Dallas Morning News photographer Sonya Hebert and reporter Lee Hancock spent the past year documenting death — how we experience it and how it changes the way we live — for a five-part series called “At the Edge of Life.” In their exploration of end-of-life medical care, Hebert and Hancock worked with Baylor University Medical Center’s palliative-care team and gained unprecedented access to clinicians, patients and families.
Hebert’s photos and video capture the stories of those they met — the granddaughter who just lost her grandma, the woman who can’t bear to leave her dying husband’s bedside, the girl who struggles with an eating disorder as she wonders whether her ill mother will survive.
To find out more about these stories and what she learned from capturing them, I interviewed Hebert, who won the ASNE Community Service Photojournalism award for her work on the project and was nominated as a 2009 Pulitzer finalist. Here is our edited exchange.
Kenny Irby: How did the “At the Edge Of Life” project originate, and how long have you done this kind of work?
Hebert: The concept of the project was born before I started working at the Morning News. Our project began with personal loss. Reporter Lee Hancock’s youngest brother spent five years in and out of ICUs before succumbing in 2005 to complications from a fungal infection. She saw how everyone around a hospital bed suffers when no one can talk openly about mortality.
Death is the last great taboo, a subject few volunteer to explore intimately. Our newsroom is no exception, as it routinely covers accidents, violence and freakish tragedies but rarely examines how death comes about for ordinary people. We felt compelled to look at our way of dying and how we might cover the subject better.
The Dallas Morning News is my first full-time job in journalism. And, this project is by far the most intensive and in-depth work I’ve done. I studied photojournalism at Ohio University from 2005-2007, during which time I worked on short-term projects.
How much time did you put into the coverage?
Hebert: I spent the bulk of a year working on this project. We negotiated with Baylor University Medical Center’s palliative care team to gain access and then spent months haggling with the hospital’s administrators and lawyers. The palliative team director gave up at one point, saying we couldn’t overcome legal obstacles and fears about having a reporter and photographer roaming Dallas’ largest hospital. We kept pushing and ultimately gained unfettered access.
We spent months attending Baylor palliative care team meetings and meeting with doctors, nurses, public relations staff and others individually to explain our goals and build trust. We had planned to be with the Baylor palliative care team over an intensive period. Before doing so, we needed to ensure that the team members were on board with the project and we had to allow them to become comfortable with their role in initiating patient interactions for us.
We spent months observing clinician visits with patients and families. In late May and early June, we shadowed the team at Baylor intensively for three weeks and met 38 patients who agreed to be a part of the project. I shot stills and video. After the three-week period, we continued until late September to document the stories of some of the patients who left the hospital and families who lost loved ones.
Video and print production began in August. With over 50 hours of video footage, just scrubbing the video took many weeks of long hours. The production of the four videos in total took four months.
How did the collaboration between you and your writing colleague evolve?
Hebert: Writers and photographers have different processes for storytelling. This can pose a challenge when both the writer and the photographer must accomplish their storytelling under restrictions. Balancing our individual needs was challenging. It was Lee’s intention to tell the story of end-of-life care at Baylor through the experiences and interactions of team members and patients. I found it more compelling to focus mostly on the patients. This posed a conflict, especially given the requirement to be accompanied by a public relations staff member at all times, which prohibited us from splitting up.
On a typical day rounding with the palliative care team, nurse Min Patel zipped from floor to floor, tracking down doctors, seeing patients, and putting out fires. It was vital for Lee to stick to Min and follow her every movement. On the other hand, there were times I needed to stay with the patients to build rapport and shoot freely. As the embed period progressed, we both learned how to accomplish what we needed while helping the other to do the same.
How did you interact with your online staff? Was the Web presentation very different from the newspaper’s presentation?
Hebert: I had minimal contact with the online staff who produced the main page. The project coordinator, photo editor Chris Wilkins, conferred with the online department.
Were the goals different for online presentation from the print edition?
