The bad news: Giving and receiving a terminal diagnosis

It’s the conversation no one wants to have, yet it happens in uncountable numbers of doctors’ offices every day: A physician informs a patient that their ailment has progressed to the point where the question is no longer how to treat it, but how much time the patient has left to live.

No patient wants to receive such news; no doctor wants to give it. But there are ways to deliver bad news in a way that leaves a patient feeling cared for and with a purpose to the rest of their days. A local doctor and professor, a cancer survivor and a social worker recently shared their views on what doctors and patients can do to soften the blow of a terminal diagnosis.

The doctor

Doctors are taught how to diagnose their patients’ ailments and treat them; in short, to make their patients’ lives better. But sometimes the news isn’t good — the diagnosis is the worst-case scenario; maybe the prognosis is for a drastically shortened life.

It’s still the doctor’s responsibility to provide care in these moments, even if it’s not the kind of heroic, lifesaving care one typically goes into medicine for. But thanks to Dr. Christina Puchalski, at the George Washington University Medical School, breaking bad news to a patient is part of a future doctor’s education.

Puchalski is the founder and director of the Institute for Spirituality and Health at the George Washington University Medical School and has written extensively on the importance of a spiritual aspect to medical care, particularly at the end of life. The institute began in 1992, and since 1996 its courses have been a required part of the medical school’s curriculum.

Puchalski told WTOP recently that listening is the key: “How to listen deeply to a patient — not just come in, sit down, give the diagnosis and leave.”

Medical students follow up classroom study by working with “standardized patients” — actors who enact six scenarios, from first diagnosis to recurrence and onward, until they’re enacting a visit at a hospice. “They learn through that progressive experience how to have these conversations at different stages,” Puchalski said.

Each case is different, of course: “Some people want to hear a very blunt (opinion) … other people, you have to be a little more responsive to where they are.” But students in her program learn how to “be compassionate and fully present for the patient. … You have to use intuition as well as your awareness of where the person is, to know when to just stop talking and give the person a chance to process, and just sit with that bit of news first.

“And if they start crying, to respond to that … to say ‘Tell me what’s going on right now’ … We can’t take that suffering away from them, but to listen to where they are and be present for that, and help the patient process it at their own pace.”

She worked with a playwright to put together a skit exhibiting more- and less-helpful ways to hold difficult conversations:

‘Not just sitting there waiting’

Puchalski said doctors need to strike a balance between being too blunt and sugarcoating the truth. She’s had patients who are alive and kicking 20 years after having been given six months to live. “These conversations can’t be so black and white. … But you can’t just pussyfoot around.”

She said “generally speaking” is a good phrase to use while talking about a prognosis, and keeping the emphasis on what can be done — for example, something like “The chemotherapy is no longer working, and it’s causing more side effects than benefiting you, so we can still continue to treat you (with palliative and hospice care) so that you can have a good quality of life.”

Puchalski also teaches doctors to set up what she calls “goals of care.” For example, a patient might want to see their child graduate from high school, or get them launched into adult life. “(So) what are some things you can do right now that would help launch them? Some way to find meaning in whatever time they have left, and some way to focus on what matters most.”

Spirituality might not necessarily mean religion. A patient might experience spirituality by being in nature, or with their family, or doing whatever they value most — some people, Puchalski said, want more than anything to work as long as possible.

The most important goal, she said, is to make sure “dying is not just sitting there waiting.”

This kind of training isn’t just a matter of patient care, Puchalski said; it’s critical to a doctor’s process of self-care and well-being. It goes to the core of what it means to practice medicine: “How do we help (physicians) live out that vocation to serve others?”

She called the conversation “probably one of the most difficult conversations to have … We want to have a sense that we’re making a difference in our patients’ lives. But there are many stresses in health care today that make it difficult to do that.”

A doctor could be running behind, with a tight schedule, but having to move on and “leave the patient in their misery” is not only a disservice to the patient, Puchalski said; it’s a factor that leads to burnout or worse, as depression and even suicide among doctors is on the rise.

