There was a time when death commonly took an individual either suddenly or relatively quickly. In her memoir The Year of Magical Thinking, Joan Didion chronicles her reaction to the sudden death of her husband, the author John Gregory Dunne. These reactions are to some extent familiar to us by now. They include “denial,” for example as when Didion simply could not bring herself to accept reality (refusing to read obituaries or to remove John’s clothing from his closet).
This writer has lost two colleagues in much this same way over the past few years, one who collapsed and died of a heart attack while exercising on a treadmill (as he had done regularly for several years), and the other while he was raking some leaves from his deck. In both instances I can recall my initial reaction being similar to Didion’s: This isn’t really true, is it? I just spoke to him the other day, and he’s gone?
The Evolution of Death and Dying
Most readers can likely identify with an experience similar to the above. Teenagers lose friends to car crashes, heart attacks still kill swiftly at times, and death can still strike without warning. However, even given that reality, the past half century has witnessed an evolution in the nature of death and dying, which has moved from being largely an event to being more of a prolonged process. In many ways we have progress in the field of medicine to thank for this evolution. Today, most people do not die immediately from a heart attack, but with treatment can survive and even prosper. Cancer is no longer the imminent death sentence it once was. And so on. Today, a diagnosis does not necessarily indicate impending doom, so much as the start of a process whose outcome is uncertain. While cancer can take a victim quickly, as can COVID, we are all keenly aware of the realities of prolonged suffering with an uncertain ending.
The impact of such a diagnosis, on the patient as well as his or her loved ones, might accurately be called “the new grief.” It is a form of grief that does not strike suddenly, but rather begins with a potentially terminal diagnosis and then proceeds to ensnare the patient along with his or her loved ones for a significant period of time, with no certain outcome. So it has come to be in this era of the COVID pandemic.
Moving Through the New Grief
Some years back my colleague Barbara Okun and I ventured to explore this new grief, in part as an academic interest and in part due to our personal experiences. We were fortunate to be granted permission to interview (with permission along with protection of individual identities) patients and family members at the Dana-Farber Cancer Institute in Boston. We later chronicled these interviews in a book, Saying Goodbye: A Guide to Coping with a Loved One’s Terminal Illness.
It was out of these interviews—from the horse’s mouth so to speak—that we came to identify a process that most of these individuals could identify with. It is reasonable to think that this process that people go through when faced with one potentially terminal diagnosis (cancer) may well apply to other diagnoses, such as COVID. I share it here—in this blog post and one to follow—in the hopes that readers might find it helpful as they negotiate this new grief.
Stages of the New Grief
Dr. Okun and I identified—thanks largely to the actual experiences shared with us—a process that was more or less predictable. For the sake of laying out this process we divided it into phases or “stages.” However, when reading about these stages it’s important to keep in mind that they are not separated by bright lines, but rather blend into one another as patients and their loved ones come to cope with a diagnosis, which can have very different ramifications depending on factors such as age, overall health, and so on.
The first stage of this new grief could aptly be called the “crisis” stage. At this point in time anxiety is the most common reaction experienced by both the patient and his or her loved ones. Obviously, the patient will be confronted by the possibility of developing a severe, even terminal illness. For others, the anxiety can also be severe and may reflect two related concerns. The first is, what are the implications and ramifications of the diagnosis for the family? For example, is the patient a primary breadwinner? Does the patient play a central role in how the family operates? Is the patient the “emotional heart” of the family? If the answer to one or more of these questions is yes, then the anxiety is likely to be deeper and more widespread within the family as members contemplate the potential consequences of the diagnosis for them. (In addition, there may be anxiety for each family member around the issue of whether they may also contract the virus, if the diagnosis is COVID.)
In general, the men and women we interviewed were unanimous in recommending that people have the courage to admit to whatever anxieties they may experience at this stage, as they will find, first, that they likely are not alone in their experience. Beyond that, family members as well as the patient can then work together to find solutions to these anxieties. In some families, for example, another family member may step up and volunteer to take responsibility for organizing a family tradition that the newly diagnosed patient is not able to.
Moving Toward Unity
Once the initial shock of the diagnosis has begun to settle in, the family of the patient most often moves toward marshaling resources in order to deal with the crisis. We elected to call this stage “unity,” as most of our interviewees concurred with that label. Despite what it implies, however, marshaling resources to cope with a crisis can mean very different things to different people, and it’s best to acknowledge this as frankly as possible. Avoiding doing so, we learned, often only leads to resentments that can linger for a long time and exert a toxic effect on the family as a whole.
Men and women who have gone through this new grief have told us that, as with the first stage, honesty will often lead to the best outcome. At this stage, it usually happens that tasks relevant to coping with the crisis become evident. Patients may need help getting to doctor or treatment appointments. It may also be helpful to have a family member present during doctor appointments to take notes so that information is accurately shared (patients rarely accurately recall what their doctor says). There may be a need to take over some responsibility while the patient undergoes treatment (especially if this includes hospitalization). And so on.
Not all family members may be in an equal position to play a role in the unity phase, and it’s best to be honest about this. Still, it is fair that family members be asked to contribute to this unity phase as they are able. Many patients and family members we interviewed expressed the belief that organizing periodic family meetings can be an effective way of, first, being honest about how much various family members are able to contribute given their other responsibilities, and, second, what they are willing to commit to doing.
As families slip into this unity phase they need to be prepared for it to go on for some time. We know, for example, that COVID sometimes strikes swiftly, with profound medical consequences. In other cases, however, it can have significant long-term effects that need to be addressed. The result is that both the patient and loved ones can find themselves having to confront the challenge of unity for some time.
 Didion, J. The Year of Magical Thinking. New York, Knopf Doubleday Reprint Edition, 2007.
 Okun, B. & Nowinski, J. Saying Goodbye: A Guide to Coping with a Loved One’s Terminal Illness, NY: Berkley Books, 2011.