Hebert: The print presentation was a five-day series, including over 40 photos, that took readers on a journey into Baylor hospital rooms where palliative care practitioners helped dying patients and grieving families with the painful choices of life and death. It looked at the human side of medical care and the role of technology in an era when dying patients can be kept alive for months, even years, but never cured.
The goal of the online presentation was to expand on the print presentation through videos and additional resources for readers. “Patients at the Edge” is a compilation of vignettes of dying patients and their loved ones that brings viewers into the universal experience of dying. The video about Penni Bourque gave viewers an intimate look at how palliative care can help people live fully until death. Judy Jackson’s video examined how difficult it can be to let go of loved ones and come to terms with loss. “The Palliative Mission” offered explanation and understanding about what palliative care is and how it helps dying patients and families.
Join Poynter Visual Journalism faculty member Kenny Irby, and ASNE winner Sonya Hebert Monday, April 27, at 1 p.m. for a live chat on telling stories about death with dignity. The interview continues below the chat box.
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The end of life period is a very difficult subject to explore in the American culture. How did your focus come about?
Hebert: Initially, the project’s focus was far-reaching and included three areas of end-of-life care: the Baylor model, an established team of doctors, nurses and practitioners; an out-patient palliative care clinic at the county hospital, Parkland Hospital; and a look at pediatric palliative care in the region as well. We chose to tackle Baylor first because we had made great headway in access, and Baylor had a well-established program.
After spending some time with the Baylor palliative care team members, I knew I could best tell the story of palliative care through the stories of individual dying patients. I wanted to show what dying is like, what people go through in this time of life that we will all face. Their stories became my focus.
While we were preparing to embed with the team, we were pursuing the other story leads as well. A pediatric hospice care nurse introduced us to a couple preparing to have a baby who was not expected to live long outside of his mother’s womb. After meeting the soon-to-be parents … I chose to document their son’s journey from life to death as part of the pediatric portion of the project. Later in the year, after extensively reporting at Baylor, we decided to hold the pediatric story, quickly understanding that our initial scope was far too large.
In addition to doing a piece on the dying experience featuring multiple patients, I wanted to go deeper and document one or two individuals’ journeys at the end. When I met Penni Bourque and Judy Jackson, I decided to focus on their stories. A fourth video would explain what palliative care is doing to help dying patients and families.
What were some of the challenges you faced? How did you overcome them? In particular, how did you overcome the technical lighting challenges?
Hebert: Working in a hospital is challenging. Despite the fact that we spent a lot of time with the palliative care team, there was really no way to help the rest of the Baylor staff to become comfortable with our presence. The team makes rounds throughout the entire hospital, a 1,002-bed hospital. Multiple doctors see each patient. A lot of staff got used to seeing us, but were still very protective of the space, especially in ICUs.
There were many hours spent simply standing out of the way trying not to push our luck. I was not allowed to shoot unless I had written consent from all individuals in the photos/video, which was difficult when following members of the team as they rush from one floor to the next, one patient to the next. Shooting the doctors and nurses while working was a challenge, even with the assistance of PR. Some didn’t want to be a part of the project. This required constant explanation.
Juggling video and stills was more difficult than I had anticipated. Not knowing what we’d be doing each day, I had to bring both with me and make split second decisions about what tool to use. As anyone who has shot video will say, shooting too much is your worst nightmare. However not knowing which patients would be in our final project or whether they would be alive the next time we saw them, I tried to shoot as if I would never see these individuals again. I ended up with over 50 hours of footage.
As I mentioned earlier, the writer and I had very different needs to accomplish our storytelling. Meeting our needs together was a challenge given the restraints of the public relations team. Already extending themselves by accompanying us all day, every day for three weeks, and many times late into the night, they were not able to commit two staff members to the project.
Lee and I had to stick together, and often our needs would diverge. This required compromise and sometimes not getting the picture. Not being able to spend as much time as I needed with patients was difficult.
We relied on the palliative care team to gain access to patients. As we followed them on rounds, we would wait outside a patient’s room while the team member requested on our behalf their participation. There were days we saw no patients at all. Some of the patients who were most interesting to us were off limits due to ethics consultations, i.e., familial disagreement over care decisions. This required a lot of faith in the process.
