전진상 크리닉
가정의학과/완화의학과
정   미   경

1. 말기암환자를 가정호스피스에서 돌보기

환자는 42세의 남자로 38세의 부인과, 고등학교 1학년인 아들, 그리고 중학교 2학년인 딸과 함께 살고 있었다. 암에 걸리기 전에 환자는 인쇄소에서 일했었다. 2004년 10월에 폐암 진단을 받고 한 대학병원에서 치료 중 2006년 2월 뇌전이가 발견되어 방사선치료를 시행 했으나 암이 악화되었다. 7월말에 그 병원 호스피스 팀이 방문했고, 증상조절을 하였으나 경련 발작을 일으킨 후에 환자는 때로 난폭해 졌고 왼쪽 팔 다리가 마비 되었으나 통증 조절은 잘되었다고 한다.

환자는 가난했고, 부인이 가내 수공업을 하여 생계를 꾸려가고 있었고, 환자는 입양된 아들이었으나 발병 후 양부모와 연락을 끊고 지냈다고 한다. 전진상 크리닉의 사회 사업 팀이 개입하여 가톨릭 교회를 비롯한 다양한 재정 후원을 마련했고 평화방송국의 프로그램을 통한 도움도 있었다. 아이들의 학비 지원도 있었다.

처음에는 부인과 함께 진료소를 방문하였으나, 8월말 환자가 움직이기 어려워 진 후 호스피스 팀이 환자의 가정을 방문했다. 점차 통증이 늘어났고 더 많은 진통제와 정신과 약물을 사용하여 통증조절이 가능했다. 10월에 환자는 깊은 잠에 빠진 후 임종하였다.

환자 사망 직후 호스피스 팀이 방문하여 사후 조치를 도왔고 성당 교우들이 장례절차를 끝까지 담당해 주었다. 환자의 미망인과 아이들은 지금까지도 사별간호를 받고 있으며 본당에서 교리를 배우고 있다.

2. 전진상 크리닉 가정 호스피스에 대하여

   전진상 사회의료 센터는 서울의 외곽 중에서도 그리 혜택을 많이 받지 못한 지역인 시흥에 위치하고 잇다. 1975년에 시작되었고, 가톨릭 평신도 단체인 Association Fraternelle Internationale(AFI)가 운영하고 있다. 시작부터 센터에서 일하는 의사, 간호사, 사회 복지사 들이 환자의 가정 방문진료도 겸하고 있다. 활동 내용이 늘어남에 따라, 1996년도부터 의사, 간호사, 사회 복지사 들이 완화의학에 관한 수련을 받기 시작했다. 현재 호스피스 팀은 2명의 의사와, 3명의 간호사, 2명의 사회 복지사 그리고 20명의 자원봉사자가 종양내과, 소화기내과, 심장내과, 정신과, 신경외과, 신경과 자문의사들과 함께 일하고 있다.

말기암환자 외에도 호스피스에서는 난치성의 신경계 퇴행성 질환이나 다른 종류의 심장, 폐, 간 등의 말기질환 환자들도 돌보고 있다. 가정에서 환자를 돌보기 때문에 가족중의 한 사람을 팀의 멤버로 정하여 집에서 환자를 돕도록 하고 있다.

환자가 일단 등록되면 호스피스 팀이 정기적으로 방문하며 환자의 상태와 가족의 문제들을 점검하며 치료뿐만 아니라 가족의 교육도 담당한다. 환자는 24시간 전화로 상담을 할 수 있으며 의학적 도움을 받을 수 있다. 환자와 가족은 낮 동안 진료소의 낮 치료실을 사용할 수 잇고, 전진상의 자원봉사자들이 환자를 돕는다. 환자의 임종 후 사별간호를 시행한다.

더구나, 전진상 진료소 호스피스는 의사, 간호사, 사회 복지사를 대상으로 하는 호스피스 교육도 시행하고 있으며 자원봉사자는 20시간 이상의 집중교육을 받고 있다.

