Beyond Words

Session: How do I talk about hospice as an option before it’s the only option?

Speaker: Diana P. English, MD, obstetrician/gynecologist, University of South Florida, Tampa, FL

Multiple, brief, honest conversations are key to a physician/patient talk about hospice care

“The patient knows they aren’t doing well and everyone knows it might be time to talk about transitioning to another plan of care—the “hospice conversation.” But no one brings it up. It’s the elephant in the room.”

That’s how Diana P. English, MD, obstetrician/gynecologist, University of South Florida, Tampa, FL, led off her session about how to discuss hospice care as an option before it’s the only option.

Barriers to addressing that elephant are real, powerful, and often very emotional, Dr. English said. “We need to be aware of these barriers so we can have honest conversations that align patients care with what’s important to the patient and their goals.”

Barriers that block that all important hospice conversation fall into three general buckets.

  • Patient barriers often hinge on confusion and/or lack of knowledge. For example, Dr. English explained, physicians care for many very sick patients with a cancer diagnosis. “But for the patient, this is a very personal and individual journey. They may not know how to ask about their prognosis or the future.

          Another patient barrier is the old “if you don’t talk about it, it’s not real” superstition. “A lot of patients have echoed that sentiment,” Dr. English said.

          There’s also a common patient worry that the oncologist will give up if anyone even broaches treatment strategies apart from cancer directed treatments.

  • Family barriers usually trace back to a driving desire to be that solid wall of optimism. Since hospice care is sometimes confused with giving up, family members may opt to show their continued hope by taking the “hospice conversation” off the table.

        “Family members want to be strong and positive for the patient, and they sometimes see hospice as a negative—when it’s really very positive if it aligns with what’s important to the patient. In            fact, staying the course may be the more negative option,” Dr. English said. “Continuing to go through cancer treatments that are not giving the patient any quality of life improvement or                  effectively working for their disease can be one of the most hopeless situations.”

  • Physician barriers can also prevent healthy, timely conversations about hospice care. These obstacles, Dr. English said, are often about not wanting to fail their patients. “We take great pride in being able to take care of our patients, and always having another treatment option or another clinical trial to talk about,” Dr. English said. “When we’re not able to pull that out, we can sometimes feel like failures within ourselves. And this may prevent us from talking about other potentially very good options for our patients—choices that could give a patient more peace and better quality of life for whatever time they have left.”

Conversation Starters

To ignite a productive, positive, reassuring talk about hospice care, here are a few tips from Dr. English.

  • Ask patients to share their fears, worries, and goals about the future—if or when their health worsens.
  • Ask about what gives the patient joy.
  • Ask the patient how much information they actually want to discuss about their future. “You’re asking that patient for permission to share information with them, and this allows the patient to feel a sense of control.

If the patient is open to hearing information, Dr. English suggests saying something like, “I hope this next line of chemotherapy works well to shrink or at least stabilize your disease. However, I’m worried that your disease will likely continue to progress, and may cause you to get weaker and weaker. Time may be short and given that possibility, what is most important to you? What are your goals?”

Most patients, Dr. English explained, will say that spending time with friends and family at home is most important. Patients also often say that they don’t want to suffer during their final days.

“Use the patient’s own words to form you reply,” Dr. English said. For example, you might try, “I hear you saying that time at home with your friends and family is important. And you mentioned doing things you enjoy, like gardening. I think that the support of hospice, coming into your home and focusing on managing your symptoms, is the right fit for you. What do you think?”

Conversation Constants

Dr. English suggests stressing three points during all conversations with a patient about hospice care.

  • Affirm your continued commitment to the patient regardless of their decision.
  • Remind the patient that hospice benefits are covered by Medicare.
  • Emphasize that hospice is not a one way street. If, for example, the patient begins to feel stronger after aggressive symptom management, and they want to revisit traditional therapist, this is a possible discussion.

Dr. English ended her session as she began—by reiterating that the “hospice conversation” is not a one-time event. “It’s best done as a continuing process, talking to patients about where they’re at, what they’re thinking, and what might best fit their goals as they move forward.”