By Marian Grant
Those living with serious illness — a life-threatening or life-limiting illness, such as metastatic cancer, dementia, or heart failure — are at higher risk for complications from COVID-19.
Their increased vulnerability has posed additional challenges for the health workers who care for them.
By Elizabeth Clayborne
I was a little less than six months pregnant when the COVID-19 pandemic hit in 2020. As an Emergency Physician, I am well aware of additional risks that my job often exposes me to on a daily basis. We frequently face physical and emotional strife from unstable psychiatric patients, critically ill nursing home residents, sexual assault victims, and newly diagnosed cancer patients.
People who work in an emergency department tend to understand what comes with the territory: a lot of hard work, unexpected outcomes, and daily traverses of the human experience, from the best emotions you can imagine, to lowest depths of human despair. This is what accompanies caring for every ailment for people from all walks of life. I actually love this part about my job! I never know what I’m going to see when I walk through the doors.
That said, being a frontline physician during COVID-19 has provided me with a profoundly different lens on the pressures surrounding health care workers. And experiencing this while pregnant was pretty terrifying.
By Cynthia Orofo
There are two experiences I will never forget as a nurse: the first time I had to withdraw care from a patient and the first day working on a COVID ICU.
Both were unforgiving reminders that the ICU is a demanding place of work that will stress you in every way. But the latter experience was unique for a few particular reasons. Before the end of that first shift, I had overheard several staff members on the floor speak about their fears, thoughts of the unknown, and their version of the “new normal.” As I realized that life would almost certainly not be the same, I developed my own vision of the “new normal” of health care.
By Lauren Oshry
In 1982, when AIDS was first described, I was a first-year medical student in New York City, the epicenter of the epidemic in the U.S. To the usual fears of a medical student — fears of failing to understand, to learn, to perform — was the added fear of contracting a debilitating and universally fatal infection, for which there was no treatment. But our work felt urgent and valued, and the camaraderie among medical students and our mentors is now what I remember most.
Nearly forty years later, my experience as an attending oncologist during COVID-19 has been different. Yes, I am older and less naïve, but also this pandemic has been managed in fundamentally different ways. Aside from the obvious federal mismanagement, my own institution has deeply disappointed me. The institutional shortcomings we had long tolerated and adapted to were laid bare by the COVID-19 pandemic, and massively failed our patients and morally devastated those of us on the frontlines.
As a provider in a large safety net hospital, I care for a predominantly minority population in the lowest economic bracket. These would be the individuals disproportionately affected by COVID-19, with highest rates of infection and worse outcomes. My patients have the additional burden of cancer.
By James Toomey
In order to make a decision recognized in law — to enter into or enforce a contract, buy or sell property, or get married or divorced — an individual must have the mental capacity the law requires for the decision. As people, especially older adults, develop dementia, their decision-making abilities are increasingly compromised, and the law begins to find that they lack capacity for particular decisions.
The standards governing capacity determinations, however, are notorious for being vague, inconsistently applied, and excessively curtailing the rights of those with dementia. Part of the problem, I think, is the lack of an agreed-upon normative theory for when in the course of dementia the law ought to intervene in individual decision-making. That is why, here on Bill of Health, I’ve previously called for understanding the perspectives of seniors — the population affected by the doctrine of capacity most closely and most often — on this normative question.
In my recent publication “Understanding the Perspectives of Seniors on Dementia and Decision-Making” in AJOB Empirical Bioethics, I’ve begun to do so, reporting the results of an empirical study that I conducted with the Petrie-Flom Student Fellowship in the 2018-19 academic year. The study, which involved an online survey of and interviews with older adults, revealed a heterogeneity of ways of thinking about the problem, supporting a flexible legal doctrine that would assist people in making their own choices. Notwithstanding the diversity, however, the data reveal several conclusions and tensions of interest to academics and healthcare and legal practitioners.
Inequities in end-of-life care have been exacerbated by the COVID-19 pandemic, but have yet to receive the same level of attention as some other health disparities brought to the fore recently.
Quality end-of-life care is focused on reducing human suffering and aiding patients in receiving support during the dying process.
Traditionally, poor quality end-of-life care involves the overtreatment of patients, as in the case of continuing to treat incurable cancer aggressively. However, COVID-19 has introduced new challenges in achieving quality care at the end of life. Specifically, it is now more challenging to reduce human suffering at the end of life because of limitations in providing access to two critical resources: (1) medical care that can relieve physical suffering in the dying process and (2) support, such as loved ones, as well as needed psychological, spiritual, and physical support to cope with the existential threat of dying. COVID-19 has made access to both of these a greater challenge for underrepresented minorities.
By Stephanie Anderson and Carole Montgomery
A deep divide exists in the American health care system between patients’ values and the care they receive.
Let’s start with a story – Marcus was in his mid-40’s when he underwent high-risk heart surgery during which he suffered a brain injury. Afterward, the surgeons at first reassured his family that the surgery itself was successful (his heart was working fine) in spite of his brain injury.
Unfortunately, after many days in the ICU he remained unconscious and was not able to get off the ventilator. Specialists told the family that his brain injury was severe, and he would likely not be able to carry on a meaningful conversation or live independently ever again.
By Shoshana Ungerleider
It was the end of a 24 hour shift in the ICU when the 85-year-old woman I had just admitted with end stage heart failure began having trouble breathing. While I knew she did not desire “aggressive measures” taken to prolong her life, I wondered what that meant in the context of this moment. Even though I was a young medical resident, I knew without swift intervention, she would not be able to survive the night. I ran into the waiting room to search for her son, her medical decision maker, but he had gone home for the night.
I returned to the bedside to see that my patient was tiring as her breathing was becoming shallow and fast. She was awake and I sat down to explain why she was feeling breathless. I explained that her condition had rapidly worsened and asked if she had ever considered a scenario where she may need a breathing tube. She had not. As her oxygen levels dropped, it quickly became clear that we had to act. What wasn’t clear to me was whether this frail woman would actually survive this hospital stay, and if she truly understood what intubation and mechanical ventilation were and whether this would cause her to suffer.
By Marian Grant
The COVID-19 pandemic has laid bare the importance of clearly expressing personal wishes for medical care in emergency situations.
Health systems and providers across the country are seeing how important it is that all of us discuss our medical goals in advance. Not having one’s medical goals known in advance puts a burden on frontline clinicians and loved ones, because it leaves important medical decisions up to them.
You can and should speak up about the kind of medical care you would want, and tell doctors what matters to you. You also should tell those who matter most to you what you’d want if you couldn’t make decisions for yourself.
Cross-posted from The Hastings Center Bioethics Forum, where it originally appeared on May 26, 2020.
By Stephen P. Wood
During a recent shift, I was the primary provider for a man in his 70s who was brought in by ambulance with respiratory failure. He had been sick for two days with a fever and a cough, weak and short of breath. The chest x-ray performed at his bedside revealed the diffuse, fluffy markings that are familiar signs of pneumonitis from COVID-19.
After giving him oxygen to improve his breathing, treating his fever, and running tests that are standard for COVID-19 patients, I clicked the admission button to cue him up for a bed. My patient and I then discussed goals of care and had a frank discussion about advance directives. He did not have an advance directive, but he knew he did not want to be resuscitated. He did not want to be put on a ventilator, go on dialysis, or receive artificial nutrition. He was quite clear and did not hesitate about these decisions. We signed the advance directive and filed it away in his chart.