[Special Feature: Thinking About "Home Care"] Supporting Home Care from the Hospital

I worked for about 25 years as a nurse at a large-scale hospital (approx. 800 beds) in Tokyo with acute care functions. For more than half of those years, I served as a middle manager and experienced various things that can happen within a hospital. At that time, even when inpatients wished to be discharged to their homes, I felt a sense of helplessness because they were unable to do so due to the local situation. While the work was rewarding, I felt biased because I only knew what happened inside the hospital, so I made up my mind to enroll in the Keio University Graduate School of Health Management. I remember that during the entrance exam interview, the professor who later became my seminar advisor was quite puzzled as to why I had gone so far as to resign from my job to take the exam.

During my two years in the Course for Health Care Management at the Graduate School of Health Management, I looked back on my experiences at the hospital, connected them with theory, organized them, and re-examined the value of what I had been practicing. Furthermore, in discussions both inside and outside of class where graduate students from various professions mixed together, I experienced the fact that my intentions were not always conveyed. I had intended to communicate my ideas until then, but I was made to realize that I lacked the ability to convey them to people in various professions other than nursing. Through interdisciplinary learning, I experienced the excitement of broadening my perspective. I also felt the joy of systematizing data obtained through practice and learned the basics of methods for demonstrating practical work theoretically. I am truly grateful that I am still able to be involved in interesting work because of these two years of learning.

After completing graduate school, I jumped into the field of home care and had the opportunity to be involved in the launch of a home care support clinic. Through the practice of home care at this clinic, which came to be noticed by the media for its pioneering efforts, I gained many lessons that shook the values I had cultivated within acute care hospitals.

The most striking thing was that people receiving home care, despite their pain and inconvenience, always spent their time with a smile, unlike the expressions of furrowed brows seen in hospitals. In a hospital, "medical care" is the main axis, but in home care, "the person's life" becomes the main axis. Although it is obvious, for me, having only worked in a hospital, it was a major paradigm shift.

While looking at hospitals from the standpoint of home care, I began to feel the issues within hospitals more strongly. In 2013, I became involved in supporting the transition from hospital to home at Kudanzaka Hospital, which was preparing for a fresh start with a new concept. I changed jobs with the hope that I, having experienced both acute care hospitals and home care, might be able to do something, however small.

Our hospital is a medium-sized hospital (251 beds) with acute and recovery phase functions located in Chiyoda Ward, Tokyo. In November 2015, it made a fresh start in a newly built hospital integrated with the Chiyoda Ward Comprehensive Support Center for the Elderly. After the relocation, our hospital took on functions different from before, and the hospital layout symbolizes this. The Chiyoda Ward Comprehensive Support Center for the Elderly and our hospital's Medical Liaison Department are separated only by lockers, with a layout that has no walls or doors. In such an environment, we respond daily to various consultations from ward officials regarding the gap between nursing care and medical care, and strive for cooperation. We also consider what kind of information the hospital can provide to the community, and conduct human resource training and awareness-raising activities for those involved in home care. This search for collaboration with various people from local governments and regional organizations requires us, as hospital staff, to expand not only into medical care but also into nursing care, welfare, and community activities.

To promote home care, the key is how to transition from inpatient treatment at a hospital, but what are the hurdles to transitioning to home care?

First, there is the awareness of hospital staff. Many medical professionals working in hospitals have no opportunity to know the actual situation of home care. Also, they cannot break away from the idea that continuing active treatment as much as possible is best, and that the hospital is an environment that can provide safety and security. For example, even if it is determined that discharge is possible after acute treatment, when it is predicted that the medical condition will become unstable in the future, they often think about transferring the patient to another medical institution. In the case of a two-person elderly household, they tend to assume that discharge to home is impossible due to concerns about the burden and push for admission to a facility. Furthermore, even if the patient strongly wishes to eat orally, there are still many medical professionals who believe that total fasting is best because it causes pneumonia, and that nutritional supplementation through central venous nutrition management or a gastrostomy tube (PEG) is the best method.

