Honoring Values for Patients With Serious Illness

It might be tempting to think that by the time a patient sees a palliative medicine specialist, some other clinician has given the patient the toughest news they’re likely to hear. But in fact, palliative care experts perform a critical service by working through hard-to-hear information with their patients.

“Sharing difficult news, responding to people’s reactions around difficult news, and helping people navigate difficult news is what we do,” says Laura Shoemaker, DO, a palliative medicine specialist. “That’s one of our primary purposes in palliative care.”

As a member of a team of more than 30 physicians who specialize in palliative care at Cleveland Clinic, Dr. Shoemaker helps patients with a variety of serious illnesses, including cancer, heart failure and neurodegenerative disorders. She is one of five specialists we interviewed for a series on how doctors deliver difficult news.

Unlike hospice care, which focuses on patients nearing the end of life, palliative medicine provides patients and their families with relief from the physical, mental and emotional stress at any stage of a serious illness. Care may be delivered concurrently with treatments aimed at curing disease and/or prolonging life with the disease.

“We are consulted for different reasons,” Dr. Shoemaker says. “Sometimes, it’s to help with symptoms related to living with or treating serious illness. People experience a lot of pain, profound fatigue, shortness of breath, difficulty sleeping, mood disturbance and other things. And sometimes patients’ symptoms are related to the therapies they receive to treat the disease. Either way, we’re there to help optimize comfort and quality of life during their journey with serious illness.”

Equally important, she says, is helping people navigate decisions around serious illness.

“We try to align what’s medically available and appropriate with what’s most important to the patient,” says Dr. Shoemaker. “About two-thirds of our consultations are to facilitate what we call a ‘serious illness’ conversation. In those conversations, navigating bad news, and oftentimes talking about serious illnesses that are getting worse, is the core of our work.”

Cleveland Clinic established the first acute palliative care unit and physician fellowship training in the United States; Dr. Shoemaker completed her fellowship in 2009. During that training, she realized that discussions of life-threatening diagnoses would be among her responsibilities as a palliative medicine specialist.

For example, she recently saw a patient she has been helping for several months with regard to pain associated with cancer and related treatments. New imaging revealed that the cancer had returned and was now in an advanced stage. Dr. Shoemaker was the first physician the patient had seen since the scan was complete, so in addition to addressing pain in collaboration with the patient’s oncologist, Dr. Shoemaker shared details about the advancement of the disease.

“We talked about this very difficult news of the recurrence, and how the patient was feeling about it – what their thoughts were about engaging the broader medical team to explore the benefits and burdens of additional cancer-directed therapy,” she says.

These conversations come up in the context of inpatient treatment for heart failure as well.

“I can’t tell you how many times I’ve met patients in an intensive care unit who have had advanced heart failure for years,” she says. “One of the first things I might ask is, ‘You’ve been in the hospital three times this year for your heart failure, and you’re in the ICU right now. Where would you say your heart failure is: early, middle or advanced stage?’ Nine times out of 10 people say, ‘Somewhere in the middle.’”

But the question must always be asked, because even when patients have heard tough details about their condition, they may not have completely absorbed them.

“A clinician has probably disclosed something they thought the patient interpreted as ‘You have advanced, end-stage, irreversible heart failure with a likely prognosis of months, not years.’ But the person sitting in that bed may not have internalized that or understood the information,” says Dr. Shoemaker.

Pillars of the conversation

In her experience, Dr. Shoemaker has found that difficult patient conversations require clinicians to invest themselves in three specific ways.

• Be intentional. “When you’re going to be discussing heavy news, you need to do so in whatever way helps the patient receive the information, to the extent that’s possible,” she says. “Some people don’t take in information alone. Ask if they want a spouse or family member with them. Set it up so that you’re starting in a place where people can receive the needed information.”
• Listen more than you talk. “Start by asking people what they know. Ask what they’ve been told and what their understanding of that is,” she says. “Find out what’s most important to them. So ask first, and then you can start telling information.”
• Bring empathy. “We need to be ready for emotion and be able to respond appropriately,” she says. “There’s a tendency to say, ‘Here’s the news. What questions do you have?’ The questions are important, and we need to answer those, but there’s emotion there that we need to attend to with empathy.”

When the need for difficult conversations arises, Dr. Shoemaker says she tries to remember her role. “If my job is to keep the world cancer-free, then I fail,” she says. “But if my role is to partner with this patient, to hold space for whatever emotion comes up and to respond in a compassionate way, that I can do.”

What success looks like in difficult conversations

Likewise, although it can be difficult for physicians to judge whether they’ve handled difficult conversations well, Dr. Shoemaker considers her own sense of presence.

“Did I give that patient all my attention? Did I listen attentively? If I’m distracted, looking at the computer or looking at my pages or thinking about the next patient, then no, I didn’t do my best,” she says.

Success also is measured by the patient experience. “Something I’ll often tell people is, ‘I’m on your team now. You’re not alone in this. I hear that this is really hard, and you don’t know what the future holds. I’m in this with you. We’re going to do this together,’” says Dr. Shoemaker. “Success is the patient walking out with the knowledge that someone is going to help support them for the best possible outcome in the worst possible situation.”