Doctors & Dying: Caring for Caretakers by Elizabeth Glass-Turner
In the tug of prolonged strain, physicians, like their patients, are vulnerable. Some corners of the United States remain relatively quiet and unaffected by outbreaks of the coronavirus, Covid-19. In these areas, extra sanitizer, virtual appointments, and doctors’ office face coverings are the cue that something is happening elsewhere. But in other regions, despite the summer months, health care systems are overwhelmed; at the time of writing, Texas, Arizona, and Florida are being pummeled by significant spikes. For some cities, hospitalists have seen a steady stream of critical patients for months.
For doctors, nurses, respiratory therapists, anesthesiologists – anyone who spends hours in personal protective gear, anyone who spends months caring for critical and dying patients – several dynamics are changing the way in which they encounter death. This is significant for clergy caring for burned-out parishioners; it is significant for laypeople who approach their career in medicine as a vocation; and it is significant for hospice chaplains and workers, and for hospital chaplains.
One journalist, writing on the challenges of administering last rites during a pandemic, observed:
“The Coronavirus has led the United States to the valley of the shadow of death. In just three months, a microscopic particle has laid bare human mortality. The entire nation has worked to avoid death, shutting down cities, masking faces in the streets, and isolating the dying from their loved ones in their final hours. And yet, more than 100,000 people have died, and often, died alone.
Many rituals, a guide through life’s most sacred moments, have been impossible. Children said final goodbyes to dying parents through windows or on FaceTime, if they bid farewell at all. Only rarely have religious leaders been allowed into hospitals and nursing homes. Families attend funerals on Zoom.
The country is facing a deeply personal crisis of spirit, not only of health or economics. A virus has forced a reckoning with the most intimate questions we have, questions not only about how we live, but also about how we die. About what we can control, and what we cannot. About how to name human dignity, despair and hope. And especially about how to make meaning of our final hours on this earth.
‘This major disaster is going to change our relationship to death; I’m not exactly sure how, but I am certain it will,’ Shannon Lee Dawdy, professor of anthropology at the University of Chicago, said. A century ago, priests were ‘answering sick calls night and day,’ one Catholic newspaper reported at the time. Now nurses and doctors, not spiritual leaders or families, are most likely to be death’s witnesses.”
In cities like Boston, priests occasionally have been allowed special clearance to administer last rites in personal protective equipment. During the early coronavirus outbreak in Italy, priests were given some freedom within pandemic protocol to visit the dying; some who offered spiritual care to coronavirus victims themselves died of it.
Meanwhile, American hospital chaplains accustomed to offering comfort through personal presence have struggled to serve patients and family members through the distance of a device screen. Last spring, many hospitals put restrictions on chaplain presence due to shortage of personal protection equipment. Other chaplains are present in hospitals and able to respond to a request for their presence if they don protective gear and follow protocol. Distanced or present in mask and scrubs, chaplains are offering support not only to patients and family members but to exhausted health care workers. One journalist writing on the changes in hospital chaplaincy noted:
“The infectious nature of COVID-19, the disease caused by the virus, has changed everyone’s jobs in healthcare, including chaplains. The obvious shift is the inability to physically visit patients in hospitals to be a resource to them and their families.
The subtler changes are the extent of tending to those who tend to the ill. It’s watching out for what [chaplain David] Carl describes as ‘compassion fatigue and burnout’ among healthcare workers. Because nothing is routine now in healthcare.”
One chaplain noted how fatalities took a toll on New York City doctors during the tragic spike in the city: “How do I help a nurse who is new to nursing and has walked into all this death and it’s nothing that she had ever imagined? …This is very hard because this is personal. No patient is a number. And this is a very good hospital. Our patients usually live. And to have so many of our patients not making it — it’s even hard on the seasoned doctors.”
