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The Loss of a 'Good' Death

— Our dying and grieving processes have been disrupted during COVID

MedpageToday
A photo of portraits of Detroit residents who died from Covid-19 lining the roads of Belle Isle State Park.

With the COVID-19 pandemic still at large globally, and with the U.S. recently passing the one million "grave-marker-milestone" for COVID-19 related deaths, we are just now starting to see and feel the true cumulative ramifications of these deaths.

Why do these deaths seem more traumatic? One reason COVID-19 related deaths feel different is because they violate our basic assumption about what makes a "good" death. A good death is one that allows for respect for the human person and their life, is congruent with their values, and affords loved ones the opportunity to say goodbye. Additionally, we equate a good death with one devoid of active suffering and unnecessary pain or fear. However, these ideals have often been reversed during the pandemic, making these deaths feel more traumatic and interrupting the "typical" grieving process. As a result, risk factors for prolonged grief disorder and the increasing demand for mental health resources bring us to the precipice of a potential public health crisis if not considered and adequately resourced.

Tasks of Dying

Charles Corr, PhD, that a good death is one in which four key tasks or needs have been fulfilled: physical, psychological, social, and spiritual. Physical needs include absence of pain or discomfort, and I would argue provides opportunity for human touch. Psychological needs include minimal fear or anxiety and increased emotional support. Social tasks often include opportunities to say goodbye, make amends, and enough human connection to feel engaged (social reciprocity). Spiritual needs could include meaning-making of one's life and death, and opportunities for forgiveness. In the context of dying during a pandemic, many of those tasks were unable to be satisfied.

With the lack of "good" deaths, it is unsurprising that the losses feel so traumatic -- they were traumatic. And traumatic losses place survivors at an increased risk for complicated or prolonged grief disorder. There are numerous risk factors, some inherent to the one grieving, but others specific to the nature of the death: Was the death untimely? Was the death unexpected? Was the death painful? Was the death preventable?

In many of the deaths during or due to COVID-19, the answers to the above questions are an irrevocable and unequivocally resounding: yes. Even when considering deaths among older adults, many individuals were otherwise functional, and there was the promise of more years to be lived. That is partly why families may feel robbed; without the pandemic, their loved one would potentially be here today.

For many survivors, the knowledge of the loneliness, fear, and pain experienced by those with severe COVID-19 leads to guilt, anguish, and an intense sense of impotence. Those feelings can exacerbate feelings of anger if the death is perceived as having been "preventable." This is particularly salient because for the first time in modern history, the average person saw how the scientific community adapts to new information in real time -- with approaches to treatment and standards of practice constantly in flux -- leaving those grieving uncertain of who and what to trust.

Those in the research and applied medical fields understand that recommendations -- preventative guidelines, interventions, and best practices -- often change as we learn more. Medicine is an art as much as a science. But how can that be explained to an entire society experiencing the false steps, the moments that could have changed outcomes, and the acute awareness that this death wasn't inevitable?

Tasks of Grieving

Although there are unique factors complicating COVID-19 associated grief, we also recognize that grief is a healthy, adaptive response to loss, for which the average individual will never need therapeutic intervention. William Worden, PhD, identified four key tasks for helping those experiencing grief. However, that grief and these associated tasks are not immune to the effects of the pandemic.

The first task is to accept the reality of the loss: the salient point here is that "accept" does not mean "at peace with." It means those grieving acknowledge the true nature of the situation. This can be very difficult when there were miscommunications and/or misperceptions about the health status of the dying as they went through stages of illness and various treatments. This situation obfuscated the reality of subsequent death, and families were left on an emotional pendulum, swinging from tenuous hope to abject despair. And that pendulum doesn't stop with death; those grieving may hope it was a mistake, and their loved one is still alive.

The second task is to process the initial pain of the loss. In the case of the pandemic, time could be a confounding variable -- there is an idea that more time equals less grief. But that is a fallacy. Time only helps when you are able to process the grief. In the movie "It Had to Be You," Marisa Tomei uttered (what I consider) one of the most profound Hollywood statements on grief: "Time wounds all heals." She was describing heartbreak, and the fact that time alone heals nothing. Time allows us to heal when we actively engage in working through our pain. During COVID-19, we were in survival mode, and grief wasn't processed; it was often tucked away to be dealt with later.

The third task is one of adaptation, which is subdivided into three domains: external, internal, and spiritual. Worden offers a framework for considering how we adapt to life post death. Externally, we must figure out how our day-to-day life changed because the person is no longer with us. Internally, we must figure out who we are in the absence of our relationship to the deceased. And spiritually, we must work through the existential questions surrounding how the death, and its nature, has affected our fundamental beliefs.

The fourth task is one of connection: Finding ways to continue the attachment bonds with our loved one, while reengaging with life and those around us. This is particularly difficult for many who experienced a pandemic-related loss. They may not have been able to process their grief, yet those around them are expecting the survivor to be further along in their grief process. They ask, "Why aren't you past it?" But that brings us full circle to the second task: when grief was frozen in a time-capsule of events, we weren't safe to process it until much later. Although others may have "moved on," they haven't started their grieving process. The person may be more than 2 years past the anniversary of the death, but the grief locked inside is still fresh and raw.

Other factors further complicated the grieving process during the pandemic. Our limited ability to connect with others and hold funerals deprived many of the social support that accompanies mourning. Further compounding that was the sheer number of losses, both personal and on a larger scale, leading to . Finally, grieving individuals may have had their grief invalidated in what Ken Doka, PhD, describes as being "disenfranchised." Given the significant stigmatization of COVID-19 related deaths, survivors were often bombarded with judgmental questions like, "Was the deceased vaccinated? Socially distancing?" This focus on the how or why reduces the deceased to the disease instead of offering validation of the impact of the loss.

Finding Hope

With the inordinate amount of risk factors for prolonged grief disorder, and concerns about an increase in suicide-related deaths, the need for mental health resources is at an all-time high. Peer-support groups, church-based ministries, and clinical care providers are in demand; yet they aren't the only option for grief-related care. Numerous hospice organizations have expanded their bereavement support services, online communities have flourished, and as social restrictions decrease, there is increased opportunity for communities to come together and find solace.

If you or someone you know is considering suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255.

Rebecca Morse, PhD, MA, is a behavioral and developmental psychologist and thanatologist. She is a past president of the Association for Death Education and Counseling (ADEC) and is currently the Director of Research Training at the Institute for the Psychological Sciences at Divine Mercy University.