“We can teach (clinicians) how to break bad news, but at the same time we need to teach them to look into themselves. … What is your inner life about? What is your vocation? Why did you become a doctor? And when clinicians pay attention to that part of themselves … and when they can practice what they fully believe in … both the patient and the clinicians benefit.”

Otherwise, “clinicians are going to run away from this conversation … and patients and clinicians are going to suffer.”

The patient

JoAnn Symons, a cervical cancer survivor, said that was key when she got the bad news. “After surgery, they said to me ‘Yes, you have to have chemo, but we have more effective drugs now to help you get through that.’ Because a lot of that’s just terrifying — to hear ‘cancer’ and ‘chemo’ for the first time applied to them. But there are ways to soften those blows.”

Symons is a member of Rhonda’s Club, the Ovarian and Gynecological Cancer Coalition. The club’s Survivors Teaching Students program visits 111 medical schools and 118 nursing schools, as well as nurse practitioner programs.

The visits, she said, are critical: Students “don’t read much about the patient perspective in their textbooks,” she said. “ … They’re more likely to remember it.”

Rhonda’s Club also endorses the idea of “nurse navigators”: One person who is assigned to follow the patient through their course of treatment, helping them with everything from paperwork to scheduling with specialists. “And just someone they can call to talk with at any point,” Symons said. “Because we don’t expect a surgeon to be available to talk with patients around the clock.”

Symons advised patients to bring a companion or relative into the consultation, “because it’s so technical sometimes, and they’re so overwhelmed, that it’s important to have an extra set of ears there to hear exactly what’s going on.”

She advised doctors to “Get a reading from your patient on how much they want to know.”

“Some older patients don’t want to hear all the medical details; some younger patients are a little more savvy — they’ve looked everything up on the web and they want to know exactly what’s going to happen to them.”

The social worker

Mick Neustadt, a licensed social worker at the Wendt Center for Loss and Healing, in D.C., works with patients who have received a terminal diagnosis, as well as people whose relatives have gotten one.

He said both patients and relatives can fall prey to “emotional exhaustion,” and said it’s important to recognize that emotions ranging from anger to sadness to confusion are normal. “All of those are part of the process.”

Similar to Puchalski’s advice to doctors, Neustadt’s principal advice for patients involves prioritizing. “Give yourself the time you do have to really put your energy toward what’s most important to you, in terms of being with the people who are most important to you. And also to give yourself time for reflection.”

He said that kind of reflection almost always leads to the need for forgiveness — both to ask for it and to offer it: “taking stock of life lived, and coming to a point, if you can, of softening and forgiving yourself in terms of a letting-go, and forgiving others … looking back as you are coming to the end of life, and you realize there are all these things that you held on to.”

Everyone has had many relationships and influences that steered their actions in life, he said, and it’s important to the process of forgiveness to keep that in mind. “Just (slow) down to recognize and to forgive others who may have harmed you, recognizing that they, too, were the subject of many different conditions, and they did the best that they could in the situation they were presented with.”

He added that social media can help people stay in touch, especially after they may lose the ability to leave the house.

Learning you don’t have much time left is the ultimate loss of control, Neustadt said, and prioritizing, forgiving and opening up to you feelings gives a patient the sense that “I do have some part in how I want to live for the time that I have left.”

While Neustadt acknowledges that his work “can take its toll” on him, preparing someone to let go can have its own successes — “if they were able to have time to come closer to themselves, to look inward, have some time for reflection and introspection, and they were able to soften, even just a little bit, around going into death. …

“If the person really felt acknowledged by me, and they felt listened to, I think that’s what makes it a success.”

Rick Massimo

Rick Massimo came to WTOP, and to Washington, in 2013 after having lived in Providence, R.I., since he was a child. He's the author of "A Walking Tour of the Georgetown Set" and "I Got a Song: A History of the Newport Folk Festival."

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