Rancho Palos Verdes resident offers treatment ‘beyond the grief’
For children who have run out of medical options, Dr. Glen Komatsu of TrinityCare Hospice offers a listening ear
by Ryan McDonald
For Dr. Glen Komatsu, the most valuable tool a doctor can have is a good pair of ears.
Komatsu is the chief medical officer for Providence TrinityCare Hospice, and the medical director of Providence’s TrinityKids Care, the only dedicated pediatric hospice program for all of Los Angeles and Orange counties, an area of more than 13 million people. The Rancho Palos Verdes resident is convinced that doctors need to do a better job asking basic questions, and listening to the responses.
“Sometimes, we in medicine just keep doing stuff to people,” Komatsu said. “We have all of these machines, all of these bells and whistles, and we use them without asking, ‘Is this helpful? Is this worth it to you?’”
Komatsu works with people in the most desperate of circumstances: those who have essentially run out of curative medical treatment options. In many cases, the suffering is amplified by the youth and innocence of the patient.
Much of this work is made possible through philanthropy. TrinityKids Care, along with Torrance Memorial Pediatrics and Vistas for Children, will be among the beneficiaries of the 30th Annual Honda Evening Under the Stars for Children’s Healthcare Event on August 27. Held at American Honda’s Torrance campus, the event will feature saxophonist Kenny G, gourmet food and wine, and raise money for the children’s healthcare causes.
Komatsu said people often assume the work the event supports is something of a downer. By his own admission, mentioning his work tends to create long bouts of silence when it comes up in conversation.
But the conditions of his work seem to have the opposite effect. Komatsu believes in mindfulness, and is devotedly “present” at his job. He is attuned to the relationship networks of patients, understands the social and political forces shaping his work, and is reflective about the lessons that emerge from traumatizing experiences.
“The best kept secret in hospice is that we get more out of the work than we give,” Komatsu said. “To see the strength of the children, to see the resilience of their parents…We hope that we can be as brave as them when we have to face the end of our lives. It gives us inspiration to do our best work.”
Switch in time
Komatsu’s temperament stems in part from seeing things with beginner’s eyes — after nearly 20 years in a high-level position, he decided to suddenly make a change.
He was medical director at the neonatal intensive care unit at Torrance’s Providence Little Company of Mary Medical Center from 1985 to 2004, when he had what he describes as a “midlife crisis.” He felt the work had become detached from the actual needs of patients The job he had been so dedicated to no longer was as gratifying.
“It did not always seem that my colleagues were always very concerned about the pain and suffering of babies,” Komatsu said. “We would put them through all of these procedures, only to have them die from complications or chronic illness months later.”
His concern for how patients were actually feeling, and a willingness to respect their wishes, led Komatsu into palliative care. He went to Boston to pursue a fellowship, studying at the Dana Farber Cancer Institute, Brigham and Woman’s Hospital, and Harvard Medical School.
Despite the credentials he accumulated, staking out new territory so far into his career was not easy.
“It’s certainly not common to [switch fields], especially when you’re 50 years old,” Komatsu said. “Even my dad asked me, ‘Are you sure about this?’”
He knew that it was the right decision.
“Children have really always been at the center of my practice,” Komatsu said. “It’s a population of people who are very vulnerable, and are underserved in the total scheme of our healthcare system.”
But returning to Southern California, Komatsu faced a whole new set of challenges. The swirl of emotions that goes with hospice care can make people simultaneously obstinate and desperate, a tendency that he said has been intensified by the availability of information on the Internet. Sites like webmd.com have made everyone a doctor. And from snake venom to seaweed, Komatsu has heard about a lot of miracle cures. In such situations, Komatsu has learned to work with patients and families “within their belief systems.”
“In the beginning, when I heard that I wanted to say, ‘What medical school did you go to?’” Komatsu said. “I had to swallow my pride and realize, it’s not about my pride or my ego. It’s about taking care of patients. If I strongarm them, I’m going to lose their trust, and the relationship is going to go down the tubes.”
As the only dedicated pediatric hospice program in the region, TrinityKids Care is inundated with requests for help. And the pace is unlikely to slow.
