[Special Feature: Thinking about a "Society of Many Deaths"] 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 licensed 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% pass away at the hospital. It is a long-term care facility that serves as a "final home." The hospital was opened in 1980 with 147 beds by its founder, Nobuo Otsuka, with the goal of creating a "facility where I would feel safe entrusting my own parents."

At that time, geriatric hospitals had a strong image of being dark, dirty, and smelly. However, we 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. We have developed various systems with a focus on ensuring that families do not have to feel guilty after admission. Furthermore, he stated that the quality of the staff is the greatest challenge in realizing 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 death in the face and aimed to ensure that neither the individuals nor their families had any regrets. We worked as a multidisciplinary team with the goal of "creating a rich final stage of life" to leave a positive lasting impression on everyone involved after a patient passes away. What our 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 a short while ago, there was an era when "talking about death is bad luck" and the subject was avoided. 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 their 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 in terms of chronological age. That is precisely why our hospital has provided care while facing death. We believe this is not merely "looking after" someone, but the practice of end-of-life care that aims to maintain the maximum quality of life 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 for whom death is imminent," in North America it is viewed broadly as "a period spanning years that begins from the point when patients, families, and healthcare providers 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 "final 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 toileting 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 for maintaining dignity. I believe that the care we have provided at our 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, stepping in more than necessary is not necessarily good care. Rather than 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 should not look at the super-elderly as "people with illnesses," but as "people living their lives." 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 physical conditions caused by excessive rest or decreased activity). In other words, by not moving, existing functions decline and one becomes 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 swallow (deglutition) also weakens. If joints are not moved, they stiffen and become immobile. It hurts when you try to move them. Moving the body also leads to preventing joint contractures and pain, and 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 most important 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. While I am told by a senior nurse who has reached 80 that "you're still a fledgling," and I think so myself, there was more conflict than I imagined in accepting the first 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 so 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. It is precisely because we care for people living in an unknown world that I believe we need to keep thinking. I believe 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 real thrill of super-elderly care. There are aspects that are incompatible with values that seek efficiency and time-effectiveness. How to communicate 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—grooming, toileting care that considers shame, meals where even a single mouthful is savored, and a human-like appearance without contractures—supports dignity as a person. It is nothing 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 facility. In a sense, in the current situation where eyes tend to be focused 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 began development of the "End-of-Life Nursing Education Consortium-Japan Geriatrics Curriculum Instructor's Guide (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, ELNEC-Critical Care, and ELNEC-Geriatric, which have spread to 101 countries around the world.*6

In Japan, the Japanese Society for Palliative Medicine developed the ELNEC-Japan Core Curriculum Train-the-Trainer Program (ELNEC-J Core), which is the Japanese version of ELNEC-Core, and has been holding the ELNEC-J Core Curriculum Train-the-Trainer Program since 2009. Japan also cooperated in the development of ELNEC-J Core, but it is the world's longest-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 that is in line with Japanese culture together with nurses in the field of practice, thinking that I wanted to contribute to guaranteeing the quality of end-of-life care for the elderly in Japan, and 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 being 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 also means that a time will eventually come when one lives with the help of others.

In that process, those responsible for care harbor hesitation 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, which are difficult to express in words. As it becomes difficult to indicate one's will in words, are we able to continue interacting with that person as a "being with a will"? In modern society, where efficiency and productivity are emphasized, this question is by no means a problem only for the field. 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 of 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 in the field while continuing 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 that my life "was good as it was."

(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 Medical Corporation Keiseikai, with whom I have accumulated daily practice, as well as the ELNEC-JG project members.

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