South Korea has been grappling with the challenges of implementing end-of-life care for decades. In 1997, two South Korean doctors were sent to prison for the assisted murder after obeying a brain-damaged patient’s wife’s wishes to stop medical care. The high-profile case resulted in little legal reform until October of 2017, when the South Korean government launched a pilot program for the Hospice, Palliative Care, and Life-Sustaining Treatment Decision-Making Act, also known as the “Well-Dying Act.” The pilot program, involving 13 hospitals, ran until January of 2018. The law took full effect the following month, and between February 2018 and April 2019, more than 45,000 patients have chosen to forgo life-saving medical assistance. The law allows for adults over the age of 19 to create an Advance Medical Directive (AMD), detailing treatment plans to follow in case an individual becomes terminally ill. The law also allows for the rejection of life-extending treatment for a patient who is unable to express their will, under the agreement of the patient’s primary doctor, another doctor who is an expert in the field, and the consent of family members.
“Even though most Korean patients are religious (mainly Christian, Catholic, or Buddhist), many Koreans fear death. The word ‘death’ is still taboo, and talking about death with advanced cancer patients is a really difficult task,” says Dr. Yu Jung Kim of Seoul National University Bundang Hospital (SNUBH). Kim is a medical oncologist who operates an Acute Palliative Care Unit (ACPU). She explains that traditionally, terminal decision-making was made predominantly by family caregivers rather than the patients themselves, and because of this, physicians typically required family permission before disclosing prognoses to patients. “Because the [Well-Dying] Act puts emphasis on patient autonomy, many physicians are now talking about prognoses quite frankly with their patients,” she adds.
The ACPU was created in 2015, two years before the pilot program, because the doctors at SNUBH wanted to integrate palliative care earlier in the course of advanced cancer, and to increase referrals to hospice institutions at the end-of-life. This motive stems from a longer history between hospice workers and physicians. Though palliative care (the relief of challenges posed by life-limiting illnesses) is part of hospice care (aid for the terminally ill), in South Korea there exists some confusion between the two. Because religious groups introduced “hospice care” when it was not supported by the law, many hospice workers still believe the two terms are interchangeable, and that they should play a leading role in patient care. Furthermore, because South Korea has yet to implement a home hospice system, terminal cancer patients are referred to government-certified hospice institutions. Unfortunately, these institutions can only accept up to 20 percent of all terminal cancer patients, and consequently many patients die without receiving adequate palliative care.
Dr. Siwon Lee, also a palliative care physician at SNUBH, agrees that this confusion between palliative and hospice care is a central challenge to the implementation of a stronger system for Korean patients. She adds that some patients will refuse palliative care because of the stigma associated with being a “hospice patient” and that such pre-existing conceptions of what palliative care entails can impede communication between physicians and patients regardless of how clear an explanation may be. Though more than half of the patients at SNUBH are now successfully referred to government-certified hospice institutions, Dr. Kim says that there are also logistical constraints. “The lack of manpower and the nature of the work itself is leading to burnout of our palliative care team. We are trying to increase government and institutional support of palliative care teams in tertiary cancer centers.”
In addition to each hospital’s individual challenges, larger bureaucratic hurdles can prevent entire categories of hospitals from being authorized to end lives early. A recent report finds that only around 1 percent of nursing hospitals can legally stop care, because in order to do so a medical institution requires an internal ethics committee or the payment of an annual fee for a public ethics committee. Smaller hospitals also typically have to go through approval processes in order to access patients’ AMD documents, as opposed to large hospitals, which usually have the resources to secure authorization. Because larger hospitals are generally located in centralized metropolitan areas, some citizens believe access to high quality palliative care is still too difficult to obtain.
South Korea is not alone in its struggle to improve its palliative care system. Interestingly, focus on palliative care in Japan came at around the same time as it did in South Korea. In 1991, a physician at a university hospital ended a patient’s life when the family could not decide how to proceed, and was subsequently imprisoned for two years for murder. Since then, focus on palliative care has led to the establishment of various hospice care networks. Death may be universal, but ways of broaching the subject are not, and progress will be made only as it becomes less and less taboo.
Eugene Lee is a freelance writer/photographer who has contributed to Korea Expose, an English news media start-up, and Neocha, an arts and culture magazine based in Shanghai. Sora Grace Ahn contributed reporting.