End-of-life care that provides clarity and dignity. We talk about the challenges of providing palliative care in the middle of a pandemic.
Dr. Sunita Puri, director of palliative medicine at the Keck Hospital & Norris Cancer Center of the University of Southern California, where she also leads the ethics committee. Author of “That Good Night: Life and Medicine in the 11th Hour.” (@SunitaPuriMD)
The Challenges Of Providing End-Of-Life Care In A Pandemic
Dr. Sunita Puri, director of palliative medicine at USC’s Keck Hospital, specializes in preparing patients and their families for the worst case scenario. But as the coronavirus crisis forces most non-emergency health care work to go digital, she’s had to have those intimate and often deeply uncomfortable conversations through a screen. This makes those conversations even more challenging than usual.
“Part of, I think, the magic of practicing palliative medicine means using our words and our body language very carefully to have these sorts of high stakes discussions,” she says. “We’re having to think creatively about how to use technology to allow for some degree of connection.”
That connection can make all the difference in helping patients and their families feel secure if they ever have to make that most difficult of decisions: pulling a loved one off of life support.
Dr. Vicki Jackson, chief of the division of palliative care and geriatric medicine at Massachusetts General Hospital, says that when people confront those difficult questions around their own mortality, it’s like “the veil seems a little less opaque.”
“I think although there is difficulty, when there is connection, there can be real beauty,” Jackson says. “Every time we’re able to help people say what’s important to them and say how it feels, it does feel like it’s a little bit of a bright light in this very difficult time.”
Puri says she’s seen more people, and more health care workers, confront these questions during the coronavirus pandemic, now that the prospect of unexpectedly winding up in the ICU is more likely for most people. Although having those conversations can be difficult, even terrifying, they’re still deeply important, Puri says.
“So much of what I encourage people to do is to muster the courage to talk about something really difficult,” she says. “Because it is such a gift to yourself and to the people you love, and to the health care system.”
Dr. Puri and Dr. Jackson spoke with On Point’s Meghna Chakrabarti about the challenges of providing dignity and clarity to patients and their families during a pandemic, and how we can normalize having uncomfortable discussions about death before it’s at our doorstep.
What is palliative care?
Dr. Vicki Jackson: “Palliative care is a medical subspecialty where we focus on caring for patients with serious illness and we focus on quality of life. I always say when I walk into a patient room, my job is to help you live as well as possible for as long as possible. And we do that by finding out what’s important to a patient, understanding their goals and values, making sure their symptoms are in good control, understanding how they’re coping emotionally and spiritually and how their family is doing. And we’re really an extra layer of support to their primary team — whether that be their oncologist, their critical care doctor, their heart failure specialist — and to sort of journey along with them in this process of living with a serious illness, which, as it turns out, is pretty tough.”
On how isolation is affecting palliative care patients
Dr. Vicki Jackson: “I was in the emergency department today with patients who were very ill and they’re alone. And the patient feels more anxious and vulnerable. And the family members feel anxious and vulnerable. And in some cases, if somebody was living in an assisted living or a long term care facility, their family may not have seen them for weeks. And now they’re suddenly in the hospital and quite ill. So that disconnection is really profound.”
Dr. Sunita Puri: “It’s heartbreaking, the fact that families can’t be together at these really difficult times. And even if we’re allowing patients to have visitors for some period of time, the risk and concern of their own health, the visitors health, the family members, there’s just such great uncertainty. It’s incredibly difficult. It’s something that we have never seen before, and it’s incredibly humbling how that lack of human connection makes all of these difficult conversations about being sick so much harder.”
On the devaluation of palliative care
Dr. Sunita Puri: “I think one of the chief misconceptions is that we call palliative care when there’s ‘nothing else to do.’ Another misconception is that palliative care is the same as hospice. And I think this cuts to the core of what you mentioned, which is that in my medical training, I was absolutely socialized to keep people alive. When you were on night shifts in the ICU, that was what you focused on, even if, as I recall from my own training, I would put people through a tremendous amount of suffering that I now regret because I was focused on keeping them alive. And I think when you identify your job in that way, then starting to make space for more nuances, like, is keeping someone alive the same as giving them a quality life? Just because we can do things in medicine doesn’t mean we should do those things for a specific patient in a specific context. And those were concepts that I think were not taught at all in medical school.”
On how the pandemic is bringing people face-to-face with their mortality
Dr. Sunita Puri: “Even before COVID, if you ask most people how they would want to die, very few people would elect being in the ICU with unfamiliar people around them and tethered to the world with tubes and lines and machines. I think what COVID has done is brought into sharp focus the need for people of all ages and all states of illness or health to actually think these things through before COVID or another illness strikes.”
“… I think this is a situation in which some of the work we do in palliative medicine has come to the forefront in terms of relieving suffering physically, emotionally and spiritually for patients and their families, and even our colleagues in the hospital who are facing patients sick with COVID and with a variety of other illnesses that bring them to the ICU, often without ever having had a conversation about whether they want to be in the ICU and what extent of medical treatment they would want if they were living with a serious illness.”
“… But I think part of that means moving towards the difficulty of accepting that we are mortal beings. And actually our mortality is one of the beautiful and terrible things that unites us as human beings. It’s one of two experiences everybody will go through. And the more we try — in our family units, in our spiritual community, however you define community — to really reflect on that very fact, the more we become comfortable with it, I think the more easily we’re going to be able to discuss things because it’s been normalized. There’s nothing wrong with you for dying, as a mentor of mine has said to his patients.”
Liam Knox adapted this interview for the web.
From The Reading List
New York Times: “It’s Time to Talk About Death” — “Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.”
Los Angeles Times: “Op-Ed: The good that can come when we stop seeing cancer as a battle to win or lose” — “When Alex Trebek, the longtime ‘Jeopardy’ host, revealed to the world that he’d been diagnosed with Stage 4 pancreatic cancer this spring, his statement echoed the words of many patients I’ve treated.”
New York Times: “The Lesson of Impermanence” — “As a palliative care doctor, I spend much of my time face-to-face with pain and suffering, debilitating disease and death. When I began my training, I thought I was comfortable with the idea of mortality, and with the notion that fighting death at all costs wasn’t the sole purpose of medicine. But I hadn’t expected that the type of medicine I’d chosen to practice would require a strength and perspective that medical training hadn’t offered.”
The Atlantic: “What Medical School Doesn’t Teach About Death” — “To say that the practice of palliative care comes to vivid life in Sunita Puri’s pages may seem like a bad choice of words. But her memoir about tending to seriously, often incurably, sick people pulls off that feat. The driven daughter of Indian immigrants (her father is an engineer, her mother an anesthesiologist), she was in for a shock during her residency.”
Boston Globe: “In the midst of the coronavirus pandemic, we must have those serious illness conversations” — “The medical term is ‘serious illness conversation’: A patient with a chronic or life-shortening condition talks with their clinician about their understanding of their illness and prognosis as well as their hopes, fears, and values. The goal is for both parties to arrive at a shared understanding of patients’ priorities for living and how those priorities might change when they become more sick.”
The Mercury News: “The COVID-19 talk families need to have now” — “One of the haunting realities of the COVID-19 pandemic is that people are suffering and dying alone in intensive-care units. They might need ventilators or other machines to keep them alive, and they have no loved ones holding their hands, offering love and support and helping to convey their wishes to doctors.”
This article was originally published on WBUR.org.