During the COVID-19 public health care crisis, as thousands of people are dying in hospitals without loved ones, two Rutgers Institute for Health, Health Care Policy & Aging Research experts discuss death, dying and end-of-life care during the global pandemic.
Elissa Kozlov, a clinical psychologist and instructor at Rutgers School of Public Health, and Johanna Schoen, associate chair of the Department of History at Rutgers-New Brunswick's School of Arts and Sciences, provide some insight about how we should prepare for this possibility.
What does the term a “good death” mean?
Schoen: A “good death” needs to involve the presence of loved ones or their participation in the dying process for the sake of the dying person, so they are not alone, and for their loved ones, so they can better process the experience and grieve.
Unfortunately, loved ones of those who die of COVID-19 are left with the terrible feeling of not having been able to help, worries and regrets that seem almost impossible to process.
How are recent COVID-19 deaths impacting families?
Kozlov: We may not know the psychological toll of losing people to COVID-19 for quite some time as we don’t make a diagnosis until sufficient time has passed. However, there is a complex interplay between trauma and grief made more complicated when deaths are unexpected and untimely. It would not be surprising to see individuals suffer from complicated grief or post-traumatic stress disorder resulting from COVID-19 deaths.
When individuals get “stuck” in the grieving process, we begin to consider psychological interventions. There are certainly elements of how some people are dying from COVID-19 – alone, unexpectedly, unable to communicate with loved ones – that elevate the risk that the bereaved will have a more difficult time grieving the loss.
How can families better prepare for the processes of dying and grieving during this pandemic?
Kozlov: Advanced care planning is more critical now than ever, and families must have a plan in place. Without documentation, our health care system is set up to provide maximal interventions even if the likelihood of survival is limited. If you do not have a DNR or DNI, you will be intubated and resuscitated. If you are unable to communicate your preferences and your loved ones do not know what you want, you will be intubated and resuscitated.
While some of these interventions have improved the chances people will survive critical illness and injury, they are not without negative impacts. Prior studies have shown that some people experience long-term complications after intensive care. These include loss of physical strength and disability; cognitive and psychological impacts such as headaches, depression and PTSD; and an overall reduction in quality of life.
How will COVID-19 affect discussions about end-of-life care and death?
Schoen: The current situation has opened up discussions about the impacts of medical interventions and technologies that might prolong life.
Although many people do not understand the details of the decisions and statistics surrounding DNRs and other advanced care directives, some clinicians have found that COVID-19 has made it easier to talk to patients about end-of-life care and goals. There is a significant opportunity here for discussions about the ways people imagine medical interventions at the end of their lives to take place.
How can we ensure that our loved ones or we would experience a “good death” during this pandemic?
Kozlov: There need to be discussions regardless of age or health status about preferences for different types of treatments and individual values about quality versus quantity of life. If families can have these conversations now and before any future crisis, they will be doing their future selves a considerable service.
It’s much harder to make thoughtful, intentional decisions during a crisis. Still, planning allows you to do research and think about your health care values without the intensity of being in a life-or-death situation. This is a gift you can give to your loved ones, so they don’t have to make those decisions for you if you are unable. We’ve witnessed families labor over these life-or-death decisions, which can cause tremendous guilt, regret, anxiety and stress.