Circa 2005
Gazing out the window of her Southern California home, Valerie Sobel sees the brilliant colors and shapes of the San Jacinto Mountains. The Swiss Alp-like vista does not, however, erase the memories of a much different view—narrow gray walls lining a hospital corridor. Sobel was told of her 18-year-old son André’s inoperable brain tumor while standing in a barren basement hallway of the University of California–San Francisco Medical Center. She remembers passing out, with no desire to return to an unbearable reality. Earlier that day, her husband had been admitted as a patient in the intensive care unit, the stress of his son’s condition having exacerbated an ongoing illness. Sobel recalls, “I was there alone with my child in this gray basement for the most life-changing consultation of our lives. One of the doctors attending was already scrubbed for his next surgery, and the other doctor added to this Kafkaesque, surreal scene by having just come out of surgery blood-stained. In that instant it crossed my mind that this should never happen to other parents.”
André died a year later, and her husband passed away shortly thereafter. Sobel became determined to honor her son’s memory by helping other children. Still, it took time for her to find how to best make an impact. “At first I wanted to help gifted young people who were like André but did not have the advantages of his home life. I was allowed by an organization called the Covenant House to tour with their mobile unit at night. I learned about runaways and met homeless children living under bridges; I became a courtappointed special advocate and visited juvenile detention centers and holding facilities. It was only after a couple of years that I realized I have no training or understanding of atrisk youth. The only thing I truly know is what the mother of a terminally ill child feels and needs.” In 2000, with the memory of months spent caring for a dying son, Sobel created the André Sobel River of Life Foundation (ASRLF) to help soften the crisis faced by parents of children with life-threatening illnesses.
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Now, Sobel, a former interior designer whose work has been published in Architectural Digest, is launching the foundation’s newest project: helping hospitals create soothing rooms in which medical specialists can discuss patients’ care with families. She intends to develop environments that send a subliminal message of hope and safety, in contrast to the confusion produced by a bustling, fluorescent-lit hallway.
Reflecting on her memories of receiving news about André, Sobel says, “I see that awful corridor. I see the exact color of gray, the blue neon lights, the coldness, the narrowness. Would it have been sweeter in another place? Not sweeter, but more respectful and less threatening. There was something so hideously institutional about the experience. This room we build has to create the color of hope, the sound of hope, the texture of hope in every way that reaches the senses. Because nobody knows with a terminal diagnosis who will survive.”
Sobel has organized a unique group of architecture professors from Texas A&M University, many of whom started their careers as psychiatrists and now craft their designs using principles from behavioral science, color theory and research about the ways space affects the comfort and dynamics of groups. A collaborating scientist has spent her life creating healing spaces and investigating the subliminal effects of environment on the outcomes of illness and trauma. Sobel’s work will bridge multiple modalities, creating a cutting-edge, comprehensive strategy that has not previously been pulled together.
The general principle motivating Sobel’s design efforts is not new. In 1992, Robert Buckman’s famous text How to Break Bad News: A Guide for Health Care Professionals explained that what patients and families hear and understand, how they react to and integrate the information they receive, and what consequences occur for their emotional well-being depend very much on the environment that is set for them and how the doctor conveys the news.
Unfortunately, crucial steps for preserving families’ sense of emotional safety are frequently overlooked, due to lack of space, busy schedules and poor emphasis on the importance of the emotional as well as the technical aspects of medical care.
It is a well-known truism that structure informs function, or as the movie Field of Dreams puts it, if you build it, they will come. One of the most effective ways to induce change in a system is to create physical surroundings conducive to the behavior one wishes to encourage. Despite education for physicians and other health care workers about steps necessary to give lifealtering information in a less traumatic way, these practices will not be adopted in widespread fashion until a physical space set aside for them underscores their importance as an expected part of medical care.
Beyond these efforts to facilitate a more supportive physical environment in hospitals, the André Sobel River of Life Foundation helps families of children with life-threatening illnesses in other crucial ways throughout the course of treatment. Sobel’s financial resources allowed her to spend extra time with her son during his final year of life. How many mothers, she wondered, lack that opportunity? She realized the typical single mother faces a desperate choice: leave her job, fail to support her family and lose her health insurance; or continue working and miss irreplaceable time with her dying child. Says Sobel, “One woman we helped told us that the amount of money she would need to be able to stay home with her child was $800 a month. Imagine the absurdity that forces a mother to leave her critically ill child and go to work, just so she can pay a stranger to do the things she wants to do most.”
