Death education in home hospice care in Japan Hiromi Kawagoe Journal of Palliative Care: Autumn 2000; 16, 3: ProQuest Health and Medical Complete Death Education in Home Hospice Care in Ja apan MI KAWAGOE, Community Nursing, St. Luke's Nursing College, and KOH KAWAGOE, Home Care Clinic goe, Tokyo, Japan Abstract /In the practice of home hospice care, or one third of all deaths were due to cancer. In death education for both patient and family is ex- 1999, 92% of deaths from cancer occurred in the iremely important, although little information on its general hospital, 2% in an institutional hospice usefulness is available. In this study, the effects of or palliative care unit, and 6% at home. This death education under home hospice care were trend to having death take place in institutions analyzed for 16 patients who died at home. Death has meant that the general public has becom at least once in each phase of care, and at least four isolated from dying and ignorant of methods for times in total. The acceptance of death by the patients dealing with imminent death was judged according to the way they spent their Death education in home hospice care was es- emaining time, to their attitudes, and to their hope for tablished as a realistic and practical method for a life after death. Fourteen of 15 patients appeared to a patient and her /his family to live out their accept their own death. An autopsy was performed in remaining days in ways acceptable to 16 cases. In one case, the doctor recom- therefore involves not only medical care,but mended an autopsy to the family, in the other cases, also education. Using death expected in the it was performed in accordance with the patients or family's wish As the goal of death education in home short term as educational material results in hospice care is the acceptance of death by both pa- death education itself. However, the content tient and family, our methods of death education ap- must be practical and individualized, and the coals are different from those of death educatior n general. Although important, death educatio Resume Lorsqu'on dispense des soins palliatifs a in home hospice care has not been widely stud- domicile, il est extremement important que le patient et sa famille soient renseignes sur la mort et sur tous ied in Japan( 1 ). This is mainly due to doctors' peu de litterature sur I'utilite de le faire. Dans cette few home hospice care services, and the diffi etude nous analysons les resultats de cette formation culty of evaluating its effects objectively sur la mort aupres de 16 patients qui sont decides a In the present study, we examine 16 terminally la maison. Nous avons eu au moins quatre fois des ill cancer patients who received home hospice conversations sur la mort avec chaque patient durant care, and discuss the theory of death education les diverses phases de la maladie. C'est a partir de la While such studies tend to be subjective and liter- facon dont ils ont vecu leurs derniers jours, de leurs attitudes face a la mort, de leur espoir d'une autre vie ary, we have attempted an objective analysis avons juge s'ils acceptaient la mort. Des 15 based on accurate data. Conversations with the patients, 14 semblaient accepter leur tient or the family were recorded and evalu autopsies a ete pratique dans 5 des 216 cas Dans un ated In 10 out of 16 cases, death conferences with cas c'est le medecin qui l'avait recommandee a la the bereaved families were held to confirm famille, dans les 4 autres cas c'est a la demande de whether or not our assessments were correct Us la famille et selon les volontes exprimees par les g this information, the goals of death education patients qu'elles ont ete pratiquees. Dans le cadre in home hospice care in Japan are evaluated des soins a domicile, le but de notre formation sur la ort etait que le patient et sa famille puissant ac CASES AND METHODS cepter la mort; il semblerait donc que notre methode de preparer les patients et les familles a la mort soit Cases The subjects were 16 incurable cancer patients INTRODUCTION selected from registered home hospice care. The criterion of selection was that the death educa In Japan, cancer has been the leading cause of tion be delivered in certain ways, as will be de death since 1983. In 1999, about 270,000 people scribed. All the patients died at home Reproduced with permission of the copyright owner. Further reproduction prohibited without permission
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Death education in home hospice care in Japan Hiromi Kawagoe Journal of Palliative Care; Autumn 2000; 16, 3; ProQuest Health and Medical Complete pg. 37
8535g86工 Table 1/ CASES Duration of Home Hospice (chief caretaker 二 mother, father, sister 0548 fe, parents, 2 daughters, 2 sisters husband, son, daughter 3456789 Uterus FFMM wife, daughter wife, 2 daughters, sons-in-law, granddaughter vife, son, daughter, mother, 3 sisters 23456 daughter, grandson, granddaughte 79 Uterus on, daughter-in-law, daughter, housekeeper MMM rife, daughter, 2 grandsons Prostate ife, daughter and son-in law, son and daughter-in-lay Abbreviations: M= male, F= female Nine patients were male and seven female. the current medical care needed and how it The average age was 60.8 years(range: 20-86 could be provic ed at home years).The primary cancer sites were the nursing care of the dying(for the family only) gastrointestinal tract in four, liver in two, pan introduction to similar cases and books con creas in two, lung in two, ovary in one, uterus in home hospice care two, breast in one, prostate in one, and bone in ng phase, death eaucation was was 106.1 days(range: 20-425 days)(Table 1). given to the family members who were involved Death Education family to take care of the patient without medi- Death education in home hospice care involved cal staff involvement. The following points were truth-telling", providing the patient and family discussed with information regarding the disease, such as things to note while caring for the patient iagnosis and the fact that the disease was incur- ocess able, and the life expectancy. Death education was how to confirm the patient's death carried out at least four times in each case: during the introductory phase, the stable phase, the d ing phase, and the bereavement phase During the introductory phase, the education Death education after death was given to was provided to both patient and family. The sig the following e grief. The education included family to man nificance of their final time together