It’s Time to Get Serious About End-of-Life Care for High-Risk Coronavirus Patients
MARCH 30, 2020 7:00 AM EDT
Dr. Jessica Gold is an assistant professor of psychiatry at Washington University in St. Louis.
Dr. Shoshana Ungerleider is an internist and founder of endwellproject.org in San Francisco.
There is perhaps nothing that exemplifies the sheer magnitude of deaths due to COVID-19 than public health officials’ decision last week to turn a Madrid ice rink into a morgue. They did this, they said, to help families, as funeral parlors no longer felt safe collecting bodies and existing morgues were at capacity.
In Italy, an emergency national law has prohibited funerals completely; elsewhere in the world, including in the U.S., visitors are banned from hospitals. This means that in the coming weeks as coronavirus cases are projected to grow, many Americans will die and die alone.
These are not the deaths or celebrations of life any of us would likely choose. According to a report by the Kaiser Family Foundation and The Economist published in 2017, in the U.S. just 56% of people have had a conversation with their loved ones about end-of-life wishes. Only 27% have documented their end-of-life wishes in the form of an advance directive, and less than 20% discussed those wishes with their healthcare provider. This often leaves families in the incredibly difficult position of making life and death decisions on behalf of their sick loved ones. Ideally, one engages in advance care planning early in life, before a serious illness or medical crisis ensues. But, the reality is, COVID-19 has taken away control over many things, including, possibly, our final days
In the absence of an advance directive, an established health care proxy or available next of kin, the default approach is aggressive, invasive treatment in the intensive care unit (ICU). This traditionally can include placing a thick, hard, plastic tube down your windpipe, inserting needles into your blood vessels, and using machines to maintain your regular bodily functions (a ventilator to help you breathe, a dialysis machine that filters your blood when your kidneys are damaged).
In the new era of COVID-19, the protocols aren’t as clear. Some hospitals are considering a do-not-resuscitate policy for all infected patients. Bioethicists have weighed in on the need for hospitals to create triage committees, a team of nurses and doctors that evaluate COVID-19 cases and remove the burden of rationing care from the individual providers. Given that we know only a minority of elderly people and those living with serious illnesses who are put on ventilators will survive this pandemic to leave the hospital, this is a reality that must be discussed now.
The current projections indicate that the U.S. could have a shortage of some 1.3 million hospital beds and 295,000 ICU beds. Because the country is not likely to meet these needs in time, we must prepare for this emotional and physical onslaught in other ways. Practically, this means we should identify those at highest risk from serious illness and death and then discuss with them whether, in a worst-case scenario, they would want hospitalization and use of a ventilator in the ICU, which could reduce the impending need for rationing care based on who will most likely benefit from mechanical ventilation. We need to be able to communicate effectively with them and their families early on to understand their wishes and be able to provide high quality palliative care in the ICU and eventually hospice
Ideally, palliative care starts early, at the time someone is diagnosed with a life-limiting condition. But the speed and severity of COVID-19 will make that difficult. In order to meet that challenge, we need to build the capacity for more palliative care to be provided at scale. With a looming dwindling of hospital-based resources, this will also require putting critical infrastructure in place now for hospice programs to deliver medications that relieve suffering for patients in nursing facilities and in their own homes.
Aware of this reality, doctors have even started addressing their own end of life wishes and sharing them publicly to encourage others to do the same. Dr. Rana Awdish, an ICU physician at Henry Ford Health System and author of In Shock, wrote on Twitter how she and her colleagues came up with and shared their plans if they were to get sick. They discussed their kids and their pets and their emergency contacts. But they also talked about how they’d rather die at home than be in the hospital and traumatize their own colleagues who would then have to care for them. Even trainees are having these important conversations. For example, residents at Massachusetts General Hospital decided to complete advance directives and assign health care proxies during their shifts at work. Perhaps through taking back control in even the smallest way, our own fears and anxieties about the unknown can be lessened, and maybe even our anticipatory grief.
To some, it might seem a bit morbid or feel like fear-mongering to have these conversations—but it is not. The need to have clear advance directives and discussions about life support is critical and realistic for all of us always, but especially now. Now is the time for action by the U.S. Centers for Medicare & Medicaid Services and Centers for Disease Control and Prevention to institute guidelines encouraging the discussion, so professional medical societies, clinicians and families will start talking. In fact, every nursing home and assisted living facility should immediately talk to their residents about how they would like to be treated if they have a serious case of COVID-19, and who will speak for them if they are unable. And, everyone with a serious underlying medical condition should do the same with their family and physicians. These conversations should include discussing what matters most to them, considering what they are willing to undergo for a chance to get better, and quality of life. This definition is key in these conversations and different for everyone.
It is inevitable that we will be talking about and exposed to death during COVID-19. It is a grim reality, but a reality, nonetheless. As such, it is critical that we start talking about the end of life, before it’s too late. With day to day life feeling particularly uncertain, it is nice to feel like something is still your choice.