Lynna Chandra, founder of Rachel House. Photo by Don Wong.
A one-year project grew out to an 11 years commitment. Lynna Chandra founded Rachel House, the first palliative care service for terminally ill children in Indonesia. In addition to the home-based pediatric palliative care for children from marginalized communities, Rachel House actively provides palliative care training to medical professionals as well as community volunteers.
As a former UBS investment banker turned nonprofit founder, Lynna brought innovative pediatric palliative care in the medical field with no-medical background. She spoke with impactmania about the importance of children’s stories and being voted down by nurses.
BY PAKSY PLACKIS-CHENG
You started Rachel House after a friend, Rachel Clayton, died from cancer. Most people who lose friends, family members, usually don’t end up founding an organization. How did you go from investment banking to starting a non-profit?
After investment banking, I had my consulting firm, helping clients with mergers and acquisitions. At the same time, I was also moving into the world of meditation. I started spending most of my time in Sydney [Australia]. When I went for a first yoga and meditation course, the facilitator asked me, “Describe yourself.” I was telling him about my positions at the bank that I had just left. After ten minutes of taking him through the rest of my career, he said, “So tell me something about yourself.” I didn’t understand — I was all upset that he wasn’t listening. [Laughs.] I said, “I have just told you everything.” And he replied, “No, that’s your work.” That question actually set me off on a path where I thought, damn.
Then Rachel’s condition started deteriorating. I started spending a lot more time with her, a lot less with my work. I spent about two years with Rachel before she died. One of those moments, she got angry with her husband because he was nowhere to be found. When he turned up, she said, “Just send me to the hospice.” That was the first time I heard of the word “hospice.”
When Rachel died, I asked myself: How do people spend their last days when they don’t have the financial support that Rachel had. I visited an Indonesian hospital; I walked through hospitals in Thailand. I guess initially, it was more like a tour. And then, I visited the children’s ward filled with screaming children. The screaming children’s voices continued in my head for a long time, which eventually drove me to say, “Let’s spend a year of my life putting up a building.” In my mind a building would solve the problem.
Initially, my husband and I were thinking this is something that we can do ourselves. In hindsight, I realize that if I had lean on our own financial support, I would have given up a long time ago.
In my work with Ashoka, we meet a lot of social entrepreneurs who give up on the third year. Because you’ve lost your initial passion or conviction — the initial adrenaline. You’ve also lost your first wave of supporters.
We actually raised funds before we got out of the gate. We managed to raise funds from two big corporations and from 500 individuals. When things got rough and I wanted to give up, I couldn’t go back to each one of them and just return the funds. I couldn’t back out. I needed to pull through because I couldn’t disappoint the initial donors. As we entered deeper into that process, I saw more and more children, dying in horrific ways. Their faces then drove me and kept the passion alive.
After spending 11 years trying to make a difference in the community, what do you think are the ingredients required to drive social impact?
To actually step into the shoes of a person that you are going to help, or to immerse in the issue that you’re going to solve. In the third year of Rachel House when I wanted to give up, the owner of The Body Shop in Indonesia said, “You’ve chosen one of the toughest market to enter into: the market of children dying.” Doctors in Indonesia deny the existence of pain. I had also chosen a market that I had absolutely no understanding of. And yet I thought that just because we have the money, the knowledge in investment banking, it meant that we could go into the social sector and solve the problem and alleviate the pain of dying children. That’s probably the clearest example of the misconception I held, and possibly many of us who enter into the social sector.
It’s gutsy, though.
[Laughter]
How did you overcome the no-medical background factor? You hired the best and brightest people to support you?
In the banking world, I would have failed miserably in this particular project, because I had assumed doctors and nurses were naturally trained in alleviating pain. I reality, alleviating pain is not taught in most medical schools. They may get an hour out of the five years. When I started hiring nurses and I said, “Okay, we’re going to do palliative care.” They said, “Pallia-what?”
I went to the Ministry of Health in Indonesia and asked for a license to start a hospice. And they responded, “You mean hospital, right?”
