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Palliative Care In the Era of Covid



by: Helen Kao

My sister, who is immune-compromised from breast cancer treatment, confided to me a few weeks ago, “I’m afraid if I get Covid, I’m going to die alone, in a cold hospital bed, suffocating on my own sputum.” As a palliative care specialist, the first thought in my mind was “How in this country would we allow someone to die alone, suffocating?”

Our country has focused considerable attention on the valid question of whether we have enough ventilators. But as a palliative care physician, the additional questions I ask are: Does every critical Covid patient want a ventilator? For whom does a ventilator provide no benefit? Or cause harm? And how will we care for an upsurge of dying patients in this country?

For decades, palliative care specialists have been asking questions like these by supporting patient-driven care. The foundation of such care is honest discussion when certain medical interventions will not be helpful based on someone’s baseline health condition. Ventilators can be a critical bridge to support someone through Covid. But when a person is frail—with multiple health problems, diminished organ function, decreased functional status—the aftermath of resuscitation and prolonged life support with a ventilator is bleak. Most often, these individuals die in the intensive care unit (ICU). Should they survive, many are severely and permanently impaired, both cognitively and physically.

The rightful concern about ICU resources has led many to measure adequate care by how many ventilators we have. This focus comes at the expense of addressing how we will support those who will die despite a ventilator. For those who are already frail, a ventilator provides false hope for recovery, while diverting attention from palliative care which can relieve suffering. Equally tragic, given hospital visitation restrictions, many ventilated Covid patients will die with tubes and lines inserted into their bodies, but without family to hold their hand.

Palliative care can attend to those who decide that ICU hospitalization and undergoing invasive procedures (such as ventilation) are not the manner in which they wish to spend the final phase of life. For many people who are closer to their last years of life than the first, choosing comfort rather than intensive hospital care helps relieve anxiety and fear, and can improve the quality of their final days.

The specter of dying alone conjures nightmares of suffering--whether it be enduring pain or struggling for air. While these fears are magnified by the pandemic, they are not new. These are the same concerns human beings have long had about how we live and die. Covid has added a new unknown to contend with. But Covid is no different from pneumonia or sepsis for many vulnerable people already weakened by advanced illness or frailty. Palliative care relieves suffering in multiple ways: using medications to reduce pain and shortness of breath, counseling patients and families on what to anticipate at the end of life, helping patients complete life tasks before death (recording a memoir, saying good-bye, or holding onto dignity in the face of debilitating disease), and supporting bereavement for survivors in the aftermath of death.

This pandemic is calling upon the full force of this country’s palliative and hospice providers. We meet patients wherever they need care (in the hospital, a facility, or at home), even when visitors are otherwise restricted. We can teach our healthcare colleagues how to elicit patients’ goals, convey realistic options, relieve suffering, and support families through the fear, stigma, and isolation brought on by Covid. With rapidly rising numbers of Covid patients, we must adapt to meet the end of life care needs for the thousands of patients who are dying.

Ventilators are essential in the response to Covid. But the measure of our national character should include how we relieve suffering and provide compassion at the end of life.

Comments

Dan Matlock said…
Helen, thank you for this post. This captures so much of what has been on my mind lately. We have this challenge in modern medicine of balancing the technical (ventilators, hydroxycholoroquine, antibodies, etc) with the human (suffering, dying alone, empowerment, agency). I'm coming to a conclusion that the VERY best 21st century doctors and nurses embrace both. In this early phase, we have rightly focused on the technical but we are missing a huge opportunity to also rightly focus on the human...thank you!

Our team/hospital developed a one page tool to at least talk about life support at a time of COVID. https://patientdecisionaid.org/covid19/ Not sure it is right but it is free to use and people make take the language and run with it. Hopefully we'll keep flattening things and documents like this won't be necessary.