Hospice Stories With Maki
Posted by Meghna Banker on Jun 28, 2021
Thanks to some incredible transcribing elves, below is a lightly edited summary and partial transcript of the conversation, which spanned topics such as: What does dying teach us about living? What questions come to life on one's deathbed? What are the most common experiences people face at the end of life? What am I least willing to let go of, and why? How do the values of loved ones who've departed live on in our lives?
Dying can be a beautiful experience; although often viewed in somber, painful, or uncertainty, it is natural and inevitable. Maki began with the inspiration of her grandfather. At the age of six, the image of him attached to life support machines at the end of his life etched into her memory. "I couldn't realize that he was the same person. He had lost all of his identity,” she says. From that moment, a small seed was planted in her heart, and would continue into a lifelong quest spurred by the inquiry: "How can we die in peace?"
As a teen, during Maki's summer breaks from school, she served in a hospice full of laughter and saw a way to heal the fear. She says, “I saw a man die while watching TV, so peacefully and no one realized he had died.” She aims to make that path a reality for everybody. That quest lead her to medical school to become a physician. She sees how important it is to savor your values to the end, and to have caregivers and loved ones understand and respect what you value until the end.
Maki designs hospice/palliative care for the people with life-limiting illness to live fully and comfortably as possible. The hospice provides a caring environment for those dying of cancer. It is not a medical facility but a place to help people to choose their own way of life and medical care, to give hope to people who are in pain and suffering. They help those battling recurrent anxiety over their deteriorating health and impending death. People come to the hospice voluntarily. Some of the people just come and read books. Some come and talk about what they are feeling. Some try workshops that let them realize what they enjoy or what they like. People come solemnly. She says, “We listen and find out what they like to do, or what do they value in life ... Their faces relax and start to shine when they talk about what they like, or what they value.”
Maki pointed out the Japanese characters for both “painful and tough” and “joy” are the same, except that “joy” has one last horizontal stroke.
You matter to the last moment of your life. We do all we can to help you die peacefully, but also to live until that happens. Live well until you die; living and dying are so close…
Maki: One lady shut her eyes upon entering the hospice, saying, “I will spend my last days here. I don't want to be here.”
We told her, “This is your place. This is your room. Open your eyes and I hope we can meet." She then opened her eyes but her face was stiff. Every day, we talked to her: “What do you like? What do you value? We're here to support your life, not your death.” After a few weeks, she said, “Because I'm here, I want to live. I'm happy every day. I am not attached to my life, just I want to enjoy myself until the end of my days, as much as possible. I want to live, so please be with me.”
This shift happens. At first, people think that they're here to die, but it's not that they're here to die, but they're here to live. We really change their view.
Question: Your hospice has supported 200 individuals in the first year of its operations. The dying process is so different in different people. Are there any particular experiences of people's departures that stand out to you?
Maki: People’s wishes vary. For example, I wanted to relieve pain, and thought of that as a positive thing. I assumed that all people would want to ease their physical pain. Then, I met this man who refused to use painkillers.
“Why not let me alleviate your pain?" I asked.
“I have done bad things and my son knows that. The message I want to leave my son is that people who do bad things suffer at the end,” he explained.
People choose different options, depending on what they value. In another case, one lady was violently vomiting. There are ways to stop the vomiting. I wanted to help her but she refused my offer. “Why not allow me to stop this?”
She replied, “I want to die in a pure body, and for me, vomiting is letting go of impurities.” This lady vomited until death. Our staff and her family felt difficult emotions witnessing this wish carried out. We have to value the dying person’s wishes. This particular woman thanked us so much at the last stage of her life, for letting her do what she wanted.
Another woman had brain cancer. She was in her twenties. When she came to our hospice, she could not eat and she was wheelchair-bound. After a few weeks, she started eating and moving her legs. We took x-rays or CT scans. Her tumor had shrunk. I was so happy, and I thought she could go home and live her life. I went to her room to share the good news, but her face became sad and she said, “I don't want to live. That's why I came here.”