There were no doctors and nurses trained in palliative care. I had to go to Singapore and rally support from the government and from the medical field. We had to send medical staff from Singapore to train staff in Indonesia. We started the first three-year training for doctors and nurses in palliative care, supported by Singapore International Foundation and sponsored by Singapore Ministry of Foreign Affairs. It started with 20 doctors and nurses from the pediatric oncology ward and our team.
That’s incredible. Did you have any Indonesian medical staff saying, “What do you think you’re doing? We’re doctors and you come in and think you’re going to train us?”
The former head of a medical department in Indonesia said to me, “How dare you spend money on the dying, when the living are still struggling?” The fact that I didn’t know what I was getting into and how tough it was going to be was probably a good thing.
It wouldn’t have happened, right?
No, had I known the challenges that we would face. I don’t think I would have even tried it.
What did you learn in investment banking that prepared you for founding a nonprofit?
I had a lot of connections in Indonesia we could call upon for help. We didn’t pay a single cent for the legal support that we’ve had throughout the 11 years of running Rachel House. The firm is still helping us today. We have had people joining our board like Jimmy [Masrin, CEO of Caturkarsa Megatunggal].
Also, in investment banking, we are taught to join the dots — how different elements could come together and bring a much more powerful solution. Without the for-profit world training, I wouldn’t have been able to bring the corporate world to participate in the building of Rachel House.
Give me an example of how you brought the corporate world to Rachel House.
Rachel House started because I wanted to build a hospice with a building, but the nurses voted me out. They eventually convinced me that there are more patients in the community at home than patients wanting to come in. Home care became the core of our service.
A lot of hospitals are referring patients to us. We also train the doctors to see and treat pain in their hospitals. In one of the largest hospital that we’ve been doing a lot of training in, a child was screaming because of extreme pain. On a scale of one to five, that child was screaming at six. A nurse saw the doctor walk past and said, “Why is this child left in pain?”
The doctor said, “I’ve called the anesthetist, sometimes they take about 24 hours to come.” Basically, I called so I have done my part.
Our nurse came back crying. We sat around a table with our team. The decision was made that we had to train mothers and women in the community, so that they know how to ask for painkillers. Unless people are aware of their options, doctors sometimes feel they don’t need to change.
We were suddenly thrown into training the community, which we weren’t prepared for cost-wise. I went to companies around the neighborhoods that we were conducting the training in. I said, “Whenever there is a demonstration, multinationals are usually the first ones that are pushed out by the community. If you want your neighbors to see you as one of them, why not host these training sessions in your company and pay for the food? Our nurses will conduct the training.”
That collaboration alleviated a lot of our costs, it helped our community to build, and at the same time, it helped the companies to be seen as part of the community.
What have you learned in the last 11 years?
I learned humility — a lot of it too. I learned that sometimes the solutions that I bring to the table are not the right solution. I learned to listen.
The people we’ve hired for Rachel House are from the community that we serve. They come in and they tell me what the problems are. And then, when I listen, I can apply my problem-solving mind. Without that first listening and understanding, and trying to really, really understand where the issue is coming from, I don’t think I could have brought that perspective and the solution to them. The first three to five years were humbling moments. My brute effort was sometimes not applicable.
Rachel House nurse playing with patient. Photo by Jason Tan.
You are moving toward a more global health care sphere after transition the day-to-day operations of Rachel House to an Executive Director and the team. You were in Salzburg for the Global Summit on Technology and Health. Tell me a bit about it.
The Salzburg Global Seminar holds several topics for discussion. Usually, on education, youth and development. I started participating in this last year on redesigning the care toward the end of life. That was still very much in the palliative care sphere that I’ve been working in.
In learning from what I’ve seen at Rachael House is that healthcare in general has to go through an incredible change if we are to truly meet the needs of people. So much has been written in various publications about how healthcare no longer understands the needs of the consumer it serves.
We failed to ask the key question, what really matters to people.
Give me an example.
At Rachel House, we saw many medical students going into the profession believing that health and dignity is something that we need to give to everyone. And yet, most leave medical school being taught only the scientific part, having been robbed of their humanity.
One of the medical students who interned at Rachel House said what he learned most while he was with us was witnessing the suffering patients and their families go through at home, bereft of any medical assistance. This opened his heart to the needs of patients beyond the walls of the hospital.
