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Culture And End-Of-Life Caretaking

Discussion in 'Hospital' started by The Good Doctor, Jul 10, 2021.

  1. The Good Doctor

    The Good Doctor Golden Member

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    Amidst beeping monitors, I sat holding my mother’s frail hand in mine with tears rolling down my face and an eerie silence within my soul. I was trying to make sense of the last 24 hours.

    My mother had migrated to Houston after an early retirement at 55 to spend time with her granddaughter and me. But life had other plans, as she was diagnosed with breast cancer a year into her stay. She had bravely fought through and finished her treatment.

    However, our celebration of winning over cancer was short-lived. One month later, she developed a headache that turned out to be metastatic disease. And 24 hours after that, she lay on a hospital bed, non-communicative and happily confused. I had to decide whether to let her go or keep her alive.

    Transitioning from the physician to caretaker role and making an end-of-life decision was difficult and complex, leaving me emotionally exhausted.

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    Our cultural and religious norms deviated from the Western standard. My training as a physician in North America added a different facet that made the job of having to decide for my mother even more daunting.

    A common practice in Asian Indian culture is that older parents are cared for by their children and usually let children make decisions regarding their health.

    Cancer is perceived as a death sentence in this culture, and it is common that minimal bad news regarding life-threatening illness is given to a parent.

    Despite my mother being a highly educated woman, she had entrusted me with most of her health care decision-making.

    After my mother’s diagnosis of breast cancer, I waded carefully into the zone of end-of-life decision-making. She was always firm in conveying that she did not want to be on life-altering treatment if the long-term prognosis was bleak.

    Death in Indian culture is not viewed as a finality, but a transition of the soul from one life to another. My mother seemed to be at peace with having lived a beautiful life at her age and did not want that scarred with pain and suffering. I knew this, but the physician in me started researching statistics on treatment, survival rates and investigative therapies.

    I considered these treatments and started to collaborate with her medical team until my mother’s incoherent speech brought me back to the present and reminded me of her wishes. Her oxygen saturation was dropping, and I knew I had to decide.

    After a lot of deliberation, I let her oncologist know that I wanted palliative care and understanding the prognosis. My mother would have wanted comfort care. It was evident that her doctors were hesitant about this decision and perhaps thought I was giving up too prematurely.

    Several of them reached out to me to ask if I would reconsider the decision. This furthered my confusion, but my mother’s voice to let her go with dignity and grace guided my decision to choose comfort care. My mother was transferred to hospice and passed away at home peacefully with her granddaughter and me at her bedside.

    This loss was shattering but made me understand how physically and emotionally taxing the role of a caretaker can be. Standing on the other side of the bed in the role of a physician was strikingly different from being the decision-maker for a loved one. This experience made me ponder on the role of cultural competency training for the process of end-of-life care. North America is a multi-ethnic society, and as health care providers, it is imperative to be sensitive to differences related to culture and spiritual values while making tough medical decisions.

    The right to patient autonomy, open communication, and decision-making regarding their health is the foundation set forth by the Patient Self-Determination Act for all Americans.

    In some instances, this may conflict with certain core cultural values, which leads to health disparities and fractured care. The first step to being a culturally competent physician is to be open to the patient’s feelings and thought process and understand their family background when decisions regarding end-of-life conflict with Western values.

    Cultural influences have a huge role in the dying process. Trying to understand the place from where caretakers make decisions may help physicians balance their own feelings with the perception of death by an ethnic group.

    Cultural collaboration and collective decision-making can incorporate the spiritual belief system of the patient into the dying process, ensuring a more graceful and dignified closure. As a physician, I am learning that it is as important to do no harm as it is to help prolong life. Our emphasis should be on quality rather than quantity when addressing end-of-life care decisions for our patients.

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