite the growing fear of losing her father, Lee and her family constantly made an effort to maintain a bright, positive atmosphere with a firm religious belief. Lee said, “Although a depressing and dark atmosphere still remained, my family tightly bonded and remained positive about life.” Nonetheless, there was a constant conflict between Lee and her mother even with trivial matters especially because Lee was living in Seoul by herself away from her family and was sometimes not well aware of what was instantly going on. Becoming exhausted and sensitive, it was difficult for both Lee and her mother to truly identify with each other. After an intense emotional collision among family members marked its highest point right after her father passed away, they began to depend on each other more than ever. Lee took close care of her sister and talked to her frequently, and her family overcame the hardships together.

Families of cancer patients suffer not only from psychological pain, but also from physical problems. While patients receive numerous treatments such as anticancer treatments and chemo radiation therapy, the families have to devotedly nurse them, which often leads them to become frail. Family caregivers, indeed, confront various health issues. Overwhelmed by pressure and responsibilities, they tend to suffer from insomnia, mouth dryness, muscle spasms, indigestion, colds, and severe headaches. Moreover, in the case of a caregiver whose partner is ill, problems relevant to their sexual life sometimes occur. Cancer patients receive long-term medical treatments and they are in a condition where physical closeness might not be desirable for both the patient and the partner. Studies have proven that some cases, in fact, lead to divorce. Although they are extreme cases, they show that physical problems with which families struggle are serious.

Cancer patients require long-term treatments and care, which result in economic burden for their families. Recent studies about cancer patients and their families cited by Professor Kim Jong Woo (Kyung Hee University, Korean Medicine) show that while one-third of cancer patients are in need of family support and care, 31 percent spend most of their savings on the costs of the medical treatments. Costs for medical treatments and nursing must be onerous for families, especially because no one can assure how long these medications will be required. In today’s society, in which the number of people with chronic conditions is increasing and in which hospitals encourage early discharge in spite of the necessity for longer periods of treatment, the burden of families with respect to nursing has intensified. Some family members also have to sacrifice themselves. The studies cited by Professor Kim have demonstrated that 20 percent of family members quit their jobs to take care of their ill loved ones.

Lee and her family were no exception. Lee’s family completely depended on her father for their livelihood. His illness, in other words, meant that they no longer had a source of financial support. With the high cost of cancer treatments, her tuition fee was burdensome for her family. “Although my family avoided the worst scenario of bankruptcy with the help of my relatives and my father’s friends, any expense was burdensome. I now have a part-time job and earn my own living,” said Lee. She also had extreme pressure on her choice of career. Lee, after being admitted to the Department of Food and Nutrition at Korea University (KU), was not certain if she truly wanted to study the field. She was thinking of various options including preparing for the college entrance exam once more. “However, shouldering new, unfamiliar responsibilities after the loss of my father, considering other options became selfish. I have no choice, but to plan my future within my major.”

Although sufferings and sacrifices of cancer patients’ family caregivers are seen as their bounden duties, they are in an urgent need of help and care.

Next Step for Cancer
The number of people with two or more cancer patients in their family has doubled in the last ten years. Cancer is becoming a factor in many lives. Even though cancer itself has not changed since the last decade, the way we deal with cancer has changed and is changing dramatically.

The fact that the number of patients and people associated with cancer increased in the last decade may cause some to question whether we are properly dealing with cancer at all. Despite these worries, doctors and experts alike say that there has been a significant improvement in cancer treatment and that this statistic is evidence of this improvement. Lee Dae-Ho, a doctor of the Seoul Asan Hospital Cancer Center, explained the reason why the number of cancer patients has increased. “Ironically, it is because more cancer patients have been diagnosed.” With more advanced technology and equipment, people these days are diagnosed with cancer at an earlier stage and treated more quickly. Moreover, those with cancer survive longer through the help of modern medicine and that has led to the numbers increasing.