In the last 12 months, I’ve been traveling the world — working and learning. In Salzburg last December, the discussion was on the role of hospitals in delivering health and well-being to communities. I champion the lowering of the wall so to speak of hospitals — bringing hospital closer to the community.
I started to look at artificial intelligence (AI) and speaking with people who are purely in AI to see if there is a part for AI to play in helping people who are incapacitated or elderly people living at home alone. For example, AI can record and be the repository of the doctor’s discussions with the patient. So the patient doesn’t need to be the one who tells the home care nurse what’s been going on, because an elderly patient often forgets exactly what was discussed with the doctors.
It is technology as an element in health care.
Right. It can augment what is already there, but if humanity is not part of the care today, then sadly technology can only augment this lack of humanity.
We often discuss the future of …with interviewees: the future of work, the future of cities, and the future of design for example. Can you give me an example of healthcare in the future?
Health and well-being happens not only in medicine, it happens in the community. Medical professionals and healthcare are only part of that.
Robert Wood Johnson Foundation often talks about how health happens where you’re born, where you grow up, where you study, where you play, where you work. The Atlantic quoted that more than 50 percent of American healthcare expenses go to waste because we treat and we give patients more than what they want. Often, more than even what they need while we don’t even come close to matching what they desire as a quality of life, because we’d never asked that question.
As Atul Gawande said in one of his interviews, “We thought the fight was saving lives.” Sometimes the fight is just to get the patient to his granddaughter’s first trip to Disney World. That could have been possible had we asked the patient, but by the time we cared to ask the patient, the patient is two days away from dying.
I would like to imagine healthcare in the future to recognize and embrace the dignity in all and throughout one’s lifetime.
Do you think with technology, we’re actually intensifying the way we practice healthcare? It is no longer preventive; it’s no longer supportive. If we project forward, are we not focusing on the wrong things?
Yeah. I met the woman who started a medical records organization, serving insurance companies, focusing only the poorest. A population that the insurance company is just too glad to let go of, because these are a complicated group of population. What they found was that healthcare professionals don’t ask, “What is the most important part in your life, that could help healing?”
There was this woman, every time she was admitted, she got really depressed and so they pumped her with more drugs. No one figured out that she missed the closest thing to her, which was her cat. Where technology can help is with making diagnosis easier. Technology can make records a lot more accessible to different groups of professionals treating the patient no matter where the patient goes. What it doesn’t do is add quality advice to the patient or help bring a significant factor like the cat. Which in this case can actually add quality to the woman’s life, speed healing, and ultimately reduce the health care cost.
I often feel that we hold the medical field as the only problem solver. We forget that we have all given up our power to the medical professionals every time we go into the hospital. We are so afraid to be told that we have a certain diagnosis that may limit our life. We’re so afraid of death, which is certain that when we enter the medical sphere we become totally disempowered.
The Native American, aboriginals in Australia and New Zealand, and the Chinese all have this knowledge that is so deep. In fact, I just read an interview that you did with Yanling, the founder of OHDA. She mentioned that if you talk about Tai Chi and I Ching, most young people in China today will respond with, “Well, that’s old stuff.”
Yes, Yanling mentioned that she, similar to many contemporaries, was not in tune with her own heritage.
And yet therein lies a deep, deep knowledge. The understanding of the deeper knowledge of life we’ve lost as a community. Death is very much a part of the Native American culture — understanding death and dying is introduced to children. Unless you understand and come to terms with death you won’t begin to live.
Empowering the community to look after themselves — this is what Rachel House has done in our network. We train women who sometimes can’t even read or write, but we equip them with training. These women are walking in their community and connect with the primary healthcare professionals and help the person who is sick and their families navigate the healthcare system. When a patient gets discharged, these women volunteers provide the care at home just as a neighbor. Now they feel strong enough to go out there and say, “I have been trained” and somehow they see themselves differently. They have said, “We have a place in society.”
How many women have you trained?
In 2014 we were walking with only 20 women. To date we’ve trained 480 women and about 240 of them are still active. I am often in awe of these women because each of them look after three to four patients every week. They seek them out themselves, it’s all within walking distance. If a family needs to go to primary healthcare center that is outside their neighborhood, the woman volunteer will send a text message to another woman in the other neighborhood and say, “My patient and their family is going to pass your neighborhood, can you take over?”
