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Communicating with terminally ill patients: A physician’s perspective

Earlier this month we published a candid and powerful personal essay from Jessica Rice, a thirtysomething woman with terminal cancer. An emerging theme of Jessica's piece was the importance of frank conversation between physician and patient, and I was curious what a provider - someone who has difficult conversations on an almost daily basis - would think of this patient's story and perspective.

Thoracic oncologist Kavitha Jennifer Ramchandran, MD, read the piece and said she was struck by Rice's age - "it's not too far away from where I am now" - and "what seemed to be a fearlessness and wisdom beyond her years." What the piece also reminded Ramchandran of, she said, is the fact that despite the existence of many new drugs, like crizotinib, some cancers just can't be cured. "Sometimes I worry that we create false hope for something that is not achievable," she told me. The rest of our conversation is below.

Have you had a patient like Jessica before? Have you ever been made to feel uncomfortable by a patient's directness?

Yes, several. I appreciate directness. As an oncologist and a palliative medicine physician one of the things that we spend a great deal of time on is communication. The tenets of that are pretty basic - if someone wants the honest truth you provide it, but with empathy, kindness and a plan forward.

However, sometimes when patients ask a direct question, they're less sure they want a direct answer. So one of the things I try to do is make sure the patient actually wants the information he or she is asking for, and whether the timing and setting are correct. Often when probed, patients are not ready to hear difficult information, or they might need some time or a loved one present.

I imagine terminally ill and very sick patients vary greatly in how "real" they want their physicians to be - some likely want to talk about the difficult issues while others might want to stay hopeful and perhaps not talk directly about the end. As a provider, how do you navigate that?

A few strategies.

  1. Ask permission. Patients can tell me whether they're ready to receive certain information.
  2. Establish a comfortable setting. No one can talk when they are in pain or uncomfortable.
  3. Make sure the right players are in the room. Some patients can't make a decision without their partner, a parent, or a child present.
  4. If patients don't want information, find out who they want us to communicate with. Establish a surrogate decision-maker.

By following a few simple rules, we can avoid giving people more information than they want or are ready for. A patient may say to me, "Give it to me doc, I'm ready to hear it." But even in those situations, I make sure I have back-up in place, such as a social worker or a nurse who can help the patient digest all of the information he or she is provided.

How do you determine when to broach the subject of end of life? And does talking about death change the patient/doctor interaction in any way?

Patients are thinking about their own mortality the moment they're given a life-threatening diagnosis. Often the doctor is trying to protect the patient, and ironically the patient is trying to protect the doctor. Usually both parties know that the disease is serious.

I usually provide a care map or plan with clear lefts and rights. I let people know that I have a certain number of tools in my toolbox but at some point those tools will no longer be effective and the disease will become more difficult to control. I try to focus on the "disease" rather than the "fight" because basically even with all of our best efforts, some of these diseases are not curable. This isn't the fault of the patient or the physician.

I think many patients are actually glad when physicians broach the topic of end of life. It removes some of the anxiety and creates a partnership where the patients knows they have a physician who will take care of them both in good times and hard times. It also opens up the ability for both parties to talk about hard topics, rather than avoid them.

Do you find that the families of terminally ill patients need to talk about death as much as the patients do?

Absolutely. Their journey is just beginning, while their loved ones' journey is ending. It's a different path and struggle. The same questions and rules apply around information giving, kindness, and making a plan.

Breaking bad news, or talking about issues related to end of treatment and death, can't be easy for doctors. What kind of training do physicians typically receive? Or is it something most learn on the job?

Most physicians don't get formal training except in small bits and pieces during medical school or residency. Unfortunately we all pick up habits during our practice over time, and we don't get regular feedback on our communication from our colleagues or our trainees.

Several studies have shown that oncologists feel more comfortable and well-trained doing a procedure like a bone marrow biopsy versus breaking bad news. The irony here is that most oncologists in practice often stop doing certain procedures, but almost all continue to deliver difficult news on a daily basis.

What do you think are the most important things for doctors to keep in mind or do when it comes to communicating with patients with serious or terminal cancers?

Be humble. We're not in their shoes. Be kind. Do unto others as you would want done to you. Listen carefully. A hug is okay in the right setting. It's okay to cry at times... Cancer sucks.

At the end of the day, find the things that keep you whole and happy... It will let you do all the right things again the next day.

Previously: Asking the hardest questions: Talking with doctors while terminally ill, On a mission to transform end-of-life care,  The importance of patient/doctor end-of-life discussions and A Stanford nurse shares her experience in talking to her aging mother about end-of-life decisions
Hat tip to John Novack, Inspire

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