The sadness of dying alone – what can we do?
The sadness of dying alone – what can we do?

The sadness of dying alone – what can we do?

This printout has been edited for clarity.

Hello. I’m Art Caplan. I’m at the New York University Grossman School of Medicine in New York City, where I head the Department of Medical Ethics.

I want to talk about an issue that unfortunately COVID-19 made very clear over the last few years, which is how Americans are dying. Unfortunately, we have had close to 900,000 plus deaths in the United States, and if you looked, there were many complaints that the deaths could be prevented.

If you followed the debates and arguments, we naturally got into a lot of discussions about what could have been done with masks, personal protective equipment (PPE), vaccines, or tests to prevent it. Unfortunately, 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 died alone. People were concerned about the infection of COVID-19 in the first year of the outbreak. They did not want to be in the room with a patient with COVID-19. Similarly, many people in nursing homes died by themselves without anyone in the room – no visitors, no relatives, no hand-held hands, nothing nothing.

Incidentally, that included my own mother who died in a nursing home in Massachusetts with my sister by 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 hospital doctors and some of our palliative care workers said, “Well, that’s unacceptable. We need to get more technology in there – more iPads, more iPhones, maybe even offer the chance to go into space with PPE and take a risk to a relative if they wish to be with a dying husband, spouse, child or grandparent. ” I fully supported it and I support it to this day.

Despite these issues being highlighted by COVID-19, the general question is how we die and where we die as Americans before the COVID-19 epidemic. I think we have a problem that requires a general solution.

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

Palliative care, a wonderful step forward in supporting people who are dying, is still not being utilized enough, even in hospital settings. When this is the case, many people only get one or two to three weeks of palliative care before they die. They are still in the intensive care unit 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 are we going to do? What can we do about this difference 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 United States? and other places? “

I think there were a few recommendations that we all need to think about. It is really important that doctors try to start discussions with patients and families very early on the possibility of death when serious illness or a challenge is there that can really shorten one’s life expectancy.

It’s not like you just have to give up hope. I do not suggest that. Among the plans and options should be if you have been out for a terrible accident or if you have a terrible illness, you or you and your family, friends, partners should hear what should happen if it does not go well. It is very difficult to do. I know patients do not want to hear that. Families want hope. Who wants to get around and try to sketch those kind of grim tales? But I think it needs to be done.

Otherwise, families do not 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 home; sometimes it is not. What kind of plans can you make to visit? What kind of arrangements can be made if they are to gather family or friends within a time period of e.g. a month or 2 months? When can they ask for palliative care if they do not want to pursue continued aggressive care?

If we do not plan it, and if we do not encourage lawyers and religious people to plan it, then how are we ever going to be able to break this horrible situation with too many people dying under aggressive technology surrounded by masked people, with the light on in the intensive care unit, or very lonely in the nursing home?

The second big step besides trying to plan, reveal and engage as much as possible is to try to trigger palliative care requests faster. Many of my palliative colleagues told me that they are not being called fast 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 away.

I think it’s something we really need to try harder to do, to try to take advantage of palliative care in the hospital and what it has to offer before. Let’s use the technology relied on under COVID-19. The distant relatives who are far away, the many family members who have, let’s say, many different arrangements in terms of who is married to whom, who has been divorced, and who lives with whom they could all be better engaged, I think, using technology – by using things like iPads and iPhones to bring them closer and let them have more regular communication with the patient.

We have a lot of technology to keep a kidney going – a lot that we can do to measure blood gases. Let’s start using some of our technology to promote and improve communication and to provide support to people who may or may not die. I think we could do better, and COVID-19 tells us we can, and we should.

Overall, I am not saying that we are really going to see a massive shift in the direction of people dying at home. That would probably be too optimistic and maybe not even possible. We can certainly make it more humane and more in line with the values ​​of what people say they want when they die, if we shift more towards planning, discussion and use of technology to make dying a more acceptable experience. .

I’m Art Caplan. I’m at the New York University Grossman School of Medicine. Thank you for watching.

Arthur L. Caplan, PhD, is the director of the Department of Medical Ethics at New York University Langone Medical Center and the 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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