The Secondary Effect of Disparity During PandemicMelissa C Palmer, LCSW, ACHP-SW, APHSW-C, JD Jun 16, 2020
We are all experiencing changes as a result of the COVID-19 pandemic. Whether we have had to work from home or have been furloughed from our positions, the psychological and socioeconomic impact will have far-reaching effects in our lives for the foreseeable future. However, not all people are experiencing the detrimental effects equally; groups that are marginalized in society are experiencing ramifications that far exceed the majority group.
As a palliative care social worker and case manager in health care, I have a front row seat to the secondary effects of the pandemic. One patient called me worried about their spouse who is on a vent in the ICU, and the patient cannot work because he has to care for the family’s small children. Another widowed patient, who is in her 80’s, is terrified to leave her home because she has emphysema and believes she will die if she contracts COVID-19; but she has no one to help her with groceries, transportation, or filling her medications. A young Black patient miraculously recovered after weeks in the ICU in a coma on a vent, but is so deconditioned that he cannot return to work; his wife is disabled and has not been in a work environment for years. A Latinx patient and his spouse were both laid off from their jobs in the hospitality industry, and subsequently lost their insurance, but now they have prohibitive medical bills from their treatment for the virus.
People of color and have been disproportionately affected by COVID-19, including diagnosis and secondary effects like homelessness, joblessness, loss of insurance, and long-term life changes as a result of illness and community wide restrictions. An overrepresentation of COVID-19 related hospitalizations and deaths in the African American and Hispanic communities has been reported nation-wide (www.cdc.gov). <.p>
“The conditions in which people live, learn, work, and play contribute to their health. These conditions, over time, lead to different levels of health risks, needs, and outcomes among some people in certain racial and ethnic minority groups.” www.cdc.gov
Those who may be working 2 or 3 jobs in order to survive tend to be underinsured and at higher risk for inadequate access care. When people working in entry level paying positions in the hospitality industry or restaurant business lose all employment, for example, they do not have golden parachutes to soften their falls. This translates to people needing to choose between insurance and rent, or food and utilities, or medical treatment versus waiting it out.
Many seniors have been told by providers during the pandemic that there may not be a ventilator for them if a choice had to be made between them and a younger patient. Perceived or real scarcity of resources can keep seniors from coming to ask for the care they need, and many seniors have expressed to me that they feel it would be futile for them to be hospitalized and have opted for hospice.
The choices that patients make about goals of care and end of life are directly and indirectly linked to their circumstances. If someone is feeling hopeless (“no one will help me or put me on a vent because I am old”), or powerless (“the doctors and nurses don’t think I am worth saving”), or financially disadvantaged (“I can’t go to the hospital because it will cost too much”), they are much more likely to make decisions that are not in alignment with their core beliefs. Although the pandemic has illuminated the issues, healthcare and societal disparities have been consistently and systemically recognized throughout our country for many decades.
In our palliative care practice, integrative care translates to awareness of disparity that is exacerbated by national and global crises like the pandemic. We also have a duty to help our patients and families find creative ways to meet their basic needs in order to provide the highest level of physical, psychosocial, and spiritual care. As palliative care community specialists, listening to each person’s story is as essential as ever to the patients and communities we serve. In order to provide equitable and compassionate care, it is our responsibility to build trust and be consistently trustworthy of people’s lives and stories. We can acknowledge the disparities when they are expressed by our patients and provide creative solutions to narrow the gap one patient at a time.