Rachel House Community-Based Palliative Care volunteer with patient. Photo by Kartika Kurniasari.
That is quite remarkable. I interviewed the former Chair of the U.S. Federal Long-Term Care Commission. He spoke about dignity. You have mentioned it a few times as well.
Palliative care professionals put patient’s dignity and their family’s dignity as a key part of their profession. Family discussion is part of the process of the treatment that they give. I often wonder why is it that we only talk about dignity at the end of life? Perhaps it begins with the fact that at the end of life, we lose all of our control.
Yesterday, I spoke to a doctor who has an incredible heart. He was agonizing over the fact that he came in late on Christmas day to visit his patient who has final stage lung cancer. When he came in, he saw the nurses turning the patient. The patient was screaming and crying because of the pain. The protocol is to give patients painkillers and wait until the painkillers kicks in before we turn patients.
And I cite that as dignity, because we talk about what has happened to people in the medical profession? What’s happened to us when we no longer see suffering? Inherently within our soul, I believe we know that this is not right. This is not the way to treat somebody. The system has failed us as human beings, but the system is made of people, we must have allowed this to happen. We have allowed it to dictate our behavior and to make us act like machines.
How do you bring dignity back into this system that’s carried on all these years now?
When we started Rachel House, I didn’t know how to bring heart to nurses who I hired off the Indonesian system. If you research: Indonesia has one of the worst nursing education. Horrible deaths continues, doctors rarely admit that something went wrong or that they could have been done better. Because I’m not trained in the medical field, the only way I know is to ask for stories. I would ask our nurses, “Tell me more about this child. Did he used to play ball? Did he used to ride bicycles?” Because the nurses knew that I would ask questions like that, they would make it their business to ask these questions to the child and get to know him or her better.
By the time a child is admitted to our service, our nurses may only see the wounds, they see a child who can no longer speak, they only see a child with steroids pumped into his body and became so bloated that he no longer resembles who he was. However, deep down inside, there is still a dream and I wanted our nurses to hear these dreams. That storytelling has continued in Rachel House. That is the only way I could connect the nurse with the child.
We always ask our interviewees who’s had an impact on their professional DNA. Obviously Rachel had a lot to do with all of this, but who made you the person you are today?
I was born in Indonesia, but grew up in Melbourne and Singapore. My two brothers went to America and my father didn’t want me to be too far away so he sent me to Australia to live with a family. Verna and Charles had just become empty nesters. They thought they were receiving a child from a third world country. [Laughs.] I lived with Verna and Charles for five years. Verna died last year.
Verna taught me kindness through action. When the next-door mother was sick, she would go into the house, clean the house, wash the clothes, feed the children, and make sure that the children studied before she would come back to our house. Charles was a foundry worker and so he didn’t earn a lot of money, and yet most of their money was given away to help others. Verna made sure that every single day, she would sit with me for two to three hours after school. We’d talk about life. We would talk about what’s right, what’s wrong. She showed me compassion. She taught me that the more you’re given in life, the more you’re required to give back.
She convinced me to go back to Indonesia (after university) and work for one year, to get over a lot of my fears of Indonesia. Because she knew I didn’t know a single soul, she wrote me a letter every day, from the first day I arrived in Indonesia until the day I left Indonesia. She taught me pure humanity — the knowledge that we are fellow travelers on this Earth, and that we’re here for a brief moment, and our role is to help one another.
I cannot think of anyone else that has had a better impact maker…What a family you ended up with, that’s quite beautiful.
And in a life where there are no coincidences. I was hell bent on self-destruction. I felt like I was born in a family that was quite different from me. I didn’t understand that; I was just a misfit. That made it quite difficult in my early years. There was no common language.
Give me something that Verna said or wrote.
Verna had this poem by Ganda White, What If?
“What if our religion was each other?
If our practice was our life
If prayer was our words
What if the Temple was the Earth…”
Verna believed in the sacredness of the Earth. The poem ends with…
“If wisdom was self-knowledge?
If love was the center of our being.”
How different our world would look like.
Yes, perhaps someday we will come together and somehow build a stronger connected world.