The treatment for patients directly concerned with their health seems to be on a promising path. Yet Professor Kim Kyeong Ran of Yonsei Severance Cancer Center, a doctor of neuropsychiatry, emphasized the importance of fundamentally restructuring the cancer system so that it properly suits the new status quo of cancer. “Now that cancer has become common and treatable, we need to take a wider perspective of things. We must now realize that cancer affects more people than only the patients.” Professor Kim stressed that the focus has always been on the patient until now, and although it is natural that the patient is the one to be treated, she underlined that family members around them should also be factored into the equation now. “The new component added to the equation is ‘family,’” said Professor Kim.

Having the Financial Means
This restructuring of the cancer system is in the works. The government and the hospitals are adapting to “the new paradigm” regarding cancer. The government is focusing on eliminating economic burdens that prevent increasing numbers of patients from receiving proper treatment and that families of cancer patients have shouldered so far. To address cancer as more than simply a disease but rather as a “social status” that needs to be dealt with, the government is currently employing various means to supply patients economically.
There has been constant effort in the last decade to address the problem from a national perspective. From 2006, the Korean government implemented a policy that would require patients to pay only five percent of the total costs of cancer treatment. To make this possible, almost 10 percent of the national health insurance fund is used to cover the costs. On top of this policy, the current government, led by the President Park Geun Hye, proposed a policy that would cover all costs of cancer treatment, but later retracted the proposal due to feasibility issues. Although it was retracted, it can be seen that the government is doing all they can to help citizens fight cancer.

Currently, the government provides these funds through medical social welfare teams working out of hospitals. This applies to all cancer patients in all stages. The amount of financial support that the family will receive depends on the required treatment, the family’s financial status, and the nature of the cancer. Yet, they will get appropriate support after deliberation by both the doctors and welfare workers. In cases where the government is unable to help owing to particular reasons, these teams may connect would-be beneficiaries to other foundations that may provide support. In the case of people with health insurance, they can fill out request forms for financial aid from the government. Again, it depends on what kind of insurance and cancer the patient has, but patients can be given up to 20 million won.

In addition to expansion of traditional forms of economic funding, the government is preparing ways to help people in urgent need of treatment but without the financial means to obtain it. Patients can call either the city or district office to receive immediate economic relief. This relief aid will be offered promptly, without the burdensome paperwork or strenuous procedures, aimed at helping people receive treatment in life-or-death situations. These expanded programs of economic relief aim at not only simply helping patients but also relieving patients’ families from the mental burdens stemming from economic deprivation that cancer can bring.

Preparing Mentally for Cancer
While such economic aid focuses on preventing or alleviating conflicts related to money problems, some efforts concentrate solely on directly managing the psychological stress that the patients and their families suffer from. Professor Kim stated that many families may need counseling in the course of treatment. “The entire dynamics surrounding cancer patients have changed, and so must the attitude and public awareness,” she said. “Patients and families must understand that they need a new perspective about cancer.” The life expectancy of cancer patients has increased significantly and many doctors say that families and patients should find a new dynamic of cancer treatment.

This new dynamic includes a better long-term understanding of cancer. It is an understanding that cancer no longer means a death sentence for the patients and a loss of economic well-being and social life for patients’ families. “Many conflicts stem from miscommunication between patients and their families,” said Professor Kim, “and miscommunication is derived from the wrong conception about cancer.” Hospitals are hosting more seminars to educate both the public and patients about cancer treatment. Moreover, as hospitals build centers solely dedicated to dealing with cancer, they have a psychiatry department fully invested in keeping patients and their families mentally stable to deal with the treatment process. Professor Kim believes that such programs that bring about an environment for families to deal with cancer can be a fundamental basis for any cancer treatment.

There is still no complete recovery from cancer, but at the same time, it is also true that cancer can be treated. Survival rates have surged in the last decades and more precise diagnoses allow for an earlier treatment of cancer. Dr. Lee Jong Cheol of Korea Research Institute of Chemical Technology, who researched Oncology, says that cancer has become more of a disease that people live with. So it may be time to take a step back to understand cancer from a wider perspective. By understanding the pain of not only the patients but of the family that provides and supports them, and the society that surrounds them, we may create a society where people can handle cancer.