One Man’s Journey Into the Heart of End-Of-Life Care
I was lucky enough to have a deep conversation with Youske Eto, a hospice social worker in Oregon and faculty member of the Authentic Presence program. Youske was born in the U.S. and grew up in Japan, Germany, and the U.S. In college, he studied Leadership Studies and International Development. He then served in the Peace Corps in Ghana, West Africa, collaborating with local communities on projects to reverse deforestation. After the Peace Corps, he spent some time in Thailand, Nepal, India, and Japan before finding his way to a New York City hospice that set him on this 22-year-long career path in end-of-life care.
Interview with Youske Eto
Youske Eto
Crystal:
What led you to social work and end-of-life care?
Youske:
I think the real beginning of this journey was the visit I undertook with my parents to a concentration camp site called Bergen-Bersen in Germany when I was around 11 years old. I remember driving past an ominous military-looking area with a large wall and barbed wires. It seemed to go on forever. Finally, we came to an opening and a beautiful spot with a white brick building. It turned out to be a museum. I was the first to get out of the car and I rushed inside. The first thing I saw was a huge photo of a massive hole filled with dead bodies. I recall a feeling of utter confusion. I didn’t know what this photo or this place was about, but I felt a sense of curiosity along with a shock. I kept walking around and looking at all the photographs. It was a lot to take in. One photo in particular gave me a huge shock, as if I was being hit by lightning. I couldn’t stop looking at it. It was a small, black-and-white photo that showed another huge hole in the ground, nearly half-filled with bodies. There was a ledge going around the side of the hole, which was used as a walking path. At the end of the path, you could see two people facing against the wall of the hole, and on the other side of the big hole were two Nazi soldiers aiming rifles at them. The whole thing was designed so that when the victims got shot, they would drop into the hole. The soldiers didn’t have to do a thing. It was awful.
What shocked me the most, though, was that one of the soldiers was smiling. One part of me felt sickened – I couldn’t understand this. Another part of me couldn’t look away. I wondered: “what if I grew up in the environment this soldier grew up in? Could I guarantee to myself that I wouldn’t be the same as him?” The greatest shock was that I couldn’t say. That’s why I couldn’t detach myself from this picture…
“…And that was truly a troubling thought:
that this could be me.”
Crystal:
You mean, that you – or anyone of us – might have the capacity to do such horrors?
Youske:
Exactly. It might be me, if I grew up with the same parents or within the very same context. That was the original spark or instant that led me on the journey I am on today. I thought: “this can never happen again. I have to do everything I can to never let this happen again.”
Crystal:
That sounds like quite a defining moment.
Youske:
It was defining in every sense of the word. But it wasn’t until later, well after high school and into my early college years that I began looking closely at suffering, death, and compassion. After my time with the Peace Corps, I traveled to Calcutta, India.
In Calcutta, I volunteered for one of the facilities of the Missionaries of Charity, Mother Theresa’s mission. My experience there, working with boys and men who had experienced trauma or were neglected due to physical disabilities or mental illness, was life changing. Many had been found on the streets. It was amazing to see the kind of care and love they were shown by the religious brothers of the order. It wasn’t what they did, but how they did it that impressed me: they cared for people with so much love and respect!
Up to that point, I had wanted to help people by changing the systems, or outer environment, in which they lived. In Calcutta, I discovered that the internal environment is as important, if not more, in making a real difference in people’s quality of life. The people who stayed at the mission were still sick and still extremely poor. But you could see that as they stayed there, their sense of value, self-worth, and self-respect increased. I could see the difference. When I saw that, I knew I wanted that to be part of what I do.
Crystal:
Is this what brought you to end-of-life care, then? Were the brothers ministering to the dying?
Youske:
No, but after I finished my travels, I volunteered at Beth Israel Hospice in New York City, in the inpatient unit. Similarly to what I had experienced in Calcutta, the staff and volunteers tended to the physical, emotional and spiritual needs of people in ways that honored their dignity or personhood. There, I realized that social work was a perfect fit for me because it focuses on both the external and the internal environments of people. And so, I got my master’s degree in social work. That was 22 years ago, and here I am!
Crystal:
As you look back over your career and your own life, what would you say are the biggest unmet needs in end-of-life care?
Youske:
In terms of unmet needs, two things strike me most.
The first – is that we are not meeting the needs of people who are unhoused, traumatized, and living with mental illness. There are people whose lives are significantly impacted by trauma, including people with persistent mental health issues; some of them have experienced or experiencing homelessness and lack family or social support. Our medical system is not really equipped to deal with that very well, as it is difficult to provide good care when people don’t have stable housing. We need to set up a system where they can, if they choose to, have stable housing at the end of life, no matter their circumstances in terms of substance use behaviors or mental health issues. That’s a human right: to have housing and to be able to receive care as we are dying. That is a huge unmet need.
Crystal:
My heart breaks hearing this. This is such an important need: to receive care and have a safe shelter at the end of one’s life. And that is truly an unmet need in our society. But you mentioned a second need. What is that?
Youske:
I’d say the second unmet need is that, almost universally, people need to find ways to show more kindness to themselves.
Crystal:
Is that truly an unmet need?
Youske:
Yes, absolutely! I see so many people die with a heavy heart, unable to accept themselves, to be kind to themselves. We all have such needs for acceptance and love and kindness from others – and from ourselves. I would say that this is almost universally an unmet need. We don’t give ourselves the kindness we need to be able to honestly look at our life and ourselves without judgements, without harshness.
I also see the people who care for the dying – family members of the patients and caregivers alike. They all struggle in a similar way. People who are caring for others often want to be perfect, to be able to care for their loved ones tirelessly, without taking care of themselves. They burden themselves with unrealistic expectations, often staying at the bedside without proper sleep or running themselves ragged to take care of everything themselves. Sometimes they are torn by guilt or shame for something they said or did years ago. They reproach themselves for failing to be caring and loving enough. It is very sad.
Crystal:
How do you help family members and caregivers – or in fact all of us – with this?
Youske:
In our approach to end-of-life care, the contemplative approach to end-of-life care, we make a distinction between experiencing empathy and experiencing compassion. Empathy is a feeling: I am putting myself in the shoes of another person. This is a necessary and helpful step to compassion. However, as one enters the other person’s narrative, one also enters their suffering. This can easily make one feel helpless. For healthcare workers who are constantly confronted with such situations, it can become overwhelming.
Compassion goes deeper. In addition to entering someone else’s suffering, we tap into love and the ‘logic of compassion’. We see the situation from a much wider perspective. For example, when I am with someone who is afraid of death, I use empathy to try to enter that person's suffering so that I can understand it. At the same time, I know that she is not alone in that fear. It is in fact part of a greater human condition. As I see her alongside so many others, my heart opens wider, and almost naturally there is a sense of connection and love. This is what I mean by the ‘logic of compassion’: the perspective we gain from entering our common humanity and connecting with a kind of love and kindness that is part of our common humanity. We can actually connect with this huge love that is infinite.
I think this approach is helpful. It can help us care for others while also lending ourselves kindness. This is something we are not taught. We grow up learning that we should judge and criticize ourselves. Treating oneself kindly feels foreign to a lot of people. It feels selfish. But it is not! The source of our kindness for others is the same as the source of kindness for ourselves. If you are practicing kindness to yourself, you are tapping into kindness for others as well.
I was struck by Youske’s presence, by the generosity and compassion emanating from him. His words resonated with me long after the end of the interview. During our conversation, he shared some of his most defining experiences and exposed his thoughts on our need for kindness – especially towards oneself.
