[Special Feature: Thinking about a "Multi-Death Society"] Miyoko Kuwata: Creating a Rich Final Stage of Life—Nursing and Care that Supports the Lives of the Super-Elderly in Their Final Years

Ome Keiyu Hospital (hereinafter referred to as "the hospital") has 526 authorized beds. The average age of inpatients is approximately 90 years, the average length of stay is 3 years and 4 months, 90% have dementia, and 60% are discharged upon death. It is a long-term care bed facility that serves as a "final abode." The hospital was opened in 1980 with 147 beds by founder Nobuo Otsuka, with the goal of creating a "facility where I could feel safe entrusting my own parents."

At that time, geriatric hospitals had a strong image of being dark, dirty, and smelly. However, he aimed to wipe out that image and provide solid care until the very end for families who wanted to, or felt they should, look after their loved ones themselves. Various systems were created with a focus on realizing a response that would prevent family members from feeling guilty after admission. He stated that the quality of staff is the greatest challenge to achieving a "rich final stage of life."

I joined the hospital in 1994, the year Japan's aging rate exceeded 14% and the country entered an "aging society."

Thirty years ago, while death was still a taboo subject, our hospital looked ahead to death and aimed to ensure that the individuals and their families had no regrets. We worked toward the goal of "creating a rich final stage of life" as a multidisciplinary team, aiming to leave a positive lasting impression on everyone involved after the person passed away. What the hospital has valued is not just dying well, but care that supports living out the time in one's final years to the fullest.

Recently, the term "shukatsu" (end-of-life planning) has become widely used, but until recently, there was an era when talking about death was avoided as being "unlucky." At our hospital, upon admission, we ask, "When was the most brilliant period of your life?" This is to learn about their past lives, habits, hobbies, and wishes, and to apply this to daily care. Based on the life of each super-elderly person, we have considered the best care for that individual.

People sometimes say they want to die a "pin-pin korori" (dying suddenly after a long, healthy life), but that is by no means easy. Humans are beings who will inevitably face death, and for the super-elderly, it cannot be denied that death is close even in terms of chronological age. That is precisely why our hospital has provided care while looking ahead to death. We believe this is not mere "looking after" someone, but the practice of end-of-life care that aims to maintain the quality of life to the maximum until the very end.*1

The term end-of-life care began to be used in the United States in the 1990s. While in Europe it is defined relatively narrowly as "comprehensive care provided to patients whose death is imminent," in North America it is viewed broadly as "a period spanning years that begins from the point when the patient, family, and medical professionals become aware of death."*2 In the care of the super-elderly, especially those with dementia, it is difficult to clearly indicate when the goal will arrive. Even in the Japan Geriatrics Society's "Position Statement on Medical Care and Care at the End of Life for the Elderly," the "end stage of life" is not defined by numerical values.*3

In the accumulation of the same tasks, such as assistance with meals three times a day and repeated excretion care, one can sometimes lose sight of the meaning of care. However, the essence of end-of-life care is said to be valuing the quality of life until the end and supporting the person so they can experience a "good death."*4 For the super-elderly, more than the latest or best medical treatment, it is meticulous daily care that is valuable care that maintains dignity. I believe that the care we have provided at this hospital has been exactly that practice.

Nursing and caregiving staff tend to focus on what the super-elderly "cannot do." For example, "they cannot eat by themselves" or "they cannot walk by themselves." However, it is important to have a perspective that focuses on remaining functions, such as "they cannot carry food to their mouth, but they can chew" or "walking is difficult, but they can transfer to the toilet seat." By looking at what they can do now rather than what they cannot do, we can notice their remaining functions.

Furthermore, providing more help than necessary is not always good care. Instead of taking everything away because it is dangerous, we have them do what they can. I feel that continuing to utilize those functions leads to supporting a "sense of being alive." We do not look at the super-elderly as "people with illnesses," but as "people living their lives." We have them do what they can do themselves. It is important not to take away what they can do just because it is dangerous.

The super-elderly often have multiple diseases and disabilities. When the stage of a disease is acute, it is natural that the focus is on medical treatment. However, bed rest is highly likely to cause disuse syndrome (various conditions that occur in the body due to excessive rest or decreased activity). In other words, by not moving, the functions one has will decline, and one will become unable to move. Moving is not just about walking. It includes swallowing, moving joints, and eating by mouth to move organs. By not eating by mouth, the power to chew and the power to swallow (deglutition) also weaken. If joints are not moved, they will stiffen and become immobile. It hurts when trying to move them. Moving the body prevents joint contractures and pain, and leads to maintaining a human-like appearance. There are days when it feels like a chore. Even so, if you don't move, you will become unable to move. If you don't eat, you will become unable to eat. Supporting that obvious reality meticulously as something obvious is the foundation for creating peaceful days.*5

For the super-elderly, a secure environment is not determined solely by the newness of equipment or buildings. What is more important than anything else is the presence of the people they interact with daily. Facial expressions, the way one speaks, the way one touches, the posture of waiting—each of these shapes a sense of security for that person. Only when the human environment is in place can the super-elderly spend their time in their own way. I believe that the key to creating a secure environment always lies in "people."

I have now reached the age referred to as the young-old. A senior nurse who turned 80 told me, "You're still a fledgling," and while I think so myself, there was more conflict than I imagined in accepting the step toward aging. This is because the "aging" I had pictured in my head was different from the aging I am actually experiencing. Growth and development are processes where the things one can do increase. On the other hand, aging and senescence are processes where one loses the things one could do, one by one. Accepting that loss is by no means easy. I find myself whispering in my heart, "I used to be able to do this easily..."

