Dying Well: The Unexpected Rewards of Palliative Care

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altAt the 2012 ACEP Scientific Assembly, EPM executive editor Mark Plaster sat down for a live interview with Mark Rosenberg to talk about why palliative care is the most rewarding new frontier for emergency physicians.

At the 2012 ACEP Scientific Assembly, EPM executive editor Mark Plaster sat down for a live interview with Mark Rosenberg to talk about why palliative care is the most rewarding new frontier for emergency physicians.


EPM:  I’m here with Dr. Mark Rosenberg from Paterson, New Jersey. You’re the director of the emergency service, but also more importantly, the chief of the palliative care service there.

Mark Rosenberg:  That’s right.

EPM: That strikes me as sort of the opposite of emergency care. Tell me about your interest in palliative care.


Rosenberg:  It’s interesting. [In the ED] we see palliative patients every day. We just don’t think about it. Let me just give you some statistics. If you survey people, 100% of individuals want to die at home. They don’t want to die in a health care facility. And yet, amazingly, 70% of patients die in health care facilities. What’s even more amazing is almost every one of those comes through the emergency department. We get to see them. If we have a good understanding of palliative medicine, we would be able to manage people’s symptoms well enough that maybe they don’t have to be admitted. That’s the crux of palliative care in the emergency department.

EPM:  You were sharing before the interview about your experience with the residents and their discomfort with dealing with the dying patient.

Rosenberg: Well, you know, it’s contrary to everything that we’ve done in emergency medicine. Let me tell you a story. There was a house fire in Paterson, New Jersey, after which about six people came in to the emergency department critically injured. We got all the residents and all available staff to help manage these cases. Then I stepped back and I watched. I realized that my residents treated everybody as a disease, as a chest tube, as a procedure, as a diagnosis. They weren’t treating them as people. We do that in emergency medicine because that’s how we survive from shift to shift. That’s how we make it work. Palliative’s different. In palliative care you have to treat the patient as a person. It’s different than what we’ve learned. That’s why it’s hard for emergency physicians to grasp what palliative care is. It’s a different mindset. It’s sometimes harder. It’s more painful. And it’s not for every emergency physician.

EPM:  But we all treat dying patients.


Rosenberg:  We do. But let’s back up to before they’re dying. When somebody comes in with cancer – let’s say they have a glioblastoma – the initial phase of our management is really based on curative treatment. Palliative care, on the other hand, is non-curative symptom management. This means that with the person with the brain tumor, we not only treat their tumor but we treat their symptoms. We treat their nausea, their pain, their vomiting, their diarrhea, whatever it may be. That’s palliative care. As the person goes along their continuum, as they go from presentation of their illness to terminally ill, what happens is we start doing less curative measures and more palliative or non-curative measures.

EPM:  It seems to me that many patients come to us for treatment of their symptoms rather than diagnosis or definitive treatment of their disease. They want to feel better. And end-of-life care or terminal care is really just an extension of that.

Rosenberg:  That’s exactly right. Let me tell you why. As you go across the disease continuum from presentation that’s mainly curative, you get to a point where it’s all palliative management. That’s when we’re doing end-of-life care. And any curative treatment that’s being done in that phase would be considered futile by many. So, it’s a very interesting continuum from presentation through curative, non-curative symptom management and then move to end-of-life. And we do it every day

EPM:  There’s been a lot of talk about end-of-life care in the recent Affordable Care Act, particularly as it pertains to cost. We can argue about the exact numbers, but we all know that the average American will spend 60% or more of their entire lifetime expenditure on healthcare in the last two years of their life. I’d like for you to address where palliative care informs our actions, how the economics work, and how it’s going to change our perspective on ‘futile medical care.’ 

Rosenberg:  When somebody presents to the emergency department at the end of life, where we believe that that admission may be their last admission, we’re not 100% certain. And frequently we would admit to the critical care unit. We would admit to telemetry. We would admit to the hospital. But with an understanding of palliative medicine and end-of-life care, the most appropriate place for these patients is possibly not in critical care, but on the regular hospital floor. Or possibly not even in the hospital, but in hospice. And possibly not in-hospital hospice, but at-home hospice. In the hospital I’m affiliated with, administration came to me a couple weeks ago and said that we are saving $6.4 million every six months in our palliative medicine. Huge, huge dollars.

