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In palliative care, we are not strangers to grief. As a specialty, we try to alleviate suffering for patients and their families as they navigate the complexities of life-threatening and terminal illnesses.
Palliative care focuses on family-centered care, not just care for the individual. In training, we are taught to view the entire family unit as the patient. As the disease process progresses, our attention ebbs and flows between varying individuals in that family unit. Up front, the diagnosed individual is our focus, with the intention of controlling symptom burden and psychosocial, emotional, and spiritual distress.
As time moves forward and the diagnosed person gets closer to death, or even enters the actively dying stage, focus then shifts toward those who will be left behind. Education about the normal dying process, bereavement counseling, and practices of mourning are common ways we prepare the family for a successful grief process.
Though sometimes used interchangeably, bereavement, grief, and mourning are all distinct from each other.
Bereavement is the experience of loss when a loved one dies. Grief is the response to that bereavement, typically marked by feelings of sadness and nostalgia. The science goes on to tell us that grief is permanent in the sense that we never stop feeling sad about the death of a loved one. However, mourning is the process we undergo to address and cope with that grief to make it less central to our everyday life.
As COVID-19 arrived like a tidal wave over the Northeast, the normal path to mourning was washed away. At the height of the crisis, with critical care units (both the formal and many pop-up COVID ICUs) over capacity with ventilator-dependent patients, things were clearly not business as usual.
At our hospital, we tried to adapt to meet the needs of the situation.
Under the guidance of our team leadership, the palliative service shifted to focus all attention on supporting families. Since visitors were no longer allowed at bedside, we dug in and began calling as many families as we could to give updated clinical information, educate them on the disease trajectory, discuss advanced care planning, and help them process when it was clear their loved one would not survive.
Unfortunately, it seemed like we were having those devastating conversations over and over and over again. The downward spiral felt relentless for patients, families, and my colleagues. Respiratory distress turned to respiratory failure. Respiratory failure required intubation. Intubation turned into mechanical ventilation dependency, worsening labs, multi-organ failure, and eventually death.
Throughout this intense cycle, explaining rapid-fire goals of care and convening family meetings over teleconference, I felt overwhelmed by a realization: supporting families during the pandemic was categorically different than anything I had done in my young career.
Pre-pandemic, I had always seen families struggle with grief since our society does little to support healthy bereavement; we live in a culture that does not engage in the dying process, always trying to romanticize youth and vilify death. And when we do experience the death of our loved one, our daily routine asks us to mourn in a timely fashion for the convenience or comfort of others.
But just as COVID-19 came with novel medical challenges for the diagnosed, it also came with a new set of hurdles for their loved ones.
The virus made people critically ill faster than more well-known diseases, sometimes taking people from independently functional to death in a period of days. This left no time for the families to explore different care options at various facilities, pursue second opinions, or anticipate the death sometime down the line.
Grief was amplified as COVID-19 claimed multiple members of the same family. One person reported losing his mother, father, and sibling all at once. This call was heartbreaking, and unfortunately, too easy from my perspective. By the time I was speaking with this man, he needed no medical guidance: He knew the disease process after losing two loved ones already, understood all the signs were pointing to him losing another, and told me he already had the funeral home director on alert that another trip to the hospital morgue would be necessary in the coming hours.
For some, typical funeral or end of life rituals had to be modified around social distancing guidelines or could not be held at all. For example, some Muslim families asked to be present to clean their loved one’s body and wrap them in a white linen cloth immediately after death as they initiate funeral prayers and rituals. Due to isolation precautions, families were not allowed to have these intimate moments. Families of all religions reported unrest, not knowing how and when they would be able to honor the life of their loved one. In these moments, I could clearly hear that these people needed relief through human connection paired with the ability to witness grief in a community.
But this happened behind two closed doors: one keeping the family from being able to visit the hospital, the other keeping their support system from visiting their home to offer comfort.
Isolation, loneliness, and helplessness were common threads between the individuals left behind.
To me, it felt like the perfect storm to create an entire population of individuals at-risk for complicated grief, or a “chronic impairing form of grief brought about by interference with the healing process.” With the mourning process altered or even halted, the bereaved are at risk of being caught in the acute, intense stages of grief, which, over a long period of time, can be a barrier to successfully bridging back to daily routine.
This traumatic experience mirrors both depression and post- traumatic stress disorder (PTSD). This can go on for weeks, months, or even years, leaving people stunned and unable to move beyond having the grief be the central focus of life. Targeted counseling may be needed to guide the bereaved through a healing process and allow some relief.
If you or someone you know loses or lost a loved one during the pandemic, recognize that there may be significant roadblocks to coping with the loss in a healthy way.
The circumstances of living during a pandemic present a giant, malevolent interference with the healing process. If you feel you need guidance, reach out to a medical provider, call your medical insurance for counselor options, or look for your nearest hospice agency—they may have bereavement groups that are typically open to everyone (even if you didn’t previously use the service).
As the Northeast inches back to normal (albeit a “new normal”), and the rest of the country continues to see an uncontrolled surge in cases, I also have my own mourning to do as a provider. Looking back, these months are all a blur. Weeks and weeks of intensity, sadness, and death. I remember ending my work day and just using all my remaining energy on trying to feel blank or neutral to protect myself from reliving the day. That meant no mental bandwidth to participate in any type of conversation with my wife, family, or friends. Silent dinners, silent board games to keep busy, and silent, sleepless nights.
Through writing, love from my wife and family, and structured debriefing with my work group, I have felt the tension leave my body over the last few weeks and there is space to breathe again, but my mind cannot fully relax as the uncertainty of a second wave hangs in the air.
I wrote the below poem to cope with my own experience. I share it in dedication to the families that I had the privilege of supporting during this crisis.
What happened was neither normal nor fair, and I wish it were different for everyone involved: patient, family, and caregiver. If you are reading this and lost someone amidst the pandemic, I see you and hope that this piece helps you to recognize the roadblocks that were in your way of a full, healthy mourning process. Take your time and ask for help when needed, even if it’s from the moon.
Bridge of Light
Can a moonbeam touch your shoulder?
Can the moonlight hold your hand?
Does the Moon hear my silent scream,
Because I can’t help you from where I am.
I see you being swept away,
Every time I close my eyes.
Fighting a war just to catch one breath,
I turned so you wouldn’t see me cry.
Can a moonbeam kiss your forehead?
Can the moonlight wipe your tears?
I pray the Moon enlists help from the stars,
To lighten up your fears.
A lifetime of tests and trials,
We’ve truly walked side by side.
Now you fight a battle you don’t deserve,
And I’m forced to stay behind.
Can a moonbeam carry my body?
Can the moonlight put me in your place?
To take on your pain, your agony, your breathlessness,
Which no medicine can erase.
The end is never supposed to come,
A distant thought now true.
Our ending was never supposed to come,
But when it did, I was supposed to be with you.
Can a moonbeam carry my sorrow?
Can the moonlight hold a little joy?
Let the Moon reflect the weight of this pain,
But know I’ll still smile when I tell our story.
I don’t know how to reach you,
And if I’m honest I know I never will.
So I beg the Moon to comfort you in my place,
The bridge of light between our distant windowsills.
Can a moonbeam bring a whisper?
Can the moonlight share my final prayer?
If nothing else, Moon, please just echo,
“I love you, I wish I was there.”
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