Meeting patients and families and building rapport as they are coming to terms with the idea of death was difficult. We observed nurse Min Patel’s first consultation with cancer patient Beverly Freeman on June 2. Beverly had difficulty breathing. Her son and best friend were by her side and were caught off guard by the change in her condition. We spent a few minutes talking to Beverly and left feeling she could be a major part of our project. I took a handful of photos of Beverly during her interaction with nurse Min Patel.
The next morning we learned that Beverly passed away earlier that morning. As a photographer and videographer, it’s difficult to recreate what has already happened. She could no longer be a major part of my storytelling. We were not there for her death. Her family in disbelief began to assemble at the hospital. Min Patel went into overdrive to comfort them. We had not met most of them. This was a very delicate situation. I didn’t know how to approach Beverly’s family as they learned that the worst had happened. Journalists do this work every day. But we don’t do it in ICU waiting rooms with everyday folks.
Trying to explain to them our project and Beverly’s participation the night before seemed inconsequential … but at the same time a huge part of the story. Lee was able to capture the details of Beverly’s death and the aftermath through medical records, interviews and observations. I was not able to. The family gave consent to be photographed but it still never felt right.
Technically, I tried to shoot with a shallow depth of field to clean up backgrounds in the hospital. I also tried to remember visual variety. One of the greatest challenges was shooting the same visual situation repeatedly — a patient in a bed. I tried to shoot the patients’ feelings of dying, rather than the literal experience.
Photographic essay projects of this depth are not commonplace in newspapers these days. What value do you think they have?
Hebert: Death is something that will affect all of us profoundly. Exploring the dying experience addressed a great taboo in our culture. The project helped to facilitate a conversation in our communities and with our loved ones. The value of this kind of work lies in its potential to touch people. It hopefully gets them feeling and thinking.
Sometimes the value of what we do is a matter of impacting those we document. One woman whose mother died after an unsuccessful “code-blue” resuscitation later thanked us for treating her loved one’s last moments “as precious.” Another wrote that our interactions with her husband helped “give his life meaning” in his last six months.
Readers responded as well. They thanked us for “courageous,” “powerful” and even “monumental” work. One called the series “compassionate, informative and thought provoking … on a topic that is really hush-hush.”
Medical professionals also praised the work. National palliative care organizations recommended the series to their members as a powerful educational tool. A nursing and bioethics professor at Johns Hopkins University called it “incredible.” The head of an Indianapolis hospital’s palliative team said the series was “excellent … insightful and heartfelt.”
Stanford University Hospital’s palliative program manager wrote that her team wanted to use it as a training tool. A local professor of law and medical ethics wrote that we brought readers and viewers “as close as most of us will get to the true in-hospital experience until it happens to one of us or someone we love.”
How do you go about gaining access and building relationships with the people you document?
Hebert: Typically, I gain access and build relationships by spending time with people. I try to be very open about my intentions, how I plan to tell their story and why. I use every tool I can to build rapport — verbal language, body language and time. In this situation, we were dependent on first, the palliative care team and second, the public relations staff to secure access to patients, many of whom didn’t agree to participate.
If ideas are the currency of the newsroom and photojournalists are equal to reporters in the news gathering process, how did that attitude manifest itself during this project?
Hebert: Lee and I recognized that we could tell the story of death and dying in different but complementary ways using our mediums, aiming to provide readers with a well-rounded, comprehensive experience. All forms of our storytelling offered readers an intimate look at the dying experience and what palliative care is doing to help patients and families.
So why black and white? It is clear that many hard-hitting photographic projects are presented in black and white, when in fact they were documented in color and the world that we live in is color.
Hebert: We chose to change the images in print to black and white to avoid distractions of mixed lighting in the hospital setting and maintain consistency throughout the series. We contemplated using color on day five to emphasize the dominant concept of Penni’s story — living fully until you die. Most of the photos used on day five were outside of the hospital setting. We thought this made it different enough to change to color. However, in the end, we weren’t able to use color due to press issues.