EPM:  And what about patient satisfaction? Do you find that the patients are happier with what you’re doing? Because a lot of physicians will say, “If I’m not doing everything, I’m exposing myself to risk. I’m telling people they can’t be admitted to the hospital.” How many times have we heard people say that?

Rosenberg:  I’ve been doing emergency medicine for a while. Somebody comes in and they have heart failure – we do a full resuscitation and get them better. They go to the intensive care unit. And if anybody says anything good about what was done during that hospitalization, they’ll send the thank you to the critical care team. You’ll never hear it in the emergency department. But let me tell you about palliative care. I have more letters of thanks from patients and family members in the two years that I’ve been doing palliative medicine than in the 30 years I’ve practiced emergency medicine. I get letters every day from our patients, communicating how much they appreciate what we do. It’s the most rewarding thing I’ve ever done.

EPM:  So you’re saying that not only are you not exposing yourself to risk, you’re actually doing exactly what most patients are really wanting you to do.

Rosenberg:  Exactly right. I am understanding their goals. And I am helping them reach their goals. Here’s a story. A 38-year-old woman who lives near the hospital has a glioblastoma. She’s known well, she’s diagnosed, she’s dying. Unfortunately, she has seizures. She continues to have these seizures. She comes into the hospital and she’s somewhat refractory. She’s in hospice care at home, so I see her in the emergency department as part of the hospice team. I manage her seizures and I give her family rescue medication so that she can go home from the emergency department instead of being admitted. The family knows exactly how to treat her. If that fails, then they know to bring her back in. But the point here is every time I send her home – this has happened six times now over a period of about four months – every time she goes home she sends me a letter saying

EPM:  Mark, I have to admit that I think one of the hardest things that ACEP’s palliative care section is going to face in emergency medicine is in the psyche, the heart of emergency physicians. There’s a fundamental reason why we went into emergency medicine – a lot of us did it because we want to be heroes. We want to save the patient. And the last thing we want to do is to work with a dying patient. We consider that almost a failure. So how is it that you’re going to change the mentality of emergency physicians?

Rosenberg:  I think it’s a whole new education: How do you manage somebody who’s dying? How do you manage the symptoms? We see people dying all the time, and our response is, “Let me do a procedure to stop that.” Let me give you an example. A patient comes into the emergency department and they’re short of breath, they’re really having a hard time breathing. And you decide you really want to intubate them right away. But the patient says, “Absolutely not. I don’t want to be intubated. I have Stage 4 lung cancer. I’m willing to die. Keep me comfortable.” Now, as an emergency physician, we need that toolkit. We need to know how to keep him comfortable. This man is best treated by morphine or any type of opiate. And we need to be able to manage it. So, yes, the education is different. And yes, we have to treat the patient as a person. When we see a cardiology patient, we want to be the cardiologist – the physician who takes care of the emergency cardiology piece. Why don’t we want to be the physician who takes care of the dying patient. But it is an essential part of our job.

EPM:  I think it’s because we are looking at different end points. I went into emergency medicine to, in my mind, fix somebody. If they come in with a pneumothorax, I put a chest tube into them and I have fixed their pneumothorax. But with a palliative care patient, I’m afraid that I haven’t fixed their problem by giving them symptomatic care. And what you’re saying is we really need to change that paradigm. What they really want from us is different from what we think that they are needing to have. I guess I’m trying to say that if I can’t fix your cancer, I feel as though there’s nothing I can do for you. But there is.

Rosenberg:  There is. And that’s where we need to become experts. We need to be able to manage their symptoms better than anybody else on the planet. That has to be what we own. We also have to remember that to put in the chest tube, that’s kind of our goal of care. We want to reverse that pneumothorax. When we deal with palliative care, we switch from your goal to the patient’s goal of care. Let me just tell you about how we look at palliative care across all different ethnic backgrounds. There is one common thread. Everybody wants to be comfortable. Whether you go to heaven, whether there’s life after death doesn’t matter. We all are human. We want love. We want compassion. We want comfort. We can do that in the emergency department. And we see these patients every day. Let’s get that skill set. And another thing is it doesn’t have to be every emergency physician. Some of my colleagues won’t be able to do this. But there’s some that do it extremely well.