Even experienced chaplains, who have developed routines and habitual pressure valves to let off steam from regular engagement with grief, aren’t immune from the additional strain of providing care during a pandemic. As one journalist observes, “For most hospital workers, as for so many others around the country and the world, the last couple of months have been something like a prolonged trauma. ‘We’re all living right on the cusp, in this buzzing, anxious place’ [says Reverend Kate Perry]. She’s seen hospital workers who are typically reserved, now living on the edge of panic. ‘Every patient, family, and staff is all living with the same emotions,’ she says. ‘They feel anxious and helpless and this deep sadness. And then there’s this anger.'”
Usually, hospice workers provide robust, sensitive end-of-life care for dying people, from the elderly to cancer patients to a variety of patients; occasionally, patients rally and make a partial recovery, even able to leave hospice care. Whatever the outcome, hospice caregivers and facilities excel in quietly tending to the physical needs of the dying and the emotional needs of their family members, shepherding them through the process of dying, death, and loss, answering mundane questions, being present in grief.
But with Covid-19 patients, isolation is often required to contain further spread. For some patients, their last moment to speak is right before they are sedated and placed on a ventilator, so the good-bye may come weeks before the moment of possible death. Not only that, often critical Covid patients take a quick turn for the worse, so that even if one family member is allowed to come to the hospital, they may or may not make it in time. The loss of a typical progression of dying, the loss of hospice or chaplain bedside presence, these are also fatalities of this disease. Not only are family members unmoored and chaplains frustrated at a distance, but in strained, crowded Covid units, at times doctors find themselves attempting to calm patients terrified of being intubated and dying; and as chaplains noted above, even seasoned hospitalists have been caught off guard by the sheer number of fatalities during the worst spikes.
Just like testing and treatment protocol are becoming more familiar and hopefully more efficient, as time progresses, chaplains and hospice workers will find new means of offering care to the dying. Last spring, hospice workers creatively tackled obstacles to meaningful connection in a variety of ways. Hopefully, curves will flatten in Miami, in Houston, in Tucson, relieving pressure on overtaxed hospitals and exhausted doctors; hopefully, spikes will be prevented in other states on the edge of exponential growth.
In the meantime, health care workers on the front lines of Covid outbreaks face unprecedented losses, often without the physical presence of chaplains or hospice workers to bear the brunt of witnessing death. What might be some starting places for clergy and chaplains spiritually caring for medical caretakers?
Hospice resources are extremely valuable for everyone – pastors, laypeople, and those working in medicine. If exhausted doctors are feeling the absence of hospice workers, there are still bite-sized, helpful hospice resources that can help provide a new lens with which to approach dying patients – even in unbelievably hectic times. For example, often in-home hospice nurses have short pamphlets they give to family members. While medical professionals are familiar with the basic biology of the dying process, hospice resources also frame the process of letting go and grieving. For instance, while this printable resource is primarily for families of terminally ill people, a portion of the caregivers section is relevant to frustrated specialists encountering critical patients suffering from a little-understood disease, Covid-19, still being researched: “Caregivers are often overwhelmed by the intensity and mixture of emotions they feel. These may include: Fear that you do not know the right thing to do and that you are failing as a caregiver mixed with moments of realization that you are doing the best you can and amazement that you can do as much as you are doing.” These kinds of insights can help reinforce the reality that family caregivers and doctors alike sometimes experience very similar dynamics. In other words: this response is not unusual; it is common; you are not alone. In The Family Handbook of Hospice Care, the physical toll of grief is named: “Grief can take a toll on you physically. You may lose interest or gain interest in food. You may lose weight. You may have intense dreams or disturbing sleep patterns—if you can sleep at all. You may be extremely restless, unable to concentrate or relax. Furthermore, grief can hurt: You might feel a knot in your stomach, a tightness in your throat, or a heaviness in your chest. Often grief requires more energy than you would need to chop wood. You may require lots of rest to maintain your health.” In areas hit by a surge of infections, many ICU nurses and specialists are simply – grieving; or, they would be if they had the energy to do so. Grief can be delayed, but it will come out in some form or another eventually.
