This piece is part of a series focused on the toughest patient conversations. The patient's name has been changed for privacy.
When I met Sally Ann for the first time I was following up on behalf of another palliative care provider. Her sign out indicated that our service was primarily consulted for assistance with symptom management, but that we would need to address the goals of care, given her poor prognosis. Sally Ann had metastatic cancer with progression of disease through multiple lines of treatment and had not eaten for weeks due to metastases throughout her gastrointestinal tract. I decided I would start the conversation about her goals of care that day, and figured she must have some idea this was coming.
"Do you all have Sally Ann in room 15?" I asked the group of residents sitting outside the room.
"Yes, we do. Does she know she is dying? She appears to think she is going to get stronger and get more chemo, but she can't even keep food down," one of the residents said, as if the patient should see it that clearly.
"I'm just meeting her for the first time today," I said, "I am going to try to get a sense of where she is at."
"Thank you," they said, in a relieved tone. They seemed to be operating under the assumption I was going to go into the room, tell the patient she was dying, and that hospice was the best option for her. They also appeared to believe she would agree to this, seeing that it was the only scientifically rational approach, and that they could begin their safe discharge plan.
I walked into her room and introduced myself as one of the palliative care nurse practitioners. She was in her 70s but looked closer to 50.
"I'm miserable," she said, "I haven't been able to eat in weeks. I'm pissed. I'm stuck in bed attached to all of these IVs, I'm too weak to get up on my own. Before I got this diagnosis, I was the healthiest person you could meet -- my friends would look to me for advice. I was active and strong," she said. And I believed it looking at her. She continued, "I want to eat again, and I think if we can get rid of the cancer in my stomach, I can do that."
This woman was determined, and I quickly realized that I was not the right person to tell her that further treatment was unlikely. I knew what I had to do. I reached out to the person who had known this patient from day one and who she probably trusted the most: her oncologist.
"Yes, I think hospice is certainly appropriate for her. Her cancer is exploding and there is no way she is well enough to get treatment right now given her deconditioning," her oncologist said to me over the phone. "Look, I have a patient coming in, but you certainly have my support in discussing hospice with her," he said as he rushed off the phone.
Passing on this information secondhand wasn't going to satisfy Sally Ann. But her oncologist probably had a packed schedule of patients, and he likely would not be available to have a meeting with the patient the next day. I was now faced with a situation I have encountered too many times: telling this patient I barely knew about her grim prognosis and the very few options available to her.
In my experience, palliative care providers are often perceived as being particularly skilled at having these conversations with anyone, at any time, even if it's a stranger. However, palliative care is much more of a process. It's about meeting the patient where they are in their journey. We learn what drives them, their fears, and what they consider quality of life. Only then can we coordinate their care in a way that matches their goals with the reality of their situation. This can't happen in one visit. It requires trust.
In the case of Sally Ann, I knew right away that she was not going to change direction without being confident that she had exhausted all of her options. When it was time to stop treatment, she needed to hear it from her doctor, not me.
Later that afternoon as I was thinking about this, I received a text from the covering oncologist, asking me to come up to Sally Ann's room. When I arrived, it was clear the oncologist had told Sally Ann that she was dying and recommended hospice. Sally Ann was predictably hysterical. These conversations are always difficult, but even more so with a stranger.
"This is Caroline, she is part of our palliative care team of experts who can assist with these conversations and make sure you have the right medication to make you comfortable," he said, simply. But it wasn't that simple for Sally Ann. "You are in good hands," he said as he inched toward the door.
Sally Ann would hear from her primary oncologist the next day, affirming what she had been told. Once she came to terms with her prognosis, and only then, was it time for me to put my expertise to use and focus on her goals of care. But perhaps we should take a step back and consider, is this chain of events the best way to deliver tough news to our patients?
is a practicing palliative care in the Nuvance Health system at both Norwalk Hospital and Danbury Hospital in Connecticut, and an advisory board member of 鶹ý's "The Lab."