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“I’m sorry, but there’s nothing more we can do.”
You’ve seen it in countless movies and TV shows. At an incredibly dramatic, heartbreaking part of the story, a doctor comes in to tell a character they don’t have any other options for treatment, essentially letting them know they need to prepare to die. In real life, it’s a far more complicated conversation – in fact, it’s likely a series of conversations – that doctors around the world have every day. It’s one of the hardest talks a doctor has with a patient. But in some ways, it’s actually getting even harder, and it’s forcing doctors to train differently than they have in the past to hone this particular skill.
Let’s start with the obvious: When a doctor tells a patient there are no realistic paths for curative treatment, the doctor needs to be confident about that. Yet with so many experimental therapies, promising new drugs, and clinical trials offering hope to even the sickest of patients, how can any doctor, even the best doctor, be sure?
Take cancer for example: The world of cancer treatment is going through a reasonably optimistic stretch these days, and thanks to the internet, patients can be just as aware of that as doctors. A new class of drugs called checkpoint inhibitors is showing promise for multiple types of cancer. Innovative research is helping doctors understand the specific mutations that make certain cancers so dangerous, leading to personalized treatments based on the genetic makeup of each tumor. And exciting new approaches like CAR T cell therapy, recently approved by the U.S. Food and Drug Administration, are ushering in a new era of personalized cellular therapies. These are all great developments, but they’re not cures. Not everyone will respond to them. Yet by their very existence, they’ve changed the conversation when it comes to patients hoping for any chance to fight off their disease.
“These conversations used to happen very early on, because we knew certain tumor types unfortunately had no active treatment options,” said Tara C. Gangadhar, MD, an assistant professor of Hematology Oncology. “But now the first conversations with many of our patients are so much more hopeful.”
The growing and ever-changing number of possibilities means it’s harder for doctors and patients alike to be certain that they’ve truly exhausted all viable options. And it’s forcing doctors to reexamine their approach when it comes to having these conversations with patients and setting realistic expectations and goals for treatment.
“That challenge is good because it means science is moving the needle. I want that challenge,” said Anjana Ranganathan, MD, an assistant professor of Hematology Oncology who is board certified in Hospice and Palliative Medicine.
But this hope is also a double-edged sword, and not just because of the limited response rate some of these treatments can have. Pharmaceutical commercials hype new drugs. News stories can overstate the effect of a breakthrough, making it seem like a treatment will help more people than it actually will. The internet has also changed the game, since patients have the opportunity to Google their own conditions or symptoms and come up with more information than they could ever possibly take in, even if it may lead them down the wrong path (think about the times you’ve looked up your symptoms only to find yourself down a rabbit hole of anxiety over the possibilities). All of this means that patients may come to their doctor with false hope or misinformation, which only makes the physician’s job more difficult. The problem only gets worse if patients try one of these treatments and it doesn’t work.
“It makes it harder for all of us to accept when treatments don’t work,” Gangadhar said. “We all see that some patients are getting a benefit from a treatment, and we wonder why it’s not working the way we wanted it to this time.”
But even before they try a new therapy or attempt to get into a clinical trial, Ranganathan says it can be harder for patients to understand the benefits and weigh the risks of their decision.
“More treatments mean people are living longer, but there are more burdens that go along with that,” Ranganathan said, adding that prolonging life with experimental treatments can lead to significant gains, but it can also result in more pain, more nausea, or loss of appetite, among other complications, making it critical that doctors to communicate the benefits and the risks to patients.
“Yes, there are therapies are out there, but let’s talk through how you are feeling now and how we are hoping you will feel with other treatments,” Ranganathan said of the way she approaches these conversations with patients. “We can try to give patients more time, but we have to discuss what the potential tradeoffs might be. There’s a difference between quality of life and quantity of life, and talking about it with patients and their families can get at the heart of what people want.”
That particular approach to this complicated question is at the core of a new round of training throughout the field of medicine. Penn has an ongoing partnership with Ariadne Labs, a healthcare innovation company, and the Dana Farber Cancer Institute to help train more clinicians in best practices for conversations about end of life care.
“It’s a learned skill, just like putting in a central line or doing a bone marrow biopsy,” Ranganathan said. “It takes practice, and you can hone it over time.”
Ranganathan says one of the key concepts of current training is to focus conversations with patients on what they want out of the time they have left instead of talking about the amount of time itself.
“If you just have open conversations, not necessarily about life and death, but about goals and strengths and abilities, you see patients are very appreciative of the chance to talk about the things that are so important to them,” Ranganathan said. “It’s when you don’t talk about them that they are left with the anxieties of ‘the elephant in the room.’”
“’Teach me about what’s important to you, and we’ll talk about options together.’ I’ve had patients get up and hug me at the end of emotionally difficult conversations because they’ve been thinking about all of these things. They feel better talking about these things openly than worrying about them on their own.”
Both doctors also agreed that the timing of these talks is crucial, and that it’s important to prepare patients for all possible outcomes.
“There are times when it’s most helpful to focus on quality of life care, and we talk about quality of life and comfort care early on with patients, not only when other treatments aren’t working,” Gangadhar said.
Ranganathan also says these conversations empower patients at a time when they need it most.
“It’s about checking in with patients on where they are and understanding from the outset what their focus is,” she said. “In the end, patients will guide you to what is important to them.”