Partners in Care:
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him to become weaker with time, so he stopped it. Discussing a roadmap that incorporated their goals of care had to be done repeatedly to ensure full understanding of the nature of the illness. One had to address new concerns or ideas on the origin of the illness; these cropped up over time, possibly due to parental guilt. Once the family had time to better understand the disease progression, then adherence, follow-up and acceptance of treatment options were much improved.
- A 12-year-old immigrant boy with the history of nonverbal, spastic quadriplegic cerebral palsy is admitted to the hospital for pneumonia and despite his passing a swallow study, his team placed a gastrostomy tube, feeling that it was safer for him than eating. He proceeded to have significant weight loss, for unclear reasons, despite multiple medications and specialist recommendation attempts. His mother brought him to all follow-up visits but lost her job, having missed so much work. Upon further discussion, his mother reported she did not have any formal schooling. She could not read, write or understand numbers. She had been mis-measuring his feeds and giving mostly water. She had developed significant financial strain, food insecurity and was missing the joy she’ d had in feeding her son homecooked foods he enjoyed by mouth. She regretted his surgery; she had not understood how difficult life would be for them both with the G-tube. Oral feeds were reattempted as safely as possible with a blender, but he was not as interested as he used to be. Simple color-coded measuring devices with clear lines were provided to assist with measurements for feeds and medications. Resources were provided to the mother to help with financial problems and food insecurity, with some improvement.
- An 8-year-old girl who’ d emigrated two years prior had developed sudden altered mental status. The week before she’ d been just like her normal twin, until she began rocking, hand flapping and mumbling to herself. She stopped feeding herself and lost the ability to toilet or complete hygiene independently. The family felt it was too difficult to manage getting her into the hospital to pursue a workup, and her mother was very afraid of losing her job due to missing work to care for her child( these fears were not elicited at the first few visits). She was referred and even sent by taxi to the hospital, but it took nine months and EMS for her be admitted and evaluated, all negative by that time. When genetic testing was recommended so that etiology and additional risks could be sought, her mother said,“ Why would I want to know what has not happened yet and cause myself to worry?” The concern for the well-being of the family, the ability of Mom to continue working and the patient’ s ability to manage her hygiene were identified as top priorities. Spacing out follow-up appointments in a way that met Mom’ s needs was done, while other family members such as the adult older sister were brought in to understand the family’ s values better. In the family’ s culture, children with issues such as this were often hidden, or even killed due to fear of witchcraft. Medication management focused on their specified priorities, while further workup and testing were postponed until labs were needed for another reason and could be drawn together.
Making medical decisions, big and small, in a truly patient-centered, non-paternalistic way takes dedicated curiosity, effort and cultural humility. A patient’ s strengths, barriers and values should be considered carefully, then aligned as much as possible with algorithms. Many immigrants view asking questions as potentially disrespecting the authority of their doctor, so avoid asking. Therefore, gently eliciting a patient’ s personal situation, beliefs and values is necessary prior to making recommendations. The risk of a procedure will be understood differently by patients of varying backgrounds and values. These factors should be explored. The unique combination of patient factors might best be discussed in a multidisciplinary team setting to assist with prioritization, consistent messaging and avoiding confusion for the patient. Our perceived benefits of treatment, including frequent follow-up, may not be of significant value to the patient, and can even be harmful without careful consideration and eliciting feedback from the patient and family. Conversely, the potential benefit of relatively simple interventions such as giving appropriate anticipatory guidance or orienting a patient to the U. S. health care system may be compounded across an entire family, improving health for generations to come.
This ripple effect of these decisions is exactly why we must take the time to patiently explore cultural differences, values and strengths, before determining the unique risk versus benefit ratio for every decision with every patient.
Reference:
1
Galanti, G. A.( 2014). Caring for patients from different cultures( 5th ed.). University of Pennsylvania Press.
Dr. Bichir practices general pediatrics with Community Health Systems Network-Cold Spring affiliated with Cincinnati Children’ s Hospital Medical Center, and is a former Director of Refugee Health and assistant professor of pediatrics with the University of Louisville School of Medicine.
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