A little-known clause in the Affordable Care Act, commonly known as Obamacare, allows children on Medicaid to receive curative care and hospice simultaneously. Known as “concurrent care,” the practice enables children, for example, to be in their homes for hospice while periodically heading to the hospital to receive chemotherapy or radiation treatment.
The change in law has greatly increased the number of children in the TrinityCares program, Komatsu said. When he returned from Boston in 2005, the team was caring for between six and 12 children. Today, there are 70 youths in hospice, and another 40 in a “waiver program” for those receiving palliative care, but who have not yet entered their last six months of life.
TrinityCares is now the largest pediatric hospice program in the country. Komatsu said he often receives calls from San Bernardino and Ventura counties, but must explain that they are only licensed for Los Angeles and Orange counties. Still, Komatsu regularly drives more than 50 miles each way to visit patients at the far reaches of the service area.
“Through his compassion for his patients and colleagues, and his passion for his work, we are growing this very special program to care for more and more children,” said Terri Warren executive director of Providence TrinityCare. “This would not be possible without Glen’s incredible talents, his willingness to give of himself to the children, their families, and his team.”
TrinityKids Care has no official age limit. There are newborns and infants, but occasionally, the program will have patients in their late 20s or early 30s, so long as the patient has a pediatric diagnosis and is still seeing a pediatric team. This frequently happens with developmental disorders like cerebral palsy, where the patient is technically an adult but relies on parents or guardians to make decisions.
The middle of this spectrum presents some of the biggest challenges. Occasionally, parents will be desperate to fight a disease in the hospital, while a child wants to return home. It’s here that Komatsu’s gets to practice, as well as preach, his philosophy about paying attention.
“I really try to get parents to listen to their children. Even at 8, 9, 10 they are very wise. They have grown up really quickly in these situations and say some amazingly profound things,” Komatsu said. “I try to get parents to listen to that voice. Even though legally, they can’t be adults ‘till 18, these kids have a really strong sense of what they want.”
Looking to the future
Incurable diseases strike with unfortunate randomness. Though hospice is generally far more affordable than ending life inside a hospital, it can still be a significant expense. And while some of the families are capable of paying, many cannot. (It is for patients like these, Komatsu said, that make the Evening Under the Stars event especially important.)
“We serve the poorest of the poor. We’ve been to homes where six people are living in a converted garage with a dirt floor,” Komatsu said. “We take undocumented children if they need help. No matter what language they speak, most kids want to be at home with their families.”
In addition to poverty, Komatsu’s work exposes him to all manner of social ills. These are, of course, exacerbated by looming end of life.
“There is a lot of emotion, a lot of drama in families when the child is seriously ill or dying,” Komatsu said. “We’ve seen parents get divorced, domestic violence, drug abuse, all kinds of stress going on.”
As a result, TrinityKids Care is group effort. In addition to doctors, the program includes nurses, social workers, chaplains, home health aides and volunteers. A significant aspect of the program consists of what Komatsu calls “non-medical” services.
Staff chaplains pray with patients, or get outside clergy involved if it is important to the child or the family. Patients and families also benefit from art therapy. The projects provide the activities for the patients, while also creating tangible memories for after the child has passed away. Sometimes volunteers will bring paints and paper to capture the handprints of each member of the family. The program will also take a piece of the child’s clothing, and use it to make a teddy bear.
“What makes TrinityKids Care unique is concept of the whole-person care model thatKomatsu promotes with his staff,” said Margaret Sullivan, a social worker and clinical supervisor with the program. “This is a one of a kind leadership that none of us have experienced anywhere else.”
This approach to tragedy sometimes promotes the same kind of reflectiveness among survivors that Komatsu brings to his work. While getting beyond the grief is difficult and sometimes impossible, it occasionally endows parents with a renewed appreciation for life.
“It’s obviously awful when a child dies so young, but to remember the legacy that a child leaves is powerful,” Komatsu said. “I just talked to a family that lost a child at three weeks. Now, they don’t take anything for granted. They hug their sons all the time. It’s just a different way of life after you’ve lost a child.”