人と人がつなぐ医療のかたち　Hands-on Healthcare Service Provider

Introduction

“Medical care (healthcare) creates a connection with people,” Medical Column by Medi Legato Vol. 2 We are pleased to introduce Dr. Masaru Miyaki, who is the Chair of the Board of Directors, Kaedenokaze Medical Corporation (incorporated in Japan under the Medical Care Act). Dr. Miyaki and I were in the same year at our MBA school. He is also an advisory member for Medi Legato.
Dr. Miyaki has been researching on health management and health information at the Graduate School of Medicine and Faculty of Medicine at Kyoto University, School of Public Health, since April 2015. We had the opportunity to comprehend his thoughts on how medical workers share and support patients and their families in cases where the patients wish to experience end of life care at home. In addition, Dr. Miyaki spoke about the importance of respecting the patient’s will and taking the approach of shared decision making.

Sonoko Hirose　President & CEO　Medi Legato

Interview

－Why did you begin working for hospices and in-home care fields as a doctor?

I was in charge of emergency medical services at Keio University Hospital after graduating from the Kagoshima University Faculty of Medicine. Thereafter, I sought to work as a physician to keep my skills up to date. Through my work at Kawasaki Municipal Hospital, I realized the importance of management and leadership. Therefore, I started attending an MBA school in addition to working. I had the desire to reform medical care and the medical system in Japan. Additionally, I met Mr. Takayuki Komuro, who is the president of the corporated non-profit organization Kaedenokaze, which provides day service and home care. His passionate appeal “Let’s change society together” inspired me to initiate my work on home hospice care.

－What are the challenges of creating an alliance with hospitals in the community?

We currently accept about 210 patients (a year) who wish to participate in home care through Kaedenokaze. The estimated number of patients who pass away at home is 20 per month.
Although passing away at home was a common occurrence in society before the war, deaths often take place at a hospital now. Some hospital staff report feeling sorry if they send home cancer patients who are in pain and are close to the end of life. As a medical worker, I understand their feelings; they have a strong desire to focus on treatment and caring for their patients’ needs even until death. Yet, we believe that medical staff should respect patients’ wishes and play a supporting role for patients and their families when the patients wish to spend the end of their lives at home.

We, as medical workers in the homecare services, actively participate in study sessions held by hospitals in the community, and we place a high value on communicating face-to-face. This is because trust relationships are built on the patient’s trust in a particular doctor or nurse. We also believe it is impossible to coordinate care effectively using only a liaison, such as an office representative instead of the doctor.

－What is your future dream and goal as a doctor?

I am thinking about opening a “community open hospice.” I would like to create an open hospice that is not isolated from society but offers a place where patients and their families can continue participating as active members of the community even at the end of their lives.

Message

Cancer, cardiac disease, vascular brain disease, and pneumonia are currently the leading causes of death in Japan, and there are no significant changes in these tendencies. Until 1975, more than half the patients with these conditions received treatment at home and passed away under their family’s care. Receiving end of life care at a hospital is a new trend.

In light of Japan’s aging society, the high mortality rate is a serious issue. About 120,000 fatalities are reported in a year, and this number is estimated to reach 400,000 soon. The number of patients who need home care is expected to increase owing to the difficulty of finding a place for patient care services.

The Japanese government plans to build a community general caring system that will provide integrated living, care, disease prevention, and life support. With respect to medical care, the government also stipulates the enhancement of home care and home nursing care. According to the survey on terminal care (Ministry of Health, Labour and Welfare 2008), over 60% of the respondents wish they could receive medical treatment at home in their terminal stages, implying the increasing need for home care. Conversely, families wish for medical treatment to be provided at medical institutions. This thought represents a gap in the way of thinking between patients and their families. The main reasons for this gap include concern about providing support in case of an emergency, and the burden on family members who provide care. Therefore, it is essential to respond appropriately and resolve concerns regarding home care. For patients to receive home care, hospitals, visiting care clinics, home nursing stations, and visiting pharmacies need to cooperate and resolve any problems.

WHO defines pain as physical pain (physical symptoms), emotional distress (anxiety, depression), social distress (the meaning of life), and psychological distress (work, the economy, and family issues). However, the types of pain that doctors can resolve through active initiatives are limited.

Therefore, an approach that is based on not only the direction provided by doctors but also thinking together in order to find solutions is required. It is important to encourage a paradigm shift from the notion that patients are a vulnerable group to be protected or that their unhappiness is inevitable to the concept that they are independent, socially strong members of society who are able to feel appreciation and happiness in life and who understand the importance of living well because they have experienced the deaths of friends and loved ones. First, we, as medical workers, should support patients’ desires to live in the way they choose and take into account the wishes of both the patients and their families. Although it is difficult to obtain relief from the condition of illness, whether in a hospital or at home, we believe that all people see the meaning of life in experiencing or witnessing death and can be strong in the process.

The concept of “informed consent” is popular in medical fields in Japan. Informed consent is often described as an “explanation and consent” in Japanese. However, the truth is that medical workers tend to merely explain the course of treatment they have already selected, and patients agree to it. In this situation, the implication is that there is no option to consider the will of the patient’s family. There is a hierarchy in which medical workers have authority and patients and families follow their decisions. Yet, should the lives that patients and their families have built and their future be decided without regard for their own will? Certainly not!

The notion of “shared decision making” is gaining popularity in Western countries. According to Dr. Kazuhiko Fujisaki at the Medical Education Development Center, Gifu University, in this approach, the physician in charge conveys his or her opinions, including suggestions, and gives an explanation of the patient’s medical condition, and then, in making medical decisions, takes into account the condition and will of the patient’s family.

A patient’s family members also need opportunities to share their conditions, wishes, and concerns with physicians. This allows them to forge a common ground and find solutions together. We recognize this as the way of thinking behind original medical care. This approach is used for the treatment, for instance, of verruca and diabetes that do not influence life prognoses in Western countries. Although it is not used for deciding courses of treatment such as operating on a patient with cancer, for example, it may be expanded into such treatment areas in the future.

Precious life. We believe that being able to make our own choices even at the end of life enriches our quality of life.