A Lesson from Hospice Care
Our own Theresa Brown had another moving column in the NY Times this week:
I Accept Death. I Hope Doctors and Nurses Will, Too.
A lesson from hospice care might help.
Bodies being moved into a refrigerated truck outside of Wyckoff Heights Medical Center in Brooklyn, in April.
Bodies being moved into a refrigerated truck outside of Wyckoff Heights Medical Center in Brooklyn, in April.Credit...Dave Sanders for The New York Times
Nurses crying. That’s what I hear from the front lines treating Covid-19 patients. A nurse will begin the shift crying and end it crying. Crying. And we are not a profession that cries easily.
“Untenable” is how the sister of Dr. Lorna Breen, a physician in New York who died by suicide in late April, described her sister’s work situation. She was right. In hospitals with Covid-19 patients, understaffed clinicians often lack sufficient personal protective equipment and tests for the virus, and they fear for their own lives. These conditions would wear on anyone. But they amount to a staggering burden for doctors, nurses and health workers of all kinds whose deeply ingrained duty is to save the lives of their patients.
These medical workers remain devoted to curing and easing the pain of the desperately ill. But what can be done about their pain? Their feelings of failure? Frontline clinicians all over the country are experiencing anxiety, insomnia, a sense of acute inadequacy, and feelings of being betrayed by hospital administrators. Many will likely end up with PTSD. Helplessly watching so many people die, especially when many of them die without their loved ones present, is professionally “untenable.”
We know there is no universally effective treatment for the sickest Covid-19 patients. But their deaths are clearly not the fault of their caregivers. Is it possible to ease clinicians’ burdens so that they feel less personally responsible when these patients die? I believe that another type of care situation, that of a hospice, may offer some lessons.
The most fragile Covid-19 patients are not unlike hospice patients: There is no cure for their condition. While they differ from hospice patients — their deaths often come on suddenly and cannot be foreseen — clinicians might more easily make peace with their deaths by viewing them through a hospice lens.
Even though we are all going to die, death fits uneasily into the world of health care. Fundamentally, health and healing apply to the living, not the dying or the dead, and helping the living get better is why most nurses and doctors got into this work. When I worked in oncology, I saw this principle acted out by physicians who viewed death as failure, and nurses who equated talking honestly about bad prognoses with destroying patients’ hope.
Hospice care approaches death very differently. Practicing as a nurse in home hospice, I understood that patients were going to die. The goal was for them to have the best life possible for as long as possible and to die with minimal distress. Some people associate hospice with “giving up” on dying patients, but that is mistaken. Hospice staff do not hurry death along. Rather, hospice clinicians concede that curative treatment either does not exist for, or has been declined by, the patient, and accept that patients will die under hospice care.
As a hospice nurse, I managed symptoms — pain, trouble breathing, delirium — treated wounds, listened to stories from the past and acknowledged hopes and fears for the future. My intention was that all of my patients would leave this earth without suffering, and though that wasn’t always possible, I tried.
People often say that hospice nurses are angels. I tended to demur and say, “Nope, I’m human.” What the praise shows, I think, is that being comfortable with death is unusual. “Comfortable” is the wrong word: I accept death. I accept its inevitability, but also its importance. Death is the end of each person’s time on earth; it is a privilege to care for people in that moment. I embrace the cycle of life while recognizing the sadness of every death.
(That acceptance is somewhat conditional, though. Two and a half years ago, when I was diagnosed with breast cancer, I chose to take a leave from hospice work. My diagnosis brought the cycle of life a little too close.)
What’s more, a century ago, all of us would have been much more familiar with death than we are now. There were no high-tech emergency departments or I.C.U.s; most people died at home. Modernity made it possible to hide death in hospitals, behind beeping machines and snaking tubes and wires. But now that the entire world is threatened by a previously unknown virus, death has once again come closer.
I am not suggesting that health care workers become indifferent to Covid-19 deaths, or that a certain amount of death from this disease should be callously dismissed as inevitable. No. Instead, I’m urging nurses and doctors to feel less overtly responsible when Covid-19 patients die. As a hospice nurse, I never experienced a patient’s death as failure. Some deaths seemed unjust in a universal sense, like a young mother succumbing to cancer or a dying patient saying she was denied the full scope of cancer treatments because she was black. But the trajectory toward death — I accepted it.
When a patient dies on home hospice, a hospice nurse legally pronounces the death by calling the medical examiner and getting the body released. At pronouncements I did the required paperwork, and I also helped hold, or emotionally contain, the death for everyone gathered. I witnessed the ending of a cherished life and honored loved ones’ grief.
Hospital staff caring for Covid-19 patients need someone to help them hold all the deaths. It is too much to feel responsible for so many imperiled lives, day after day, to rub up against one of the most challenging and often unacknowledged paradoxes of modern health care: Even though we work very hard to heal people, sometimes they still die.
It might be possible to plant a hospice nurse in every Covid-19 I.C.U., but frontline clinicians can also do the work of acceptance by admitting that despite their training, intelligence, tenacity and technology, patients will continue to die of Covid-19. That fact is tragic, and knowing that the mortality rate has been compounded by the failings of our health care system doesn’t help. But it is still possible that the sum of human suffering in this situation can be lessened if nurses and doctors put the blame for their patients’ deaths where they belong — on the virus, not on themselves.
Theresa Brown (@TheresaBrown) is a nurse and author of “The Shift: One Nurse, Twelve Hours, Four Patients’ Lives.”