What is good and bad can differ from person to person. I realized that I need to listen to people, and value what they value, and not presume what's good for them. Taking away their agency may cause further suffering. Some patients are very kind and accept our offers, because they want to make us happy. That's why I created this kind of space -- to know what people value at the end, and to help them live peacefully until the last moment.
Still, in Japan, talking about death and dying is very difficult, so I'm trying to find a space to talk about life values. It's important not to wait to have this conversation when the decline to death has advanced. Let's talk about how we want to die when we are healthy and have hope. Let's get used to talking about dying. Let's normalize it so when the last stage comes, we don't need to talk about it, and we will know how to best proceed and accept.
There was this lady who had been living abroad for long time, and she got a call from her mom. Her mom was diagnosed with cancer so she came back. She brought her mother to our hospice at the very last stage. This woman had enjoyed her time with her mother, but now her mother was unable to talk or move like before. She said, “My mother is losing her role as my mother, more and more each day, because she's unable to do things. She's unable to talk to me like my mother. Even if she can't do or say anything, my mother is my mother. I honor her and continue to love her for who she was to me.”
Another lady admitted that our hospice couldn’t do what she wanted, so she was feeling heavy and tired. When night came, she slept because it was night and each day passed without her doing anything she wanted to do. Her life lost its meaning…In response to this, my colleague said that, until the last day we travel, we are in the process of becoming ourselves -- realizing new things and understanding ourselves more deeply. That is a meaningful reason to embrace life.
If we are able to notice something that we didn’t notice yesterday, and if that happens every day, then there is a meaning to life. We can evolve until our last moment.
This particular lady asked, “What is the meaning of my life?”
She did not have that question the day before; and this new question brought meaning to her existence … We can learn more about ourselves every day until the last moment of our lives. Especially in a hospice, people are not able to do what they want to, and subsequently they feel like they're losing themselves. Also, they sometimes do not say what they want to say.
Knowing yourself includes knowing the negative sides of yourself, or what we may think of as negative. For example, I may feel that letting people feed me is negative and makes me so rigid, but I need to accept it. When you are able to accept your weaknesses or a dark side and when the people who support you accept, true healing occurs, and this healing really helps you. If you can heal yourself by this kind of experience at the last stage of your life, you can die peacefully accepting yourself and loving yourself. Struggles can result in resolution. We learn so much through struggles. We learn what we did not know when we didn't have the struggles. We can come to thank the struggles for furthering the process of understanding ourselves.
The hospice is a healing place for the patient, their loved ones and our staff. A gift is like a dance, where you don't know who is giving and who's receiving.
Question: When you have a baby, and the infant tries to stand and walk; the child falls again and again, perhaps bumping into the corner of a table, because that infant wants to try to stand up and experience walking. I feel pained to observe the falling, but at the same time, I know that this is what the baby wants to do and I support that, because this is a natural process .
If I don't want to witness this hurt, I might belt him into a seat; that way, my child is spared pain of injury. I feel better, but is this really the best solution? What is true love? Dying calls for repeatedly listening to the one who is dying -- what they want and to try to honor their wishes…
In life, we experience all kinds of experiences in this physical body, then, once we die, we lose our physical body and we're not able to experience pain or sadness. We go into a different dimension.
Some staff may feel pained to witness suffering as somebody dies. We try to talk and heal ourselves so that we are not we’re not wounded and can heal others.
It’s very important to listen; there's this old lady who came to our hospice who told me that she wants to die. She said, “please, I don't want to live anymore. Please, help me die.” Even though that's her wish, that's not something I can do, but I can listen. I want to know why she wants to die. What is her suffering? Where does it come from? Once she confides her true feelings, they may change. She tells me she wants to see her son, but he doesn't come. This is her suffering. This is why she wishes to die. We listen to that and then work on that suffering. We are able to make a path where she stops desiring death and is able to live. She sheds her suffering as we listen, so it's very important to listen. I consider, am I listening to shallow wishes or a very a deep yearning? We try to recognize core values of each individual’s life.
