Writing and wishing

Understanding patients' and families' perspectives plays a big part in successful end-of-life care.

It'd be difficult to practice hospital medicine without acquiring some life lessons and anecdotes along the way. But how do you share them? One critical care specialist recently found a better use than cocktail-party banter for her experiences.

Lauren Van Scoy, MD, is chief pulmonary and critical care fellow at Drexel University College of Medicine in Philadelphia and now the author of “Last Wish: Stories to Inspire a Peaceful Passing.”

Courtesy of Pitkow Associates and Lauren Van Scoy
Courtesy of Pitkow Associates and Lauren Van Scoy.

The non-fiction book, published this spring, tells the stories of four real intensive care patients who were treated by Dr. Van Scoy or a colleague of hers. Dr. Van Scoy interviewed patients, families and other clinicians to accurately report these end-of-life scenarios. ACP Hospitalist recently turned the tables, interviewing Dr. Van Scoy about her experiences, in practice and in publishing.

Q: What motivated you to focus the book on end-of-life decision making?

A: It came from my experiences talking to the families [of ICU patients] about who these people were. I was fascinated with the man under the machine, the person underneath all of this medical technology.

End-of-life issues were something I had never experienced before I was in medical school. I'm very lucky in that no one I'm very close with has ever been really sick or died. I was drawn to the patients that I was seeing in the ICU. I was really, really inspired by everything they were going through and I was sad because they weren't prepared for it. I was seeing the same drama over and over again every day. I wished everyone could see each other's experiences and learn from each other. Maybe the next person wouldn't have as much unprepared suffering.

Q: Who is the target audience for the book?

A: The heart behind my book was to reach laypeople, to reach patients and their families, and take each of these inspiring situations—some of them good and some of them bad—and turn them into a teachable moment. I never really intended it to be a memoir but I put a lot of myself, my thoughts into the book. It developed into something that young physicians, medical students, nurses can read. I think there's a huge audience of young physicians embarking on their careers and dealing with death and dying for the first time. The book outlines a lot of my growth as a physician, so hopefully others can relate to it.

Q: What has response to the book been?

A: It's been unanimously positive, which has been absolutely shocking. Some people are afraid of the topic, but then when they read the stories, they get compelled by the characters and the stories. I don't think it has anything to do with my writing. It has to do with the content. People are so drawn in by it, they want to know what's next. They ask me about the characters and the patients. A lot of them I'm still in touch with.

Q: How do you deal in practice with the issue your book raises—that many patients and families are unprepared for the difficult decisions of end-of-life care?

A: It's hard because most of what I do is in intensive care and I meet the patients when it's too late. In my outpatient pulmonary clinic, I really do try to set aside the time to have a discussion, not so much about advance directives [specifically], but getting patients to focus on what quality of life means to them. What are their hopes? I try to get to know what kind of people my patients are. “You have COPD. Your breathing is going to get worse. We're going to do everything we can to manage you, but….” I try to introduce the topic sooner rather than later.

When it comes to the intensive care unit and it's too late, I really just do my best to listen to the patients and families and understand where they're coming from and understand what sort of preparation, if any, they've had. If they haven't had any, then just start at square one and say, “We have to think about what kind of person Mom or Dad was. We have to think about what you hope to achieve. Obviously we hope that our loved one would get better, but in this situation, what can we expect?” We just lead discussions about goals of care and try to focus them on realistic outcomes and not harbor false expectations.

Q: Any advice for hospitalists on dealing with these situations?

A: As you start to see a patient getting sicker, even if you don't have a rapport with a patient, sometimes the most important thing you can do is just mention, “You need to start thinking about end-of-life preparation” or “You need to start thinking about what quality of life means to you.” That's the most important thing—making sure that doctors, whether they're hospitalists or internists, every single physician, has the responsibility to focus their patients on what quality of life means and then guide treatments and intervention according to what those goals and wishes are. I think that a lot of physicians don't think about asking what the word “quality” means to people until it's too late and you can't really ask anymore. Even if it's just getting the ball rolling, getting people thinking about it, you do a great service to patients. When the time does come, and they wind up in the ICU, it's not like they're hearing about it for the first time.

Q: How did you become a physician writer?

A: I was always interested in writing and creative writing, but when I went to medical school and residency, there wasn't time to do any of that. In my second year of residency, I was developing as a physician and growing. And there's a lot of stress and drama that you see in the hospital and a lot of trauma that you experience. I really didn't have a very good outlet and I decided to start writing about it, just in narrative fashion for self-reflection. But then I realized that this was turning into something that was also compelling and interesting and when I shared it with others, they were like, “Ooh, I want to read more.” That's where I came up with the idea to write about these hard situations in a way that was sort of narrative and also to have a learning point to teach people and also for self-reflection.

Q: Do you have any advice for other physicians interested in writing?

A: Go for it. The field of narrative medicine is so healing for me. Writing is something that I always wanted to do, but being a science/medicine person, had to put on the side. If you make the time for it—I did the whole thing in my free time—it's uncomfortable at first but I think it stimulates a lot of honesty and self-reflection. Even if you don't share your writing with anyone, you should still do reflective writing, because it makes you a better doctor, I think. To someone that wants to write a book, I say go for it. I had no concept how to write a book. It's a wave that you ride.