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The André Sobel River of Life Foundation offers financial support to single mothers so they can remain by their children’s side throughout life-threatening illness. Explains Sobel, “By caring for the mother, we care for the child.” The foundation works with several pediatric medical facilities throughout the country. Social workers at these centers assess and recommend families to the foundation when financial assistance from other resources has been exhausted. By working through social worker recommendations, the foundation eliminates the barrier of the lengthy application process required by most foundations. Sobel says, “One foundation requires families to fill out a 17-page application and then wait for it to be evaluated. Basically, ours is a two-page document filled out by the social worker; we never ask the parent, who at that point should not have to deal with filling out another piece of paper. The social worker checks boxes indicating what resources have already been exhausted—this is their due diligence.” The foundation sometimes helps a desperate family within hours. To monitor the process, Sobel meets periodically with the social workers involved at participating hospitals. “The only abuse we could experience is if other resources are not thoroughly checked first. But our social workers know they have a very small golden goose they could easily kill if misused. So the system works beautifully.
“Our goal is mental health for the caregivers, letting them deal with the crisis without worrying about going to work the next day. When a child has something growing in his head or in his spine that is creating 10 billion new aberrant cells every minute, his mother will not go to work because there is no time to waste. She will take her child to the best place she can get treatment as quickly as she knows how, the best her circumstances can afford.”
The ASRLF recognizes that pediatric illness affects an entire family, and the foundation supports a variety of family needs. Almost 50 percent of its disbursements go to emergency housing, utilities and groceries for families facing inadequate food supplies or eviction. The foundation also funds caregiver respite, transportation for families with no resources to get to treatments or visit their sick children, activities such as ballet lessons for a patient’s sibling, and often burial costs. “We try to support what the government can never be expected to support,” explains Sobel, who continues to be astounded by the desperate situations of so many families and their inability to meet basic living needs through other programs.
“We typically come in on the day of the diagnosis when a social worker says, ‘Here is an indigent family—we don’t know how we are going to treat them yet, but we know they have nowhere to stay tonight.’ A family may have immediate needs but a long wait before other funding sources kick in, or they may simply have run out of resources. We have assisted many mothers who had $80,000 to $100,000 salaries before their children became ill, but after six months needed food stamps. These parents are proud and often feel that by asking for assistance they may somehow make matters worse for their children. But by the time we get them, they have no other choice. We not only issue a check, but we investigate how the family got to that point and how they will pay the rent the following month. We go to the landlord proposing, ‘We will pay four months of rent in advance—will you give us six?’”
Sobel has also witnessed the tremendous strain on marriages when a child receives a terminal diagnosis. She cites preliminary research suggesting more than three-fourths of couples separate or divorce within the first year of their child’s diagnosis. “If there is the smallest fissure in a marriage, it cracks,” she explains. She looks forward to the attention this issue will receive with a new study by the National Institutes of Health. The study is investigating the number of children in the U.S. who receive terminal diagnoses each year, the number of caregivers who become ill themselves as a result, the percentage of families that dissolve, the effect on siblings, the fallout to the federal government and other far-reaching effects of terminal illness. Sobel hopes the information the study brings will have a positive impact in shaping future health policies.
Armed with such information, Sobel hopes to effect legislative changes that would make a tremendous difference for families facing a child’s terminal illness. “Similar programs are already in place for other caregivers. For example, caregivers of the elderly can receive a $5,000 tax rebate from the federal government. The majority of our foundation’s donations to families fall in the $100 to $3,000 range, so $5,000 would make a big difference in these families’ lives.”
While the ASRLF began its partnerships with California hospitals, this year the foundation has expanded its outreach nationally. The ASRLF’s family assistance program is now housed at some of the most prestigious children’s research and treatment centers across the country, including Memorial Sloan-Kettering Cancer Center in New York, The Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Texas Children’s Hospital in Houston, Children’s Hospital Medical Center of Akron in Ohio, and Children’s Hospital Boston, the pediatric teaching hospital of Harvard Medical School.
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For the success of her efforts, Sobel was recently nominated for a Minerva Award, created by California’s First Lady Maria Shriver to honor women who have made significant contributions to their professions and created positive change with lasting impact.
As gratifying as the progress has been, Sobel knows her family’s endowment of the ASRLF is not sufficient on its own. For the foundation’s work to continue, it must increase its ability to garner donations, matching grants and corporate sponsorships. “We have a great program, but the program is tied to the funds. We are giving away $500,000 to $600,000 annually in direct assistance, usually within 24 hours of the request, to people who would have no help otherwise. If we exhaust our funds, we will have nothing to give. I have great hope that the state and federal government will help once the awareness is created, but at the end of the day, the role of the private sector is most significant, and no one person has deep enough pockets.”
The contributions of many—individuals, corporations, organizations—are necessary to enable the ASRLF to continue helping families through the journey of each terminally ill child. Sobel wants parents to spend every minute they can with children who sometimes don’t have many minutes left to spend. And, as evidenced by the foundation’s newest project, she wants the beginning of the process to be as positive a start as possible. She cannot change the diagnosis for terminally ill children, but she can help kids and their families gets a taste of the quiet peace she sees in the mountains behind her home. In that view, there is hope.
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If you are interested in donating to the André Sobel River of Life Foundation, please ask your employer to match your donation