Even in end-of-life treatment, medical professionals who know that life can be prolonged if some kind of medical care is provided are afraid of the choice not to provide medical care. However, death comes to everyone eventually. For many people, isn't living peacefully and authentically until that time the thing they want to value most at the end of their lives?

My experience in home care made me realize that the original purpose of medical and nursing care is not limited to providing safe and active medical care, and above all, it is important to respect the person's decision-making. It became an opportunity for me to once again poignantly realize the importance of sincerely facing a patient's QOL (Quality of Life). In hospitals, I have often seen situations where the feelings of the family are prioritized without asking the person what they want. Even the obvious thing of prioritizing the person's wishes is not always prioritized when they become ill.

I tell the hospital medical staff to ask the patient about their thoughts repeatedly, even if the patient's state of consciousness is unstable. I am also working on study groups regarding supportive communication and end-of-life care, and systematic discharge support training for mid-career staff. Observation training at home care support clinics provides an opportunity to experience "authenticity" within daily life. Furthermore, we have started case study meetings based on the progress from before admission, during hospitalization, and after discharge, involving not only various hospital staff but also home care stakeholders, as an opportunity to think together about what "authenticity" means. Through these accumulated efforts, I hope to change the awareness of medical professionals within the hospital, even if only a little.

The second hurdle is the concern of patients and their families. Some people seek the sense of security of being hospitalized even after treatment is finished, due to worries such as "they might get pneumonia again" or "they might fall." While this trend of depending on hospitals is deep-rooted, it is necessary to recognize that as a result of continuing a safety-first hospital life, things that the person could originally do for themselves are taken away, which can lead to a decline in physical and cognitive functions.

Even as medical technology develops, there are diseases that cannot be cured, and there are times when treatment reaches its limits. However, I feel that a consciousness like a "hospital faith"—the belief that being in a hospital is best—is a hurdle to transitioning to home care.

The Ministry of Health, Labour and Welfare is also promoting home medical care, and although there are regional variations, a system for home care that receives medical support from visiting nurses and visiting physicians has been established. Also, if conditions such as age are met, long-term care insurance services can also be used.

Therefore, compared to before, if the patient and family have a desire to spend time at home, transition to home care is possible even if medical equipment is required. Of course, in home care, doctors and nurses cannot rush over immediately like in a hospital. It is necessary to be prepared for the time when only the patient and family are present, but the value of spending time authentically in one's familiar home, rather than a managed life in the extraordinary space of a hospital, is irreplaceable.

So, when connecting from a hospital to a home care medical institution upon discharge, on what basis should the selection be made? Having looked at hospitals from the standpoint of home care for several years, and now looking at various home care medical institutions from the standpoint of a hospital, I have come to think about this daily.

Ideally, in addition to the institution's specialty and the level of its system meeting the needs, the connection should be made within a relationship where they know each other's character. However, this is not realistic in the current situation where patients come not only from the neighborhood but from a wide area. When I request support, the two points I value are: being able to promptly share predictions of future physical changes in the condition and psychological changes, and being a medical professional who can empathize with the hesitation of the patient and family. People cannot prepare themselves so easily. People repeat their hesitations depending on changes in their medical condition. I believe that the success or failure of continuing home care is determined by whether there is a medical professional nearby who can empathize with that hesitation.

Since continuing home care also places a burden on the caregiving family, a system where the caregiving family can occasionally rest is also important. Because it is difficult for those requiring medical care to be handled by short stays under long-term care insurance, our hospital, in partnership with Chiyoda Ward, has established a system to regularly accept "medical stays" for those with high medical dependency. There is also a system to accept admissions as home care backup support for symptoms that would be unlikely to be targets for admission at advanced acute care hospitals like university hospitals when the medical condition temporarily worsens. To realize what is called "mostly at home, occasionally in the hospital" in community-based integrated care, it is important to establish and utilize such systems.

When transitioning to home care, families become anxious because they do not know how to respond, wondering who will provide care and what to do if the medical condition worsens. It is necessary to establish and communicate specific support systems and responses one by one with the person in charge of home care. However, the key to transitioning to home care lies in the person expressing in words how they want to spend their time, and whether the family understands that and wants to fulfill the person's feelings.