Question: What other facets of your life are there besides hospice? You are a pediatrician and you currently serve as the director of a peace foundation, where, every year (when it's not a pandemic), tens of thousands of people gather at the foot of Mount Fuji to pray for world peace. You steward that. How do peace prayers and community work, or how does your experience as a doctor integrate into your work it in supporting those who are dying and vice versa?
Maki: I deeply connect with what I do. I pray everyday. We all have a divine spark within us, every human being. Our hearts have windows …When you meditate and have silent time alone, shutting yourself from outside world, you can connect deeply to your own self. I always know that I have spark within myself. It's important that I don't judge myself and that I am able to connect deeply with who I am. Once I can connect deeply with who I am, I can connect deeply with who you are, and with people who are in great pain or suffering. They test you to see how serious you are, or how committed … I am able to connect deeply to people who are in front of me because I always practice connecting deeply to my myself, so by creating peace within myself I can create peace outside of myself and create peaceful connections with people around me. I test myself and exercise myself and then from that feedback with my heart, I can develop new kind of programs.
Question: About twenty some odd years ago, when my father was very close to dying and he was not in any kind of hospice, my brother and I wanted to move him to where he could get care. You see, he was living by himself. I asked him, “What if you're walking across the street and get hit by a truck?” and he said, “I’d rather get hit by a truck than be confined someplace where I'm not free to do what I want." You said, the important thing is to listen to what the person wants. What if what the person wants is to go outside and be free and walk around but they're not capable of staying safe. How do you respond to that kind of situation?
Maki: This happens. We have hospice, House of Joy cancer center, and home care. This is very difficult. If the individual cannot live safely along at home, we need to ask him to come to our place. We create a schedule with a family, so that the individual can go home during the weekends, or when the if the family has holiday, we can send him home for a week or so. I am thinking of creating another place for people where there are nurses and volunteer supporters. Right now, we can only go to certain houses twice a day, in the morning and in the afternoon, just 30 minutes each time, because there are so many people we need to support… If the individual is able to live safely under these circumstances, we try to provide enough support for them to stay home. But if they are not able to stay at home safely, then we have to ask them to come to the hospice. We talk with their families.
Even if someone might die at home, some families want to keep that person at home. We try to create a situation with nurses coming twice a day. We cannot be sure that that person will be safe, when we are not there, but if that's okay with the family and the patient, then we choose that path. We try to allow that person to do as much as possible, while keeping them safe.
There is a physiological process people go through when they are dying. First, your muscular energy shuts down and next homeostasis shuts down like your kidneys lose function, and then your heart and lungs shut down. Lastly, the brain … it's much, much more complicated, but usually it goes down this way so I explain this to families.
What is the death and dying process? What can you do at this stage? I explain that dying is like when babies are born. They sleep all the time, and they only drink milk. Then, when they are a little bit bigger, they are able to sit. When there are little bigger yet, they're able to crawl and then stand up, and eventually, walk. They start with just milk and then they can drink vegetable juices and then, soft food and at last solid food.
The dying process this process in reverse. At first, people can stand and walk, but next, they are unable to walk anymore. Then, they are unable to stand. They just sit. Lastly, the individual is in bed awake, unable to speak and sleeping most of the time. They will be in grief for sure, but it's very important that they are not losing things that they are able to do, especially when they are still able to move and talk.
It is important for the family to know that there is a limited time when the patient is able to move. At that stage, I recommend taking them places, to restaurants, traveling and then, when they're bedridden but still able to talk, I recommend families to talk a lot. The family needs to prepare for the time to come, when their loved one will be able to listen, but unable to answer anymore. They will be angry, but it's very important that they feel the dying person feels they have done what they want to do during this last stage. Eventually, acceptance comes, and talk, and at last, the sleeping stage starts when they're unable to talk anymore. ... When a patient is unable to speak anymore, they're listening. When they die, the physical body is gone and, likewise, the person doesn't speak back to you.