EPM:  They won’t be able to do it because you feel that they’re just psychologically incapable?

Rosenberg:  I think in a way they’re somewhat protective of their own feelings. It’s very important that when you take care of a palliative patient, you treat the patient as a person. Some emergency physicians can’t do that because they’re protecting themselves from the emotional need that palliative medicine requires. It’s not an easy job to do well. If somebody comes in and they’re stage 4 lung cancer, what’s the first thing you say to them? If you go to them and you just ask: “What do you think’s going on?” You’d be surprised how easy your conversation becomes. Most people say, “I think I’m dying from my cancer.” Then your next question is simple: “Well, what’s your goal?” Their goal is not going to be that they want to sky dive. Their goals are generally going to be simple and tangible, like spend Christmas at home with their family. They want to watch the next Cleveland Cavaliers’ game. This is where I think the shift has to be made in the emergency medicine mindset. And if we can make that, it is the most rewarding practice you can imagine. I was talking to some residents and they were asking me why should they join the ACEP palliative care section. Why should they join palliative medicine? Well, with all the talk of burnout, one way to extend your career is to expand your interests in different parts of emergency medicine. Going into palliative medicine and some of the other subspecialties in emergency medicine actually expands your career and prevents burnout. So if nothing else, palliative medicine may help us more than it helps our patients – or at least with my job.

EPM:  Well, tell me a little bit about being the head of the ACEP Palliative Care section. That’s a new section is it not?

Rosenberg:  Brand new.

EPM:  A brand new section and a brand new emphasis in emergency care – getting emergency doctors to really look at the core of their practice very differently.

Rosenberg:  A lot of people are confused about it, but the goal of the section is to put together a toolkit, working guidelines for emergency physicians for dealing with end-of-life and all palliative issues that come into the emergency department, including palliative emergencies. It’s going to be an exciting section, very busy. And hopefully we’ll be able to do some good work for ACEP’s board, who is asking us to put together a White Paper.

EPM:  The new emphasis in emergency medicine is geriatric care. And obviously geriatric care is eventually the end-of-life.

Rosenberg:  Absolutely.

EPM:  And it seems as though all of our geriatric patients will eventually be in the end-of-life cohort.

Rosenberg:  You’re right. There’s only four ways that you can die. You’re either going to die from a sudden death – and that’s only six percent of the population. Or you’re going to die from organ failure – that’s 33 percent of the population. Terminal illness – that’s another 33 percent of the population. And then dementia or frailty. Those last three are all palliative care issues. So, the odds are that all of us are going to need palliative care. And all three of those diagnoses are diseases of the elderly. So as we watch the aging population, all will require palliative initiatives that we can do well in the emergency department; all except that six percent where you have sudden death.

EPM:   An issue that’s currently in discussion in all of our healthcare legislation has to do with trying to get people out of the emergency room and into primary care. But you and I both know that after 5 pm, we become the medical home for the vast majority of the population. So it seems to me that you’re absolutely right that emergency physicians – like it or not – need to be involved in this particular type of practice. You need to start thinking more about palliative care. And doing it well.

Rosenberg:  And I think we as a specialty can own this. I think it’s efficient. We already said that all those patients with palliative emergencies and palliative care issues to come to the emergency department. We touch every single one of them. Let’s do it the right way.

1 Comment

  1. Cynthia Soghikian Wolfe MD on

    I was an ED doc for 25 years and now am a Family Physician, who also helps with Compassionate Choice for those in WA state who want it. I agree with everything discussed in the interview and want to add that Compassionate Choice, in the two states of WA and OR where it is legal, can actually be an important part of Palliative Care – just having the choice available has given many dying people a sense of relief and of some personal control. Whether or not they use the choice,they and their loved ones have been tremendously appreciative.

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