Let me introduce an experience from when I was at a home care support clinic. (Some facts have been changed in the description).

A man in his 80s had been repeatedly hospitalized and discharged for chronic heart failure. A request came from that university hospital to see if he could spend as much time as possible at home with the cooperation of a visiting physician. He spent some time at home, but his respiratory distress became severe, and emergency hospitalization could not be avoided. When he returned after being discharged from the university hospital, he said sadly, "Even if I'm taken by ambulance, treated, and discharged, I'll just get distressed again after a while. It's a repetition of the same thing. Even though I haven't done anything wrong." One day, his eldest daughter contacted us saying his respiratory distress had worsened, and I went for an emergency visit. The accompanying doctor asked, "If you are hospitalized again, your condition might temporarily improve, but it's also true that you'll feel unwell again in a short period. That's how tired your heart is. From now on, where do you want to spend your time?" The man replied in a strong tone, "Of course I want to spend it at home." The eldest daughter living with him seemed to have made up her mind after hearing his unwavering words of "I want to spend it at home." From then on, we continued support while collaborating with visiting nurses and the visiting physician, and he passed away as if sleeping at home on the night of the day after the New Year began.

Later, we heard from the family, "On New Year's Eve, we watched the Kohaku Uta Gassen together, and while writing New Year's cards, we talked about which relatives they were addressed to. After the New Year began, he was greeted by his grandchildren and smiled happily. I'm glad he could spend time as usual and that we could fulfill his wish to be at home." I was stunned that I had been obsessed with curative medicine until then, and this is an unforgettable experience that made me realize that supporting a person's way of life has a value that cannot be fully expressed by the word "medical care" alone.

As in this example, home care also plays the role of supporting the final moments of life.

Death inevitably comes to everyone, and we are certainly accumulating time toward that goal. And at some point, one may suddenly face a stage with only a few months left to live. Just as one has made various choices for oneself until then, it is desirable to be able to make choices for oneself even in that situation. However, the current reality is that few people think together with their families about how they want to spend the final stages of their lives. They are not used to thinking not only about where they want the place of care to be, but also about what kind of person they want to be at that time, who they want to spend that time with, and what they want to value. In Japan, there are almost no opportunities to take classes on "Thanatology" or "Death Education." Opportunities to think about death through religion are also scarce. Because of this, even at home, "taboo topics" (unlucky talk) are always kept at a distance. However, when the time comes and one is in a painful situation, it is difficult to answer when asked for the first time how one wants their end to be. It is also difficult for the family to talk with the person about it.

That is why I have come to believe it is important to have "what if" conversations about taboo topics while the time still seems far off. With that thought, I launched the "IKILU Thinking Group" with volunteers in 2017 and have been active since. The L in IKILU stands for Life.

As a way to create a place where each person can discuss "what ifs" for themselves and their loved ones as many times as they like while they are still healthy, we have held events where anyone can just drop by. we posted notices in the ward's public relations magazine and on bulletin boards at stations and convenience stores, and also promoted it to nearby universities. At the venue, we made posters using the words of the late Shigeaki Hinohara, Danshi Tatekawa, and Kirin Kiki, and also held mini-concerts with koto and violins, devising an atmosphere that made it easy for many people to stop by. The iACP (Institute of Advance Care Planning) is working to spread the "Moshi-Bana Game" (If-Then Cards), which allows people to think about and communicate what is important to them in the event of an emergency through a card game, and our group also played this card game with ward residents and university students. I was worried about the reaction of the young people, but I was moved by the sight of the university students taking it seriously.

Can't death be seen not as something to be blindly feared, but as a goal of having lived life to the fullest? If everyone living in the community can think about "what ifs" in advance while dealing with physical and mental functions that decline with age, and communicate that to the important people around them, medical professionals, and care providers—and if hospital and home care staff can connect and stay close with the family to make that happen—they will be able to spend a more peaceful time. I sincerely hope that fewer people will face that moment with furrowed brows, thinking, "This wasn't supposed to happen."