Why are chapters four and five documented in color in the Web presentation?
Hebert: Like the print version, “Patients at the Edge” and “The Palliative Mission” were changed to black and white to maintain consistency and avoid distractions of mixed lighting in the hospital setting. I thought that readers could get to the content faster if not disrupted by the color changes.
We chose to use color for Penni’s and Judy’s videos to emphasize their difference from the other stories in that they were intimate looks into individual’s lives as they deal with death in and out of the hospital. Because Penni was such an inspiring story of living fully, we felt color was more appropriate than black and white. But keeping only one of the four stories in color seemed odd. Thus, we chose to keep the two videos about individuals in color, while the other two were changed to black and white.
Tell me about the editing and selection process that you followed. How many images did you choose from?
Hebert: I shot nearly 6,000 images for the project. After each shoot, the stills project editor, Brad Loper, and I reviewed each image and did a rough edit. It was difficult to finalize our edit for the print presentation until an outline of the written narrative had been finalized. Once we knew what characters were being presented on which days, we were able to select the best images that helped to move the print narrative along as well.
Video editor Ahna Hubnik, photo editor Brad Loper and I selected the stills for the videos. Editing for video was mostly on a scene-by-scene basis. Once the audio was nearly finalized for each video, we chose the visuals, picking from both the b-roll video and stills to help move the story along.
Who was included in your editing process and what role, if any, did a picture editor play?
Hebert: Brad Loper worked as the primary photo editor on the project and worked to select photos for the online presentation as well as the print presentation. Director of Photography Leslie White and Assistant Director of Photography Chris Wilkins weighed in on the final edit.
What are the more memorable lessons you learned during this assignment?
Hebert: Have patience and trust in the process. There were a lot of unknowns in this project. Would we get the access we needed? Would patients want be a part of the project or would we spend all of our time sitting in the hallways of the hospital? Which patients would be our primary characters? Who should we spend our time with? Who’s going to die before we have a chance to document their story? These were scary questions but in the end it all worked out. I think trusting the process and yourself is vital to one’s sanity while working on this kind of project.
If you don’t get everything you think you need, that’s OK. When shooting both video and stills, you will miss things. In this case, I opted to bring both with me each day because I never knew what would be happening each day. It worked out but was overwhelming nonetheless to constantly think in terms of both video and stills.
Edit video as well as stills as you go as much as possible. This would’ve helped me refine my video shooting techniques and made the editing process smoother. This would’ve helped me be more selective in shooting video.
Don’t underestimate the emotional impact the story may have on you and take care of yourself.
Communicate your needs to the gatekeepers and writers beforehand. Make sure they understand your needs so there are few complications and misunderstandings while shooting.
Were there any major surprises for you while developing this project?
Hebert: The project impacted me personally and spiritually in ways I didn’t expect. In retrospect, I don’t know how you can contemplate death for a year and not be impacted in these ways. Pondering death and our impermanence is not an easy thing to do, but it is worthwhile. It allows one to appreciate life and live it fully. Penni was an inspiration in this way. I hope I can continue to take the hard lessons I learned and apply them in my life and relationships.
What outcome did you desire and/or expect when this project began?
Hebert: When the project began, the scope was so large that my main goal was to narrow my focus and find individuals who would share their stories and teach us something about the dying experience. It was my hope to find multiple patients who in total would illustrate the comprehensive human experience of dying.
What advice can you offer other photographers when it comes to being a visual reporter in such sensitive settings?
Hebert: Be mindful of the impact your presence will have on those you photograph. I traveled with Penni and her family to two states and spent countless hours and some nights with them at their home. Doing this kind of work, we become very close to the people we document. It’s impossible not to. Michelle, age 8, began to look to me as a mother figure as she tried to negotiate in her mind the changes happening to Penni. I think it’s important to remind yourself and the people you photograph of your role as documentarian.