Be ready for both the curve and the flattening. In the middle of a huge spike of positive cases, hospitalizations, and fatalities, few ICU nurses will have time or energy to read up on a theology of death and dying, or the problem of theodicy – how suffering can exist if there is an all-powerful, all-good God. During a crisis, there’s barely energy left over just to do laundry. The waxing and waning of relative normalcy vs an explosion of emergency can also be captured in Ignatius’ approach to seasons of life as “consolation and desolation.” If you’re a chaplain or physician in the midst of relative normalcy (or “consolation”), now is a moment to explore resources and shore up mentally, emotionally, and spiritually. Now is the time to call up a pastor or professor friend and talk through hard questions; now is the time to read God on Mute. However, for doctors numb with exhaustion, forcing themselves through rote motion each day (“desolation”), you probably simply need to eat, sleep, sweat, and laugh daily. Though Ignatius was addressing Christians, some of his advice would be picked up later by recovery groups as well: “in a time of desolation, followers of Christ should practice the habit of recalling God’s faithfulness in prior times of desolation; resist the temptation to see suffering as pointless; resist desolation through meditation and prayer; avoid making big decisions, “because desolation is the time of the lie—it’s not the time for sober thinking. That is, in our disheartened state, we’re more prone to be deceived”; pay attention to the spiritual insights found during desolation; and confidently look for the quick return of a season of consolation.” It can be challenging to see the possibility of a season different from whatever you’re in now; but even identifying these rhythms can encourage the exhausted or motivate the distracted.
Develop a Personal Ritual; Don’t Feel Ashamed of PTSD
Rituals help order chaos; they are, as someone once described, a kind of “scaffolding” exterior to our own emotions. Rituals also pause activity out of deference to something bigger. In the absence of chaplains, medical workers of any or no faith may find a swift motion, gesture, or pause helpful in marking the passing of a patient. A few seconds holding their hand, silently offering a quick thanks for their life, or even folding their blanket before it is taken to laundry can help acknowledge loss of life before moving on to the next pressing need.
After several successive losses in my own life, I had simple black silicone bands debossed subtly with the words I’m Grieving. On especially hard days, I wore one. The simple visual cue often gave family members quick insight into a mood, and sometimes it opened up meaningful conversations with strangers. I mailed some to others going through season of grief. Decades after the common use of black mourning armbands to signal grieving in public, the simple wristbands were a good modern substitute. In times of grief and loss, tangible items are valuable in marking things that are difficult to verbalize and express.
Tangible touchstones are also helpful for anyone with PTSD. Doctors, clergy, military medics, chaplains, nurses – people in all these professions sometimes come away with post-traumatic stress. Panic attacks, flashbacks, insomnia, obsessive habits – none of these experiences are shameful; none of them indicate a lack of faith or a lack of expertise or a lack of professionalism. Certainly, none of these experiences or others indicate a lack of strength. They simply mean we are all finite, neurological creatures.
It seems likely that we have quite a ways to go in order to flatten curves, wait for vaccine production, understand the long-term health impact of this virus, and discover whether or not yearly vaccines, as with influenza, are necessary. Would you describe your days as being in a time of consolation or a time of desolation? Are you finding a need for ritual – for scaffolding outside of yourself? Take it gently. Remember – for now is not forever. And recall the words on how, “even in the darkest places, joy and goodness can be found” from International Justice Mission founder Gary Haugen: “Joy is the oxygen…”
ADDITIONAL RESOURCES for PASTORS & MEDICAL PROFESSIONALS:
Physicians Start Hotline for Doctors Struggling with Mental Health
Physician Support Line: For Doctors Navigating Covid-19
A Caregiver’s Guide to the Dying Process: The Hospice Foundation of America
When Death Enters Your Life: A Grief Pamphlet for People in Prisons or Jails
Spanish Language Resources: from the Hospice Foundation of America
For American Healthcare Workers Coping with Pandemic Stress: from the CDC
For Emergency Responders Coping with Pandemic Stress: from the CDC