COVID-19: The Sadness of Dying Alone -- What Can We Do?

Arthur L. Caplan, PhD


April 18, 2022

This transcript has been edited for clarity.

Hi. I'm Art Caplan. I'm at the New York University Grossman School of Medicine in New York City, where I run the Division of Medical Ethics.

I'm going to talk about an issue that, sadly, COVID-19 made very clear over the past couple of years, which is how Americans die. We've had, sadly, close to 900,000-plus deaths in the United States, and if you looked, there were many complaints about the deaths being preventable.

If you followed the debates and arguments, we obviously got into many discussions about what could have been done with masks, personal protective equipment (PPE), vaccines, or testing to prevent that. Sadly, the deaths happened. If you looked, you saw that many of the deaths took place in nursing homes, but many of them also took place in intensive care units (ICUs).

One of the problems that quickly became apparent was that people were dying alone. People were worried about the contagion of COVID-19 in the first year of the outbreak. They didn't want to be in the room with a patient with COVID-19. Similarly, at nursing homes, many people died by themselves without anybody in the room — no visitor, no relative, no handholding, no nothing.

By the way, that included my own mother, who died in a Massachusetts nursing home with my sister at the window and with me trying to talk to her on the phone. It affected many people.

I think that led to a discussion — it certainly did here at NYU. Some of our hospitalists and some of our palliative care people said, "Well, that's unacceptable. We've got to get more technology in there — more iPads, more iPhones, maybe even offering the chance to go into the room with PPE and taking a risk to a relative if they want to be with a dying husband, spouse, child, or grandparent." I fully supported that and I support it to this day.

Despite the fact that these issues were highlighted by COVID-19, the general question of how we die and where we die as Americans predates the COVID-19 epidemic. I think we've got a problem that requires a general fix.

If you ask most Americans where they want to die, something like 80% of survey respondents say at home. That may not be realistic, but that's certainly their wish: that they would like to die at home with familiar surroundings and familiar people. A total of 60% of Americans actually die in hospitals in intensive care and 20% die in nursing homes. We've got a big gap still between what people want and what actually happens.

Palliative care, a wonderful step forward in terms of supporting people who are dying, is still not utilized enough, even in hospital settings. When it is, many people only get a week or two or three of palliative care before they die. They're still in that ICU bed and still under very intensive medical care for far too long.

A Lancet Commission was formed by The Lancet, the distinguished British publication. They asked: "What should we do? What can we do about this disparity between where people say they want to die, how they want to die, and what's going on in terms of how they actually die, both in the US and elsewhere?"

I think a couple of recommendations came to the fore, which we all need to be thinking about. It's really important that physicians try to initiate discussions with patients and families very early about the possibility of death when serious illness or a challenge is there that might really shorten one's lifespan.

It's not that one has to simply give up hope. I'm not suggesting that. Among the plans and the possibilities have to be if you've suffered a terrible accident or if you have a terrible disease, you or you and your family, friends, partners need to hear what's going to happen if things don't go well. It's very difficult to do. I know that patients don't want to hear it. Families want hope. Who wants to come around and try to outline these kinds of grim tales? But I think it must be done.

Otherwise, families don't have time to think about whether they can take someone home. Could they hire help? Where in their culture is the best place to die? Sometimes it's at home; sometimes it isn't. What sorts of plans can be made for visiting? What sorts of arrangements can be made if they have to get the family or friends together within a time period of, say, a month or 2 months? When might they ask for palliative care if they don't want to pursue continued aggressive care?

If we don't plan for it and if we don't encourage lawyers and religious people to plan for it, then how are we ever going to break this horrible situation of too many people dying under aggressive technology surrounded by people who are masked, with the lights on in the ICU, or very lonely in the nursing home?

The other major step aside from trying to plan, disclose, and engage as much as possible is to try to trigger requests for palliative care sooner. Many of my palliative care colleagues told me that they don't get called soon enough. There are things that they might want to do to provide emotional support, sympathy, and religious support, in addition to medical support, that they could initiate earlier than 1-3 weeks before someone passes.

I do think trying to take advantage in the hospital setting of palliative care and what it has to offer sooner is something we really need to try harder to do. Let's use that technology that was invoked during COVID-19. Those distant relatives who are far away, the multiple members of families that have, let's say, many different arrangements in terms of who's married to who, who's been divorced, and who lives with who, they could all be engaged better, I think, using technology — using things like iPads and iPhones to bring them closer and to let them have more regular communication with the sick person.

We have plenty of technology to keep a kidney going — much that we can do to measure blood gases. Let's start to use some of our technology to advance and enhance communication and to give support to people who may be dying or who are likely to die. I think we could do better, and COVID-19 tells us that we can, and we should.

Overall, I'm not saying that we're really going to see a massive shift toward people dying at home. That would be probably too optimistic and maybe not even possible. We sure can make it more humane and more consistent with the values of what people say they want when they die if we shift more toward planning, discussion, and the use of technology to make dying a more tolerable experience.

I'm Art Caplan. I'm at the New York University Grossman School of Medicine. Thanks 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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