When Patients Die Alone, How Do Families and Health Workers Relieve Suffering?

AMY GOODMAN: This is Democracy Now!, democracynow.org, The Quarantine Report. I’m Amy Goodman, with Nermeen Shaikh. We’re broadcasting from the epicenter of the pandemic, as we turn now to look at the tremendous emotional toll the coronavirus is taking on families when loved ones are forced to battle COVID alone in hospitals or at home. The virus is so contagious that hospitals have been forced to ban family members from tending to their sick relatives in person, often making healthcare workers and the staff of the hospital the only human contact for dying patients, who are relying on technology to say their goodbyes to their loved ones.

These extraordinary circumstances have led to a surge in the need for palliative care specialists — doctors and nurses who focus on relieving pain and supporting patients and their families who are facing such severe, chronic or fatal illness.

For more on palliative care, we’re go to Carmel, New York, where we’re joined by Diane Meier, director of the Center to Advance Palliative Care, professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai. She helped start a 24-hour palliative care hotline for COVID-19 patients in New York City that served nearly 900 people in a four-week period.

Professor Meier, it’s great to have you back on Democracy Now! Why don’t we start off with that big word, with this term “palliative care,” what it means? And what people all over have come to understand is that you have a patient who is in the hospital or at home, and they’re dying alone.

DR. DIANE MEIER: Thank you, Amy. It’s great to see you again.

Palliative care, what is it? I’m so glad you started with that question, because that remains the $64 question in our field. And that is that most people, including health professionals, don’t really know what it is. And it’s very simple. Palliative care is a new medical and nursing specialty — by “new,” I mean it’s about 10 years old — that is focused on the relief of suffering and the best possible quality of life for people living with a serious illness.

So, you can tell from what I said that it is not solely about the dying; it is about people living with serious illness. So, for example, if you have dementia, like Alzheimer’s disease, or emphysema and difficulty breathing or heart problems or you’re on dialysis, those are all serious illnesses, with which people can live and often do live for many years. But those diseases pose a huge burden on ability to function, on symptom burden and on our loved ones, our family caregivers who help us get through this. And the field of palliative care is about trying to reduce that burden and reduce that suffering, not only on patients themselves, but also on those who care for them.

NERMEEN SHAIKH: Dr. Meier, could you talk about what the effect of this virus has been on palliative care and end-of-life care?

DR. DIANE MEIER: So, this virus has had an enormous impact on the field of palliative care in two main ways. The first is that it is obvious to everyone, our fellow health professionals, as well as members of the general public, that there is a great deal of suffering associated with this virus, and not just, as Andrew Solomon said, anxiety, fear, depression, but also physical suffering, like shortness of breath, profound fatigue, recurrent very high fevers, and the symptoms that go along with that.

And if you get to the hospital, if you’re sick enough to need the hospital, are having enough breathing difficulty that it’s a possibility that you will need to be on a breathing machine, once you set foot in the hospital or are wheeled into the hospital, your family is sent home. And they are sent home because we’re not allowing any visitors in the hospital. And part of that is to try to reduce risk to those visitors, since we have so many COVID-positive patients in the hospital. And part of it is to reduce risk to people working in the hospital of asymptomatic family members coming in who are carrying the virus but don’t know it because they still feel OK.

So, under normal circumstances of serious illness, the one thing we can rely on, the one thing that is the silver lining of the experience, is our relationship with our family and our other loved ones, is the human connection that grows and strengthens in a period of serious illness. In this pandemic, that’s the one thing you’re not allowed to have. And I am very concerned, as Andrew Solomon is, that the mental health consequences of people being isolated just when they most need each other, just when they most need their families and their families need them, is going to be enormous.

AMY GOODMAN: If you can talk about what happens, and what you feel needs to happen, in the hospital when the patient is dying, their beloved family wants to be with them but can’t — both that situation and what is the best way to deal with that? And also, the effect on the healthcare professionals, who are so overwhelmed, whether we’re talking doctors, nurses, the staff of the hospitals, already with so many patients, and they also understand they are the last people that this patient will see?

