In this year’s State of the Union address, President Obama brought some much-needed attention to the topic of family leave. In the months since, he and some of his allies in Congress have been championing the “Healthy Families Act,” which establishes guidelines providing that all employees receive up to seven days of paid leave. This paid time away can fall under the category of “sick leave,” but the leave could alternatively be spent caring for a chronically ill loved one.
In 2006-2007, I had the privilege of following the health care story of Thor Lem and his family. I was in the midst of producing my documentary film “American Heart,” which looks at health care through the eyes of three refugees living in the U.S., each of them combating both chronic and emergent health problems.
Thus, what became the final year of Lem’s life unfolded, in part, in front of our cameras. During that time, it became clear that Lem’s family was in some ways a very typical American family, striving to make ends meet and meanwhile managing the day-to-day struggles of seeking health care for aging members of the family.
End-of-Life Care
When we first meet Thor Lem in the film, he has recently been diagnosed with liver cancer, and his long-term prognosis is not good. Lem approaches this news with understandable apprehension. During one particularly heart-breaking exchange, we hear Lem ask his primary care physician, Dr. Patricia Walker, to give him “more hope.”
With the help of an interpreter, Dr. Walker gently reminds Lem that his treatment is palliative in nature, meaning they will treat his cancer to manage pain and symptoms, and to extend his life, but there is little chance his cancer can be cured.
We learn that Lem is a refugee hailing from Cambodia, where he endured the Killing Fields and the tumultuous rule of Pol Pot. He’s been in the United States for many years, and has built a life and raised a family in St. Paul, Minnesota. He is 74 years old.
Lem and his family receive their primary care at HealthPartners Center for International Health, a clinic in St. Paul that attracts a diverse patient population composed almost entirely of immigrants and refugees from the surrounding neighborhoods. The clinic prides itself on serving these patients with compassion and flexibility, making accommodations for the cultural differences, language barriers, and economic struggles that arise when your waiting room is a global village.
It was this global village and its inhabitants that first captured my imagination. Dr. Walker and her colleagues had pointed out that every patient that walked through their doors had a fascinating story to tell. At first, I wasn’t sure if I would be bearing witness to the failings of the health care system or, conversely, creating a virtual guidebook to battling health care inequities. In the end, thanks to the compassion and dedication on display at the clinic, it was closer to the latter.
Family Caregiving
Still, not every story can reach a happy ending. When situations like Lem’s crop up, providers at even the best-equipped and best-intentioned health care facilities can start to feel powerless. Dr. Walker points out that Lem is missing appointments — it’s a transportation issue, but it’s also something more.
With his health failing, Lem relies heavily on his adult son Thei War. Thei has a family of his own, and not only does Thei look out for his dad and provide for his own young children, but he also cares for his mother, who is likewise chronically ill.
In addition to caring for his multi-generational family, Thei works hard—really hard—to hold down his manufacturing job. He works the night shift, arriving home every morning just in time to drive his kids to school.
Lem feels that he needs his son Thei with him at the appointments. It’s not surprising. Many senior citizens count on their younger family members to help them navigate the health care system, and in my years observing and documenting various immigrant communities seeking care, this phenomenon seems even more prevalent in immigrant families.
It’s not uncommon for a large, extended family of refugees or immigrants to rely on one member of their family to serve as their health care “navigator.” This young adult is often more comfortable with the English language, more acclimated to American culture, and more confident when it comes to negotiating the systems that permeate modern American life.
But Thei can’t do it all, and some commitments inevitably fall through the cracks. Dr. Walker laments one particular occasion when Lem was a no-show for a scheduled scan of his heart, and as a result he was unable to receive his next chemotherapy treatment. Lem’s health deteriorated from there.
Thei is clearly engaged in his father’s health care, and he displays heartfelt concern about his father’s wellbeing, so it’s not for a lack of caring. When asked, Thei seems exasperated by his own hectic schedule, pointing out that he is often faced with a difficult choice: get your children to school or get your parents to their many medical appointments.
Dr. Walker shows great sympathy, and she is in awe of Thei and all he accomplishes on two or three hours of sleep. Ultimately, in Dr. Walker’s words, Lem “is not getting best care” because of the pressures put on Thei by his complicated work-life balance. After some ups and downs, Lem died in the hospital on December 27, 2007.
Next Steps For Family Leave
So what if, during these crucial final months of Thor Lem’s life, Thei had been given access to a guaranteed seven days of paid leave? Currently, there is no such requirement on the books at the federal level. The Family and Medical Leave Act does protect certain employees from losing their job when a family illness requires them to take unpaid time off. But for families like Thei’s, giving up one week of income can be a big blow.
The second generation “navigator” can only do so much to ensure their family is well cared for. In this and other ways, Thei’s dilemma is emblematic of the struggles many refugee families face. But I suspect many Americans will relate to the central problem that vexed Thei. When every paycheck matters, when pressures of all kinds can have profound effects on a family’s health, feeling like you can count on your livelihood, and that your employer is on your side, can make a big difference.
When President Obama shined a light on this issue in January, it had the hallmarks of a Democratic initiative that would face an uphill battle getting through the Republican-controlled House and Senate. But, in March, a filibuster-proof majority in the Senate voted for a non-binding budget amendment that hints at bipartisan support for something akin to the Healthy Families Act.
So there are signs of potential progress on this front during Obama’s final twenty months in office. But it will require a strong push from engaged communities to see that legislation moves forward.
SOURCE: Health Affairs Blog – Read entire story here.
