Blog: Family Connections with Pediatrics
In this month’s Pediatrics, Shapiro et al publish an Ethics Rounds article titled, “Disposition Decisions in Cases of Medical Complexity and Health Inequity” (10.1542/peds.2021-055558), which explores some of the challenges when discharging patients with complex medical and social issues from the hospital during the COVID-19 pandemic.
What are “Ethics Rounds?”
Ethics Rounds are specific articles in Pediatrics, usually published every other month, which discuss an ethical issue in patient care, research, or administration. The authors begin by sharing a case. Next, the authors invite health care providers to comment on the case from their different places of work, areas of practice, or views. The article concludes by sharing the outcome and summarizing the discussion.
Who is this case about?
Teresa is a 32-year-old woman who lives with her mother, Sarah, who is also her legal guardian, in a 9th floor apartment in Washington, DC. Teresa has intellectual and physical disabilities as well as other complex medical issues that require 8 hours of home nursing a day.
What is the ethics issue?
In the summer of 2020, Teresa had some strokes that caused a decline in her health. Teresa is no longer verbal, only responds to pain, and requires full support for all aspects of daily living. In planning for discharge, a social worker learned that Teresa and her mother do not always have electricity service, the elevator in their building does not always work, and they do not have space for a nurse to sleep at their home (home health agencies require this). The care team suggests that Teresa move to a skilled nursing facility.
Sarah is fearful and does not agree. Because of COVID-19 restrictions, she may not be able to visit Teresa if she is in a skilled nursing facility. Previously, Sarah has had negative experiences with family members being neglected in nursing homes. Sarah feels that she and her daughter would have better options if they were not poor and Black. She knows the risks in taking Teresa home and is willing to accept them.
The team caring for Teresa requested an ethics consult to discuss if Teresa can be discharged to home. The article invites “ethics consults” by four different doctors from different hospitals. Should Sarah be able to take Teresa home, and are their racial and geographical concerns playing a role in this decision?
What types of discussions are in the ethics consults?
Each doctor touches on certain aspects of the medical care, Teresa’s health and well-being, and life at home with her mother. Here are just a few of the topics put forth by the doctors:
- Making plans and decisions, and what matters most to Sarah and Teresa
- Honest discussions about Teresa’s health
- The dehumanizing effects of racism
- Placement in a facility and effects of COVID-19 restrictions in such places
- Weighing best interests and acceptable risks, and outlining options
What can you do with this article?
- Please read this article to learn about how things went for Teresa and Sarah. Many of you will relate to certain aspects of the discussions about making decisions, effects of racism, best interests, options, and prognosis.
- Most hospitals have ethics committees that help discuss ethical issues in cases just like Teresa’s, and many of these committees include family advisors. If you are interested in becoming involved, contact the Patient Experience department of your local hospital.
- If you are part of a hospital family advisory council, consider sharing this article and hosting a discussion about it. Are there aspects of the discussions in the article that align with existing work or take the council in new directions? For example, how could a family advisory council work with hospital leadership to address housing or utility issues for patients and families?