We Need a Care System That Treats Patients With Dignity

Earlier this year, I lost my dad to complications from diabetes. He was first admitted to the hospital two days before Thanksgiving of last year. Over the course of the next nine months, he suffered through 15 surgeries and 14 hospital stays. 

In between those stays, he was shuffled between skilled nursing facilities, assisted living facilities, and board and care homes. While watching my dad’s decline in health, I learned the differences of what those terms  meant in real-time as my family and I tried to navigate a complicated, and oftentimes unforgiving, health care system. All in all, he went to four separate hospitals and six outpatient facilities to receive his so-called “care.” 

November is Family Caregiving Month. For some, caregiving means taking care of sick or aging family or community members. For others, it means having a support network or a good friend to give you a couch to crash on during tough times. For me, it has meant advocating for my father’s right to adequate, culturally-sensitive care in his final year of life. 

As an immigration attorney and policy advocate by trade, I have always fought for those who are indigent and under-resourced, and yet, I failed when it came to advocating for the holistic care of my dad. Caregiving for my dad required all of me. Time and again, I found myself overwhelmed by the sheer number of situations where my sister, my mom, or I had to push for quality care to be provided to my dad. 

We pushed for the dressings of my dad’s wound to be adequately replaced on a timely basis. Pushed for my dad to be fed a warm meal after his surgery because he was neglected and missed his mealtime window. Pushed for his transfer to a private room so that he could have some peace and quiet from a roommate that had the TV on 24/7. Pushed for a time to meet with his several doctors, so that we could receive a full explanation and understand  how his care was being handled. We had to push for so many things that should be the standard of care; after some time I lost sight of where the doctors’ responsibilities ended and where ours began.

Through this experience, I found that our healthcare system is not designed to cater to the needs of all patients, especially those who need culturally-specific care. We were met with little empathy or understanding of the fact that, despite living in the U.S. for over 40 years, my dad still had many language and cultural barriers as an immigrant. 

We found out the hard way that only four  facilities had Korean speakers who could help with his translation and interpretation needs. Only two facilities provided Korean food, which was a majority of his diet prior to being admitted. That was his comfort food, and he did not have regular access to it. I had to go to his favorite restaurant or bring home cooked meals several times a week so he could eat comfortably, while juggling my work and other responsibilities. 

On top of worrying about his health and well-being, I often thought about how isolated and lonely he must have felt, not only being unable to go home, but also being ripped away from his culture, his routine, his food, family, and his language. Even board and care homes, where we paid out of pocket for his care and a privilege that not all families have, could not completely meet all of my dad’s needs. 

We all know that the health care system in America is fundamentally broken — driven by profit and cruelty, and not patient-care, access, or even empathy. Despite knowing this to be true, I was still jarred from experiencing the depth of our healthcare system’s issues. 

Stories like mine, and so many others, is what drives me in my work at the National Asian Pacific American Women’s Forum (NAPAWF). Earlier this year, NAPAWF issued a policy report emphasizing the need for culturally informed solutions, targeted funding, and multi-sector collaborations. 

We desperately need investment to support a true caregiving economy, both in infrastructure and language access for care workers — both vital to removing barriers to quality health care for Asian American, Native Hawaiian, and Pacific Islander (AANHPI) communities. 

Stories like my family’s should not be the norm, but sadly, when you speak to AANHPIs, you will find yourself inundated with stories of inadequate care and family members who have to bear the burden of guilt of a system that failed their loved ones. 

I have struggled with how public I should go with this info  given that my dad was a private person and we are deeply grieving his loss. I am also deeply angry about the lack of quality care he received in his final days. 

But then I found this quote by Jamie Anderson when I needed it most: “Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.” 

And so, I’m doing this for my dad: I show him my love not just through my grief, but through my continued advocacy around this topic so stories like mine are no longer commonplace. We need a system that works for all of us — the stakes are too high for anything else.