DR. DIANE MEIER: So, you hit on the three elements that I think are important to focus on. The first is: What is the impact on the patient? The second: What is the impact on family and other loved ones? And the third is: What is the impact on clinicians, healthcare workers, who are a witness to this? I guess “brutality” is one word that comes to mind, because imagining people alone during a time like this feels brutal to think about.

So, on patients, when we’re scared, when we’re confused, when we have a high fever, we’re having difficulty breathing, the only human beings we see are covered up entirely. They’re wearing masks. They’re wearing facial shields. They’re wearing gowns and gloves. You can barely see their eyes. It is as if you are in contact with Martians, not human beings. And on top of that, in order to protect healthcare workers, every hospital is maximizing the attempt to keep health are workers out of the patients’ rooms. So, for example, we’re setting people up with IVs and pumps that can be put outside the room, with very long tubing, so that nurses and other staff do not need to repeatedly enter the patient’s room. So, not only are they completely covered in personal protective equipment, their time in the patient’s room is 90% less than it normally would be. So human contact of any kind is markedly diminished because of this pandemic. And as you pointed out earlier, as Andrew pointed out earlier, we are fundamentally and biologically social animals. And when you remove all of the warmth and the interaction and the human contact that we evolved to be critically dependent on, the distress and suffering and confusion is inconceivable.

Then let’s move on to families. Amy, you will remember this, that when families talk to us about looking back on the serious illness or death of a loved one, they always talk about the same two things. One is that their loved one was comfortable, that they weren’t in terrible pain or shortness of breath or very agitated. And the second thing they say is “We were all there. We were all there.” And that gives tremendous comfort, looking back, that when it really counted, we showed up. We showed up for the people we love most. We were there. We left our jobs. We flew across the country. We were there. And families can’t do that anymore. And I think the level of grief and bereavement, and the difficulty overcoming that, when families can’t say, “We were there. He was really comfortable and peaceful. We were all there,” is — it’s never happened before, at least not in recent history. And I think it will lead to an enormous level of complicated grief and bereavement, feelings of shame, feelings of guilt, feelings like “I should have, I should have,” even though there was nothing anyone could do. You can’t visit the hospital when you’re not allowed to visit the hospital. And anything that we in the health professions can do to help overcome that is crucial.

And then there’s the third group, which is us — doctors, nurses, social workers, environmental services staff, food staff. We are witness to this isolation and this kind of — I don’t know if “stigmatization” is the right word. But when you isolate someone, and you try to keep staff out of the room, and you don’t let families in because the patient has COVID, and no one wants to come — we don’t want anyone to come near them, there is a kind of stigmatization that goes with that and that suggests that the patient has become a danger to others — not only to him or herself, but also to others. And that dehumanizes the patient. And so, I’m very concerned about how the normal instincts of doctors and nurses and social workers, and everyone who works in the healthcare system, which is to care and show human support and warmth and to smile and to joke around and to remind the patient that he or she is still part of the human family — all of those have gone away.

So, that brings me to: What can we do?

AMY GOODMAN: We have 20 seconds.

DR. DIANE MEIER: Oh, OK. Well, we’ll have to talk about that another time. But there’s a lot that we can do to remediate that.

AMY GOODMAN: Well, why don’t we say there will be a post-show right now? And we will post it online at democracynow.org. People can go right to it. We want to thank Dr. Diane Meier, director of the Center to Advance Palliative Care and professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai.

And a very happy landmark birthday to our colleague Erin Dooley!

That does it for our show. Democracy Now! is working with as few people on site as possible. The majority of our amazing team is working from home. Democracy Now! is produced with Renée Feltz, Mike Burke, Deena Guzder, Libby Rainey, Nermeen Shaikh, Carla Wills, Tami Woronoff, Charina Nadura, Sam Alcoff, Tey-Marie Astudillo, John Hamilton, Robby Karran. Special thanks to Julie Crosby. I’m Amy Goodman, with Nermeen Shaikh. Thanks for joining us.