“This is my fault. I’m the one who got her sick,” my patient’s son tells me via video call. “And I saw the pictures on the news. I saw what they’re doing to the bodies in New York, piling them onto trucks.”
Although he is miles away from where I sit in Boston, he feels terrifyingly close. His eyes, unblinking, take up most of his allotted square on my computer screen. His suffering is so intense, the pain in his eyes so overwhelming, that I look away for a moment — and immediately feel ashamed for doing it. I realize I can no longer think clearly and draw on the empathetic statements I’ve become accustomed to using in conversations like these.
I am a palliative care physician. I manage symptoms like pain, shortness of breath, and nausea for patients with serious illnesses, including those near the ends of their lives. I also counsel my patients and their families on how they might approach important medical decisions they need, or might need, to make. More important, though, I listen to their stories. I sit beside them in their fear and grief. I bear witness to their suffering.
After more than a month embedded in my hospital’s intensive care unit for patients with Covid-19, though, I’ve become increasingly unsure about how to effectively do my job.
Much has been written and tweeted about how the Covid-19 pandemic presents us with an opportunity to consider what matters most and the kinds of medical treatments that would or would not be consistent with our goals and values, an activity called advance care planning. What quality of life would be acceptable to you? Would you want to be placed on a ventilator if you might never come off of it? Would you prefer to die in a hospital, or at home? To be sure, these questions are essential ones that we should all ask ourselves and our loved ones.
But my experience in the Covid-19 ICU has made it clear to me that palliative care and advance care planning under the threat of Covid-19 — or often the reality of it — is problematic. There are three main things I worry about:
First, I’m worried that neither families nor clinicians are in a place where they’re able to give these questions the appropriate level of thought and consideration. In one day in the ICU, I spoke with five families whose loved ones were dying of Covid-19. Though the specifics of their situations were slightly different, the overall tone and message of my conversations were the same. “I can’t imagine what it’s like to be unable to visit your mother. We’re doing everything we can. We’re really worried she may die.” Many of the family members themselves have Covid-19. In self-isolation, they’re simultaneously worried about their loved one and terrified about their own health.
We know from research in serious illness communication that emotion can overwhelm cognition. Patients and families can’t think through important questions unless they first acknowledge and attend to their emotions. In some conversations, like the one I had with my patient’s son, the emotions are too deep and we simply cannot move beyond them to talk about the necessary, practical next steps.
I wonder if many of us on the frontlines of Covid-19 are so overwhelmed by the suffering we’re seeing — and experiencing in our own lives — that we aren’t grasping the inadequacy of tools, such as empathetic language and talking with patients about their goals and values, we use to respond to emotions and think about what lies ahead.
Second, I worry that the usual approaches to advance care planning in the era of Covid-19 presents patients and families with false choices, especially when talking with them about the possibility of dying at home.
Before Covid-19 emerged, even the best hospices were occasionally unable to meet the complex needs of some patients who wanted to die at home. Although hospices around the country are working tirelessly to adapt and respond to such needs, end-of-life care in the coronavirus era is more challenging than ever before. We’re still learning how to deliver effective home-based end-of-life care that is safe for patients with Covid-19 and for their providers. Hospices have limited supplies of personal protective equipment like gowns and masks, and may be facing a dwindling labor pool due to illness and quarantine.
In addition, many of the primary caregivers in hospice at home — patients’ family members — are either sick or in quarantine themselves. In these cases, the hospital may be the only choice, regardless of what matters most to a patient.
Third, I worry that clinicians like me are subconsciously conflating questions about our patients’ goals and values with deeper, far-less comfortable questions around the allocation of scarce resources. My patients’ family members are already asking me whether my recommendations reflect my clinical judgment or “the hospital’s desire to give the ventilator to someone else.” By repeatedly framing the Covid-19 pandemic as an opportunity to engage in advance care planning while the public simultaneously confronts stories about hospitals frantically searching for equipment, clinicians put palliative care at grave risk of being seen as participating in a sort of pre-rationing.
Should hospitals face a catastrophic shortage of resources, palliative care specialists like me will rightfully be called on to provide expert and compassionate end-of-life care to those triaged away from the intensive care unit. Yet we must also be sure that our clinical care and public messaging are entirely distinct from questions such as who should be placed on a ventilator if we don’t have enough of them for everyone who needs one. Genuine attempts to help protect people from receiving care inconsistent with their goals could, if perceived incorrectly, cause unanticipated harm to this field for years to come.
Palliative care specialists often see themselves as the clinicians who can make terrible situations a little bit better. The medications we prescribe can deliver relief. Our words can offer comfort. Our presence can provide connection.
But even as the back side of the Covid-curve feels closer than it did a few weeks ago, all clinicians, including those of us in palliative care, must step outside our professional comfort zones and acknowledge that the standard tools we use to help people make difficult decisions may not be appropriate for the new reality we face.
Health care workers need to shift their expectations for how they can ease suffering and admit to themselves they won’t be able to make every situation less tragic.
And we can’t look away.
Richard E. Leiter is a palliative care attending physician and researcher at the Dana-Farber Cancer Institute and Brigham and Women’s Hospital in Boston and an instructor in medicine at Harvard Medical School. The opinions expressed here are the author’s alone and do not necessarily reflect the views and opinions of the Dana-Farber Cancer Institute, Brigham and Women’s Hospital, or Harvard Medical School.
I am a UK citizen and watched my poor husband gasping for every little breath. His eyes were full of terror and pleading with 3 nurses standing around his bed but doing nothing to make his last minutes anywhere near comfortable in a hospice. No doctor was called and although the actual nursing care was second to none during our stay – my husband’s death to me seemed unbearably inhumane and euthanasia should be lawful to stop these patients experiencing such a terrible end. I did question the doctor the day after but he explained that COPD patients unfortunately do die in this manner unlike cancer patients who are so dosed up towards their end with morphine because of their ongoing pain that they pass very peacefully. My husband did have T6/T7 Chondro Sarcoma which had paralysed him completely so without the use of his arms he was unable to indicate his instinctive needs and every time he was asked if he was in pain he said “morphine” (uttering one word at this time was almost impossible for him and it seemed if there was no pain then no morphine that terrible night. I desperately need this treatment of the dying to end and a less traumatic suffering for patients to allow euthanasia in this country. 2020 surely in this day and age this is such an outdated law causing catastrophic deaths.
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