at home was explained. Education covered the following areas: support for the family in preparing for the the differences in medical treatment at the hospital and in home care home visits by the doctor and nurse to care the current medical care needed and how it for the body with the fa uld be provided at home final explanation of the course of the disease including autopsy results In the stable phase, education was also given a conversation with the family to both patient and family. The goals here were to provide support for an acceptance of death Evaluation of Death Education to live with hope until death. The following To assess the effect of death education, precise docu- points were discussed mentation was used, including recorded conversa the state of the disease ons between patient, family members, and medical the estimated time of death, with any expla- staff. a record of the death conference, in which the nation necessary family discussed their memories, was also made Reproduced with permission of the copyright owner. Further reproduction prohibited without permission
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Table 2/"TRUTH TELLING"IN HOME HOSPICE CARE Incurable State Remaining Days Who? Y/N Time Who? Time Who? exceptional N B 67890 YYYYYY BBBA AAAAAAAA mDDDDD 12 N ABABBBBBABB B NYYNN YYYNYYYYYNNYYNN Dr N: no Y: yes B: before initiation of home hospice care D: daughter H: husband W: wife Table 3/ PATIENTS ATTITUDE TOWARDS DEATH death","I shall be in the same gra Living Actively shall meet my family again"were considered Judgement In Days Remaining For The Future indicative of belief in an afterlife The efficacy of death education was evaluated 14 8 based on how the final care was performed, and Exceptional case whether or not the patients or families consented to an autopsy. Assessment of final care included review of persons who attended the death whether or not a doctor was present, and other "Truth-telling"was analyzed based on three conditions. Regarding the autopsy, who consented points: disease diagnosis, its incurable state, and to the autopsy and stage of illness were analyzed the predicted life expectancy. In one case, this nalysis was not performed because the patient RESULTS was mentally handicapped The results of death education were judged Truth-telling for each case by studying the process of death Ten patients were told the name of their illness, acceptance in the patient and family during cancer, before home hospice care began Five pa home hospice care, and by analyzing how the tients( Patients 2, 5, 12, 15, and 16)were not in- death was accepted. Whether or not the de- formed Of the 10 patients who were informed ceased accepted his/her death was judged ac- seven were told by the doctor in charge and the cording to two criteria remaining three were told by a family member (Table 2). Eleven patients were told that their con- how the patient had spent his/her last days dition was incurable. Eight of these were told be whether or not the deceased believed in an fore initiation of home hospice care, four by the the three cases told after the initiation of home hos The first was assessed based on the way the pice care, two were told by a doctor and one by a patient had arranged social matters, if they had family member. In 10 cases, the time remaining to made arrangements for a funeral service or them was discussed with the patients. Except in grave, and if they had expressed gratitude to the one case, this information was provided by the bereaved.Whether or not the deceased believed author after the initiation of home hospice care in and dreamed of an afterlife was judged by There were many problems associated with what he/ she said before death. For example, " I Patient 2. The patient was a 36-year old man shall always be with my family even after my with stomach cancer. He was not correctly in Reproduced with permission of the copyright owner. Further reproduction prohibited without permission
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formed of his illness and believed that his condi- Two days before her death she said tion was curable. As a result, he did not want to go home from the hospital. Complying with a I will have all your seats reserved in Heaven, so strong request from his family, however, his please put many handkerchiefs in my coffin home hospice care began. Concerning"truth- After her death her husband remarked telling", there were serious discords among his family members, especially his mother and his The intensity of our married life during the last six 8a工iE9rs5 wife. Without naming his illness, we told the 25 years. I feel sorry for her but I am convinced she patient that his condition was incurable and his remaining time was limited We judged that this patient has accepted the The Acceptance of Death by Patients Based on how the patient lived during their re- Patient 5: The subject was a 51- year-old woman maining days, death was accepted by 14 patient with cancer of the uterus. At her husband's re and one(Patient 5)was unclear(Table 3). Patient quest, she was not told that her cancer was in- 1 is omitted from the review of death education because of the patient's lack of understanding. naturally became restless at times; she was calm Judging from the hope for an afterlife, acceptance when in good condition, but plained of of death was observed in eight cases(Patients 2, 3, great restlessness when in poor condition. She 4, 6, 10, 12, 13, and 15)and six cases were obscure. appeared to be stable about two weeks before The process of acceptance was reviewed for each her death and said, "Things will take their natural Itient, and eight are discussed he course."Fifteen days before her death, however she reported severe pain and her anxieties in patient 2: As mentioned previously, this patient creased because she had not been well informed was not told the name of his disease, however, of her illness. Her husband strongly wished to he was told that his disease was incurable. Four take care of her at home but the patient was anx- days before his death he said to his four-year- ious because she was not in the hospital. Ten days old child, "Papa will be disappearing, "and to before her death, she was moved to the hospital his wife, " We have been married only eigl ht and remained there until two days before her years. Thank you. "Three days before his death death when she was taken home again. Arrange he said to his father ments were made one day before her death for a Thank you for everything, father. Let me pay my baptism. She was baptized a Catholic after which, score in Heaven. Please look after by wife and son. according to her husband, she completely recov- ered her composure. In this case, the auth He was baptized on his deathbed. Although he cluded that the acceptance of death did not take r con was only 36 years old, he accepted his death, pre: place until she was baptized Patient. 