Introduction

The majority of bereaved families in Japan tend to resist autopsies due to the cultural and historical background of Japan, including the desecration of the dead. Therefore, it is important to have a relationship of trust and mutual consent between the physician and the patient/family. There are four types of autopsies performed in Japan: systematic autopsy, judicial autopsy (to determine the cause of death of a corpse suspected of having been involved in a crime), administrative autopsy (to determine the cause of death of a corpse not involved in a crime), and pathological autopsy. Of these, the pathological autopsy is the one that tends to receive the least ethical consideration. The Japanese guidelines for pathological autopsies and the law on the preservation of cadaveric autopsies stipulate that, in cases of incomplete decision-making capacity and in the absence of a substitute decision-maker, a pathological autopsy must be performed on an unclaimed corpse 30 days after confirmation of death, or when two or more physicians (one of whom may be a dentist) are treating a patient who has died. In the case of the death of a patient who was under the care of two or more physicians (one of whom may be a dentist), the need for an autopsy to determine the cause of death is permitted [1,2]. Of course, the consent of the bereaved family is a prerequisite. In this case, in the absence of a proxy decision-maker with no relatives, what ethical considerations are required in terms of respect for autonomy and the responsibility of the pathological autopsy, even if legally secured, in a case where the person is judged to lack decision-making capacity? This case is an illustrative example of this point [3,4,5]. This case study is an example of the usefulness of ethics mediation assistance for ethics consultation in this regard.

The purpose of conducting the pathological autopsy in this case was to bridge the difference between the image-centered clinical diagnosis and the definitive diagnosis after the pathological autopsy, and to utilize this difference for future diagnosis and treatment decision-making policy.

Case Study

The Case
57 years old, unemployed, male.
Medical history: alcoholism, fatty liver (noticed at age 30), type 2 diabetes, compression fracture, right sciatic fracture, macrocytic anemia (folate deficiency macrocytic anemia).
Recent medical history:
About 2 years before his death, he visited the Department of Internal Medicine, X Hospital, complaining of abdominal distension and leg pain due to lower leg edema, which made it difficult for him to walk. He was admitted to the hospital because of ascites caused by alcoholic cirrhosis. He was discharged on the 16th day of illness.

One year and seven months later, he was hospitalized for hematemesis after drinking alcohol. The hematemesis was due to ruptured esophageal varices. The patient was treated by hemostasis with a clip. Considering the activities of daily living）（ADL）, chemotherapy was started, but the patient was put on best support care (BSC) during the treatment. The patient felt he had been kicked in the foot, refused treatment, and continued to drink alcohol. Approximately two months later, the patient presented to the emergency room with increased left back pain. The pain was caused by compression of the Th6 nerve root due to a compression fracture. The patient was admitted to the hospital and the pain was controlled with opioids and steroids. On the 22nd day of hospitalization, the patient presented with confusion and fluttering tremor, which were diagnosed as hepatic encephalopathy based on various investigations, and drug therapy (laczulose, rifaximin, and BCAA preparations) was administered. The symptoms of hepatic encephalopathy improved. From the 44th day of admission, congestive heart failure with anemia and dyspnea was observed, and the patient was transfused with red blood cell concentrate. Her symptoms improved. However, the cause of the anemia could not be determined. The anemia progressed. The cause of the anemia was thought to be persistent or recurrent small bleeding in the gastrointestinal tract due to peptic ulcer or other causes. Dyspnea was observed on day 82, and Hb 2.4 g/dL was observed on day 83. He died on the 88th day of hospitalization.

2 Clinical Diagnosis and Treatment Issues

1) Is the cause of death consistent with pancreatic tail cancer? What was the status of invasion and metastasis of the cancer?
2) Ascites effusion, upper gastrointestinal bleeding, and hepatic encephalopathy were observed, but what was the degree of liver injury?
Is there a contradiction with hepatic encephalopathy in terms of clouded consciousness?
3) Was the progression of anemia due to gastrointestinal bleeding?　
 Has intertumoral hemorrhage been observed? Is spinal carcinomatosis possible?
4) Is the occurrence of dyspnea consistent with heart failure due to anemia progression?

A postmortem autopsy was scheduled while the patient was alive to address these questions. The conscious state of the patient confirmed that he was incapable of making his own decisions [6,7].

3 Addressing Ethical Issues

First, we asked a clinical ethics mediator from another institution to deliberate with the other institution's ethics committee about performing a pathological autopsy on this case, after obtaining approval from the hospital administration to confirm the validity of the pathological autopsy for deliberation with our own institution's ethics committee. The name of the deliberation study was "Postmortem Pathological Autopsy of a Terminal Stage Cancer Patient with No Relatives" [8].

This time, when the understanding and consent of the family could not be obtained in the end, the clinical ethics mediator and the attending physician team made a firm conclusion on the principle of biomedical ethics to respect the patient's wishes and the necessity of the argument that a pathological autopsy must be performed, and followed the procedure to obtain consent for a pathological autopsy. In this case, the purpose of the autopsy could hardly be achieved if we waited for the consent of the family because their whereabouts were unknown or they lived far away. As mentioned above, if it is clear that the purpose of the autopsy cannot be achieved, the autopsy may be performed if two or more physicians, including the attending physician, decide that it is necessary. However, in addition to emphasizing respect for autonomy in this indication, the procedures for how the decision is made by two or more physicians could be made more transparent so that responsibility does not fall on two or more physicians. We consulted an ethics mediator and reported to the ethics committee.

We also asked an outside committee member to increase transparency. We shared information about the case, such as age, gender, current level of awareness, understanding, judgment, etc., with the ethical standards and four principles at departmental conferences, multidisciplinary conferences of concerned parties, the hospital's ethics consultation team, etc., based on the ethical principles of sharing information about the case [9,10,11].  As a result, it was decided to record the fact that there was an argument for pathological autopsy by two or more doctors to clarify the pathological condition of the patient. In this case, on the advice of the ethics mediator, it was noted in the medical record that the doctors and nurses themselves contacted the family several times to try to confirm their wishes, even though they could not contact the missing sister (also noted in the nurses' record) [12,13]. Thus, by describing in the preliminary consultation that there was a procedure of explanation and consent process to the pathological autopsy for clarification of the pathological condition to the sister and the administrative caseworker, even if it is not so important to confirm the patient's living will when consenting to the pathological autopsy, it was still meaningful as a principle of respect for autonomy.

After preliminary consultations, the main review was conducted with the participation of internal and external members (lawyers and priests).

The ethics mediator suggested that the attending medical team perform a pathological autopsy using the four-compartment table proposed by Albert R. Jonsen et al. to organize the ethical issues of the case (Table 1) [14].

1) Continue the approach to the patient.

2） Respect the ACP (Advanced Care Planning) of the patient in question [15,16,17,18].

3）Communication of the fact that contact with the patient could not be made by all parties involved / notation in the medical record

4) Approval by the hospital organization of the appropriateness of the pathological autopsy and a decision/record of a review by at least two physicians, including the attending physician, as to whether or not the autopsy should be performed.

The results of this review are presented in Table 2. Based on the above process, pathological autopsy was considered ethically feasible and was performed. A comparison of the clinical diagnosis and the pathological autopsy is shown in Table 3. The patient had underlying alcoholic cirrhosis and diabetes mellitus with pancreatic tail carcinoma. He was 163 cm tall, weighed 42.9 kg, and his left pupil was dilated. The immediate cause of death was considered to be hemorrhage rather than cancer.