Question: How do we create that space for conversations around death and what one values in families? In some countries, it is considered taboo to put a family member in palliative care.
Maki: I created value cards in Japanese. There are 49 values. “What do you value in your life?” is big question, so hard to answer. We need kind guidance to speak about what we value in our lives. These are colorful cards, facilitating conversations about death and dying by putting cards in front of you and stating your values. On the back of each card, there's a deeper question like, “What is the most painful experience that you have had?” You can consider what kind of pain hurts the most, spiritual pain or emotional or physical? Using these cards, I encourage families members to talk about death and dying, and I hope that people have these kinds of conversation before getting sick with a terminal illness, because it is much easier.
A conversation on death and dying is not necessarily painful or dark. Rather, it can be something that lets you connect deeply with a loved one. And, later on, you are able to hold this conversation anytime in your life with anyone. ...
Some families in Japan feel that they are supposed to take care of their elderly and dying parents at home. If they want to, that's good, but if they think they're supposed to, it becomes very difficult … One guy took three months off to care for his dying mother. He took really good care of her, changing diapers feeding her and so on. He became so tired waking up at night to take her to the toilet. He was so focused on taking physical care of mother that he became too tired for any precious conversations that mother and child could have at the end of his mother's life, so that grieving process becomes less.
He finally admitted his mother to our hospice because he had become overwhelmed and depressed taking care of his mother by himself. When he brought his mother in, he felt so sorry for her. After one week, he confided in me. He said, “I was not a professional changing diapers, bathing and feeding my mother. She is so happy because now, the professional people can do these things so painlessly, neatly and quickly. I am deeply thankful because now I am able to rest at night, so in the morning, I am able to smile at my mother and connect deeply with her."
Taking care of loved ones at the end, and letting others help you is important, because they're there to support you. Getting help creates time to smile, and smiles are very important. :) So I talk to families facing difficult choices, and ask them to consider what makes their dying loved one smile, and try to create a situation that makes that person smile.
If your mother prefers you to take care of her, and she's smiling, then I think she can stay at home. But if your mother is starting to have a stiff face, then it's time to think about changing the care responsibilities.
It is very important to listen and observe facial expressions to see what is good for the dying person. There was this young lady who was around thirty years old, taking care of her mother, who had brain cancer when she was about 60 years-old. She was told that her mother had six months to live, so she left her job to care for her mother. That was five years ago. One week a month, she rests but when she was in our hospice, the daughter confessed, “I am 30 years-old, and I haven’t worked or had a life outside of this care routine for five years. I don't know how long this will take; and I hate to say this, but I am hoping she will die soon. I don't know where that hope came from."
This woman needs to consider her own happiness, because surely her mother wants her to be happy as well. While it's important that you value your mother and father, it's also important that you value yourself as much. To be a good caregiver, you need to value yourself.
Question: Are there common regrets people have about their lives at the end. Also how do you talk to children about death?
Maki: I also wish to know how this taboo about talking about death came to be. :) Maybe because it was taken away from home to the hospital, so we can no longer witness the process. I cannot answer these questions right now. I hope, in future I can.
In Japan, there was a survey where 70% of respondents expressed regret over not trying more things in their lives. The didn't regret things they did, even if it they made mistakes or hurt somebody … at the House of Joy, when the people are diagnosed with cancer, they say something like "I'm 50 years old, I'm working, and after I retire, I wanted to go traveling, but now I have terminal cancer. I regret that I did not travel. I recommend children spend time with the elderly so that they can witness the process of decline… not through reason or intellect, but through the heart. I hope young people can all experience what it means to age, and what it means to not to be able to do things anymore, and that it's natural to die and to not fear death.
