Dr. Zitter describe palliative care as “aggressive, high-skilled management of symptoms.”

A Highland Hospital palliative care specialist wants death to be a better experience for those who are dying.

Jessica Nutik Zitter, M.D., is an attending physician at Alameda Health System’s Highland Hospital in Oakland and specializes in palliative care. But to the world she’s known as an expert on the one thing that most people don’t want to think about: death. She’s written columns for The New York Times and other media centered on improving end-of-life care in the United States and how to keep patients informed about the process. She’s also the co-founder of Vital Decisions, an agency that provides phone-based counseling for near-death patients. She’s also currently working on a book about the experience of death and dying in America, based on her research and personal experience working in intensive care units.

Medical Guide: So what does it mean to have a good death?
Jessica Nutik Zitter: It means different things to different people; you can’t really generalize what a good death means, because it’s so personal. For one person, it might mean having their family nearby, and not being in pain. For another person, it might mean being able to be in their home, even if they’re not able to communicate or take care of themselves. There are so many different factors that will define a good death for each person.  It’s really easy to think that it’s an open and shut thing, like “good death versus bad death.” I don’t think it’s that simple at all. Most doctors that I know really care about their patients, and I think that it’s very complex to achieve a good death, because everyone’s so different. It requires a huge investment in time, intense discussion, and really digging in. It requires collaborative work, and expecting to wrestle with decisions. They’re never as simple or as easy as we wish they were. But you can have a huge impact on making death a better experience.

MG: How do you ultimately make that assessment to determine how to ensure someone’s highest quality of life when her or she is dying?
JNZ: I think it’s really important to go through some “what-if” scenarios, and hopefully you do it upstream, before someone’s actually close to death or unable to communicate. You want to do it when the actual patient can sit down and engage in the exercise. And those kinds of exercises are really hard to do.  The “what-if” scenarios are questions like, “What if you are completely alert and oriented, but unable to move? What would you want to do in terms of using life support?” Another scenario might be, “What if you were comfortable, and not suffering, but you had such a severe stroke that you were cognitively not intact?” It’s all about whether the patient wants to be on life support; whether he or she wants heroic measures to keep their body alive. That’s the ultimate question, in my mind. And you have to think about it in the context of all these different sorts of “what-if” scenarios.

MG:  How do you deal with cases where an elderly person might be ready to die, but his family might not be ready to let them go? Or more extreme cases, where there’s inconsistency among family members’ wishes?
JNZ: Those are such incredibly difficult and heartbreaking cases. I’d say it’s less common than having people in agreement, and we hear about those cases because they tend to generate a lot of public interest, and they’re tragic, really. At the end of life is when you’d hope families would have some peace and less conflict, and if there’s conflict going on about the most important part of a person’s life, those involved are going to have tremendous suffering and guilt. It’s a very sad thing. In terms of dealing with it, I’d say the most important thing is to have continued, open communication, and to really get at the question of who the patient is and what they really want.

MG: How do you broach the subject of death?
JNZ: It’s really hard, because a lot of the time, patients in the intensive care unit really don’t know that they’re dying. They might come very close to death and still not know they’re dying. There are many, many patients that I’ve taken care of who are struggling, and they know something is wrong, and they think, “Shoot, am I not trying hard enough?” But if you can sit down with them and bring that conversation to a difficult reality, but a reality nonetheless, that can be very helpful. It’s almost like jumping off a diving board—you have to take a deep breath and say the word “death” or “dying.” You use what we call “a warning shot,” by telling the patient or their family that you’re very concerned, and then bring in that reality of death and dying. Once it’s said, the reality-based work can really begin.

MG: Is there anything that doctors and caregivers can do differently during this situation?
JNZ: The people I work with, most doctors and nurses I’ve ever met, are all there to help. We take home a lot of pain, being witness to people suffering. And there are a few things we can do differently. One is to chase the elephant out of the room—to be able to say, “Hey, three out of three doctors involved with this case think that this is not a curable situation,” and really being honest.  The other thing is that, in order to do this very difficult work, I think we need to support each other and acknowledge the difficulty of it, to ask each other for opinions, and to confer a lot. Try and get consensus, as opposed to just trying to treat physiology. It’s all about communication, both with the patient and family, and with each other.

MG: Do you think that our collective fear of death as humans adds a layer of denial to the whole process?
JNZ: Well, we’ve done some amazing things with medicine, but I think that with that, we’ve oversold the capabilities of what we can actually do in terms of chasing or beating death. And we have to be careful, because everybody is going to die. It’s inevitable. So, despite our abilities with medicine—and we’ve done some incredible things—we also have to acknowledge the fact that people are going to die, and accept it, and treat it with the same kind of aggressive care that we treat other kinds of organ failure.  What I advocate for is patient-centered care. Whatever a well-informed person would choose for themselves, I completely support. There are people who want their bodies kept alive, no matter what the situation might be. If that’s what they want, I’m happy to use my tools to support that. But what’s interesting to me is that most people with serious illness, nearing the end of their life, don’t seem to want that.

MG: How have you been able to straddle that world of palliative care and also be in the intensive care unit?
JNZ: I feel that patient-centeredness is something that we can practice in any field of medicine. It should always be about the patient and what’s going to be of benefit to them. So for me, it makes perfect sense to have a combination of patient-centered approach in the ICU, because that’s one of the places where the most vulnerable patients are, and they need to have people looking at them holistically.

MG: What were your feelings when all the talk about death panels was going around?
JNZ: I obviously disagree with it. I think being patient-centered or having conversations with patients about their end-of-life choices is exactly the opposite of using a death panel, or playing God. It’s putting the decision back into the patient’s hands. Back in 2010, when the health-care reform debate was going on, there was a provision in the reform act that had space for paying physicians to have conversations about the end-of-life with their patients. And it was taken out because of the death panel talk. I think that does a tremendous disservice to the patient, because it causes them to lose control over their own health care.

MG: When you search for your name on the Internet, the word “death” shows up at the top of the list of associated word suggestions. How do you feel about having your name so closely associated with death?
JNZ: It’s so funny, because people always say to me, “Oh, you’re in palliative care, you write about death all the time—you must be so calm with it.” And the irony is, I don’t like death. I don’t like talking about it. I find it incredibly sad. When I think about my own death, I feel very sad, and I don’t really like my name being associated that way. I went into ICU medicine so I could conquer death. But I also feel like, based on the stuff I’ve seen in terms of bad deaths, and the high prevalence of it, I feel that there is a lot we can do to improve things. And I feel like I have to share my experience, so we can hopefully get things moving in a better direction.

This article appears in the October 2014 issue of Alameda Magazine
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