Mi Kyuong Chong,
Family medicine / Palliative care
Jeon.Jin.Sang Clinic

1. Taking care of a patient with terminal cancer at home by the hospice

The patient was a 42 year-old man, living with his wife, 38, his son, a first grader at high school and his daughter, a second grader at middle school. Before coming down with the cancer, he worked for a printing shop. Diagnosed with lung cancer in October 2004, he received treatment from an university hospital, in February 2006, he received radiotherapy for the cancer that had metastasized into his brain only to end up with aggravation of his illness.

At the end of July the hospice team (consisting of a doctor, a nurse and a social worker) of the clinic visited the patient for the first time. He looked peaceful and expected us to provide proper treatment in case of emergency. According to his wife, he suffered epileptic seizures while in the university hospital and turned so violent that the family had a very hard time making it through. His face was edematous and his left arm and leg were partially paralyzed. Ventilation of the right lung was decreased. Pain was under control with the medicine administered by the hospital.

His economic conditions were very poor and, during all the time of his illness, the wife supported the entire family by assembling small electronic parts at home. They had no relatives to reach for help. Having no family, he had been an adopted child and he had no contact with his  adoptive parents during his illness. His wife’s family also lives far away. The social service of our clinic arranged support from local communities including the Catholic Church. Financial aid could also be found through the catholic broadcasting (Pyunghwa Broadcasting Corporation) programs. Some sponsors provided scholarship for the children.

At first, the patent visited the clinic with his wife from time to time. At the end of August, when he could not get around anymore, the hospice team visited him at his place once a week. After September 26, pain increased and he became violent. More painkillers and antipsychotic drugs were administered by mouth at first and, later on, by a continuous subcutaneous infusion device. Pain was brought back under control to some degree and sleeping improved. The hospice team visited him every other day or everyday by that time. The patient fell deeply asleep on October 18 and died who days later as his wife and daughter attended.

The hospice team arrived just after his death, and helped the family say goodbye and put new clothes on him. The parishioners of the local catholic church were very helpful in all the process. The social worker of the clinic helped the family use a funeral service provider for a reasonable price.

Up to the present time, the hospice team provides bereavement care to the wife and children. The family members now join the catechetical program at the parish.

2. About Jeon.Jin.Sang Clinic / Home Hospice

The Jeon.Jin.Sang socio-medical center is located in Shi-Heung, one of the most underprivileged areas in the suburbs of Seoul. It started in 1975 and is run by the Association Fraternelle Internationale(AFI), a catholic lay association. Since the beginning, doctors, nurses and social workers, who work at the center, are also visiting and taking care of the patients at home. As its activities grew, the doctors, nurses and social workers started to receive specific training on palliative medicine from 1996. Currently, the hospice team consists of 2 doctors, 3 nurses, 2 social workers and 20 volunteers as well as advisory doctors who also volunteer in the fields of oncology, gastroenterology, cardiology, psychiatry, neurosurgery and neurology, etc.

In addition to patients with terminal cancer, the hospice also takes care of those with incurable degenerative diseases of nervous system or other terminal illness associated with the heart, lung or liver. Because care takes place at home, one of the family members or another person is required to join the hospice team and look after the patient at home.

Upon registration, a hospice team consisting of a doctor, a nurse and a social worker calls on the patient in a regular basis and check out the patient’s condition and his/her family issues. The team also provides treatment if necessary as well as care and family education. Patients can always have access to consultation over the phone 24 hours a day and ask for medical condition whenever necessary. Roles of the social worker include preparing basic record and monitoring the patient’s economic, social and mental conditions. She also helps the family sort out of problems by getting them necessary resources. Patients and their family members can use the day care room in the clinic during daytime for treatment or a respite. Volunteers trained by Jeon.Jin.Sang clinic call on patients twice a week to offer help and spend time together. After patients die, the hospice team arrange a meeting for left families or call them to get over their grief.

Furthermore, Jeon.Jin.Sang Clinic Hospice offer training courses, including practice for doctors, nurses and social workers. Hospice volunteers received over 20 hours of intensive training and extra training, if necessary, at monthly meetings.