Children also need to feel that it is ok to talk about death and dying and and that they can talk about their feelings about death and dying in a relaxed atmosphere. I like to use value cards to listen to what they value in their lives because we don't know we our lives will end. At a young age, children think that they are one unit with their mothers, so when they fall, they look at their mothers to know how to react, up to around age five. They don't cry instantly but look at their mothers to know how to react, because they feel they are one unit, but by the time they become fifth or sixth graders, they start to understand that they are separate different beings from their mothers, and they start to understand that their mothers most probably will not be with them forever -- that, one day, their mothers will pass away. This seed of a thought generates fear about death, because the thought of losing one's mother can be terrifying to a child. It is so important that you are able to have that talk to children, ease their minds and let them express their fears. Be prepared, when the children ask you about this, that you are able to answer. How we react to our fear sets a benchmark. Children either will come out of that conversation feeling, “Oh, I should not talk about this anymore as it upsets mother,” or feeling at peace with things.
Question: My sister was pronounced dead, but an hour later her heart beat came came back with normal blood pressure for a further 12 hours then she died. How do you explain that?
Maki: I believe people choose the time and situation to die, I truly believe that. I've seen some families arrange a 24-hour bedside vigil, taking shifts. Then, in the minutes when they are changing shift, the individual passes. The families are like, "Why did that happen? We didn't want her to be alone in dying, so we were there, but in those two minutes, she left us."
Some patients do not want to show their weakness or show how much pain they are in. I believe that they choose the time to quietly face their own deaths by themselves. Some patients become well, so they need to transfer to a different place. For example, one lady really liked our place, and was so sad when she heard she had to go to different place. On the day that she was supposed to move to a different facility, her heart stopped.
Some patients tell me, "I think I'm going to die," when their departure time draws near; or that a close family member (who has already passed away) has appeared to guide them to the other side.
The last physical sense we lose is hearing, so even though a dying person doesn't open their eyes or speak, they hear and receive blessings, and decide when to go.
Question: What about the regrets and grief when you can't do anything, perhaps due to situations and protocols? For example, my mother caught Covid-19 and a doctor insisted on hospitalization. We got her a hospital bed, but the hospital was short-staffed and could not accept visitors. We were dependent on the doctors … we followed the doctor’s orders, then my mother died, and we are left wondering if she wanted to say something before leaving, but we were not there by her side. I can’t help thinking it would have been better not to have sent her to the hospital.
Maki: Covid-19 victims are healthy, then all of a sudden they are fighting severe symptoms. Some die. It’s a natural disaster happening to the human population that has suddenly arisen. So many just lose loved ones but are not able to physically be there for them at the end. It's very difficult to accept and understand the situation. It is important that we prepare ourselves for grieving to happen, but sometimes, it's not possible…
Think back to all those times with your mother, and assemble them like a puzzle to make a whole picture of what she wanted to give to you, the words and wisdom that she wanted to give -- she has been doing that, throughout her life. It takes time. Accept and send gratitude to your mother in prayers. She was good and loving to you, so that you are feeling so much grief now. Write down all the messages, memories -- by connecting these puzzle pieces you can know much more than her last words about herself, and her love, and what her existence was to you, why she lived; a bit of her spirit, soul, existence remains with you. You can listen to her anytime you want to, anywhere; she has become closer to you … some day you may feel so much closer to her than before, because you are together with her now.
Her way of dying may have stirred you to feel regretful, but her existence is not.
Eventually you too will die and then you can make a different kind of connection with her.
Comment: More than 3.8 million people have died of Covid as of today (June 13, 2021); it's a really precious time we're in. To accept a person for who they are, that is a true healing, and to appreciate oneself.
No one here has experienced death, and we are all going to, which means that there is no right and wrong answers to the topics of death and dying. Let’s voice and accept the range of feelings on the topics of death so we can totally be free from labels and say anything we want to say.