At our hospital, we value thinking by replacing the situation with "if it were my own parent" or "if it were me." However, there are limits to imagination. The world experienced by the super-elderly, who are the subjects of care, is an unknown world that exceeds the imagination of the caregiver. Precisely because we care for people living in an unknown world, I believe we need to keep thinking. I think it is best to discard all one's preconceptions and interact with the feeling of being taught by the super-elderly over a long period of time. By thinking, thinking, and thinking as a multidisciplinary team, for the first time, we begin to understand what the super-elderly are seeking and what we can do. I believe that is also the true pleasure of caring for the super-elderly. There are aspects that are incompatible with values that seek efficiency and time-effectiveness. How to convey that value is also a major challenge.

What I consider "peaceful" is not a special tranquility, but a state where daily care is accumulated without stagnation. I cannot give a clear answer as to what is peaceful. Nevertheless, through 30 years of practice, I am convinced that the accumulation of such daily care—tidying one's appearance, excretion care that considers a sense of shame, eating even a single mouthful, and a human-like appearance without contractures—supports dignity as a person. It is not something special. Rather, it is "obvious" care. However, when that obvious care stagnates, peaceful days are lost. I am convinced that the peaceful final years of the super-elderly are created by daily care, and that care itself is the most valuable care.

While the Certified Nurse Specialist system of the Japanese Nursing Association was being established, I received certification as a "Certified Nurse Specialist in Gerontological Nursing" in 2003. The reason I sought certification was that I wanted to communicate the care for the super-elderly accumulated at our hospital to society, rather than keeping it only within the clinical site. In a sense, amid the current situation where eyes tend to focus only on advanced medical care, I also had a wish for medical professionals to understand that "it is the repeated daily care that maintains the dignity of the super-elderly." Facing death, which is on the extension of aging, is by no means something special. When one becomes a recipient of care, one will realize the importance of daily care.

For three years starting in 2011, with a grant from the Sasakawa Health Foundation, I embarked on the development of the "End-of-Life Nursing Education Consortium-Japan Geriatrics Curriculum Guide for Instructors (ELNEC-JG)."

ELNEC (End-of-Life Nursing Education Consortium) is an educational program established in the United States in 2000 with the aim of acquiring the competencies necessary for nurses providing end-of-life care and palliative care, and it has now spread to over 100 countries worldwide. There are curricula such as ELNEC-Core, ELNEC-Pediatric Palliative Care (pediatrics), ELNEC-Critical Care (acute phase), and ELNEC-Geriatric (gerontology), which have spread to 101 countries worldwide.*6

In our country, the Japanese Society for Palliative Medicine developed the ELNEC-Japan Core Curriculum Instructor Training Program (ELNEC-J Core), which is the Japanese version of ELNEC-Core, and has been holding the ELNEC-J Core Curriculum Instructor Training Program since 2009. Japan also cooperated in the development of ELNEC-J Core, but it is the world's most long-lived country, an experience no other country has had. I created this program with the aim of creating end-of-life care for the elderly suited to Japanese culture together with nurses at the practice site, thinking that I wanted to contribute to guaranteeing the quality of end-of-life care for the elderly in Japan, and that I wanted to convey that the meticulous care provided daily by nursing and caregiving staff is valuable care that leads to the maintenance of the dignity of the elderly.

Since 2014, the "ELNEC-JG Curriculum Nurse Education Program" has been held under the sponsorship of the Japan Academy of Gerontological Nursing. While being involved in this process, I have once again realized the importance of education rooted in practice. Furthermore, the effectiveness of these educational programs has been verified through collaboration with researchers, and the results have been published in academic journals.*7

Furthermore, since 2018, efforts to train instructors have also been underway as a system to continuously implement this program in each region. For details, please refer to the Japan Academy of Gerontological Nursing website and the ELNEC-JG Curriculum Portal Site.*8

Is super-elderly care perhaps perceived as "just looking after" someone? While one is living independently, the pain of living with the help of others is difficult to be conscious of. However, becoming a super-elderly person means that a time will eventually come when one lives with the help of others.

In that process, those responsible for care harbor doubts and questions in their daily practice. The feeling of "Is this okay?" is proof that one's sensitivity as a professional is working, and it is not something to be denied. This "haziness" is an ethical question rooted in daily practice that arises while trying to notice the voices of the super-elderly that are difficult to express as words. As it becomes difficult to indicate intentions with words, are we able to continue interacting with that person as a "being with intentions"? In modern society, where efficiency and productivity are emphasized, this question is by no means a problem only for the clinical site. The question of how to support the lives of the super-elderly in their final years is one that will eventually return to ourselves, and it is a valuable practice that society as a whole should continue to think about as its own affair.

In January last year, I saw my mother through to the end at our hospital. Since being diagnosed with Lewy body dementia in 2013, I provided care at home for over 10 years and witnessed through my mother the suffering that people with dementia face. Also, by experiencing the position of a family member, the way I see care has changed significantly. That is precisely why I want to continue to value what is happening at the site and continue to communicate its meaning to society. This is because I myself wish to live a rich final stage of life and face the end while thinking of my own life, "I'm glad it was this way."

(Acknowledgments) In writing this article, I would like to express my gratitude to Professor Hiroki Fukahori of the Keio University Faculty of Nursing and Medical Care for his advice. I would also like to express my heartfelt gratitude to the staff of Keiseikai Medical Corporation, with whom I have accumulated daily practice, as well as the ELNEC-JG project members.

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