No One Should Die Alone: Changing End-of-Life Care During COVID

Arthur L. Caplan, PhD


October 26, 2021

This transcript has been edited for clarity.

Hi. I am Art Caplan. I'm at the Division of Medical Ethics at the New York University Grossman School of Medicine.

In my line of work running the medical ethics division, sadly, one of the toughest jobs I have is to get involved when there are disputes among family members or between family members and doctors about end-of-life care for terminally ill patients. How far do you push aggressive care? When do you back off? How do you manage a good death? Do you have hospice? Do you have adequate hospice? Can they go home and receive hospice care?

One of the toughest issues that COVID-19 created is deciding what to do with a highly infectious patient who's dying and you're very afraid that you're going to communicate that disease, whether it's COVID-19, Ebola, Zika, or some other highly contagious disease, to family members who want to be with the dying person, staff, chaplains, or others.

Many facilities, both nursing homes and hospitals, would not let anybody in the room of someone who had COVID-19 for fear of infecting that visitor, staff member, or family members. My own mother died in a nursing home with my sister at the window, trying to hold up messages to her as she died because they would not let anyone in the room.

I have to give some praise to one of our hospitalists here at NYU. She worked on this issue and she and I talked about it. She came up with an agreement that we would not let people die alone, and I don't think we should. If a family member is willing to go into the room with a person, we owe it to them to provide protective gear, explain the risks of being there, and let them make the decision as to whether they want to take that risk to be with their dying loved one.

If staff members want to go in — a chaplain, someone trying to provide meals, or just to hold somebody's hand — I don't think we should require it. I think we should let people volunteer. Again, the obligation is to be vaccinated and make sure you have the proper protective gear.

I also think we need to set up hospice a little differently than we have in the past, with more iPads, iPhones, or possibilities for electronic communication that are easy to use so that someone who is really ill, elderly, or has dementia can use those technologies to have a semblance of stimuli and even a sense of companionship.

I learned a lesson from COVID-19 in dying and infectious disease. We have improved our end-of-life care. Palliative care is much better. Many people are very good at it, but we can't abandon it even when there are risks associated with the reason the person is dying. We now have vaccination. We have protective gear. People can discuss whether one person can go in, try to make it as safe as possible for them, let the staff understand their options and risks, and decide what they want to do.

We have to try harder to make sure that no one dies alone. That's not the right way to manage dying in any sort of plague.

I'm Art Caplan at the Division of Medical Ethics at the New York University Grossman School of Medicine. Thank you for watching.

Arthur L. Caplan, PhD, is director of the Division of Medical Ethics at New York University Langone Medical Center and School of Medicine. He is the author or editor of 35 books and 750 peer-reviewed articles as well as a frequent commentator in the media on bioethical issues.

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