6: This was a 54- year-old woman with Patient 4: The subject was a 49-year-old woman ovarian cancer. Twenty days before her death she with stomach cancer. Thirteen days before death I have made up my mind, because of the explana tion I heard yesterday. However, I do not wish to hospital for medical research. I wonder if the be in a coffin all alone as I will feel lonely. What pathological autopsy is much more significant. I worries me now is that I mig ted in do not wish to receive any medical treatment after I become unco Heaven. However, Ms. Takana's(visiting nurse My life n Gods will. If possible, I wish to avoid the time Ten days before death she said Nine days before death she said My husband read me a book titled I Want to Die at I am aware of my limited life, still I am worried ome(pt A week before her death, all of her family members got together to talk. The following Two days before death she wrote a haiku(17. syllable poem) expressing the joy of being ac- order he heaven and her gratitude to all iss. My regret is that I shall have to The aut leave so soon after I see my family in an ideal way death and arranged her life in her own way. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission
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Case no 8: The patient was a 59-year-old man nothing at all to worry about or regret. "He with liver cancer who was discharged from the chose to stay at home. Six months before death, hospital. He was a company worker and had left he stated that he would sign the necessary docu a lot of unfinished work when he was taken to ments to allow an autopsy. Four months before the hospital. He thought he could not manage death he said his work in the hospital but could at home Thus, he agreed to go home from the hospital In January of this year I was told that I would live He handed over his job to a colleague, and set for only six months without hospital care but I tled his financial affairs. He was thoughtful to have survived 10 months since then. I am very satisfied that I chose home care his family members especially to his wife and spent his remaining days at home in pe e. The Twenty-three days before death, stretchin author judged that this patient accepted death. out three fingers, he said"I think I shall be all However, his attitude toward an afterlife could right for another three days. "The author judged not be determined that this patient accepted death and lived his remaining days as pla Acceptance of death Patient 9: This was a woman, 62 years of age, was very active. His belief in an afterlife could with lung cancer. She was preparing for her last not be confirmed days at home. She read a book entitled Katei de mitoru gan kanja or Terminally Ill Cancer Patients Patient 16: This boyear-old man with cancer of being Cared for at Home(Publisher: Medical the pancreas stated eight days before death that Friend Co. At the time of my first visit to her he thought he could live a little longer, but it she said: was fate after all. This patient was not given adequate information regarding his disease, yet not care even if i die tomorrow providing that he seemed to be aware of the ousness of his I can avoid the last agony condition and accepted death his own way The following is the report of a conversation The Acceptance of Death by the Family between the patient and doctor three months before her death. While looking at a hand mir- Generally it took some time for family members ror, she seemed to be happy. She said: to accept the death of the patient. This accept For only a few days, I have been taking steroids ance took place gradually during home care markably fat. If I continue like and, in most cases, the family appeared to be this, do you think I shall be all right for another relieved when the patient died. During the proc year or so, doctor? ess of death acceptance by the family there were two unusual cases, Patients 1 and 2. As your sickness is rather serious, let's make a plan for every three months to begin with. You will be In Patient 1, due to lung metastasis from an quite all right for three months from now, I think. osteosarcoma, imminent death was predicted After the first three months is over, let,'s make a However, the patient appeared well. His family, especially his mother, could not accept his con dition, At the time of my first visit, hi I told her about another patient who had similar experiences was emotional and refused to accept the infor- A conversation a month and a half before hey mation provided by my predecessor: There is death: " Is your husband all right? "He seems to no means to cure your sons disease. "We be having a hard time and I feel sorry for him." thought that the best way to convince this to show her X-rays of his chest taken et saying, "I fear that I shall not be able to stand up month. Four months later, with the four X-rays and my husband likewise. She was worried about the health of her husband and her son's in front of her, she at last began to realize that profession bu It she had lived out her life at her son was going to die. At that time, she re- gained her peace of mind and decided to care home. Acceptance of death was judged to be for her son, who was becoming weaker day by adequate but whether or not she believed in an afterlife was not known day, and so prepare for his death( 2) A male patient, 36 years of age with stomach Patient 14: This was an 80-year-old man with cancer(Patient 2), was not given accurate infor ancer of the rectum. When his doctor detected mation regarding his disease at the time of his that the cancer had spread to the liver about 13 return home from the hospital. As his condition months before his death, the patient refused worsened, the patient became anxious about not treatment and said, "I am 80 years old now. I receiving hospital care. At this time, there was a have done everything I believed right and I have dispute between his mother and his wife over Reproduced with permission of the copyright owner. Further reproduction prohibited without permission
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