Conversations of Care

"In theory, I had all the training and knowledge I needed from my mom to say, 'No, she doesn't want that," Bowman says. He knew that the levels of CO2 circulating in her bloodstream were incompatible with life. She hadn’t signed a do not resuscitate (DNR) order, but Bowman had been with his mother throughout her cancer treatment. He had sat by her side in multiple EDs across New England. She had told him that she didn’t want to die on a machine. But when he was presented with a laundry list of all of his options and asked to make a choice, he was unable to find the words.

“In theory, I had all the training and all the knowledge I needed from my mom to say, ‘No, she doesn't want that,” Bowman says.

Bowman had years of experience “cracking ribs and shocking hearts” as an emergency medicine physician. In the ED, he also practiced as one of the few in-house palliative care providers. Bowman describes palliative care as “holistic support for people at any stage of a serious illness and their families.” This support starts with a calm, compassionate conversation to identify what’s important to a patient or their loved one at this critical stage of their life. From there, the provider can work together with the patient to make a plan to meet those goals.

There wasn’t anything his mother’s doctor could have said to change the devastating reality of the situation. He didn’t offer any options that Bowman himself hadn’t already considered. But in that moment, Bowman says, he didn’t need an ED consultation between two physicians about a patient. He needed a palliative care conversation between one ED physician and an overwhelmed caregiver.

What he needed, Bowman says now, was for someone to take the time to ask if he had talked to his mom yet about what she’d want. He wishes someone had told him “even if we intubate her, because she’s so weak from the cancer, there’s almost no chance that she would ever come off a breathing machine.” It would have been easier if someone had said “I’m so sorry, and I wish things were different. I think we should honor your mom’s wishes, and I don’t think we should subject her to that invasive, painful procedure.” Bowman needed his colleague to listen to him and make a recommendation to help take some of the burden of the decision off his shoulders.

This is where early involvement of palliative care in the ED helps. Joan Teno, a former hospice medical director and leading policy researcher on end-of-life care, says, “when you have a healthcare system that’s based on billing and churning through a number of patients, it’s much easier to stitch up a wound and get reimbursed than to sit down and have a family meeting for 45 minutes to discuss goals of care.” Having in-house palliative care providers like Bowman available to step away from the chaos and discuss what’s important to a patient is beneficial for both ED providers and patients, Teno says.

According to Bowman, palliative care isn’t trying to replace hospital admissions or life-saving interventions in the ED. The goal is to alleviate suffering for people like Bowman’s mother who feel like they’re drowning in the waiting room; to have these hard discussions and make a plan so they don’t end up in the ED the next time something happens. Or, if this is their final trip, to ensure that their wishes are understood and respected. Palliative care conversations in the ED help guide people to the dignified deaths they deserve.

After a brief pause, Bowman was able to collect himself and relay his mother’s wishes to the ED physician. The ED staff moved her out of the trauma hallway and kept her comfortable with minimally-invasive treatments long enough for a family member to fly in from out of state. Bowman’s mother died the next day. It was “the most peaceful ending possible,” says Bowman.

Those overwhelming seconds in which Bowman worried if he was killing his mother, he says, changed how he approaches conversations with his own patients. “I know nothing about plumbing or car mechanics, so if I have a problem in either realm, I’m looking for the repair person to tell me what I should do about it and make a recommendation. Why don’t we do that with healthcare and especially life and death decisions?” Bowman asks. It seems cruel to him to provide what he calls “the McDonald’s menu of life and death”: simply listing options before asking patients or caregivers to make these decisions alone. 

This is one of the lessons that Bowman carries into the ED from his experience as a palliative care provider. During discussions with his patients, he identifies and understands each person’s fears, goals, and concerns for their care. Then, he combines this information with his medical understanding of the available treatments to make a recommendation. “You can have that conversation in 30, 60 seconds,” says Bowman. He teaches this approach to other ED providers in the hopes that they’ll be able to apply it when he’s not on shift for his in-house palliative care role.

According to end-of-life researchers like Teno and Emma Belanger, palliative care conversations need to happen early, and they need to happen often. Belanger is a researcher at Brown University who studies how end-of-life care is delivered in different settings. “People with terminal diagnoses will show up in the emergency department and have not had these conversations,” Belanger says, “because nobody’s taking the time to do it, and I think that’s a failure of the system.” In-house palliative care providers are available to identify critically-ill patients in the ED who would benefit from a palliative care conversation, Bowman says. With a bit of training, other ED providers are able to have these conversations as well. 

Even with the “right” choices, end-of-life care is hard. 

Before placing Gargaro on hospice, Simpson had hoped to eventually move her back to the original assisted living facility. Her eyes welled up with tears while talking about how Gargaro’s 6-month checkup with her 15-year primary care physician had just been cancelled because Gargaro was on hospice. All of the drastic changes in her mother’s health had happened over the course of 5 months. 

Simpson is still coming to terms with what this stage of Gargaro’s life is going to look like. She misses her mom. “I wish you knew the old Jackie. Outgoing. Stylish. Perfectionist. It breaks my heart seeing her like this,” she says.  Despite these challenges, she’s grateful for the compassionate care she received from people like Dr. Yaghi or the ED providers who intervened to help her mother participate in the decision to go DNR/DNI while she still could.